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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.


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    • growlinhard1
      Thank you for the response. I didn't think of  the things you presented but they make a ton of good sense. I'm in the USA so no stipend for a formal dx. With the added cost of gluten free food, I wish there was some program to help. I bought a loaf of gluten free bread that cost $7.99 and my usual multi grain is $2.57!  I REALLY felt the doctors taking you more seriously comment. That is a huge issue. I just had fairly extensive blood work done, none of which was testing for celiac, and everything came back normal. I felt completely dismissed by my doctor even though my symptoms remained unchanged. As a matter of fact, Celiac disease wasn't even on my regular doctors radar. I think after studying the symptoms and comparing them with my symptoms that should have been one of his top differential diagnoses. I will follow your advice and wait until after the bx to begin eating gluten free. I'm fairly certain of the diagnosis at this point because 4 days of no gluten has made a difference. I feel somewhat stronger, nowhere near as anxious or irritable, urinating every 2 hours instead of every 30 minutes to an hour and much less nausea.  If anybody has any other words of wisdom, advice, really anything, please let me know..I'm kind of alone in this.
    • knitty kitty
      Yes, some people with Celiac do react to quinoa.  I know i do.  Apparently, two different "breeds" of quinoa can stimulate the immune system. Read here... Variable activation of immune response by quinoa (Chenopodium quinoa Willd.) prolamins in celiac disease https://pubmed.ncbi.nlm.nih.gov/22760575/#:~:text=Cultivars Ayacuchana and Pasankalla stimulated,for patients with celiac disease. And some of us react to corn (maize) as well. Maize prolamins could induce a gluten-like cellular immune response in some celiac disease patients https://pubmed.ncbi.nlm.nih.gov/24152750/   P.S. @Brook G have you thought about getting a genetic test done for known Celiac genes?  
    • Brook G
      People who are Celiac don't have a gluten response to Quinoa, but some people who are gluten intolerant do.  I react to quinoa just like I do to gluten.  Freddies/Kroger came out with their own gluten-free Bread and I didn't think to read the ingredients.  I couldn't figure out where I would have gotten gluten in my diet until I read the ingredients in their bread... QUINOA
    • trents
      Thanks for the additional information. I was thinking of asking you if your daughter was taking methylated vitamins since she has the MTHFR gene but you beat me to it. To answer the question you posed in your original post, as I explained, celiac disease does not damage the colon but the lining of the small bowel. If the damage is pronounced enough and the doc doing it is experienced, yes, the damage done to the lining of the small bowel can be spotted with the naked eye.
    • cameo674
      I could not locate the correct Gary Brecka video where he explains the methylation process and specifically states things about how people with the MTRR homozygous gene mutation are known to suffer from heartburn due to a weakened valve/sphincter where the esophagus and the stomach connect.  My brother had the youtube video sent to him from 10x health which is probably why I cannot locate it.     I will have read up on mast cell activation.  I do not know anything about it.  Tums is my preferred gerd treatment.  I always figured a little extra calcium could not hurt me.  
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