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. - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    2. - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

    3. - Scott Adams replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fruits & Veggies

    4. - Scott Adams replied to yellowstone's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Cold/flu or gluten poisoning?

    5. - Scott Adams replied to hjayne19's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Screening

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

    • Total Members
      133,091
    • Most Online (within 30 mins)
      7,748

    Condon
    Newest Member
    Condon
    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

    • Aretaeus Cappadocia
      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
    • Scott Adams
      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a hypersensitive system. This ambiguity is a significant source of anxiety. The key differentiator often lies in the symptom pattern and accompanying signs: gluten reactions frequently include distinct digestive upset (bloating, diarrhea), neurological symptoms like "brain fog," or a specific rash (dermatitis herpetiformis), and they persist without the respiratory symptoms (runny nose, sore throat) typical of a cold. Tracking your symptoms meticulously after any exposure and during illnesses can help identify your personal patterns. Ultimately, your experience underscores the reality that for a sensitive body, any immune stressor—be it gluten or a virus—can trigger a severe and similar inflammatory cascade, making vigilant management of your diet all the more critical. Have you had a blood panel done for celiac disease? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is important for your lifelong medical record, can rule out other issues, and is often needed for family screening eligibility. The conflicting advice from your doctors creates understandable anxiety. The challenge, of course, is the "gluten challenge"—reintroducing gluten for 4-6 weeks to make the biopsy accurate. Since your symptoms resolved, this will likely make you feel unwell again. You must weigh the short-term hardship against the long-term certainty of a concrete diagnosis. A key discussion to have with your GI doctor is whether, given your clear serology and clinical response, would be getting a diagnosis without the biopsy.
×
×
  • 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.