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'eat What You Want' Pill Caution


Claire

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happygirl Collaborator

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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tarnalberry Community Regular

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?

happygirl Collaborator

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.

jerseyangel Proficient

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

happygirl Collaborator

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!

VydorScope Proficient
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

jerseyangel Proficient

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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plantime Contributor

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)

happygirl Collaborator

As requested:

https://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.

Rusla Enthusiast

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.

happygirl Collaborator

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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    • trents
      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
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    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
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