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I have just viewed the new website for the University of Maryland Center for Celiac Disease. They are doing a great service for so many. It is stellar in explanation. In listening to the testimonies-- (great job, Richard Paul) I have to say that I am near tears. I so wish I had had such information six years ago. I don't wish what happened to me and to my mother, to happen to others.  I went to just a few doctors when I got so very sick. I am amazed at the people who stuck it out, kept seeing doctors. I was too tired, and as one of those giving a testimony said: You have no idea how sick you were before you get the diagnosis and go gluten free. 
 
I feel as if the medical community failed me miserably, and in many ways still does, as often does the celiac community at large, because I am not a blood-tested, biopsy-proven case. I had 16 out of the 30 symptoms listed! My diagnosis-- indeed first hearing about celiac--came from a clinical nutritionist that I sought out for help, and who also happened to have celiac disease. When she heard that I had begun to feel some better by going low-carb, and that my mother, who joined me in the low carb diet, had stopped having diarrhea, she pinpointed the problem.
 
From the the nutritionist, I returned to MDs. I went to several doctors trying to get the bloods tests; the first doctor did one test, an outdated one, and told me I did not have celiac. I was on an HMO, and she did not want to send me to a gi. I did not have the energy to deal with the system. By then I was trying the diet, and I felt as if I had been saved from the grave. Five months later, I did end up finally seeing an internal medicine specialist who was recommended as knowing about celiac, had it himself. He told me there was no need to have any of the testing, to just stay on the diet. So an MD was at the heart of me never being tested, never even seeing a gi, despite the fact that I was still struggling with fatigue, had a ferritin reading of seven, and gastrointestinal difficulty. I struggled mightily for the first year gf to not lose my career and to regain some energy. It has turned out that I was also hypothyroid and two years later diagnosed with Sjogren's
 Syndrome. I am grateful for this list-- for all who generously share their experience, strength, and hope in living with celiac. I'm grateful for those who work to change the system. With all I have learned here, I have continued to regain wonderful health, much as I have never known.

If any of you doubt your condition, or get tired of the demands of the diet, just go the the Center for Celiac Disease website and listen to the testimonies to be reminded.
 
CurtissAnn in OK

www.curtissannmatlock.com

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