Stephanie Lawrence

I was diagnosed with Celiac Disease in December of 2006. The GI doctor that diagnosed me told me nothing about the disease. He told me to ask my family physician. My family physician told me to look it up on the internet. Nine months later I have had two sugeries to remove organs that I can live without, in hopes it will help my pain, though it doesn't. I have severe intestinal spasms, esophageal spasms, and recently have had life threatening liver enzyme levels with no answer. My father in law found research from the universily of chicago with very interesting information. when i took it to my NEW GI doctor he negated all of the research. I need help.

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possible resource for you

Posted by Alycia Shilton-Lloyd at Oct 23, 2007 09:52 AM

Dear Stephanie,
I'm sorry to hear about your case -- I understand that your frustration is (unfortunately) common in adults diagnosed with Celiac Disease. Your GI should have told you, and you may know by now, that currently there is no known treatment for CD, other then avoiding all products that have gluten (which can be very hard...but http://www.celiac.org/lifestyle.php is a good place to start). Basically, Celiac disease is an allergy to gluten (which is found in wheat, rey, and barley.) Every time you eat gluten, your body thinks that you have been invaded by a bad foreign organism, and so mounts an immune response against the gluten protein inside you. When you get a cut on your hand, it turns red and puffy and hot -- that's your body fighting off the bacteria infecting the cut. Since you have a gluten allergy, your body is doing that INSIDE your GI tract (imagine what THAT looks like) because it thinks gluten is trying to infect you. You need to eliminate all gluten from your diet to avoid this immune response.
I've recently heard of a new biotech that's looking in to celiac disease treatment: www.alvinepharma.com. While they don't seem to have a product out on the market yet, they probably know of key doctors in this field. Columbia University has a Celiac Disease Center -- they might be able to refer you to a GI that understands this disease and can help you. The NIH also has a Celiac Disease site: http://www.celiac.nih.gov/

Good luck. Get a doctors that knows what CD is!

Celiac

Posted by admin at Oct 29, 2007 01:25 PM

There are several biotech companies working on a drug for the prevention of the gastrointesinal toxicity of those allergic to gluten. One is Alba which is focused on closing the junctions between intestinal cells so as to prevent an immune response. The other as is mentioned above, Alvine in Palo Alto that is providing supplemental dietary enzymes to digest gluten before it can pose a problem. Very different approachs -- let's hope both are successful.
Admin