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Misdiagnosis

I was recently diagnosed with Celiac Disease and have been told I never had Fibromyalgia - that in order to be diagnosed officially and correctly that it has to be proven that the patient reacts badly to 8 lbs of pressure at the pressure points. I was poked. With a finger. Not a tool that reads pressure. When this doc that says I don't have fibro showed me on the machine what 8 lbs of pressure felt like, I couldn't believe it. It didn't hurt until 25 lbs. Now... I have all the symptoms of Fibro, all the pressure points, and three separate doctors have diagnosed me that way and told me there was nothing they could do for me. Then I was told I have Celiac. I have been on a gluten-free diet for a week and a half, and I feel at least 20% better already. I can't believe it. In all these years no one even thought to check me for Celiac. So please, everyone who reads this, make sure you've been checked for Celiac as well. The symptoms can be nearly identical. AND Celiac can CAUSE FMS. I'm blown away at how little the Medical Community knowns about Celiac....the diagnosis is incredibly unreliable (even with the intestinal biopsy, false negatives are common) and the only real way to tell if you have it is to go on a Gluten-free diet. If you're desperate for a change, it is certainly worth a try! Best of luck to all!
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Avatar universal
Thank you....that is what he also said.....that cutting out some gluten products would not hurt at all....................I could try and fit it in with my Crohn's diet.....lol.....and maybe just drink "water" ...j/k......I have a friend that has taken gluten from her diet even though she does not have celiac disease and she finds it helps....

I will certainly take you up on that....and because we live in the same area....you would probably know where I can buy some.....they are really hard to find out here in the country......take care
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Avatar universal
Glad to hear it, tjoan.  Recent evidence has shown that the bowel examination (and usually biopsy) are not 100% perfect, though they were once thought to be.  Between blood test and biopsy, it's supposedly pretty much air-tight, though some people suspect there may be other forms of gluten sensitivity that don't present like Celiac.  So it might not be a bad idea to give the diet a try for a few weeks just to be safe, but it certainly sounds like that's not a likelihood.  If you decide you want to try it and would like tips on things you can eat, send me a PM.
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Avatar universal
I saw my Internal Medicine Doctor today for a follow up with Crohns Disease and I asked him about Celiac Disease......he had checked that out when they went down with a camera to check out my small bowel.......recently and I do not have Celiac Disease and/or Lyme Disease .....Lyme Disease is not something seen in our area...and I am happy to know that I have neither......
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Avatar universal
I am seeing my Internal Medical Doctor tomorrow and I am hoping that we can discuss having the test for Celiac disease.....at least remove that idea of maybe having it on top of everything else..........my Crohn's disease has been really under control since I took a huge dose of antibiotics for  "pylori" bacteria that was found after I complained about "acid reflux" and this IMD....had mentioned that it was just "possible" that this "pylori" bacteria could have also contributed to all the diarhea that I had been having...however after the intial "antibiotics" I had diarhea for a total of 3 weeks before it all turned around........I certainly have to watch the diet.......however....it is really hard to differentiate between the pains of everything I have including Osteoarthritis and Sciatica.....oh well....C'est la vie...for me anyway.......take care
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Avatar universal
There's new stuff being discovered about Celiac all the time, so it's entirely possible.  As far as the FMS, since nobody knows what causes it, saying Celiac might cause it is not something anybody can prove or disprove, so who knows?  Certainly it can cause a lot of symptoms LIKE FMS or CFS if nothing else.

For myself, I know I failed the blood test, and I've run into a few others that have as well, so I've wondered about the 1% error rate, myself.  Given that, who am I to argue with a doctor wondering about the accuracy of the biopsy! :)
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Avatar universal
Wow! Thanks for all the posts! I guess I hit a nerve. Yes, I was told by a doctor that Celiac can cause FMS, but I don't have any proof of that nor am I sure I believe that. I also don't know many specifics about the trigger points and their link with Celiac (if there even is one), I just know my own symptoms. Speaking of which, you asked, so here's my list of symptoms pre-gluten free diet:
Joint pain
Headaches
Gastro-intestinal difficulty
Sleeplessness
Fatigue
Foggy-brain
Numbness
Tingling
Weakness
General Pain
Neck and Shoulder Pain (Especially)
Neuralgia
TMJ Symptoms
Anemia
Knotted Muscles
Etc...I think that's most of them...I'm sure I missed one or two but you get the gist.

Now about the tests- I've been in contact with two different docs in two different locations with no contact between them (L.A. and Akron) who have separately come to the conclusion that the intestinal biopsy test is not anywhere close to as accurate as previously thought. One of them even believes that some patients CANNOT be diagnosed that way because they have a slightly different type of Celiac.

Please keep in mind that all of this is merely what I've been told, some of it through a secondary source. I'm just trying to share all the info I have to help get an open discussion going.
Good luck all!
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Avatar universal
Don't feel too bad...I'd known they were there, but didn't bother actually using them until you mentioned it and I went "You know, it IS kind of small...maybe I should actually PRESS one of those buttons while I'm mentioning it." LOL
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Avatar universal
Thanks for the tips......I thought I had Crohn's disease all of my life......but they used to call it IBS in the early years......(I was diagnosed with fibro in the eighties) in Ottawa.........and then in 2001 I was diagnosed as having Crohn's.....sometimes I am all mixed up (lol) at what I actually do have......but I did have a resection of the bowel 5 yrs. ago and a fistula drained because of the Crohn's.......either way....I feel like **** mostly...the hubby has M.S. and we are so alike in our pain it is not funny.....both of us have been having severe pain in the backs of our head and neck and in our lower back and hips this past month....we both have had a terrible cold/flu....which is now getting better.........lol

P.S. Thank you for the hint on the fonts...now I feel like a dweeb....lol
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Avatar universal
Actually, Celiac is a lifelong condition, it's just more often caught in childhood.  If not caught in childhood, it's most often found in your 30's or 40's (in many, it seems to improve slightly during the 20's, most likely because you're in your prime and deal with the symptoms better).  I haven't read any studies, but anecdotal evidence points to seniority as the next most common time for it to be caught, most likely due to other conditions exacerbating the Celiac symptoms.

And you're absolutely right, the font is small by default.  At the top-right of the first post, however, you'll find three A's in a row.  Click on those to change the font size. :)
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Avatar universal
Okay...lol......the font is so small in here....I missed that.....maybe something her Doctor said.....from what I have read.....Celiac has a lot of the same symptoms as Fibro.....and Celiac was more commonly known as a children's disease but that it has changed and many adults up to their 80's are being diagnosed with it.
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Avatar universal
Whether or not she meant that Fibro can be Celiac in disguise, what she said was "AND Celiac can CAUSE FMS".
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Avatar universal
Celiac disease itself does not include trigger points, however there are many who have this illness as well as a dx of FMS.

While many with FMS suffer from IBS, there are symptoms of Celiac that would make it distinictive from IBS.  I can locate no studies/research that would indicate Celiac disease causes FMS.  If you could post your source for this information it would be greatly appreciated.  

Take care and hope your progress continues.
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Avatar universal
This makes a whole lot of sense to what happens to me often.......I have ended up in emergency thinking it had something to do with the Crohn's disease, and many times Celiac disease, and Gluten is brought up by person's in the medical field.......I eat a lot of products with gluten because of the Crohn's Disease.......and I have been thinking along the lines of Celiac Disease for a while now....and this is confirming my suspicions for sure.....
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Avatar universal
Would you mind posting what you symptoms were?
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Avatar universal
Celiac is one of those disease that gets missed often.  It causes a multitude of symptoms. I've never been checked for it myself.  Not one doctor has even suggested it.  I thought about asking myself though.  I'm glad you posted this so that others who are looking for answers may find and actual, identifiable cause for their problems.
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Avatar universal
Actually, both the blood test and the biopsy are considered fairly reliable.  Modern blood tests get false negatives only about 1% of the time, assuming you're on a gluten-containing diet.  I'm not sure of the biopsy accuracy, but it's considered to be the gold standard.  It used to be thought to be a flawless test, but recent research has shown that that's not the case.

Also, if you search back a couple of days, you'll see my comparison on my CFS vs. my Celiac.  Pain points from Celiac that match the ones from FMS are not something I've ever heard of before, but as anybody knows within minutes of researching either of them, symptoms can be so bizarre and random in both cases.

Anyway, best of luck on the gluten-free diet, and if you have any questions about it, by all means, feel free to ask.  I've been on it for a little over 3 years now.
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Avatar universal
I agree, everyone should be tested for Celiac, but as you said, the tests aren't 100% reliable. There is a stool test by Enterolab that can diagnose gluten intolerance and can also tell you if you have the Celiac Gene.  It's expensive, so I agree the best thing to do first is try a gluten-free diet for a while and see if you feel better. I did the test by Enterolab because I tried gluten-free diet and learned how difficult it is for me to adhere to a strictly gluten-free diet, so I wanted confirmation. Turns out I have the Celiac Gene (can thank one of my parents for that one) and I have an active gluten intolerance which means my body is having an autoimmune response to gluten. I try to avoid gluten as much as possible because it's just creating more strain on my immune system which is already compromised.  
Thanks for posting this great information!  I am glad you are improving.

My Best to You,
Ree4tu
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