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Celiac Disease Pre-Diagnosis, Testing & Symptoms

If you haven't yet been diagnosed this is the place you can discuss your symptoms and any test results that may indicate that you might have the disease.


19,278 topics in this forum

  1. cindyb1
    CeliacDaniel
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  2. Guest anonymous4698873
    Guest

    Seeing campus NP in a few days....

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  3. Countjulian
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  5. Ninja
    CeliacDaniel
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  6. Athaullah
    cyclinglady
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  7. MomoNoHanna
    cyclinglady
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  8. MomoNoHanna
    cyclinglady
    • 1 reply
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  9. GIunknown
    Dreamko
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  10. radik
    cyclinglady
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  12. PAMAYA76
    cyclinglady
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  13. Jenjenn
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  14. french
    ravenwoodglass
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  15. Ned
    Jmg
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  16. narchar
    Gemini
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  17. DownWithGluten
    SandiMIRN
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  18. Karib574
    tessa25
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  19. Morgensmom
    rehh05
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  20. pdm1981
    ravenwoodglass
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  21. CeliacinKY
    muchbetterthanmost
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  22. Alifaour
    cyclinglady
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  23. HeatherDawn82
    cyclinglady
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  24. Interval
    Kel1005
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  25. gabby77
    ravenwoodglass
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  26. Jilly1
    Ennis-TX
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  27. Dgarza
    cyclinglady
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  • Recent Activity

    1. - kpf posted a topic in Introduce Yourself / Share Stuff
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      Vegetarians and vegans with celiac disease

    2. - trents replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
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      Fiber Supplement

    3. - Trish G posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    4. - kpf replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      ttg iga high (646 mg/dl) other results are normal


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  • Posts

    • kpf
      I am wondering if there are any vegetarians or vegans on this forum. I’ve been vegan for 15+ years and am just finding out I likely have celiac disease (blood panel done, need biopsy). My favorite foods—outside of vegetables, fruits, nuts, seeds—I will likely have to give up. Anyone else? 
    • trents
      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
    • Trish G
      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
    • kpf
      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease:  fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches neutropenia I never dreamed in a million years she would consider celiac disease. It was a shock to me. It’s definitely not what I went to her for. 
    • knitty kitty
      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency.  Your symptoms seem really familiar.  Malabsorption is a real thing that happens with Celiac.  A multivitamin is not going to prevent nor correct nutritional deficiencies.    Doctors do not recognize nutritional deficiency symptoms.  Gastrointestinal Beriberi is not recognized often.  Caused by thiamine deficiency, high dose thiamine supplements or IV administration with other vitamins, minerals and glucose under doctor's care is needed.   Thiamine deficiency is found in anemia.  Thiamine deficiency in the kidneys can result in electrolyte imbalances and cloudy urine.  Thiamine deficiency can cause high blood sugar which can cause cloudy urine.  Dehydration can cause cloudy urine.   I'm linking some PubMed articles.  You see if your symptoms match.  Discuss the possibility of Gastrointestinal Beriberi with one of your specialists soon!  Just to rule it out.  I'm very concerned.   I'm linking some PubMed articles.  You see if your symptoms match.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/#ref3 From Section 3: "In conclusion, TD limited to the gastrointestinal system may be an overlooked and underdiagnosed cause of the increasingly common gastrointestinal disorders encountered in modern medical settings. Left unattended, it may progress to wet or dry beriberi, most often observed as Wernicke encephalopathy.". . And... Refeeding Syndrome https://www.ncbi.nlm.nih.gov/books/NBK564513/
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