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Aching Muscles - What's It All About?

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I'm feeling really achey today, as if I've got flu, but I haven't (no other symptoms, except exhaustion). I'm as sure as I can be that I haven't been glutened (no GI or other symptoms). This happens on and off to me on a fairly regular basis. Every few weeks I'll feel really achey for a few days as if I've got flu, but nothing else happens. I've been gluten-free for 4 months. Is this just something that will go over time? Or am could I be doing something wrong or missing something else? My tTg is much better, as are my iron stores and hmg levels. :huh: What are other's experiences of aching?

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I felt like that for a long time (continuously) and now off and on. I have been gluten-free since August, but totally gluten-free (I was making a brutal mistake for months with one product) since January. I still get it sometimes. I don't know if I can for sure chalk it up to celiac, but I feel quite 'flu-y'. Sometimes I get a light fever with it too. It passes. Not too sure what it is from!

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That is what I was getting the past 4 days and today I am fine. I am sure I was not glutened because I got no other symptoms. Sorry don't know what it is but just wanted to let you know I get it too!

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I used to get terrible aches in my muscles and joints. It would come and go randomly. I never did figure out what triggered it. However, I picked up jogging last year and the aches became a lot less frequent. Even just a brisk walk a few times a week helped lessen the aches. I'm not sure if it has anything to do with Celiac but it started not long after I began my gluten-free diet.

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Hi Susie;

My muscular & joint aches were from being Vitamin D deficient which most celiacs are. I supplemented with 2000 IUD daily until I got my values up to normal. Now I do 1000 IUD a day. I have read that 40% of our population is Vitamin D deficient; many Dr's believe it is a trigger for many autoimmune disorders. The medical community is trying to get the recommended IUD raised to 1000/day from the now 400/day. The hydroxy 25 vitamin D test is what is needed to get an accurate test of your vitamin D. In addition, exercise is also very important. If you are deficient you probably have been for awhile, so your muscles are not as healthy as they should be; exercise will help get them back to where they need to be. The other thing is to keep searching for hidden gluten. I have been gluten free for 2 years, and still get tripped up. The easiest spot is in things that say they are wheat free; I think every time I have tried something that was wheat free it was not gluten free!

Good luck, and stay tuned to this site; I have been helped much more here than from my Dr.

Dee

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Hmm...that's very interesting thanks Dee. I've been presecribed calcium tabs and they contain vit D (not sure how much, but probably isn't vast amounts). Maybe the fact it's been raining so much the past few weeks isn't helping with the vit D :P Anyways, I think you're all right about the exercise...I don't really do much at all, mainly cos I'm so tired and achey :rolleyes:

Thanks

Susie x

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This could certainly be fibromyalgia. It is a type of arthritis that is in your muscles and tendons rather than in your joints. I was diagnosed with it before I found out that I was gluten intolerant. I take a strong anti-inflammitory called Mobic daily, a lot of magnesium with malic acid and also calcium and a vitamin D pill. In spite of all of that when I am very tired and under stress, I have flare ups that make me hurt all over....as you have described, like a rotten flu without the other symptoms. Fibromyalgia is diagnosed by a rhumatologist after he has ruled out all the other kinds of arthritis like rhumatoid and osteoarthritis etc. They touch you on many pressure points and they say you have to have had it for three months before they will diagnose it for sure. I am in a flare situation right now and am kind of miserable. I also have migraine headaches that are flaring right now. Best wishes to you in digging through this problem. Barbara

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Guest nini

I was going to say that it sounds like fibromyalgia too. I am in the middle of a flare as well, I ache all over and am really dizzy. I take Ultram daily for the pain and Tylenol for the inflammation. My Dr. also gave me a TENS unit (electronic muscle stim) that really helps the most severe pain.

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Nini, Dee and Barbara - is there a connection between your fibromyalgia flare ups and the celiac disease or is it something separate? What I'm wondering is, whether what I'm experiencing is as a result of a glutening or something else entirely :huh:

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This happens on and off to me on a fairly regular basis. Every few weeks I'll feel really achey for a few days as if I've got flu, but nothing else happens.

This part of your post got my attention. Have you considered that this might be your body reacting to cyclical hormone changes? At certain times of my cycle, I am more prone to illness and muscle aches than other times. Try charting it for a few months to see if it is predictable.

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Guest nini

my flares seem to coincide with changes in the weather. Cold Fronts, Warm Fronts, Barometric pressure changes... Yesterday the temperature was beautiful, mid 70's during the day and high 50's at night. Today it was up in the mid to upper 80's and there is a thunderstorm watch... I am sure that is why my fibro has flared up today. I felt better after about an hour with the TENS unit and Ice Packs on my sore muscles, took my Ultram and some Tylenol...

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This part of your post got my attention. Have you considered that this might be your body reacting to cyclical hormone changes? At certain times of my cycle, I am more prone to illness and muscle aches than other times. Try charting it for a few months to see if it is predictable.

That's interesting as I am due on in the next few days. thanks for the suggestion!

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Nini, Dee and Barbara - is there a connection between your fibromyalgia flare ups and the celiac disease or is it something separate? What I'm wondering is, whether what I'm experiencing is as a result of a glutening or something else entirely :huh:

Hi Susie;

For me I believe the vitamin D deficiency was the most significant factor in my muscle & joint aches. Celiac disease causes the vitamin D deficiency, so if you continue to get gluttened, you will continue the cycle. I was amazed at how fast my body responded once I supplemented with 2000 IUD's of vitamin D (once you get your levels back to normal, cut back to 1000.) I have read alot of information indicating the deficiency is either the trigger or the cause of fibromyalgia. I also did alot of intensive massage thereapy (deep tissue), which was critical for me. My massage thereapist has been able to help alot of people with fibromyalgia. I know some people with it who don't want anyone to touch them because it causes too much pain, but I think it is the only way to get past the illness; I would take Advil before I went in to help lessen the pain. I would go in for 2 hour sessions every 2 weeks, which were literally torture, but they worked! The muscle knots which you develop by your body not getting the nutrients it needs from the celiac have been there quite a while and will not go away on their own, much like a rope once it is knotted; it always wants to go back where it was once tight. The good news is that you can get past the problems that the poison gluten has caused your body; but it takes alot of hard work & dedication. I have found walking & stretching to be the best exercise to help get rid of those nasty knots. Good Luck!

Dee

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my flares seem to coincide with changes in the weather. Cold Fronts, Warm Fronts, Barometric pressure changes... Yesterday the temperature was beautiful, mid 70's during the day and high 50's at night. Today it was up in the mid to upper 80's and there is a thunderstorm watch... I am sure that is why my fibro has flared up today. I felt better after about an hour with the TENS unit and Ice Packs on my sore muscles, took my Ultram and some Tylenol...

no way. . .I have been able to predict the weather since I can remember. I used to crawl into my mom's bed in the middle of the night and ask her to rub my foot/knee/leg. I was told it was growing pains. I've stopped growing and it keeps happening! On one hand it's nice since I know when to bring a jacket, it is also handy to know I am not such a nutcase! My one bone I broke never hurts in the weather like most people.

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I have the same issues that the rest of you are noting and the fatigue is overwhelming at times. I can’t seem to tell if taking extra calcium with D helps or not, but I do seem to feel better in the summer when it’s warmer. The joints in my hips are so sore sometimes it is hard to go to sleep so I've been taking a lot of Motrin. Now that the weather is better, it’s a lot easier to get outside and exercise; I keep telling myself that will help. Part of it too is that I am rapidly approaching menopause; starting it? With periods getting erratic after decades of timeliness, that is taking its toll on me physically. Wish there was a way around it. Any ideas?

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Does the Gluten Free diet help anyone with these symthoms? Are they less severe since starting the diet?

I was diagnosed with RA and spend 7 years on NASIDS, then they said it was fibromyalgia and more drugs, then migraines and more drugs, etc...

I went on the gluten-free diet last year for the migraines and everything cleared up after 4-6 months. Then when I was glutened 2 weeks ago, everything is back.

I thought it was the gluten causing the symptoms all along. But if you are still having symptoms after a gluten-free diet... I'm confused...

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A year after being diagnosed with celiac disease, I saw Dr. Robert Dahl in Golden CO. I had found his name on some celiac disease web site as being an “expert” on celiac disease. And he is! Anyway, after a few minutes of conversation, I mentioned I was fighting “tendonitis” in my wrists, which really didn’t seem to be tendonitis. He told me I had “rickets”, which is a Vitamin D deficiency. He said many patients he sees with celiac disease have a joint/tendon pain, and most have rickets. He suggested vitamin D. I told him that a week before I had been diagnosed with Osteopenia. He stated that was also common, and that I should take Calcium Citrate with Vitamin D. Within two weeks my “tendonitis” pain was 80% diminished. Within one month I could practice my guitar without repercussions.

I’d like to mention that most medical professionals don’t deal with malnutrition (especially in the Denver area), they deal with obesity. So it didn’t occur to the two hand specialists and the physical therapist I saw that I had a malnutrition disorder like rickets. I told all that I had celiac disease, but…

-Bob

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