Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anyone Else Diagnosed With Fibromyalgia Before Going Gluten Free?


Jamie10

Recommended Posts

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,201
    • Most Online (within 30 mins)
      7,748

    Karen LK
    Newest Member
    Karen LK
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.