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

Back Pain Associated With Celiac?


Giwi777

Recommended Posts

Giwi777 Newbie

Hi all! I am new to this forum, and two weeks fresh from my celiac diagnosis. The only symptom I can recall prior to my diagnosis was the past three months of extreme fatigue and my stomach would swell larger than a 10 month pregnant woman with twins if I ate oatmeal. I took naps right after work everyday which was far from my normal bubble of energy I was prior. One thing I have learned in my reading and research about my new diagnosis is that there are MANY symptoms of celiac, one including back pain. I have been significantly overweight And even with exercise and what I thought was a proper diet, I couldn't lose a pound. With that said, I realize a lot of my back pain could be all of this excess weight, but the pain scares me and I am curious if anyone else has experienced back pain? The pain I experience is all throughout my back, upper, lower and middle. Could this be part of the celiac? Any opinions and stories will be greatly appreciated!


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



Celiac.com Sponsor (A8-M):



moosemalibu Collaborator

I am thinking that the inflammation in the gut alone could probably cause pain that could be interpreted as back pain. I have had back pain for a lot of my life - the only thing that helps is working out my back specifically with weights. My weight lifting and celiac diagnosis kinda coincided around the same time so its possible there was some overlap. Hopefully with your gluten free diet now things will improve for you (and yes - some experience weight loss after diagnosis and going on a gluten free diet... some however do gain weight. I was one that lost weight)

ravenwoodglass Mentor

I had pretty severe back pain pre-diagnosis but then I had severe pain pretty much everywhere. I am now for the most part pain free, unless I get glutened.

Do be sure to drop dairy for a bit as many of us have problems with that until we heal. That may help with some of the bloating. You can reintroduce it after you have healed for a bit.

Celiac does cause inflammation so hopefully your discomfort will ease a bit as you heal. Be sure to read the Newbie 101 thread at the top of the Coping section as it has a lot of good info on what we need to do to be truly safe.

Welcome to the board and I hope you heal quickly.

etbtbfs Rookie

The first symptom of celiac I got was backpain that put me in chiropractor-land for years. After 24 years of this, I got a diagnosis of degeneration at L5-S1 and herniation at L4-L5. Celiac causes deficiencies that cause this. In my case, the key deficiencies were hypothyroid (via Hashimotos) and hypoprotein. After going gluten-free, got pain relief by fixing thyroid (T3+T4) and protein (free essential amino acids blend). Use many other supplements too for insurance.

captaincrab55 Collaborator

Giwi777,      When was the last time your Vitamin D was checked??      I had many pain issues when mine was very low.    

Giwi777 Newbie

Thank you for everyone's replies! I have not yet had my vitamin D checked, however, I will ask the doctor to order that in some lab work as well. I do know my iron is very low, first indication of celiac to the doctor prior to doing the scope. I do hope I lose weight after being gluten free for a while although I do not expect it to fall off all on its own. What started this entire journey was what my ob /gyn thought may have been kidney stones, followed by a CT scan thay indicated no stones but enlarged lymphnodes in my abdomen. Is it safe to assume that the enlarged lymphnodes could be from the Celiac? I worry a lot and I'm fairly afraid, who am I kidding, I am very scared of the unknown and worst cases.

I will also check out the newbie section on here to learn more and hopefully try to remove dairy while I am healing as well.

I am always open to suggestions, opinions, brutal honesty, etc.

Thank you again for your help all!

squirmingitch Veteran

I had severe back pain in all 3 sections of my back. I had back pain since I was early teens which in hindsight I now know I was celiac that far back (58 now). I no longer have any back pain at all. None. I had pain all over my body - screaming, burning, raw, massive pain. It's all gone now.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

In relation to the lymph nodes I can only answer with my own experience. I had enlarged nodes in both my neck and groin prediagnosis. Doctors never really investigated the cause, I think because I had such severe DH they attributed the enlarged nodes to the lesions. It took a long time for the nodes to go down but they eventually did.

As far as dairy goes it would be a really, really good idea to eliminate it for a bit. I also found it helpful to eliminate soy and after adding soy back in discovered that it would cause a great deal of joint pain. You may want to eliminate at least soy protein also for a while. Once you are feeling better add them back in one at a time and watch for any reactions. When you add dairy back in start with lactose free dairy like hard cheeses and yogurt and if you are okay with those then go ahead and add back in softer cheeses and milk. Some of us can react to the protein, casien, in milk even after we have healed enough to digest lactose. I used ghee for a bit when dairy free but found I did tolerate butter which is low in both casien and lactose. For myself after I had healed well I found I could even eat ice cream with no issues which was something I had avoided for years and years.

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

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

    2. - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      324

      Terrible Neurological Symptoms

    3. - Scott Adams replied to elisejunker44's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Schar's products contain wheat!

    4. - Scott Adams replied to Jmartes71's topic in Doctors
      5

      Second chance

    5. - Florence Lillian replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

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

    • Total Members
      133,613
    • Most Online (within 30 mins)
      7,748

    Lorna A
    Newest Member
    Lorna A
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Hi Florence, thank you for clarifying — and no worries at all about late-night writing. I appreciate you explaining that you’re specifically asking about gluten cross-reactivity, particularly the proposed immune cross-reaction between alpha-gliadin and certain non-gluten foods on a gluten-free diet. It’s an interesting and often confusing topic. The Vojdani & Tarash paper you mentioned did report antibody cross-reactivity in laboratory settings, which has led to a lot of discussion in the gluten-free community. However, it’s important to note that in-vitro antibody reactions (in a lab dish) don’t always translate into clinically meaningful reactions inside the human body. At this point, major celiac research centers generally conclude that true immune cross-reactivity to non-gluten foods in people with celiac disease hasn’t been clearly demonstrated in well-controlled human studies. That said, many individuals do report symptoms with foods like corn, dairy, oats, or others, and those reactions can absolutely be real — they just may involve different mechanisms, such as food intolerance, FODMAP sensitivity, separate immune responses, or individual gut permeability differences rather than molecular mimicry of gliadin specifically. If certain foods consistently trigger symptoms for you, keeping a structured food and symptom log and discussing it with a knowledgeable gastroenterologist or dietitian may help clarify patterns. It’s a nuanced area, and your question is thoughtful — we just have to separate what’s biologically plausible in theory from what’s been conclusively demonstrated in patients.
    • Scott Adams
      I’m really sorry you’re dealing with such intense burning pain right now. When symptoms get that overwhelming, it can feel unbearable and even trigger really dark thoughts, and that’s a sign of just how much you’ve been carrying — not a sign of weakness. It makes sense that you’d want to go back to a lower-carb, meat-and-vegetable approach if that’s helped reduce symptoms before; sometimes dialing things back to simple, whole foods can calm inflammation or gut irritation. At the same time, your safety and mental health matter just as much as the physical symptoms. If the suicidal thoughts are feeling strong or hard to control, please consider reaching out for immediate support — in the U.S., you can call or text 988 for the Suicide & Crisis Lifeline, or go to the nearest emergency room if you feel at risk. You don’t have to handle this alone. It may also be worth checking in with your doctor soon to review what’s changed and see if there are adjustments or treatments that could ease the burning pain more effectively. You deserve relief, and you deserve support while you figure this out.
    • Scott Adams
      By the way, a few years back Nestle launched gluten-free DiGiorno pizza which also used Codex quality wheat starch, but due to backlash from the celiac community quickly reformulated and it is now wheat-free. Personally I think it's not a good direction to go, considering the many alternatives available now.
    • Scott Adams
      I just want to mention that a colonoscopy would not be the test for celiac disease damage, was it an endoscopy? It is not unusual to do either or both tests as a long-term follow up, especially if you're having issues. I fully understand you not wanting to go through a gluten challenge, and would be curious why they would request that part of your follow up--perhaps they questioned your original diagnosis?
    • Florence Lillian
      Hi  Scott  Thank you for the feed-back. I fear I did not correctly state what I was 'attempting' to convey. So much for writing at 11:30 at night.  To be specific, I was concerned about Gluten Cross-Reactivity e.g. Cross- Reactivity between a-gliadin and non-gluten foods consumed on a GFDiet. The following comprises my reading so far on this subject:  (If you cannot find these let me know and I can send them to you via email.) "Good for You Gluten Free" article Titled "Understanding Gluten Cross- Reactivity & Gluten Cross- Reactive Food.  Their reference is "Food and Nutrition Science Vol 4#1 (2013).  Further, a scientific paper written by:  Aristo Vojdani & Aristo Tarash titled "Cross-Reactions between Gliadin and Different Food & Tissue Antigens". A very interesting paper.  As several of the non-gluten foods affect me, as I mentioned in my letter, I am wondering if it could be connected to this topic. I would be interested in your thoughts on this. The paper by the gentlemen listed above is particularly interesting.       All the best, Florence       
×
×
  • 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.