What's The Difference?

[7-cody]

The topic title says it all!

edit: Aren't they the exact same thing? Doesn't finding out that I have active Antigliadins IGA automatically mean that I'm Celiac? Because if I'm intolerant, then doesn't that make me Celiac?

[Tephie]

I am paraphrasing - taken from the Living Gluten Free for Dummies book.

Gluten Intolerance - Means that that your body doesn't react well to a particular food and you should avoid it. Notice she said should.

Celiac - Is a genetic intolerance to gluten. Triggered by eating gluten, the immune system responds by attacking the gluten molecule, and in so doing, it also attacks your body cells.

There is much more information on this subject in the book. She discussed allergies, gluten intolerance and then Celiac.

Hope this helps! Stephanie

The topic title says it all!

[tom]

To me it's the difference betw a backyard pool and an ocean.

I'll go with Stephanie's GI quote and augment the celiac definition w/ this.

Definite symptoms/conditions

https://www.celiac.com/st_prod.html?p_prodi...-15104373588.a8

Probable symptoms/conditions

https://www.celiac.com/st_prod.html?p_prodi...-15104373588.a8

Celiac will wreak havoc in every system of the body if left unchecked.

[Fiddle-Faddle]

I have a different take on it.

I think that it is a matter of timing and severity.

If you have gluten intolerance (as defined by antibodies to gluten) and continue to eat gluten, you WILL develop celiac in one form or another.

Currently, celiac is officially defined as having damaged villi or DH. I believe that the definition of celiac will eventually be expanded to include IBS, RA, autoimmune thyroid disease, fibromyalgia, diabetes, lupus, certain lymphomas, a subset of the autistic population, a subset of those with neuro issues, and possibly MS (though I think MS also has overlap with mercury poisoning and/or Lyme disease).

Tom, I would say that, if you are producing antibodies to gluten, than GLUTEN will wreak havoc in every system if unchecked, whether or not you have biopsy-confirmed villi damage. (And we all know that the biopsy is hit-or-miss.)

DH is a perfect example. If you have DH, that is considered a firm diagnosis of celiac. But not all DH sufferers have villi damage or even intestinal symptoms.

With celiac, your body does not necessarily target the villi.

[Mickide]

I have been planning making this same post. My sister has a gluten/ wheat intolerance (along with a bunch of other intolerances) but has only had the food sensitivity test. What is the difference in testing? I have only had the Celiac blood panel and biopsy. If she has a gluten/wheat sensitivity is it likely she actually has Celiac? I am asking because she does not modify her diet even though she has the sensitivity (level 4?).

[CarlaB]

Though I agree with Fiddle Faddle, I would say some gluten intolerants are more like pre-celiacs or have the disease affecting other parts of the body (if it can affect both skin and intestines, it's just common sense to think it would affect other areas as well). I think some gluten intolerants have their intolerance due to some other condition that maybe hasn't been discovered yet.

I have a severe bacterial problem due both to Lyme Disease and to an overgrowth of klebsiella and Citrobacter in my intestines. I also don't have necessary beneficial bacteria despite taking massive probiotics. These issues have caused gluten intolerance.

In the beginning I was completely intolerant just like a celiac. In fact, I even looked like a so-called "classic celiac". I was losing weight and got sick off even a crumb of gluten. Enterolab found an IgA reaction to gluten in my intestines, but none was found in my blood.

I believe that if they find an IgA reaction in your blood, that you are likely to be pre-celiac. But, I think the jury is still out on why the reaction can be in your intestines but not your blood ... I think there can be more than one reason for the reaction to be there.

Now that I've been treating my bacterial issues, my gluten intolerance is not nearly as severe. I still eat gluten-free, but don't get sick from minute contamination anymore (haven't gotten sick from eating out in months, though I generally stick to restaurants with a gluten-free menu). I even did a gluten challenge recently that definately showed my sensitivity is lowered.

In the end, for me I think it will be like my other sensitivities (peanut butter and fruit juice) ... I'll probably be able to eat it once in a while with no complications. This is very different from how a celiac would handle it. I rarely eat peanut butter or fruit juice, so I expect I will do the same with the gluten ... but this will be after I get these bacterial infection under control (another year or two).

[CarlaB]

I have been planning making this same post. My sister has a gluten/ wheat intolerance (along with a bunch of other intolerances) but has only had the food sensitivity test. What is the difference in testing? I have only had the Celiac blood panel and biopsy. If she has a gluten/wheat sensitivity is it likely she actually has Celiac? I am asking because she does not modify her diet even though she has the sensitivity (level 4?).

Your sister likely had the allergy test. It's a different reaction entirely than an immune reaction. She should have the celiac panel before she goes gluten-free since you have celiac ... she has a chance of having it, too.

[lonewolf]

I think there's too much unknown about celiac and gluten sensitivity for anyone to give a definitive answer. I have my opinion, based on personal experience rather than science.

I think that some people are sensitive to gluten as Carla explained. It can come from things like Lyme Disease, a leaky gut due to overuse of antibiotics or other medical conditions. As Carla explained, this can get slightly better over time. I was told 11 years ago that I was temporarily sensitive to gluten because of antibiotic overuse, but it didn't prove true. Looking back, I realize that I had many symptoms of Celiac long before I ever took a single antibiotic, so something else must have been causing my sensitivity to gluten. (A side note - several other intolerances or sensitivities have gone away over the years as I've gotten healthier and avoided those foods. Things like beans, nightshade vegetables, bananas, garlic, corn and a few other minor foods.)

There are some people who have many of the symptoms of Celiac, but for one reason or another can't be diagnosed. They have a negative biopsy or negative bloodwork or are told that they don't have the "right" genes. I don't have Dq2 or Dq8, so I was told I couldn't have Celiac. I have several autoimmune problems (thyroid, arthritis, kidney problems, psoriasis) that are linked with Celiac. ALL have either gone away or improved dramatically since going gluten-free. My doctor agrees that I need to be gluten-free, but won't give me a diagnosis based on dietary response alone. (This is actually fine with me.) So I am "only" gluten intolerant.

I don't agree with the "pool vs. ocean" theory. I know from my personal experience how sick I get if I eat gluten. Maybe I wouldn't be one of the "classic" Celiacs who looks emaciated (I'm a bit overweight), but I would probably be in kidney failure either now or in the near future and be confined to a wheelchair with a horrifying outbreak of psoriasis all the time. That is an "ocean" of a problem to me.

[lonewolf]

I think there's too much unknown about celiac and gluten sensitivity for anyone to give a definitive answer. I have my opinion, based on personal experience rather than science.

I think that some people are sensitive to gluten as Carla explained. It can come from things like Lyme Disease, a leaky gut due to overuse of antibiotics or other medical conditions. As Carla explained, this can get slightly better over time. I was told 11 years ago that I was temporarily sensitive to gluten because of antibiotic overuse, but it didn't prove true. Looking back, I realize that I had many symptoms of Celiac long before I ever took a single antibiotic, so something else must have been causing my sensitivity to gluten. (A side note - several other intolerances or sensitivities have gone away over the years as I've gotten healthier and avoided those foods. Things like beans, nightshade vegetables, bananas, garlic, corn and a few other minor foods.)

There are some people who have many of the symptoms of Celiac, but for one reason or another can't be diagnosed. They have a negative biopsy or negative bloodwork or are told that they don't have the "right" genes. I don't have Dq2 or Dq8, so I was told I couldn't have Celiac. I have several autoimmune problems (thyroid, arthritis, kidney problems, psoriasis) that are linked with Celiac. ALL have either gone away or improved dramatically since going gluten-free. My doctor agrees that I need to be gluten-free, but won't give me a diagnosis based on dietary response alone. (This is actually fine with me.) So I am "only" gluten intolerant.

I don't agree with the "pool vs. ocean" theory. I know from my personal experience how sick I get if I eat gluten. Maybe I wouldn't be one of the "classic" Celiacs who looks emaciated (I'm a bit overweight), but I would probably be in kidney failure either now or in the near future and be confined to a wheelchair with a horrifying outbreak of psoriasis all the time. That is an "ocean" of a problem to me.

[confusedks]

The way my doctor explained it to me was that Celiac causes other problems that go away with gluten free diet. For example I was really anemic and after many attempts to get rid of it, the only thing that actually worked was going gluten free. If I had a gluten intolerance, he said I wouldn't have had such severe anemia that went away with gluten free.

Kassandra

[tom]

If you have gluten intolerance (as defined by antibodies to gluten) and continue to eat gluten, you WILL develop celiac in one form or another.

I never looked into GI much. Is it really defined by the presence of anti-bodies?

At 1st glance, it seems like a more severe definition than what I've inferred in my limited exposure to GI articles.

I'd think there's enough variation in conditions that some GI folks have no celiac capability.

Aren't some ppl allergic to peanuts w/out it being a death-risk? (Maybe terrible analogy, I know)

Tom, I would say that, if you are producing antibodies to gluten, than GLUTEN will wreak havoc in every system if unchecked,

This is probably just semantics, but I'll still say "celiac wreaks havoc".

Tho nothing happens w/out the match, it's the stick of TNT that does the damage.

[tom]

. . . . So I am "only" gluten intolerant.

I don't agree with the "pool vs. ocean" theory. I know from my personal experience how sick I get if I eat gluten. Maybe I wouldn't be one of the "classic" Celiacs who looks emaciated (I'm a bit overweight), but I would probably be in kidney failure either now or in the near future and be confined to a wheelchair with a horrifying outbreak of psoriasis all the time. That is an "ocean" of a problem to me.

That's an ocean of a problem for anyone!

I'd still say that while you're 'officially'

""only" gluten intolerant."

that there's most likely more going on.

Of course I agree that there can be a vast spectrum of GI situations.

As part of that, aren't some GI ppl's situations analogous to the lactose-intolerant who just don't produce the proper enzyme?

[Fiddle-Faddle]

The thing is, the official "gold standard" (don't we hate that phrase by now?) of diagnosis of celiac is either damaged villi or confirmed DH. That can exclude bloodwork, symptoms, dietary response, even genetics--which is just insane.

Getting back to Tom's analogy with peanut allergy (it's a good analogy!), it's like refusing to diagnose the peanut allergy until the person has had an anaphylactic reaction. We know that gluten intolerance can--and does--set in place the mechanics that cause villi damage, so who cares what stage of damage you are in if the damage is caused by gluten?

And, as Carla said above, gluten intolerance can itself be caused by different things.

Carla, my question for you would be, did you have villi damage? If you have villi damage, but it's caused by Lyme-induced gluten intolerance, how would that affect "celiac status?" Does that blow up the "once a celiac, always a celiac" theory, since theoretically, once the Lyme is treated, secondary conditions caused by Lyme would resolve, right?

Another question: is it possible to have leaky gut, but NO villi damage?

And Tom, if one does not have villi damage or DH, and therefore no official celiac, but one has all the celiac symptoms, plus other autoimmune damage, such as thyroid or GERD, what is causing the damage?

Getting back to the celiac vs. gluten intolerance, I think some confusion is caused by people thinking that gluten intolerance is a teeny tiny reaction. My understanding is that anyone with classic celiac symptoms, positive bloodwork, but a negative biopsy is termed, "gluten intolerant." This is what I vehemently disagree with. I agree that it's more like being "pre-celiac," or even "celiac-but-the-doctor-missed-the-damage-during-the-biopsy."

Of course, there are always those idiot doctors who assume that, if they haven't managed to blindly pick out a damaged villi, then it's all in your head....

[tom]

The way my doctor explained it to me was that Celiac causes other problems that go away with gluten free diet.

Mostly true, in my mind.

99% of the problems go away, but my bones and teeth are probably never going to get better. At least they stop getting worse!!

(and perhaps some cerebral calcification may remain - not sure whether that reverses)

[CarlaB]

The thing is, the official "gold standard" (don't we hate that phrase by now?) of diagnosis of celiac is either damaged villi or confirmed DH. That can exclude bloodwork, symptoms, dietary response, even genetics--which is just insane.

I think the diagnostic standards are too strict. If someone has positive bloodwork and positive dietary response, I would tend to think that was celiac disease ... or pre-celiac ... meaning permanent gluten-free diet.

As you say, there have to be different stages in the progress of the disease ... you don't wake up one morning with damaged villi.

Carla, my question for you would be, did you have villi damage? If you have villi damage, but it's caused by Lyme-induced gluten intolerance, how would that affect "celiac status?" Does that blow up the "once a celiac, always a celiac" theory, since theoretically, once the Lyme is treated, secondary conditions caused by Lyme would resolve, right?

No, I had no villi damage and negative blood tests. My Enterolab test was IgA 60 and Ttg was high, too, but I can't remember the score.

If Lyme triggers celiac (it can just like any other illness or stress can), then you have celiac ... it was triggered, so it's not a secondary condition ... it's more like a second primary condition.

Gluten is a regular topic on Lyme boards ... some have celiac disease, some are *just* intolerant.

Another question: is it possible to have leaky gut, but NO villi damage?

Yes, leaky gut can be caused by other things than celiac. I was diagnosed with leaky gut ... the doctor didn't do any tests for it though, so I don't know that it was a valid diagnosis ... not that I don't have it, I'm sure I do ... it's just that there was no actual testing for it done by my doctor.

And Tom, if one does not have villi damage or DH, and therefore no official celiac, but one has all the celiac symptoms, plus other autoimmune damage, such as thyroid or GERD, what is causing the damage?

I think there are different types of gluten intolerance ... some people are on their way to developing celiac, some are not.

[Fiddle-Faddle]

I think there are different types of gluten intolerance ... some people are on their way to developing celiac, some are not.

How do you tell which is which?

[CarlaB]

How do you tell which is which?

That's a good question. I think that falls into the category -- we still have so much more to learn!

[tom]

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

Another question: is it possible to have leaky gut, but NO villi damage?

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

And Tom, if one does not have villi damage or DH, and therefore no official celiac, but one has all the celiac symptoms, plus other autoimmune damage, such as thyroid or GERD, what is causing the damage?

"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!!

[mamaw]

fiddle-faddle & Carla

I'm with you two on this issue... way to go Girls!!!

[miles2go]

And then there's epigenetics...

I was one of those diagnosed with high atopy to various things including wheat being rated a 4, with all the classic symptoms of celiac and then a positive dietary response. I can still consume great amounts of iron without the usual "C"...

I have been glutened by the dental hygienist after being gluten-free for 1 1/2 years. That seemed kind of indicative, as it wasn't really a buffet that I was looking forward to.

I also have lawyers battling me, reminder, battling me, in a worker's compensation case who are more willing to pin my former workplace problems on celiac being brought on by allergies because that is the doctors' opinions.

That also seems a little indicative. I'm only 24+ hours off of the Nova program on PBS that rekindled my second-hand knowledge in epigenetics, but I would like to know more, for my own information. Meanwhile, no amount of money can equate with the health I've regained. Yah.

Great topic, agreed!

Margaret

[little d]

fiddle-faddle & Carla

I'm with you two on this issue... way to go Girls!!!

I agree, a very good post with no arguing

donna

[7-cody]

Uh oh. What have I started?

Anyway... I think my question is pretty much answered now. So from what I gathered, having IGA anitgladins means that I'm intolerant... but I might as well call myself Celiac, because even if I'm not, I will be... or somehtin glike that =p

[tom]

And then there's epigenetics...

. . . I'm only 24+ hours off of the Nova program on PBS that rekindled my second-hand knowledge in epigenetics, but I would like to know more, for my own information.

Meanwhile, no amount of money can equate with the health I've regained. Yah.

Great topic, agreed!

Margaret

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.)

[Ed-G]

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!!

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.

BTW, brain cells ane unable to reproduce after they were damaged. The dead ones are covered over with scar tissue, but that's it.

Ed in MD

[Fiddle-Faddle]

Tom,

That's why I refer to that period as the "Stone Age" .

Ed in MD

So we are now in what, the Bronze Age? The Ice Age? Middle Age?