Celiac Disease. I’m starting to come to terms with it. I’m starting to not think about it so much, just like the participants in the study I conducted last year said I would. When I go shopping I know what to buy. When I invite my friends to dinner I know where to go and who to trust. For the most part, I’ve even had the chance to slow down a bit with explaining it to people - most of my friends know all about CD after the last three years of listening to the recounts of my new discoveries.

So you can imagine my surprise when my friend Richard sent me this article. It’s about the three specific toxic peptides associated with CD. They are important because they are what people with CD react to the most - they are the toxins that create the autoimmune reaction.

Immunotherapy exposes people with CD to small amounts of the toxins to encourage the development of natural tolerance, just like for other allergies. The article doesn’t name the peptides, or any scientific information really, but it does say that they expect important headway in immunotherapy for CD after this discovery. 

So the question remains… would you do it?

Dear Jamie Heywood and associates,

My name is Claire, and I’m writing from Victoria, Canada. I watched a TED
Talks about your website this afternoon. I’m very interested in the Patients
Like Me project, and would like to propose adding celiac disease to your
list of included ailments for patients using your site. It would be a useful
and necessary addition for the following reasons:

-CD is in 1% of the world’s population, and is distributed evenly across the
globe. Many families are affected by this major hidden autoimmune disease.
-CD is correlated strongly with mood conditions, epilepsy, MS, and chronic
fatigue syndrome (all of which are on your website).
-85% of people with CD do not know they have it (with people with the above
conditions, allowing them to share that they have CD could get others
diagnosed).
-CD has both typical and atypical symptoms. This makes it difficult to
diagnose (the average time between symptom onset and diagnosis is 11 years
in the USA).
-The celiac community lacks data on healing time, the associated and
extensive symptoms, and on how CD affects individuals on a daily basis.

I recently finished an honours thesis in health geography on how CD affects
physical activity in adults. No one (according to my research) had studied CD and physical activity before. This website would considerably extend my research. If I can do anything to help, I would be happy to contribute.

Please consider my proposition. I don’t know how much work it would take,
but I would be honoured to promote the website on my gluten free blog, in
celiac newsletters across Canada, and on international celiac websites if
you choose to include the disease in your possible conditions.

Thank you very much for reading this message. I wish you the best of luck in
your research.

Sincerely,

Claire