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Fibromyalgia Or Celiac?
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72 posts in this topic

Aloha!

I have recently been diognosed w/celiac.

Was previously diognosed w/fibromyalgia I have alot of pain and very tired. I was wondering if anyone thought they had fms but it was really celiac and they recovered? Suzanne

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I was told I had fibromyalgia. Though, most of the pain I was in from it seemed to go away.. overtime. That was before I went gluten-free though.. still working on trying to improve on the gluten free diet.

So, yeah.. I have been diagnosed with it, but it more or less went away (as in I don't want to walk pain, still get some like right now lol).. before I found out about Celiac disease.

If I'm not mistaken though fibromyalgia is basically like IBS. Doctors aren't sure why it's happening, so they give it that name so they can say something. So.. could be possible things would improve for ya. =)

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HELLOOOOOOOOOOOO--I have fibromyalgia, diagnosed 12/03. Take major amounts of magnesium w/ malic acid to contol the pain along with Mobic and anti-inflammitory and it has settled mostly from my shoulders to my fingers. My DIL who is the mother of my granddaughter who has celiac disease suggested that with my history of migraines/depression and now fibro, and also the tummy tenderness, I just might have a gluten intolerance. I got a blood test, negative, but the doctor just rolled his eyes when I suggested there might be a connection between the fibro and a gluten intolerance. The blood test can be a false/negative. I have read on the internet (and copied off for him) there ther can be a connection. I also think I could have a lactose intolerance--gluten intolerant people often do. I sent for the complete test kit from entero lab and am going to find out once and for all if I am intolerant to gluten and lactose. I am eating lactose and gluten free and am feeling better. I read on this board, however, that it can take quite some time to completely heal. I just couldn't believe it when I saw a thread devoped to fibromyalgia!!!!!! Keep talking to me. Barbara

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I truly think there is a real connection between fibromyalgia and gluten. In fact, my internist is KC treats chronic fatigue, ms and fibromyalia and he is fasinated with the gluten connection. Many of his patients have seen improvement in syptoms by being gluten-free. When I saw him last week he said some pts. see improvements in days to weeks (and occasionally some see no difference.) Since being gluten-free (10 weeks now) my joint pain has gone from rating it a #8 on a 1 - 10 scale to about a #2 or 3.

This relief of joint pain keeps my motivation going.

So I've gone from a DX of chronic fatique to fibromyalgia to now celiac sprue, so it's interesting to look at the big picture and say what is what...

All I know is although this is an new challenge I feel better than I have in a very long time.

Melissa

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I was also diagnosed with Fibromyalgia....in 1999 after my second child was born.

After three years of pain, I was diagnosed with Celiac... b/c of my anemia... and after about 6-9 months gluten-free my fibromyalgia symptoms went away completeley. The doctors say this is a coincidence.... I definetly know it is related to gluten.

I was diagnosed with celiac disease in March 2003...

I have only had the pain of fibromyalgia when I have had a gluten accident!

Life is good.... the pain does go away!!

Ruth

PS Barabara...all my blood tests were negative for celiac disease... my biopsy was positive. Some people do not have postive anitibodies for gluten, but most definetly have celiac disease. Because of my negative blood tests, the diagnosis took a long time. Thank God for a gastroenterologist who saw so many celiac symptoms and insisted on the biopsy!!

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Oh, Gee, Melissa and Ruth, you have made my day. I just know that you are right when you say that fibro and gluten intolerance are connected. I am so better now that I am on the gluten-free program and I am still working as hard as I was before. My tummy is starting to feel better too. I really have read a couple of articles where doctors have said their fibro patients have said their pain is so much less and they have said they are very skeptical, but if the patient says so...then "oh well".......that makes me so mad. Doctors can be so maddening sometimes. My doctor ran "a bloodtest" ,but my suspicion is that he ran one for celiac disease which I do not have. I suspect I have an intolerance to gluten which is another thing. I am in this alone, it seems, but I feel I am on the right track. I do so want to thank you for taking the time to respond. To have two things wrong with me that are so remote and then to have them related........where else would I have found people to make that connection with. My email is sundown@nnex.net if you would like to keep in touch, I sure would like to keep a dialog going with you. Barbara

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hi everyone i posted this in another topic but i am gonna paste it on here also

Hi everyone

had to reregister i was itching to type to you all..lol i was practically levitating when i found this forum and your replies to my post

ok here goes without scaring the hell outta u all

4 months ago my life changed i lost my mum she was 58

8 years ago she suffered very bad arm and shoulder pains and EVENTUALLY the doctor diagnosed her with fibromaralgie (bad spelling) which by the way only diagnosed this after she diagnosed herself after research

for a few years she was on painkillers then took plurecy and had rapid weighloss went from 11 stone to 6 stone, she was like this for a year and then her doctor diagnosed her with celiac, she stuck to her gluten free diet faithfully and for the next 2 years she didnt put on weight but the doctors dint send her for any more tests.

6 months ago she started taking very bad jaw pains( at first she just thought it was toothache) and also chest pains,then when she was in agony her doctor said it was a condition called trigeminal neuralgia, they never even sent her for an MRI scan, just wrote her a prescription for anti convulsants (typical of UK GP's) so when eventually the whole side of her face was numb and her speech was lost they sent her for a MRI

2 days later we had an appointment for the results, firstly they said they thought it was breast cancer, or maybey lung cancer and pointed it with a glare and frown she was a 5 a day smoker (what a blow for my mum) or possible a condition called neuro sarcasiodosis and they would put her on steriods and she had to have all sorts of MRI and bone scans that week.

throughout that week dont forget my mum although had a new lease of life after the steriods still could not speak to me, can you imagine how heartbreaking that was for both of us!

so after the test she was admitted to hospital for a brain biopsy as they thought it might have been a brain tumour at that point, they did not do it that weekend and let her out for the weekend, she took a viral infection at home and went back to the state she was in before the steriods ( which was horrific) you cant imagine out of respect for my mum i will not say what she was like! needless to say she nearly dierd at home that weekend!

she then was in hospital for 2 months they did not get anything from the brain biopsy they put tubes down her throat to see if they could get a specimin from her lungs they even asked us if she had been to america in the past few months???? they even thought it might be TUbercilosis!

they eventually came up with a condition called central nevous system vascilitis which is inflamation of the blood vessels and she basically was having mini strokes

i still have nighmares about the state my mum was in at the hospital as it was not diagnosed as a cancer she could not get in a hospice and have private time with her family and friends and more privacy , she was in a public ward for all to see!

she died in hospital i wasnt there i didnt make it on time i was 15 mins late!

they asked to do a post mortem i agreed and 3 months later we all attended thinking they were going to tell us it was a sinister tumour

IT WAS THE CELIAC!!!

the evidence was in her spleen they said it was the size of a walnut!!

they said that you can only detect the enlarging of the spleen not the shrinkage of it and with her spleen so small that she could not fight infection and she somehow caught the virus you find in chickenpox or it could have been stress a lot of things could have done it, jeez the common cold could have....plurecy nearly killed her 2 years earlier!

how tragic, my mum died of this condition, i do not want to scare the hell outta you all i just thought i would post this to let you all know about 2nd third and forth opinions from your doctor.

i miss her and think about her every day, if my mum had had a more switched on doctor she could have had her spleen removed and been on low dose antibiotics for the rest of her life,,tragic!

hugs

muffin

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now i am seriously levitating..lol

my mum was a fit woman, and the only condition she suffered from when i was little was very bad migranes 20 years ago!!!

and the next thing she developed derviticulitis which is IBS then she had a duadinal ulcer, then osteoperosis then fibromarlgia then trigeminal neuralgia!

i asked her specialist at the post mortem is this a heridetary condition three times he said no!!!!

a year ago i had bad stomach cramps i couldnt even have dressing on salads but i was visiting the toliet 5 mins later!!

he now wants me to go for a blood test that he says will show certain atibodies in my blood that will be evident if i haver an ulcer!

i did

x

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I'm sorry to hear about your mom. That's awful.

You might want to check with your doc to find out what blood tests he's running, just to "be sure" ;-)

(BTW, Diverticulosis and IBS - while often causes simlar symptoms - are different, so if you're concerned about the former, make sure they don't settle for the latter diagnosis! A brief description of diverticulosis)

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MUFFINXX---You have my profound sympathy at the untimely death of your dear mum. I am 59 years old and am listening to what you say. If the only thing I have to do is avoid gluten to stay healthy, then I CAN DO THAT. Thank you so much for your addition to this particular thread. Know that the time you spent adding you comments here were well spent, because my mother has had lots of gasto problems, yet has lived to the age of 86. If I am to live to be old, I would like to not have all the problems she has had, and hopefully by eating the gluten-free (and probably lactose-free) life, I may be able to do that. Thanks again for your kind sharing of your story. Barbara.

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Muffinex - thank you for your story. We each have to stay on top of our own health conditions and not assume the doctors have all the answers.

My mother died in March of this year. She was 74 and dx with kidney failure 3 years ago. The sad thing is that she had been under the care of a cardiologist for 10 years and he did little to control her Blood pressure. After a decade of high B/P she damaged her kidneys and they don't discover it until she has only 12% useage.

My mother took her dialysis 3 times a week and never complained, never said "why me", she took it on as her lot in life and followed her diet to the letter.

My last conversation with her we were discussing my upcoming ultrasound and other lab work and she was giving me her words of encouragement. She said "What ever they tell you to do, you just do it, any special diet, you do it". She died the next day of a sudden heart attack and those words give me strenght above all and I know I can "do it".

Barbara, I'm with you. At this point in my life, I just have to be gluten-free and I can do that too! I do watch my lactose and only certain products cause me problems.

I'd like to hear from more people who have seen improvement from fibromyalgia symptoms after being gluten-free.

Melissa

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my thoughts are with you!

i always say to myself, i could have done more, and by the way, the nurses in the hospital were totally fed up with me anyway...there is not a question i didnt ask or a medicine i didnt look up on the internet

its funny, i am reading your replies and i thought the first thing you all would have said was take your doctor to court...lol i know americans been there plenty of times and u cant spit on the sidewalk withouth geting a letter from your lawer!

i have a boyfriend that is a vegetarian and wouldnt contemplate eating food that was put in a microwave...i am starting to think he has a point!

im am so glad i found this forum

when my mum had the rare fibromaraglia (in this country...god the doctors here are so condecending)..i backed her all the way!!!

i am type O negative just like my mum

i will stick to my gluten-free diet without the diagnosis

x

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Just checking in today to see how you are all doing. Did you notice that 117 people are interested in this topic. I am amazed. There REALLY is somthing to the fibromyalgia/gluten intolerance connection and no one will ever convince me otherwise. When they say that a person knows their own body better than anyone else...even their doctor, I really believe that. I ate icecream without even thinking about the lactose thing last night and have pains in my tummy today....it was gluten free. Going on a ten day vacation with lots of eating out, so that should be a real challenge. Hope I can find you all when I get back. Barbara

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I was diagnosed with fibro last year but it was actually a severe reaction to gluten. I had never had such intense muscle and joint pain as I experienced - the weird thing was that it came out of no where just woke up with it one day - went to the ER they gave me pain meds which barely helped the pain - sent me to my family dr who said I had fibro - I brought up the gluten issue and she had no clue what gluten even was (surprise, surprise). She gave me other meds - I usually don't like to take meds at all but the pain was so intense I was desperate. Of course I did my research on the meds and they were supposed to be gluten-free but they weren't and I got sicker and sicker - even more intense pain, intense dizzyness, the back of my neck hurt so bad I could barely turn my head and I had this horrible smell in my sinuses like a sinus infection. Went back to the ER - told them "something is seriously wrong with me" - they did every test they could think of and another big surprise could find nothing wrong and told me to go back to my family dr. At first I did not connect the new meds with all of this because I had researched them and they were on a gluten-free list of meds. But after much reflection on the past 2 weeks I realized that I got sicker when I started taking those new meds so I did some more research and found the meds on a different list which said the meds contained wheat starch. At least I had my answer but even after quitting taking them it took about a month to get back to normal and I had only taken 1 tiny pill a day for not even 2 weeks! All of the pain, dizzyness and other symptoms were gone. I went back to the family dr because I wanted to share with her that I did not have fibro but a reaction to gluten. She was actually very interested and I faxed her some articles I found that related fibro to gluten. I have not seen her since but hopefully she has educated herself about gluten and will share the information with other fibro patients.

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It amazes me how we "the patient" so often has to be the "educator" to the docs we see! Along with the gluten problem, I was bitten by a tick many years ago (15) and had text book reactions and to this day, I see doctors for referals on other problems who look me in the face and tell me it's impossible for me to have ever had Lymes dx.

I had a doc tell me lately that the reason I had trouble with my grocery shopping (Major joint pain walking on the concrete floors and the store is HUGE, so it's like walking a marathan to go up and down the isles), He said I was having panic attacks from being in large spaces! I asked how could that be when I often speak in front of large groups of 300 people in meetings and love being on the stage. If anything would give a person a panic attack it would be public speaking.

I feel like anymore I have to educate myself with as much information as I possibly can so I am informed on all the issues. I get upset with some of the docs but I figure maybe if this info I share with doc helps the next patient it's worth it.

I've been gluten-free for 12 weeks (june 16th) and have drasically reduced my joint pain! No more restless leg syndrome either! The last 6 years the joint pain has totally disabled my life and for years the docs would dx with all types of names (including firomyalgia, chronic fatigue, herpes 6 virus, and all would aggree "well, you are really sick" . It took a GI specialist that I saw in June who was a consult because of my ongoing anemia and abdomial pain. He put the joint pain / abdomial pain / anemia connection together in 15 minutes.

Melissa

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Glad to see this subject resurected again......I have fibromyalgia and I haven't yet been diagnosed as gluten intolerant. Did the complete Enterolab thing/sent it in last Monday and am awaiting the results--blood test came back negative, but I am not sure the doctor even did the correct one. However, I haven't done anything about checking to see if the medicines that I am taking are gluten free....I will be doing that TODAY. I am taking some supplements that I am buying at WalMart and will look on the bottle to see what is in those...there could be a problem!!!!!!!!! My fibromyalgia has settled into the area from my shoulders to my fingers and nowhere else at this time, which I think is unusual and it bothers me mostly when I am in the bed. I have been eating gluten-free since the first part of August and highly suspect that I may be lactost intolerant too. Had icecream and milk at the beginning of the week plus oatmeal, so don't know which one upset my tummy really. Shouldn't have done both at the same time, I guess. Just getting back into the comfort zone today. Hope we can keep this fibromyalgia thread going. Thanks. Barbara

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Barbara,

If you have been gluten free and then ate oatmeal, then that's probably the culprit. Unless you live in Europe, most oats in the US (not sure about Canada) are processed in the same place as wheat and rye. It's not that oats contained the gluten we can't eat, it's the cross contamination process.

I was diagnosed with fibromyalgia 3 years ago and had a huge flare up recently. Mine gets really bad in my shoulders, which triggers my migraines. It's also painful in my legs and arms. It's calming down now, but it seems to have coincided with eliminating glutens from my diet. I'm convinced that celiac disease and Fibro.... are related for sure.

My sister was just diagnosed with pernicious anemia, which also can be triggered by celiac disease (I think), but she refuses to get tested for celiac disease. However, she continues to complain about headaches, upset stomach, bloating and other symptoms of celiac disease.

Good luck to you.

H.

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You know what else that I just realized......two of the supplements that I have been taking have gluten. The pharmacist says that gelatin has gluten and the fish oil capsules and the glucosamine capsules that I have been taking both say gelatin. I thought that gelatin was o.k......says in my readout about o.k. foods to buy at the grocery store that Jello is o.k. to eat. What do you know about this? I think I will try to start a thread about this. Barbara

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My fibromyalgia has settled into the area from my shoulders to my fingers and nowhere else at this time, which I think is unusual and it bothers me mostly when I am in the bed.

How odd that you should say that! I was never diagnosed with Fibro, but I have had pain and tingling with numbness in only my arms when I lay down, too. I also had "cold streaks" where the numbness was, so I thought something was wrong with my cardiovascular system! My doc told me it was because of the way I was laying, and the surface I was on. I think of it now only because you mentioned it: it went away completely when I went gluten-free. Nothing showed up on tests except a bound up nerve, but that was only in one arm, and not where I was having problems. It had to have been the gluten, I still lay the same way, on the same surface!

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barbara, I'm not sure why your pharmacist would tell you that gelatin has gluten. (I certainly hope he didn't tell you glucosamine had gluten!) Perhaps he's concerned that manufacturers are using wheat to prevent the capsules from sticking, but that actually isn't that common. Do call the company before taking his word for it. I cannot imagine why gelatin would have gluten added to it.

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Boy, I am really confused now. I posted a question about Jello and someone did a search about it and it is made from the hooves of animals and Jello is definitely on the list of things a person can eat that is gluten free. Up until now I really thought that this pharmacist really knew his stuff. He did tell me yesterday that about half of the doctors he knows think that fibromyalgia exists and half of the doctors he knows knows much about gluten intolerance..........this is scary. Thanks all of you for replying to help me with this. Barbara

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    • I would suggest you test your daughter through a doctor. The Enterolab tests are not recognized as accurate or reliable by the medical profession. See this link from the Chicago Celiac Disease Center: http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Sorry.  Something is wonky with either my connection or celiac.com! Your results are not specific...borderline.    That is why your PCP should refer you to a GI for further celiac blood tests and a possible endoscopy.  I recognize the lab report form.  Kaiser?  If so, a PCP can not order a full celiac panel.  Only a GI can do so.  Why bother?  Because if you test like me, the TTG tests are always negative.  Request the EMA and the DGPS test via a GI.   Do not be fooled by a lack of abdominal symptoms.  I was only anemic -- no abdominal issues at all.  Constipation is a symptom.  Your PCP is thinking is just historical Classic celiac disease symptoms.   Please email your doctor for the referral if you think you might have celiac disease and want a solid answer.    
    • Hello, I have frequent canker sores (roughly comes back every couple of months). Some blood test results are as following. Component Your Value Standard Range TISSUE TRANSGLUTAMINASE IgG 0.31 Index <=0.90 Index Tissue transglutaminase IgA 0.96 Index <=0.90 Index My doctor said that result is unspecific, and I unlikely have celiac disease, since I do not have other abdominal symptoms. For reference, I do have frequent constipation, excessive gas, frequent canker sore, etc. Do you think an upper endoscopy is recommended? I am a little hesitate considering the risk of this procedure and the fact that my symptoms are not that bad. I appreciate all suggestions.  
    • Hello, I see you posted this a long while ago, and perhaps--I hope-- it's no longer a matter of concern, but I thought I'd mention that shortly before I was diagnosed for celiac's, I had distinct yellow blotches on the corners of my eyelids toward my nose. Some months after I had stopped eating gluten, the yellow gradually went away, and--as it just reappeared now several years later, I googled the issue again.  I am only speculating here, but I do believe it is related to liver problems, which, in turn, are related to celiac's. I don't think liver function tests cover all aspects of liver health. I say this because when I was pregnant I developed a temporary liver condition called interhepatic colestasis of pregnancy (ICP), but my liver function tests had been fine. (The condition is diagnosed based on bile levels in the blood, not on liver function). I discovered upon some research that (of course!) ICP  can be associated with celiac's disease.  My hunch is this-- that celiac's presents two problems to the liver: 1) the malabsorption of nutrients--esp. Vit. K2-- that are vital liver health; 2) since gluten registers as a toxin to the immune system (I think?), perhaps the liver gets overloaded processing so much toxic material. Or perhaps there's some other reason. At any rate, poor liver health and celiac's do seem to be linked, according to a few articles I've found. Anyway, hope your problems are resolved now.  
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