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Do I Have Coeliac?


Taylahmai

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Taylahmai Newbie

Hi all. I'm new to the boards and am hoping someone can provide me with some advice, because my doctor has been pretty useless!

I have had blood tests and an endoscopy to test for coeliac (in Australia its called coeliac, but in the US celiac.... strange). My Tissue Transglutaminase IG levels were normal but my Gliadin IGA levels were slightly elevated (5.4 g/L and normal is between 0.89 - 4.46 g/L). My endoscopy showed no damage to villi so I was told I didn't have coeliac disease and that was that.

But I've since learned (through doing my own research, no thanx to my doctor) that raised IGA levels means I am gluten intolerant - is that correct? So whats the difference between gluten intolerance and coeliac disease? I went to another doctor today about my rasied IGA levels, and he told me he had no idea why they could be raised if the endoscopy showed no sign of coeliac. He seemed to think my raised IGA levels could be due to something else?

I'm reaalllly confused. Is someone able to shed some light on this?

Thank you :)


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darlindeb25 Collaborator
;) well--you can be celiac and not have full blown damage in your intestines as of yet, or the scope may not have found the damages area, that's always a possibility too----the difference between the 2----a sensitivity means just that--you are sensitive to gluten and in my opinion should go gluten free--i also feel that gluten sensitive and intolerant go hand in hand--i think with a gluten sensitivity you must go gluten free--i dont think there is a middle ground--i feel that all of us would be better off with out gluten in our diets---i dont have a doctor diagnosis and i will never go back to gluten--i have been gluten free for almost 4 yrs now---my sister is a doctor diagnosed celiac and this last nov my dad was put on a gluten-free diet too--i didnt have insurance when me sister went gluten-free and she and i decided together that gluten is my problem too--my life has changed so much since that day--i will never go back-----------have you tried gluten-free to see if you feel better---omitting gluten from your diet will not hurt you, not in the least---give it a try and keep us imformed---------deb
KaitiUSA Enthusiast

You may have celiac. If your IgA levels were elevated that usually has something to do with gluten. It is a pretty specific test. Your body may either not have damage or they could have looked in the wrong spots. I know many people that have had damage but the doctor either didn't go down far enough or get the tissue from a damaged place.

I would really suggest an Enterolab. They test for all sorts of intolerances and allergies. They test for celiac, the celiac gene, malabsorption and so forth. Many doctors don't look at this for diagnosis yet but in my opinion it is a good test. I don't know if you can get one in Australia but I assume you could. The site is Open Original Shared Link to find out more info about it.

That might help you figure out what is going on.

You could always try the diet and see how you feel. Some people on here don't have a medical diagnosis but are 100% gluten free and are self diagnosed. Doctors really haven't been much help I know with me I switched doctors many times looking for an answer. Don't rule celiac out just yet.

Hope you get an answer soon :D

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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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