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

Fibro & Celiac


Tiredsean

Recommended Posts

Tiredsean Explorer

Had anyone on this site have both fibro & celiac and once going gluten free got rid of their fibro???


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



Celiac.com Sponsor (A8-M):



Adalaide Mentor

I was diagnosed with fibro a couple of years before my surprise celiac diagnosis. After trying both Cymbalta and Lyrica and having neither help, I gave up on the idea of ever feeling better. Much to my surprise, the longer I have been gluten free (just over a year now) the less all over pain I have. It hasn't gone away, and because I also have CRPS it can be difficult for me at times to gauge pain in the rest of my body, but I can say that outside of the times that I am glutened it is rare for the pain in the rest of my body to bother me. It isn't that I don't have any, it is that it is so small compared to how it used to be that it is hardly worth noticing.

Tiredsean Explorer

Mmmmmm very interesting,your post has made me very happy indeed :) thank you so much!! Question if I may ask, what's that other item you suffer from?

GottaSki Mentor

I was diagnosed with Fibromyalgia seven months after my Celiac Dx.  I had horrid reaction to the first fibro drug I was given - Savella -- not surprising as I have been given a host of meds over the years for my autoimmune symptoms -- all failed miserably.  I did have some success by supplementing targeted amino acids - sadly this was short-lived and the relapse was the worst flare of my entire life.

 

I am now doing very well on my VERY limited diet -- last year this time I was the "human amoeba" and needed hubby to carry me to the bathroom.  Today I am vertical and slowly regaining a very fulfilling life.  I hope meds help you more than they did me or my daughter -- but if they fail -- take a look at other foods - may help and can't hurt.

 

ps...my daughter was dx'd with fibro at 13...she turns 30 soon and while still battles many AI issues daily - her fibro has improved gluten-free and returned when one of her lupus meds changed and had hidden gluten in it.

tarnalberry Community Regular

I was the opposite - I had been gluten (and dairy) free for years before dealing with fibromyalgia.  Based on what's happened leading up to it and through it and since then, though, I strongly suspect that it was - amongst other things that simply made me prone to it - an incredibly stressful job that lead to the problem.

Tiredsean Explorer

I'm not officially fibro yet ,my doc isn't convinced yet.At 37 male and fit prior to my injury he isn't leaning towards fibro just yet.Given my symptoms are some tender points the main problem is muscle rigid ness for example when I flex and let go my muscles are like molasses going back to their original position.No real pain unless I over do it .Plus I have a constant post nasal drip and swollen sinuses.When I get a system wide flare my sinuses hurt the most,I get really itchy ears,pain in muscles and anxious .Not really fatigued or anything ,and all my symptons take days to get over.I equated this to everytime I get glutened by accident or my own stupidity.While I'm off gluten I still get aches and pains so my doctor is testing me Thursday for Lyme disease,systemic candida ,histamine intolerence and I'm gonna ask for adrenal saliva test depending on $$$ .I believe that my problem is in my gut and gluten had a lot to do with it.I took gluten out and I don't need tums or Zantac anymore ,now I need to know what else is causing my sinus/muscle issues.

frieze Community Regular

Complex Regional Pain Syndrome

Mmmmmm very interesting,your post has made me very happy indeed :) thank you so much!! Question if I may ask, what's that other item you suffer from?


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



Celiac.com Sponsor (A8-M):



Psyche Newbie

I was dx with Fibro in 1999 while in the Navy after an injury. Though I have a new Celiac dx, I have done low carb and gluten free many times in the past few years and each time the Fibro did get a lot better.

Adalaide Mentor

Mmmmmm very interesting,your post has made me very happy indeed :) thank you so much!! Question if I may ask, what's that other item you suffer from?

 

I was slow in getting back, but it got nailed for me. Yes, it is CRPS. Sort of makes fibro pale in comparison for me, but I still wouldn't wish fibro on anyone. Good luck with the gluten free helping you.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,668
    • Most Online (within 30 mins)
      7,748

    CDR40
    Newest Member
    CDR40
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.