Non Celiac Gluten Intolerance

[ElenaDragon]

I know that celiac is an autoimmune reaction to gluten and that any small amount of gluten can cause this reaction. Is it the same for non-celiac gluten intolerance? Or is there something else going on mechanically if you don't have celiac? If it is a non-celiac gluten intolerance, will any small amount of gluten cause a reaction or does it depend on the amount eaten?

Just trying to understand the difference. Thanks for any help.

[Guest j_mommy]

Here's my understanding.....

Celiac's are gluten intolerant but if you are gluten intolerant it does not necassariliy mean you have celiac.

Gluten intolerance is similar to celiac, in that if you eat gluten you get ill(whatever sypmtoms you have). I do not thinkit matters how much you eat..if you are gluten intolerant, the reaction is similar to that of a celiac.(all of this came from Dr. Greens book)

I hope that helps alittle and i'm sure others will add more!

[ravenwoodglass]

I know that celiac is an autoimmune reaction to gluten and that any small amount of gluten can cause this reaction. Is it the same for non-celiac gluten intolerance? Or is there something else going on mechanically if you don't have celiac? If it is a non-celiac gluten intolerance, will any small amount of gluten cause a reaction or does it depend on the amount eaten?

Just trying to understand the difference. Thanks for any help.

I was diagnosed celiac by an allergist and my GI confirmed. There was no doubt about it at that point. I had just about every celiac symptom you can get and they had been progressing in spurts since childhood. I am also extremely sensitive to even small amount of CC and had many autoimmune disorders that stemmed directly from the autoimmune reaction from gluten. I recently had gene testing done, to everyones surprise I do not have a 'celiac' gene. Genetically I am gluten intolerant, symptom, destruction to my body (some permanent) and sensitivity are just as serious as anyone with a true 'celiac' gene. The only differnce in my case, that I can see, is that the worst of my symptoms for many years were neurological with GI symptoms not starting in ernest until after my last child was born.

[ElenaDragon]

Hmm, I still don't understand the difference between celiac and non-celiac gluten intolerance. Is it based only on genes? Functionally are the two the same? If so, the gene definition doesn't make sense to me. There must be something that functionally distinguishes a gluten intolerance gene from a celiac gene... otherwise why would they be called different things?

[CarlaB]

There's really no clear answer on this. It depends on why you are gluten intolerant.

Some people are severely gluten intolerant, yet do not have the celiac genes. They have all the symptoms of celiac, but for whatever reason did not test positive.

Some people have the genes and just didn't have the damage required for a celiac diagnosis.

Some people have gluten intolerance secondary to another illness so it's not as severe. At first, I was extremely sensitive to minute amounts of gluten. I do not have the celiac genes and I tested negative for celiac. As my other infection is healing, I am finding that I am becoming less sensitive to gluten.

Some people might just get stomach upset from gluten but not have an immune reaction.

Most of the time, there is no way to figure out which category you fall into!!

[EBsMom]

Hmm, I still don't understand the difference between celiac and non-celiac gluten intolerance. Is it based only on genes? Functionally are the two the same? If so, the gene definition doesn't make sense to me. There must be something that functionally distinguishes a gluten intolerance gene from a celiac gene... otherwise why would they be called different things?

I've been reading extensively, books and online, for the last 3 months, trying to understand the scope of gluten intolerance. I've finally come to the conclusion that it's not completely understandable at this point in time. The medical establishment doesn't fully understand it. The academic community doesn't fully understand it. That leaves us, the poor peons that actually have to live with it, with very little black and white information. It's all shades of gray, as far as I can tell. I'm assuming that in the next 10, 20, 30 (maybe longer) years, gluten intolerance will come to be seen as a spectrum, and that celiac disease will be recognized as one of several manifestations of GI. Or, it will be seen as one end of the spectrum - there's already some support for that theory in the current literature, with silent celiac or latent celiac at the other end of the spectrum.

At this point in time (trying to address your question), celiac disease is characterized by the blunting of villi in the small intestine. That positive biopsy result (showing villous blunting or atrophy) is the only

"absolute" way that most Dr's will diagnose celiac disease. Even with positive blood work, most MD's say that a biopsy is necessary to confirm. Certain gene types correlate strongly to celiac disease, but there are exceptions (not all biopsy diagnosed celiacs have those genes.) Also, you can have the "correct" genes, and NOT have symptoms, positive bloodwork, or villous blunting. So genes are part of the picture, but cannot stand alone. I think that the only thing that stands alone to diagnose celiac disease is a positive biopsy.

celiac disease is the only part of the GI spectrum that has been studied in any depth to date. I think that's why we (non-celiac gluten intolerants) end up looking at our health issues throught he prism of celiac disease and celiac disease research. There wasn't really a name for "what ails us" until recently....and even celiac disease research itself is young, relatively speaking. We just don't have a full picture available to us at this time. There are no absolute answers (that I can find, anyway.) If you're not a biopsy confirmed celiac, then you kind of have to figure it out for yourself - evaluate your symptoms, determine your best course of action, and decide where you fit in on the GI spectrum. I look forward to a day when perhaps there will be more guidance, more black and white information, available on ALL manifestations of GI.

Okay....off my soapbox. :-)

Rho

[CMCM]

I put some of this on another thread....I just saw a lecture from Dr. Ken Fine of Enterolab, and he discussed this.

Basically, gluten intolerance is a spectrum, with celiac disease being the most extreme end of the spectrum and only occurring when you possess the celiac gene. Only a celiac will get the characteristic flattening of the villi, which is observable in a biopsy and which for the last 40 years has been how the medical profession diagnosed celiac disease. Lacking the celiac gene, you can nevertheless be sensitive to gluten, you can get very sick from it, you can pretty much get all the varied symptoms as celiac disease EXCEPT you just won't get the villi damage. But if you are gluten sensitive and continue to eat it, you can still get autoimmune reactions, gluten can still attack and destroy various body tissues, and so on. Dr. Fine says gluten sensitivity should be taken just as seriously as celiac disease, and whether you are celiac or non-celiac gluten sensitive, you should scrupulously avoid all gluten forever.

Unfortunately, knowledge of the entire spectrum of gluten sensitivity is very very VERY limited within most of the medical profession. Only celiac disease is at all understood, and even then it's not well understood. Many doctors have never treated a celiac. Since there are no meds for it, medical reps don't visit doctors' offices and teach them about it! When my mom was diagnosed celiac 40 years ago, doctors told her about 1 in 10,000 people might have it. Now that number is down to 1 in 133. It's probably more like 1 in 75. And many celiac reserachers are beginning to think up to 100% of us are at the very least gluten sensitive and should avoid gluten!

It will be a long time before all this is mainstream knowledge. Meanwhile, we individually must get all the knowlege we can and take care of ourselves....we cannot expect our knowledge to come from our local doctors, most of whom know little to nothing about all this. We are to be very proactive for our own health.

[CMCM]

Another comment....the biggest disservice ignorant doctors do is tell a patient "You don't have celiac disease, so you can eat gluten." NOT TRUE!!! What they should be telling this patient is "You don't have celiac disease so your villi show no damage. However, you are probably gluten sensitive and you should still go on a gluten free diet."

[EBsMom]

Basically, gluten intolerance is a spectrum, with celiac disease being the most extreme end of the spectrum and only occurring when you possess the celiac gene. Only a celiac will get the characteristic flattening of the villi, which is observable in a biopsy and which for the last 40 years has been how the medical profession diagnosed celiac disease. Lacking the celiac gene, you can nevertheless be sensitive to gluten, you can get very sick from it, you can pretty much get all the varied symptoms as celiac disease EXCEPT you just won't get the villi damage.

Sorry, but that's not right. I took this quote right from the Enterolab site.

"In this regard, it seems that in having DQ2 or DQ3 subtype 8 (or simply DQ8) are the two main HLA-DQ genes that account for the villous atrophy accompanying gluten sensitivity (in America, 90% of celiacs have DQ2 [a more Northern European Caucasian gene], and 9% have DQ8 [a more southern European/Mediterranean Caucasian gene], with only 1% or less usually having DQ1 or DQ3)."

While MOST people with biopsy confirmed celiac disease (blunted or flattened villi) have DQ2 or DQ8, there is a very small percentage of people that do not. We have a couple (or a few?) of biopsy confirmed celiacs on this forum who fall into that category.

Rho

[CMCM]

This is partially right. It's true that not all celiac genes have been identified. For that matter, nor have all gluten sensitivity genes. And there are other mysterious, yet unknown factors that are involved in gluten reactions as well. And to make things even more confusing, I read an article by Dr. Stephen Sinatra, the heart doctor, who claimed that his son has what he called ACQUIRED celiac disease (a result of some sort of toxic mold exposure, if I remember correctly), and his son had none of the identified genes. I've never heard of acquired celiac disease outside of Dr. Sinatra's comments and I was very surprised to read about that. However, IN GENERAL, and Dr. Fine said what I stated previously in a lecture I attended just last week. He was most adamant that gluten sensitivity, while not causing villi flattening, would still be capable of causing much of the same intestinal and organ damage, leaky gut, etc as does celiac disease. He also mentioned that the traditional definition of celiac disease is really at a point of needing redefinition as the medical community is still using the same criteria that was used 45+ years ago. Too much simply is not known about the whole symdrome, but the unfortunate thing is that due to the fact that doctors tend to hang on to the old traditional definition of celiac disease and its effects, an enormous number of people are being missed, dismissed, ignored, and told to go home and eat bread simply because they don't present with the damaged villi. There is far more to this whole thing than the villi issue.

Sorry, but that's not right. I took this quote right from the Enterolab site.

"In this regard, it seems that in having DQ2 or DQ3 subtype 8 (or simply DQ8) are the two main HLA-DQ genes that account for the villous atrophy accompanying gluten sensitivity (in America, 90% of celiacs have DQ2 [a more Northern European Caucasian gene], and 9% have DQ8 [a more southern European/Mediterranean Caucasian gene], with only 1% or less usually having DQ1 or DQ3)."

While MOST people with biopsy confirmed celiac disease (blunted or flattened villi) have DQ2 or DQ8, there is a very small percentage of people that do not. We have a couple (or a few?) of biopsy confirmed celiacs on this forum who fall into that category.

Rho

[busybee629]

I put some of this on another thread....I just saw a lecture from Dr. Ken Fine of Enterolab, and he discussed this.

Basically, gluten intolerance is a spectrum, with celiac disease being the most extreme end of the spectrum and only occurring when you possess the celiac gene. Only a celiac will get the characteristic flattening of the villi, which is observable in a biopsy and which for the last 40 years has been how the medical profession diagnosed celiac disease. Lacking the celiac gene, you can nevertheless be sensitive to gluten, you can get very sick from it, you can pretty much get all the varied symptoms as celiac disease EXCEPT you just won't get the villi damage. But if you are gluten sensitive and continue to eat it, you can still get autoimmune reactions, gluten can still attack and destroy various body tissues, and so on. Dr. Fine says gluten sensitivity should be taken just as seriously as celiac disease, and whether you are celiac or non-celiac gluten sensitive, you should scrupulously avoid all gluten forever.

Unfortunately, knowledge of the entire spectrum of gluten sensitivity is very very VERY limited within most of the medical profession. Only celiac disease is at all understood, and even then it's not well understood. Many doctors have never treated a celiac. Since there are no meds for it, medical reps don't visit doctors' offices and teach them about it! When my mom was diagnosed celiac 40 years ago, doctors told her about 1 in 10,000 people might have it. Now that number is down to 1 in 133. It's probably more like 1 in 75. And many celiac reserachers are beginning to think up to 100% of us are at the very least gluten sensitive and should avoid gluten!

It will be a long time before all this is mainstream knowledge. Meanwhile, we individually must get all the knowlege we can and take care of ourselves....we cannot expect our knowledge to come from our local doctors, most of whom know little to nothing about all this. We are to be very proactive for our own health.

I so appreciate your information on this topic. I had blood tests that were all positive. My doctor put me on the gluten free diet right away. Within a week I had the biopsy done and it was normal. I dont know if being on the gluten free diet for a week would change it. But after the biopsy my Dr just sent me on my way with my horrible stomach pain and told me I just had IBS.

I spent the next 3 years with a horrible aching stomach, diarrhea, joint pain etc etc without any relief from IBS remedies. Then I thought I would try going off gluten again. But I would do it in spurts. A week or so off then back on.

Then I began to have these severe episodes of joint pain which was so excruciating, that pain meds didnt help. I would go off of gluten and away it would go. I did this stupidly 2 times. I am now convinced I shouldnt eat gluten.

I sure wish my Dr would have encouraged me to do this even with the negative biopsy. It would have saved me alot of pain.

[mamabear]

There are 2 new articles that address how difficult it is to diagnose celiac disease in the Annals of Internal Medicine....Sept 4 edition, I believe. Sorry I can't be more specific as I am travelling home as I write, and I don't have the journal with me. They do go into the pitfalls of diagnosis and include the topic of gluten sensitive enteropathy that is non celiac. I will try and update this post with specifics tomorrow. This is also called "The Green Journal" if anyone has access to it.

[DeerGirl]

There are 2 new articles that address how difficult it is to diagnose celiac disease in the Annals of Internal Medicine....Sept 4 edition, I believe. ........This is also called "The Green Journal" if anyone has access to it.

GFMemphis -- if you find the reference / link / authors, et cetera for this piece, please post!

Thanks!

[mamabear]

The reference is from Annals of Internal Medicine 4 September 2007 volume 147 number 5.

One is "Accuracy of Serologic Tests and HLA-DQ Typing for Diagnosing Celiac Disease"

Hadith,von Blomberg,Crusius,Bloemena and others

Second article(same journal) is

"Tailored Testing for Celiac Disease"

Rashtak and Murray

There is a website www.annals.org but I am unsure if you have to be a registered user or not.

The takeout from the second article seems to be that HLA typing should be used when there is a high clinical suspicion of celiac disease and it is a high sensitivity RULE-OUT test. In other words, to prove it is NOT present. Serologic testing(TGA and EMA) to RULE-IN when suspicion is low and you need high specificity, to support that it IS there.

Keep in mind this is for celiac disease, not gluten sensitive enteropathy..the first article goes way in depth with flow charts ,lab serologies,Marsh categories,etc...and distinguishes between celiac disease; diagnoses suggestive of celiac disease(defined as gluten sensitive enteropathy); diagnosis NOT suggestive of celiac disease(H Pylori gastritis,reflux esophagitis,autoimmune gastritis,NSAID gastropathy,Candida esophagitis,angiodysplasias of the stomach or small bowel); and Diagnosis not compatible with celiac disease(Crohn's.HIV,Giardiasis,Common variable immunodeficiency).

Sure wish I could link it.......I will try, but I only have it in an actual print journal. They are THE most comprehensive summaries of this diagnostic dilemna I have read.

[mamabear]

Good news! I just tried www.annals.org and it is there for your perusal! No subscription required.

I highly recommend this as an academic resource.......based in Europe where we all know they are light years ahead of the USA!

[mappylad]

Hi, I live over in the UK and only have access to free healthcare. Through hard work and investigation of symptoms I believed I was Coeliac and because of an unhelpful Doctor (thought I would have been diagnosed as a child if Coeliac!), I eliminated wheat from my diet and things began to improve. Over here Coeliacs get free prescriptions for Gluten Free food only if they are diagnosed by Biopsy. My unhelpful doctor insisted that I must go back to wheat to take blood tests and biopsy to get prescription. But he was still happy to give me all the pills for the symptoms I had experienced on wheat!! I had been wheat free for almost a year and felt fantastic and knew from my research that I had another year to go till most problems would be normal. Reluctantly ate wheat over the months in very small quantities. Doctor had not advised that I should be eating at least 4 slices of bread per day. It was 6 weeks till blood test this January 07. I then had to wait till April 07 before Biopsy. After the biopsy, in the recovery room they give you toast!!! I had to wait until June 07 to get the results. I waited one and a half hours in waiting room - consultant was running late. I went in, sat down, he said "you're blood tests were negative, your biopsy was negative. You don't have Coeliac Disease." That was my consultation. He wanted me to leave and eat wheat. I argued with him for over half an hour. I had researched and knew that they had not given me the anti ttg test. "we don't do those 'cheap' tests" he said, even though our British Medical Journal previously stated they were more important than the older blood tests. He stated that Biopsy was "gold standard". I said that according to the British Medical Journal a man was Biopsied twice and sent home due to negative results even though he displayed the symptoms. Three months later he was rushed into hospital with critical Coeliac problems. A further Biopsy showed he was Coeliac. My consultant would not budge from his gold standard. I demanded that if I was not Coeliac that he tell me what condition I had or test me. He then stated from the top of his head that "some people are "non-coeliac Gluten Intolerant - I'll put you down as that." I have since gone to his superior and received recognition of being a Coeliac. Having been gluten free for almost a year my villi had time to heal. It is worth noting that there are many places where a biopsy can be taken that will show no problems. The bottom line in this country - people fail the tests, the consultants hold the tests as fool-proof - but they are not. Anyone who fails the tests are classified as non-coeliac gluten intolerant and cannot get free prescriptions. But those who fail the tests don't want to make themselves sick again to pass the tests nor do they want to undergo the barbaric practice of biopsy. If I tell a doctor I have a headache - he listens to my symptoms and prescribes medication. He does not order a biopsy of my brain to make sure I have a headache and rule out brain tumour! Doctors and consultants over here don't know enough, which I can understand, but they don't seem to want to learn more, to identify the additional symptoms that don't show up on the standard symptom lists we all read. They don't want to learn. This dumbfounds me! I have learn't more through trawling the internet and medical literature than the people who are paid hundreds of thousands of pounds to know. I feel that if the true problem of celiac disease was revealed it would be frightening. The obvious burden on the UK health service would be heavy. I have read that paranoia can be a symptom of celiac disease in some people.