FYI - I sent an email to the Director of Communications at the National Celiac Awareness Foundation, because they don't mention MC on their site. It seems they are making plans to. They invited me to submit a patient story about my experience with MC. I'm not sure I want to, but maybe I will. Anyone else interested?
On Thu, Jun 7, 2012 at 11:46 AM, I wrote:
Hello,
I just perused your website for the first time after being referred from the DC Celiacs listserve. It is a lovely website with lots of useful information, but I was absolutely SHOCKED not to see any mention of Microscopic Colitis (Lymphocytic Colitis and Collagenous Colitis) in your “Related Diseases” section. In fact, I ran a search for “Microscopic Colitis” and found only one mention in a patient’s story:
http://www.celiaccentral.org/personal-s ... bid--5566/
I imagine this is a simple oversight, and I hope it can be corrected soon. As folks on your staff must know, MC often goes hand-in-hand with Celiac Disease. I’m not officially diagnosed with celiac, but I have severe gluten intolerance, celiac genetics, and LC. I represent an on-line support group of more than 1,000 people with MC who have discovered that eliminating gluten and other food intolerances (dairy, soy, others) is the key to achieving remission, often without the use of medications. MC can be a debilitating autoimmune illness (like having a stomach flu all the time) and GI doctors are clueless about how to treat it. Some enlightened/curious docs are just now awakening to the association with diet. Surely cases of “refractory celiac” and yet to discover their additional food sensitivities.
I was seen by Dr. Alessio Fasano in Baltimore, MD to see about getting a celiac diagnosis after I had already begun the GF diet. He did not think it was worth attempting a gluten challenge to find out. He said, “We used to think celiac disease was only limited to the small intestine. Now we know otherwise.” He acknowledged that MC was basically celiac of the large intestine, and they are both tied to the leaky gut/permeable bowel phenomenon.
Please let me know if you will add MC (CC and LC) to your website under the associated diseases. I would be happy to assist you in developing content for it.
Her response:
From: Cheryl McEvoy [mailto:cmcevoy@celiaccentral.org]
Sent: Monday, June 11, 2012 3:15 PM
Subject: Re: Microscopic Colitis??
Hi,
Thank you very much for your feedback on our website. We are in fact working on web content related to non-responsive celiac disease and microscopic colitis that we plan to post on our website toward the end of this summer. I will be happy to share that content with you once it is posted. I hope you will be able to share it with your group at that time!
I would like to invite you to share your personal story, especially as it relates to microscopic colitis. We would be happy to post that and link to the new content on our site once everything is ready. Please let me know if this is something you would be interested in.
Thank you,
Cheryl
My outreach to the NFCA
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