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Blood Test Came Back Normal, Stay gluten-free Until Next Appt?


jencs

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jencs Newbie

Hello everyone,

I went to my aprn last Friday because I had been having stomach issues all week, worst than normal. I almost always have diarrhea/loose stools immediately after eating, the immediate need for a bathroom, etc, in addition to gas, bloating etc. My aprn ordered blood tests, including the Celiac Panel and suggested I either go dairy free or gluten-free for two weeks to see if there is an allergy going on. I started with gluten-free since I have an uncle, first cousin and two of my mother's cousins all have celiac and my mother has always has stomach issues but no official diagnosis. I just go the blood tests back and she says they all look normal. I asked whether that was the antibody or the genetic, or both but she didn't really seem to get the genetic aspect of it. I asked for a copy to be mailed to me so I have them.

She also set an up appointment for me to see a gastroenterologist but that isn't until October 7th. She suggested that if I think the gluten-free is working to stick with it until then, which is fine....I know this is only my sixth day but I haven't had quite of bad of problems and I feel significantly less bloated and gassy. I've also lost 4 lbs, is that normal? I am about 20-25 lbs over weight so I can afford to lose it. I have no problem staying gluten-free but I'm also concerned there may be problems if there needs to be further testing once I get to the specialist...so I'm wondering if anyone has any thoughts? Should I call the other doctor's office now to see what their advice is? I know it can take a while to really make a difference, and if it makes me feel better without a full diagnosis I'm fine with that too, but it's always nice to know what the real cause is.

Thanks for any advice...

Jen


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If you want to have a biopsy and possibly more blood tests with a specialist you do need to keep eating gluten. You can go off it once the testing is done.

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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