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Fibromyalgia Or Celiac?
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I checked gelatin ingredients, too. One kind is made from hooves, skin, and connective tissue, the other kind is made from seaweed. All I can think of is that maybe he was referring to what Tiffany said about non-stick coatings. Ask your pharmacist to explain. Mine is very good about not giving me something I can't have, and he says gelcaps are just fine. One thing is for sure, we have to make sure to communicate with our pharmacists, too.

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there's a third kind of geletin, made from fish bones (so as to be kosher), too. but none of them contain gluten. (ever made stock from beef bones or chicken bones, and had it gel in the fridge? that is gelatin - it is a substance that dissolves out of the bone at high temperature.

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My fibromyalgia has settled into the area from my shoulders to my fingers

This happened to my hubby!! We were already gluten-free, so I started hunting for secondary food allergies, and BINGO!! He's allergic to pork! :o

He cleared up within a week after we went pork free!

Connie

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I also have bone, muscle, ligament. join, pain , pain in my right foot, especially, also right shoulder, aching, up and down arms. Tingling in hands and feet, burning across upper ab. Abdominal stuff seems to get worse at the same time as body aches. I have not been diagnosed with fibromyalgia, however my Dr. did suggest that I see a rhematologist at one point. I didn't take him up on it. Was already exploring celiac. Have been gluten-free almost 8 weeks. I have not been diagnosed. Yesterday was a good day. Today is a bad one. Yesterday I ate some veg. soup that I had frozen before I went gluten-free. I didn't remember that that would have barley in it, not very much, but not good. Also this mornng I ate a freshly steamed beet/ I haven't had beets for awhile. Had visited a Farmer's Market this week and got lots of nice fresh veggies. I hope the problem is the barley and not the beet. Also I changed brands of glucosamine-chondroitin to one from Hy Vee. It has added ingredients including various kinds of cellulose listed, The word cellulose has various long words connected with it in the list. I guess I need to find a different sorce of glucosamine. It's good to share experiences with others. Ruth S.

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Have you people notice that there have been over three hundered people that have read this thread? There definitely is some big interest in the fibromyalgia/gluten intolerance connection, I would say. It is just confirming my suspicions more and more all the time. I am anxious for my results to come back from Enterolab to see what they have to say as I had a negative blood test while on gluten/now eating gluten-free for about seven weeks. I do so appreciate all the information that I have gotten from this message board, I check it several times a day. Barbara

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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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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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Great, thank you so much, Barb. I really appreciate it.

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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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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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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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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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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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: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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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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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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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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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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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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Good Morning Miche-

I was recently diagnosed wtih Fibromyalgia - my stiff/achy/pain, severe fatigue, fogginess, heat intolerance and light sensitivity all became worse these past 8 months that I've been gluten-free.

It is my belief that long undiagnosed Celiac Disease caused my fibro symptoms. At diagnosis I was 43 and had had more mild versions of the fibro symptoms along with consistent unexplained weight gain, severe bloating, constipation and stomach discomfort for over 25 years! I'd reported the mild and worsening versions of these symptoms to a minimum of 8 primary doctors of the years -- they would run general blood work and thyroid hormone tests each time and each time I came up normal except for anemic for which they prescribe iron supplements and send me on my way.

Fast forward to Winter '07-'08 - my symptoms were quite bad so I insisted my new primary doctor continue to run tests until they figured out what was wrong -- it was about this time I was certain myself that it was serious and could not be "all in my head" -- from then on when ask by a doctor if I have depression I was able to respond that I am NEVER depressed until I feel sick for long periods at a time (6 weeks or more) and then I become depressed -- I have never felt depressed first and then become sick!

I kept on the doctors for another year and a half before they finally ran a tTG IgA on me which was marginally positive and led to me Celiac Diagnosis. As many on this forum can attest primary physicians NEED to be educated about the broad spectrum of Celiac patients -- that antibody test was the only test besides iron that wasn't normal in 50 blood tests over that last year -- I firmly believe no doctor even thought about it because I was overweight with c, instead of underweight with d!!!

My digestive symptoms have improved these past eight months and I am slowly losing weight (about 20 pounds now) during a period that I have been more inactive than any other period in my life!

As for Fibro-Celiac connection - I firmly believe there is a connection. Whether my fibro will improve with long term gluten-free living is anyone's guess.

Currently I am more interested in the neurotransmitter connection in Fibromyalgia. For me it makes sense that if ALL of my vitamins and minerals were very low upon dx, then it is not a leap to think that my amino acids were not absorbing properly as well. The eight essential amino acids we get from eating protein are so very important to many systems/processes in our bodies. I'll be supplementing with some targeted amino acids soon -- just waiting for a response back from celiac doctor to make sure it is not dangerous to take these supplements.

Guess this was a very long way of saying what JoAnn said very well -

"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!

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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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Thank you both for taking the time to answer my concerns, I will resume a gluten free diet , there has to be a connection , I also have a very low vitamin d level and autoimmune thyroid , I cannot find the newsletter I received yesterday and am quite upset that I may have deleted it , it was from the FM/CFS /ME association and it stated that a new blood test is in the making that actually shows antibodies in people with fibro and may well prove it's an autoimmune problem , it should be approved by the FDA and on the market within the next two years , wish I could remember all the details , maybe I will google it in the hope of finding it, it stated your doctor would not be aware of this study as yet , anyhow , more proof that it's not in our heads !

thank's again ,

Miche

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Thanks Miche---that would be great news for everyone with Fibromyalgia to have an antibody test -- so very difficult to be diagnosed with something that can't be proven.

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I am interested in this connection. I was dx (diagnosed) with fibromyalgia and celiac around the same time. I've always been basically sick and am in my 30s. I went gluten-free and have been for about over 1 year. I took a supplement that basically made my pain go away (was expensive and had gluten in it) before I was dx with celiac. Several months ago I found out that my vitamin D level was very low. I've been taking a supplement and my pain has decreased but not gone away. I want to get the rest of my levels checked because I believe that I may have some other deficiency that is causing this pain. Definately fascinating!

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    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
    • Hi DKH0614, I use aspirin, Pepto Bismol, and peppermint tea or Altoids peppermints.  Pepto Bismol has a soothing effect on the gut.  Pepto Bismol also has aspirin in it.  Peppermint is helpful for relaxing smooth muscle tissue and getting gas out of the stomach. As per KarenG, you may be reacting to dairy.  Dairy has a sugar called lactose in it that some people with celiac have a hard time digesting.  You could try avoiding dairy for a few weeks to see if that helps.  Or try taking lactaid type pills when you eat dairy. It doesn't take very much gluten to cause an immune system reaction.  So it is important to avoid even traces of gluten if possible.  The stuff is hard to avoid sometimes if people around you don't understand how much a small amount of it can affect your body. Let us know if we can help with any  more questions, or if you have concerns we haven't addressed. And welcome to the forum! Also, if you subscribe to the thread (notify me of replies) you'll get an email when people respond to your thread.    
    • After a year and half, if you are eating gluten-free, you shouldn't be having pain from Celiac.  Perhaps you need to find out what is really causing your issues?  Dairy/ lactose is an obvious first place to look.
    • Hi! I am 15 and have been diagnosed with celiac disease for about a year and a half now and I am woundering what do some of y'all use to relive some of the abdominal pains that come along with celiac/gluten allergies?  ( Ibuprofen,  Tylenol, etc.) 
    • Hi Laurabella, Yes, you could have celiac disease!  It is important to keep eating gluten until all testing is completed, including an endoscopy with biopsy samples if the doctor recommends it.  The doctors usually do want the endoscopy.  The biopsy samples of the small intestine lining (4 to 6 samples) are checked for microscopic damage that indicates celiac disease.  Gall bladder problems can happen with celiac disease.  Your pain could also be from intestinal damage in any part of the small intestine. Some things you could try while you are waiting for your tests to be completed are stopping all dairy, and taking peppermint tea for gas in the stomach.  Celiac disease damage makes it hard to digest dairy sugar (lactose) and that can cause bloating and pain.  Constipation and diahrea are also possible fun symptoms. Welcome to the forum!
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