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Anyone Else Waiting Eagerly For The Day The Treatment Goes On Sale?

CGally81

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CGally81 Enthusiast
CGally81
Posted

I went on Google News and searched for "celiac" and "gluten intolerance" to see what came up, and I was pleasantly surprised to see that an experimental treatment called AT-1001 is in the works, that supposedly has shown results so far. Supposedly you have to take it a few hours before you might eat anything with gluten in it. What it does is it stops the zonulin from opening up the openings in the intestine that gluten slips through (they're supposed to be opened only enough to let vitamins and nutrients through).

It's said to have worked well on the few people it's been treated on. And would be ready for the public in "5 years". Blah. I can't wait for 2014. I take it that this treatment would be something you'd have to take every morning, but it would help prevent us from being accidentally glutened. I personally plan to not eat gluten even IF my celiac is cured for, well, a secondary reason: I'm autistic (officially diagnosed with that in childhood), and gluten is converted into opium in our brains, a fun little fact I learned this year. It would certainly explain a lot, like how weird I'd been acting most of my life, and my flat monotone (which went away only a few years ago - a silent celiac symptom? Ha ha ha).

There's a separate group of researchers trying to create a genuine cure instead of a treatment, that supposedly "retrains" the body to not react a certain way to gluten, or does something to the zonulin. Sorry, I didn't catch the details.

I signed up for Google News alerts on both these things so that every week, if a news story breaks regarding the possible treatment or cure for celiac, I'll know. I imagine it won't be for years, but look on the bright side, our generation will get the cure, and the next generation might get a vaccine someday!

Heck, there's already a vaccine for swine flu, and researchers in Thailand came up with a semi-cure for AIDS (it doesn't work on everyone), so science marches on.

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Lito Newbie
Lito
Posted

Australia is working on a vaccine, supposedly has worked on mice, the first group test began on april 2009. and we should have results in 11 months, then a second group goes into test, and lastly a third massive group...

I just hope, from the bottom of my heart that a "cure" is found. I would never eat gluten again as i used too, but i would be nice to be able to skip a day or two of the diet...

CGally81 Enthusiast
CGally81
Posted
  • Author
Australia is working on a vaccine, supposedly has worked on mice, the first group test began on april 2009. and we should have results in 11 months, then a second group goes into test, and lastly a third massive group...

I just hope, from the bottom of my heart that a "cure" is found. I would never eat gluten again as i used too, but i would be nice to be able to skip a day or two of the diet...

Wow, it sounds like the vaccine is coming along better than the treatment! On the other hand, if it's a vaccine and not a cure, then that means it won't work on those of us who already have the disorder? Or is it possible that a vaccine can also be a cure?

I seriously can't wait. Like you, I too won't go back to eating a lot of gluten; heck, as an autistic individual, gluten is a drug to me anyway. I remember having difficulty controlling outbursts at times, almost as if I had Tourettes or something. I haven't had that problem for a while, but looking back, the number of gluten-related foods in my diet had been reduced over the years due to a general desire to eat healthier anyway. It would be nice to at least have birthday cake again though, without getting spaced out and hungry afterwards.

Lito Newbie
Lito
Posted

the idea is to slowly desensitize the celiac patient. You can check the first link, it gors to the manufaturer page, its called 'nexpep'

Open Original Shared Link

And here you can see how the tests are going!

Open Original Shared Link

YoloGx Rookie
YoloGx
Posted

It would be marvelous to not always be such a freak--esp. during trips when finding the right food could be dicey--or even going on a first date and worrying about that kiss from a likely glutenous mouth!! And then there is the whole restaurant thing where you have to make a practical fool of yourself to keep away from possible CC.

So yes, do keep us abreast of news about possible antidotes, shots, pills or whatever.

Otherwise like the rest, overall I don't want to go back to eating gluten. Heck these days I am not even eating grains --though that may change eventually as my gut heals more and gets over the candida overgrowth.

However --there's plenty of easy gluten free cakes and cookies one can either make from scratch or use the pre-mixed variety for that special birthday party etc.

Bea

Jestgar Rising Star
Jestgar
Posted

I don't think I would ever take it. I've become so much more aware of my body and its subtle reactions to everything, that I wouldn't want to take something that would mask a reaction.

CGally81 Enthusiast
CGally81
Posted
  • Author
I don't think I would ever take it. I've become so much more aware of my body and its subtle reactions to everything, that I wouldn't want to take something that would mask a reaction.

I think the point is to heal the body and prevent the reactions, rather than "mask" them. I understand your concern. I personally would definitely take such a cure, and remain gluten-free anyway. Then again, like I mentioned before, I have a secondary reason to remain gluten-free anyway. But still, I don't believe in taking chances, yet I do believe in taking help. So I'd see this as a help.

Now if only something can cure the way autistic people's brains convert gluten into opium, and I'll be fine.

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momxyz Contributor
momxyz
Posted

an ounce of prevention is worth a pound of cure....

I've always resisted medication unless it is absolutely necessary. I would rather just focus on good nutrition...

but, on the other hand. If this drug was something you didn't have to take continuously to obtain its benefits... then yes I would be most interested. Especially when going to restaurants or family/social gatherings amongst less than understanding folks. How nice. Take the medication a few hours in advance, go to the occasion.. no worries....

Jestgar Rising Star
Jestgar
Posted
I think the point is to heal the body and prevent the reactions, rather than "mask" them. I understand your concern. I personally would definitely take such a cure, and remain gluten-free anyway. Then again, like I mentioned before, I have a secondary reason to remain gluten-free anyway. But still, I don't believe in taking chances, yet I do believe in taking help. So I'd see this as a help.

Now if only something can cure the way autistic people's brains convert gluten into opium, and I'll be fine.

I guess I'm saying that I don't believe that stopping the reaction in my gut is going to stop whatever gluten does to the rest of my body. I know the theory is that if your gut reacts properly, then gluten can't get into the rest of your body but I'm not really ready to believe that yet. I'll wait until the drug has been on the market for several years before I'll even consider it.

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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