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Latent Celiac Disease?


roxnhead

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roxnhead Rookie

Hello Everyone!

New here, although I've been reading post for awhile now. I was pre-diagnosed as a Celiac thru my blood test (all negative) with exception IgA Gliadin Ab IgA 79 High( Normal 11-17). Just received results from biopsy and they were Negative! G.I. said I do Not have Celiac disease. I asked him if this means I am gluten sensitive because being gluten-free for just this week has began to resolve symptoms? He stated that I am either sensitive to gluten or not!(that blood test was a false -positive) That I am not showing damage to intestines therefore I am not a Celiac. He then said that if the gluten-free diet is making me feel better to continue, perhaps I am a Latent Celiac! This guy is all over the place-I believe he really doesn't know! My question is "What test can I have done that can assure me that I am on the right track?" I continue to live gluten-free (trying), but wonder if there is a differential diagnosis that I may be missing! My symptoms are so varied- has anyone had immediate weakness-brain fog after ingestining a Granola bar? (Fiber One)or any other gluten-can symptoms happen this fast? No food allergies. Eye Pain, Neck Pain, extreme fatigue, weakness,hard to hold arms over-head, shortness of breath, insomnia,restless legs,numbness & tingling in feet-toes---- these are just the most prominent symptoms. My most common symptom of course is diarrhea. I have no pain, no stomach issues-except bloating. If any of these symptoms sound familiar, then my dreams have becme true- I am a Celiac! Being sick and on disability for 7 mos now and can't wait to get back to work! Of all the disease's that I could have had- cancer -survivor 5 years, lupus, lyme, ms,-I would be very happy to confirm this diagnosis.


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ShayFL Enthusiast

If they didnt take a lot of samples from your intestines in a variety of places, they could have missed damage. Often it is patchy. PLUS - do ask for a copy of ALL of your labwork and the biopsy interpretation. You will want these for your records and many have found out that the biopsy was POS but their doctor didnt know how to read them correctly. Leave no stone unturned. :)

You can ask for genetic testing to see if you carry either of the primary Celiac genes. This does not dx Celiac, but it could be one more piece to the puzzle for you in deciding if you feel you have Celiac.

If you can afford it, you can also use Enterolab, to see if they detect gluten intolerance from your stool. They also offer genetic testing if your doc. says no.

If the diet is working, why question it? :rolleyes:

nora-n Rookie

Yes, thye will report marsh 1 and 2 and parts of 3 as negative for celiac. I the past, they reported only total villousrophy as positive for celiac, aand flattended villi was considered negative.

I personally think you are in the early stages. That is why they do not detect all the t findings on the samples, and that is why only tha antigliadin test is positive.

There are some abstracts on pubmed about longitutinas studies of retives of diagnosed celiacs. First their antigliadin turned positive, then afte a long time the other tests turned positive.

The other possibility could be you are HLA DQ1, with mainly neuro symptoms, and lots of them, and little or no visible damage to the gut. Antigliadin antibodies are typical in neuro gluten intolerance.

They even found another ttg in those cases, the ttg6 antibody. Google for Hadjivassiliou and you find more.

nora

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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
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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