Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Shoulder/neck/nerve/tendon Pain


tbritt

Recommended Posts

tbritt Rookie

I have been reading this message board for a little more than a week. I suspect that I have celiac and was just screened in a blood test by my new rheumatologist.

I have been suffering from strange illness that have come and gone all my life:

Age 7 - Anemia

Age 12 - Dizzy Spells

Age 13 - Seizures

Age 16 - Psoriasis/Eczema so bad it would crack and bleed

Age 17 - Low blood sugar

Age 18 - Acid Reflux/Ulcers/Vomiting

Age 20 - Low Thyroid

Age 21 - Epilepsy

Age 23 - Migraines

Age 25 - Good health but feeling tired all the time

Age 30 - Nausea, general malaise, shoulder and neck pain so bad after a viral infection that I can't even cope with it.

I have been in and out of the doctor this year for shoulder pain. I keep telling them I have a nausea all the time, but they won't listen. Because I am a violinist, they kept telling me that I just overdid it. The physical therapy doesn't seem to help. My body keeps telling me it's something more. They told me I had mono. I still think it's something more.

I have started the gluten free diet and my neck no longer feels as though something is attacking me. Swelling in my arm and shoulder have gone down to almost manageable.

If you have hope or insight, please share it with me. Basically, I am needing someone to tell me I can get better. I have so much hope that the solution could be in sight. How long might it take to get better? Has anyone else had shoulder and neck pain that eventually cleared. Do you think I might be better in a year? Six months? I am hoping that I will stop hurting so I can have my life back. (If I am a celiac at all.)


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



Celiac.com Sponsor (A8-M):



Looking for answers Contributor

Hi,

I was also try cutting out other inflammatory foods such as soy, dairy and limited sugar intake until you begin to feel better. Are you taking a good multi vitamin? Low levels of some minerals and vitamins (such as B vitamins) can lead to this kind of pain. I take a liquid multi (isotonix) that has helped greatly. I also suffered from siatic pain in my 20's that is completely gone now.

tbritt Rookie

The other weird thing about my condition of shoulder pain is that it has responded positively to an antibiotic (more than once). Sounds strange, but basically, I feel better (70 percent) when I took this antibiotic, but it gets worse again when I go off of it. THERE IS ABSOLUTELY NO EVIDENCE THAT I HAVE AN INFECTION, THE DOCTOR JUST TRIED THE ANTIBIOTIC BECAUSE HE COULDN'T THINK OF ANYTHING ELSE.

Both times, the arm would swell when I would go off the antibiotic. But now that I'm off gluten, the swelling is not as much. Has anyone had experience of antibiotics being used as an anti-inflammatory for pain and swelling in your joints?

  • 2 months later...
schwzgrp Newbie

tbritt:

I read your posts regarding your symptoms and pain in shoulder and neck. I think you are on the right track of going gluten-free. I suggest a really good Dr that is well versed in gluten-free issues, as there are ALWAYS underlying issues with gluten intolerance that need to be addressed at the same time. I have had all the symptoms you describe above and many more for 45 years. I'm day 31 of gluten-free. My arm/shoulder/neck pain started dissappearing slowly and continues to dissappear. I'm also on lots of supplements which are helping address my other problems as well. It can be a slow process and it has to be a faithful project or you won't get better. Do your homework, and educate yourself.

This forum and this website are handy tools and certainly great re-enforcement. Hang in there and good luck.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,160
    • Most Online (within 30 mins)
      7,748

    Elaine Gilbert
    Newest Member
    Elaine Gilbert
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      @cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her fluid intake. It’s also reassuring that she hasn’t shown noticeable symptoms from accidental gluten exposure, though it’s understandable how challenging it can be to monitor for such incidents. The unexplained high lipase levels are intriguing—perhaps further investigation or consultation with a specialist could provide more clarity. Wishing you both continued strength and success in managing her health. Please keep us updated on her progress!
    • Kj44
      Hello I received this in a genetic lab test I requested from my provider.    The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease.   Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above.    I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 
    • cvz
      My daughter, age 48, has Down syndrome, hypothyroidism, Addison's disease, and Celiac disease, which was diagnosed based on blood tests last July.  After a small intestine biopsy last fall, we were told that she has severe celiac disease.  She is taking both levothyroxine and leothyronine for her hypothyroidism and both hydrocortisone and fludrocortisone for Addison's disease.  She also takes Folic acid, magnesium, vitamin B-12, DHEA (DAGA), and a multivitamin.  In July, she started on a gluten-free diet and is very compliant.  She has had constipation and diarrhea issues all her life and now controls the constipation with Miralax, prunes, and apricots.  Shel has only very occasional syncopes or vasovagal events and muscle aches in her upper back and neck.  She drinks 4-6 or more 12 oz bottles or of liquid per day.  Her doctor has just suggested adding electrolytes to one of those bottles daily.   We are sorry to learn about the issues you are having and would like to stay in touch.  We do not know anyone else with both Addison's disease and celiac disease.  So far, she has no recognizable symptoms.  We are doing our best to keep her gluten-free, but have no way of knowing if she has had an exposure to it unless we catch it ourselves.  For example, a few weeks ago, a restaurant mistakenly breaded her fish, and I did not notice it until she had eaten most of it.  She had no identifiable symptoms of the exposure then or days later. By the way, the reason she was screened for Celiac disease was that her blood lipase levels were unexplainably high.  They still are.  We have no idea why.    
×
×
  • Create New...