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.

The All Party Group for Allergy meeting 16th October 2013

Yesterday I attended a Meeting to discuss Allergy at the Houses of Parliament. It was a collaboration between the All Party Parliamentary Group for Allergy and the Parliamentary Office of Science and Technology  supported by Allergy UK. The meeting was to discuss progress in Allergy in the UK since the Lords' report of 2007. (More details here.)

Dr Adam Fox (Joint Clinical Lead for Allergy, Consultant & Reader in Paediatric Allergy Guy's & St Thomas' Hospitals ) explained how whilst Allergy is not new, its incidence amongst the population is increasing exponentially. Whilst it was a rare phenomenon when described in the early Nineteenth Century this is sadly no longer the case -with the incidence of allergic disease higher in the UK than any other country in the world. There has been considerable progress in joining up care improving transition from paediatric to adult services, and in beginning to address equality of availability and access to services across the country but there is still a long way to go. GPs are not trained to support allergic patients and too often symptoms are partitioned and dealt with singly rather than a holistic approach with specialist allergy care at the centre. There are only 20 specialist Paediatric Allergists in the UK at present, and only 28 Adult Allergy Specialists. Many US cities boast far more.

Recent NICE guidelines have been issued (Feb 2011) to advise on diagnosis and assessment of food allergy in children and young people which, if taken up would greatly improve the situation of many, many children and young people across the country. However, as GP Dr Matthew Doyle reminded everyone, GPs receive many new guidance documents on a weekly basis

Unfortunately there was little time for meaningful questions and I was unable to publicly ask the burning question I had nurtured all afternoon-

"What is being done to address the relative lack of progress in both awareness and understanding of delayed non IgE allergic reactions amongst the medical professionals?"

Because all too often I encounter ignorance about delayed reactions - the assumption that if it isn't an IgE response, cannot be tested for it isn't an allergy. There is considerable research into cell mediated responses and they are detailed extremely clearly in the NICE guidelines - yet they are unread, ignored or rubbished.

It's a great document. I recommend anyone dealing with delayed gut reactions in particular - which include EGID, Ulcerative colitis, Chrohn's, Coeliac disease, allergic gut disease, multiple food intolerances to read it.

I was also lucky enough to hear Ruth Holroyd speak, from What Allergy? What Allergy? was voted in the Top 5 UK allergy blogs by Cision UK and regularly gets 2000+ unique visits a day with some blog posts getting hundreds of comments each.