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Fibromyalgia Or Celiac?


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71 replies to this topic

#31 tarnalberry

 
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Posted 25 September 2004 - 12:35 PM

lol, since it's based on hits, not individual people, I think I'm responsible for somewhere around 5% of that number. it is an interesting topic, however, and there does need to be more research done on the subject.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

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#32 red345

 
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Posted 25 September 2004 - 10:14 PM

--.
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#33 Guest_barbara3675_*

 
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Posted 26 September 2004 - 10:56 AM

Red345.........I am quite sure this is fibromyalgia as I saw a rhumatologist and all the other things were ruled out and the pain has settled into ONLY my arms at this time, no pain anywhere else. It is totally muscle, ligament, tendon pain and not the bones or joints and althought I am aware of it during the day, I can totally put it in the background, it really only bothers me when I lie down in the bed and it so hurts when I wake up in the morning. I hot shower and getting to moving around makes it better. This is typical fibromyalgia. I had hoped the there would be improvement with the gluten-free diet, maybe it is helping by keeping it only to my arms, who knows. As far as the Enterlab goes, I can't really say. I sent them my order with my charge card number and they swiftly sent me the box with everything needed to collect the stool specimen, the swabs to collect the gene samples and complete instructions to do the testing and for sending it back to them. I have done all of this. I had to use another method of sending it back to them other than the one they prefer, and I did it with their approval. I live in a pretty remote area where their approved carrier doesn't go....it was DLH or something like that I had never heard of, I ended up using FedEx, it has to go overnight. I bought the most comprehensive one. I am still waiting for the results which I understand come in the form of an email. I am hoping that they are detailed and easy to understand. I will let you know when they come. Barbara
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#34 red345

 
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Posted 26 September 2004 - 11:53 AM

Great, thank you so much, Barb. I really appreciate it.
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#35 Guest_barbara3675_*

 
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Posted 04 October 2004 - 07:51 PM

The results are in and I have a definite gluten sensitivity and also a sensitivity to cow's milk. Their suggestion is that I have no gluten or cow's milk in my diet at all or I will surely develop celiac disease. I have printed off this information for my doctor and will present it to him when I next visit. If he is unaccepting of the information, then I will search for a more understanding doctor. Enterolab got back to me with results in less than two weeks. I consider them to be very professional and thorough and their reporting seems to be very skilled. Red345, if you would like to see a copy of the report, I could send you one, I would need your mailing address as I don't know how to scan something or don't have a fax. I guess I could type it all into this format for you if you would want me to, you can let me know. Barbara
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#36 jsib

 
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Posted 06 October 2004 - 05:08 AM

Hi,
I am being unoffically tested for fibromayalgia by my chiropractor which involves testing for tender trigger points when in alignment. (my body does not like cars...another story. )There are many foods that contribute to inflammation. (beef,chocolate,caffine...) Are you near any holistic practioners. Acupuncturists, natropaths,? They often listen better than traditional MD.
I have read online that fibromyalgia is often connected with Celiac. Know what chronic pain is like. I am the worst at cheating at the ant-inflammation diet which also includes staying away from gluten and processed sugar and many favorite foods. Thanks for your story it was a wake up call.
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#37 muffinxx

 
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Posted 11 October 2004 - 07:16 PM

red 345

Please read my earlier post,

after 4 years of a Fibro diagnosis and 2 years of a celiac diagnosis they sent my mum to a cardio specialist as she was getting a whooping cough and pain down her arm, he was alarmed by the fact that my mother was in so much pain however didnt display any of the normal tendencies that were expected after the routine excercises.

I thought about sending my mum to a chiropractor, as i thought it may be muscular.

I would say if any celiac sufferer felt the need to see a cardio specialist then ask them to concentrate on blood pressure! in particular ask about a condition called vasculitis especially nervous sysem vasculitis.
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#38 muffinxx

 
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Posted 11 October 2004 - 07:39 PM

I was wondering how practitioners check your metabolism!

Is there a test to see if you have a high or low metabolism and what are the statistics of your rate of metabolism changing throughout your life... and what are the reasons for that change?

Up untill i was about 13 i had a very high metobilsm i could eat whatever i wanted and not put on a pound and was very hyporactive, i turned 16 and my metabolism slowed right down i got very tired easily and my weight went up and down. I am a type "o" negative.

I pretty much stayed on the same foods, and i wonder if it was that i was in the era that we started to use microwaves or companies used different additives in there foodstufs or was my body just changing with age, maybey a pubestent downfall.

And if your metabolism can switch from high to low ( whicj is the obvious one with age, can it switch from low to high?

I still feel that fibro and celiac is a very grey area for misdiagnosis. if the diagnosis was so easy as say "super size me" then we would all be laughing!
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#39 llj012564

 
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Posted 12 October 2004 - 07:36 AM

All I can say is that I was told I had F/M and was at the point of daily pain meds. After being gluten-free since Feb04 no more pain meds and I had never heard there could be a link . I dont think I ever had F/M. Now the only time I hurt like b4 is if I eat the wrong thing.
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#40 HAPPY DOG SUZ

 
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Posted 12 October 2004 - 08:10 AM

:unsure: Aloha,
To all those who were dx w/ fibromyalgia before the dx of celiac.....
How long did it take once you were gluten-free for the body pain to go away?
I am going on my 7th week gluten-free and am still in alot of pain!!! :(
Need some encouragement! Thank You Suzanne
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#41 Guest_barbara3675_*

 
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Posted 12 October 2004 - 12:46 PM

Regarding your question about how long it takes before the fibro pain goes away, I think it depends on how much pain you have and how bad your gluten intolerance was. I have been on the gluten-free diet for about 9 weeks now and cf for about 2 since being diagnosed by Enterolab. I have some pain, but not nearly what it was before. I have been on Topomax (for migraines)and I have decided to cut it in half and see what will happen. It is VERY expensive and I would like to start taking less medicine. I hope we can keep this fibro/celiac thread alive so we can keep checking on each other. It obviously is interesting to a lot of people. I take magnesium with malic acid for my fibro and that helps a lot, you might want to consider that. Often people with migraines and fibro are seriously short in that department and that helped me more than anything before I went gluten-free. I also take Mobic, a strong anti-inflammitory---would like to cut back on that sometime too. Barbara
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#42 shandango

 
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Posted 21 April 2009 - 05:58 PM

I was diagnosed with Fibromyalgia in 2000. Didn't find out about Celiac until 2005 and I suffered with pain and bowel issues for years before that. I went gluten free in 2005 and felt much better, not perfect but better. I was in so much pain that I had already chosen to turn to some serious pain meds. I started eating gluten again after a year to test the theory and it didn't seem to both me again for about another year.

Now I am gluten free, lactose free and off the pain meds. I am a firm believer that I never had FMS to begin with, I have Celiac. My blood test came back negative in 2005 and I never got a biopsy but as far as I'm concerned if the gluten free diet is working and I react as bad as I do, it's Celiac.

I had pain in every muscle of my body, the worst was arms and legs. I had restless legs syndrome, chronic fatigue, migraines and pretty much couldn't handle any activity for too long. I have now officially been gluten free completely for 2 weeks with no cross contamination or slip ups and am now also completely vegan. I feel wonderful. The last to go was the leg pain and I haven't had to take any pain killers of any sort for 3 days and this is after 8 years of being drugged up on something.

Is there a connection? Yes. I think the connection is that most doctors don't know enough about everything and they create these mysterious syndromes and diseases just to have a diagnosis without all the work. The reason I never stopped searching for an answer was that I was told FMS is not progressive, it shouldn't get worse and I was getting worse day by day. I knew something else was wrong.

I hope more people find the answers I have because so many are suffering needlessly.
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gluten free, rice free, preservative free, lactose free

and still loving life!

#43 sixtytwo

 
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Posted 23 April 2009 - 07:28 AM

How interesting that you should reserrect this thread. I was a frequent poster on it as Guest barbara....but now am back on as sixtytwo. That was in 2004 and now it is 2009, lots of time gone by. I have recently been having some headache trouble which I thought was migraines and really it ended up being "nerve headaches" according to the doc. He thinks the fibro has settled into my shoulders and prescribed Lyrica. I actually am better. I still take Mobic and am cutting back severely on Topomax. I am gluten intolerant and eat gluten free. This fibromyalgia/celiac thing is certainly a factor and doctors, for the most part, just do not get it....still. I think my fibro would be so much worse if I did not eat gluten-free. I am convinced. Barbara
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#44 miche

 
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Posted 01 December 2009 - 09:26 PM

I was meant to find this site , to be sure! I am pretty convinced that my fibromyalgia condition is related to gluten I had a negative blood test also however I had been off gluten for about three months and resumed gluten two weeks prior to the test , I read that you have to resume gluten for about five months in order to get an accurate diagnosis , having said that I resumed a gluten free diet for another four months and found that my flares were not as bad plus my stomach issues were better, however I broke the diet again and resumed gluten , WHAT PUZZLES ME THOUGH is that it took about a month before I reacted and came down with the worst flare ever , the pain has been incredible , so now I am confused , can it still be celiac and take this long to react, I suspect that's my problem but I am not sure , I know I also react to fructose which I had ( onions and dates on top of the bread ) all I know is that I would gladly go without gluten if I knew it would keep me from having a flare like I just went through , I actually cried all week , still it's a huge commitment to make when one is guessing I already have so many food allergies that my diet is severely limited , does anyone know if the reaction can take a while to surface after resuming gluten , I would be thankful for any insights anyone can provide.
Miche
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#45 nasalady

 
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Posted 01 December 2009 - 11:46 PM

I was meant to find this site , to be sure! I am pretty convinced that my fibromyalgia condition is related to gluten I had a negative blood test also however I had been off gluten for about three months and resumed gluten two weeks prior to the test , I read that you have to resume gluten for about five months in order to get an accurate diagnosis , having said that I resumed a gluten free diet for another four months and found that my flares were not as bad plus my stomach issues were better, however I broke the diet again and resumed gluten , WHAT PUZZLES ME THOUGH is that it took about a month before I reacted and came down with the worst flare ever , the pain has been incredible , so now I am confused , can it still be celiac and take this long to react, I suspect that's my problem but I am not sure , I know I also react to fructose which I had ( onions and dates on top of the bread ) all I know is that I would gladly go without gluten if I knew it would keep me from having a flare like I just went through , I actually cried all week , still it's a huge commitment to make when one is guessing I already have so many food allergies that my diet is severely limited , does anyone know if the reaction can take a while to surface after resuming gluten , I would be thankful for any insights anyone can provide.
Miche


Hi Miche,

Welcome!!

This is a VERY old thread....you might want to start a new thread so that you get more attention and more answers...?

I know that I have both fibro and celiac disease, and if I eat anything with gluten I have symptoms about 12 - 36(max) hours later. Definitely not anything like a month. But everyone is different!

So I don't know what to tell you.....except that fibro is somehow linked to autoimmune diseases, that's for sure. It shows up most often in people who have various autoimmune disorders. But the medical profession still doesn't understand that much about fibro.

I've been gluten free for a year now. Most of my classic celiac disease symptoms are gone: the mouth sores, the diarrhea, the migraine headaches, the stomach pains. But I have several other autoimmune diseases plus fibro: I have a lot of symptoms that are NOT gone. In fact, I'm currently in a lupus flare condition, which is not a good thing at all. Vertigo, nausea, double vision, photosensitivity, yuck. I'm still hoping that my other conditions will go into remission; lots of people on this board have had miraculous recoveries, even if it took a while!

In any case, the best thing you can do is listen to your body. What is it telling you? Do you feel better when you are gluten free? Then don't eat gluten! You don't need a doctor's diagnosis to figure out if you feel better gluten free or not....thank goodness!! :)

Good luck to you!
JoAnn
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Multiple autoimmune diseases, including celiac, Hashimoto's, psoriasis, autoimmune hepatitis, RA, SLE. Also have fibromyalgia.

Tested Fall 2008: bloodwork, biopsy negative; HLA DQ8. Doctor believes results negative due to prednisone and Imuran taken for autoimmune hepatitis.

Dx with celiac disease because of dietary response, genetics, and family history of celiac disease.


Dx with Lyme Disease Jan 2010; Lyme likely triggered some of the AI diseases.

Gluten free since 25 Nov 2008




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