Could the RA Medicine XelJanz let Celiacs Eat Gluten Again Intriguing New Research

[Posterboy]

To All,

I know Celiac.com will write an article explaining/reporting this new research soon.....I just wanted to get it out there to discuss for now until Scott can get an article published about it.

https://medicalxpress.com/news/2020-07-arthritis-drug-coeliac-patients-gluten.html

What do you think? Would you be involved in Clinical trials to test this medicine to treat your Celiac disease?

They do note "While these results are encouraging for patients with Celiac disease, the authors caution that potential side effects limit the use of tofacitinib aka XelJanz to refractory disease only."

I hope this is helpful but it is not medical advise.

Posterboy,

[trents]

"While these results are encouraging for patients with celiac disease, the authors caution that potential side effects limit the use of tofacitinib to refractory disease only."

1. The percentage of celiacs with refractory disease is probably pretty low.

2. I'm assuming that this med in some way, like all RA drugs I know of, is an immunosuppressant. That opens you up to other potentially lethal diseases like cancer.

So, i cannot see it as a potential solution for the celiac crowd in general.

[Gemini]

No thanks.  I already have a treatment and that is the gluten-free diet.  I am genetically programmed to not be able to eat wheat, barley or rye.  There are so many good foods to eat that replace them and I don’t miss the deadly three one bit.  I’ll choose diet modification every time over drugs with side effects.  

 

 

[cyclinglady]

One patient.  I would be interested if I had refractory celiac disease.  But thankfully, I have healed on a gluten free diet.  No drugs, no side effects.  

[Posterboy]

23 hours ago, Posterboy said:

What do you think? Would you be involved in Clinical trials to test this medicine to treat your Celiac disease?

15 hours ago, cyclinglady said:

One patient.  I would be interested if I had refractory celiac disease.  But thankfully, I have healed on a gluten free diet.  No drugs, no side effects.  

Cyclinglady and Trents,

This might of worked better as a Poll.....but I thought that would be better set up by a Moderator.

Cyclinglady I agree with everything said but my question was "Would YOU be involved in Clinical Trials to test this medicine to treat your Celiac Disease" or essentially be part of a trial to confirm these results where not flukes...

And that is not you particularly but anyone who reads this thread....

I am glad to see you read it at least....they wanted to be sure to notify Celiac's not to try this at  home is why they warned it (reasonably) that this should only be potentially used by refractory celiac's and why I quoted their cautionary note...

quoting from the article "Follow-up investigations unexpectedly showed complete histologic and serologic remission of celiac disease while he was still on a gluten-containing diet."

He was being treated already for another Immune disease....Alopecia

My thoughts are XelJanz could be a twofer…..if you have another Auto-immune condition….like Lupus or RA already….it could be a “Win-Win”….

I agree a larger study would be needed to recommend this treatment to anybody else from uncomplicated Celiac disease IE without other Auto Immune conditions.....but if like this fellow...someone already has another Immune condition it could also treat...

It might could be used for "Off" Label use or the best of "Both worlds"

I look forward to the Celiac.com article about it....and see how many people comment.

Maybe a poll could be started then!

This discussion reminds of this article about Potential drugs for Celiac's a few years ago by Jefferson Adams...

If this RA drug can truly work "Off" label for Celiac's it could be a game changer.

This would be a good thing indeed.....for those who are still struggling on a gluten free diet 2+ or even 5+ years later.

I hope this is helpful but it is not medical advise.

Posterboy,

 

[cyclinglady]

One patient.  I meant this article only involve one patient and one drug.  For all we know, this patient may have healed because of a miracle.  
 

I would not participate in a drug trial that involves drugs to treat my celiac disease when my gluten-free diet does the job.   While they could help, they can cause harm.  I understand that each person must weigh the benefits and harm.  Quality of life is important.  The wholesale cost (not retail)  in 2012 was 2,000 a month for this drug.  A steep price to consider when many can not afford gluten-free bread and other processed foods and many who do not have insurance or access to medical care.    I think that could be why this or other autoimmune drugs are not being used for celiacs who respond to the diet.  What insurance company wants to pay an exorbitant amount so that a person could consume gluten?  If I had Rheumatoid Arthritis and was crippled by it, I would consider the drug.    But I would also accept the risks which are cancer and blood clots.  Not so nice to risk with COVID 19 around.    Try googling the risks.  Here is some WIKI information:

https://en.wikipedia.org/wiki/Tofacitinib

 

Edited July 30, 2020 by cyclinglady

[Posterboy]

Cyclinglady,

Thank you for that wikipedia link....i admittedly haven't read up it (Xeljanz)....I know biologics do have exceedingly high risk....

I have a friend who's wive takes a biologic for her RA and he is rightly always worried about her getting sick from the common cold...

I knew the price was high $$$ but I didn't know it was quite that high....they do  have insurance though...

Other potential drugs being developed would have the same issues.....little interest in taking a medicine when a gluten free diet will do as well.

This might be a reason....some potential drugs for Celiac disease...have been slow to come to market...

Why there might be an "untapped" market for Celiac's.....what is the true interest if other Celiac's are not willing to participate in trials to bring it to market?

Why take a medicine with other potentially harmful side effects when a gluten free diet will do as well?

I always appreciate your clear insight!

Posterboy,

[cyclinglady]

There were plenty of celiacs who did participate in some of the trials for medications to treat celiac disease.  They were willing to get sick in order to find a drug treatment or cure.  I commend them. 

I think most Celiacs  just miss the ability to easily eat out and share meals with family and friends.  Celiac disease is the only illness where the patient must treat themselves.  That can be mentally draining.