PMR and Celiac Disease

Wow! Is it ever an eye opener for me read your story. It's also a good reason to turn your anger into your passion for advocating and learning more about the condition and what we each can do to help each other. My first 60 years were spent with not much concern about what I was eating other than did it taste good. My PMR is in remission but I have had two different flare ups with a six year remission and am now in another 6+ year remission. I also have idiopathic small fiber peripheral neuropathy and noticed that peripheral neuropathy is one of the common symptoms in adult Celiac disease - https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/. I've never tried gluten free eating but I have made a lot of changes the past few years to clean up my act and eat healthier.

I thought it might be helpful for others to share the following references to learn more the topic.
"Some people with celiac disease have no symptoms at all, but still test positive on the celiac disease blood test. Others may have a negative blood test, but have a positive intestinal biopsy. However, all people with celiac disease are at risk for long-term complications, whether or not they display any symptoms."
-- Symptoms of Celiac Disease: https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/
-- What Means When You have Silent Celiac Disease?: https://www.verywellhealth.com/asymptomatic-or-silent-celiac-disease-563125

Did your doctor suggest starting on a gluten free diet to go along with your PMR treatment?

I don't know if I was ever misdiagnosed but I think I can relate to how you feel. My first symptoms began more than 30 years ago. Those symptoms were called inflammatory arthritis at the time and prednisone became a big part of life ever since. All the pain from painful flares of something would only temporary go away when I took prednisone. Prednisone never solved the problem but I was never sure what the problem was to begin with. I don't know if a problem can be solved until the problem is correctly identified.

My rheumatologist never seemed to be able to decide on any diagnosis. At first PMR seemed to be the catch-all for everything. Later on, my rheumatologist came up with various phrases that more or less summed things up. "Chronic systemic inflammation" seemed to sum it up the best. As far as a specific diagnosis she would tell me I had a "full range of things." In any case prednisone never seem to solve anything. There wasn't a single solution because according to my rheumatiologist it was "impossible to adequately treat everything."

I don't know if there is a single thing I could change if I could start over. I don't know why it took so long to get to where I am today. I'm off prednisone and have discontinued almost all other medications. I get a monthly infusion of a biologic which does a nice job of controlling everything. My biggest regret stems from why it had to take so long!

My other regret stems from adrenal insufficiency caused by chronic prednisone use which seems to explain many things.

I was just recently diagnosed with PMR after a huge flare in September. In retrospect, it had been brewing in me for several months. I have been gluten free for 20 or so years due to allergic reactions to gluten. Wondering about the connection!

I told both my GP and Rheumatologist that I had long term problems with my gut and sensitivity to medications but it was never suggested that I do the blood test or start a GF diet. When I asked my GP for the blood test he was reluctant and said he had never requested it before (he is a very experienced and competent Doctor). My Rheumatologist completely dismissed diet as being helpful and has continued to pressure me to take Methotrexate or Leflunomide.

It may be difficult for you to get a clear answer on whether or not you have Celiac. The blood test requires you to be eating the equivalent of 4 slices of gluten bread a day for at least 8 weeks before the test. If you are on immunosuppressive medication this can give a false negative on the test as well.
However the test for the gene HLA-DQ2 and HLA-DQ8 can tell you if you have the gene and if it is active. In Australia this test is partially funded under Medicare. The gold standard for diagnosis is gastroscopic biopsy of the small intestine but this can also yield inconclusive results if you have been on a GF diet for a while.

Embracing a true gluten free lifestyle is not for the faint hearted but the devastation that Celiac can cause in your body can't be understated. Because I have the added damage of PMR that is not well controlled on medications, I need to consider ridding myself of all grain products. Most Celiacs can eat a variety of other grains that have gluten like proteins but don't cause inflammation of the gut but given the severity of my PMR, I'm going to need to take the added step of eliminating all grains and possibly dairy. Finding out if you have Celiac disease is crucial in the decision making process to take control of your health. The disease is inherited so if one family member has it, there are several others who have it and may not be aware of the damage they are doing to their body.

There is another genetic test called HLA-B27 for people with problems with digestion. A positive result is indicative of enteropathic arthritis which can mimic symptoms of PMR. However, symptoms usually start to occur at a younger age compared to PMR.
https://my.clevelandclinic.org/health/diseases/23166-enteropathic-arthritis
PMR should only be diagnosed after excluding everything else. The problem is that people can still have PMR in addition to everything else.