Taking A Poll

[MyMississippi]

Hi,

I am interested in seeing how many celiacs on this forum also have fibromyalgia.

Please sign in----

and tell me which diagnosis you had first --- fibro or celiac??

And did you have fibro symptoms BEFORE you began to suspect Celiac?

And---- have you found that you pick up more fibro symptoms as the years go by???

Thanks for the info----

[Worriedwife]

My husband has fibro and Celiac. He was diagnosed with the fibro first, and he had symptoms for ten years before he was diagnosed with the Celiac. The change in diet has not seemed to help with his pain, although we realize that it's necessary for his overall health. He has seemed to get a few more syptoms over the years.

[dlp252]

  MyMississippi said:

and tell me which diagnosis you had first --- fibro or celiac??

And did you have fibro symptoms BEFORE you began to suspect Celiac?

And---- have you found that you pick up more fibro symptoms as the years go by???

I have it. I suspected that long before Celiac because one of my chiropractors found 11 of the pressure points were consistenly sore and nothing, absolutely nothing helps my chronically sore stiff muscles. She is the first one who mentioned fibro. The MD I see for Lyme was the one who "officially" gave me that little extra, and that was more for insurance company purposes than anything else. He was surprised that none of the other doctors had given that label to my pain. My fibro is definitely caused by the lyme I think. My symptoms are pretty consistent, but are actually a little better since I've started addressing the lyme, mold and metals issues and have been eating a diet that limits my inflamatory foods.

I should probably wait to post this...forgive me if I don't make sense. I had an endoscopy yesterday and for some reason I'm still woozy from the drugs, lol.

[tarnalberry]

I developed fibro about four years after celiac, and was dx'ed (fibro) about nine months later. I think it was stress, from work.

[sixtytwo]

Diagnosed with fibro about eight months before being diagnosed with a gluten intolerance. When I get gluten, I really don't get too bad of G I symptoms, but my fibro kicks up and I am exta tired. The better I do on the no-gluten diet, but better off I am with the fibro situation. I also have a thryroid condition which also is closey tied into this whole thing. I suspect you are trying to confirm a definite link between celiac and fibro, and there is no doubt that there is. Barbara

[Ursa Major]

I was diagnosed with fibro several years before I figured out I am gluten intolerant. I had fibro symptoms from the age of three......... or should I say symptoms of food intolerances? Because they appear to be one and the same.

Just eliminating gluten wasn't enough to eliminate the pain. And I was in such excruciating pain that for five years I was on codeine 24 hours a day.

I now realize that lectins (gluten is one of them) cause the 'IBS' (a garbage diagnosis, of course) that is so common to people with fibro - wonder why? They also cause the terrible joint pain and buckling knees and ankles, as well as emotional outbursts/rages I used to get.

Foods high in salicylates caused the severe muscle pain, sore throats, irritated/painful bladder.

Both of them caused migraines, but the worst offender for migraines were tomatoes (I can't tolerate any nightshade foods).

I still haven't figured out what causes a lot of other health problems (severe fatigue, adrenal and thyroid problems, inability to lose weight), but on my limited diet I don't have joint and muscle pains any more, my gastrointestinal problems are gone most of the time, my Tourette's tics have diminished, I don't get those rages any more, and I can think clearer most of the time.

[ptkds]

I was somwhat diagnosed with fibro last month by my rheumy. Most of those certain spots hurt me all the time. Instead of just feeling a little pressure when they are touched, it feels like I am being stabbed. But my pain isn't too bad. I am not 100% convinced I have fibro, though since my pain is not that intense. I was diagnosed with Celiac first, and the pain didn't start until last summer, about 6 months after being diagnosed w/ Celiac. I suspect I had celiac most of my life, but was never diagnosed.

[Generic]

I was diagnosed with Celiac 20 years ago and fibro about 5 years ago.

[Worriedtodeath]

Dx with Ibs at 14, dx with fibro at 22 after a huge weight gain in virtually a few weeks and crippling joint type pain symptoms. After putting everyone on a gluten free/dairy free diet 5 months ago to solve the baby's issues with gluten have had virtually complete diappearance of ibs, joint pain, muscle fatigue, extreme chronic fatigue. Never been dx with Celiac but get horribly sick when I eat gluten now.

Stacie

[curlyfries]

Fibro diagnosis several years before celiac symptoms (gastrointestinal). Muscle problems seem to be improving recently, and I am noticing that I have more energy than I've had in a long time.

[ravenwoodglass]

I was diagnosed with fibro a few years before celiac. Just like with my arthritis I have been rather lucky and it receeded within a few months of being gluten free. The only time I have fibro issues now is if I eat food my body doesn't like. When it flared up with some other symptoms last year it prompted me to test with enterolab and when I removed the offending substances, soy in particular it went away again.

[tarnalberry]

I wanted to point out - and hopefully one of them will reply - there are a sizeable number of people on the board that think fibro isn't it's own condition (note: I didn't say "this is in your head"! I think we all despise that phrase ), but rather a symptom of another problem. While I don't necessarily agree and can't speak for them, I wanted to get a fair representation of other conversations that have happened on the board. (MyMississippi, I would encourage you to search for those posts and read them; lots of good information.)

Based on what I'm seeing here, I'm under the impression that what we call "fibromyalgia" may really be more than one thing. I think that the 'tender spots' that people are tested for just happen to be sensitive areas in the body that gather stresses, and those stresses can come from a chemical source (like a food intolerance), a physical source (like an accident) or a psychological source (like a relationship or job). And I think those "types of fibromyalgia" (I'm being loose here on purpose), can resolve differently and probably should be treated/approached somewhat differently. Just MOO (my own opinion), of course.

[Ursa Major]

  tarnalberry said:

I wanted to point out - and hopefully one of them will reply - there are a sizeable number of people on the board that think fibro isn't it's own condition (note: I didn't say "this is in your head"! I think we all despise that phrase ), but rather a symptom of another problem. While I don't necessarily agree and can't speak for them, I wanted to get a fair representation of other conversations that have happened on the board. (MyMississippi, I would encourage you to search for those posts and read them; lots of good information.)

Based on what I'm seeing here, I'm under the impression that what we call "fibromyalgia" may really be more than one thing. I think that the 'tender spots' that people are tested for just happen to be sensitive areas in the body that gather stresses, and those stresses can come from a chemical source (like a food intolerance), a physical source (like an accident) or a psychological source (like a relationship or job). And I think those "types of fibromyalgia" (I'm being loose here on purpose), can resolve differently and probably should be treated/approached somewhat differently. Just MOO (my own opinion), of course.

Tiffany, I agree with you. Just like IBS is a bunch of symptoms, not a disease in itself and can be caused by different things, it is obvious to me that the same goes for fibromyalgia. I have all 18 tender spots plus other painful spots all over my body besides those. And they have not resolved with diet. I've tried massage as well, but again, it won't take them away.

Now I am looking for other causes of illness, like heavy metals, maybe Lyme disease next. I know I have intolerances, and eliminating certain foods has resolved a lot of my symptoms. But there must be another underlying cause of feeling so bad, and I WILL find it!

[RiceGuy]

  tarnalberry said:

I wanted to point out - and hopefully one of them will reply - there are a sizeable number of people on the board that think fibro isn't it's own condition (note: I didn't say "this is in your head"! I think we all despise that phrase ), but rather a symptom of another problem. While I don't necessarily agree and can't speak for them, I wanted to get a fair representation of other conversations that have happened on the board. (MyMississippi, I would encourage you to search for those posts and read them; lots of good information.)

Based on what I'm seeing here, I'm under the impression that what we call "fibromyalgia" may really be more than one thing. I think that the 'tender spots' that people are tested for just happen to be sensitive areas in the body that gather stresses, and those stresses can come from a chemical source (like a food intolerance), a physical source (like an accident) or a psychological source (like a relationship or job). And I think those "types of fibromyalgia" (I'm being loose here on purpose), can resolve differently and probably should be treated/approached somewhat differently. Just MOO (my own opinion), of course.

I also agree. From what I've read, fibro is the name given to the symptoms, and like many other conditions, the cause is unknown. All the pains I had came after going gluten-free, and resolved with supplements, which I still take. It is amazing how many intolerances and deficiencies lead to pains of one type or another, but how many doctors are willing to try dietary changes and supplements before prescribing drugs?

[hubub]

I was diagnosed with Fibromyalgia, IBS & Dermititis Herpetiformis all at the same time. HOWEVER, no one ever said you have celiac. No one did lab or egd tests. (This was 4 yrs ago) at a large clinic and 2 different Dr.'s. One doc was a rheumatologist and the other dermatologist.

I should've know I had Celiac. My mother was dx Celiac about 20 yrs ago. duh!

[Jaimepsalm63]

I was diagnosed with Fibro after the Celiac, but before the gastroparesis.

It's all tied together IMHO. My GI doc says they are and is working on gathering info too.

[mn farm gal]

I have been Dx with Fibymialga more than 2 years ago, however I don't believe I have it an longer. I had been doctoring for many years since I was hospitalized in 1998. I was sick before that but my parents were from the era of if your not dying your not going to the doctor. So when I became hospitalized many test were done and nothing found, did test for many years switching doctors and clinics different towns and the whole ball of wax that comes with that. However I went gluten free July 10 of 2006, and yes I still have my chalanges at times but I usually know why. Before going gluten free I had numb legs, pain everywhere, at time I couldn't sit I had so much but pain, weak, mind things and ect. Now working with a Naturalpathic and taking many nutritional supplements I have no pain unless I run out of something. If I do run out of something I will see some of these things returning, she is a blessing to me.

[Janessa]

My doctor was ready to diagnose me with fibro and wanted to write me a prescription, but I decided to do an elimination diet first and turns out corn was causing all my fibro symptoms

I agree with some people on here that a lot if not all people with fibro, IBS ect.. can cure it if they can find out the root cause of their pain.

[lynbaker]

I have fibromyalgia, and was diagnosed several years before I received my celiac diagnosis. Have been absolutely gluten-free for four years, now, and the fibro symptoms are no better, and actually seem to get worse as time goes on.

[frec]

I was diagnosed with celiac six years ago and with fibromyalgia 3 months ago. I am sure I had celiac for years but the fibromyalgia really only started in the last few years. It worsened abruptly when I started menopause last year.

I think fibromyalgia is a catch all term for "you hurt but we don't know why". It's like diagnosing someone with asthma. There is probably a genetic basis for it, there is a biological (not mental) mechanism that causes it, and there are lots of possible triggers. Gluten definitely causes joint and muscle pain for a lot of people but not for me. Neither do the other foods I can't eat. I think my fibromyalgia was triggered by severe stress in the last few years. It might be a nutritional deficiency related to celiac but I've tried so many supplements. I'm doing the Candida diet right now to see if that might be impairing my absorption--but after two months I don't see any difference.