According to the case study published today, a man with celiac disease, alopecia, and rheumatoid arthritis was prescribed off label Tofacitinib to control the alopecia. He had always been less than strict on his gluten free diet and after starting the Tofacitinib returned to a gluten containing diet. Routine follow up for his celiac disease detected no mucosal damage in the small intestine. Wow! I’ve got some questions here…..

Rheumatoid Arthritis and Celiac disease

RA and celiac disease are not commonly known to travel in the same circles. By that I mean that the cluster of diseases commonly associated with celiac disease are Hashimoto’s Thyroiditis and Type 1 Diabetes because they have similar genetic roots. RA is considered an autoimmune disease, like Hashimoto’s and T1D. There is one study in the journals that links the microbiome to onset of RA. The rest of the articles seem to dance around a connection, but there is nothing solid there.

But it seems that on a chemical level the part of the immune system that is activated in celiac and RA seem to be the same. There are Interleukin-15 cells or IL-15 for short. IL-15 cells seem to be the central regulator in celiac disease. IL-15 cells appear in increased numbers in the gut mucosa of those with celiac disease. IL-15 cells are part of the increased fluid surrounding joints in RA patients.

Tofacitinib

Tofacitinib is the generic name for Xeljanz and Rinvoq among others- just so ya know.

Tofacitinib is used as an adjunct therapy for people with rheumatoid arthritis. It is typically not the first drug used, but is used in conjunction with other drugs to get the RA under control. That is typically how you hear it advertised.

Tofacitinib is also used for people with alopecia. Alopecia areata is considered an autoimmune disease where the immune system attacks hair follicles causing hair loss. There are lots of other types of alopecia, too.

Tofacitinib is also used to treat ulcerative colitis. Ulcerative colitis is an inflammatory bowel disease (IBD) that causes long-lasting inflammation and ulcers (sores) in your digestive tract.

As good as this drug may seem, there are side effects. Common side effects are headache, runny nose, shingles, increased risk of infections, common cold, and increased liver enzymes. There are heart attack risks in those over 50 and increased lymphoma risks. There are more and here is the link to the Xeljanz side effect list.

Tofacitinib and celiac

There are some studies that demonstrate that Tofacitinib has been effective at helping those with refractory celiac. Here is my editorial comment on studies only being conducted on those with refractory celiac – OMG, please. If 1% of the US population has celiac disease and half are diagnosed, that means about 1.5 million people have been diagnosed with celiac disease. Of those it is estimated that less than 1% of those have refractory celiac, leaving us with 15,000. FIFTEEN BLOODY THOUSAND. Come on – there are lots and lots of people suffering daily with celiac disease that don’t have refractory celiac disease. Ugh! Get it together guys!!!

Anyway, in 2012, there was a mouse study that looked at Tofacitinib and celiac disease mice. It seems the Tofacitinib produced complete remission in the refractory celiac disease mice.

In 2019, the United European Gastroenterology Journal published their guidance on care and management of celiac disease. They mention that tofacitinib might be effective at treating refractory celiac disease type 2.

In a 2015 article regarding new therapies in celiac disease, tofacitinib is not mentioned.

So maybe the idea of treating celiac disease with tofacitinib has been around for a while. Maybe when tofacitinib was discovered, celiac wasn’t a big deal. Because celiac didn’t really exist until the early 2000’s. (Just joking here.) Maybe, maybe, maybe.

In part 2, for tomorrow…

There is some indication that celiac disease can sometimes spontaneously resolve without any interventions, even without a gluten free diet. We will talk about what that is and what it means.

We will also talk about the millions of people with RA and I’m sure a few of them also have celiac disease. There should be more in the literature if this really was an option. Or at least more stories about it in the non-scientific world of social media.

Maybe this is the spark. Maybe it will help some. I dunno, but it is interesting to see something like this in the scientific literature. A drug already approved being used off label can sometimes be the spark to scientific discovery.

I am on vacation, but this was important enough to write about. I’m going to think about it and maybe do some more research while I sit on the beach!

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