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Anyone Else Diagnosed With Fibromyalgia Before Going Gluten Free?


Jamie10

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Jamie10 Newbie

Before I went gluten free, I had been diagnosed with fibromyalgia, and the pain had been pretty severe for about three years. I'd had intestinal issues my whole life, but I only know this now that I'm better, because at the time I thought it was normal.

I was told to try going gluten free by an Eastern medicine person (doctors couldn't figure out anything, so I thought I'd give it a shot) and the pain and my intestinal issues went away. I didn't know about celiac or that I could have a blood test/biopsy for it, but from what I've read, I probably have non-Celiac gluten intolerance since I got better really quickly after giving up gluten. In this case, I'm glad I didn't tell any MD what I was doing, because they probably would have told me that there was no point in going gluten free if my biopsy came back negative.

I was wondering who else might have had a similar experience? I know lots of people with fibro see a reduction in symptoms after giving up gluten, and I want to understand the connection more.

Also, I've been gluten free for a little over two years, and I've heard conflicting thoughts on the benefits of doing a gluten challenge, and I'd rather not do it, because I really don't want to feel that pain again, and I already know that being gluten free helps me. Thoughts on this?


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lesliev523 Rookie

It was suggested by my primary doctor, because she just didn't know what else to call my wide array of issues. Originally she thought lupus, but I was ANA negative.

I went gluten free about two weeks prior to going to a different doctor. Once she had my history, symptoms, and I told her the relief I was starting to have she immediately told me to NEVER HAVE GLUTEN AGAIN.

That was two weeks ago. My constant, chronic pain is gone. My energy level is up. My brain fog is pretty much gone. My balance is better. And my hand tremors are almost completely gone.

Gluten is evil because it can cause so much havoc in the body!

Adalaide Mentor

With a lack of answers my doctor eventually called it fibro and we tried a couple of different medications with little to no benefit from them. At four months gluten free I can say that as long as I take it easy I have about as many good days as bad, which is a significant improvement. My ANA has always come back on the high side of normal and my doctor refuses to rule out lupus, especially since being gluten free hasn't turned me into a functioning human being yet. At any rate, I told my doctor I wanted to stop all fibro treatments, and honestly don't feel any different since stopping.

mamaw Community Regular

My fibro issues has lessened since going gluten-free.I do still get flare-ups occas...

GF Lover Rising Star

Through the years I have been diagnosed with a wide variety of issues. First, I am bi-polar and have major depression, anxiety disorder, OCD and social phobias to name a few. I had a heavy drinking problem in my late twenties and a mental crash with too many pills that ended in ect treatments during a month In the hospital I have always had digestion issues, reflux, heartburn, bloating, cramping before finishing a meal, malabsorbtion and constipation that could only be controlled with the liquid they give you before a colonoscopy. I also have spinal stenosis, peri-formis syndrome with occasional sacroilitis. I have had more migraines than I can count. I was also dx with fibro some years back. I also have a hypoactive thyroid with nodules growing on it and an un diagnosed autoimmune disease. They talked lupus, sjogrens but nothing is sticking. I'm now experiencing neurological problems and am scheduled for an eeg and an emg. I sometimes think this may all be connected and other times I think its just to much to overcome. The gluten free diet has resolved all of the digestive issues but I'm afraid the other stuff is to progressed to get any better at this point. To say the least, this intolerance to certain foods is far reaching and evolving everyday. Take it all a day at a time and be well!

Greyhound Rookie

For me, the constant aching was the second worst thing (exhaustion being the worst) and I began to fear I'd developed fibromyalgia, but all information about it said it could be identified by certain points on the body being particularly tender; I didn't have these points.

So I wasn't dignosed with it but the pain became so bad that it did cross my mind more than once that it might be fibro.

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    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
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      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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