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Celiac Misdiagnosed As Fibromyalgia?

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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.


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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,



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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... :)


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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.




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    • Already had that looking on experience and in the end had to leave the room as it was unbearable just sitting there with people laughing at me not being able to eat, yup people are cruel and really show their colours at times like this. Tbh based on the reactions I've had from people my age so far the kissing thing will be irrelevant as no one will stick around to get that far. Since the diagnosis whenever the gluten stuff has come up I've been belittled and made the butt of jokes. Then even people who previously were OK with it started jumping on the bandwagon too. Seems like the alternative to the "bad ones" is no one, which is even worse @GFinDC it's the time thing that's really getting me down right now. Feel like I've lost out so much already and the thought of losing another year or two to this is driving me crazy, especially when I see others my age making the most of their lives and I know with this I can't do the same.  I'm exactly one of those people you described, never been interested in cooking and vegetarian too which rules out this paleo diet everyone seems to use as gut healing. Just adds to the feeling of being lost in all this and once I close the forum window I'm on my own. Still wondering if to do those Cyrex tests to find out early on which other foods may be problematic. Part of me isn't convinced they're scientifically proven enough to be useful but then others seem to have had useful result. Trouble is it's not cheap and already been drained money-wise by these private hospital visits so have to pick the treatments wisely...
    • Ifyour using local  agricultural products  check into and your state dept  of ag.  You can  also check to see the types of projects that are available.  GOOD LUCK  
    • Q: My friends are talking about gluten-free diets and gluten-free foods. ... In celiac disease, the immune system identifies gluten as a foreign invader ... View the full article
    • Yes, GFinDC you've got the gyst of what I am after. If I am reading your response correctly then, you think that inflammation in the gut caused by gluten ingestion is enough to trigger diarrhea, quite apart from the state of one's mucosa? That would be good news for me. More information on this inflammation reaction in the gut with gluten ingestion is precisely what I am after, but cannot seem to find. Because, as stated, as far as I know, D is mostly if not only, caused by flattened villi. OTOH, how interesting to hear from you, cycling lady, that you had flattened villi and no D! RMI, the link is quite depressing. Many appear not to have healed mucosas after a gluten-free diet. A repeat endoscopy is what is so clearly needed by many of us, but honestly I am a little wary of the risks.
    • No, they didn't test my ttg igg, which I was surprised about considering the low IgA and positive DGP Igg. (The tests they did were IgA serum, Ttg IgA, DGP Igg and IgA and gene testing) If he ever returns my call, I was going to ask him about that.  He initially wanted to set up a endoscopy, but I told him I had one last year (with my prior GI) and he said he'd take a look at it and we'd go from there, except that was two weeks ago and I haven't heard from him.  My prior GI did take biopsies, I believe to rule out H.Pylori and I was told biopsy results were normal, however, I didn't receive a pathology report or anything like that.
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