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!
Not sure if I understand your comment about “FIFTEEN BLOODY THOUSAND” people with refractory celiac and to “get it together guys!!!” Are you saying that’s not enough people to be concerned about? And your number is off…it’s about 3 million people who have celiac, not 1 million. I almost died in 2018 from refractory celiac disease and was hospitalized for 11 days. I was diagnosed with refractory type II and although I have undergone 3 different attempts at treating the RCD, including chemotherapy, It hasn’t helped. So, whatever trials for treatments the medical field is undergoing to learn more about celiac and RCD is only helping ALL of us who have celiac, whether it’s RCD or not. People with RCD run a very high risk of developing EATL, a rare, terrible and often fatal lymphoma. As a new mom, that’s the last thing I want to experience. The gluten free diet works for most people, so for those who is doesn’t to work for…I say find something that will help prevent them from DYING of lymphoma. Maybe I have your comment misconstrued, and if so, I apologize. If I don’t, then it’s a little insensitive and not sure what your point is.
I completely understand. My issue is that there are already few enough people with celiac willing to undergo clinical trials that restricting it even further by limiting trials to only those with RCD makes it even harder. Also a drug that works for those with RCD may not be approved for those with just plain celiac and vice versa.
I completely understand your worry and frustration.
I’m excited to say that I just started Xeljanz for my RA last Thursday. I had read a glossed over article about it helping one celiac patient also, and it peaked my interest because I also have celiacs disease. I have been completely gluten free (with only a handful of accidents) for 6 years.
I just remembered to look further into what I had read and came across your article. It’ll be interesting to see if it helps me with my celiacs disease. It’d be nice wouldn’t it? I don’t know if I have refractory type celiacs or not though. I actually have an appt tomorrow with my Endocrinologist doctor who treats me for my Hashimoto’s and Celiacs disease. I’m going to bring this up to him and see if I need to do some extra bloodwork to keep an eye on things if I decide to try a diet including gluten again, if he advises it to be ok, of course.
He did not advise me to try it, but I think I’ll give it a go, a month after I have taken my first dose. My celiacs causes such an adverse reaction I’ll know right away if my body is still reacting to the glutens I think. Ha. I guess I’m going to try my own experiment. I’ll try to remember to update this comment for anyone that’s interested, with my results.