Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,720
    • Most Online (within 30 mins)
      7,748
    GranGran
    Newest Member
    GranGran
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Julie Max
      Safe and Forbidden lists

      By Julie Max · Posted

      As far as I know, miso paste is gluten-free and should be added to the Safe List.  And, shouldn't soy sauce be on the Forbidden list?
    • knitty kitty
      Test says no, but body says Yes?

      By knitty kitty · Posted

      @PlanetJanet, Sorry to hear about your back pain.  I have three crushed vertebrae myself.  I found that a combination of Thiamine, Cobalamin and Pyridoxine (all water soluble B vitamins) work effectively for my back pain.  This combination really works without the side effects of prescription and over-the-counter pain meds.  I hope you will give them a try. Here are articles on these vitamins and pain relief... Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ And... Role of B vitamins, thiamine, pyridoxine, and cyanocobalamin in back pain and other musculoskeletal conditions: a narrative review https://pubmed.ncbi.nlm.nih.gov/33865694/
    • Scott Adams
      Canned tomato sauce, ricotta?

      By Scott Adams · Posted

      Here is the info from their website. If you don't trust them, you may find products that are labelled "gluten-free," but I don't see any reason to believe there is any gluten in them. Hunt's Tomato Paste: https://www.hunts.com/tomato-sauce-paste/tomato-paste   Hunt's Tomato Sauce: https://www.hunts.com/tomato-sauce-and-paste/tomato-sauce  
    • PlanetJanet
      Test says no, but body says Yes?

      By PlanetJanet · Posted

      Hi, trents, Thanks for responding! One book I read is called, Doing Harm, by Maya Dusenbery.  She has wonderful perspective and insight, and it's all research-based.  It's about how women can't get treated.  Everyone should read this!  I wouldn't mind reading it again, even.  She believes that women are so busy taking care of families, working, etc., that we are more likely to ignore our pain and symptoms for longer.  Men have women bugging them to go to the doctor.  Women don't have anyone telling us that.  We don't have time to go.  Providers think we are over-emotional, histrionic, depressed, have low tolerance to pain...Men get prescribed opioids for the same symptoms women are prescribed anti-depressants.  My car crash in January 2020 made going to the doctor a full-time job.  I grew up with 2 rough and tumble brothers, played outside, climbed trees.  I was tough and strong, pain didn't bother me, I knew it would heal.  But do you think I could get treated for back pain--as a woman?  I am so familiar now with the brush-offs, the blank looks, the, "Take your Ibuprofen," the insinuation that I am just over-reacting, trying to get attention, or even, "Drug Seeking."  Took almost 2 years, but what was happening was Degenerative Sacroiliitis.  I couldn't walk right, my gait was off, effected my entire spine because gait was off.  I had braced myself with my legs in a front-impact, slightly head-on crash with someone who made a left turn in front of me from the opposite direction.  I finally had SI Joint Fusion surgery, both sides.  It's not a cure. I have given up on trying to get properly treated.  There is so much pain with these spine issues caused by bad gait:  scoliosis, lithesis, arthropathy, bulged disc, Tarlov cysts.  And I can't take anything because of my bad tummy. Not that I would ever hurt anyone, but I can relate to Luis Mangione who couldn't get treated for his back injury. I feel so alone.
    • PlanetJanet
      Modified Food Starch

      By PlanetJanet · Posted

      They say maltodextrin is gluten-free, even if it's made from wheat, because the gluten is processed away.  It makes no difference to my body.  I still get uncontrollable flatulence and leakage.  Happens every time, even if I refuse to believe it will happen.  Once I was taking Gas-X chewables to hang around with people I was visiting and staying with, to make sure I would feel safer and more comfortable.  WRONG.  I forgot to read the label. I didn't realize it till after I left and went home--MALTODEXTRIN.  I was miserable the whole time. The second gastroenterologist I saw made the tentative diagnosis of microscopic colitis.  Usually occurs in women over 60, I was 59, had been in a crash, (2020) was taking alot of NSAIDS, muscle relaxants.  Had constant diarrhea, gas, leaking.  Unbearable, and I didn't know it was NSAIDS.  I was scheduled for two-way endoscopy, mouth to butt, but they wanted $2,000 up front.  Finally, had a colonoscopy in 2022, 10 biopsies, didn't find a thing!  MC can go into remission, which I was, of course, desperate to do.  No more NSAIDS, tried to cut down on all the other pain killers, everything, chemicals that I knew triggered me.  So, no, they didn't find anything.  So sad that we have to make ourselves sicker and more injured to get a proper diagnosis! Microscopic colitis is being seen concurrently with gluten problems.  MC can be triggered by NSAIDS, SSRI's, all kinds of things. https://my.clevelandclinic.org/health/diseases/17227-microscopic-colitis Some links for maltodextrin health effects: https://pmc.ncbi.nlm.nih.gov/articles/PMC6409436/#:~:text=Altogether%2C these findings show that,the development of intestinal inflammation. https://www.mdedge.com/internalmedicine/article/193956/gastroenterology/maltodextrin-may-increase-colitis-risk  
×
×
  • Create New...