Judy haight 2009-05-31 16:48:47
Just curious …
Did anyone else here catch the news reports for a potential zonulin
blocker that might be on the market by the end of next year that might
make it possible for us to eat gluten again?
Dr. Fasano’s group in Maryland has been doing the research.
Apparently in celiac disease and MS and juvenile diabetes, there is a
substance called zonulin that is present in greater amounts than is
normal. When high amounts of zonulin are present, then the space
between the cells in the intestines increases resulting in leaky gut.
So the hope is that by blocking production of zonulin, leaky gut would
no longer occur. Apparently they are hoping to make a pill or
something that a person could take about 20 minutes before eating.
According to the article I read, they finished the rat trials and are
starting human trials next.
How would you all feel about a pill that let you eat gluten again?
Would you trust it? What if you had to be diagnosed to get it? Would
you feel like paying for it if your insurance didn’t cover it? We’ve
talked this over at home and generally feel that it might be useful on
the rare occasions that we dine out, just to protect ourselves, but
we’re happy enough to avoid gluten otherwise.
I googled this and came up with some links in case anyone wants to
Sarah 2009-05-31 16:49:03
I saw that article. I’m ambivalent about the availability of such a pill.
I think it’s likely that if this pill becomes available, most doctors (at
least in the United States) will summarily prescribe the drug for their
newly diagnosed celiac patients without discussing the gluten free diet as a
viable option. After all, isn’t it the birthright of every American to shove
anything indiscriminately down his piehole and take a pill to counteract the
symptoms that arise from eating toxic food? The prospect of going gluten
free for life is overwhelming initially, so I think the option of taking a
pill before meals will be seductive for a lot of people who are newly
I feel fortunate to have adjusted to a gf diet before this pill hits the
market. Personally, I’m skeptical that the drug regimen described in this
article will actually promote health in the patient. But 2 years ago if a
drug had been presented to me as an option for symptom suppression I
probably would have jumped at it.
At present, celiacs who take their condition seriously accept the zero
tolerance policy regarding gluten in their diet and thus present a united
front to food manufacturers. I believe that the introduction of a drug to
mitigate or eliminate symptoms of the disease will spit the celiac community
into two camps – those who are willing to take a pill and those who are not.
I might be willing to take it for travel or special eating out occasions,
but probably not before every meal. I’d still like to have gf options
My fear is that the availability of a “cure” will diminish the availablility
of gluten free products for people who don’t want to take the drug. In other
words, instead of more gluten free products available in stores and by mail
order, instead of more restaurants willing to provide gf menu options, I
fear that the bottom will fall out of the gluten free market.
It’s easy to see why pharmaceutical companies would be interested in this
type of drug research in light of the recent study showing rates of celiac
orders of magnitude higher than previously thought. I’m sure the executives
are starting with the assumption that everyone diagnosed with celiac will
want the drug, and at 1 in 133 Americans times 2-3 meals a day (plus
snacks?!) times 20 to 70 years of remaining life span….$$cha-ching! AND
it’s purported to treat diabetes. That’s a pharmaceutical company’s wet
Right now you have to club your physician over the head with to get a
stinking blood test, but when(if) this drug hits the market, look for
aggressive advertising promoting screening for celiac disease.
Home is where the food is.
Emma thackery 2009-06-04 18:12:15
I’ve been keeping my eye on that too but I’m not sure what to make of
it. I’d be concerned about long-term consequences, especially given all
the drugs they’ve had to take off the market lately due to failure to
adequately test for or release data about potential long-term hazards.
That said, I am truly ever-hopeful. There are a couple foods I really
miss that I’d love to have every long while and then. And yes,
insurance for dining out, sounds good too.
Emma thackery 2009-06-04 18:12:37
Darn good point. All most doctors do, except surgeons of course, is
shove pills at you for just about anything.
O** what a frightening thought! But a very realistic one I think.
You are right on target. Pretty scary methinks. And following your
line of (good) reasoning, it gets even worse. It could end up like the
ritalin/prozac debacle where parents were forced to give their children
untested-on-kids drugs to satisfy teachers who want only zombies in
their classes. Instead, maybe the insurance companies, soon to be run
by the pharmaceutical companies just like our government (heh) could
demand you take the drug or forgo any future medical payouts for any
conditions they will say arise from the Celiac. An even worse scenario
involves the wheat industry, which already spends gazillions condemning
the low-carb diet and lobbying congress against food labeling, investing
heavily in development of this new “drug”.
Sarah 2009-06-04 18:12:52
of course, there will still be that constituency of the wheat-allergic
distinct from the celiac community who will require wheat free products. I
don’t know if their requirement for “wheat free” is as stringent as for
celiac. And some of the “wheat free” products have malt added for flavor.
Karen 2009-06-04 18:13:32
Am I missing something? Blocking the symptoms doesn’t mean the damage to
the villi isn’t taking place. Since I _was_ an asymptotic Celiac, it was
the nutritional deficiencies that brought it to attention. I can use an
antodiarrheal to manage exposure symptoms now but I still hate the way I
feel when I can’t absorb B-12, folic acid, iron, calcium etc.
Emma thackery 2009-06-04 18:13:59
The pills are allegedly supposed to prevent reactions entirely,
preventing any damage at all.
Judy haight 2009-06-04 18:14:03
Everyone has made a lot of good points! I wonder whether it will be
available over-the-counter, like Lactaid, or by prescription only.
We’ll have to wait and see how it works and how test subjects (not
me!) accept it …
It’s interesting that Lactaid has been on the market for a long time,
but the section of my big supermarket that has grown the most in the
last handful of years is the alternative milk section (soy milk, rice
milk, nut milk). It used to be nearly invisible but now between
refrigerator space and regular shelf space, I think it’s bigger than
the dairy milk section.
If pills for gluten intolerance work as well as Lactaid, we won’t have
to worry too much about losing GF products 🙂
Emma thackery 2009-06-04 18:14:09
Lactaid really sucks. Before I knew I had Celiac, and thought I was
just lactose intolerant, I tried every lactase enzyme supplement known
to humankind. The only one worth a d*** was made by Nature’s Way
(“Lactase”)— by far, the highest FCC units and also marketed in a
capsule form which is great if you have to swallow 5-7 of them like I
But now, my lactose intolerance is almost gone. I still take 2 on the
rare occasion I have milk. I plan on reducing that to one in a month or
Sarah 2009-06-04 18:14:12
As I understand it, these reasearchers are saying that the leaky gut caused
by overproduction of zonulin is responsible for the autoimmune response
which then damages the gut. But in the first link that Judy included
(http://www.umm.edu/news/releases/zonulin.html) there is this:
“Patients with active celiac disease showed higher levels of zonulin and
anti-zonulin antibodies compared to non-celiac patients and patients in
remission, who were eating a gluten-free diet.” So basically when gluten is
removed from a celiac’s diet, the overproduction of zonulin stops, leaky gut
goes away, and the person gets better. We’ve all lived it. It sounds to
me like this pill blocks the zonulin action, but it doesn’t actually stop
the overproduction of zonulin which will take place when the celiac once
again ingests gluten.
Does that not indicate that the celiac’s body is still reacting to gluten?
Maybe you don’t get the immune response because the gluten is retained in
the gut, but something is going on. Maybe overproduction of zonulin isn’t
the only thing that happens.
Also, this research makes me wonder about people who technically have a
negative blood panel because their anitbody levels are below the threshold
for celiac diagnosis. Still, they are producing antibodies for something
that, according to the article, shouldn’t be floating around outside the
intestines. Might they not also have a leaky gut that needs to be
Home is where the food is.
Emma thackery 2009-06-04 18:14:26
I thought the pills were supposed to reduce the production of zonulin
thereby mitigating the leaky gut. But maybe i misunderstood.
Deirdre saoirs 2009-06-04 18:14:30
It’s not yet fully understood whether the zonulin is the source of a
celiac reaction or the result. Human trials will help tell. It may also
be that not all celiacs will have the same result (e.g. there may be
enough variants of celiac disease that a zonulin inhibitor will treat
some, but not all, celiacs).
Since I have other things that zonulin affects, I’ll be taking the
inhibitor when it becomes available.
Reincarnated 2009-06-04 18:14:39
Why ‘not me’?
I find it incredulous that many people are not prepared to take part
in trials for medications such as these but are willing to use them
when (if) they become available.
I would rather go through a period of discomfort if I had a better
than even chance of helping develop a product or medication that
could, in the future, help me, my family and others overcome the
problems associated with whatever it is the product or medication is
attempting to control or eliminate.
Judy haight 2009-06-04 18:15:00
A good honest question like that deserves a good, honest answer.
After two and a half years of being GF, my indigestion has not settled
down. Both my companion and I seem to have mild sensitivity to grains
generally, not just gluten-containing grains. We are both quite
sensitive to gluten grains and have moderate issues with dairy along
with other allergies and chemical sensitivities. At other times in
life, I’d have been willing to be the test subject. At this point,
I’m willing to let someone else be first. Although going GF brought
about a thousand-fold improvement in my health and well-being, I’m
still having issues and wouldn’t want to be tested on (and might not
be a good test candidate) right now. Hope that makes sense.
Reincarnated 2009-06-04 18:15:19
Sense – yes it does and thank you for answering. Originally I eflt
the same way as you but, after hearing and being involved in CD and a
few other genetically transmitted health problems, I decdided that my
‘discomfort’ for a short period (I guess I call a short period a year
something to help alleviate the problem, was found and made available.
Again – thanks for answering.
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Mombu 2009-06-04 18:17:05
Though it’s hilarious in any case, there’s also something to be said
for WHY the following cartoon is humorous:
The drug companies don’t put out anything involving research unless
there’s big money in it. And with all the recent problems with
“unintended consequences” of various drugs that were inadequately
tested (or put out without also putting out ALL of the potential side
effects), I’d be highly skeptical.
I’m one of those “unofficial” celiacs whose “best gastroenterologist
in the Riverside/San Bernardino area” did exactly what most others
did, especially back then: diagnosed IBS. Only after going gluten
free for two weeks, followed by my wife’s famous whole wheat bread for
two days, followed by two more weeks of gluten free, then another two
days of whole wheat sandwiches, and then one more round of the same, I
went back for a 6 week check up and presented him with the results of
three trials of two weeks off and two days on gluten. I was
thoroughly unconvinced of the IBS, and pretty certain of CD by that
point. I will never forget his response, as he sat there, somewhat
embarrassed, at his desk: “You know, I just read an article in the New
England Journal of Medicine this week that ….” I was simply
unwilling to spend money for the privilege of swallowing an endoscope
(with all its risks, especially 20 years ago) just to put an official
label on something I couldn’t cure anyway. He reluctantly agreed. I
had stopped his IBS prescription all during the 6 weeks of my on/off
trials, and convinced both him and me of the CD.
With that background, I’m sure not willing to suddenly go on a gluten
challenge, knowing the “results,” just to get qualified for the drug.
I’ve learned to live gluten free rather well now over the past nearly
20 years, and it’ll take some pretty solid evidence and experience
(somebody else’s) before I’d try the drug. Nice idea, but I’m far too
skeptical at this point. I like gluten free far better than I like
the idea of non-Hodgkins lymphoma (among other goodies).
Judy haight 2009-06-04 18:17:24
Love the animation! 🙂 Thanks for sending that, it kind of made my