Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Fibromyalgia


floridagrl

Recommended Posts

floridagrl Newbie

Are there any here who were diagnosed with fibromyalgia and later diagnosed with celiac who actually became pain free after going gluten free? If so how long until the pain subsideded?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gfcookie Newbie
Are there any here who were diagnosed with fibromyalgia and later diagnosed with celiac who actually became pain free after going gluten free? If so how long until the pain subsideded?

there are also those who had fibro and were treated for depression, and the fibro magically dissapeared. imo fibro seems like IBS, they know somethings wrong, but they just leave it at a blanket statement because they're not sure why you're in pain with no blood work showing anything.

floridagrl Newbie
there are also those who had fibro and were treated for depression, and the fibro magically dissapeared. imo fibro seems like IBS, they know somethings wrong, but they just leave it at a blanket statement because they're not sure why you're in pain with no blood work showing anything.

I have a lot of digestive issues is why I ask. Hearturn, gas, constipation. The doctors do not sem to know a whole lot and have not been able to help me. I am not depressed. If going to a psyciatrist would help then I would ve all for it but it is hrd for me to belive that depression can cause nerve pain so bad.

neesee Apprentice

I have miserable muscle and joint pain. It's gotton real bad for about the last 5 years or so. I have days I can barely walk around. I take a lot of ibuprophen just to get through the day. I have been truely gluten free for 20 years now. Even personal care products! I didn't hurt like this 20 years ago! I don't think it has anything to do with gluten at all! It may possibly from having celiac, but being gluten-free doesn't help it at all.

In the past 10 years, my dad died, my son had 3 brain surgeries, and my dh became a bad diabetic. Maybe that's the problem. I don't know. I am almost 54. Maybe it's just old age. lol :D

happygirl Collaborator
Are there any here who were diagnosed with fibromyalgia and later diagnosed with celiac who actually became pain free after going gluten free? If so how long until the pain subsideded?

Fibro was one of my many (mis-)diagnoses in the months leading up to my Celiac/gluten diagnosis. Before my diagnosis, my muscle and bone pain was so horrendous that my dr. told me that I would end up in a wheelchair within a few years. I was 23.

I went gluten free, and my issues resolved. My Celiac symptoms (including the fibromyalgia/muscle pain) return when I consume even small amounts of gluten.

I don't think that *every* case of fibro is Celiac, of course, but I bet there are others who don't have fibro (have the pain, of course) but have pain because of Celiac.

Best of luck.

loraleena Contributor

NeeSee

Have you ever cut nightshades out of your diet? They have been implicated in joint and muscle pain. These include tomatoes,potatoes,eggplant and peppers. Also I would look into candida overgrowth as well.

Worriedtodeath Enthusiast

I was dx with it at age 23 and told I would probably be in a wheel chair by 25 as mine acted like RA. I could hardly move and if I sat still I would need help getting up. COuldn't sleep, hurt everywhere, couldn't stand to be touched. Put on low dose anti-depressants to act like muscle relaxers. It got the worst of the pain under control but didn't do anything for the joint stiffness. 5 years later, I had children and had to quit the pain pills. I then quit my job, lowered my stress activities, and learned to take naps everyday and learned to schedule my life with a high activity one day and no activity for several days.

Enter 3 rd child who can't eat wheat/gluten but isn't dx as a Celiac. I went gluten-free with her mostly to make sure her food tasted good and low and behold joint pain and stiffness has completely disappeared after 4 weeks. I can sit and get up without shooting pains up my legs, I haven't had my legs give way and make me fall and the biggy .... I put my coat on and had not one ounce of pain at all and can raise my arms above my head without any pain, stiffness, soreness afterward, or weakness. I'm not dx as Celiac but I don't care since being pain free for the first time in the last 15 years is enough for me to remain gluten-free.

Interesting that dairy cause a very mild leg and knee ache. I'm removing it as well.

I've had runny tummy problems since age 14 and it has always been declared "stress". When we did the gluten challenge with the baby and we all were eating heavy gluten meals, I was in horrible pain and was back to the point of needing some drugs to get thru the day. It is amazing it is gone and I feel fine. Even in the mornings getting out of bed. No pain.

Stacie


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



neesee Apprentice
NeeSee

Have you ever cut nightshades out of your diet? They have been implicated in joint and muscle pain. These include tomatoes,potatoes,eggplant and peppers. Also I would look into candida overgrowth as well.

I don't eat a lot of nightshades, so I don't think that's the problem. I do eat a lot of sugar however, and my blood sugar is now in the pre diebetic stage. I should cut out the sweets I guess. I really don't think it'll help the aches and pains, but then again you never know. It's worth a try.

neesee

Judyin Philly Enthusiast

HI

You might want to ck out this thread from a previous post.

Open Original Shared Link

There is so much info in here.

You'll just need to read and pull out what applies to you.

I have found such a connection to the fibro pain that returned after being gluten-free for over 2 1/2 years.

When I cut the diary and foods high In oxalate's out I'm mostly free of fibro pain.

i have found swimming in a warm therapeutic pool helps me so much.

Judy

tarnalberry Community Regular
there are also those who had fibro and were treated for depression, and the fibro magically dissapeared. imo fibro seems like IBS, they know somethings wrong, but they just leave it at a blanket statement because they're not sure why you're in pain with no blood work showing anything.

actually, there are some theories that suggest, chemically, what is going on with fibromyalgia that make it nothing like IBS in the "wastebasket syndrome" category. CSS (central sensitivity syndrome) diagnoses share some commonalities when it comes to brain chemistry, particularly in the reduced functionality in the parasympathetic nervous system. at least one theory suggests this is because the sympathetic nervous system is running so "hot" for so long (due to the excessive non-physical stresses that we put on our body, in comparison to the sum total of stresses that our body used to deal with tens of thousands of years ago) that we've burnt out our parasympathetic nervous system, to a certain degree. (we end up producing insufficient quantities of dopamine and seratonin, for starters.)

the problem is that the chemicals that are affected are very difficult to test for in the general blood system, and going in and testing chemical levels in the brain is too invasive of a diagnostic test for every day use. additionally, they're still studying fibro patients to find out what the differences are in general. hence the lack - so far - of standard laboratory tests.

as for the original question, I'm one of the opposites. I had been gluten free for four years, and casein free for three (and soy light for two or so), and was diagnosed with fibro early last year. were pretty sure we caught it rather early, and it's quite likely that it's stress induced in a very "classic" way. but you may find that it was a mis-dx for you; the only way to know is to try the diet and see how you do! good luck! :)

gfpaperdoll Rookie

For people that are in pain, I suggest a grain free diet, if you have already gotten rid of the other common food intolerances, like gluten, soy, dairy, nightshades, going grain free should get rid of all your pain. Most all those gluten-free grains have some level of cross contamination, plus you could just be reacting to that grain. I have learned if I have a symptom, I look for the food that caused it. I now have no symptoms & feel wonderful!!!!

happygirl Collaborator
For people that are in pain, .... going grain free should get rid of all your pain.

This is a blanket statement that does not apply to many, many people. There are various reasons why people are in pain, and for many, taking out all grains does not provide a solution. There may be a significant medical reason besides food-related problems.

Judyin Philly Enthusiast
This is a blanket statement that does not apply to many, many people. There are various reasons why people are in pain, and for many, taking out all grains does not provide a solution. There may be a significant medical reason besides food-related problems.

totally agree Laura......hi by the way

it's a complicated medical issue for sure

you photo is fantastic ............i can't believe the progress you have made over the year

i'm so happy for you

judy

Wonka Apprentice

I have celiac and fibromyalgia. When I realized that I had a problem with gluten (long before the doctor realized it) I went gluten free. My pain and fatigue reduced by 50%. I still have fibromyalgia but it has lessened significantly and is much easier to deal with.

ravenwoodglass Mentor

I am going to be short and simple, I never in a million years expected my celiac diagnosis to relieve my fibro and arthritis. Both have been in total remission since less than six months after I went gluten free. After over 40 years of living with daily pain and now going on 5 years pain free, totally.

RiceGuy Collaborator

Although I did not seek a doctor's advice, I believe I was having enough pain to be labeled with something like fibro, or worse.

Thankfully though, I no longer have such pains. What worked for me is magnesium and B12. The transformation is nothing short of miraculous to me. I still can hardly believe the difference, and you can bet I wish I knew ahead of time. Of course, I wish I knew about gluten ahead of time too.

I'm still trying supplements here and there though, as I research out various nutrients and how a lack thereof effects the body. Zinc may be another good one to try.

susieg-1 Apprentice

Short reply, I also find removing all foods with artificial colors, additives, preservatives, etc.... seem to help. mostly pain free after 6 mo's on gluten-free diet .

Wonka Apprentice
I am going to be short and simple, I never in a million years expected my celiac diagnosis to relieve my fibro and arthritis. Both have been in total remission since less than six months after I went gluten free. After over 40 years of living with daily pain and now going on 5 years pain free, totally.

I sure hope that more of my fibro and arthitis symptoms go away now that I know I have celiac and continue eating totally gluten free (I wasn't as careful when I thought that I just had an intolerance). Wouldn't that be nice?

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,342
    • Most Online (within 30 mins)
      7,748

    Setb1210
    Newest Member
    Setb1210
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
    • Skydawg
      Wondering about some thoughts on how long to wait to try to get pregnant after a gluten exposure?  I have been diagnosed for 10 years and have followed the diet strictly. I have been cross contaminated before, but have never had a full on gluten exposure. I went to a restaurant recently, and the waiter messed up and gave me regular bread and told me it was gluten free. 2 hours later I was throwing up for the whole evening. I have never had that kind of reaction before as I have never had such a big exposure. My husband and I were planning to start trying to get pregnant this month. My dr did blood work to check for electrolytes and white blood cells, but did not do a full nutritional panel. Most of my GI symptoms have resolved in the past 2 weeks, but I am definitely still dealing with brain fog, fatigue and headaches. My dr has recommended I wait 3 months before I start to try to get pregnant.   I have read else where about how long it can take for the intestine to fully heal, and the impacts gluten exposure can have on pregnancy. I guess I am really wondering if anyone has had a similar experience? How long does it take to heal after 1 exposure like that, after following the diet so well for 10 years? Is 3 months an okay amount of time to wait? Is there anything I can do in the meantime to reduce my symptoms? 
    • ShadowLoom
      I’ve used tinctures and made my own edibles with gluten-free ingredients to stay safe. Dispensary staff don’t always know about gluten, so I double-check labels or just make my own.
    • Scott Adams
      It's great to hear that there are some good doctors out there, and this is an example of why having a formal diagnosis can definitely be helpful.
    • RMJ
      Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before.  I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
×
×
  • Create New...