Fabed from the Beginning - Guest Post

Unless you are new to the Recipe Resource, you will know that this week is EOSINOPHIL AWARENESS WEEK which is being co-hosted between 

APFED in the USA and FABED here in the UK. 

FABED is a wonderful charity which support those of us living with the confusing nightmare that is all too often EGID/ Simply put, EGID (Eosinophilic Gastrointestinal Disease) is an inflammatory condition thought possibly to be autoimmune. It involves the immune system, in a local response to food and environmental proteins. These ARE allergies, but like Coeliac Disease, Crohns or something like eczema it's a local reaction, not a systemic (whole body) response so you cannot test for these types of allergies. EGID can only be diagnosed by Biopsy.  

Here is the story of the wonderful Lucas family, dealing with multiple cases of EGID and how FABED was started.

FABED from the Beginning

Back in the olden days when Emma-Kate asked us to write a guest post for the excellent Recipe Resource (well it seems that long ago!), we said “No problem, will have it to you in a flash”.  Well it’s finally here, so as every one knows it’s now time to sit on the carpet in a circle, legs crossed and listen to the story... (or pour a large glass of something, you may need it by the end!)

FABED was conceived in 2005 and became into being in 2006.  It was the brainchild of 2 families (Lucas and Cordell), after visiting the APFED annual conference and leaving a little shell shocked.  As to the why we felt the need, it is important to understand the family story.  The Cordell family story that started the whole chain reaction is here, we have never really told ours, what follows is a VERY abridged version (honestly, this really is the short one) of the Lucas family WHY?

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.

May 19th-25th is Eosinophilic Awareness Week

Next Week is Eosinophilic Awareness Week. Read about EGID here.

Gastro research is drastically UNDER FUNDED. It is not "glamorous" and rarely on the radar for celebrities and focus groups, and rarely attracts public interest unlike cardiac care and cancer research. Gastro conditions are badly neglected in the UK when it comes to research funding allocation but without research treatment and outcomes are not likely to improve much.

Approximately 1% of the total amount of medical research funding available in the UK can be accessed for Gastro research. There are currently no listed projects specifically for Eosinophilic Disorders on the National Research database. GOSH are running a Gastro Research Project that will include related conditions/problems.

FABED is the main UK charity supporting families with members (adult and children) who suffer from eosinophilic disease.

FABED are UK partners supporting the United States Eosinophilic Awareness Week next week.This is coordinated by APFED. Last year they made this video to promote awareness.

Read more about Eosinophilic Diseases here.

Next week, do something to raise awareness. Tell someone about EGID and the appalling lack of funding for gastrointestinal disorders in the UK.