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Requesting Second Tests

sariesue

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sariesue Explorer
sariesue
Posted

Last year I had an upper endoscopy with 1 biopsy because of some digestive issues I'd been having. My says that the vili looked normal and that nothing was wrong with my gut. Then I was tested for food allergies to gluten and those were negative. My allergist said that I most likely have as gluten intolerance and that if I could try going gluten-free. I went gluten-free for a while and all my symptoms went away. Then I went back to eating gluten to see if it was just a coincidence. Since then my symptoms have come back in full force. I want to get retested for celiac since gluten especially since only one biopsy was taken and he never ran the blood tests. The only problem is that my GI dr refuses to even consider that gluten is the cause of my problems.

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sa1937 Community Regular
sa1937
Posted

Last year I had an upper endoscopy with 1 biopsy because of some digestive issues I'd been having. My says that the vili looked normal and that nothing was wrong with my gut. Then I was tested for food allergies to gluten and those were negative. My allergist said that I most likely have as gluten intolerance and that if I could try going gluten-free. I went gluten-free for a while and all my symptoms went away. Then I went back to eating gluten to see if it was just a coincidence. Since then my symptoms have come back in full force. I want to get retested for celiac since gluten especially since only one biopsy was taken and he never ran the blood tests. The only problem is that my GI dr refuses to even consider that gluten is the cause of my problems.

I do think your body has given you a very clear answer.

That said, are you now eating gluten-free? If so, you'll have to do a gluten challenge before even having a shot at a diagnosis. From what I've read here, that means eating the equivalent of 3 to 4 pieces of bread daily for approx. 3 months. Ouch!

sariesue Explorer
sariesue
Posted
  • Author

I do think your body has given you a very clear answer.

That said, are you now eating gluten-free? If so, you'll have to do a gluten challenge before even having a shot at a diagnosis. From what I've read here, that means eating the equivalent of 3 to 4 pieces of bread daily for approx. 3 months. Ouch!

I haven't really been eating gluten-free recently, more of trying to choose foods that are naturally gluten-free. I'm trying to decide whether or not to get retested before I go completely gluten-free.

sa1937 Community Regular
sa1937
Posted

I haven't really been eating gluten-free recently, more of trying to choose foods that are naturally gluten-free. I'm trying to decide whether or not to get retested before I go completely gluten-free.

If you have been eating foods that are naturally gluten-free, you'll probably have to do the challenge.

sariesue Explorer
sariesue
Posted
  • Author

Yes I do realize that I will probably go back to eating tons of wheat, and I'm ok with that. But, can I request a second battery of tests? I would like to go to a different GI dr since I am generally unhappy with the one I have been seeing since I've waited 2 weeks now to get my b-12 levels back.

Skylark Collaborator
Skylark
Posted

Your allergist may be able to order a celiac panel based on your improvement on a mostly gluten-free diet. You need to eat gluten for three months to make it worth getting tested.

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    • trents
      Probably celiac but also confused

      By trents · Posted

      Welcome to the forum, @terrymouse! Your GI doc is correct. Going gluten free now will allow healing to occur in the villous lining of the small bowel such that the endoscopy/biopsy may not show the damage to the villous architecture that is characteristic of celiac disease. Since your celiac blood antibody tests results are on the low side and don't "scream" of celiac disease I think it is important to go forward with the endoscopy/biopsy while still consuming gluten to ensure it will not be a wasted effort. The last thing you want is to have two different test modalities that unnecessarily contradict one another. So, unless the continued consumption of gluten poses an immediate and significant threat to your health, my advice is to (excuse the pun) "gut it out" until the endoscopy/biopsy happens. There is also the option of temporarily going gluten free and then undertaking a "gluten challenge" in the weeks leading up to the appointment in September. Current guidelines for the gluten challenge are the daily consumption of at least 10g of gluten (the amount found in about 4-6 slices of wheat bread) for at least 2 weeks leading up to the day of the procedure. But I would certainly give it longer than two weeks to be sure. And in view of the fact that it could happen sooner if there is a cancellation, I would encourage you to not go gluten free until after the procedure if your health permits. By the way, what are your symptoms? What led you to investigate celiac disease as the cause of your medical issues?
    • RMJ
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      By RMJ · Posted

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    • terrymouse
      Probably celiac but also confused

      By terrymouse · Posted

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    • knitty kitty
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      By knitty kitty · Posted

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    • ehb
      Refractory Celiac disease - what to do

      By ehb · Posted

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