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What Tests Can Be Done If Gluten Free?


gfreejz

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gfreejz Rookie

hello! I have been gluten free for about a year and a half. I say that but I have been gluten bombed 10-? times in that time. Also, I have been on low dairy until recently i gave it up completely. Also no MSG. I have been feeling good for a few weeks straight now and an pumped. It seems hard to feel good for that long at a time. By feel good I mean alert, no gastro problems, calm, grounded. Before I was Gluten free I had GERD, asthma, hypertension, severe allergies, hay fever. So all in all I'm alot healthier. I really don't think I have really healed yet and wonder if I'm cross reacting or something else is going on. I did have bloodwork and upper and lower scope in February which found nothing. I figured if I'm that sensitive why hasn't it shown up. Here is the summary from my doc and my celiac panel which maybe incomplete.

The pathology report from your recent colonoscopy and endoscopy returned. The colon biopsies were normal. The duodenal biopsies showed normal small bowel. The ileum biopsies showed mild inflammation with unclear etiology (not classic for inflammatory bowel disease or crohn's disease).

Labs are normal.

Blood counts, iron studies, thyroid test, electrolytes and kidney tests, pancreatic enzyme and inflammatory markers are all normal.

Blood test for celiac disease is negative, but not reliable since you have been following a gluten free diet.

Final Pathologic Diagnosis

A. Terminal ileum, biopsy Mildly active ileitis with erosion; no

granulomas seen

B. Colon, random, biopsy -- No diagnostic abnormality

C. Duodenum, second and third parts, biopsy -- No diagnostic

abnormality

TTG ANTIBODY, IGA 1

0-6 Negative

7-10 Equivocal

>10 Positive

So my doc said If you feel better stick with the gluten free diet. Come back in six months for pill cam. She saw some little white bumps at end of small intestines and alot of redness and wanted to follow me. But she had no idea what was going on. So should I have a follow up with her or look into maybe finding a second opinion.


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VydorScope Proficient

The only tests I know of...

1) You could order a genetic test which would tell you if you are at risk to get celiac disease or not.

2) Entrolab states their stool test is sensitive enough to work even a year or two gluten-free. I do not know how good/reliable they are, opinions here seem mixed.

That is about all I know of UNLESS you are willing to do a gluten challenge. To do that you would have to eat something like 4 pieces of bread a day for 8 weeks and then get your blood retested. Talk with your doc for details, but that is about what I would expect him or her to say. But in the end, I agree with your doc. If you when gluten-free and got better, stick with it. :)

MitziG Enthusiast

The "mild inflammation" could be damage that isn't quite healed yet. Since you just recently cut out all dairy though, I expect you may find that is what will kick your healing into high gear. I was dairy "lite" for about a year- it wasn't until I removed all traces of casein from everything I eat that I saw that last needed bit of improvement however.

As for testing, the above poster is correct. Without doing a gluten challenge (which would be counterproductive- causing damage so you can asess the damage?) There isnt much. The fact that your antibodies are negative is a good sign though!

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    • trents
      I would say two things and then I'm done. Many celiacs have been misdiagnosed for years with IBS. Testing for celiac disease requires regular and significant consumption of gluten for weeks/months in order to be valid.
    • RMJ
      Can the rest of your household eat the food with gluten instead of getting rid of it? Can you create one shelf, or partial shelf, for your new food in the pantry, in the fridge and in the cabinets as a start? My husband is not gluten free so we each have a cabinet, and separate shelves in the fridge. If we have to share space the gluten free foods go on the upper shelves so crumbs with gluten can’t fall onto them. Good luck!
    • The Logician
      Thanks for the advice, if my sensitivity comes back i’ll do that but I am 74, in good health for my age and probably have been sensitive to gluten for over 30 years the beginning of which I didn’t even know or suspect It was gluten. I’m seen by my doctor every three months with fasting labs, he knows I avoid gluten and has never suggested I should be concerned. It is quite possible a doctor did those tests on me 30 years ago, I just don’t remember, if they did and they were negative that’s why I wouldn’t remember. If you are interested I’ll keep you posted, but from what i’ve read there is no cure for genetic celiac disease and right now I’ve never felt worse than diarrhea eating wheat or better than I do now eating wheat. If there is no cure I doubt my episode with an antibiotic is the cure which means I don’t have celiac. This antibiotic may be a cure for sensitivity however….i hope.
    • trents
      Diarrhea is a classic symptom of celiac disease and may be the only symptom many people experience until damage to the small bowel lining becomes severe enough to spinoff other health issues. There are many with what we call "silent" celiac disease whose symptoms are so minor or occasional like yours that they blow them off. The only way to distinguish between celiac disease and NCGS (Non Celiac Gluten Sensitivity) is to get tested. I strongly recommend that you request your doctor to run these two blood antibody tests: total IGA and tTG-IGA. The antibiotic seems to have put you into some kind of remission at the present time but that may not last.
    • The Logician
      Not that I can remember but my reaction has never been more than diarrhea and I probably ate a lot of wheat products for years not knowing I was sensitive to it. Dr. never tested me because he attributed it to IBS. 
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