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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,

Mariann

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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.

Thanks,

cyberbec

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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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