The Recipe Resource

Savoury Muffins (DF, WF, GF, EF, SF, NF)

noreply@blogger.com (Twinsplustwo) — Wed, 07 May 2025 15:58:00 +0000

Really delicious and super healthy! We like the chickpea (gram) flour option. Eat fresh, or freeze to defrost and eat later. Sadly egg free baked goods do not keep and go stale very quickly out of the freezer.

Ingredients - makes 14

3 cups GF flour (I recommend Dove's Farm self-raising, but the muffins in the picture have gram flour instead for additional nutritional benefit)
1/4 cup nutritional yeast
1tsp baking powder (if plain flour used)
1tsp onion granules
1tsp garlic granules (optional, we leave out due to allergy)
1 1/4 cup oat milk
1/2 cup olive oil
1 tbs cider vinegar
1 cup grated courgette
1 cup grated carrot
1/2 cup red pepper diced
1/2 cup spinach sliced
1/2 cup vegan cheese + extra for topping (I recommend Cathedral City plant cheese)
3 tbs pumpkin seeds
one flax egg (see here https://thereciperesource.blogspot.com/p/basic-substitutions.html )

Method

Preheat the oven to 180C (170C Fan) and fill a muffin tin with paper cases
Mix the flax egg and chill
Add all dry ingredients to one bowl
Add all wet ingredients to a second bowl.
Make a well in the centre of the dry bowl, add the wet ingredients and combine
Add the flax 'egg' and mix well
Spoon into muffin cases
Bake for 20-25 mins until golden on top.
Leave to cool for ten minutes before transferring to a wire rack.

Updates!

noreply@blogger.com (Twinsplustwo) — Thu, 22 Sep 2022 17:40:00 +0000

I know it's been a while... In fact I nearly deleted the blog entirely as I was unhappy with the out of date sections. However I've decided to update it and so far I've updated most of the pages at the top. So keep checking in!

Unfortunately for such a long-standing blog which has survived multiple Blogger interface updates it is now incredibly difficult to change the appearance without starting from scratch, and life prevents that currently. However, the content is being dragged kicking and screaming into the present!

Lunch pots

noreply@blogger.com (Twinsplustwo) — Mon, 24 May 2021 17:18:00 +0000

Whilst in hospital in March, my daughter was keen to try some of the rather delicious Bol lunch pots / salad jars available in the newsagents on site. Problem is, with her collection of food reactions this was unlikely to be possible. We did however discover that one was safe, as long as we discarded the sealed dressing inside. *

It was OK, but nothing special and to be honest, not as filling as it could be. But it got me thinking! So I bought another, saved the pots and created a couple of my own!

The idea is really simple. First you add a grain/carbohydrate layer. We've used different kinds of rice (long grain works very well, as does wild rice) and free from couscous. The current favourite is quinoa, you could use pasta too if you didn't mind breaking it up a little at lunchtime.

I then add roasted vegetables. I use Marks and Spencer's frozen chargrilled veg, as they have nothing else added - no wheat, no garlic. I pan fry some with olive oil and mixed herbs, layer them on top and leave the contents to cool.

Next you choose your protein layer. This can be tofu - plain or marinated, tempeh, cubes of "cheese" such as coconut based "feta"cheese. You can use chicken and we've also used tuna or beans. Whatever takes your fancy really! If I'm using tofu or tempeh, I always use the same pan I cooked the veg in, it helps give it flavour. I often add gluten free soy sauce, or other flavours.

Lastly, once it's all cool (be patient here, otherwise your leaves will wilt and you will have condensation inside the pot...) add spinach leaves, salad leaves and sprinkle with seeds of your choice, we use sunflower and pumpkin seeds. I also have a few tiny dressing bottles from the Sistema range, perfect for popping in the top filled with your safe dressing!

Lastly, don't be fooled. These are really very filling, if tipped out into a bowl or onto a plate you will see there is a significant meal here. It's perfect for packed lunches, for adults and teens, and means they are getting a balanced and nutritious meal. I make them up twice a week, two days at a time. Then for Day 5 we do something different. Enjoy!

*NB We have NOT been advised to avoid items labelled "may contain", neither does my daughter suffer from IgE allergies nor carry an Epipen. This was a personal choice, which I would NOT advise others to make without first checking with their health professional.

Meal in a bottle - some wonderful new options!

noreply@blogger.com (Twinsplustwo) — Fri, 05 Mar 2021 15:02:00 +0000

Some really useful finds this week! Our daughter is still on a really restricted diet and I've been on the look out for complete meals for ages, for those times when you end up in hospital and they can only feed your child cold chips, (which is all they ever seem to be able to offer a child on a medical exclusion diet... goodness knows how they think parents manage!) or a school/choir overnight trip where you need a nutritional back up for the inevitable times the caterers get it wrong.... and now I have some!

HUEL shakes and bars. I've known about HUEL complete meal supplement powder for a while. You can live on it, it's complete... but it was still a little too "medical"and lacking in convenience. The shakes are A delicious, complete, and affordable meal in a handy bottle, containing all 26 essential vitamins and minerals, carbohydrates, protein, fat, fibre and phytonutrients. They are quite thick, like custard and in fact we now use the vanilla one instead of custard, and they are very palatable, not sickly sweet. (A rare thing in free from food world!)

Flavours are Chocolate, Vanilla, Berry and now creamy Banana. I'll be honest, if your child has become used to the over-sweet free from treats from the supermarket food aisle, then you are going to have a tough time convincing them that these are acceptable. The chocolate one for example tastes like chocolate milk - the dairy sugar sweetened type, not the fake artificially over-sweetened hot chocolate taste of a Starbucks hot chocolate. You can taste the cocoa, not the sugar as the primary taste. (I think it's perfect, I've struggled for over a decade to find sensible free from alternatives which don't sacrifice flavour for artificial sweetener!)

Interestingly, my youngest son (who is now on a full diet) has asked if he can have a bottle of Huel instead of sandwiches (which he hates) for lunch on the odd day for school. He is 15, so it must be socially acceptable..... and he *does* have a sweet tooth, so it can't be that bad!

BOL Brekkie power shakes. We can't use any other BOL products, they have tomato and or garlic in, or wheat or one of the many other things K has to avoid, but these are FAB and very high in protein.

They come in six flavours, and are really high in protein and contain a full spectrum of essential vitamins and minerals. The Columbian Coffee one might not suit young children but it's 15g protein is pretty impressive, and Bol offer a "Build a Box" option, with free delivery for 12+ shakes. Given the weight of these that's also pretty impressive. The glass bottles are of course recyclable, but make rather smart smoothie bottles to use again.....

NOT a lifestyle Choice - why the Free From Food industry needs to reconnect with it's primary consumers

noreply@blogger.com (Twinsplustwo) — Fri, 08 Mar 2019 13:34:00 +0000

I published this in 2014 but it's oh-so-pertinent again. Marks and Spencer recently introduced their "Plant Kitchen" range in response to the new Vegan trend (nothing wrong with that) but forgot those of us NOT dealing with choice and included wheat and dairy in meals/foods previously free of these allergens. Sainsbury's started slapping "may contain ... all of the top 14 allergens" on their fresh meat and now the media are flagging up the "chemicals" in gluten free foods. It's time we remembered why the such foods exist, and what their primary market is.

In my inbox this morning was a request to complete a short and sweet questionnaire about "Free From" foods. Right I thought, I'm a bit of an expert on that one... should only take me a minute! So I duly clicked on the link... how long could it take?!

Well that depends on whether you find the questionnaire possible to complete in the first place, and whether it triggers a response like this or not :-

So why I am getting so hot under the collar about an innocuous set of questions? Well here they are:-

I'll tell you what my "attitude" towards them is; that they are an essential, vital form of sustenance for my children who would otherwise become very ill. Foods which are sold as if I should be grateful, which are often poor in nutritional content and high in price, which we cannot do without.

It wouldn't be so bad if the first option in question 2 was "Medical Necessity" - because after all, that is the main reason the "Free From" food industry exists, even if it has become something of a fad amongst many, and this growth in consumption of "dietary" foods has undoubtedly increased production, which benefits us all. However, if the main focus for it's existence is forgotten, short cuts will be taken and those with medical needs will be the first to miss out precisely because - and hear we come to the crux of the argument - for us it's NOT a CHOICE!

Eating "freefrom" food is not a lifestyle choice for the vast majority, it's a no-alternative, medically imposed way of life and to suggest otherwise is both ignorant and offensive.

So when faced with a questionnaire asking me to rate answers as to why I choose "free from" food in order of importance, seeing options such as "helps weight loss" and "they are lower calorie" makes me not a little cross!

The Recipe Resource caters for children on exclusion diets. I started the Recipe Resource because having struggled for years feeding my own children with complex allergies I felt I would like to do something positive, and help others maybe avoid some of the pitfalls I had fallen prey to and impart some knowledge learned along the way.

That's the short version. If you want the long version, it's here.

My kids have EGID - Eosinophilic Disease. If they eat food their body has a local reaction to then inflammation occurs in the gut, compounded by slow motility thanks to the EDS. Basic bodily functions such as digestion, absorption and defecation don't happen as nature intended. And that's the VERY short version. EGID is a very unpleasant, poorly understood, emergent disease, with other unpleasant symptoms beyond the gut. It often goes with other disorders too, Hypermobility Syndrome, EDS and (as is increasingly noted) Autism. We have the full house here. For the EGID side of things we are dairy, soya, wheat, gluten, egg, tomato and garlic free and on minimal beef and other foods. One of my kids used to be tube fed. And we are the lucky ones - I know far too many children who cannot eat at all - some whom the media, in particular the Daily Mail - seek to advertise as rare and bizarre anomalies. Sadly their numbers are dramatically increasing.

We don't CHOOSE free from foods. It's a life or get extremely ill choice. And as for calories and weight loss - that's a pretty sick joke when many of us are desperately trying to INCREASE the calories our children take in.

The Free From food industry is as guilty as the media for jumping on any marketing bandwagon they can sniff out - with the exception of a few notable and applaudable exclusions. Many now falsely believe "Free From" food is automatically healthier! Whilst this is of course true in some respects, if you have Coeliac Disease then yes, a gluten free loaf (a third the size of a regular one costing £2.99) IS the healthier option) but I do hate the trend for "free from" exclusion diets amongst some celebrities who have little or no idea of the impact publicising false health "benefits" can have. But what is particularly depressing is that my children, like so many other children and adults are dependent on the "allergy" food industry to meet their nutritional needs - whether partially or fully. We have no choice. Without a strict exclusion diet my son was heading towards bowel surgery due to chronic inflammation and resultant nerve damage.

Click to view the FreeFrom Food Awards 2014

So whilst celebrities such as Gwyneth claim to "choose" free from food for their kids, mine (and plenty of others I know) would give their right arm to eat what the majority can enjoy. And this particularly poignant at Easter time when (as with other family festivals) there is food everywhere.

As a society we've moved on in many respects to understanding difficulties and disabilities, isn't it about time we applied a little of that awareness and understanding to those with hidden illnesses? This is currently especially true of those with non IgE allergies. And no, I DON'T mean intolerances, if you still think there is only one type of allergy, and wish to learn more about non systemic allergy read here. You've probably heard of Coeliac Disease? Well that's a local allergy - or a type IV hypersensitivity too.

Food is such a central part of Western society it is far more than just fuel. Rightly or wrongly we celebrate with, and by creating delicious treats to enjoy and share. There is little more marginalising, more excluding than a traditional Christmas or Easter when you have complex food allergies- or if you cannot eat at all. Manufacturing"Free From" food is a massive money spinner and people who need safe foods for health reasons are being taken advantage of whilst the media persists in promoting free from as a choice.

I deleted the questionnaire, I'm submitting this instead.

Traybake Cake - GF, WF, EF, DF, SF, NF

noreply@blogger.com (Twinsplustwo) — Sun, 20 Jan 2019 20:25:00 +0000

This is a new favourite here! It's basically a simple sponge cake mixture with everything substituted as necessary. It can be a cup cake, single cake or traybake cake, whatever takes your fancy, the basic ratio is 4:4:4:2 or 6:6:6:3 for sugar:margarine:flour:eggs and you can scale it up to suit. So 6oz sugar, 6oz margarine, 6oz self raising flour and three eggs. the numbers don't sound quite so neat with grams, but it's the same ratio! I decorated with Betty Crocker frosting and safe marshmallows and sprinkles.

My youngest son pronounced it delicious - then post on Instagram as "Archie Berry" that it was "very tasty, very soft on the inside, crisp on the outside with a beautiful blend of flavour."!! Praise indeed! It didn't last long... but definitely kept well overnight.

#traybake #cake #glutenfree #eggfree #dairyfree #soyafree #nutfree

Ingredients

170g (6oz margarine
170g (6oz) caster sugar
1 tsp vanilla essence
170g (6oz) self-raising flour (I use Doves Farm)
tsp additional gluten-free baking powder
3 eggs or egg replacer for 3 eggs
your choice of icing/decoration

Method

Preheat the oven to 180C (170C Fan) then lightly grease an 8" square tin, or similar capacity tin
Beat together caster sugar and margarine until light and creamy.
Mix up egg replacer for 3 eggs or break 3 eggs and whisk.
Sift flour, baking powder and mixed spice into a large mixing bowl.
Gradually add the eggs/egg replacer to the sugar/margarine mixture.
Add the vanilla essence
Sift flour and baking powder into a large mixing bowl.
Now combine first the eggs slowly if beating by hand, then gradually add the flour and additional baking powder.
TIP : if the mixture curdles add some flour!
If you are using a mixer, you can safely add eggs and flour all together, then combine.
Tip the mixture into the prepared tin, levelling the top with the back of a spoon.
Bake for 20-25 mins until golden on top.
Leave to cool for ten minutes before transferring to a wire rack. DO NOT CUT until fully cool.
Decorate as you please!

Lemon Loaf Cake DF EF GF WF SF NF

noreply@blogger.com (Twinsplustwo) — Thu, 27 Sep 2018 12:57:00 +0000

This is my variation on a gingerbread loaf recipe in Pippa Kendrick's "Free From Food for Family and Friends". It's a fabulous recipe, rises well and is so simple and quick to make.

Ingredients

275g Gluten-free self-raising flour (I use Doves Farm)
1tbsp Mixed Spice
1tsp additional gluten-free baking powder
200g soft light brown sugar
100ml sunflower oil
2 tbsp lemon juice
1tsp lemon flavouring
170ml water

Method

Preheat the oven to 200C (400F) then lightly grease a large loaf tin and line with baking parchment.(Tip, I buy the ready formed loaf tin liners from Lakeland!)
Sift flour, baking powder and mixed spice into a large mixing bowl.
Pour over the lemon juice, sunflower oil and lemon flavouring plus 170ml water and mix until you have a smooth batter.
Tip the mixture into the prepared loaf tin, levelling the top with the back of a spoon.
Bake for 30-35 mins or until a skewer inserted into the middle comes out clean.
Leave to cool for ten minutes before transferring to a wire rack. DO NOT CUT until full cool.

Freezes really well in slices ready for last minute treats, packed lunches and days out!

The Child First and Always?

noreply@blogger.com (Twinsplustwo) — Thu, 19 Apr 2018 08:38:00 +0000

Last night we waited for the ITV programme on Great Ormond Street with trepidation. So many families I know feel violated all over again by the articles over on The Bureau of Investigative Journalism which although ground breaking in many respects fall short of holding the Gastro department at GOSH to account. They - and we - have had to endure years of poor care/no care/false accusations whilst being kept in the dark about what was really happening at the hospital. For some it's cathartic that some of the truth is coming out at last, but for many it's opening old wounds.

Our thoughts?
It was a good start. We thought the documentary was quite clear the disease exists, but is rare. It covered the accusations of over diagnosis and over treatment simplistically but fell short of making it clear how desperate many families are for help by the time they get to GOSH. More concerning was that it also came across on the programme that it was clear cut this had occurred and that this was founded on an agreed definition of Eosinophilic Gastrointestinal Disease - EGID.

Anyone who has any experience of EGID will tell you there is no such thing.

There is no agreed diagnostic criteria for EGID beyond EoE (Eosinophilic Oesophagitis but the acronym uses the American spelling of Esophagitis) which has been recognised for years. EoE is far simpler to diagnose therefore, and there is a broadly agreed consensus on diagnosis and treatment. There should not be any eosinophils in the oesophagus - which makes it fairly straitforward to diagnose EoE if you find some!

Indeed, as I understand it Addenbrookes Consultant Dr Rob Heuschkel has in fact had patients he himself has diagnosed with EGID and treated similarly to GOSH. I've heard some families who have then been seen at the Royal London Hospital who took away medications and feeding tubes. I've also heard the reverse - The Royal London's treatment plans removed by Addenbrookes. This was not mentioned, the documentary should have made it much clearer that it’s controversial area of medicine.

EGID is an "emergent disease". Poorly defined, inadequately understood with senior consultants seeking to make a name for themselves rectifying this. The gastrointestinal departments at the three hospitals mentioned - particularly Addenbrookes and GOSH, are not known for collaborating or even getting along. It's a dog-eat-dog world out there when less than 1% medical research funding goes on gastrointestinal research - and none on paediatric gastro research. Private funding and international collaboration is often the only way to further research programmes into diseases like EGID. This is where research conflicts with patient interest. Families are too often caught in the middle when consultants seek to further their research - and careers - by pursuing ground breaking treatment programmes.

Nothing I've seen or read this week has made clear the referral process to GOSH.
Your child doesn't get referred to GOSH unless other avenues locally have been fully explored. It's not a natural process as implied by the documentary. You don't attend a few local appointments then get a quick referral. Your child will have waited weeks or months for a local appointment. Then you are seen for months or years locally (unless particularly acute but this is less common in Gastroenterology) before anyone discusses a tertiary referral. Indeed many hospitals dislike referring to GOSH who are known locally as "God's Own Service" because once there, local hospitals lose control over patients they are expected to care for locally. So by the time your child reaches GOSH, you've been through the mill a bit, your child will have had symptoms for months if not years and you are likely to be feeling pretty desperate. It's a place of last resort! The system is further complicated by NHS rules which mean smaller local hospitals, like District Generals, cannot perform surgeries or interventions on any child under 2, and many children under 12. This then means tertiary hospitals like GOSH sometimes see patients earlier than they might normally but it works well in other specialities and children visit GOSH for procedures but then return home.

I've also read little about the genuine good intentions of the consultants at GOSH.
Hand on heart I know our consultant wanted to help our children. That may have got in the way of best practice, but he absolutely cared. But in a department where there were several consultants treating the same symptoms in completely different ways with no working together, no overlap, absolutely no consensus this wasn't enough. Administration was a nightmare and there was zero communication with local teams. It was a recipe for disaster.

For us, the biggest "gap" in the story being told this week is how the hospital sought to scapegoat parents to avoid culpability for the criticism and errors being levelled at them. As Amazing Productions pointed out in last night's documentary GOSH are still hiding information. There HAS been lasting harm to many families from this whole saga. There has NOT been a full and candid apology from the Trust. Families have NOT been kept informed about care for their children and many were not even officially diagnosed, just dropped!

The right to obtain information
We’ve had an open Statutory Access Request for Information (SAR) for a year and and a half now. Parents have a right to see medical notes and emails between professionals, MDT minutes etc. but these are being withheld. We actually learned that until December 2017 there was not even a procedure for answering these requests and the hospital had just sat on them since the impact of the 2015 RCPCH Review started to be felt! They have now appointed someone to deal with all SARs but it will take months - if not years. This is simply not good enough if you have been falsely accused of FII, or your child has no care.

Ironically, the reason given for not supplying information is that it "might cause harm" - which given the scope of this week's exposé on the hospital is quite staggering. Apparently it’s ok to supply drugs that might cause harm, but data you are legally entitled to is withheld for that reason!

I would encourage parents similarly unable to obtain more than a few photocopies of medical records to report Great Ormond Street to the Information Commissioner for breach of the Data Protection Act. Their website is here.

I set up The Recipe Resource after years of struggling with debilitating gastrointestinal symptoms. Our story is here. But there are still many families still dealing with similar issues, whatever their diagnosis, and the last thing they need is a backlash which removes all understanding and support. That would be as bad as blaming parents for requesting interventions, and as damaging for the children who are supposed to be the focus for care. Gut food reactions need MORE awareness and MORE understanding. Otherwise there is no hope of a consistent, helpful approach for parents living the nightmare that is feeding and caring for a child whose gut cannot perform the basic functions it was intended to AS it was intended to. My children and all the other children I know suffering with gut allergies and related diseases deserve better. FAR better.

The Child First and Always.

A Post Fact Era

noreply@blogger.com (Twinsplustwo) — Sun, 15 Apr 2018 11:28:00 +0000

- or how Great Ormond Street Hospital for Children managed to avoid the factual information of their damning Investigative Review in 2015 from going public whilst parents took the blame.

So today, you have probably read The Guardian article on over diagnosis and over treatment of EGID at Great Ormond Street Hospital over the past seven years. Having been in the middle of this for all of those seven years, I can assure you there is MUCH more to the story. There is more info here, sadly the Syrian situation meant the Guardian article was cut down. It's STILL not the whole story though.

Warning: This is super long. The events at Great Ormond Street over the past few years have left many of my friends and I reeling, collateral damage as the Gastro department attempted to extricate themselves from a hugely damning - and damaging, had it been made public - investigation by the Royal College of Paediatrics and Child Health. What followed their investigation in 2015 should make you angry. Very angry. This hospital persistently campaigns for charitable funding over and above any other hospital in the UK. Many departments are centres of excellence, but not Gastro. The RCPCH identified considerable failings, but in an attempt to restore order the proverbial baby went out with the bath water. Good doctors were scapegoated along with parents and the biggest losers of all were the patients.

Children.

Our Story

We first went to GOSH at the end of July 2010. With a very strong family history of reflux and associated gastro issues, also seemingly non-associated non-gastro issues, we were desperate for answers. As per our story here http://thereciperesource.blogspot.co.uk/2014/02/why-i-set-up-recipe-resource-long.html we were making progress on the reflux but struggling with motility issues, distension and a host of other issues.

We initially saw our new consultant privately, following an NHS referral from our local hospital being moved to another Consultant. (Our local paediatrician was keen for us to see this particular doctor because she had several patients under him and felt he was most expert on allergic gut conditions and would aim for the most normal approach possible, unlike some consultants at GOSH who were renown for pulling all food and imposing formula only diets when EGID or similar was suspected.)

Our consultant was quite thorough but very quickly fitted both twins into the allergic gut camp during our discussion.

The photo below of our son’s hugely distended abdomen concerned him considerably. He later said he was concerned this was symptomatic of Pseudo Obstruction but in actual fact it was more connected with the 12 sachets a day of Movicol he had been prescribed locally for some time - something I had been concerned about. Movicol is the same plastic that is in disposable nappies. All parents have no doubt seen what happens when a toddler in a nappy sits in water.... it's a great drug for those with hard stool, but if your gut can't move loose stool, it certainly isn't going to do a great job of moving large volumes of loose stool...

We were prescribed medication - cetirizine daily, sodium chromoglycate and maintained our high dose of PPI medication (acid production suppressant) and were booked for review. Unfortunately our son’s motility issues were no better so he was booked for a gastroscopy and colonoscopy. This was no knee jerk reaction. Our son was going 2-3 weeks without passing stool then blocking the toilet, and was in huge discomfort. We were told that significant eosinophils per hpf were found throughout his bowel, in addition to lymphoid hyperplasia and he was diagnosed with Eosinophilic Enterocolitis.

There was discussion as to whether Lymphoid Hyperplasia is EGID “waxing” or “waning”, and I actually asked how he knew eosinophils were intrinsically bad - or whether they in fact be part of the repair process? I know of many families for whom LH became the sole reason for diagnosis, and later many more who were diagnosed on symptoms alone. I suspect the desire to reduce invasive testing was the paramount concern for our consultant, but however well intentioned this meant some were perhaps labelled without supporting evidence. This should however be weighed against the merits of trialling treatments to produce resolution as quickly and easily as possible though with minimal discomfort and maximum gain for the patient. For this reason we never queried his assertion that our daughter was also an EGID patient.

Over the next few years our children never really became symptom free, although treatment DID mean they were better managed, growing properly and thriving.

This should not be understated. Gt Ormond Street is not a local hospital. It's usually a place of last resort, where children with chronic or seriously acute problems go when no one else can help. Families are often desperate - like us - and grateful for help. It's also a place of novel and slightly unusual treatments, doctors are at the cutting edge of paediatric medicine and are always trying to push boundaries to help children. We embraced the plan - and the early results it brought.

We were also told their hypermobility issues often went hand in hand with EGID, and certainly as a family we fitted the picture he was describing. (Indeed, my father, who has suffered severe reflux all his life and almost died of aspiration pneumania when younger had an endoscopy locally a few years back. He too was over threshold for an EoE diagnosis. )

Appalling Errors from GOSH

We did have concerns about the slapdash way GOSH in general dealt with clinic letters, appointments, records and medication. Their inability to liaise with local teams was shocking. Over time we have had to deal with the following errors:-

Our consultant himself suggested Jej (small bowel) feeds for our son after yet another poor set of impedance study results, forgetting he ate (ie used his stomach).
Our son was overprescribed Gabapentin by a factor of 5 which I picked up, after collecting £1000 worth of the drug from the pharmacy…
Our son was also overprescribed steroids by a factor of 10 (this one the pharmacy picked up)
Secretaries repeatedly wrote “Azathioprine” (cancer drug) instead of “Azithromycin” on the twins’ clinic letters
All GOSH letters were typed in India during this time and incredibly, a year’s worth of Rheumatology letters went to Ipswich Hospital, Australia
The secretary sent me results and admission plans plus sensitive data by email for another child, when I pointed this out she replied by email “HELL! Sorry!” .
Someone merged our older son’s record with another boy of the same name born a day later, apparently also in in our town, we had admission letters for urology, neurology etc
Admin did not transfer all private notes to the NHS file leaving gaps, especially in our daughter’s notes.
Our consultant “diagnosed” our daughter with eosinophilic disease despite never having cytological evidence. He also had the twins’ older brother on a similar regime despite 2 out of 3 kids not having evidence for diagnosis of EGID. She was prescribed swallowed steroids (Flixotide swallowed not inhaled) for EoE that she didn’t have according to gastroscopy results, because he thought it was worth a try. (Perhaps it was?)
At least twice I had to call our consultant from the ward of our local hospital when our children were admitted locally, because there was no treatment plan shared from GOSH. I was expected to be the "go between" and pass on messages.
Similarly clinic letters never arrived at local clinics before our next appointment - so I had to verbally relay plans from our GOSH consultant. All highly inappropriate.
Our consultant enrolled the twins on the Cincinnati “Twins EoE Research Project” despite neither having EoE and only one having a clear EGID diagnosis.

Eventually you just “expect” errors, you expect clinic letters to take months on end to arrive, to have to explain appointments to local teams because there is never any communication or feedback - but it never, ever felt right. Someone else pointed out our consultant “never looked back” to check anything. What he didn’t remember, he assumed, and if you were not on the ball you wouldn’t pick it up.

In fact I and others were invited to be part of a Gastro Parent Network to improve relations between patients and clinicians, in an attempt to manage some of these appalling errors. It was also a requirement of a massive private donation which founded the APG - Academy of Paediatric Gastroenterology. This Network wasn't popular though, and was quickly shut down.

Many times I’ve wondered what would have happened if I had not picked up the above errors - or didn’t understand things better. Would I now have a child with a stoma, unable to poo out of his bottom and dependent on a bag? Unable to eat? It’s enough we have mega rectum, mega colon and a colon 30cm longer than it should be due to years of over prescription of Movicol. We escaped far worse.

Our second son was referred there for testing after years of serious impaction. Once puberty hit his previously mild constipation became uncontrollable and he was referred to GOSH. Immediately after scoping him our consultant gave me photos and said he was “more of the same” ie like our other children. He prescribed the same medication regime, but oddly this did not change after our son’s histology reports came back. Previously unmedicated and on an unrestricted diet his results were as near as your can get to an objective scope. However his eos levels were “unusually low”. Yet still he remained on the same medication regime for EGID. The gluten free diet DID however make a massive difference, and we reduced his laxative intake successfully.

Many times we were redirected to private care to get quicker results, or access testing unavailable on the NHS. This would be all very well and good - but there never seemed to be an informed change in care following such tests, which later made us decline. Once we were even invited - encouraged even - to travel to Belgium for oesophageal manometry for our daughter, because it was “so easy”. Using private healthcare is all very well but the notes were rarely copied across to the NHS. Having successfully become NHS patients we felt strongly we were DONE with the miscommunication and haphazard treatment and wanted to stay that way if possible. Obviously this should not be the case, administration should be able to cope with a mesh of private and state healthcare, it reduces waiting lists for others and speeds up results for many. But sadly GOSH admin couldn’t even cope with straightforward NHS communication.

Our consultant explained there was a strong link between EGID and EDS3, now called hEDS, which we hadn’t really heard of. Our older son was also under GOSH Rheumatology though and they suspected similar, and our eldest - and myself - later received an EDS diagnosis independently from local adult services so this did not seem surprising in retrospect. What WAS perhaps odd was that our consultant wrote it as a diagnosis on the twin’s clinic letters and when we participated in his research projects. We pointed out they did not have a formal diagnosis but this remained. This caused huge problems locally. GOSH Gastro tend to “own” their patients, unlike other tertiary hospitals/departments. Communication with local hospitals is at best poor, at worst dangerously absent. (Doesn’t help if your clinic letters are in Australia either…)

So although not ideal, our children remained patients at GOSH Gastro because they were the only ones willing and able to help them.

We escaped many of the unpleasant side effects of treatment others I know endured because we were very wary of additional treatments if they caused unnecessary side effects. Steroids made reflux a million times worse, never mind the behaviour issues, so the blood sugar regulation issues many experienced we only had mildly. (Steroids kill ALL eosinophils, which are “exquisitely sensitive” to them according to our consultant. But they are also involved in the insulin recognition pathway.) Likewise tube feeding impacts on insulin production because continual or more constant feeding is not normal for the body and it adapts. If that is withdrawn then blood sugar dips. How many children do I know who cannot now stop tube feeds for this reason? If I had not picked up on the Gabapentin overdose, which our pharmacy did not spot either, my youngest son could have been left with permanent kidney damage. I knew I needed to be vigilant.

2015 GOSH Gastro Review 1

In 2015, unbeknown to us a comprehensive review of the Gastro department at GOSH - and specifically those handling EGID patients - was undertaken.

Separately, the Royal College reviewers wrote an urgent, confidential letter to GOSH’s medical director warning that the service “may be causing avoidable harm to children” - a claim which GOSH has subsequently denied. The College had been told that the gastroenterology team was diagnosing some conditions, including the rare allergic disease EGID, “excessively, without…consistent criteria or thresholds”, the letter added.

Initially a study of 40 complex cases was requested but the Royal College. They didn’t get past 10 - so concerned were they that a full investigation was launched. They found over-prescription, over intervention, poor substantiation of treatment plans, over diagnosis on little or no evidence and poor outcomes for children.

NONE OF THIS HAS BEEN OFFICIALLY SHARED WITH FAMILIES.

The head of Department, who also was responsible for the EGID cohort left GOSH and went to Dubai, perhaps to avoid further scrutiny or to avoid the fallout that ensued. This left our consultant in charge - and also carrying the can for the investigation’s findings. This has seemed to many families to be rather harsh. His patients had collectively had the most “normal” of lives under treatment, avoided harsh interventions and done best. This has been forgotten in the ongoing investigation by the RCPCH.

Consultants at GOSH have long used EGID patients for their own idiosyncratic research.

One is renown for over-use of TPN, and another for similar and for removing all food at the drop of a hat. Our consultant at least favoured normality and medication over extreme restriction, for that we were grateful. I have made friends with other families over the years, and have truly heard some horror stories. When I contacted the Royal College who undertook the review with our experiences, they said they were actually very familiar and in line with many others. They urged us to complain. Complaining however, involves sticking your head above the parapet, and there are always consequences…

Worse still though, this investigation has not only NOT been shared with families, but the comprehensive review of all patients that followed has been conducted without clarity and with considerable subterfuge.

Following the investigation it was decided that EGID no longer existed in its previous form.

But there remained the problem of what to do

with all their EGID patients.

Accusations of FII

These were subdivided into three groups and shared between three Consultant Paediatric Gastroenterologists to evaluate. These three assessed all cases, having been previously advised by Dr Danya Glaser, psychiatrist and specialist in FII - formally known as Munchausen’s Syndrome. http://www.expertsearch.co.uk/cgi-bin/find_expert?2184

Dr Glaser has an “interesting” previous career. Obsessed with FII her recent publications on it are now used nationally. Even the Royal College of Nursing has had them on their website for guidance. However her “catch all” description of possible candidates for scrutiny includes almost every parent I know. If you’ve ever blogged, fundraised, challenged a health professional, searched for health information on Google, been identified on the Autism Spectrum, had ANY mental health issues in your life, had a difficult birth… the list is endless…. you are to be under suspicion.

Shockingly Glaser has in the past even defended Dr Southall - struck off for experimenting on children then accusing parents of deliberate FII http://www.standard.co.uk/news/the-doctor-who-destroyed-families-southall-struck-off-for-accusing-parents-of-killing-their-children-6692927.html - to the GMC saying

“Professor Southall has made a very significant contribution to the welfare of children who have been subjected to maltreatment. His commitment to children and their wellbeing has been exemplary and remarkable. A strong leadership of the nature which Professor Southall has provided in this field has been an invaluable attribute.”

In an exercise which can only be assumed is to avoid taking the blame, the Gastro Department have used Glaser - who chaired ALL multi disciplinary meetings in the department -to shift the blame from the over-enthusiastic, cavalier doctors to families. Many parents have been accused of FII, including us, and some have even faced having their children removed.

NONE of these families have even been told that GOSH Gastro has been under such scrutiny- the pathetic letter to families tells you nothing. GOSH were told to admit more children for long observation periods to assess symptoms and decide if treatment - and indeed diagnosis - were genuine. But the manner in which this is carried out is appalling. Children were brought in to a tertiary care ward where people waited up to 9 months for a bed, where MRSA was rife and only one toilet is available for the whole ward….. and were given a carrier bag of snacks to try during their time there. Many of the children are too scared to try. Some know they have reacted to foods, some associate food with discomfort and pain, and others have been in appointments listening to consultants telling their parents they have food allergies and must avoid certain foods. ALL will have had debilitating gastro symptoms and are nervous of new foods. It’s a no-win situation. If they don’t eat you are a controlling FII parent - or if they do and don’t react, or react yet it is not accepted any longer as a true reaction. (All due to changes in hospital categorisation, not parent reporting.) And God forbid your child reacts whilst no one is available to observe - ie much of the time - because it’s then definitely false!

This is all EGID families at GOSH were offered. That or being threatened via letter with reporting to Social Services for FII if they didn’t stop all medicine and reintroduce all food. A friend received a letter stating this and was threatened at their appointment. We were already reported and “invited” for a two week admission. Three otherwise well children taking up 3 out of 10 beds on a tertiary care ward with the above “bag of food” plan. We declined - or rather the kids, one aged 15 - point blank refused. The *anxiety* it created was criminal, none had ever spent more than the odd night in hospital. It’s left scars to this day.

No one was been given any information beyond this letter all families received (which offers no information whatsoever) and the marginally more useful information on the Trust website. http://www.gosh.nhs.uk/news/latest-press-releases/2016-press-release-archive/review-gastroenterology-services-great-ormond-street-hospital.

Three consultants were asked to review these concerning EGID cases - "perplexing presentations". PALS refused to get involved and did not respond to parents, and Glaser seriously believed innocent doctors had been hoodwinked time and time again. http://news.bbc.co.uk/1/hi/health/7303038.stm

"We have become impaled, hooked on a few cases which have been used by the media to cast doubt on the extent of child abuse. We need to start thinking the unthinkable."

Yet how a psychiatrist can be leading the Gt Ormond St Gastro Department is quite beyond me. She is not a clinical Doctor, not a paediatrician and she is NOT a paediatric gastroenterologist. Yet somehow, she was suddenly the ONLY authority on whether parents were telling the truth - or whether children’s symptom reporting was genuine. And don’t kid yourself that admission means observation, these are busy wards with very sick children - there is little, or no observation. Just judgement.

Since then the department has been moved away from the infamous Rainforest Ward in the Southwood Building. Most EGID patients have been jetisoned, and research canned. We were completely vindicated, but the kids lost 18 months of care, and of course nothing has changed - because it wasn’t ever made up! The whole process has been incredibly stressful, and until now it has been difficult to say anything. GOSH have largely escaped any penalty and parents have had to put up and shut up.

Social Service Referrals

Obviously, referrals for FII should never have been the way a tertiary level hospital seeks to get out of trouble, blaming parents and avoiding addressing important issues is not only a coward’s way out but it completely runs contrary to their raison d’etre.

Yet it’s a symptom of a bigger problem.

Currently in the UK, 1 in 9 children under 5 are referred to Social Services. Of those, 1 in 5 are referred for suspected Child Abuse. Parents are suspected as a matter of course, it’s the default option. No easy answer? Suspect the parents. But is this REALLY the “Big Brother’ Culture we want to live in? Are we going to let parents take the blame for cavalier doctors, and professionals covering their backsides? Do we seriously believe that nearly 10% of the children in our country are being neglected, abused or maltreated? One child is removed every TWENTY MINUTES in the UK. 365 days a year. How on EARTH have we come to this? That’s an awful lot of “hoodwinked” doctors, and social workers following Glaser’s flow charts.

http://www.uclan.ac.uk/news/childrens-services-uclan-study.php

This doesn’t make comfortable reading. The UK reality is not in line with other European Countries, and I’m not sure it’s indicative of a society I want to be part of either. I’m guessing you are thinking (if you’ve read this far!) that no false accusations would ever get far. But a S47 or FII enquiry is done without the parents’ knowledge. You never get the chance to hear the accusations and refute them. They can be completely wide of the mark - you only have to look at the errors made in our care, and I have friends whose children’s notes have been tampered with to avoid doctors taking the blame. And what few people realise is that in the Family Courts parents have fewer rights than accused murderers in the Criminal Courts. You are guilty until proven innocent. Parents cannot speak, are not informed and have no means to appropriately defend themselves. Social Services are utterly unaccountable, with “professionals” like Glaser endorsing their every move.

The bizarre thing is, GOSH consultants are supposed to be professionals at the top of their game. Doctors who have reached the pinnacle of their career - or not far off. Yet we are apparently supposed to believe that these experienced professionals have been duped by a large number of unconnected parents from across the country in some bizarre mass FII conspiracy!

It’s utterly ludicrous!

As President Lincoln said:-

“You can fool some of the people some of the time, but

not all of the people all of the time.”

This “Post Truth Era” is a frightening place indeed. Desperate to make sense of an ever expanding, complex world in a global, technology based interconnected world, we have sought to explain our life experiences via statistics, predictions and trends. But as William Davies explained here in The Guardian https://www.theguardian.com/politics/2017/jan/19/crisis-of-statistics-big-data-democracy this ceases to be meaningful the larger the data sample. Individuals get lost in the process and descriptors apply to a relatively smaller and smaller average group. Trying to identify child abusers in this manner is an utterly meaningless, futile activity.

Dr. Lauren Devine explains eloquently in her research here http://eprints.uwe.ac.uk/29438/1/NewRethinking%20Child%20Protection%20Strategy%20-%20progress%20and%20next%20steps%20-%20Seen%20and%20Heard%20-%20Dr%20Lauren%20Devine.pdf that the self-fulfilling Theory of Child Protection is no more reliable than rolling a die in identifying children at risk, or those likely to abuse, with over-predicted risk running at 97%. The impact on families falsely accused is enormous. Family Law holds parents guilty until proven innocent, unable to have a voice and condemned by a system weighted heavily in favour against them. Add that to the mismatch with a society which believes only the guilty are scrutinised and you have a perfect storm.

The Future for Gastro at GOSH

July 2017 saw a Follow-Up Review by the RCPCH. Whilst some things had definitely been tackled by the department, unfortunately there seems to be an embedded culture of superiority and disinterest in working with others amongst the consultants. You can obtain a copy of the Review yourself, if you have a relationship with the Department, The number to call is 020 7762 6041.

What I particularly take issue with in the Follow-Up Review is the claim there has been no long-term damage to patients or families from the Departmental Failings prior to Special Measures in 2015, nor as part of the process to rectify the concerning problems uncovered by the RCPCH. In reality though, there has been no demonstrable benefit to children or families from this process. There has been no fulfilment of their Duty of Candour - no sharing of the results of the original investigation by the Royal College of Paediatricians. The losers in this entire process are the children and families.

Children who have had years of exclusion diets with minimal supervision (we had no NHS dietician for years, despite a tube fed child on elemental feed!).
Children with feeding tubes and repeat interventions. (Our daughter is now terrified of hospital interventions).
Accusations of exaggeration levelled against families when there was insufficient evidence for diagnoses given. (*surely* the responsibility of doctors?!)
GOSH Gastro refused to work with local teams so there was no local care to return to.
Children "cut loose" from the system, often denied access to NHS care - for example following our experience we had to wait 10 months for care to restart at our local hospital, one son waited two years for a Rheumatology referral requested by GOSH on discharge, he's still waiting for testing and treatment. We now have to privately pay for his orthotics as we don't live in the community catchment of our new local and cannot access NHS orthotics.
Diagnoses removed which explained complete symptoms which then all need retesting for and reconfirming.
Permanent evidence of Social Service intervention taints future treatment. This impacts on emergency care AND care for chronic illness. It colours all future involvement with health professionals.

I would challenge anyone from the RCPCH to claim our family has not been permanently affected, both by failings at GOSH and by their plan to put things right. GOSH gastroenterologists gave parents the impression they had defined an emergent disease and took ownership of their symptoms and care. They owe it to the children they profess to care for to provide appropriate ongoing care. After all, they would like us ALL to think their level of care is as their motto says-

The Child First and Always

Sadly that only applies if the hospital’s proverbial a*se is covered, and it suits the department's cavalier consultants. Otherwise you are cut loose with a local referral to Social Services.

Going Dairy Free

noreply@blogger.com (Twinsplustwo) — Thu, 15 Mar 2018 19:37:00 +0000

A good friend's daughter is embarking on a medically advised dairy free diet for her son and my friend asked me for some substitution tips. It occurred to me that recent posts have focussed more on those on very restricted diets, and whilst that is our reality there are many out there catering for single excursion diets - which can be just as daunting and stressful at the outset!

I wrote some suggestions down and decided it would be a good idea to publish them on the Recipe Resource!

First of all, the usual disclaimer! Children have complex nutritional needs and dairy products fulfilling many essential requirements. The vast majority of children outgrow dairy allergy, and those who are dairy intolerant are usually only temporarily so. Whilst nothing can stop an adult imposing restrictions on their own diet, you must take advice before taking such steps in a child's diet. Calcium, Vitamin D and other minerals - plus essential fats and low sugar make cow's milk a perfect food and drink for most children.

Getting Started

I have a "Basic Substitutions" page here with some information, but this article focusses on purely Dairy Free diets.

First, try not to substitute all dairy with soya products. Soya is high in oestrogens, and also highly allergenic in itself. It's not uncommon to develop an allergy to soya protein, and you increase that risk in an allergic child by substituting wholesale with soya. That said, if you are allowed soya it should mean you can more easily achieve a balanced diet without dairy products, without some of the sugar that is put in all free from foods.

When you take out food proteins, you remove flavour, so manufacturers replace it with sugar…. a concern which I have written about before. Most free-from biscuits and cakes are full of cheap fillers and “non-foods” so I always bake myself wherever possible.

A few things to remember

*ALL animal milks contain the same proteins (casein and whey) as cows’ milk, and lactose, just in different ratios. So you need to avoid ALL animal milks.

*“Lactose free” is not dairy free, and it’s almost always the proteins which people react to, so lactose free products are only for lactose intolerant individuals. These are almost never Caucasian people, and if so usually only after a bout of gastroenteritis and therefore only temporarily.

* Milk comes in many forms in processsed food. Processed meat usually has dairy products in. Anything which says casein, whey, lactose etc and powdered milk, condensed milk, buttermilk etc are all dairy products.

Cheese substitutes

- Violife is the most versatile, and behaves the most like cheese, there are many varieties. The downside is that there is no protein in it, so it’s not a nutritional substitution. https://violifefoods.com most of the supermarkets now sell this.

- Vegusto make vegan cheese which is nut based and therefore contains protein. Their No-Moo cheese sauce is fab! it’s currently mail order only but I by in bulk and freeze. https://vegusto.co.uk

- Sainsbury’s make their own dairy free products, including cheese which is soya based.

Milk Substitutes

- See my "Got Milk?" article for a full comparison of milk alternatives

- Always go for fortified to get the calcium etc

- For cooking avoid soya, it’s not heat stable and curdles. If we could have anything I would go for oatly or soya on cereal - UNsweetened is best, almond in cooking and rice milk occasionally as it’s v sweet.
- New on the market is oat milk powder, like these from UnHerd or Might Oat. This is life-changing for travellers who cannot be certain they can purchase safe milk alternatives at their destination, since with the water removed the produce is SO much easier to transport!

Butter substitutes

- By far the nicest is “Pure” Margarine, either Pure Sunflower or Pure Olive. The Olive is better for baking.

- I use the Stork gold wrapped blocks for baking

- Flora’s new free from spread is nice tasting but not great for baking.

Custard

- You can make custard with any milk substitute but rice milk makes a thin, translucent custard which isn’t very nice. Soya curdles as it isn't heat stable so oat or almond are best.

- Oatly make a delicious custard but it needs whipping first, or Alpro soya do one.

- Alpro do a set custard too in different flavours, soya based.

Ice Cream

LOADS!

- Soya Swedish Glace

- The Coconut Collaborative

- Booja Booja - expensive but tasty

- Ben and Jerry’s now do dairy free!

- Alpro do a dairy and soya free almond based choc ice cream which is fabulous.
- Sainsbury's allegedly now offer a new free from ice cream but I've not managed to get hold of any yet!

Yoghurts

- Previously you had to stick with soya or introduce coconut. However the lovely people at Oatly have now introduced a wonderful range of oat based alternatives. Their Greek yoghurt is fantastic, their crème fraîche very versatile in cooking too.

- The Coconut Collaborative make some delicious chocolate mousse pots, very rich but mine love them as a treat. Available in all supermarkets! There are lemon ones also.

- Redwood “Wot no Dairy” comes in a few flavours, but we often buy plain and add a teaspoon of jam or chocolate spread!

Chocolate

A word of advice - always taste new chocolate items yourself because some are just gritty with sugar and have little taste at all! Beware though as not all dark chocolate is dairy free.

- Hotel Chocolat make some yummy celebration chocolate!

- Moo Free chocolate make Easter eggs, advent calendars etc and bars of chocolate.

- Plamil make delicious dairy free chocolate which has soya in but is a more genuine "dairy" taste.

- Celtic chocolates in supermarkets and H&B

- “Nomo” from Kinnerton

- Choices dairy free tastes like milk chocolate, highly recommend!

- This is THE best chocolate spread usually available in Sainsbury’s but I haven't sourced it recently. I now buy the "Nature's Store" spread which is almost as good!

Biscuits

-So many available now, a word of warning though because "free-from" doesn't mean free from all allergens, and very often a brand name like M&S' "Made Without" is switched around to be missing wheat or dairy, rarely both.

Labelling

The main thing is to check, check check ingredients! Something might also be ok one week and not the next… meat products often have dairy in, it crops up in unexpected places. Another issue is the increasing popularity of vegan choices, which are being confused with dairy free. They might be ok if you are dairy intolerant, or not avoiding traces, but they are not always safe for dairy allergic people.

Some online supermarkets, like Ocado, let you select a dietary need eg dairy free and then browse their whole shop which contains safe foods. Tesco dairy free products are all listed here and currently they seem to to be the best for supplying a wide variety of free from products.

Lastly "Lactose free" is NOT "dairy free". Lactose is the sugar (simple carbohydrate) in dairy products. It needs the enzyme lactase to break it down - and many people of asian origin are lactose intolerant, lacking lactase to digest it. This is very rare in caucasian people, although transient lactose intolerance can follow a gastrointestinal bug. If you are dairy ALLERGIC you are reacting to the proteins, casein and whey. These are present in ALL animal milks, in different ratios. So goat's milk and sheep's cheese are not safe, neither is lactose free milk.

Good luck!

Devonshire Apple Cake - #EF #DF #SF #WF #GF

noreply@blogger.com (Twinsplustwo) — Mon, 19 Feb 2018 10:47:00 +0000

Unbelievably, my twins turned twelve yesterday. TWELVE!!! Scarcely seems possible. And yet, in so many ways they are proving extremely mature and sensible beyond their years.

Well, sometimes.

Their birthdays are always a little bittersweet. Usually when the children reach a milestone, or celebrate a birthday we think back on their early years, and I invariably fish out an older photo (or two) to post on social media. How cute they were! Except with the twins. They were so, so unwell for weeks - months - that their early photos bring pain and sadness, and not a little anger.

Despite a strong family history of reflux, despite suffering myself, my father also, despite knowing EXACTLY WHAT I WAS TALKING ABOUT when I took them to the GP at 3 weeks old, *nothing* was done for SIX MONTHS. Nothing. Just weekly weights, the odd blood test, the usual fobbing off - and the ward social worker visiting me to see "how she could help me" and "what I could change" to help feed them more/help them gain weight. Because of course, it had to be my fault - how could I be so naive to try and continue breastfeeding twins?!

But it stands to reason if you regurgitate every feed until it's time for the next one, you are not going to gain much weight. And if you are in awful discomfort from burning acid reflux which is so bad you develop a hoarse cry and torticolis, go rigid and display symptoms of Sandifer's that you may very well not want to feed. Because it HURTS.

Eventually, we had to go private, and the twins were given medication. We had tried an elemental feed but it was so thin that until the inflammation had been reduced, and their reflux slightly improved it wasn't going to stay down. So I embarked on a strict maternal exclusion diet and breastfed them, on new medications until such time as they were well enough to take the formula as a top up - and guess what. They started gaining weight.

It's really not rocket science.

And yet this is what happens all over the NHS. Twenty years after I dealt with this with my eldest son the NHS STILL blames parents - mothers - first, and thinks outside the box second. And using private healthcare brands you a diagnosis-seeking, desperate-for-intervention type of parent. Not a good image at a time when 20% of ALL under 5s are referred to Social Services and MBP or FII referrals are sky high. But I would do it again in a heartbeat, and no baby should be left to suffer months on end like they did.

Anyway... this birthday was all about CAKE! Both twins wanted a unique cake, to fit with their current favourite flavours. K loves apples and apple muffins. My Mum has always made a Cranks Apple Cake, from her recipe book dating back almost 40 years. Wheat and Gluten free is easy, as is dairy free, but egg free - and she had no egg replacer - is more of a challenge. The result was so successful that I thought I must share - particularly since some of my readers have children who cannot tolerate egg replacer!

It's best setting this out in stages, so there are two sections each for Ingredients and Method - make sure you have all you need, not just the first section!

Ingredients

Line an 8" tin with non stick paper (a springform tin or one with a release base works best)
8oz SR white gluten free flour (we use Dove's Farm, don't use a heavy flour for this cake)
4oz safe margarine (not all are good for baking, we use the Stork foil wrapped block)
4oz Demerara sugar (and a couple of tablespoons for the topping)
1 1/2 teaspoons each of cinnamon and mixed spice
2oz ground almonds
2oz finely chopped dates (which have been previously softened in boiling water)

Method

Soak the dates for half an hour in boiling water, then chop
Combine the dry ingredients
Rub the marge into the flour
Add dates

Ingredients 2

2 1/1 tbsp cornflour
1tbsp safe baking powder
1/2 pint almond milk, or alternative
3-4 cooking apples (Bramleys) peeled, cored and roughly chopped)
a little more gluten free flour

Method part 2

As soon as you have chopped the apples toss them in flour - this prevents them going brown and helps stop them sinking whilst the cake is cooking.
Put a couple of tablespoons of apple to one side, for the top of the cake, add the rest to the mixture with flour, dates and spices.
Mix together the cornflour, baking powder and almond milk, first making a paste then whisking the rest of the milk in.
Slowly add the milk/cornflour/baking powder to the rest of the ingredients and transfer to the cake tin.
Sprinkle the remaining chopped apple on the top, followed by the Demerara Sugar.
Bake for one hour at 190C, 175C fan

Allow to cool, do not attempt to take out of the tin beforehand!

Can be further decorated should you wish to do so!! My daughter is panda mad and made some fondant pandas to decorate her cake!

It will keep a couple of days in the fridge (if it lasts that long!) Or you can freeze in wedges.

Spanish Almond Cake - contains EGGS

noreply@blogger.com (Twinsplustwo) — Sat, 20 Jan 2018 18:32:00 +0000

Whilst this won't suit anyone with an egg allergy, it's perfect for coeliacs, those allergic to wheat/gluten or avoiding flour. There are only THREE ingredients, it's *really* simple to make and absolutely delicious! It works as a single, deeper cake, or as a birthday/sandwich cake.

Gluten free, wheat free, dairy free, soya free, contains only sugar, almonds (ground) and eggs.

Ingredients

200g caster sugar
4 eggs
200g ground almonds

Method

Beat the eggs and sugar together until pale and fluffy. This takes approx 5 mins in a mixer, much longer by hand.
Fold in the ground almonds
Transfer to either one 8" springform tin or two 6" sandwich tins
Bake at 180C (170C Fan) for 40 mins if in a single, larger tin or 25 mins if two smaller ones.

Allow to cool. The top may rise to form a "crust" which has a tendency to collapse after. Don't worry! It tastes moist and delicious inside! You can add raspberry jam as a filler, like in a Bakewell Tart, or cherries, or even chocolate. Dust with icing sugar and serve!

Luxury Mince Pies

noreply@blogger.com (Twinsplustwo) — Sat, 16 Dec 2017 14:47:00 +0000

I've had a few requests for this "recipe" - the inverted commas are because it's not entirely homemade, but the pastry was! I've experimented with numerous flours/mixes for pastry and it's always super crumbly, but this time I seem to be on to a winner.

For the pastry:-

I used the traditional; "half fat to flour" recipe, but the addition of coconut oil (to bind) and wet egg replacer necessitated a little additional flour. Apologies for the imperial measurements those who prefer metric but I have no time to convert at present! I might revisit this recipe and edit later...

9oz Doves Farm gluten free plain flour
4oz Stork block margarine (at room temperature) or other free from margarine
2 tbsp coconut oil, the white set kind at room temperature
Organ egg replacer for 1 egg

Be patient, this took a while to combine but made a pretty good dough. It was a little sticky and rolling is always tricky but you can rough cut and shape in the tins.

Mincemeat:-

Totally cheated on this one!!! Meridian make a delicious, free from mince pie filling so don't sweat the small stuff, this one's a winner. A teaspoon of filling in each pie case is sufficient.

Bake these open at 165C Fan /180C standard oven and leave to cool.

Once cool, I cut marzipan and fondant icing circles to make the tops, and sprayed with safe cake shimmer. You can make the marzipan or purchase it, unless you are avoiding nuts it's easy to buy both safe marzipan and fondant icing.

Enjoy!

Chickpea and courgettes fritters

noreply@blogger.com (Twinsplustwo) — Tue, 07 Nov 2017 18:30:00 +0000

This is a bit of a reworking of a previous recipe - to be honest this works with almost any veg combination although wet vegetables tend to make a sloppy mix that needs a lot of flour and they can end up quite dry. Sweetcorn is a favourite here, but this time I needed to use up some courgettes!

I baked two large potatoes in the microwave, peeled and roughly diced them once cool, part cooked the courgettes (so they were not too sloppy) and added them to a 400g can of drained chickpeas in my food processor. I added mixed herbs, salt and pepper to taste and whizzed them all together - but not so it was too smooth, just enough to combine.

Then roll large balls in gram flour and shallow fry as patties to look as above!

TIP: Don't worry if the mixture does end up a little sloppy, you can stiffen it up stirring in/mixing in some gram flour before making patties.

Hallowe'en Brownie Bites

noreply@blogger.com (Twinsplustwo) — Mon, 06 Nov 2017 20:20:00 +0000

A belated Hallwe'en post!

I made brownies from a fabulous new mix from Tesco last week and posted them on Instagram. Many asked for the recipe - but I'm afraid this was a cheat, I used the packet below from Tesco!

I'm now getting used to egg replacer, after 18 months and replaced the 2 eggs needed with Organ egg replacer. (Anyone else noticed they are selling two different types at present? One has a blue box the other yellow - and one needs two teaspoons and the other one? One is just twice as concentrated as otherwise it's the same......) I used a free from margarine and then poured the mixture into some hallowe'en cups to make "Brownie Bites"!

I must say the kids were really pleased, it was a lovely recipe!

NEAW17

noreply@blogger.com (Twinsplustwo) — Thu, 18 May 2017 11:23:00 +0000

This week has been the National Eosinophil Awareness Week. Largely USA driven, but in recent years following research and increased understanding into Eosinophilic Diseases there has been a strong supporting role from the UK EGID community, largely coordinated by FABED.

This year however, it's all been rather different. Supporting, treating and establishing good practice for an emergent disease is never easy. It takes individuals and teams taking a leap of faith in trying new strategies, putting their heads above the parapet and bidding for funds for research to support new theories. This last is a gargantuan task - as I've stated previously on this Blog, less that 1% of all research funding goes on gastrointestinal conditions. Absolutely NONE goes on paediatric gastrointestinal conditions. Although eosinophilic disorders do indeed affect adults (my father has EoE) adult treatments are less controversial.

In the UK, few medications are licensed for under 12s. Tertiary level consultants can, however prescribe the, - and many do, it's surprisingly common. But prescribing medication for an emergent disease in under 12s is VERY challenging, and should always be carefully monitored.

My Blog Stats bear out the fact that many come across the Recipe Resource looking for information on EGID - Eosinophilic Gastrointestinal Disease. I therefore feel in this week in particular I need to write something to give the little information those in the EGID community have to my readers.
Great Ormond Street Hospital for Children is the tertiary referral centre for many who suffer allergic gut complaints, and have over the years established themselves as a centre of expertise on EGID, trying to define it, better understand it, quantify it and treat it. Because it is such a newly defined - and even controversial disorder even consultants at GOSH have not agreed about treatment and - much to the consternation of families - patients with very similar presenting symptoms have been treated in very different ways. Medications not licensed for EGID have been used to suppress symptoms - very successfully in many cases, and attempts have been made to work with hospitals in the USA to research into this condition and underpin new treatments.

A few years ago I attended an APG seminar on EGID. It was hugely enlightening and hopeful. It felt we were heading in the right direction with our understanding of this newly defined condition. EoE is fairly well recognised, but EGID affecting the bowel less so. As a founder member of the GOSH Gastro Parent Network I decided to write this to help explain EGID to my readers.

The advice from APFED on EGID is pretty much unchanged:-

What Is an Eosinophil-Associated Disease? Eosinophils are a type of white blood cell and they play an important part of our immune system. Eosinophils help us fight off certain types of infections, such as parasites. They are named because of the characteristic microscopic stain that gives them a reddish color under a microscope. Many different problems can cause high numbers of eosinophils in the blood including allergies (food and environmental), certain infections (caused by parasites), eosinophil-associated gastrointestinal disorders, leukemia, and other problems.

However the situation in the UK is very, very different.

EoE is pretty non-controversial still in the UK, since there should be NO eosinophils in the oesophagus. Zero. But the threshold for diagnosis elsewhere in the digestive tract is less well agreed upon. Families have seen their diagnosis removed, replaced, or challenged as these thresholds change. Over the past two years close scrutiny has been given to the surge in EGID diagnoses and almost routine treatment of symptoms. A "rare" disease has become almost commonplace in some areas which has alarmed many professionals. Suddenly, it's the diagnosis no one wants to give, no one wants to support yet *everyone* has an opinion on.

Whilst we as a family have had direct experience of less than ideal care at times, by and large the focus has been on supporting the very real symptoms our children have. That is no longer the case. As Rachel explains well in her Blog post here many families previously supported to whatever extent at GOSH are no longer welcome, and neither is the diagnosis of EGID. Families have had no information, the rumour mill is rife and many have had treatment regimes cancelled, support withdrawn and children discharged with no explanation. Indeed, I for one would be interested to know the view of Nutricia on this change in direction on EGID. Nutricia sponsor NEAW in the USA and work with Apfed. Some GOSH Gastro consultants are also linked with Nutricia. How does the company reconcile these two opposing views of EGID?

So many questions unanswered.

So as a parent of children with non IgE food allergies (and one with a previously confirmed diagnosis of Eosinophilic Enterocolitis) at the coalface dealing with symptoms I couldn't care less what name you give them. But a diagnosis is useful in paediatrics because we have a "Name It or Fix It" requirement, where you have to keep testing to diagnose if the symptoms do not go. This in itself causes all sorts of problems, not least the ultimate flowchart dead-end where no diagnosis and no cure leads to one end point only - suspicion and possible referral to Social Services.

And this is what makes me so mad.

Doctors disagree all the time. But they have a professional responsibility to discuss and evaluate, to involve families and above all, to focus on the patient. The inability to name or cure should not automatically lead to suspicion, and referral to Safeguarding should never be used as a stick with which to beat parents when professionals disagree - yet this is precisely what is happening to far too many people in the UK right now.

EGID is therefore currently one of the most controversial paediatric diagnoses the UK. That controversy is having a huge impact on families who never cared about a name, never sought any particular intervention except perhaps that their child might feel better. The irony is that the people suffering as a result of these national changes in thinking are the patients. The children.

It's hardly progress - and this is probably one of the most depressing NEAWs ever. After all, as a friend said - Awareness requires acknowledgement that something exists.

The existence of EGID in the UK is no longer certain.

Homity Pies - introducing Voakes Free From

noreply@blogger.com (Twinsplustwo) — Wed, 29 Mar 2017 19:36:00 +0000

This is a recipe adapted from a childhood favourite. Many years ago, at the height of the 1970s a vegetarian restaurant called "Cranks" pended in London. In the 1980s I visited with my mother, and she bought their cookbook. One of our favourites was a small "Homity Pie" which was basically potato and veg in a pastry case topped with cheese. It's still my favourite kind of food, and I decided to reinvent it for my daughter.

I've had a few wonderful mail order recommendations recently which have made my free from cooking so much easier. The first is Voakes Free From . Their sausage rolls are amazing, my youngest son loves them, and his older brother is particularly partial to their pork pies. Although there is nothing ready made my daughter can eat their pastry has been little short of a revelation.

Voakes Free From - https://www.voakesfreefrom.co.uk

Those of you trying to make MEWS and Gluten Free pastry will have had limited success I suspect, but at LAST, here is a pastry ready made, freezes well AND ROLLS BEAUTIFULLY. What is even MORE amazing, it tastes delicious too. A real winner!

I should point out here - this is neither a sponsored post or one solicited by Voakes. They don't know me or that I am writing it. I firmly believe that anyone helping life easier for those of us catering for exclusion diets deserves a huge pat on the back. It's far too easy to make sugar-loaded biscuits and cakes but free from (and not containing soya - here's looking at you Sainsbury's!!!!) savoury food that is tasty and nourishing is hard to come by. I highly recommend them - excellent service too.

So I didn't make the pastry for this recipe. And I didn't make the cheese sauce either....

Vegusto is a company I have used before, but not for some time. Their cheese has nuts in so it isn't safe for all, and some have other ingredients in which don't suit everyone, but our issue was the strong taste which I - as a true cheese love, liked - but which my daughter hated. However, children grow up and I pretended it was a new product..... and she accepted the Moo Free Sauce quite readily!

Vegusto No-Moo Cheese Sauce

I was quite keen to persevere, since unlike the milder tasting Violife cheese, Vegusto No-Moo has protein in it.

So, on to the recipe. It's really, really simple.

Method

Roll out the pastry and using a large cutter and a deep muffin tin, cut the pastry cases out and place in the tin wells.
Par-boil potatoes, cool and roughly cut into largish chunks.
Part cook vegetables of your choice.
Mix with some cheese sauce (important the veg isn't too well cooked or it collapses at this point)
Fill the cases with the cases with the mixture
Grate some free from cheese (I did use Violife here) on top
Back for approx 20 mins at 180C

Tip - these don't freeze but are delicious hot!

Suggestion :-

I rolled another portion of pastry, filled a large pie dish and froze it in the dish (freezer proof dish). I now have a ready made case to fill with apple/other fruit or to make a savoury pie.

I cannot tell you how exciting it is to be able to handle free from pastry which doesn't keep breaking!!

Update!

noreply@blogger.com (Twinsplustwo) — Sun, 26 Feb 2017 21:00:00 +0000

I've been quite overwhelmed with the kind messages of support after my decision yesterday to delete The Recipe Resource and say goodbye.

In many respects, I do feel that there are other blogs which offer more, certainly which are updated more often than mine is now! However as a bank of recipes for those struggling on limited diets I hope it is still useful.

So I have been persuaded to "undelete" it (is there such a word?!) and it will stay. Who knows, it might one day get a facelift but for now it's here as a resource for those of you navigating feeding children on restricted diets.

The reason I started the Recipe Resource was to help others - and for that reason I've resurrected it. I'm immensely grateful to all my readers for their ongoing support!

This cupcake is from the Organ Chocolate Cake mix, made as cupcakes today. I really rate the mix, the cake came out evenly cooked and springy. A big success.

Chocolate Banana Bread

noreply@blogger.com (Twinsplustwo) — Mon, 14 Nov 2016 14:10:00 +0000

This is not a recipe I created from scratch, rather I adapted slightly a recipe in Pippa Kendrick's "Free From food for Family and Friends" book. I highly recommend it, it's given me lots of new ideas!

This is nut free, gluten free, vegan, soya free, yeast free and really, really tasty. I've made it twice now and it works best in the food processor rather than my Kenwood mixer, since the batter needs to be quite smooth.

Ingredients

2 tbsp chia seeds
225g gluten free plain flour (ideally not plain rice flour, it's quite friable)
1 tsp bicarbonate of soda
2 tbsp cocoa powder
100g soft brown sugar
2 large ripe bananas
125mls sunflower oil

Method

Turn the oven on to 200C (or 180C Fan)
Put the chia seeds in a bowl and add 4 tbsp water. Leave for approx 30 mins to absorb the water.
Sift flour, bicarbonate and cocoa into a bowl, then add the sugar.
Mash the bananas with a fork and combine.
Pour over the oil and the chia seed mixture, then whizz in a food processor to make a smooth batter.
Pour into a 1lb loaf tin (pre-lined)
Bake for 25-30 minutes
Don't cut until cooled - it becomes more moist and less crumbly!

Slow hand clap to the Food Standards Agency...

noreply@blogger.com (Twinsplustwo) — Fri, 04 Nov 2016 20:57:00 +0000

You know that popular meme of someone staring at a computer late into the night? Can't go to bed because "someone is wrong on the internet"? Quite appropriate..... except it's not bedtime and I *should* be focussing on the kids' homework, the child who is on the loo (he won't be going anywhere for around 45 minutes though, but then that's non IgE allergies for you...) and the fact that after the week I've had it really *is* Wine O'Clock and this could wait.

Except it can't.

Myself and many, many others, from Fabed, National Allergy Strategy Group, Adam Fox and his team of paediatric Allergists and Allergy nurses, based at St Thomas's hospital, numerous paediatric gastroenterologists here and abroad plus parents dealing with the reality of life with non IgE food allergies have spent years campaigning to increase awareness and understanding amongst health professionals, teachers and communities that food allergy is not confined to an acute IgE episode.

I wrote about the desperate need for increased awareness here . You would be *stunned* to know how many parents I know who have encountered health professionals who still simply do not understand how delayed allergic responses work, what FPIES and EGID are, or how cell mediated gut allergic responses cannot be tested for. The numbers of families damaged by poor or indifferent care, or those with little support for children at school, and even those hounded by Social Services because community professionals just don't "get" non Ige allergies. I've attended meetings for the All Party Group on Allergy before, and there are increasing numbers of people appreciating these issues - then the FSA railroads over all recent work in one ridiculous picture.

Yup, they've attempted to differentiate between food allergies and intolerances by reaction time, not even mentioning non IgE allergies. There is so much wrong with this I scarcely know where to start. Their sole defence is that they are trying to "simplify" things. But that's like listing a simplified list of political parties in Britain as Labour and the Conservatives. It's not simple, it's simply WRONG. it helps no one and subtley erodes the hard-won gains made by those of us trying to bring hope for our children.

If my daughter has half a slice of gluten free bread with egg in she becomes unwell several hours later and the response lasts days. If she has the tiniest amount of soya the entire response process which includes soiling and bleeding lasts up to a month. Just where on that chart would she fit? Or her twin brother who has long term bowel damage from non IgE symptoms and narrowly escaped surgical intervention years ago, whose non IgE allergic gut reaction to wheat in particular accumulates over days and weeks.

This isn't a simplified chart, it's an exclusive one, which excludes a significant proportion of those with food allergies.

We have to contend with the media spouting about the middle class disease that is food allergies, who never stop to think of the opportunity such an editorial presents for education, for explanation and enlightenment. I've contributed myself as a lay person to publications on allergy, which fail to accurately detail non IgE food allergies. Yet still the ignorance persists.

It's not even particularly new information. The National Institute for Clinical Excellence (NICE) has had their own chart since February 2011, which is here. THEIR chart is reproduced below. It's a bit small, but that's because you just cannot over simplify this, at least not in the way the FSA are attempting to.

So what *are* non-IgE Allergies?

Non IgE food allergies DO involve the immune system, but locally, in the gut. It is a cell mediated response rather than a systemic, whole body reaction. It isn't immediately life threatening, but the long term impact ca be significant. t is a local reaction and is rarely possible to test for. Gut allergies are often delayed, which is why food allergies are so traumatic and difficult to manage, requiring strict exclusion diets to determine responses to possible triggers. Imagine an eczema reaction in the gut - it's a localised response to an allergen (or a false allergen which the body responds inappropriately to) and causes a localised problem - no anaphylaxis, no outside response (although IgE responses are often present in addition in those with gut allergies) and is very difficult to diagnose. Wikipedia actually explains this very well here . Like I said, it isn't new, and there is NO excuse for the FSA being so slapdash.

So my advice to them is to get with the programme. Work IN the 21st Century, add a third column and revise your information. Or delete it completely, because quite honestly, you've just shown yourself to be out of date, out of touch and under-informed. Unfortunately though, that picture has probably done more damage than the impact its had on your reputation.

Socca bread (Farinata)

noreply@blogger.com (Twinsplustwo) — Wed, 26 Oct 2016 17:55:00 +0000

Reading through the fabulous "Free From Food for Family and Friends" by Pippa Kendrick, I came across "Socca bread", made from only gram (chickpea) flour, olive oil and water. This was a fabulous discovery, since chickpeas are one of the few protein rich foods my daughter can currently have!

I did some research on the internet, since the roasted vegetable version Pippa has wouldn't have been possible for us, and discovered it is really, really versatile! In France it is known as Socca bread, in Italy it is called Farinata.

You make it exceedingly thin, like pancakes - there is a great recipe here.

Alternatively, you can bake it deeper to make a more filling bread, which is what we decided to do.

Ingredients

150g Gram Flour
3 tbsp Olive Oil
250ml water
Pinch of salt

Method

Sift the gram flour into a mixing bowl. (Gram flour tends to settle and get lumpy.)
Whisk in the olive oil and water until completely smooth
Apparently the batter should ideally sit for at least 1-2 hours before cooking.
Pour into a flan dish for a thick bread
Bake at 180C for apprize 30 minutes until cooked.
Cut into wedges and serve!

Tip: This is so versatile, you can add roasted vegetables, olives, caramelised onions, bake it thin like a pizza or thick like a bread. It can be pitta bread texture or soft wedges. You choose!

UPDATE

Today I tried a thinner version of the batter, with just a little more water, and it made a lovely pancake. When the batter started to cook I added roasted courgettes, carrots and puy lentils to half and flipped it over. Apparently it was delicious!

Egg Substitutions!

noreply@blogger.com (Twinsplustwo) — Fri, 30 Sep 2016 19:06:00 +0000

So, we are officially egg free and I must say it's a bit of a steep learning curve. We have previously always been advised to keep the twins on eggs and it has been a valuable source of protein. Substituting that on a dairy and soya free diet is hard, especially when you have a vegetarian who is now pretty much vegan due to allergies to feed....

Because we hadn't trialled egg replacer, I have been using pear puree instead, which I was hugely sceptical about. However, I have had considerable success - although I seriously doubt I could substitute more than a single egg successfully this way.

I've come across several ideas for egg substitution, all work slightly differently with varied results.

Chia seeds soaked in water make an excellent binding agent, but not the best raising agent.
Soy is not an option for us - and many others too, so I haven't tested this.
Ripe banana works in a similar way to the pear puree we've tried, and since we have passed the banana trial this is my fall back option! This banana muffin recipe only has one egg in because the bananas act as a raising agent too, and could be easily substituted unlike recipes which contain several eggs.
Ground flax seeds apparently give quite an earthy texture, and can be heavy - but many recommend them.
Applesauce - again, like the other fruit options it works, but perhaps not for more than one egg.
Egg Replacer - I trialled Organ's egg replacer with my daughter last night. Not brilliant, a bit heavy but ok. She prefers the pear option!
Go without!! This recipe really works and as a large cake recipe is virtually unbeatable as an egg free option. Also, research "Crazy Cake" which is very similar, these recipes are from the days when rationing and scarcity made egg-free recipes a necessity.

The chart below is widely available on different sites and has more ideas.

It's really a case of trial and error. I've made these pancakes very successfully with a pot of pear puree, you cannot taste the pear and they rise beautifully.

The following has even more helpful information, I've discovered you really have to bite the bullet and just experiment, and also try new ways of doing things that just don't use eggs. Good luck!

It's been a while... #FewFoodDiet

noreply@blogger.com (Twinsplustwo) — Fri, 02 Sep 2016 21:58:00 +0000

I've been really slack about updating - but the truth is, this is HARD. Really hard. Not being a stranger to exclusion diets I knew it would be, but nothing prepares you for the reality that is an indignant, stroppy tweenager who understandably wants to be like her friends and is facing a *much* longer term than expected of a very limited diet.

We've made progress, mostly by sensible planned means - but I confess in absolute desperation we tried some BFree rolls before every ingredient had been tested and thankfully, these are ok. This success not only brought a bumper set of accepted foods but a real possibility of a school packed lunch! This is not to be sniffed at, in a school where packed lunches are not permitted, she really will be the *only* child having one, and if it's as near normal as possible that matters. A lot.

We've done well with carbs. Protein - not so much. And she's now completely refusing every possible (sneaky) attempt to get chickpea into her diet as it's now "revolting". This is a stage all parents face on similar exclusion diets, the child is understandably feeling utterly out of control and I completely understand why she needs to do this. She's telling me that whilst she accepts the restrictions imposed by her medical team, she still calls the shots. Her body - her rules.

This, in my opinion, is vitally important to appreciate. We couldn't have embarked on this without her consent. Giving a degree of control, where appropriate really helps though - for example, blood tests really panic her, causing a rapid escalation into anxiety which she can barely cope with. So we've now adopted the policy that she has control, she makes the choices, but she needs to understand why they are necessary. On the whole it works too. She tells the doctor or nurse where they are allowed to put the needle (hand, arm etc) and whether she has cream, spray or nothing. Within reason she has the right to refuse too - although she hasn't yet, because she's in control and is actually pretty sensible for a ten year old.

So we've also followed her list of priorities for food introductions too, which sadly hasn't included much protein! We've made pancakes (above) using a pot of pear puree instead of egg, my fruit, cashew and seed bites with a few alterations and she's done a fair bit of experimenting too. She enjoys the BFree pittas with lettuce, sweetcorn and carrot chopped inside, with some Violife cheese in. I just wish there was some protein in it!

On the (hugely) positive side, when she's not reacting to new foods, I have a daughter who barely refluxes. Seriously. Hardly at ALL. After 10 1/2 years of moderate to severe reflux this is life changing - and if the unpleasant bowel and urinary symptoms are indeed delayed and related, we could be looking at one seriously healthy and happy young girl.

Which makes it all worthwhile.

When things don't go to plan!

noreply@blogger.com (Twinsplustwo) — Sat, 13 Aug 2016 17:55:00 +0000

It's been a rollercoaster couple of weeks here on our few foods diet journey. K became unwell with a rather nasty urinary tract infection and ended up on strong antibiotics. She's allergic to penicillin and the one she was given didn't agree with her tummy unfortunately. This really messed up food trials since we couldn't properly trial whilst she was on them - for ten days.

To make matters worse, we were away for a few days - our only few days away this summer - and she desperately wanted to enjoy the treats her twin brother was able to have, however limited! He was brilliant, and we even had real tears of compassion on one occasion as he felt so sorry for his sister. We have also had tears from her, and meltdowns, anger, frustration and plain sadness. It's not an easy road.

On our third day away she ate nothing in protest, and then said she wanted some of my food that evening or she wasn't eating the next day either. She can be VERY stubborn!! In desperation I didn't stop her - and the vegetarian bean mixture she had two spoonfuls of caused her reflux and other symptoms to *really* flare. In some ways this was harder, because she had control, but it didn't do her any favours and she felt utterly defeated.

We've got over this (massive but not unexpected) hiccup and have since successfully trialled pea protein which is truly fabulous as she can soon hopefully have her Violife cheeses and the Wot no Dairy? yoghurts back. Coconut needs to be soon on the hit list to facilitate these, and apple. However since she reacted to that meal of mine we also have a list of possible/probable culprits comprising onion, garlic, pepper, haricot beans and lentils to get through.

Diets like this are incredibly difficult for anyone, for kids it can seem arbitrary and unfair even if you totally agreed to it in the first place. When your peers, friends and twin BROTHER for goodnessake can eat lollies, chocolate and Haribo and you can't, the world is a very unfair place. We have limited his treats too - and ensure he has them out of sight but as she said today

"That's kind of irrelevant though, isn't it? Because I *know* he could have them, if you gave them to him. I have lost so many choices."

Out of the mouths of babes...

She did have a choice of course - this WAS her choice, and it's proving incredibly worthwhile. But that doesn't make it any easier, and although she will admit having significantly less reflux is "pretty cool", she's still a tweenager with attitude and I'm her emotional punchbag. And when you are that age, life is rarely "fair".

Distraction is definitely the best policy, and we are keeping busy!

Potato, chickpea and cashew fritters

noreply@blogger.com (Twinsplustwo) — Wed, 27 Jul 2016 18:51:00 +0000

Another attempt at varying my daughter's diet!! We have successfully trialled and tolerated corn, so officially we are on 7 foods, but this is one without corn from earlier in the week.

If your foods are different, maybe you can substitute? Hopefully these suggestions will offer some ideas for anyone on a few food diet, even if your foods are not the same as ours.

Method

Either peel and boil 2 large baking size potatoes, or cheat like me, microwave them, allow them to cool then peel them!
Blend half a tin of chickpeas in the food processor
Add some cashew cream and mash together
Form into balls and roll in rice flour
Shallow fry

TIP You could also add a vegetable of your choice, carrot is our vegetable at the moment but my daughter is enjoying it separately.