Wednesday, 4 December 2013

Coeliac Disease and a “gut allergy” to Gluten. What’s the difference?

From our background of complex gut allergies/immune responses I find the topic of Coeliac Disease particularly interesting. People “get” Coeliac Disease. It might often be tricky and time consuming to diagnose, but it is well understood by many health professionals, has a set diagnostic criteria and is widely recognised. To the extent that a formal diagnosis will earn you gluten free foods on prescription.

The NHS Choices website says it is an autoimmune condition - which it is, and it is a type of Delayed Hypersensitivity, explained well on Wikipaedia here.
“Coeliac disease is what is known as an autoimmune condition. This is where the immune system – the body’s defence against infection – mistakenly attacks healthy tissue.
Coeliac disease isn't an allergy or an intolerance to gluten.
In cases of coeliac disease, the immune system mistakes substances found inside gluten as a threat to the body and attacks them.
This damages the surface of the small bowel (intestines), disrupting the body’s ability to absorb nutrients from food.
Exactly what causes the immune system to act in this way is still not entirely clear, although a combination of a person's genetic make-up and the environment appear to play a part."
NHS Choices

This is not so very different from EGID (Eosinophilic gastrointestinal disease) although the latter rarely receives half the understanding that Coeliac Disease does, despite being far more complex and overwhelming for the sufferer. And yet - and this is the bit which *really* puzzles me - just like Coeliac Disease, EGID is NOT an IgE allergy, NOT an intolerance, and is actually a delayed, Type IV hypersensitivity - a cell mediated response and currently thought to be autoimmune in nature also.

In Coeliac Disease, as with other well known autoimmune Type IV/cell mediated responses involving the T cells in the immune system like Type 1 Diabetes, Hashimoto’s Thyroiditis (which I have), MS etc the body mistakenly targets a foreign protein. In this case - gliadin, found in gluten.

In Eosinophilic Disease, the target protein is more likely to be pluralised. And the number and severity of responses also increases over time. In fact, for many the classic pattern is for the symptoms to initially improve quite dramatically when the (initial) offending proteins are withdrawn (commonly Milk/Dairy, Egg, Wheat and Soya, known as a MEWS free diet) only to escalate as the immune system finds a new target. In addition, attempting to reintroduce a previous offender frequently results in a far more prolonged (think weeks) and severe response for the sufferer.

According to GOSH, EGID is reaching almost epidemic proportions. It is NOT a rare condition any longer, although the severity of symptoms obviously varies hugely. And yet….. there is currently NO UK RESEARCH FUNDING  for this disease!!! Less than 1% of ALL medical research funding goes on (very unglamorous) gastrointestinal research and none of that is focussed on diagnosing, classifying and treating EGID - let alone evaluating best practice. 

EGID costs a fortune, in elemental feed for the severely affected, in hospital appointments, admissions, surgeries, time missed from work for patients and carers, from school, and most importantly of all in the HUGE impact it has on the quality of life of sufferers. 

I can't photograph the pain or the bowel symptoms but just to give you an inkling of what those with EGID go through if they eat a food they cannot tolerate - this is my daughter's tummy "normally" and after ingesting a tiny amount of gluten. It is *so* uncomfortable, makes her gastro-oesophogeal reflux so much worse, causes a host of other unpleasant and embarrassing symptoms and considerable pain.




















What is so hard to understand I wonder? Delayed Type IV Hypersensitivities are well understood. Coeliac Disease is pretty well understood. Autoimmune conditions could do with some work but we don’t question their existence - and yet STILL, EGID carries a label akin to “Witchcraft” or even suspicion of Munchausen by Proxy with it in some circles - including amongst top health professionals.

Isn’t it time we dragged ourselves out of the Dark Ages and spent some time and money on checking it out?

20 comments:

  1. Thank you for the information and advice, so useful for many children.

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  2. Thanks for the post. Hope people will read it and understand!

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  3. My brother has Crohn's Disease and son has food allergies so I can sympathise in the whole lack or research.It seems the sufferers understand the disease more than the doctors sometimes.

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  4. Thank you for this post. I didm't know about EGID at all before reading your post and I can't believe it's so wide spread and yet no one is researching it. Crazy.

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  5. I'd never heard of that before, very interesting.

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  6. Thanks for this info I wasn't aware of all of this, looks like more awareness should be around. To have health professionals imply munchausens must be so upsetting for parents with a child who needs help!

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  7. Thanks for all the comments - yes it's very frustrating that gastro issues are rarely given the publicity and consequently research funding they deserve, especially so called "emergent diseases" like EGID .

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  8. Sounds horrible - Although I've heard of it before I didn't know a lot about it - very informative post!

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  9. Great that your highlighting this issue, I don't know anyone who suffers from the disease but I do know it's very hard to get a proper diagnosis and treatment. The more people who speak up, the more they will have to listen.

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  10. Your poor daughter must be so uncomfortable. It would be great if gastro issues did receive the publicity and research funding they so desperately need. It must be so frustrating for you. Let's hope that changes soon.

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  11. I must confess I had not heard of EGID before. Very informative, thank you.

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  12. A great post. My mum has a severe allergy to wheat/gluten x

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  13. I have to admit I know of both but wasn't sure of the ins and outs and difference. One of those things that, like many, a lot of people only look in to when they are directly affected. Thanks for explaining x

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  14. Poor little bean! I agree, knowledge is power. Dismissing peoples discomfort isn't going to get the root of the problem.

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  15. There's far too much misinformation floating about - posts like yours are really important. Thank you for sharing this.

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  16. I suffer with a similar disease and really feel for you and your daughter

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  17. Going to share this with a friend as it seems like a really useful resource. Thank you!

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  18. Your poor daughter, that looks really uncomfortable - I have not heard of it before! Hope they start funding research soon....keep shouting!

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Many thanks for taking the time to comment!

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