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

The New Celiac Drug Is Out There

gatita

By gatita
in Coping with Celiac Disease

Recommended Posts

gatita Enthusiast
gatita
Posted

Anyone seen this?

 

Open Original Shared Link

 

I can't help but worry that even with the drug, gluten could be causing damage other than gastro-intestinal. But I admit I don't know much about how it works yet. For me, I might consider taking it only to help prevent accidental glutenings, but I don't know what the side effects are yet.

 

What do y'all think of this? I guess I'm skeptical.

 

 

 

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

Celiac.com Sponsor (A8-M):


  • Replies 113
  • Created
  • Last Reply
pricklypear1971 Community Regular
pricklypear1971
Posted

Wow. It's definitely something to watch.

I'd like to know more about the drug, how it works....what about other AI diseases? I guess that's for studies - how people with more than one AI disease are affected.

bartfull Rising Star
bartfull
Posted

I'll pass. Why should I take a drug that will cost me money, force me to see a doctor, probably give me side effects, and may even cause real harm (anybody remember the hormone replacement therapy all the doctors wanted us on?), when I can stick to a gluten-free diet for free and with no harmful effects?

GottaSki Mentor
GottaSki
Posted

Certainly interesting...glad to hear these trials are finally progressing...they were on hold for a bit there.  I do know that after the damage that gluten has caused me along with my children I don't think we will ever join "the gluten loving americans" mentioned in the article.

 

That said.... I would love something that could be taken to avoid cc issues for my kids and grands...someday...once it has been thoroughly tested -- and should that day come I can't see pounding the gluten -- would only use it to safely dine out of our home occasionally without the whole research, question and pray method currently being used by most of us.

cap6 Enthusiast
cap6
Posted

I'll pass. Why should I take a drug that will cost me money, force me to see a doctor, probably give me side effects, and may even cause real harm (anybody remember the hormone replacement therapy all the doctors wanted us on?), when I can stick to a gluten-free diet for free and with no harmful effects?

I'm afraid I am with you on this one.  had a life time of drugs and side effects.  For myself, I will stick with the diet.  Not keen on the restrictive diet, but overall it is preferable to a drug.   

Ciel121 Apprentice
Ciel121
Posted

I was a bit horrified by this article. The industry has it backwards and it seems it always will. The reality is drugs don't fix anything, they just cause more problems. The only ones who profit are the pharmaceutical industries. The reality is we need to eat healthier and adjust our lifestyles--meaning getting rid of gluten in general for everyone (no one really digests it) and having healthier alternatives. Yes, we need to exercise, yes we need to eat healthier as a nation. I don't think drugs fix anything except in emergency medicine and headaches...

eers03 Explorer
eers03
Posted

I would submit that drugs can help or harm people.  It depends on the compound and the disease state in question.  If you ask someone who is living because a drug like gleevec keeps their cancer from progressing further, I would venture to say they will tell you they are grateful for the "evil, greedy, big pharma companies".  Its imperfect to be sure, but it's what we have.

 

With that said, for my celiac disease, I am comfortable sticking with a gluten-free diet.

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

Celiac.com Sponsor (A8-M):


JNBunnie1 Community Regular
JNBunnie1
Posted

"Raise the villi, opening the receptors and allowing gluten to once again be

absorbed by the body."

 

Is it just me or is there SO MUCH wrong with this statement, scientifically?

GottaSki Mentor
GottaSki
Posted

Ya....that is not my understanding of the items currently in various stages of testing...also find it strange that someone diagnosed nine years ago has yet to find good tasting gluten free food.

nvsmom Community Regular
nvsmom
Posted

I agree, Lisa. I was a bit taken aback when she was describing her life as a "living hell" just because she couldn't eat bread... Huh.

The only drug I would consider would be one where they could "turn off" my immune response to gluten - without any side effects. It would be nice to have something I could take when travelling or staying with people so I wouldn't have to worry about cc so much, but it would have to have zero side effects for me to consider it... It is not that hard to pack myself a cooler when I travel.

I am not sure how raising flattened villi from the dead would work... Zombie villi. LOL ;)

dani nero Community Regular
dani nero
Posted

It feels like "if you can't beat them, join them".

I am who I am. I don't eat gluten, and I never want to.. not after it has ruined 20+ years of my life. The world will have to accept that and make space for me, without this drug.

IrishHeart Veteran
IrishHeart
Posted

that said.... I would love something that could be taken to avoid cc issues...someday...once it has been thoroughly tested -- and should that day come I can't see pounding the gluten -- would only use it to safely dine out of our home occasionally without the whole research, question and pray method currently being used by most of us.

 

THIS

 

also find it strange that someone diagnosed nine years ago has yet to find good tasting gluten free food.

 

THIS TOO (and she is just being absurd)

 

 

I am who I am. I don't eat gluten, and I never want to.. not after it has ruined 20+ years of my life.

 

And THIS as well. Most definitely THIS!

 

Thanks,you  guys for saying all this!!  I saved a bunch of typing time! ;)

jerseyangel Proficient
jerseyangel
Posted

It's not for me. I am leery of new drugs, you never know what else they might or might not lead to down the pike.

I also tend to get most listed side effects -- just lucky that way.

The "suffering" on a gluten-free diet is overblown in my opinion. I eat very well, and I've yet to have a complaint from dinner guests at my home where I cook strictly gluten-free.

dilettantesteph Collaborator
dilettantesteph
Posted

"Raise the villi, opening the receptors and allowing gluten to once again be

absorbed by the body."

 

Is it just me or is there SO MUCH wrong with this statement, scientifically?

 

That jumped out at me too.  Apparently they are getting rid of science and medical journalists and having general journalists report on everything.

 

It would be great if this works, not for people to indulge, but for those who suffer from constant contamination problems.

IrishHeart Veteran
IrishHeart
Posted

.  Apparently they are getting rid of science and medical journalists and having general journalists report on everything.

 

 

 

I am afraid that happened a long time ago. sigh. People take the word of various bloggers, charlatans, websites and hack writers ....without doing a single bit of research. I can tell you this: my journalism students wouldn't have gotten away with some of this malarkey.

 

I mean, where are the citations? the name of the drug and the manufacturer? who's in the trial?

Is a leading celiac researcher behind it? It provoked more questions than anything else.

kareng Grand Master
kareng
Posted

That jumped out at me too.  Apparently they are getting rid of science and medical journalists and having general journalists report on everything.

 

It would be great if this works, not for people to indulge, but for those who suffer from constant contamination problems.

 

 

That's what I thought, too.  It wasn't really about a drug trial, just a fluff piece of " journalism".

 

I think it would be nice to have something you could take once a week when you wanted to go out to eat or to a party.  You could try to choose gluten-free items but not have to worry about a little cc.

kareng Grand Master
kareng
Posted

Remember, this is the newspaper and a "staff writer" for Peabody Kansas paper.  Peabody is in the middle of no where and has a population of about 1200 people.  I wouldn't expect good writing.

GlutenStinks15 Explorer
GlutenStinks15
Posted

I am afraid that happened a long time ago. sigh. People take the word of various bloggers, charlatans, websites and hack writers ....without doing a single bit of research. I can tell you this: my journalism students wouldn't have gotten away with some of this malarkey.

 

I mean, where are the citations? the name of the drug and the manufacturer? who's in the trial?

Is a leading celiac researcher behind it? It provoked more questions than anything else.

I found this article which is slightly more helpful with regards to company name, etc. Open Original Shared Link

 

However, I'm still skeptical as are the rest of you.

kareng Grand Master
kareng
Posted

I found this article which is slightly more helpful with regards to company name, etc. Open Original Shared Link

 

However, I'm still skeptical as are the rest of you.

 

 

Haven't read it yet but the title isn't very promising that the reporter understands the subject:

 

"Celiac Disease: New Treatment Developed For Gluten Allergy"

 

 

Too bad Celiacs don't have a "gluten allergy".

IrishHeart Veteran
IrishHeart
Posted

 

 

"Celiac Disease: New Treatment Developed For Gluten Allergy"

 

 

 

 

 

argh!!! where's that face-palm emoticon guy. K <_<  "gluten allergy" argh!

kareng Grand Master
kareng
Posted

Turns out to not be a bad article.  Looks like this drug isn't being trialled on people yet.  Wonder what one the Peabody lady was taking?  I hope it isn't one of those internet "Wonder Drugs".  :angry:

GlutenStinks15 Explorer
GlutenStinks15
Posted

Turns out to not be a bad article.  Looks like this drug isn't being trialled on people yet.  Wonder what one the Peabody lady was taking?  I hope it isn't one of those internet "Wonder Drugs".  :angry:

Exactly!

 

The 'gluten allergy' part was annoying, but the article itself isn't terrible and explains things better than the Kansas article. There was a similar article in the Chicago Tribune, but it had less info than this one did.

 

I think I would just be interested in taking something like this if I was going to be somewhere with a major risk of CC. I would not like to take it on a regular basis though. As it is I have the thyroid meds to take daily.

Adalaide Mentor
Adalaide
Posted

Here is my problem with this drug. It isn't being developed to make our lives better in the way that we all envision a better life in a world filled with gluten. A magical pill that can prevent us from getting horridly ill when we dine out or eat at our well-meaning friend's house, etc. It is being developed by people who for some reason have this skewed sense that our lives are somehow less meaningful because we can't eat bread and bagels and pasta made of wheat. I'm quite sure I can't say exactly what I think of people with this opinion here without getting in a buttload of trouble, but it is quite colorful. I for one will sure as hell not line their pockets with my money. I frankly hope it fails miserably because if pharma gets their hands on a "viable" treatment I fear the worst for funding for an actual cure.

kareng Grand Master
kareng
Posted

. I'm quite sure I can't say exactly what I think of people with this opinion here without getting in a buttload of trouble, but it is quite colorful.

 

 

LOL!

 

colorful!

Open Original Shared Link

IrishHeart Veteran
IrishHeart
Posted

 I'm quite sure I can't say exactly what I think of people with this opinion here without getting in a buttload of trouble, but it is quite colorful. 

 

 

Knowing you as I do now, I imagine it is similar to what I am thinking and it sounds like this:

 

dirty-language-smiley-emoticon.gif

 

 

 and nice rainbow, there K!  :D love it!

Archived

This topic is now archived and is closed to further replies.

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 commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      13

      Top Brands of Gluten-Free Canned Chili

      While it seems unlikely to contain intentional gluten ingredients--and based on the ingredients you provided, this canned Wendy's chili appears to be gluten-free, but with a very important caveat: it cannot be considered certified or guaranteed gluten-free due to the potential for cross-contamination and the ambiguous nature of "natural flavors."
    2. Scott Adams
      - Scott Adams replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Going for upper endoscopy today

      Welcome to the club!😉 This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):
    3. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Guinness, can you drink it?

      I could not find the thread, but I recall at least one user who was drinking regular gluten beer daily but getting celiac blood tests done often (I think it was monthly) and doing a biopsy each year and all celiac disease tests were always negative. Everyone is different, but in general regular beer would be considered low gluten (not gluten-free!). I have...
    4. maryannlove
      - maryannlove commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      13

      Top Brands of Gluten-Free Canned Chili

      I have same question as trents above. After I mentioned how much I liked Wendy's chili, a neighbor gave me a can b/c I didn't know could buy it in a can. Is gluten free in Wendy's restaurant, but can doesn't say gluten free so afraid to eat it. (Can says provides 50% Daily Value of protein, another plus.) Below are ingredients on can. Would the experts...
    5. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Gluten free nuts

      Azure Standard (https://www.azurestandard.com/) is one of my gluten-free vendors. I've purchased nuts, "grains", flours, and many other products there. If you are not familiar with Azure, you have to set up an account (no cost) and get your purchases either via shipping (expensive) or "drop" (free if you buy a reasonable minimum). Search their website...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,271
    • Most Online (within 30 mins)
      7,748
    NancyWM
    Newest Member
    NancyWM
    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
      Going for upper endoscopy today

      By Scott Adams · Posted

      Welcome to the club!😉 This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      I could not find the thread, but I recall at least one user who was drinking regular gluten beer daily but getting celiac blood tests done often (I think it was monthly) and doing a biopsy each year and all celiac disease tests were always negative. Everyone is different, but in general regular beer would be considered low gluten (not gluten-free!). I have no issues with Daura Damm, but those who are super sensitive might.
    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      Azure Standard (https://www.azurestandard.com/) is one of my gluten-free vendors. I've purchased nuts, "grains", flours, and many other products there. If you are not familiar with Azure, you have to set up an account (no cost) and get your purchases either via shipping (expensive) or "drop" (free if you buy a reasonable minimum). Search their website for a drop location in your area. Each drop location has a local volunteer(?) coordinator who coordinates with the local customers. I go to a drop 4-5 miles from my home that delivers every 2 weeks. We seem to range from 8-18 customers at a given delivery. The downside of the drop is that you have to be there when they say. They give you a few days notice of the precise time, though, and they are punctual. Their pricing relative to other vendors for various products ranges from best price to overpriced, so you have to shop and compare. Quality is mostly good but once in a while you get a dud - however they've been very responsive to giving me a credit on the few occasions when I've complained. In my opinion, they are not as transparent about gluten as they could be. Some products are labeled "gluten free" and so far I trust that. Many products are labeled "Azure Market products are re-packaged by Azure for your convenience in a facility that meets Food Safety Modernization Act (FSMA) standards, including an approved allergen control program." I've corresponded with them over this and they all but say this means gluten free. I've come to trust this, with a little nervousness, but I wish they would be more explicit. They also sell a lot of gluten-containing products. Frankly, I think they are overlooking a business opportunity to become a trusted source for the gluten-free community by not being more clear about gluten. Among Azure products I've purchased are "Walnuts, Baker's Pieces, Raw", "Cashews, Raw, Large White Pieces, Organic" and "Missouri Northern Pecan Grower Pecans Fancy Native, Raw, Halves". The walnuts and cashews were very good and the pecans were fabulous. For almonds, I've been buying Blue Diamond unsalted when they go on sale (mostly from Safeway). The salted ones are probably fine too but the flavored ones I avoid now that I am gluten-free. I also buy products including nuts from CostCo (cashews, shelled pistachios). Their nuts usually contain a "made in a facility that processes wheat" statement, which is scary. I've contacted customer service about various Kirkland products and they will usually give you a response <<for a specific lot>> whether it really was made in a wheat facility (sometimes yes sometimes no). For the "Kirkland Signature Fancy Whole Cashews, Unsalted, 40 oz" and "Kirkland Signature Shelled Pistachios, Roasted & Salted, 1.5 lbs", I got a "safe" answer and I ate them. I got an "unsafe" answer once for "Kirkland Signature Fancy Whole Cashews with Sea Salt, 2.5 lbs" and "Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs" and I don't look at these anymore. Again, these answers were given for specific lots only. They will accept an unopened return for cash if you find out you don't want it. Costco also sells "Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs" that are labeled gluten free. My celiac kid eats them all the time. I pretty much only eat food that I prepare myself from scratch. My celiac symptoms are not that overt, so I can't say for certain I could identify a glutening. However, my antibody levels dropped 25 fold (into normal range) since my dx earlier this year. Hope this helps.
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Doterra literally has saved my life hands down.Nateral supplements that really are pure grade and does work organically with ones body. I had to stop all my nateral supplements to be a good puppet for medical so I can get the financial help that my body won't allow me to do more days than not these days, every day with menopause.....Not feeling well.Had to switch " medical team" because I was told I wasn't celiac though I am gluten-free since 1994! I am also positive HLA-DQ2. I think doctors down play it because on quest lab work it states " However 39% of the U.S  general population carry these HLA-DQ variants, as a consequence, the presence of HLA-DQ2 or  DQ8 or both variants is not perse diagnostic of celiac disease". Hintz the down playing of celiac disease......This needs to change because doctors seem to down playe it because when I showed the past 2nd and 3rd  doctors that I waisted my time on this year showed my that line and absolutely down played it.4th pcp this year.I live in Patterson California and would love for a few of us to go to mayors office and make this disease heard
    • Midwesteaglesfan
      Going for upper endoscopy today

      By Midwesteaglesfan · Posted

      Back home after the scope.  Dr said as soon as he got in there it was clear signs of celiacs.  Must be a decent amount of damage.  I don’t remember the post procedure conversation as the anesthesia was still wearing off but that’s what my wife says anyway.  Still the biopsy results to come back but pretty definitive and now I get to learn to live gluten free
×
×
  • 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.