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jasoncolz

Is Endoscopy The Only Way?

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hello

after going 2 months gluten free i am still having problems.i have not been diagnosed with celiac disease but after going gluten free i lost my splitting headaches and bad depression so i continued to stay off it.i still seem to be having problems with a range of other foods though, i get bad reflux and brainfog.

physically i feel real good most of the time but my mind won't function i walk around in a daze.here are my various test results from 2 months ago.

COELIAC TESTING

Gliadin Antibodies IgG

*55 units ( <42 )

Gliadin Antibodies IgA

6 units ( <34 )

Tissue Transglutaminase IgA Abs

2 U/ml ( >20 Positive )

( <15 Negative )

1.COELIAC SCREEN

-normal

2.BLOOD COUNT

-normal

3.ESR =1

-normal

4.KIDNEY FUNCTION

-normal

5.LIVER FUNCTION

-normal

6.THYROID

-normal

i have had an endoscopy and nothing bad was found (no bacteria etc).Is an endoscopy the only way to tell wether my villi, intestinal tract is damaged and if gluten is really the problem.

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Sometimes some of us never get a true answer, the only answer we find is just going gluten free. If gluten free makes you feel better, then do it. If there are still issues with other foods, then try an elimination diet. I'm sure someone will come along and explain an elimination diet to you or post you a link. Many celiacs have been misdiagnosed by the endoscopy, only because the doctor missed the worst spots. Many celiacs have been given false negatives. Plus, many of us may not be celiac, but still gluten intolerant. I know that soy and corn are problems for me, plus, many celiacs can not tolerate soy. Also, sometimes in the beginning it is best to stick to plain foods, simple things like meat and veggies. You may not be totally gluten free either, maybe a vitamin, soap, shampoo, lotion?


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Guest nini

dietary response is the best indicator if you have a problem with gluten, and you are either not yet 100% gluten-free, getting continued gluten from cross contamination, personal care products, vitamins, other medications etc... if you haven't replaced old toasters, wooden spoons, cutting boards, collanders, scratched non stick cookware, cast iron pots, then you are still getting gluten. Initially many of us are also lactose intolerant, but even others still have multiple intolerances to other foods like lectins. You will have to be your own best detective to figure out if it is all in your head or all in your diet. (I'm inclined to believe it is in your diet) Also, 2 months is not enough time to feel totally well, it took me a good 6 months before I noticed major improvement, and 2 years before I really felt "human". (I don't think I ever felt human before)...

the biopsies can miss damage if you are in the early stages or if you are non celiac gluten intolerant, keep on trying with the diet, keep a detailed food journal to see if you can track symptoms and correlate them to certain foods you eat.

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Endoscopies don't ALWAYS provide definitive answers. Villi damage may be patchy, and if your doctor only looked at/biopsied NON-damaged patches, he might have missed present damage.

Why don't you post a list of what you are eating? It took most of us a few months to figure out that foods that we thought were gluten-free actually did have gluten. :( For example, Rice Krispies, Corn Flakes, "light" ice cream," many brands of potato and corn chips, deli-made tuna salad, many deli meats, Rice Dream Rice Milk, most brands of soy sauce, and many salad dressings. There are a lot of knowledgable, experienced people here who can help you figure out what's going on.

Hang in there!

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