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classic pattern is for the symptoms to initially improve quite dramatically when the (initial) offending proteins are withdrawn (commonly Milk/Dairy, Egg, Wheat and Soya, known as a MEWS free diet) only to escalate as the immune system finds a new target.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?