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Celiac Disease - Support Groups
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Discussions concerning celiac disease support groups and support group meetings.

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    • I do est out occasionally - but not indiscriminately.  I am careful to choose places that under stand gluten free.  And places that the food is naturally gluten-free, helps, too.  Celiacs can't just eat something that should be gluten-free and hope it is.  We have to use some common sense and ask questions.  
    • You are right that the next step is an endoscopy, which still is the "gold standard" in diagnosing celiac disease.   However, for various reasons the endoscopy is not done because financial contraints  or long wait times (up to a year!), or too ill to proceed.   You have two positives.  You only need one positive to move forward.    The TTg tests  do not need to be positive for a diagnosis (which requires a positive on an antibodies test which you had and an endoscopy).  My TTg tests were negative and I only had a positive on the DGP IGA, yet biopsies revealed a Marsh Stage IIIB (moderate to severe damage. http://www.cureceliacdisease.org/screening/ Unless your PCP is a celiac expert (unlikely), I would insist on a GI consult.   Please find one who is celiac-savvy.   keep eating gluten daily until all testing is complete (biopsies done).  You never know if lab results are going to get lost.  Besides any celiac testing requires the patient to be on a gluten diet.  In the meantime, keep on researching.  Only YOU can be your best health advocate!  
    • I'm having some issues, that I didn't really even know I was having until the blood work showed them. Retracing my steps, I eat very strictly gluten free at home. I eat too much dairy (which is not only a problem for many celiacs, it is also not an anti-inflammatory). The husband and I have eaten out a lot over the last three years of my diagnosis. I guess I have not been overly cautious as I should have been, which I'm guessing could be my problems (although I am seeing the GI doctor tomorrow). So, I'm wondering if anyone here no longer eats out ever? Were you eating out and realized you were still doing yourself damage? 
    • I have been gluten free for three years and I had never *noticed* any neck swelling... but recently at a routine appointment they noticed my neck was swollen. Thyroid ultrasound and thyroid blood work was good. I went to my primary care doctor and she did some blood work. Slight elevation in platelets, elevated C reactive protein, somewhat anemic. Going to GI doctor tomorrow to get some more input into this. Tracing my steps, I bet I cross-contaminate myself way too often as the husband and I eat out too much. I guess we will see....
    • Hello!  How long have you been gluten free? A lot of celiac patients gain weight when starting gluten free diets, for various reasons. Surprisingly, many times their diet becomes more unhealthy calorie-wise than it ever was! I am living proof of this. I have several "kick start" diets I recommend to all my gluten-free friends. If you tell me more about yourself and what kinds of foods you like, maybe I can help?    
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