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Hello,

This is my first post to the gluten-free forum and one of my first visits. I found the site after reading Elisabeth Hasselbeck's book.

For more than five years now I have been having trouble with my stomach. I've seen numerous doctors and specialists, naturopaths, etc. regarding my condition and have been unable to receive a diagnosis. In addition, I was recently diagnosed with Hashimoto's Thyroiditis.

The stomach pain has come and gone, although in the last few years it has been with me almost constantly. Three years ago I had a blood test for Celiac, which came back "suspiciously positive" (although I heard blood tests often provide a false positive) so a biopsy was done and the results were that I did not have Celiac. During the endoscopy they noted I had atrophic mucosa but after testing my vitamin levels (on the low end of the normal range) the doctor said I was fine. They also performed a colonoscopy at this time and noted nothing significant. I've had gastroparesis testing, glucose intolerance testing, a variety of blood tests, allergy testing, etc. with nothing signifant to reveal the problem.

Almost three months ago I started a special diet-based upon my own research and eliminated sugar and products with white flour. While I did not specifically eliminate wheat/gluten, I have very little wheat/gluten products (I occassionally eat couscous and maybe a few products that include gluten). During this time I've felt great. I've "cheated" once or twice and still feel okay, except when I drink beer or wine coolers (malt) - I haven't tried any gluten free alcohol yet.

To make a long story short, after reading Elisabeth's book (which sounded exactly like me!) I started to wonder if I was misdiagnosed. Or, could I have non-Celiac gluten intolerance???

I'd really like to find out if there are foods I'm sensitive or allergic to. I started to read about elimination diets as a way to test for food sensitivities, etc. This sounds like something I'd like to do, but there are so many different elimination diets, I don't know which to choose. Has anyone done something like this? If so, your experience would be extremely valuable to me. I don't want to just look for gluten sensitivies, I want to go through everything-dairy, eggs, fruit, etc. Any advice would be greatly appreciated.

Thanks so much for reading this long post and any advice you can provide!

Kelli

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Hi, the elimination diet my Dr. had me use was like this....

Make yourself a very basic list of foods you think are safe for you. Eat from only that list for a week. If you're not feeling well you will have to rotate the foods on that list in and out of your diet until you have removed the offending food. After you are sure you have your safe list, begin bringing in other foods one at a time. You should only try one new food a week. Being impatient will only confuse things as it can take several days to recognise a mild reaction. If you react to a plant food research the entire plant family.

You also have to keep in mind that sometimes you will be reacting to a process not the food. Like I don't tolerate smoked foods or vinegar because of my mold allergy. I react to celery seed with itchy eyelids. I do not react to celery stalks. I react to carrots and parships with blisters on the back of my head. I reacted to sweet potatoes on my last allergy test. Sweet potatoes and carrots are not in the same plant family but are both treated to keep them from sprouting roots while sitting in the store. So I may be able to eat home grown organtic carrots and sweet potatoes. I just haven't gotten to testing that one out yet.

You are suppose to write all this down but I never have. I've been winging it for years. If you write it down maybe you won't still be doing this years from now.

Hope this helps

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Thanks for the advice. That sounds reasonable and logical (and much simpler than some of the diets I was reading about that required you to be on a special diet for 2-6 weeks before doing the food testing).

Hopefully it will help me figure this out!

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Keeping a food journal with symptom entries will help you in the long run. It also sometimes can bring something to light that has been staring you in the face for awhile but you haven't noticed for whatever reason.

By the way, I have never heard an account of anyone with a false positive. I think it's an Urban Celiac Myth!

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My Gliadin Ab, IgG test was 53 (range 0-24), which is why they told me I may have Celiac. The doctor said the only way to be definitive was to order a biopsy. I also did my own research and read that blood tests frequently show a "false positive" and that the only way to determine for sure is to have the biopsy done. I had the biopsy-that came back negative for Celiac....any thoughts on what I should trust? I've never really felt bothered by bread, pasta, etc. My symptoms were always worse after eating something fried. However, I had the pain all the time the last couple of years, so maybe the everyday stuff was bothering me and now that I've gotten rid of almost all the gluten in my diet it's the reason I'm starting to feel better...Sometimes I wish I could just take a test and know the answer...but then again maybe I don't really want to know because it would mean having to truly give stuff up that I eat on occassion right now.

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I can only reiterate what another poster said, celiac blood tests rarely, if ever, give a false positive. The blood tests are notoriously inconclusive, and if anything, would give you a false negative. A biopsy is still considered the gold standard of diagnosis, but even that can be a false negative, based on a number of different factors; for example, patchy damage, not enough biopsies taken, reports read incorrectly, etc. Your blood work indicates that something was definitely going on, even the low end of normal vitamin levels.

To be tested again, you would need to be on a full gluten diet for a couple of months... to hope that the tests would pick it up. If you aren't worried about it at this point, then try going strictly gluten-free for a couple of weeks and see if you feel better. You'll probably be surprised at how much better you feel cutting it completely out of your diet.

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