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A Place where all gluten-free people can meet each other--support groups, adults, teenagers, men, women, people who live inside or outside the USA. Everyone is welcome!


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  1. heatherita
    lcarter
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    Relief

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    Alison R
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    Kay DH
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  16. Guest The Weasel
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    Support Groups Near Pittsburgh? 1 2

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    GAD.. AKA unsure....
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  • Recent Activity

    1. - Nedast replied to Larzipan's topic in Related Issues & Disorders
      18

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - Safetypr replied to Julie Riordan's topic in Traveling with Celiac Disease
      5

      Any ideas for travelling

    3. - trents replied to Hannah2907's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Allergy test results

    4. - Hannah2907 replied to Hannah2907's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Allergy test results

    5. - Scott Adams replied to Hannah2907's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Allergy test results


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  • Posts

    • Nedast
      @Scott Adams She may not have any damage to the joint tissue, or only slight damage. In any case, if it healed or was minimal enough not to cause permanent symptoms, she is lucky. Joints don't tend to heal well, especially with more than very minor damage. When the cartilage is gone, it's gone. My tempromandibular joint won't be recovering from this, that is for sure. I have a similar experience to OP, in wondering what my life would have been like if I had found out the cause of my suffering much sooner. Joint damage isn't the only *potential* oral symptom that I have. The dental enamel on my two front teeth never completely formed, so they have been crowned since I was about 7 years old. Since everything that has ever been wrong with me physically and mentally seems to me to be connected to this one issue, I researched "dental enamel" with "celiac disease," and found out that improperly formed dental enamel on emerging adult teeth is a very telltale sign of celiac disease in childhood. It is such a telltale sign, in fact, that the EU has medical policy in place that attempts to ensure that children with dental enamel defects are referred by their dendist to a doctor, to be screened for celiac disease. This association and the resultant policy has been known and in place in the EU since the 90s. It is now the 2020s, and America still does not have anything like this. Dentists here are completely unaware of oral signs of celiac disease. If our medical organizations had followed the EU, I could have been spared 10-15 years of suffering and the diminshed life quality and expenses that are still to come.
    • Safetypr
      I was diagnosed with celiac 19 years ago and have traveled globally. For Portugal - carry a written, translated statement (in Portuguese) that advises you have celiac disease and cannot eat gluten. Carry French translation for France. No wheat, rye or barley. I would select grilled or baked meat - ask the grill to be cleaned. Steamed veggies- no sauce. No soy sauce. No vinegars unless you know what kind. I carry gluten free bars. Eat fruit and nuts as snacks. Do - choose gluten free restaurants. It’s easier.  Always verify. Some restaurants add pancake batter to omelettes or crackers to hamburgers. Avoid French fries (tossed in flour and high risk of cross contamination in oil).  Do not drink beer - select Bulmers,Stella Artois or Angry Orchid - hard apple cider or wine. Avoid ice cream - often contains flour. I generally avoid desserts.  If you order a gluten free pizza - do not let servers put a regular pizza on top. Do not use the same pizza cutter or server. I avoided most appetizers. Fresh fruit makes a great dessert.  Or, I stop at a grocery and buy gluten free desserts and breakfast bars. Do not trust morning buffets. Hope this helps. Europe is easier than U.S. if you call ahead to verify they accommodate gluten free. If they say no, find a different restaurant. 
    • trents
      Keep in mind, Hannah, that of you are on a gluten free diet and want to get tested for celiac disease, any testing would be invalid until you were back on generous amounts of gluten for weeks/months.
    • Hannah2907
      Hi, the test I did was an online one with list of positive feedback. I initially did the test as I thought I may be lactose intolerant but with the results showing high sensitivity to gluten as well as dairy I thought I’d just ask for foods that may benefit me and my symptoms as well as follow these results up with a blood test with my doctors. It doesn’t specify coeliac, it just showed a very high sensitivity to gluten
    • Scott Adams
      Also, I've not heard of any legitimate allergy tests which use hair samples, certainly there is no test for celiac disease which uses a hair sample. Are you sure your tests are legitimate?
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