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So Confused

Jezzilin

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Jezzilin Newbie
Jezzilin
Posted

Hi everyone!

 

I have been struggling for over a year with stomach pains, gas, bloating, and the runs. We have narrowed it down to possible celiacs, or crohn's. Both run in the family. My grandmother had crohn's and my aunt has celiacs. 

 

This past few weeks I have been trying to be gluten free to see if it helps but have had a few gluten incidents which resulted in feeling awful for a few days. So I am pretty sure it is celiacs. If I just stay away from gluten I start to feel pretty much fine after about 4 days. 

 

I am rather confused though by my GI doctor. From what I have read there is a panel of lab tests that should be done. He did one test, tTG,IgA, which came back <2 (0-3 range is negative). Also, I saw it noted somewhere here that the tests should be done after several weeks of gluten free. This was done maybe after 24 hours of no gluten. On top of that he has me scheduled for a colonoscopy and egd on Monday. If he does take a sample will it even show anything with me not being totally gluten free? Am I going to have to do this egd again later? I'm not sure my insurance is going to pay for the first one. 

 

What should I do? 

 

 

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kareng Grand Master
kareng
Posted

You should NOT be gluten free before any testing! You must be eating gluten to make antibodies and damage. For a Celiac, going gluten free is what heals the damage and reduces/ eliminates the antibodies.

Jezzilin Newbie
Jezzilin
Posted
  • Author

Okay. That makes sense. I couldn't figure out why you would want to be gluten free for the testing anyway. So they will be able to get what they need from the egd on Monday. Will there be enough damage if I remain gluten free until Monday? The doctor said it was fine to try gluten free. I had a small amount of flour Wednesday night and had terrible cramps all day yesterday. I don't know how much more of that I can handle. I had three children with no drugs, no epidural and this is worse. Should I request the other lab tests?

cyclinglady Grand Master
cyclinglady
Posted

Here is the complete list of celiac blood tests:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

I would ask the GI to have the full panel drawn especially since celiac disease runs in your family. My TTG test was negative. If my celiac disease savvy GI doc had not ordered the complete panel, my diagnosis might have been missed. As it was I had moderate to severe intestinal damage. Make sure lots of biopsies are taken. My visual on the scope looked normal. It was the biopsies that noted the celiac disease.

Please research more and share with your doctor.

(Source of tests: NVSMOM -- )

Welcome to the forum and let us know how it goes!

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    • Trish G
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      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
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      By kpf · Posted

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

      By trents · Posted

      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
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