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Requesting Second Tests


sariesue

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sariesue Explorer

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

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

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

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

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

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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    • sillyac58
      Thanks so much Scott. I would be incredibly grateful to the gluten gods if eliminating oats was the magic cure. In the meantime, it's nice to have moral support! 
    • trents
      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
    • Dema
      Ooh thanks for all the info I'll check them out, though I may not be functional after 6 slices for 6 weeks 😅
    • Dema
      alright thank your help! 🤍
    • Scott Adams
      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
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