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Mish-Mash

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Mish-Mash Newbie

Hi, I'm 19, and for about 6 years, I have been sick with a strep virus, knee op, umbelical hernia op, and for the past 3 years I have had terrible stomach pains, skin rash's, joint pain, memory loss and have done test for celiac disease about 2 years ago, but I was already on a gluten free diet, as the doctor told me that it would not change the results. soon after, I accidentally had a bit of gluten and got really sick. then about 6 months later, I went on a candida diet as my body was reacting to the smell and touch of gluten. Things got better after that, until I kept getting UTI's, but the doctors couldn't find any bacteria. Soon after, I was sent to a gastroenterologist and was diagnosed with mono, and suspected chrons, and she also wanted to redo the celiac testing, but after only 4 days, she told me to stop and did some more intestinal biopsies because I was reacting so strongly, and has put me on corticosteroids. And this year I've had renal colic six times, but they still can't find and kidney stones, but everytime they do a urine test, they find oxolate crystals. My specialst and GP are baffled because they think I have the symptoms for both celiac disease and kidney stones, but can't find any medical proof. Any help would be hugely appreciated, thanks.


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RollingAlong Explorer

Well, you've given the docs a good try. They've looked and they can't find any medical proof that gluten is an issue. So, if you went gluten free and that didn't help, they could try again and it wouldn't be anything but a temporary inconvenience for you.

If you go gluten free and it does help; that would be ok, but you won't have any medical proof. Only you can decide how important that is to you, relative to your current uncomfortable symptoms. None of the celiac tests are perfect; false negatives are not uncommon. If you go gluten free without medical proof, you will be joining a rather large group of people. My spouse had all the tests (multiple rounds of bloodwork) and the biopsy - it was all negative - and yet he feels so much better on the diet.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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