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New Here, About To Test, Question Regarding Prior Gluten Avoidance?


syren4444

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syren4444 Rookie

Hi everyone, I'm very happy to have found this forum, I can definitely use your knowledge and advice!

I'm a 24 yr old gal, diagnosed with UC and suffering for about three years with mild symptoms, mostly really bad stomach cramps, gas, bloating, and discomfort. I do not eat much obvious gluten, no wheat, no breads, no convience foods. Now I'm not super strict, so I'm sure I'm ingesting trace gluten in other items. I wasn't intentionally avoiding gluten, I just don't eat bread for health reasons, preferring brown rice, quinoa, etc.

I'm perplexing to doctors, too mild symptoms for my Colitis and no drugs, eating swaps, etc has fixed it. Now after hearing about Celiac and loooots of research, it sounds like it might be the culprit. I match up to a lot of the symptoms (I'm not underweight tho, I've always been normal, I have to work at staying thin). Not one doctor has even mentioned celiac to me.

I'm about to start calling Mon and ask my general, naturopath, and gastro about it.

My biggest question is the 'hot topic' here I see, if I've been not eating much gluten for the last few years, can any test actually tell me if that is what it is?

Has any Celiac's tested positive to any type of test even tho they were avoiding gluten at the time?

I'm going to ask about the blood test, gene test, and biopsy.

Thanks! :)


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Yenni Enthusiast

As far as I know you have to eat gluten to get a proper result. But I am not sure about the amounts that needs to be eaten for it.

ShayFL Enthusiast

Celiac isnt easy to dx. There are many stages to the disease and if you do not have a lot of damage yet, you could test NEG even if you are eating a lot of gluten. For some a proper dx only comes once they are severely damaged.

You could test POS on gluten-lite diet, but it is less likely.

You could up your gluten eating for 2 or 3 months and then test. Or you can just go 100% gluten-free and see if your symptoms go away.

Amyleigh0007 Enthusiast

I strongly believe the reason my Celiac bloodtests came back negative was because I was eating gluten "light". When my son was dx in March I got rid of all gluten in our house. The only time I ate gluten was at lunch at work and that was only whatever amount of gluten was in the Lean Cuisine I had that day. All other meals and snacks were gluten free. I did that until I was tested in early June, so about 2 1/2 months. My doctor never told me to keep eating gluten for the test to be accurate. When I explained the situation to my allergist she agreed with me.

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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