What's The Difference?

[tom]

Tom,

That's why I refer to that period as the "Stone Age" . There was way too little real knowledge and way too much misinformation about celiac disease at the time. If the knowledge was available, gluten would not have been reintroduced into my diet as a child.

Hehe font and color fun!

Gluten reintro'd for me at age 5.

And I do mean "AT" age 5.

Mom was happy to give me a normal bday cake on my 5th - exactly per Dr's orders.

Was your reintro also at age 5?

[Tim-n-VA]

The aren't the same because celiac is a well defined disease - overly restrictive perhaps (gold standard, etc.) but well defined.

Gluten-intolerance is not well defined. It is commonly used on this board as an umbrella term to cover any negative reaction to gluten.

There are different reactions to gluten that cause the same superficial symptoms but the underlying mechanism is different but the treatment (avoid gluten) is the same.

Since the symptoms and treatment are the same, in many contexts there is no reason to differentiate. However, since the associated problems are different, there are situations where the difference is important.

[Fiddle-Faddle]

I agree that there could be many different things causing one to produce antibodies to gluten. However, if continued eating of gluten leads to damaged villi or other damage to the body with or without the presence of the celiac gene, what are the situations where the difference is important?

(I'm not disagreeing with you, I just need clarification to better understand your point.)

[par18]

I like this thread!! Good discussion of a worthy topic. (Wish I knew more)

I do think it possible. No real evidence, but I can still *think* it until proven otherwise.

"unofficial celiac"?

And like u say further down, 'unseen villi damage' doesn't equal 'no villi damage'.

Soooooo much to be learned about celiac still. Maybe there are yet unnamed similar auto-immune disorders.

Amazes me that it wasn't until the 50s that wheat was connected to celiac, tho the word 'celiac' originated in . .. . .what . .. 350BC??

And Rye wasn't discovered as harmful until at least after the mid-60s. I found out a few days ago that the Dr who dx'd me as celiac (she was european so was more aware of it than US docs back then) told mom to give me rye as one of the wheat replacements!!

I think even more amazing is that little has happened (in the US) in the way of early dectection and treatment since 1952 when Dr. Dicke made the connection between the grain shortages of WWII and improved health of persons suffering Celiac symptoms. One would think in the 50+ years since we could have improved on the average diagnosing rate of 11 years. I think that is about to change. Simple and less expensive methods of testing with blood would be a good start. Also if the medical profession would use diet response (in a controlled enviroment) as a diagnostic tool we might improve early detection. I can understand today why no doctor would be willing to make a diagnosis based on what a patient "tells" him/her they have been eating unless there were some way to confirm. I'm surprised there isn't a facility one could check into (like the Mayo Clinic) in which the person can be put on a supervised diet (with or without gluten) for a certain length of time to study the effects. Based on the effects you can then schedule the blood tests/biopsy (in the appropriate time) to see what changes result. There needs to be some way to determine an "average" time for the progression of gluten sensitivity to gluten intolerance to possible Celiac Disease. Of course a stay at one of these facilities would not be cheap but if volunteers were used for research then that might allow some with early symptoms to participate. Just a thought.

Tom

[Tim-n-VA]

Fiddle-Faddle - I was talking about the difference in IgE, IgA and IgG antibodies as described in the message I copied below (wasn't sure how to quote from a different thread).

The point is that if you are having "true" celiac your health-care professional should be monitoring for other auto-immune problems. If you have a "true" allergy, the risk there is less and if symptoms are mild enough, antihistimines could alleviate symptoms.

ID: Doll

AREA: Celiac Disease - Pre-Diagnosis, Testing & Symptoms

THREAD: What's The Difference Anyway?, Wheat allergy, gluten intolerance, celiacs

DATE: Jul 16 2007, 07:36 PM

Gluten allergy/wheat allergy: An IgE mediated allergic response to gluten. This is like a peanut allergy. You get hives, have trouble breathing, become itchy, your throat swells up, your blood presuure drops, etc. Some people also have diarrhea and vomiting, others do not. A true gluten allergy is not that common, dare I use the term rare.

Celiac Disease: An autoimmune disease that affects just under 1% of the population. In an autoimmune disease the body responds to a trigger, and attacks its own healthy tissue mistakenly. The is always a genetic disposition and environmental trigger needed for an autoimmune disease to develop. In Celiacs, whole gluten particles leak into the "leaky gut" and trigger an abnormal immune response. The body also then attacks the small intestine, much like it would attack a virus. This response is IgG and IgA mediated. These are different antibodies than allergy antibodies.

Note that a person can have *both* a gluten/wheat allergy and Celiac Disease.

"Gluten intolerance": This is a grey are of people who seem to react to gluten but do not have Celiac Disease or an allergy. Some people have Celiac antibodies in their blood, but no intestinal damage yet. Some people call these people "gluten sensitive", but they really have what's called "Latent Celiac Disease". Most people who call themselves gluten sensitive have no abnormal Celiac tests. No one knows why they react to gluten. It could be an enzyme deficiency that you are born with or develop , like lactose intolerance, or something else, like acquired gluten intolerance due to another condition, like having Lyme Disease. Some people also suggest that heavy metals play a role. Another idea is that genetically modified gluten is causing a leaky gut even in those who would otherwise not have the genetics to develop it naturally. These people react to gluten but do not get intestinal damage. Most doctors do not recognize non-Celiac gluten intolerance, so there is little research on the topic.

[Fiddle-Faddle]

Oh, that clarifies things! (Though I disagree with their statement that 1% of the population is affected. That's all that's been diagnosed, but, as you say, it takes 11 years to get diagnosed, so the number of people affected must be substantially higher than 15!)

My only positive bloodwork was the IgG, which was through the roof (64, with a reference range of 5-16) even though I'd been gluten-free for a month and had been on prednisone. Everything else was normal. The dermatologist who had grudgingly ordered the bloodwork insisted that this was normal bloodwork. My endocrinologist said it meant celiac disease, and immediately sent me to a rheumatologist to screen me for other autoimmune disorders. Incidentally, I really am impressed with my endocrinologist--she told me that she is starting to test all diabetic patients for celiac disease.

Anyway, since nobody seems to agree on my diagnosis, and the 2 endoscopies I had for GERD didn't result in a celiac disease diagnosis (they weren't looking for celiac disease, they were more interested in ruling out Barrett's esophagus, so I don't even know if they did a biopsy), I've just been calling myself gluten intolerant, but maybe that's not correct?

??????

[Mango04]

It seems like a lot of people on this board believe that all forms of gluten intolerance will eventually result in villi damage. I'm curious about why people think that. I always thought there were many forms of gluten intolerance and some gluten intolerant people won't ever have villi damage, even if gluten severely damages the body in other ways.

I also think it's possible to have a form of gluten intolerance that really just isn't that severe (but that's not to undermine the severe symptoms some non-celiac gluten intolerant people experience).

Just trying to understand it better myself. It's really confusing

[Jestgar]

Just trying to understand it better myself. It's really confusing

The true answer is: No one knows. It's all just theory at this point.

[tom]

The aren't the same because celiac is a well defined disease - overly restrictive perhaps (gold standard, etc.) but well defined.

Yikes!!!!

"Well-defined"??????!

Far from it, I say.

A well-defined disease is easily dx'd.

Not avg 11 yrs to find.

The very USE of the phrase "gold standard" is an example of an extreme misnomer imho.

Isn't everyone aware of how hit & miss the procedure can be?

The phrase "gold standard" implies not only certainty but also a degree of reliability that just doesn't exist.

I'd reserve the phrase to describe Xrays as the "gold standard" for broken bones!!!!

Researchers are just scratching the SURFACE in understanding celiac.

I wouldn't even bet it'll be "well-defined" in my lifetime.

[tom]

. . . . as described in the message I copied below (wasn't sure how to quote from a different thread).

Ack!! You didn't pick the best of threads to quote from.

I participated in that thread, or maybe only saw same misinformation in another thread, and some things are very wrong in that quote.

For one, they called it Celiacs!!!!

No "S" people!!!!!!

It is Celiac!!!!

But non-trivially, it claims that every celiac has whole gluten molecules getting through the leaky gut!!

I don't have a solid argument against the notion that EVERY celiac even HAS leaky-gut (yet), but I strongly believe the leaky-gut condition is only in longer-term celiac sufferers.

I *do* have a number of facts to dismiss the idea that "whole gluten molecules pass thru the leaky gut" and that THIS is the source of the problems assoc w/ celiac.

1) whole gluten molecules are HUGE! A leaky-gut is quite a health issue WAY before the gaps are anywhere NEAR large enough to allow entire gluten molecules thru.

2) It isn't even the gluten molecule itself that causes a celiac problems! (Relax, I'll elaborate) It's one specific 'protein fraction' of the molecule - in wheat it's gliadin.

Wish I remembered the # better, but a gluten molecule contains ~15-30 different protein fractions.

Only ONE is a problem.

If we could get a gluten molecule that could stay "whole", we'd never be exposed to the real culprit, the gliadin.

3) If leaky-gut were truly present in every celiac, there'd be zero anecdotal evidence of a post-gluten-free celiac feeling great. Leaky-gut has a great many symptoms and complications.

No offense taken I hope, Virginia Tim, but imo you plucked the wrong quote.

[happygirl]

I think this site and explanation might be interesting and helpful for some:

Open Original Shared Link

"Celiac disease (

[tom]

It seems like a lot of people on this board believe that all forms of gluten intolerance will eventually result in villi damage. I'm curious about why people think that.

Me too.

[tom]

Certainly some good info here Laura.

I think this site and explanation might be interesting and helpful for some:

Open Original Shared Link

. . . . . . . . . ..

. . . . . . .A close genetic association: with HLA genes (DQ2 or DQ8),

Don't the researchers admit that 10% (or was it >15%) of biopsy-confirmed celiacs don't have either gene?

Early in the disease, the tight junctions are opened and severe intestinal damage ensues. . . . . .

. . . .. .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 leaky gut is both a cause and a consequence of the disease, facilitating transport of gluten which then triggers an inflammatory process, resulting in tight junction dysfunction ("leak") which can be blocked by tight junction modulators including Alba's lead product candidate, AT-1001."

It says both "early in the disease" leaky-gut starts and later claims it's likely that leaky-gut is a cause? Or a "cause AND a consequence"? How can this be?

And why the heck would an expanded pathway OUT of the intestine be required before "intestinal damage ensues"?

The leaky-gut may be required for a celiac to end up w/ some serious non-GI symptoms like ataxia or peripheral neuropathy but I can't imagine why a leaky-gut's ability to pass thru partially-digested substances should affect whether damage ensues in the area these substances are *leaving*.

I was gluten-free as an infant & toddler and until my 5th bday.

I'm pretty darn sure that if gluten had never been re-introduced to my diet (meaning if the Docs in the 60s knew what they know now), I'd have never developed leaky-gut.

I was relatively healthy and quite active for 35 yrs.

Lastly, let's not forget that in the end, this article at Alba Therpeutics is a sales pitch, tho it doesn't become obvious until the last few paragraphs.

It'd be great if AT-1001 works, tho it may only correct leaky-gut and not celiac.

Last I read, the research was more than a year behind schedule, as a stage of trials originally scheduled for Dec '05, I believe, may just now be in the opening phases.

[7-cody]

The true answer is: No one knows. It's all just theory at this point.

Yes that's true... people say it's amazing how much we know nowadays. I say it's amazing how much we don't know!

And if you guys don't mind, I need to throw in a quick question... is it possible to be casein intolerant without having milk allergies or casein allergies? they're different things right?

[Mango04]

And if you guys don't mind, I need to throw in a quick question... is it possible to be casein intolerant without having milk allergies or casein allergies? they're different things right?

Yeah, it's possible to be intolerant or sensitive, but not truly allergic.

[7-cody]

Yeah, it's possible to be intolerant or sensitive, but not truly allergic.

Thanks for the quick response! I hate to keep going off-topic, but what's the difference between intolerant and allergic? isn't being casein intolerant w/out being allergic enough for brain fog, constipation, etc?

[Jestgar]

Thanks for the quick response! I hate to keep going off-topic, but what's the difference between intolerant and allergic?

Your body responds with different antibodies. Allergy is IgE. Intolerance is IgG/IgA (and some IgM).

In terms of how you treat them, it's the same - avoidance.

[7-cody]

Your body responds with different antibodies. Allergy is IgE. Intolerance is IgG/IgA (and some IgM).

In terms of how you treat them, it's the same - avoidance.

I see, but the symptoms are different aren't they?

[happygirl]

Certainly some good info here Laura.

Don't the researchers admit that 10% (or was it >15%) of biopsy-confirmed celiacs don't have either gene?

Lastly, let's not forget that in the end, this article at Alba Therpeutics is a sales pitch, tho it doesn't become obvious until the last few paragraphs.

Last I read, the research was more than a year behind schedule, as a stage of trials originally scheduled for Dec '05, I believe, may just now be in the opening phases.

I'm not feeling great today, so this will be rather short.

I've read from Dr. Fasano and Dr. Green that the vast majority have the gene. The numbers I have read are 1-5%.

I posted this from Alba, not because its a sales pitch, but because its on their page as their explanation. Dr. Alessio Fasano (Open Original Shared Link) published his results on zonulin, etc., and then formed Alba, separate from his Celiac Disease Center (a university clinic), to facilitate this research. I've heard the other co-founder speak, seen his slides, and the theory is fascinating. If you are interested, it would be worth reading some of his journal articles (the link I posted was in a very easy, concise way of understanding). This also relates to type 1 diabetes as well.

Also, I have worked in research labs for 5 years (although not drug trials), but large, federally funded (NIH, NSF, etc), and I have yet to see a large study that is on time. And those were without medicine. I contacted them to be involved in their study (Fall 05) but could not participate, and they have completed trials, etc since that time. So they are in a different phase than they were then.

[Tim-n-VA]

Ack!! You didn't pick the best of threads to quote from.

I participated in that thread, or maybe only saw same misinformation in another thread, and some things are very wrong in that quote.

For one, they called it Celiacs!!!!

No "S" people!!!!!!

It is Celiac!!!!

...

No offense taken I hope, Virginia Tim, but imo you plucked the wrong quote.

In that context Celiacs sounds right to me. They are referring to people with Celiac. If I am a Celiac (don't like to use the term that way), my friend with Celiac and I are Celiacs.

With regard to the rest of the quote, I wouldn't try to defend it. I was just trying to quickly find a quote that talks about the IgA, IgE, IgG antibodies and that was the first I found.

The earlier post where I said Celiac is well-defined is true in the sense there is a widely accepted test procedure for the mainstream medical community. I did say that it was perhaps overly restrictive. I have not seen anything close to a consistent usage of gluten-intolerance - it seems to be a catch-all term used for a wide variety of things.

My main point remains that celiac and gluten-intolerance are terms where the distinction isn't important in day to day living but there are situations where it is important to know exactly how the body is reacting at more than a symptomatic level.

[miles2go]

OMG I saw that Nova w/ epigenomes!! So completely fascinating.

I hadn't heard of epigenetics at all.

I did bring up the topic in another thread, where post-embryonic differentiation got a passing mention.

So, these epigenomes turning genes Off, does have everything to w/ celiac and cases where just one identical twin gets it, correct?

Margaret,

Great to hear you're regaining health. (Or have regained it all? Can't tell.)

Yo, howdy Tom,

From my understanding of the Nova program, yes, the epigenomes turning genes off does have everything to do with celiac (possibly) and also is/could be why a cloned calico cat may look different from its parent clone, but I have to admit laughing at "hard science" modelling itself after computer science at one point. No offense to any of the scientists out there, I'm a printmaker and so get a kick when creativity, pressure, acid and ionic bonds come together - it just tickles my funny bone. The wikipedia article on the subject did some decent orientation for me as I came across the term in both genetics and psychology classes in college. I think I've also heard my retired chemistry prof dad use it...

I think I'm recalling correctly that my bloodwork came back with both high IgE and IgM levels and so the histone relation is very interesting at this point. What was the subject and folder of the thread (if you don't mind and can find it easily) where you posted about epigenetics? I'd really like to read it, I've been offline for a bit. I also want to print out this thread when I'm on break and at work tomorrow, as I'm on the dino computer now without a printer. Such a great topic with so much interesting input.

This forum continues to rule.

I am feeling really great these days, thanks...looking forward to ragweed season...

Margaret

[tom]

The wikipedia article on the subject did some decent orientation for me as I came across the term in both genetics and psychology classes in college.

Gah! I'm in a "badmouth wiki" phase since reading it claim that gliadin is also in rye & barley, in addition to the (hey .333 in baseball is good!) correct wheat.

What was the subject and folder of the thread (if you don't mind and can find it easily) where you posted about epigenetics?

Hoo boy, my post on it was just a grain of sand in an endless beach of misc topics.

It was on what we call the OMG thread, currently 1400+ pages long w/ over 20,000 posts.

Very easy to find in Other Food Intol section or whatever its name is - I'm not entirely positive and surfing on a phone does have disadvantages in quick look-ups.

If anyone gives it a look, please PLEASE don't bother w/ page 1.

Jump to the newest page!!

So much of the early issues talked about have been long solved.

And my epigenomes comment was truly just in passing. No discussion whatsoever.

[miles2go]

Gah! I'm in a "badmouth wiki" phase since reading it claim that gliadin is also in rye & barley, in addition to the (hey .333 in baseball is good!) correct wheat.

Hoo boy, my post on it was just a grain of sand in an endless beach of misc topics.

It was on what we call the OMG thread, currently 1400+ pages long w/ over 20,000 posts.

Very easy to find in Other Food Intol section or whatever its name is - I'm not entirely positive and surfing on a phone does have disadvantages in quick look-ups.

If anyone gives it a look, please PLEASE don't bother w/ page 1.

Jump to the newest page!!

So much of the early issues talked about have been long solved.

And my epigenomes comment was truly just in passing. No discussion whatsoever.

Thanks, I'll check it out. I still like the wiki, even with the stumps. We should all be contributing to it. (Like I have... )

Margaret

[Guest Doll]

*Disclaimer...this is MY opinion only based on what I know* .....

I personally think that people with positive antibodies (Ttg and EMA) but a negative biopsy DO have Celiac. They either had a false negative biopsy but do have damage, or they have what is called "latent" Celiac (no intestinal damage yet). In the later case, they *likely* will go on to develop intestinal damage without a gluten-free diet. Then again, they may not. We just don't know. Perhaps they have an additional gene that protects them from intestinal damage. Perhaps they lack the full gene set that causes intestinal damage. Perhaps an additional trigger, like a virus, is needed for damage to occur.

I think those with negative antibody tests (EMA, Ttg, Anti-Gliadin, etc. all which are actually quite reliable) and negative biopsies (assuming the results are correct) likely have non-Celiac gluten intolerance. What does this mean? Possibly they have a leaky gut, but lack the genetics for an autoimmune response to gluten (Celiac Disease). On another thread I explained this. From what *I* know, the leaky gut is the point of entry for all the triggers of autoimmune diseases. It doesn't look like gluten is the trigger for all other autoimmune diseases, even though it might be a part of the puzzle by stimulating the immune system. It is very possible to have a leaky gut, let in gluten, have an "allergic like" immune response, but not go on to have intestinal damage. If you lack the genes for other autoimmune diseases, you likely don't have to worry about those either. People who lack the genes for Celiac likely will NOT go on to get intestinal damage. Autoimmune disease is simple in this regard. If you lack the genes for Type 1 diabetes, you will NOT get it, even if you are exposed to the trigger (a virus, etc). That said, if you have non-Celiac (non-autoimmune) gluten intolerance, you likely DO NOT have the genes for autoimmune diseases in general, or for intestinal damage from gluten exposure.

That's not to say you won't be sick as a dog and malnourished if you eat gluten, but if you only have non-Celiac gluten intolerance, I think it is unlikely you will develop any autoimmunity damage without the genes for it.

Possible other causes for non-Celiac gluten intolerance include Lyme Disease (as shown on this board) or possibly an enzyme deficiency or form of unclassified allergy. I'm just guessing here.

I don't think it's gluten that causes the "damage" (other autoimmune diseases, not neurological Celiac symptoms, etc.) in other areas of the body. How do I explain what I mean? You can have other autoimmune diseases and NOT have Celiac. What do all of these diseases share? The leaky gut. The "cause" of autoimmune diseases, where these triggers are let into the small intestine and into the blood stream. So, you have autoimmune thyroid disease but you do NOT have it from gluten or have Celiac. What you do have in common with Celiacs is a leaky gut, which is letting in the trigger for autoimmune thyroid disease (currently unknown, soy has been implicated here). All autoimmune diseases in any form need a leaky gut to occur. But you can have a leaky gut and not have the genetics for Celiac or other autoimmune diseases per se.

Or, in some cases, you may have the genes for other autoimmune diseases but not Celiac. We do know that there is some shared genetic overlap between all autoimmune diseases, so Celiac and Type 1 diabetes for example often run together, but most people will not have both.

That may explain why some people with MS, Type 1 (Juvenile) Diabetes, etc in their family have "gluten intolerance" but not actual Celiac. They likely have a leaky gut and react to gluten ("allergic response"), but will never actually develop Celiac Disease if they lack the genes for it. I do agree that avoiding gluten *may* help decrease the defective immune response in those prone to autoimmunity, but it probably won't *stop* the process entirely. There are other triggers the body is letting in, and we don't know what they are.

I do agree with the idea that if you have multiple autoimmune diseases in your family, and you choose to have kids, your children should be gluten free and casein free from birth if possible. It can't hurt, as long as your child gets proper nutrition. If they develop autoimmune diseases anyway, it is up to you to decide if they should stay on the diet or not.

I agree that we don't have all of the answers, but we know more than we ever did, and the currrent Zonulin theory seems to make the most sense out of all theories I have ever seen, and has potential practical application to boot. I think it would be awesome if we could prevent ALL autoimmune diseases by fixing one of the root causes, the leaky gut. Would help a lot of people. Just my 2 cents.

I asked on another post if anyone here is in the AT-1001 trials....is there anyone here????

[EBsMom]

I personally think that people with positive antibodies (Ttg and EMA) but a negative biopsy DO have Celiac. They either had a false negative biopsy but do have damage, or they have what is called "latent" Celiac (no intestinal damage yet). In the later case, they *likely* will go on to develop intestinal damage without a gluten-free diet. Then again, they may not.

How could someone have elevated Ttg/EMA antibodies without intestinal damage? I thought that's what those tests were indicative of/specific for. Am I wrong about that?

Rho