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Results Of Going Off Gluten

marys2012

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marys2012 Rookie
marys2012
Posted

If you have celiacs or are gluten intolerant how does it feel? Let me specifically add my symptoms that I have. I do not have chronic diarrhea but do get constipation a lot and have issues with nausea after eating. I also get gas and bloating with fatigue. I have been diagnosed with ibs-d and fibromyalgia. If I were to go gluten free how would I know if it was working? Obviously, I would feel better. But should I expect a complete turn around and to feel great? Would my fibromyalgia be expected to go away? I am contemplating going on to get an endoscopy, but right now have some other medical bills coming in plus I am about to get a laparoscopy for something else I have going on. So I have medical bills coming in and am not sure I want to pursue an endoscopy at this time. But I can go gluten free to see if I feel better. (well, I have been gluten free for about 8 days now I think.) I still feel achy, but my constipation has improved a bit and nausea has gotten a lot better. Fatigue is still there but that could be due to some other pain issues I'm having. Plus I guess I could still have fibromyalgia plus celiacs or gluten intolerance. But my main question is what should I be feeling and how long should it take before I start to see major improvement? I am not one to expect a miracle. I don't expect I'll ever feel like I did before my health problems started, but I also want to understand what to expect. And need to decide if I should get further testing in the future. When I got the celiacs blood work done my Deamidated Gliadin Abs, IgA was high. It was 76 and over 30 was considered high. My doctor said it was a false positive.

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beachbirdie Contributor
beachbirdie
Posted

If you have celiacs or are gluten intolerant how does it feel? Let me specifically add my symptoms that I have. I do not have chronic diarrhea but do get constipation a lot and have issues with nausea after eating. I also get gas and bloating with fatigue. I have been diagnosed with ibs-d and fibromyalgia. If I were to go gluten free how would I know if it was working? Obviously, I would feel better. But should I expect a complete turn around and to feel great? Would my fibromyalgia be expected to go away? I am contemplating going on to get an endoscopy, but right now have some other medical bills coming in plus I am about to get a laparoscopy for something else I have going on. So I have medical bills coming in and am not sure I want to pursue an endoscopy at this time. But I can go gluten free to see if I feel better. (well, I have been gluten free for about 8 days now I think.) I still feel achy, but my constipation has improved a bit and nausea has gotten a lot better. Fatigue is still there but that could be due to some other pain issues I'm having. Plus I guess I could still have fibromyalgia plus celiacs or gluten intolerance. But my main question is what should I be feeling and how long should it take before I start to see major improvement? I am not one to expect a miracle. I don't expect I'll ever feel like I did before my health problems started, but I also want to understand what to expect. And need to decide if I should get further testing in the future. When I got the celiacs blood work done my Deamidated Gliadin Abs, IgA was high. It was 76 and over 30 was considered high. My doctor said it was a false positive.

Your doc is an idiot. The deamidated gliadin test is very specific, highly accurate. False positives would be very rare. Why on earth would your doctor say your test is a false positive? What other tests did your doc do? A ttg would have been useful as well as anti-EMA.

Your test suggests the need to be gluten free, and I would imagine you would feel a lot better. The time table for improvement is quite variable from one person to the next, some people feel better in days, others take months. No one can predict for sure what your course would be.

If you are wanting to get an endoscopy some time in the future, you would need to be consuming a fair amount of gluten for a fair amount of time before having that test.

Hopefully one of the forum members with greater understanding will be along soon to help you a little better.

Wishing you the best!

birdie22 Enthusiast
birdie22
Posted

Many of your symptoms are similar to mine (bloating, nausea, fatigue). With a positive dgp test I'd say so long to gluten for good. If you did want to do the endoscopy you'd need to remain on a gluten rich diet for accurate results.

It will take a while being gluten-free to see positive improvements to all symptoms. While some say they feel great within a week many others say it took months to a year to see real consistent progress.

Type1CDE Newbie
Type1CDE
Posted

I second the idiot doc comment (: mine was clear that it is very specific to celiac and that it wouldn't be caused by anything else...

Skylark Collaborator
Skylark
Posted

When I got the celiacs blood work done my Deamidated Gliadin Abs, IgA was high. It was 76 and over 30 was considered high. My doctor said it was a false positive.

On what basis did he decide it was false positive? Is this the same idiot who diagnosed you with IBS-d? Around here we say IBS stands for "I Be Stumped". It's often caused by celiac. DGP-IgA is about 85% specific, meaning there is a better chance than not that you are celiac.

As far as improvement, there will be a lot of slow changes. It takes time for your digestive system to heal, then more time for you to absorb and incorporate all the vitamins and minerals you're missing. Your thyroid function may improve, which will likely help the fibromyalgia. This all takes place over a timeframe of months to years, not days or weeks.

marys2012 Rookie
marys2012
Posted
  • Author

Lol-lol-lol!!!! I love it! I do take this seriously and am very concerned about being told I have had a false positive. But I do agree that my doctor may be an idiot! I think I am going to go back to my pcp and ask her to send me to another gastro doctor for a second opinion. And yes Skylark, this is the same doctor that said I had ibs.

marys2012 Rookie
marys2012
Posted
  • Author

I should add that I did get all of the other blood tests you can get for celiacs and they all came back negative, except for the one mentioned above that was positive.

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beachbirdie Contributor
beachbirdie
Posted

I should add that I did get all of the other blood tests you can get for celiacs and they all came back negative, except for the one mentioned above that was positive.

It is common for people to test positive on only single tests. Doesn't make them any less positive!

Good luck!

beachbirdie Contributor
beachbirdie
Posted

Sorry for the duplicate post. Don't know what happened!

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