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Strange Symptoms


bstack22

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bstack22 Newbie

I'm going for an endoscopy tomorrow morning to confirm whether or not I'm Celiac. My problems first came about 6 years ago. I had diarrhea for a couple of months and lost 30-40 pounds in that time. The doctor just told me at that point to lay off gluten and then slowly add them back in to see what happened. I went relatively gluten-free for a month or so and then added different levels of gluten intake. First itr was a breaded chicken cutlet, and eventually I made my way back to sandwiches, pizza, the whole shebang.

The weight all came back (about 180 lbs). No health problems for 6 years, not even diarrhea. About 6 months ago I had another flareup for a few weeks and I dropped about 10 lbs. I've stayed stable since June or so. But my blood tests from 2 weeks ago came back positive, when i had another small flareup.

Is it normal to have symptoms like this? To be totally fine for years, even with a full gluten intake (I had sandwiches virtually every work day since 1998)? Sorry for the long post, I'm just trying to be more aware. Thanks.


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tom Contributor

Hehe the LONG posts are PAGES long.

I'm no expert, just a long-suffering celiac who's read a lot online, but i've never seen a situation where after the diarrhea begins, the person is able to do what u did.

To me, the endoscopy test seems pretty subjective. Diff docs can interpret results differently. I've read how much a difference there can be in biopsies taken from diff spots. It's definitely NOT a pass/fail test to confirm whether you are celiac. It DOES definitely confirm whether the doc found damaged villi.

I put more faith in the genetic HLA-typing to see whether the celiac genes (DQ2, DQ6) are there or not.

stef-the-kicking-cuty Enthusiast

Hi tom,

i heard something completely different. With some people it can take more than 10 years until all the symptoms come back, so 6 years isn't a long time. It depends on the person. Once you go glutenfree and your intestines healed completely and you would reintroduce gluten, it could take a few days for the first symptoms, weeks or even years. I already heard about people who were symptom free for more than 10 years and then the whole trouble started again. So it actually is possible.

Stef

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    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • 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. 
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