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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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    • kpf
      ttg iga high (646 mg/dl) other results are normal

      By kpf · Posted

      I think you may be correct. The way the results are printed makes it appear as though it’s the ttg iga but I think you’re right—the 646 is total iga. So this would be indicative of another issue (another autoimmune condition, infection, cancer, etc.) and my doctor would need to do further testing. Thank you for saying this! 
    • RMJ
      ttg iga high (646 mg/dl) other results are normal

      By RMJ · Posted

      Are you sure that is the TTG IgA? Based on the units (mg/dL) and having an upper limit to the normal range, it looks like a total IgA result. 
    • kpf
      Vegetarians and vegans with celiac disease

      By kpf · Posted

      I am wondering if there are any vegetarians or vegans on this forum. I’ve been vegan for 15+ years and am just finding out I likely have celiac disease (blood panel done, need biopsy). My favorite foods—outside of vegetables, fruits, nuts, seeds—I will likely have to give up. Anyone else? 
    • trents
      Fiber Supplement

      By trents · Posted

      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
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