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Fibromyalgia - How Long Did It Take gluten-free To Notice A Difference?

laura3377

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laura3377 Rookie
laura3377
Posted

For those who have Fibro or other related syndromes, did going Gluten-Free help and if so how long before you noticed a difference? I have been diagnosed with Fibro by two doctors. I have been tested for Celiac and it was negative although borderline. I am trying different things to see if I can get some relief and have been unable to stick with Gluten Free for more than a couple of days although I have cut back considerably - poor planning and willpower I guess. I am determined to give it another go but don't want to get discouraged if I don't see results immediately.

Thanks!

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CarlaB Enthusiast
CarlaB
Posted

A borderline positive test is like a borderline positive pregnancy test ... it does not mean you are only a "litte" bit celiac any more than a borderline positive pregnancy test means your a "little" pregnant. Cutting back won't make much of a difference because you're still triggering the immune reaction.

I would try it for at least three months. It takes time to heal. If you don't see improvement in your fibro symptoms after a few months, then I'd start looking for what else is wrong ... though with a positive celiac test, you should still remain gluten-free.

Worriedwife Apprentice
Worriedwife
Posted

My husband was diagnosed with fibro years ago. He was just diagnosed with Celiac about four months ago. He has not yet seen any reduction in his pain levels yet. But, if you've got Celiac, then you have to be gluten free. There's just too many things that can go bad in your system, up to and including cancer. Carla's right, there is no "little bit Celiac". Also, it is possible to have a false negative test.

You might want to get tested again, or have an endoscopy done to check the villi in your small intestine. But, you will need to stick with the diet, and not get discouraged. There's a lot of naturally gluten-free food out there, it just takes a little research and planning. Good luck!

laura3377 Rookie
laura3377
Posted
  • Author

Thanks for the responses. The celiac bloodwork was done by my regular Dr. She referred me to a Gastro who said he would like to do an Endo/Biopsy because the bloodwork was borderline and he admitted that the tests can be false negative. I have a lot of symptoms - GI troubles of all sorts, weight loss, anemia, Vit D deficiency, muscle pain, fatigue, etc. I definitely will go gluten free but not sure on when the Dr. is going to schedule me for the Endo/Biopsy.

Again thanks for the help!

angelbender Newbie
angelbender
Posted

HI Laura! I was officially dx with Fibromyalgia 7 years ago after sitting under a Chronic Fatigue Syndrome dx for about 15 years. Used to be the exhaustion. Now I have the pain too but the

exhaustion is still the worst for me. Going gluten-free did NOT help my Fibro (or hasn't yet) but it HAS helped my "IBS," which is what I thought the bouncing from C to D was......or at least he D. It has taken me about a year of being gluten-free for my tummy to be appearing somewhere near normal (whatever THAT is!). I can't say that the 2 diseases are related. Until the last years, the Fibro dx

was what we call a "wastebasket" dx, meaning that docs would dx you with that once they ruled everything else out and didn't know what to do with you.....not unlike what they used to do with Alzheimer's before PET scans etc. The way that I have been dx with the Fibro is objective, meaning that my specially trained doc can actually feel the hard lumps in my muscles.....he does not base his dx on my comments on pain etc. That's the latest. This may sound like bad news but the problem is alot of Celiacs (until they heal at least) seem to have symtoms (pain, headaches, brain fog, emotional stuff, depression, you name it etc) that mimic Fibro. So maybe you don't have Fibro

and maybe you symptomes might get better on a gluten-free diet? Don't know; only time will tell. Since

you DO have Celiac, I would strongly encourage you to do whatever you have to do to be gluten-free. I don't really mind it so much......it's just the eating out that can be scary and a problem. I can make (or buy!) almost anything I want to eat, including little "pizzas" that I make on tostadas in my nuker. And they are lots of specialty items as well as companies that offer full disclosure on their ingredients.....I have my favourite ice cream, candies, pop etc.......you just need to find stuff you can live with. I hope that this post helpe you out some and wasn't too confusing. I don't get to the liberry very often lately since I'm moving but I think you could always send me an email if you have questions about the Fibro. Good luck!...........................Angel

kbtoyssni Contributor
kbtoyssni
Posted

Sounds like you have celiac! And being mostly gluten-free isn't going to resolve your symptoms - you have to be 100% gluten-free. I was also diagnosed with fibromyalgia before celiac and all my FMS symtoms went away when I went gluten-free. I think it took me 2-3 weeks to realize that my muscles and joints didn't hurt as much as they used to and probably 3 months for my symptoms to go away entirely. I'd also lost a lot of strength from lying in bed all day so it took me maybe 6 months to regain that. Stick with the diet for a few months - I'm sure it will help you feel better.

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