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'eat What You Want' Pill Caution
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This article refers to the Zonulin research we have all heard so much about. Claire

'EAT WHAT YOU WANT' PILL CAUTION

The pill makes the gut less ’leaky’ Experts advise caution about claims of a pill that could enable people with diabetes and coeliac disease to eat foods that are normally off-limits.

People with coeliac disease need to avoid wheat and diabetics sugary foods to manage their medical conditions.

Researchers at the University of Baltimore say a pill that makes the gut more watertight could allow these patients to eat whatever they want, says a BBC report.

But the early studies were on rats and experts questioned the implications.

MORE @: http://paktribune.com/news/index.php?id=136585

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I think I would put that pill down to the "If it sounds too good to be true, it probably is" file.

I sure wouldn't trust my health to any pill that hasn't had at least five or ten years of testing.

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I don't see how that would be good in any way shape or form. I can only imagine the side effects and long term effects of a more "watertight" intestine. Besides, if you have an autoimmune disorder, how would that stop the reaction? It doesn't make any sense to me.

Aren't there more important things to research than a get-out-of-jail-free card for diabetics and celiacs? It's not a cure, it's like lactaid or something. Only worse. Ephedrine.

Boo.

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Every drug has side effects. What will they be for this one? How much worse than celiac will they be? Why should I pay a lot of money for a pill, when I can control the problem by watching what I eat? And, as Chelse said, how would it stop the reaction? Thanks, but no thanks. This pill is not for me.

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I would never touch this pill. For one thing I presented for years with the neurological symptoms, over 30, before the gut problems hit. Gluten is also absorbed by the mucus membranes, the reason many countries do a rectal challange and biopsy, will this pill prevent the mucosal lining of the mouth, esophagus and stomach and rectum from absorbing? Will it only relieve the gut symptoms? Why does our society think we need a pill anyway? Just stop putting this toxic substance in everything, it's not like there are not alternitives, after all.

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if this drug, with time and testing, proves itself to really work and be safe---i'd jump at the chance to get it for my kids!!

christine

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Chrissy, the problem is, that many drugs the FDA considered to be perfectly safe for years were anything but safe, in fact, in many cases, they were killing people. I don't think ANY pills are completely safe, they all have side effects. If you have an illness that would kill you unless you take a certain drug, then the side effects are unavoidable, and you would take the drug anyway, of course. But Celiac disease would only (possibly) kill you if you eat gluten containing foods. There are many foods that are naturally gluten free, and more and more food is available that mimics 'normal' food, that is gluten free also. By the time your kids are grown, it will likely even be easier to find gluten free foods than it is now.

Personally, I'd rather stick to a diet that is sure to have no side effects, unless you want to consider being healthy a side effect! ;)

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I think I would ralther stick to the diet I take enough pills as it is already :)

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I'd take it only before trying foods that hadn't been prepared by me or had the potential to make me react only because I am so sensitive (no gluten free foods unless they are processed in a dedicated facility). I would however NOT opt to take it if it were an every day thing. At least not until it had been around for awhile and I definitely would still stay gluten-free.

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I would not take it so I could eat a "normal" diet that contained gluten. I would consider it, however, for situations where I could be accidently glutened thru CC. Even then, it would depend on what the side effects were, and anything else I would learn about it.

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If that were the case, I still probably wouldn't take it.

The gluten-free diet keeps my weight pretty stable and my health good...

If I could have all the "gluten stuff" again, I would gain 30 pounds in the first month -- haha

Seriously...

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In my opinion its impossible for me to say I will or I won't. I take a wait and see attitude with this, however I travel all the time, a few times a month at least and I'd welcome something that I could take occasionally when I'm forced to eat in restaurants I'm not sure of. There have been a few times I've gotten gluten this way and I'm sick for a long time, really badly for a week and a funky stomach for 2 weeks. So if it was safe and if it worked I might use it for a stop gap measure.

After reading about wheat and how much its changed over 1000's of years (it in no way resembles the plant it use to be) I honestly don't feel its good for anyone. I'm happy with my celiac diet I eat much healthier then I ever did before. But again, if I could use something here and there it would be nice.

I personally think that "soon" medical researchers will learn how to "turn off" our celiac gene. the advances being made in gene research has the potential to fix us. Now the question is: What does soon mean? I don't think it means next year or even 5 years from now, but I do believe its in my lifetime (I'm 51).

Best, Susan

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I would not take it so I could eat a "normal" diet that contained gluten. I would consider it, however, for situations where I could be accidently glutened thru CC. Even then, it would depend on what the side effects were, and anything else I would learn about it.

Exactly.. I would still eat gluten-free, but if wanted to go out to eat ANYPLACE it be nice to have some chance at protection.

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I heard Dr. Paterson, the CEO of Alba Therapeutics, speak at a GIG group this past week.

In terms of side effects---he said that study participants experienced little to no side effects. He said participants who had the placebo actually had a higher rate of side effects.

In terms of the leaky guy, etc.....it was fascinating to hear him talk about it. I had never fully understood it until I heard him explain it and show pictures. (the pictures probably helped---but they have some on their website that are helpful). I'll try to explain how he presented it.

We have cells that act as barriers. Previously, researchers thought that the connectors between the cells were more like permanent fences, not letting anything through. Based on research by Dr. Fassano at the University of Maryland, they discovered that they are not fences, but more like gates that can open and close. Dr. Fassano identified "zonulin" which they believe is the "gate" opener and closer. Increased zonulin leads to the opening of the gates. In particular, research done by Dr. Fassano has found that Celiac patients have higher levels of zonulin, which "opens" the barriers. When these gates are opened, the gluten gets through. For people with Celiac, then the autoimmune response occurs.

The purpose of the AT-1001 is to stop the overexpression of zonulin, which in effect, would keep the gates closed, therefore not allowing gluten to permeate the gut, which would prevent the autoimmune reaction from ever occurring. The press release is being issued Monday that states that Phase 1 of the actual testing (on non Celiacs and Celiacs) was successful. It prevented the autoimmune reaction from happening. Their hypothesis was supported.

He believes that the leaky gut/zonulin is a key, if not the key, component of many other autoimmune disorders, including Type 1 diabetes, and potentially Rheumatoid Arthritis and MS (and others). Increased levels of zonulin have been found in Type 1 Diabetes patients, as well.

The pill would be taken like a lactaid---with/before meals that may/do contain gluten (as opposed to popping one each morning.)

Hope this helps shed more light on it.

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Laura- Tthank you! That actually sounds pretty darn hopeful. Think of it as a gluten condom :P .

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Given that zonulin is there for a reason, I think it would still be the sort of thing that I would take only when going out in case of contamination. There are lots of meds designed to 'correct' things in the body that do their job quite well, but because almost everything in the human body is a multitasker, the drugs have unexpected consequences as well. I get a lot of those, and get tired of them ;-)

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laura----i re-read the original article that was posted-----it referred to the pill helping people that are "prone" to celiac or diabetes. i am wondering if that was referring to people who have the genetic disposition, without already having the disease. did he indicate if it would be in the best interest of these people to also use this drug to avoid the disease from being turned on in the first place?

christine

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Laura- Tthank you! That actually sounds pretty darn hopeful. Think of it as a gluten condom :P .

:lol::lol::lol::lol:

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Chrissy--From what he spoke about at the meeting, this drug is designed for diagnosed Celiacs (i.e., not gluten intolerant, gluten sensitive, only Celiacs). He did not address the role of of this drug in people who might be at a higher risk (those with the gene, family history, etc.) I also do not know if this exact pill will work for other auto-immune disorders, or if it more of the idea of how it would work but it needs to be tweaked?

The other thing is that Celiacs do not have to take the drug, obviously...but that it would be taken like a lactaid (when one wants to eat gluten or there is a risk of cc).

Basically, the way he presented it, the way they are approaching this....Celiac is just a stepping stone to potentially understanding many other autoimmune disorders.

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that could really simplify things for celiacs (after i just started a thread about it not being as hard as people think LOL!!) you could just carry it in your purse for those times when your choices are limited or questionable.

christine

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I was told that celiac is caused by a lack of a specific digestive enzyme, and that the resulting reaction is what causes the intestinal wall to be super-permeable. Stopping the permeability of the intestinal wall is not going to stop the celiac reaction. I will need to see a WHOLE LOT more research on this before I will consider such a pill to be viable.

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Dessa, I think that there are various theories out there right now about what causes Celiac, hence, the various angles that research is taking. I believe there is research looking at the enzymes as well.

"Stopping the permeability of the intestinal wall is not going to stop the celiac reaction." Although the research on zonulin is in its early stages, the results of the Phase 1 testing say that it does stop the celiac reaction from occurring, according to Dr. Fassano and Dr. Paterson. From what Dr. Paterson said, this is a new way to not only look at Celiac, but other autoimmune disorders. He showed us slides of Celiacs (untreated, with blunted villi) vs. slides of normal villi, that were "stained" to show the zonulin....which was markedly higher in Celiacs. AT-1001, based in INITIAL studies, stopped the overexpression of zonulin, hence keeping the "gates"/tight junctions closed....therefore not letting gluten pass, preventing the autoimmune cells from attacking it.

I think that one of his reasons for coming to speak at this GIG meeting was to begin to provide Celiacs with understandable information, based on their theory of Celiac and autoimmune disorders. He said it will be 2-5 years before a drug is available, so hopefully in that time, their studies will continue to support this, and information will be made available so that we can all make our individual decisions. I thought it was really interesting that Dr. Paterson's father has Celiac, and both Dr. Paterson and Dr. Fasano's wives have autoimmune disorders. I think that it is potentially pretty cool that research on Celiac might open doors to change the way autoimmune disorders are studied and treated.

Whatever the cause/reason for the Celiac reaction, I am encouraged by the research that I saw!

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Did they give any time frame for future testing/etc?

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I'm just glad that there's research going on! That is something to be very optimistic about. I think many people are hesitant because we've all had some bad experiences with doctors, medications, etc. (some of us worse than others) but at least someone is looking at what is going on and maybe ways to stop it.

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I'm just glad that there's research going on! That is something to be very optimistic about. I think many people are hesitant because we've all had some bad experiences with doctors, medications, etc. (some of us worse than others) but at least someone is looking at what is going on and maybe ways to stop it.

I completely agree.

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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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