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Stuck At Weak Positive Ttg-iga


006

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006 Apprentice

I was diagnosed about 9 months ago. I went hard-core with gluten-free to the point where I don't eat at restaurants. In fact, I bring in tupperware! I prepare all my meals. I read the lables and write companies to verify gluten-free.. and just saying gluten-free isn't good enough. I have them tell me how they avoid cross contamination. I get a tTG-IGA about every 3 to 4 months. I got two tests over the past 30 days. Somehow, I am stuck at a weak positive result. I am either a 4 or 5 and the weak positive scale is 4 to 10. So, I tend to be on the low side of a weak positive, but clearly, I am not negative. So...

How much trouble am I in if I never pin-point the culprit food(s)? I am so fearful of the elevated cancer risk because I belive I have been triggered for aobut 15 years before finding out. I don't get any symptoms and since going gluten-free, I feel no different. If I keep getting the same blood test result, is my cancer risk level higher than a negative result of 2 or 3? Is the difference neglibible? Should I be worried?

Also, I can't find anythning that shows me concrete facts as to how much more of a cancer risk one would be if following a strictly gluten-free diet compared to one who is not Celiac. Because I have been triggered for so long without knowing, I am so afraid about being the case that develops cancer even a few years after going gluten-free. So obviously, I am obsesed over these tTG-IGA results.

I would really appreciate some facts. I'd like to get this stuff out of the forefront of my daily thoughts.

Thanks.


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RiceGuy Collaborator

I don't know about the antibody levels and such, but I'm confident someone will be able to shed some light on it.

As for CC, that can be tricky. Perhaps if you post the foods you usually eat, someone will know how they are regarding CC.

My only other thought, is that perhaps you're sensitive to some other food, like dairy, soy, etc. If you rule out CC, then I'd consider the top allergens next, I think.

006 Apprentice

The "antibody levels" is exactly the issue for which I am seeking feedback.

Tallforagirl Rookie
The "antibody levels" is exactly the issue for which I am seeking feedback.

tTG levels may never get to zero, so I wouldn't be worrying that you're doing something wrong. The anti-gliadin IGA test is a better one for monitoring dietary compliance, since those levels increase quickly and decrease quickly with ingestion of gluten/compliance with gluten-free diet.

The cancer risk is elevated in untreated celiac, to about 3 times that of an average person, but you have to remember it's a very small risk in the first place.

If you need reassurance, perhaps you could ask for a repeat of the biopsy to see how well you are healing.

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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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