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The New Celiac Drug Is Out There


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113 replies to this topic

#1 gatita

 
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Posted 22 May 2013 - 03:59 PM

Anyone seen this?

 

http://peabodykansas...265707269657665

 

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.

 

 

 


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#2 pricklypear1971

 
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Posted 22 May 2013 - 04:18 PM

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.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
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Gluten-Free since 6/2011.
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 bartfull

 
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Posted 22 May 2013 - 04:28 PM

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?


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#4 GottaSki

 
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Posted 22 May 2013 - 04:35 PM

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.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 cap6

 
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Posted 22 May 2013 - 05:09 PM

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.   


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#6 Ciel121

 
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Posted 22 May 2013 - 05:11 PM

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...


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#7 eers03

 
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Posted 22 May 2013 - 07:02 PM

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.


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#8 JNBunnie1

 
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Posted 22 May 2013 - 07:34 PM

"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?


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If you're going through hell, keep going. ~Winston Churchill

#9 GottaSki

 
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Posted 22 May 2013 - 07:57 PM

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.
  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#10 nvsmom

 
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Posted 22 May 2013 - 09:11 PM

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 ;)
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#11 dani nero

 
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Posted 23 May 2013 - 02:03 AM

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.


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#12 IrishHeart

 
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Posted 23 May 2013 - 04:48 AM

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! ;)


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#13 jerseyangel

 
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Posted 23 May 2013 - 05:40 AM

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.
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#14 dilettantesteph

 
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Posted 23 May 2013 - 07:02 AM

"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.


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#15 IrishHeart

 
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Posted 23 May 2013 - 07:17 AM

.  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.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





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