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agape30 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsIs It Celiac? Also, Need Advice Re: Going gluten-freeOkay, I'm confused. I've had a number of GI problems on and off for most of my life (and I'm 30). When my sister was diagnosed with Celiac a few months ago, although I had different symptoms from her, decided I wanted to get tested and the GI doctor I chose agreed.
Results: My blood work came back normal
I then had both a colonoscopy and endoscopy. The sprue were not flattened and the pathology report came back that I did not have Celiac Disease and I was instructed on what to do for GERD and IBS (I was diagnosed with the former from the endoscopy--although I have no GERD symptopms!) THEN...just as I'm about to leave the PA's office, she notices that there's a four-page attachment of explanations. After I convinced her I certainly ate gluten prior to the testing (and a lot of it--was afraid I would never have my fav foods again), she interpreted the findings that I was "at-risk"/predisposition to Celiac. She was confused with the report and said she had seen nothing written up that way. The one thing she said that was noteworthy re: pathology report was some lymphocytes in my colon...I've never heard of that being related to Celiac, but she called me later that day after talking with the GI doctor and he thinks I might have early Celiac. They then told me to forget the drug they wanted me to take for GERD (and not worry about refraining from caffeine, citrus fruits, tomatoes, etc.) and to try going gluten-free for at least one month to see if that helps. I asked if she wanted me to call after one month and she said I "can."
I certainly feel more confused than ever and feel I'm left hanging. She also did not direct me to a nutritionist. Would that be wise?
It's only my second day going gluten-free and my stomach is continuing to hurt like it normally does, but then she told me not to expect anything until at least two weeks.
I've signed a consent form for the test results to be faxed to my sister's GI doctor to see what he makes of all of this. I don't have the characteristic diarrhea and weight loss (the opposite for both), but stomach pain, lots of tingling in the extremities, sleepiness/fatigue, and even some loss of coordination.
Also, any basics I need to know about going gluten-free? I'm especially interested in the following:
1) list of any medications (prescription and OTC and vitamins) that contain gluten or how to find this out
2) a decent bread. I live in a city, and there are some health food stores, but the bread I found was really hard and tasted stale. Is there nothing better?
3) What about mouthwashes and toothpaste? chapstick or lipstick? Anything I need to be concerned?
4) What about frozen veggies or frozen chicken if there is no sauce? I understand about cross-contamination issues as well as that sometimes the conveyor belts are dusted with gluten for cleaning purposes. My sister has contacted a number of companies, but unfortunately, they either never got back to her or simply said, "look at the ingredients." Anyone reacted to plain frozen veggies (or fruit) or the like?
I know this was a long post, but I'm at a loss of what to think b/c I was told two weeks ago my results were negative for Celiac! (and hence I went out and bought food containing gluten), so it's frustrating having been informed two days ago that I MIGHT have Celiac Disorder, and their reasons for thinking so don't make sense to me.
Any help would be greatly appreciated.
Have a blessed day!
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