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. Haugeabs
      - Haugeabs replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil. Gluten free but not certified gluten free. Soy free, GMO free.
    2. trents
      - trents replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even...
    3. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    4. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    5. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748
    EBeloved
    Newest Member
    EBeloved
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Haugeabs
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Haugeabs · Posted

      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil.  Gluten free but not certified gluten free. Soy free, GMO free.   
    • trents
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By trents · Posted

      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even though celiac disease and gluten sensitivity are, technically speaking, not allergic responses, it would seem, nonetheless, appropriate to include "gluten" in that list for the present purpose. That would insure that food companies would be consistent with including this information in labeling. Best estimates are that 1% of the general population, many undiagnosed of course, have celiac disease and more than that are gluten sensitive."
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
×
×
  • 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.