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JenM

All Or Nothing?

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I don't know which one is true but I have heard some of each. My doctor has told me that genetically predisposed people can develop celiac if they have a sensitivity but ignore it...then I see what your doctors have told you so it's quite difficult to know what is true.

So someone without one of the known celiac genes and therefore, not at risk of developing celiac (except in extremely rare cases when they have one of those not yet identified genes), will not be hurt at all by consumption of gluten. If they have gluten intolerance, they may feel bad when they eat certain amounts of gluten, but it will not do any intestinal damage and will not escalate into full celiac.

The other category we're talking about is those who have the gene (gentically predisposed), and have gluten intolerance, but have not actually activated the gene yet. Those people are not damaging their villi unless the gene is triggered, obviously. Of course, the easiest time to trigger it is in that window between birth and about one year--either through introduction to gluten too early or too late, or by not taking the preventative measure of breastfeeding. After that, the trigger is usually surgery, tremendous stress, etc. We can't understand all of the triggers, but other than that, you would require a LOT of gluten to trigger it through overconsumption of gluten--not likely to happen on a regular-gluten diet today, although in the future that could become more of an issue, being that we're adding wheat to more and more foods.

If someone is already predisposed to celiac though I would think it could turn into celiac if they are experiencing symptoms when eating gluten and ignoring it.

They say the main genes are DQ2 and DQ8 however that is only for about 98% of the people.Not all 100% of celiacs have those genes and are confirmed celiacs.

I know Rachel-24 had her results come back with malabsorption and damage..however, she does not have one of the main celiac genes...she could be one of the small # of people that have celiac without one of the major genes.

Or can just gluten intolerance cause damage? Now that would not make sense because the defining point in celiac is the damage that it does.

Now, if a gene test comes back negative then it is not likely it can ever become celiac because there is a link with the genetics but that can not be 100% accurate since a very tiny majority do not have either gene. Unless there is another main celiac gene that they need to be testing for..I believe the small majority that have neither of the main genes have the DQ1 gene...so why isn't that being tested for as a celiac gene.

If they're experiencing symptoms when eating gluten and ignoring it, it could be damaging them if it's celiac. But gluten intolerance, according to what I've heard from the doctors at the celiac center at Columbia, won't escalate into full-blown celiac unless due to an independent trigger (i.e. surgery, traumatic experience/stress).

Re: Rachel-24. Not to undermine the celiac diagnosis, but there's a possibility that blunted villi could have been for a different reason than celiac--probably not her situation, but possible as a general rule. Secondly, it could have been that she had one of those less well known genes that they don't test people for because it is extremely unlikely. Thirdly, if it is in fact this "gluten intolerance" that's causing damage, then the problem is no longer gluten intolerance anymore, since an intolerance by definition does not cause long-term damage (such as lactose intolerance). Then it would have to be something else that looks like gluten intolerance.

It doesn't make sense that making yourself feel bad over and over would not lead to some more serious problems. I don't buy it when people say o it just makes me feel bad but nothing else will happen...I think something worse will happen if you ignore your body...that's just my opinion though.

It's just like lactose intolerance, though. The majority of the population, actually, has some degree of lactose intolerance--just some have it much worse than others. Basically, most of us can't break it down completely, so it has various gross-feeling effects. But it doesn't hurt your intestines or anything. That's basically the definition of an intolerance. Gluten intolerance (when not used synonymously as meaning celiac disease) is the same thing.

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Just wanted to reiterate--not trying to undermine your diagnosis, Rachel--just pointing out a general possibility in similar cases. I just wanted to emphasize that because I don't want to offend you or suggest that you don't have some issue with gluten, be it celiac or something else.

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From what I've learned I believe that even w/out the Celiac gene gluten can cause serious damage to body tissues. Celiac is just one presentation of what gluten can do. There are other gluten sensitivity genes...besides DQ2 and DQ8. From what I understand these other genes present in other ways and *still* cause damage, autoimmune disease, neurological problems, etc.

Therefore, a gluten intolerance w/out DQ2 or DQ8 is not the same as a lactose intolerance. It can and does cause damage. The immune system is still producing antibodies and the result may not be blunted villi but there is damage to the body regardless.

My GI told me he would not rule out Celiac based on not having a main gene. He said there are other genes involved and they have not determined all of the genes yet.

I know there is a very small percentage who have full-blown celiac w/out the genes so it IS possible. But I don't know why they have celiac....did it turn into celiac because they pushed themselves too far like Kaiti suggests? Who knows...but clearly it is possible to not have a gene yet be Celiac.

I dont have my biopsy results yet but they are meaningless since I've been gluten-free for several months beforehand. I don't know if I could be one of those rare cases of celiac disease w/out the gene but I'll likely never find out cuz I don't want to do a gluten challenge.

All I know is I got real sick eating gluten, I had positive IgA antibodies and tTG in my stool (whatever that means). I follow the diet and I'm doing much better and have gained 10 lbs. back.

I dont think it can be compared to lactose intolerance since I was suicidal, bed-ridden, losing lots of weight...along with a huge list of other symptoms that kept me from working and basically having a normal life. I know people with lactose intolerance and they were never sick like that. Its not the same.

I dont think for one minute that all this could have been taking place for 3 years and my body was not being damaged in some way. I couldn't even think clearly and my mind was so messed up I couldnt drive at times...I couldnt remember simple stuff and I was disoriented after eating gluten. *Something* was going on and its not like I'm miracuously healed w/out gluten. Some improvement was dramatic but other stuff is taking longer to heal...if there was no damage done I would be better immediately after eliminating gluten. Arent lactose intolerant people fine after they quit dairy?

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Just wanted to reiterate--not trying to undermine your diagnosis, Rachel--just pointing out a general possibility in similar cases.  I just wanted to emphasize that because I don't want to offend you or suggest that you don't have some issue with gluten, be it celiac or something else.

<{POST_SNAPBACK}>

celiac3270...no offense is taken.

I believe you are extremely knowledgeable in the area of celiac disease. However, I think most of your research involves only classic cases of Celiac...such as your own.

I think there is much more to be learned about gluten sensitivity and newer research is showing that this problem goes way beyond typical cases of Celiac.

How can you believe that gluten *only* causes damage in one form....blunted villi?

There are so many other people who have serious health problems with no blunted villi, postive antibodies to gluten and complete reversal of symptoms on the diet...sometimes this includes reversal of autoimmune diseases such as thyroid disease.

Why do those people have antibodies and why are they improving on a gluten free diet if gluten can *only* damage those who have blunted villi seen in a biopsy?

It just doesnt make sense to me that there is only *one* form of gluten sensitivity.

From my research it is now believed that Celiac Disease is only one type of gluten sensitivity....the type that causes blunted villi.

This doesnt mean that other forms are less severe...it just means that these other people will likely never be properly diagnosed because they will not test positive for Celiac Disease.

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Guest nini

very well said Rachel...

I too believe that someone with gluten intolerance is still being damaged in some way even if they don't specifically have Celiac... gluten is responsible for so many more illnesses than just Celiac.

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Rachel really nailed it in her last post I think.

I think it's actually a bit confusing to compare lactose intolerance and gluten intolerance, because I don't think the mechanism in question is the same. Lactose intolerance is simply a question of lacking the enzyme to digest lactose, but as far as I know that's not the case with gluten intolerance. If it was just a question of people being unable to digest the gluten in food, it shouldn't cause the range of symptoms it does. There definitely seems to be an immune reaction going on with people even in gluten intolerance. In short lactose intolerance is a digestion thing, gluten intolerance is an autoimmune thing. Not comparable at all in how seriously you should treat them.

We shouldn't forget that all this terminology, celiac disease, gluten intolerance, etc. are all just agreements of how to define a term according to current - or not so current- knowledge. Celiac disease has been defined as causing blunting of the vili because that's what was/is known. Other damage that a reaction to gluten might cause the body just doesn't fall under that, but that doesn't mean it might not have been better to just call it all the same disease.

All that said, I guess there might be a group of people that only has a problem digesting gluten, as well. In my book, they would be the only ones truly "just" gluten intolerant.

kvaak

Pauliina

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I guess I'll divide my response up into your first post and the second. I'm not saying that damage can only be caused in people with the DQ2 or DQ8 genes. There are other genes involved, but nobody's had the resources to go through all of them and check as to whether they are involved with celiac disease. You might have a gene that has not yet been identified as being tied to celiac. If you had a different gene, but a gene, nonetheless, you would have celiac, not gluten intolerance.

What I am saying is that if there's damage involved, then it's no longer gluten intolerance, because by definition, an intolerance yields no long term damage. Then it's something else--perhaps celiac, perhaps not, but certainly not an intolerance.

What you had, judging from your posts, was not gluten intolerance. But in those with gluten intolerance, they would have a pretty immediate turnaround.

------------------------------------------------------------------------------

Post 2:

I don't think that villous atrophy is the only result of celiac... I believe that celiac is a multi-system disease that can effect everything from the intestine to the brain or the thyroid. I do, however, believe that celiac originates as an autoimmune problem, with the most direct effect being villous atrophy, and from there expands in various directions to encompass other related problems, such as diabetes, thyroid disorders, lymphoma, etc. Many celiac-associated problems come as a result of villous atrophy, those being anemia, malnutrition, various deficiencies, and that temporary lactose intolerance due to villous blunting.

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Rachel really nailed it in her last post I think.

I think it's actually a bit confusing to compare lactose intolerance and gluten intolerance, because I don't think the mechanism in question is the same. Lactose intolerance is simply a question of lacking the enzyme to digest lactose, but as far as I know that's not the case with gluten intolerance. If it was just a question of people being unable to digest the gluten in food, it shouldn't cause the range of symptoms it does. There definitely seems to be an immune reaction going on with people even in gluten intolerance. In short lactose intolerance is a digestion thing, gluten intolerance is an autoimmune thing. Not comparable at all in how seriously you should treat them.

With gluten intolerance, it's an autoimmune reaction--basically, the immune system mistakening gluten as being an invader--basically what happens to people with juvenile diabetes (though not with gluten, of course). But in gluten intolerance, the gliadin doesn't trigger an autoimmune reaction. Celiac is autoimmune, but gluten intolerance isn't because there's no villous atrophy or reaction with the gliadin.

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celiac3270,

I think your definition of gluten intolerance is a logical one, but it's not the one that's usually used. The one I've heard most commonly takes gluten intolerance as the overall group of problems, with autoimmune damage to villi as one sub-heading, autoimmune damage to the skin as another, autoimmune damage to the Purkinje fibres in the brain as another.

I think you bring up a really interesting point though, in focussing on the gut. It may well be that there really is a difference between what's happening in the gut in those with celiac disease, and those with a different genetic make-up, especially DQ1, who often still have gut problems, but usually without villous atrophy. These people may never get villous atrophy. That doesn't mean it's not an autoimmune response though, or that the response is not overall just as damaging as celiac disease.

Best wishes,

Matilda

<{POST_SNAPBACK}>

Thank you for your input Matilda...you explained exactly what I was going to say next and you did it much better than I would have. :)

The term "gluten intolerance" or "gluten sensitivity" is often used when referring to autoimmune responses to gluten....whether its celiac or non-celiac. Its basically all the same if its causing damage.

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There are so many other people who have serious health problems with no blunted villi, postive antibodies to gluten and complete reversal of symptoms on the diet...sometimes this includes reversal of autoimmune diseases such as thyroid disease.

Why do those people have antibodies and why are they improving on a gluten free diet if gluten can *only* damage those who have blunted villi seen in a biopsy?

I actually think that gluten is bad for anyone to be eating. I mean on this board there are people with celiac disease, gluten ataxia, gluten sensitivity, wheat allergies, gluten intolerances, many different auto-immune disease, IBS (which probably is a gluten problem) ect. I have also read that gluten may be the underlying cause or that it may play a role in ADD/ADHD, schizophrenia, and possibly autism. And just recently, I learned on this board that gluten can damage the cerebellum. Gluten is hard for the human body to digest and it was not introduced into our diets until about 10,000 years ago. I don't think we were meant to eat it and that is why these health problems are occuring.

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I, too, think Rachel has described gluten intolerance (or sensitivity) very well with some good comments by Matilda and others. For those interested in getting more info on "the iceberg of which celiac disease is only the tip" I recommend reading "Dangerous Grains" by Braly & Hoggan.

I think there is clear evidence that gluten sensitivity has many presentations: the DQ2's & 8's usually get villi damage, the DQ1's & 3's often get neuro problems but can have nutrition deficiencies even w/o villi damage. Moreover all the gluten sensitive DQ's are subject to numerous auto-immune diseases in addition to their primary symptoms if they continue to eat gluten.

George

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Can anyone show this thread to their "celiac disease" or GS/GI doctor?

I have often thought some of the stuff we discuss here as lamen could be answered by one the leading docs in the field (though I'm sure they have better things to do than be our answer-puppet :) )

Just a thought.....

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I think there is clear evidence that gluten sensitivity has many presentations: the DQ2's & 8's usually get villi damage, the DQ1's & 3's often get neuro problems but can have nutrition deficiencies even w/o villi damage.  Moreover all the gluten sensitive DQ's are subject to numerous auto-immune diseases in addition to their primary symptoms if they continue to eat gluten.

<{POST_SNAPBACK}>

I agree George.

Not surprisingly I had NO noticeable gastro symptoms for the first 2 years of being sick. I saw every specialist *but* the GI.

I saw the Neurologist several times, Opthamologist several times, Dermatologist, Rheumatologist, Phsychiatrist, Obgyn, Infectious Disease specialist, numerous GP's and I have an Endocrinologist due to Graves Disease. I was tested for other autoimmune conditions and noone could find anything wrong anywhere. I had perfect MRI, catscans and barium. Every bloodtest came back normal. Celiac disease or gluten was never mentioned. I was just considered a "complicated case".

GI symptoms did not become noticeable until 1 year ago when weight loss became an issue. Now on the diet most of my other numerous symptoms that sent me to all those different specialists are gone. The weight loss and GI problems are now my #1 problems and don't seem to be going away nearly as fast as the other problems did. I think this indicates damage...I doubt I have or ever had blunted villi though. There is no doubt in my mind that Graves disease is linked to gluten and I probably would have ended up with more autoimmune diseases in the future. It felt like my body was being destroyed.

I have my follow-up with the GI on the 27th and I'll get the results of my biopsy. I'm going to ask as many questions as I can. Gonna make a list. :)

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I e-mailed my doctor, because I wanted to make sure what I was saying was correct and I wasn't misinterpreting what he said:

I could not have put it better than you.  They might be getting

tangled in semantics

jl

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I e-mailed my doctor, because I wanted to make sure what I was saying was correct and I wasn't misinterpreting what he said:

<{POST_SNAPBACK}>

I'm sure you are not misinterpreting anything he has ever told you. Different doctors have different opinions though. For example my doctor feels like there are other genes linked to Celiac and not having DQ2 or DQ8 doesnt 100% rule out Celiac. I have a feeling your doctor would not agree. Who's to say who is right?

Also Dr. Fine from Enterolab obviously has completely different views from what your doctor has told you so again...I think there are things we just cant answer *for sure* yet.

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Nothing more for me to add... Just wanted to say that reading this thread makes me wish I would have won the lottery rather than that person in Oregon, so I could have given it to Celiac research....

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Nothing more for me to add...  Just wanted to say that reading this thread makes me wish I would have won the lottery rather than that person in Oregon, so I could have given it to Celiac research....

<{POST_SNAPBACK}>

I think that millionaire Senator should have to give his $850 000 to charity! How unfair is that ??? I know it's everyone's right to buy a ticket, but I hate it when rich people win! Just like it sucked when J. Lo's mother won the lottery!

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I think that millionaire Senator should have to give his $850 000 to charity!  How unfair is that ???  I know it's everyone's right to buy a ticket, but I hate it when rich people win!  Just like it sucked when J. Lo's mother won the lottery!

<{POST_SNAPBACK}>

No doubt!

I hadnt heard about this millionaire guy winning the lottery but all I have to say is...that sucks! <_<

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No doubt!

I hadnt heard about this millionaire guy winning the lottery but all I have to say is...that sucks!  <_<

<{POST_SNAPBACK}>

Yeah, he is apparently a Senator from Illinois or something. He was one of the second place Powerball winners, and on the lottery claim form he put his net worth at $2.5-$7 million. How you can be unsure of $4.5 million is beyond me, but whatever!!!!

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very well said Rachel...

I too believe that someone with gluten intolerance is still being damaged in some way even if they don't specifically have Celiac... gluten is responsible for so many more illnesses than just Celiac.

<{POST_SNAPBACK}>

Hi,

I have to agree with that, even though I don't have damaged villi and no Celiac gene, I'm sure that my eyesight was being affected by the gluten. It has taken 2 years to even feel normal. Today was my first trip to the supermarket alone, driving myself and not wearing sunglasses. I know this sounds trivial but it was a big accomplishment for me. I used to always get brain fog and migraines so there must have been damage to the brain. My gastro doc won't give me a diagnosis of celiac or gluten intolerance so i can't take the cost of food off my taxes. He said that the gluten-free diet is a" placebo" for me although it was his idea in the beginning when my IgA came back elevated. I don't understand him.

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Hi,

I have to agree with that, even though I don't have damaged villi and no Celiac gene, I'm sure that my eyesight was being affected by the gluten. It has taken 2 years to even feel normal. Today was my first trip to the supermarket alone, driving myself and not wearing sunglasses. I know this sounds trivial but it was a big accomplishment for me. I used to always get brain fog and migraines so there must have been damage to the brain. My gastro doc won't give me a diagnosis of celiac or gluten intolerance so i can't take the cost of food off my taxes. He said that the gluten-free diet is a" placebo" for me although it was his idea in the beginning when my IgA came back elevated. I don't understand him.

<{POST_SNAPBACK}>

I just want to add that gluten intolerance must be an autoimmune disease

because my thyroid was destroying itself and I also developed diabetes, IMHO I think they are all related and hereditary!

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I've been having an interesting read here and wasn't planning on joining in since I think this is largely a matter of symantics. But.....

It is widely accepted that there is lots of confusion within the medical profession regarding the use of the terms like intolerance, sensitivity, celiac, etc. Unfortunately I think this is one of the obstacles to progress in understanding this gluten thing - a lot of time is consumed arguing about the definition of terms. And it seems likely to continue.

Here is an article by a leading neurological researcher regarding the neurological effects of gluten:

"Gluten sensitivity as a neurological illness "

M Hadjivassiliou, R A Grünewald and G A B Davies-Jones

Department of Neurology, The Royal Hallamshire Hospital, Glossop Road, Sheffield, S10 2JF, UK

http://jnnp.bmjjournals.com/cgi/content/full/72/5/560

The article summarizes several studies where there was gluten induced neurological damage without any sign of villinous atrophy.

An except from the article:

"

FROM GUT TO BRAIN

Gluten sensitivity is best defined as a state of heightened immunological responsiveness in genetically susceptible people.15 This definition does not imply bowel involvement. That gluten sensitivity is regarded as principally a disease of the small bowel is a historical misconception.28 Gluten sensitivity can be primarily and at times exclusively a neurological disease.29 The absence of an enteropathy should not preclude patients from treatment with a gluten-free diet. Early diagnosis and removal of the trigger factor by the introduction of gluten-free diet is a promising therapeutic intervention. IgG antigliadin antibodies should be part of the routine investigation of all patients with neurological dysfunction of obscure aetiology, particularly patients with ataxia and peripheral neuropathy.

"

That said I think the important thing is that we should all keep an open mind toward what gluten can cause independent of what someone calls it. By doing this we are most likely to be able to help each other and others as well. I think that's what most of us are here for.

George

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I have ataxia, and I was tested for Celiac through Prometheus labs.  The tests came back negative, but I still wonder if a gluten-free diet might help me with my shaking and balance, and the swishing sound that I have in my left ear.  Would cutting back on glutenous foods be helpful, or would I need to be strict about a completely gluten-free diet?  Thanks.

<{POST_SNAPBACK}>

I am coming in late on this post. I also have ataxia - cause under investigation. I have been told my several different neurologists - get the gluten out - regardless of the cause of the ataxia. Gluten is a neurotoxin and contributes negatively to neurological disorders of all kinds. One doctor told me all his patients are asked to go gluten-free/

Cutting back is no help at all. I thought that my problem was grains - not specifically gluten - so I restricted flour saturated products. That fixed the most acute symptoms but now, 15 years later, I have the ataxia diagnosis.

If it is determined positively that you do not have celiac disease then you need to push for an accurate diagnosis for the ataxia. It has a cause. If you don't know what it is exactly you cannot know what to expect in the future.

For the sake of your future health, go gluten free. Claire

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