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

Stiff And Achy Is This Just Part Of It?


GFreeMO

Recommended Posts

GFreeMO Proficient

My gosh here lately, I am so so stiff and achy. I feel like I have the flu but I am not sick. I went to the dr. for this and was tested for lupus, RA, MS, Thyroid came back ok and arthritis and the blood work all came back ok except for elevated liver enzymes that I assume will straighten out after some time on the diet.

I am so tired of being stiff and achy. Any ideas?


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



Celiac.com Sponsor (A8-M):



JNBunnie1 Community Regular

Massage?

kareng Grand Master

I have been feeling like that. I started taking a beginner yoga for people with physical challenges. And I have been exercising more and my joint pain and stiffness seems to be going away.

shadowicewolf Proficient

weather?

gatita Enthusiast

I had horrible joint pain along with my GI stuff when all this started last year. I am sooo happy to say that after 6 months gluten-free all the pain and stiffness are gone.

Maybe it's a matter of time??

NorthernElf Enthusiast

I hear you. I have run the whole gamut of tests like you as well - everything is 'normal' except for the fact that I hurt ! The rheumy said I likely just have tendonitis......in my hands, wrists, elbows....runners knees....why do my ankles & feet hurt ? Neck pain and stiffness ? He doesn't know. Fatigue ? Doesn't know.

Guess I will just wait & see if anything develops. Cold weather is definitely worse...and I make sure I get enough rest. Sometimes that's just sitting down with a coffee or tea and relaxing here & there. Sometimes bloodwork doesn't show some conditions right away or at all. It is very frustrating.

I am very carefully gluten-free so I don't relate it to gluten at all.....only so far as celiac being an autoimmune and a chance of other autoimmune things developing.

dreacakes Rookie

I had these issues too. Joint pain, stiff, achy, easily got tendinitis, even had muscle spasms and other issues. All other autoimmune disorders tested negative, and no swelling at the sites of the pain. They told me I had "fibromyalgia" and just tried to give me pain pills. I declined!

What healed me was going on a totally grain free Paleo diet, and cutting out nightshade plants as well. The pain is due to inflammation from leaky gut, which won't heal on a regular gluten-free diet, and also from nutrient deficiencies due to the gut damage.

I also take sub-lingual B12 supplements and fermented cod liver oil (a great source of vitamin D, low levels of this nutrient are linked to pain. This is the best brand: Open Original Shared Link) Make sure you're eating foods with cholesterol in them as well, as it is actually essential to proper vitamin D absorption.

This condition is super common, I actually saw a doctor in Berkeley who knew exactly what it was and how to treat it, he was the one who got me on this diet in the first place.

The diet is really limiting, but totally worth it, I promise. If you need more info feel free to message me. :)

If you have a Kindle or reader, this book is helpful too: Open Original Shared Link

I hope you feel better soon!


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



Celiac.com Sponsor (A8-M):



Pegleg84 Collaborator

I also get the achiness, definitely after being glutened (for a couple days at least), but often without any link to something I might have eaten. I usually think it's sitting around too long at work or at home, but then why are my arms all achy and tingly?

They are right now, actually, and I know I have not eaten anything that could have been ccd with gluten/dairy/soy in over a week, but it started after I had a banana earlier this morning. So I don't get it.

I haven't been tested for arthritis or anything like that (maybe should? it runs in my family, but gad! I hope I'm too young for that to kick in now!), but it could be my vitamin levels or that "mild gastritis" still hasn't healed. I don't know!

GFreeMO, do you feel kind of jittery/tingly/unsteady as well?

It could just be that it's the middle of the winter and that's bad enough (depending on where you live).

Hope you figure it out!

Good to hear the Paleo diet is working for you, Dreacakes. I'm kind of too chicken to try it out. Yet.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

    2. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    3. - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    4. - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

    5. - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,957
    • Most Online (within 30 mins)
      7,748

    konny heigle
    Newest Member
    konny heigle
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • 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.