Jump to content

  • 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

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

Posterboy
 Share

Recommended Posts

Posterboy Mentor
Posterboy
Posted

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,

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

"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 Experienced
Gemini
Posted

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 Grand Master
cyclinglady
Posted

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 Mentor
Posterboy
Posted
  • Author
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 Grand Master
cyclinglady
Posted
(edited)

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 by cyclinglady
Posterboy Mentor
Posterboy
Posted
  • Author

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,

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

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.  

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    2. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    3. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    4. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
    5. cristiana
      - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott. Have manufacturers ever said why that should be the case?
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,437
    • Most Online (within 30 mins)
      7,748
    rednecksurfer
    Newest Member
    rednecksurfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By cristiana · Posted

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.