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PizzaGuy

Celiac Cure.... A Possible Pill To Cure Celiac

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Hello,

Last Sunday, at a Super bowl party, I ran into a doctor who is working with a drug company on developing a pill to for gluten allergies/Celiac.

Has anyone heard about this? I was diagnosed 3 years ago and would be thrilled if this ever became a reality.

I asked him to keep me posted on the developments and as soon as I hear more, I will post it here.

Best

PizzaGuy

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I have heard of two different groups working on a pill for celiac. One is Alba and another is a group at Stanford. I do not remember any of the details (so typical) but I remember they are very different. I am sure you can find more info on this site regarding these two possible therapies. However, I do not think either one is meant to "cure" celiac.

Hez

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I saw Dr. Gary Gray speak at Stanford last fall. He had mentioned the development of a pill that will be used to fend off the horrible effects of accidental glutenings from cross-contamination issues and the likes. Though, it's not being developed as a cure nor as a license to indulge in gluten containing foods.

Of course, the one Dr. Gray spoke of might be something totally different than the one you have heard about.


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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Yes, it is true. Do searches for "Alba" "Zonulin" and things like that. I have posted about it a few times. Or google it....or look on celiac.com....lots of great info out there.

(sorry, I'd write more or find the links for you, but I am not feeling well tonight)

I have heard Dr. Patterson of Alba Therapeutics speak at a GIG group...........amazing the research that Dr. Fasano has done.

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I have heard of that, too. But of course, as with most pharmaceuticals, it will be a bandaid solution, not a cure. It will cover up/stop the symptoms, but will do nothing to fix the cause. Which of course, no pill can do, as pills can't change your genes.

Since, even after it comes out, nobody will know what the long-term side effects of taking a pill to eat gluten will be, I'll be waiting patiently for about ten years at least to see if it is safe, before I'll try it. The only good reason I'd take it would be in the case of accidental glutening to help me feel better quicker.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I've been following that too. It's going to be interesting how this pans out. I think they're actually in Phase 2 trials, with Phase 3 being the last "phase", followed by registration by the FDA.


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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I just recently went on "Singular" for my asthma and this prescription blocks the body from making antibodies that would cause an asthma attack. I *think* that the Zonulin that Alba is working on will act the same way; that it'll block anti bodies reaction to gluten. I *do not* think that Alba will market it to celiacs by saying "Eat all the gluten you want as we have the pill for you!" I *think* that Zonulin will be considered as a "back up" plan only for accidental glutenings. Like Singular you'll take it every day but once you stop taking it, the protection stops.

As to the other pill (if there is one) I have no clue as to what that is all about.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I agree with Ursa and Deb on this one. As Ursa says, I would only take it in the case of an accidental glutening. We have an autoimmune disease and there has never been a cure for autoimmune diseases. Only meds that can make you more comfortable. We must realize we will always be celiac and we will never beable to eat gluten without damages our bodies. It's the only truth we must always remember. As Ursa says, I wouldn't trust it without at least 10 years of trial studies, probably more. There is no cure for celiac's and the only medicine for us is gluten free.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Yeah I think I'd only take them for accidents, IF it worked (like Ursa said, I'd wait for a while to make sure this thing actually does work). And who knows if it'd ever be available in Canada. My friend's going to school for a pharmacist, and hes a SMART guy (the guy graduated highschool with like a 98% average!!). Hes told me a few times hes absolutely convinced there is a way for pills to help at the least stop the side effects/damage of Celiac. Who know if hes right tho. Hes told me to details about how it would work but..hes the pharmacist, i'm not, so I dont remember them technical terms :lol:

~ lisa ~


...Flames vs. Panthers, and Lifehouse, were best experiences OF MY LIFE!!...

...26 years old...

...Look in my forum profile for ways to read my public sports articles...

R.I.P. Uncle Gus (Sept. 21, 1971 - Oct. 2, 2004) ... R.I.P. Baba (Oct. 12, 1911 - Feb. 28, 2006) ... R.I.P. Uncle Lawrence (Aug. 7, 1943 - Jan. 4, 2009)

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Ursa and Deb: However, the zonulin pill IS to be taken before consuming gluten, not just for accidental glutenings.

It actually doesn't cover up the symptoms. While I certainly agree that it is not a cure by any means----it actually works differently. For those who have "true" Celiac (I don't know how it would affect NCGI), the mechanism behind Celiac appears to be a leaky gut. Dr. Fasano discovered something he called Zonulin. Zonulin is overexpressed in biopsy proven Celiacs, and this overexpression opens up the barrier cells, and gluten can pass through. Zonulin is also overexpressed in Type 1 Diabetes patients, and they are working on research in that area as well. AT-1001 works by stopping the overexpression of zonulin, therefore closing the gates. When gluten doesn't pass through the barrier cells in Celiacs, the autoimmune reaction can't occur (its not in a place it *shouldn't* be).

Also, the drug only gets absorbed in the small intestine, so it doesn't go into our bloodstream and other places, which makes it 1. more effective and 2. safer (I am not saying it is safe, but safer because of how it works).

I'm not arguing with any of you about your decisions about taking drugs---I completely respect that and believe that you all have very, very valid points! I just wanted to provide a more accurate view of what Dr. Fasano's drug is doing.

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Here is some info I found on the web for those who are interested. I'm NOT claiming these sources are reliable, so it's up to you to make your own determination!!

http://www.celiaccentral.org/Research/Rese...130/vobId__157/

http://www.sciencenews.org/articles/20030621/bob9.asp

http://www.diabetesmine.com/2006/12/whats_up_with_t.html


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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i've heard the same info as happygirl-----this medication will not be something you can take AFTER an accidental glutening to avoid the problems associated with that. it must be taken BEFORE consuming gluten in order for it to be effective. the only way it would work for accidental glutening is if you knew you were going to be glutened and took it ahead of time-----but then it wouldn't be an accidental glutening!LOL! my understanding is that AT-1001 will only work for true celiacs, not non-celiac gluten intolerance or wheat allergic people.

the world has made so many advances in medicine-----i would like to think that one day they could cure auto-immune diseases. after all, if the disease can be turned on, surely there must be a way to turn it off.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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I believe it is the Stanford drug that is related to minimizing the effects of small amounts of gluten, whereas the AT-1001 drug is to stop the gluten reaction (taken like a lactaid, essentially).

Stanford: http://www.celiacsprue.org/research.htm

Dr. Fasano/Alba: http://www.albatherapeutics.com/about-alba...m.html#11102006

http://www.ncbi.nlm.nih.gov/entrez/query.f...p;dopt=Abstract

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I will never intentionally eat anything with gluten, pill or not. There would have to be years and years of proven facts behind it before I would trust it. Sorry, but that is how I feel and I am sure Ursa does too.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Ursa and Deb: However, the zonulin pill IS to be taken before consuming gluten, not just for accidental glutenings.

It actually doesn't cover up the symptoms. While I certainly agree that it is not a cure by any means----it actually works differently. For those who have "true" Celiac (I don't know how it would affect NCGI), the mechanism behind Celiac appears to be a leaky gut. Dr. Fasano discovered something he called Zonulin. Zonulin is overexpressed in biopsy proven Celiacs, and this overexpression opens up the barrier cells, and gluten can pass through. Zonulin is also overexpressed in Type 1 Diabetes patients, and they are working on research in that area as well. AT-1001 works by stopping the overexpression of zonulin, therefore closing the gates. When gluten doesn't pass through the barrier cells in Celiacs, the autoimmune reaction can't occur (its not in a place it *shouldn't* be).

Also, the drug only gets absorbed in the small intestine, so it doesn't go into our bloodstream and other places, which makes it 1. more effective and 2. safer (I am not saying it is safe, but safer because of how it works).

I'm not arguing with any of you about your decisions about taking drugs---I completely respect that and believe that you all have very, very valid points! I just wanted to provide a more accurate view of what Dr. Fasano's drug is doing.

Yes I understand that and like the Singular, it is to be taken daily, perhaps before breakfast.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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DD: I fully respect your opinion!

Debmidge: When I heard Dr. Paterson speak (2006), he presented it as you would take it before a meal in which you would consume gluten. I think he said like three times a day, before b, l, and d. I remembered thinking it was interesting, because even if someone were to use this drug, it would still benefit them from keeping a gluten free house. Say I didn't plan on eating gluten for breakfast, so I had a gluten-free bagel and cream cheese, and didn't take the pill. If the cream cheese was cross contaminated, I could still get sick. So the choices would be to take it every single time, or keep a gluten-free house like now, and ony take it when I "want' to eat out/eat gluten in my home.

I am going to hear their head nutrionist speak in March (U of Maryland's Celiac Center) and she is supposed to discuss their research, etc.....definitely looking forward to this.

(and the irony of all of this, is that I don't have a gold standard dx....I only had the antigliadin test run and was positive...went gluten free and got better....so I don't know if I'm a "true" Celiac in which this drug would even work....or if I'm a non Celiac gluten sensitive. I'm just fascintated by the research that is being done and was so intrigrued. Dr. Paterson's father had Celiac, as well, if I remember correctly.)

Laura

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I just wonder if there is a pill for Celiacs if doctors will all of a sudden become more knowledgeable about Celiac Disease/gluten intolerance. I think the reason doctors don't know more about it is because there is no drug for Celiac disease. My friend works in a doctors office and she said there are drug reps coming in all the time with food for the staff and taking the doctors out to lunch. I personally think it should be against the law.

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Well we all have our own opionions on this issues thats for sure, I can't make any decision about it until its a reality, I mean until then we are just guessing.

However someone said (maybe Deb) that we have an autoimmune disease and there will never be a cure for it. Again this is my opinion but I believe you are completely wrong... think of how many medical things they said "we'd never have...." and we now have them. Personally I do believe there will be a cure for Celiac and I don't think its a long time coming. I think with things like stem cell research and all the work thats being done with genes they will soon (in our lifetimes) learn how to turn particular genes on and off and that could be a cure for a lot of things, celiac included.

Send out positive energy on this issue, I think its just around the corner.

Susan

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I wasn't planning on joining this discussion because I'm not sure where I stand on it. As much as I would love a pill to avoid accidental glutenings, I don't know that I would want to let myself get my hopes up that something like that could happen. It would just make some social situations easier.

Well ironically yesterday at work I was talking to a co-worker and he mentioned a restaurant that I love their risotto. He said he loves risotto and so I asked if he'd ever been to Risotteria. Ironically he lives a few blocks away. This ofcourse brought up celiac. Well it turns out his sister works for Alba and is very instrumental on working on the pill. In fact she suspects he has celiac and is keeping on him to get tested.

He said she is always looking for people for trial studies. I told him I'm not really comfortable intentionally ingesting gluten, but I'd love to be in touch with her.

I'll keep you posted on anything interesting.


Jillian

Positive Blood test and Biopsy

Inflamed stomach lining

Gluten free since July 6, 2005

Tarrytown, NY

"Sometimes being a b$tch is all a woman has to hold onto." - Dolores Claiborne

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Research for immune disorders is always going on. I've always felt that cancer is from viruses and looky here some cervical cancers they've just discovered are viral. I've always felt that research into AIDS/HIV, which is immune in nature, may not discover a cure right away, but would open doors to other breakthroughs for other immune disorders.

Stem cell research is fascinating and I'd really love to see cures found from this research. I would imagine that the mainline drug companies frown on stem cell research as it'll cut them out of the financial pie should diseases get cured; but who knows how drug companies feel....for instance if we can find the gene for families who make too much cholesterol then their sales for those cholesterol drugs would go down.

A celiac disease pill for accidential or unknowingly glutenings will help those who have that risk in their lives. Some with celiac disease eat so "to the earth" that they know they won't get accidentially glutened so they will less likely want to use a pill.

I also respect Darling Deb for her decision to stay away from any prescriptions made for blocking immune system response to gluten. She's been through a lot and doesn't want to enter into a situation that will further impair her immune system (at least, Deb, I think this is what you mean :)


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Having read the links people have left here, I'm skeptical about the idea of a pill that could do for celiac disease what lactaid does for lactose intolerance. For one thing, the researchers seem to be concentrating on the intestinal attributes of the disease. . .what about those of us for whom the digestive system is not a problem? If it won't help me, even if it does mean others can eat gluten without symptoms, I think it would make my life more difficult, because people would assume that it was no big deal, because there's a pill for it. (I already have tons of trouble explaining to people that I'm not most celiacs, and I have celiac reactions to corn, soy, millet, buckwheat and oats.)

I'm also skeptical about whether it would work at all - autoimmune reactions are tricky (witness the trouble we've had with AIDS and cancer) and genetics are even more complicated (there's a reason why researchers stick to tinkering with plants, bacteria and viruses. . .it's easier, but even that still has unintended consequences). There are hundreds of ways in which you might be able to stop an autoimmune disease from occurring or progressing, but no guarantee that any of these ways would work - take AIDS for an example. The best minds in the business have been looking for twenty-odd years; eight drugs (to my knowledge) have made it into Phase 2 human trials and none of them actually work. A few of them even do the opposite of what they were intended to. Then there's also the case of the British drug company who did phase 1 trials of a drug designed to block the immune system (to help deal with autoimmune diseases and cancers) which showed no negative side-effects in apes, but nearly killed six of the seven healthy volunteers (elephantosis, kidney, liver, heart, lung and pancreatic damage, and ended up in comas!!) - three of whom now (six months later) have late-stage cancer as a direct side-effect of the trial. We know much less about the human body, immune system and genetic code than we like to think we do.

And if a pill worked against all the odds. . .would I take it? Probably not, except as a one-time dose to ease symptoms of an accidental glutening (though knowing my luck, they'd probably put cornstarch in the pill. . . ). Do you realise just how cheap that pill would have to be for it to be cheaper to take three or four a day instead of buying gluten free food? My weekly spending on specifically gluten free food (ie, foods I would not eat if I were on the celiac pill) is about $10 (being generous). If I take a pill before each and every meal, that would be three pills a day, seven days a week. That would mean that the pharmaceuticals company would have to be able to make, market, and sell this wonder drug for less than 47 cents a dose. . .To give you an idea of the enormity of that demand, the birth control pill, when purchased as a generic, at cost, runs about 85 cents a dose. Singulair (to which the celiac pill has been compared) is about $3.17 a dose; and a drug designed to interfere with the immune system (similar to what a celiac pill would have to do), such as interferon is, at cost, about $150 a dose. And then you STILL have to pay for gluteny food. Is life as a celiac really that horrible?

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I don't think it's like a "Lactose" pill but more like a Singular which blocks immune response in asthmatics. It's likely that some celiacs would have a use for it: those who travel for work, those who have a mixed (celiac disease and non celiac disease) households; the ones who must attend weddings, etc. If someone has no use for an immune response med then there's no need for you to get a prescription for it. This pill would be optional depending on your circumstances.

I think the celiac disease pill would also help those with non digestive symptoms as it would block the specific immune system response gluten makes. It just makes sense that it would help the entire bodily sysem.

I am going to read more about Zonulin and how it operates to determine if it can help non digestive celiacs.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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like jkmunchkin i was also not planing to join this topic...that said here i go. Please do not YELL at me as I am NOT writing this as FACT :ph34r: . It is only a guess that I have because of a product I already take everytime i go out to eat. I take the enzyme DPP-IV and it is wonderful for ME when i get CC at restaurants. My guess is that the research is based on that enzyme. Here is some info from the company.

Dipeptidyl peptidase (DPP-IV) is a protein that has multiple functions in the body. It is known under different names depending on where it is found. When DPP-IV is on the surface of the T-cell (lymphocyte), it is called CD26, and supports immune function. When this enzyme is found on and imbedded on the epithelial brush boarder mucosal membrane of the intestinal tract lining it is known as DPP-IV. The importance of DPP-IV is that it has primary function in breaking down casein and side chain activity in breaking down gluten. Thus the use of a DPP-IV containing enzyme will support the digestion of casein-containing milk products as well as the protein in gluten-containing grains.

please fell free to correct me if you have additional info

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I've heard of the supplement-type products that you're referring to. I've thought about trying it for just exactly that - CC at restaurants.

Just a few questions if you don't mind -

- Have you also taken it after an accidental glutening? Does it help?

- I'm not sure if you get neuro, pain or mood symptoms from gluten. If you do, does it help with those as well? For me, those symptoms are far worse than any GI symptoms I get.

I don't think I'd take a supplement to prevent glutening on a regular basis, just because I've got two small gluten-free kids (ages 3 and 4) and would feel guilty if they got glutened and I didn't. But, my husband goes to business conferences a couple times a year where spouses are invited and the company picks up the tab for the whole thing. If it were something that worked, I would definitely take it then.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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