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Feeling Awful!


justwantrelief

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justwantrelief Newbie

Hi...I have been gluten free for over a week and I seem to just be getting worse! I had to take a xanax today just so the pounding heart would stop and I could take care if my kids. Any idea if this is normal? I am not diagnosed...just tring to be healthier and feel better. It does not seem right that lack of gluten in making me feel this bad! It has been a week and I feel too crappy to do anything! Any advice would help! Thanks


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T.H. Community Regular

I'd take a look at 'gluten withdrawal,' a number of people suffered from that who are active on the forum. Felt bad, I understand, but it did pass.

Another thing I'd look at is if there's anything you've suddenly increased in your diet that you didn't eat as much of before. You might have an undiagnosed food allergy or sensitivity. My GI was telling me that a number of celiacs are more prone to this, but the symptoms can be masked by celiac disease and suddenly come to the fore after going gluten free. That was what happened in my case. Felt awful within a couple days, so let me just send you a big honkin' sympathy hug there! Doesn't seem right that we cut out the gluten, which is a big deal, and it seems to make things worse!

But, as someone who's done this now for a year, it really does get better. It can be a bit of a windy road to get better, but when you get here? SO worth it.

Hi...I have been gluten free for over a week and I seem to just be getting worse! I had to take a xanax today just so the pounding heart would stop and I could take care if my kids. Any idea if this is normal? I am not diagnosed...just tring to be healthier and feel better. It does not seem right that lack of gluten in making me feel this bad! It has been a week and I feel too crappy to do anything! Any advice would help! Thanks

India Contributor

I'd agree with all of this and add that soy seems to really increase my anxiety problems. It turns up in a lot of gluten-free foods, unfortuntely.

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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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