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

Celiac Misdiagnosed As Fibromyalgia?

mrstrishch

Recommended Posts

mrstrishch Newbie
mrstrishch
Posted

Hello all! I'm new here... just found you all a few days ago, but have been reading and reading since then. WOW, so much here!

Anyhoo... I was reading an article in a magazine a couple of weeks ago about celiac disease and it said that at least 15% of people who have been diagnosed with fibromyalgia actually turn out to have celiac instead. Woah... that's quite a lot in my opinion. Well, I was diagnosed with fibromyalgia almost 10 years ago, have had symptoms for over 12 years. Things just continue to go down hill. After reading that article I started researching on the internet. It seems I have quite a few of the symptoms of celiac, but I've had so many dr.'s in the past basically think I'm a hypochondriac that I don't want to bring this up quite yet. I actually didn't dr. at all for over 5 years and just recently went to a new dr. because of pain and depression. She's very understanding of the fibro, and I don't want to look like a hypochondriac again. Soooooooooooo...

I'm going gluten-free for a while. I figure if there's a 15% chance that this could be the problem after all, then it's worth a try. If there is a noticeable difference then I'll talk to a dr. about it.

How long does it take to see results?

Has anyone else dealt with being misdiagnosed with fibromyalgia?

My mom has been diagnosed with fibromyalgia as well (several years before I was), and one of my sons (16yo) shows symptoms and another son (18yo) has problems concentrating that have always been attributed to borderline ADD (he doesn't have the hyper part). I'm trying not to get my hopes up that this might be what's wrong with all of us... something that actually has a chance of being treated by diet and leave us feeling better than we have in years. wow... trying not to go there.

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

Celiac.com Sponsor (A8-M):


gf4life Enthusiast
gf4life
Posted

Hi Trish and welcome to the board. :)

You may want to bring the subject up to your new doctor before trying the diet. It is a simple blood test to start and it may very well just get you a diagnosis. If you choose the diet first you could mess up your future test results and any hope of convincing other family members to get tested could go down the drain.

Please do not let the doctors make you feel like you are a hypochondriac. Take the article in with you if you want to to let you doctor see where you are getting your information, and write down all of your other celiac symptoms so you don't forget once you are there. It might help to mention that others in your family have similar problems.

God bless,

Mariann

mrstrishch Newbie
mrstrishch
Posted
  • Author

Thank you for your reply and your concern, Mariann! I'm going to show my Beloved husband the thread about reasons to get tested and we'll discuss it from there. Our reasoning up to now is that we know our other family members will have no problem either going gluten-free or being tested if they see a difference in my own health. Also, with being *over*weight I guess I'm just afraid the dr.'s will roll their eyes. Even though I've read time and again that celiac sometimes manifests in weight gain, the medical community seems to not agree... at least those not completely informed. I've had very bad experiences with dr.'s in the past, so I guess I'm gun-shy. The other points brought up in the other thread were good, though, so we'll see... :)

cyberbec Newbie
cyberbec
Posted

Can you tell me the name of the magazine and the month the article was in? I would like to have a friend read it.

Thanks,

cyberbec

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,670
    • 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):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      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
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      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
      Inconclusive results

      By Scott Adams · Posted

      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
      Medication

      By Scott Adams · Posted

      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.