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New Here With A Few Questions :)


mykdsmomy

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mykdsmomy Newbie

Hi there. I'm so glad I found this forum and I have a few questions if you dont mind :)

I have dealt with IBS and some undiagnosed autoimmune issues for some time now. I've had autoimmune stuff since I was little but when I turned 18, I began to have IBS symptoms as well as depression.

I asked the dr. to run a celiac test a few months back and it came back normal but I'm not convinced. Is it possible to have a gluten intolerance but not have it show up in a blood test? I'm really thinking of going gluten free (i've been doing a lot of research). I CRAVE bread products constantly and tend to have a dairy intolerance and an oat intolerance but I dont notice huge problems after eating say a cracker or piece of bread.

Is it worth it to go gluten free for a while and see how I feel? Is it truly possible to have gluten problems regardless of what blood tests say? Thanks so much for any help. I'm just at the end of my rope right now :(

I also had my gallbladder out last year and since then have developed a fatty liver and borderline pre diabetes along with "liver sontes" it's just getting out of control and the dr's dont know what to do anymore :( TIA

Judy


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dlp252 Apprentice

Yes, it is possible to be gluten intolerant and not have it show up in the blood tests. Since you've already had the testing, you may want to give the diet a try for a few months. My doctor did my blood tests and endoscope AFTER I went gluten-free, so we both figured it wouldn't show anything, but he did say that diet is a valid indication. (But without the positive test results, he would not diagnose me with Celiac.) I ended up having my testing done at Enterolabs, who uses stool testing to find antibodies for gluten and a handful of other things.

Guest cassidy

Yes, it is very possible to have celiac or gluten intolerance and have a negative blood test. The blood test is only about 50% accurate. You can certainly try the diet and see how you feel. You probably need to give it a good month of being very strict. If you have a problem with gluten you should feel better by then.

There is great info here and I hope that you find the answers that you need.

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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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