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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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    • Just wanted to add, that when my friends or family want to eat at a restaurant that I am not sure about, I bring some snacks and then order a drink.  It is all about the company, not the food.  
    • Based on the information you have posted today, the most likely probable reason for your being ill is that you are getting glutened!  Here is a biggie....does your hubby brush his teeth prior to kissing you?  Seriously, it can happen, but going out to eat a lot.....that can be just as bad!  We eat at restaurants that have been approved by celiacs (websites).  Just because that offer a gluten free menu does not mean that they understand about cross contamination.  
    • I got glutened last summer.  Heck, I do not even know what glutened me, but I suspect two products that my gluten-free hubby never consumed (he is my canary).  My symptoms were so different from when I was diagnosed (just had anemia then).  My GI thought I had SIBO or something else, but I asked for a celiac panel.  Yep, I had been Glutened!  Took me three months to recover and another three to regain lost weight.  Yeah, I picked up another health issue on the way (hives, rashes, swelling, itching, ab pain, vomiting, and fainting.)   I did not eat out for one year!  Only this summer, I did.  Was it worth the risk?  You bet!  Three weeks in Europe.  Fortunately,  7 days was on a cruise and Celebrity did a great job.  Italy was so celiac-savvy and I did my research and found places recommended by other celiacs in Spain, France and Poland.  If not, we bought cold food at the market and had a picnic.   I am home.  Will I eat out?  Probably not.  I have a busy Fall ahead of me (High School....football, marching band, volunteer positions, house projects, and work).  I can not afford to be sick.   Ah, I will eat out this Thanksgiving break.  My favorite restaurant is 100% gluten free in Tucson, AZ.   Maybe I will discover another gluten-free restaurant closer to home! 
    • 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!  
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