Pain In Muscles And Joints

[Kasey'sMom]

Hi,

My dd was diagnosised with celiac disease about 6 months ago and I was diagnosised a couple of days ago. I've had digestive problems since I can remember but about a year and a half ago I started having pain. I can make a connection between the pain in my muscles and joints with I eat gluten. I also have had back pain as well. Last summer I saw a chriop., 2 neruologists and a rheumy. that couldn't explain my pain. Now, I really think it is coming from eating gluten.

I've read several posts where others have had some of the same symptoms. I was wondering after being gluten-free for awhile, if the pain gets better and goes away?

This may be a silly question but....I had a positive ttg and EMA blood test. Can celiac disease also damage muscle tissue other than the intestines and digestive system?

Thanks for the info!

[Rachel--24]

I think it could damage other tissue...it would make sense but I don't know for sure.

I had severe muscle/joint pain for over 2 years...it just kept getting worse. None of the specialists could find anything wrong. I never went to the GI cuz I hardly had any gi symptoms...they paled in comparison to the pain in the rest of my body. My HMO put me in a special chronic pain class for people who just have to learn to live with chronic pain. They sent me to physical therapy and were going to send me to an acupuncturist as well. I was taking strong pain meds everyday for a year. When I tried the candida diet 95% of my pain was gone after a week.

I wasn't eating any gluten on that diet. I havent taken any pain meds since I stopped eating gluten. I only learned last month that the real problem was gluten and not candida but anyways that diet really saved me from alot of pain and severe depression. The doctors couldn't figure out how I could just stop taking such a strong pain pill cold turkey...they thought I had to be addicted after taking it for a year. I guess I probably didn't get addicted cuz my body wasnt absorbing any of it. I don't have chronic pain now that I don't eat gluten.

[GFNC]

I am newly diagnosed with celiac disease; however my symptoms have been going on for approximately six months. I never had back pain until the stomach and intestinal Celiac symptoms started. When those symptoms started, I suddenly started having terrible back pain. All of the doctors dismissed my back pain, but it has been excruciating. It feels like it is an 'inside out' pain, not a pain like a pulled something or did something my moving wrong. I'm hoping it will go away as I am gluten free longer.

[Kasey'sMom]

Thanks so much for the information and sharing your stories with me. I've had so many different symptoms of celiac disease over the last few years and I didn't even know it. I remember being puzzled and frustrated that my Dr.'s didn't want to look at the whole picture. Every Dr. I saw wanted to treat a specific symptom. I really pushed my dd Dr. to test her for celiac disease and I'm so thankful I did the same thing with my Dr. last week. When I went in to request the tests, I mentioned that I had my first GI series at 12 years old. She responded by saying, " Dr.'s just don't think about celiac disease." I think she's only tested one other person. Hopefully this will bring more awarness to her practice.

I wasn't able to take pain meds. for long periods of time because of digestive side effects. Rachel, I'm so glad you were able to stop taking the med's without withdrawl. I did end up trying steroid inj., TENS unit and therapy. Nothing seemed to really help my back. Just like all the reflux and spasm med.'s I took for my digestive issues.

Rachel, I had to have my husband read your post! I met a holistic nurse in Dec. who told me that my symptoms were from candida. I went on the candida diet and I had so much energy. I actually felt like working and cooking! I thought it was getting rid of the candida that made the difference. I remember saying to myself, I really never felt so good. I started cheating on the candida diet and I ate gluten & dariy a couple of times a week. I noticed those days I would get very sick and it would take several days to recover. I decided that I would go and get tested since I was consuming some gluten.

My dd only tested positive for anti-gliadin antibodies. We put her on a gluten-free diet right after we found out about her blood work. I feel blessed to finally know what's up and it confirms our decision about putting our dd on a gluten-free diet as well.

Take Care

[Claire]

Hi,

My dd was diagnosised with celiac disease about 6 months ago and I was diagnosised a couple of days ago. I've had digestive problems since I can remember but about a year and a half ago I started having pain. I can make a connection between the pain in my muscles and joints with I eat gluten. I also have had back pain as well. Last summer I saw a chriop., 2 neruologists and a rheumy. that couldn't explain my pain. Now, I really think it is coming from eating gluten.

I've read several posts where others have had some of the same symptoms. I was wondering after being gluten-free for awhile, if the pain gets better and goes away?

This may be a silly question but....I had a positive ttg and EMA blood test. Can celiac disease also damage muscle tissue other than the intestines and digestive system?

Thanks for the info!

<{POST_SNAPBACK}>

Many celiacs develop autoimmune diseases such as fibromyalgia and Chronic Fatigue. The muscle pain could be cause by fibromyalgiA - it is a common symptom. Also celiac disease does have many neurological implications including peripheral neuropathy - muscle pains. Claire

[Rachel--24]

Rachel, I had to have my husband read your post! I met a holistic nurse in Dec. who told me that my symptoms were from candida. I went on the candida diet and I had so much energy. I actually felt like working and cooking! I thought it was getting rid of the candida that made the difference. I remember saying to myself, I really never felt so good. I started cheating on the candida diet and I ate gluten & dariy a couple of times a week. I noticed those days I would get very sick and it would take several days to recover. I decided that I would go and get tested since I was consuming some gluten.

<{POST_SNAPBACK}>

You're story sounds very similar to mine. I saw an alternative doctor for the candida as well. I really was covinced thats what it was since I felt so great starting the diet. You're lucky you were still able to be tested. I was faithful on the Candida diet and never cheated a single time in 4 months..I don't know how I did it...no carbs or sugar at all...but somehow I stuck with it. I started taking all the various supplements and because they had gluten I started getting sick again. I had been off gluten too long to get tested so I had to do Enterolab instead. Luckily I was still able to come back positive.

[nikki-uk]

I think alot of people discovered the source of their problems(gluten)through either 'the candida diet' or 'the Atkin's diet'.

There would probably be even more coeliacs/gluten intolerants out there if it weren't for these diets!

[skbird]

I have been having puzzling pain myself lately, in my shoulder and today I woke and my neck hurts, too. It's like I was at a concert and did a little too much rocking out or landed in the pit or something. But I didn't do anything like that all weekend. I went to my favorite nurse practitioner this weekend at the walk in clinic and we caught up on all the weird health stuff I've been going through this summer and he thinks I might have fibro. I didn't think that would be the case because while all the trigger points discussed with fibro are tender on me always, they aren't unreasonably so, or to the extent I've heard they are for fibro patients. But he said that doesn't have to be the case.

I have been feeling really weird the last week - if I'd been bit by any mosquitos recently I'd be wondering about West Nile or something like that. I have been sleeping oddly and every time I wake up my mouth is very dry, I have been having aches in my shoulders and now my neck, and feeling like I'm in a haze.

Sometimes I wonder if I will ever be "normal" again, or if I just need to make the best of things as they are now...

Stephanie

[Kasey'sMom]

I had a neurologist who tested me for West Nile. I think the symptoms of the virus can mimic neurological diseases. You might want to see if your Dr. could run the blood test just to make sure. In the early stages of West Nile, I think it responds really well to high power anti-biotics.

Last summer I discussed Fibro with my Dr. when we were trying to figure out my pain as well. I think their is still so much to learn about Fibro and those of us with auto-immune disorders. I had several nerve tests done to make sure that their weren't any damaged areas but it came out fine. I did test low, positive for ANA and RA Factor. A couple of months after I eliminated the gluten (yes, before I cheated on my candida diet) I was re-tested and my ANA and RA Factor became negative. My Dr. said a few days ago that she wonders if their is a connection between these test and Celiac.

I can't see your profile as I'm typing this message.....but how long have you been gluten-free? I hope you feel better soon!

[skbird]

Thanks, Kasey's mom - I do too. I'm not used to neck pain. However, when I eat things I'm sensitive to, it seems I get neck pain now. Last night I made banana bread with garbanzo bean flour mix and that might have been a problem for me - I'd cut out garbanzo beans about 3 years ago after reading the Eat Right 4 Your Blood Type diet, and thinking about how my mouth feels after eating them. So that might have done this to me, we'll see if it goes away and I can repeat it later.

I have been gluten free for 11 months now! Wow! Big anniversary next month. I, too, have a positive ANA, it was 1:320 when it was tested in June, then went to 1:160 at the end of July. It was the only thing, other than a slightly low C3 that my rheumy noticed as off. I am about to be looked at for endometriosis - I do think that will come back positive. There is about double the change of having fibro if you have endo, than if you don't. Also, ANA is often positive in both these conditions. The thing that puzzles me the most is how many issues I'm having with my really strict gluten free diet. Might be that I would be that much worse and I know that going gluten free doesn't make endo and fibro go away, but evidence supports that it can lessen these conditions.

At least I'm not really looking at lupus anymore as I was earlier this summer. Endo and fibro are not fun, from what I've read and from what I'm experiencing (presuming...) but at least they are not likely to be fatal.

Stephanie

PS my walk-in clinic doc also wants me to get tested for lyme disease at this point. God, what shouldn't I get tested for??? And while I was in the waiting room, I heard someone call in for test results and THEY had West Nile... yuck!