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kellerg2

By kellerg2
in Coping with Celiac Disease

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kellerg2 Newbie
kellerg2
Posted

I have been having stomach problems for about 3 months now. It came on suddenly and seems to get worse at times throughout the days and fine at nights. I was originally placed on Omeprozel and that seemed to help the symptoms some but they never went away. I then was referred to a GI and he performed an Endoscopy that came back inconclusive but showed "what might be the start of Celiac Sprue". Blood work was all normal. I started going gluten free about a week ago and can tell a difference without question but still have some cramps in my stomach throughout times during the day. Dr wanted me to go get a CT scan and I convinced him that i would like to continue to go gluten free for a month till our next appt and see if that works. Has anyone ever had "inconclusive" biopsy and negative blood? This has been so frustrating to me because people think its all in my head and the dr doesn't seem to have any idea whats going on. Any advice or information would be greatly appreciated. Thanks.

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Kimbalou Enthusiast
Kimbalou
Posted

Just go ahead and stay gluten free. Sounds like you should, considering the biopsy results. It can take a long time to feel better. I was diagnosed in Nov and I still have stomach problems. I am very sensitive to everything I eat...spices, veggies, etc.

You are doing the best thing for your body. Welcome to this board. i'm sure you will find a lot of help here. And it's a great place to vent.

kellerg2 Newbie
kellerg2
Posted
  • Author

Just go ahead and stay gluten free. Sounds like you should, considering the biopsy results. It can take a long time to feel better. I was diagnosed in Nov and I still have stomach problems. I am very sensitive to everything I eat...spices, veggies, etc.

You are doing the best thing for your body. Welcome to this board. i'm sure you will find a lot of help here. And it's a great place to vent.

Thanks. I already feel better just knowing there's a place I can get some advice from some others going through the same thing I am. If I hear that it's probably all in my head one more time I am gonna go nuts

Asianmom Newbie
Asianmom
Posted

I hope you feel better soon!!!

I had several negative blood tests due to various reasons...and MANY inconclusive biopsies until finally I had all positive blood work and positive biopsies in the end! Mine was due to docs that didn't know what they were looking for and didn't take the biopsy in the right part of my intestine.

For me it was the timing of the tests. Seemed like they always tested me in the summer, when I ate all fresh veggies and fruit etc, and just naturally eliminated gluten from my diet...and low and behold tests came back negative. Seemed like they never tested when I was in college eating all that pizza, ramen noodles, and taco bell!

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      I don't see how cornstarch could alter the test results. Where did you read that?
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      By Julie 911 · Posted

      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
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      By trents · Posted

      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
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