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How Did They Find Out Celiac's React To Gluten?


Jesse E

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Jesse E Rookie

Hello, I'm looking for studies that conclusively show that celiacs react to gluten (or gliadin) and not just starch.

I'm trying to disprove the hypothesis in Breaking The Vicious Cycle which is that celiacs are reacting to starch and not gluten.

Does anyone know where I can find a study that will disprove this?

Thanks.

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lob6796 Contributor
Hello, I'm looking for studies that conclusively show that celiacs react to gluten (or gliadin) and not just starch.

I'm trying to disprove the hypothesis in Breaking The Vicious Cycle which is that celiacs are reacting to starch and not gluten.

Does anyone know where I can find a study that will disprove this?

Thanks.

I will look for you as I don't know of any off hand. But I will say that there are plenty of people who tested positive through blood work AND biopsy that went 100% gluten free, yet still use things like potato starch, corn starch, etc and after years of use of those starches, their intestines are in great health and symptom free still. I will have to read that "Breaking the Vicious Cycle" sounds like garbage to me.

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Jesse E Rookie
I will look for you as I don't know of any off hand. But I will say that there are plenty of people who tested positive through blood work AND biopsy that went 100% gluten free, yet still use things like potato starch, corn starch, etc and after years of use of those starches, their intestines are in great health and symptom free still. I will have to read that "Breaking the Vicious Cycle" sounds like garbage to me.

Thanks. I have found many personal testimonies as well, but I am looking for a study that shows that it is specifically the gluten and not the starch that causes damage.

This I believe is an exact copy of the chapter in Breaking the Vicious Cycle that I am referring to: Open Original Shared Link

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tarnalberry Community Regular

well, the anti-gliadin antibody is specific for gliadin, the wheat protein. not a starch, and nothing generic.

also, you'll note that all the studies that show reversal of damage on the gluten free diet do *not* imply that the diet the person is eating is free of starch. far from it, in most cases. in fact, I believe <edited to remove wrong information - I had the wrong recollection>. keep looking through pubmed - it's a pretty basic inference out of most of the basic studies on the subject. I'm really not sure how anyone could conclude - given the research that's been done - that it's the starch. :huh:

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ami27 Apprentice

I just read an article which I posted about and it states that during World War II Willem Dicke, a Dutch medical student, figured out the connection. Dicke had been treating a group of chronically ill children whom no diagnosis seemed to fit. He noticed that during the war the children mysteriously recovered. After the war, these same children developed debilitating symptoms once more. He theorized since wheat had been absent from many wartime diets in the Netherlands, the grain might be the cause of the recurring symptoms. He went on to earn his medical degree and demonstrated that the removal of wheat from the diet causes symptoms of celiac disease to disappear.

Ami

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Murph Newbie
I just read an article which I posted about and it states that during World War II Willem Dicke, a Dutch medical student, figured out the connection.

Ami

Yup - Willem Dicke, our hero! Could u imagine dealing w/ this withOUT knowing that wheat/barley/rye glutens were the problem?

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Murph Newbie

Just read the linked-to article and think much of it is ridiculous. At one point she seems to claim corn gluten is as bad for a celiac as wheat gluten. Like she doesn't comprehend that the word gluten is a general term. Fact is, it's a protein fraction of the gluten molecule which causes our problems. For wheat it's the well-known gliadin. In barley gluten, it's hordein and in rye gluten, it's secalinin.

Then there's the claim the Specific Carbo Diet "cures" celiac because it's "truly" gluten-free is nutty too. Any one of us could make up a diet that'll work as long as it excludes wheat/barley/rye. Then we could write articles claiming that the key was the part of the diet where it says to eat only even numbers of grains of rice!

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Jesse E Rookie

Thanks everybody for your help and input.

I'm not very good at looking for studies, but I haven't been able to find anything yet.

The anti-gliadin antibodies are unfortunately not proof that gliadin is causing the problem, it just means that gliadin is leaking through the intestinal wall which happens in leaky gut syndrome (which can be caused by celiac, but also caused by other gastrointestinal problems).

There should be definitive proof somewhere that gluten is the problem right?

What I would really like to see is a study where one group of celiacs ingest pure gluten and another group ingest pure wheat starch without gluten. That would be a very good way to disprove this other theory.

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Murph Newbie
What I would really like to see is a study where one group of celiacs ingest pure gluten and another group ingest pure wheat starch without gluten. That would be a very good way to disprove this other theory.

I don't think we'll be seeing any study like that. My thinking is that it'd be too cost-prohibitive to make the "pure" starch that pure. I'm sure I'd read somewhere that commercial wheat starch always includes some gluten.

Tho for all I know, that study may have been done decades ago. There's no controversy about celiac disease and wheat gluten. Just a misguided section of a chapter in an outdated book.

I even consider myself a scientist (& a skeptic) - tho my profession has been engineering - and I've seen more than enough to believe that the problem is one protein fraction of the gluten - actually not the gluten molecule as is. If this big molecule could pass thru unbroken it wouldn't be a problem. The problem is the gliadin, hordein and secalinin.

The comparable protein fraction in corn gluten, zein, isn't a problem and I'm glad for that.

My advice would be to drop it. But if u do find the research you're looking for (or how they discovered that it was the gliadin component) please post the link. I'm a fan of scientific history. One of my faves is how the frets on a lute or other guitar-like instrument helped Galileo formulate and refine the theory that led to the big PR show at the Tower of Pisa.

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Jesse E Rookie
I don't think we'll be seeing any study like that. My thinking is that it'd be too cost-prohibitive to make the "pure" starch that pure. I'm sure I'd read somewhere that commercial wheat starch always includes some gluten.

Yeah that's true. I actually found some studies done with wheat starch and they found that most celiacs do fine eating wheat starch even though they have very small amounts of gluten.

So you might say this means that wheat starch doesn't cause a bad reaction in celiacs which disproves part of this Vicious Cycle theory. Although in these studies the celiacs had already been gluten free for quite some time, so it's possible that it could take a longer study to show any damage.

What these studies didn't show is whether or not pure gluten causes a reaction which is really what I'd like to see.

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tarnalberry Community Regular

pubmed has the studies you're looking for. particularly european ones will address the issue, since they are the ones who more generally use wheat starch processed to remove the gluten. there's another study out there that specifically covers the particular 33-mer of the protein that the immune system recognizes that causes tTg to start the molecular train wreck in our intestines, but I no longer have a link to it.

actually, here's a couple of referenced that I googled real quick:

Open Original Shared Link

Open Original Shared Link (this one discusses why an oral enzyme could help, even though celiac is not inherently an enzyme deficiency the way that lactose intolerance is)

Open Original Shared Link (this one includes a lot of relevant sources that will provide further information)

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Murph Newbie
...whether or not pure gluten causes a reaction which is really what I'd like to see.

Well bring a poncho, cuz some puking may be involved. :)

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Murph Newbie

Yipes those links, and the links from them, are some heavy reading tarnalberry!!

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tarnalberry Community Regular
Yipes those links, and the links from them, are some heavy reading tarnalberry!!

sorry for the technical density, but most summaries do a disservice to the actual study itself. and most of the things you're actually looking for haven't been summarized by an objective source.

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par18 Apprentice
I just read an article which I posted about and it states that during World War II Willem Dicke, a Dutch medical student, figured out the connection. Dicke had been treating a group of chronically ill children whom no diagnosis seemed to fit. He noticed that during the war the children mysteriously recovered. After the war, these same children developed debilitating symptoms once more. He theorized since wheat had been absent from many wartime diets in the Netherlands, the grain might be the cause of the recurring symptoms. He went on to earn his medical degree and demonstrated that the removal of wheat from the diet causes symptoms of celiac disease to disappear.

Ami

This is exactly what Dr. Alessio Fasano said in a talk he gave last summer that I attended. It makes perfect sense to me. The grain shortages of WWII were responsible for making the connection between gluten and the "malnourished" condition of people. If I remember the numbers quoted correctly the mortality rate was like 40% before WWII and 40% after WWII and 0% during the war. It was simply a case of process of elimination! My congrats to Mr. Dicke. This brings up an interesting point. Since not a lot of research was necessary to come to this conclusion then why is it taking the average doctor in the United States so long to make this same connection. I noticed on another post more dialog on the research groups in the US working on treatment options other than the gluten free diet. This appears to be the only money that the medical profession "might" expect to make on Celiac diagnosed people at the present time. I think this money could be better spent on education of the doctors and maybe some alternatives to the forbidden grains. Long before prescription drugs and health insurance the average person worldwide had to either figure it out for themselves or I guess they died. In a lot of cases now a person has to get in a really dire condition before they are diagnosed so I guess not a lot of what Dr. Dicke learned was passed on. I think the impact of the drug companies on Celiac diagnosis is that all options which require a prescription drug are tried first and then when none of that helps the last option (which should be one of the first) the diet is finally suggested. This is progress?

Tom

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corinne Apprentice

From my reading of Gottschall's book, the SCD is for those for whom a gluten-free diet alone does not relieve symptoms (p.43). A cure means relief from symptoms, not necessarily that celiac disease disappears. The theory in the celiac chapter suggests that starch may be involved in gluten intolerance, not that it alone is the cause of damage in celiac disease. Various research is presented which indicates that a carbohydrate-gliadin complex may be responsible for the damage as opposed to gliadin alone or that an inability to digest disacharides could initiate sensitivity to gluten. It's true that these results can be debated. However, the SCD, the paleo diet or other no grain, no starch diets do seem to relieve symptoms for some people whose symptoms are not relieved by a gluten-free diet alone. Intolerance to all grains does seem to be present in a very small fraction of those with celiac disease or other diseases such as collagenous colitis. As of yet (and probably in the forseeable future) there are no studies which (in)validate this type of diet. It's worth a try for those individuals who are completely gluten free and still have symptoms.

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Murph Newbie

Re: Specific Carb Diet

It's worth a try for those individuals who are completely gluten free and still have symptoms.

Absolutely. But the thread started w/ the notion that perhaps a celiac's problem wasn't with gluten at all. I think we do all know it IS the gluten/gliadin.

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Jesse E Rookie

I know I'm being quite a skeptic, but how do we really know it's the gluten? I haven't been able to find a single study that has shown that in real human subjects, pure gluten when ingested causes the problem.

I do believe the problem is definitely related to wheat and other grains, but I have found no evidence that gluten itself is to blame.

Edit: This study may provide some evidence, but it's hard to tell: Open Original Shared Link

Has anyone bought the full version of this study? What is the 33-mer peptide? Is it gliadin?

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aikiducky Apprentice

I don't have a study for you to quote, but I know that here in Holland, quite often people do a gluten challenge with pure gluten powder.

Sometimes here they do a gluten challenge with small children because sometimes there's some doubt as to whether they have celiac or whether they just reacted to wheat etc. because their intestines weren't "ripe" enough. In those cases, gluten is reintroduced for a while (typically six weeks to three months I think) to see if there's a reaction, antibodies or intestinal damage.

The reason to choose for gluten powder is that the child can continue eating it's old gluten free diet and the powder is just added to a porridge or pancakes or something, and if the diagnosis is confirmed, the parents don't have to explain to a small child why it suddenly could eat normal bread and now can't again. Also that way it's clear that the increase in symptoms is due to gluten and not some other ingredient in bread for example.

Pauliina

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tarnalberry Community Regular
I know I'm being quite a skeptic, but how do we really know it's the gluten? I haven't been able to find a single study that has shown that in real human subjects, pure gluten when ingested causes the problem.

I do believe the problem is definitely related to wheat and other grains, but I have found no evidence that gluten itself is to blame.

Edit: This study may provide some evidence, but it's hard to tell: Open Original Shared Link

Has anyone bought the full version of this study? What is the 33-mer peptide? Is it gliadin?

The full text of the (free) articles (the other three are full text available, iirc) I posted say just that. (That abstract is saying just that, so I'm not sure where the confusion is coming from. What else is it that you're looking for?) Peptide is just a fancy word for part of a protein - it's generic, and more so than gluten. 33-mer is noting that the topic of interest is a 33-amino-acid long chain that is a part of the whole molecule that makes up gliadin. There are both in vivo and in vitro studies using just that protein to illicit the chemical response that is celiac disease.

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corinne Apprentice

Murph - the thread started with the notion of disproving the SCD on the basis that Gottschall states that starch not gluten is the cause of celiac disease. Gottschall's book does not make this statement and the celiac disease chapter in her book is focused on those individuals who do not respond to a gluten-free diet. It states that starch may also be associated with gluten intolerance. We do know that gluten is the problem, but there is some evidence (how strong is debatable) that starches may play an additional role and, in particular, for those who do not respond to the diet. This was the body of my reply, not just that the SCD is worth a try.

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tom Contributor

The title of this thread looks like "How Did They Find Out Celiacs React To Gluten?" to me.

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Jesse E Rookie
The full text of the (free) articles (the other three are full text available, iirc) I posted say just that. (That abstract is saying just that, so I'm not sure where the confusion is coming from. What else is it that you're looking for?) Peptide is just a fancy word for part of a protein - it's generic, and more so than gluten. 33-mer is noting that the topic of interest is a 33-amino-acid long chain that is a part of the whole molecule that makes up gliadin. There are both in vivo and in vitro studies using just that protein to illicit the chemical response that is celiac disease.

The problem with the other 2 studies is that as far as I can tell they are test-tube studies, i.e. they are not studying what happens in a real body.

What I'm mainly interested in is a simple study that shows that celiacs are having bad reactions to pure gluten when they eat it. You'd think there would be a simple study like this...something they used to prove that celiac is caused by gluten right?

I haven't read the full version of the 3rd study, but I'm not really sure it's a study of symptoms.

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Canadian Karen Community Regular

Although this site gives you studies about gluten as it pertains to not only GI and also autism, it should help somewhat:

Open Original Shared Link

Karen

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tom Contributor

My god what's next - the need to taste moon dust yourself before believing it's not made of cheese?

IT's THE GLUTEN!!

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