Jump to content
  • 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

Pain In Muscles And Joints


Kasey'sMom

Recommended Posts

Kasey'sMom Enthusiast

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! :)


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

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. :blink: I don't have chronic pain now that I don't eat gluten. :)

GFNC Newbie

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 Enthusiast

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 Collaborator
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 Collaborator
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 Enthusiast

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! :blink:


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



Celiac.com Sponsor (A8-M):



skbird Contributor

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... :rolleyes:

Stephanie

Kasey'sMom Enthusiast

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 Contributor

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!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748

    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.