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'eat What You Want' Pill Caution
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36 posts in this topic

Ditto about the research, Bev and Vincent. I told Dr. Paterson how he gave me a lot of hope --- not only for myself/Celiacs, but for others. They are taking a huge risk (in terms of money) and medical advancements aren't made without risks. He really inspired me!!!!!!!!! I wish I had a video of the talk for everyone to see!!!

Vincent-I don't remember if he mentioned when the next round (Phase II) of testing will be begin. He did talk a lot about requirements for people to be able to participate (proven biopsy, etc.) but I don't recall about timeframe for testing. There were others from my Celiac group (VaBeach) that were at the Richmond meeting---I can ask at our next meeting if anyone has an answer to that. Maybe the press release that comes out Monday will address it?

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Laura, a question:

It's my understanding that the recognition of the 33-mer that triggers the reaction occurs in the gut. So I don't understand how suppressing zonulin to 'keep the gates closed' makes any difference. Is the implication here that the immune reaction does *not* take place in the gut, but outside of the intestines?

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hey tarnalberry,

Yes, that is what I took from it, and from the pictures that were presented. (that the reaction occurs once the gluten has breeched barrier cells, through the tight junction). Now, I don't understand it fully, but that is the basis that the zonulin research is going on. But, yes, I do believe it is the 33-mer that triggers the reaction for Celiacs...My understanding was that it is ok until it breeches the barrier cells, and then the auto-immune cells (in Celiacs) recognize that chain as "bad."

I took this from the website of Alba Therapeutics, under "Celiac Disease"

"It is known that altered intestinal permeability (leaky gut) is a hallmark of celiac disease and tracks the severity of the disease. It is likely that zonulin-induced leaky gut is both a cause and a consequence of the disease, facilitating transport to gluten which then triggers an inflammatory process, resulting in a leak which can be blocked by zonulin antagonists."

Hope that helps?! Let me know.

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Wow--thanks Laura--this is all so interesting :)

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Thanks girl---I am just trying to present the information the best I can from what I heard and took notes on! I seriously wish everyone could have been there!

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Thanks girl---I am just trying to present the information the best I can from what I heard and took notes on! I seriously wish everyone could have been there!

Im gald you did!!!

BTW PLEASE link the news release when its up :D

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Well, I tell ya--I appreciate you taking the time to take notes and posting for us. I would love to have been there. It is exciting to think of what might come out of all this.

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Maybe I'm just extremely skeptical, maybe it's just because I have bad reactions to drugs, but I would still choose the diet. If others want to use it, and it really works, then I am glad for them! B)

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As requested:

http://www.celiac.com/st_prod.html?p_prodid=1310

Alba Therapeutics Announces Positive Celiac Disease Trial Results

Celiac.com 03/14/2006 - Alba Therapeutics Corporation announced today successful completion of Phase Ib proof-of-concept studies for its lead compound, AT1001. In a 21-patient cohort of celiac disease sufferers, the oral administration of AT1001 versus placebo control induced a significantly positive result in the trial's primary target endpoint.

"We anticipated a strong signal, however, the magnitude of the response surpassed our expectations," stated Blake Paterson, M.D., President and CEO of Alba. "We are particularly excited, as to the best of our knowledge this is the first demonstration of a desired and systemic immunological effect resulting from a physiological event at a mucosal surface."

AT1001 is an antagonist to the zonulin system -- a signaling pathway discovered by Alessio Fasano, M.D., Professor of Pediatrics, Medicine and Physiology at the University of Maryland School of Medicine, and the basis of Alba's extensive intellectual property portfolio.

About Zonulin

Zonulin is a signaling protein that transiently and reversibly opens the tight junctions ("tj") between the cells of epithelial and endothelial tissues such as the intestinal mucosa, blood brain barrier and pulmonary epithelia. Zonulin appears to be involved in many diseases in which leakage occurs via paracellular transport across epithelial and endothelial tight junctions (tj), and thus may play an important potential role in the treatment of autoimmune diseases.

About Celiac Disease

Celiac disease (celiac disease) is a T-cell mediated auto-immune disease that occurs in genetically susceptible individuals and is characterized by small intestinal inflammation, injury and intolerance to gluten. According to the National Institutes of Health, celiac disease affects approximately 3 million Americans, although the diagnosis is rarely made. The only current treatment for celiac disease is complete elimination of gluten from the diet, which results in remission for some patients.

About Alba

Alba Therapeutics Corporation is a privately held biopharmaceutical company based in Baltimore, Maryland. Alba is dedicated to commercializing disease-modifying therapeutics and drug delivery adjuvants based on the zonulin pathway. Alba's lead molecule, AT-1001, is targeted towards the treatment of celiac disease and other auto-immune illnesses.

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I think about the drugs that say they will cure psoriasis etc. But the side effects are heart attack etc. I think I have enough poison drugs in my system with my inhalers which I need. I do not need a pill that allows me to eat something to find out in the end it my destroy an important organ in my body or something else. I am just as happy being gluten-free than taking something which they may find out in 5 years gives you a heart attack, kidney diseased or brain tumor.

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While I completely understand your position on drugs, I still think it is exciting that this drug might change how other autoimmune disorders are treated (i.e., the ones that can't be controlled by diet)!!!!!!!

I think it is still important to conduct research and have break-throughs in medical technology.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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