Gluten Intolerance Vs. Celiac Disease

[Guest adamssa]

Hi,

I apoligize if this has been asked before. My computer is pretty slow and it takes forever to look up too many past threads.

I just found out by talking with my practitioner that some bloodwork I had done indicates I have gluten intolerance but not celiac disease. For some reason this wasn't made clear to me before...

But what is the difference? Does it just mean that my intestines and the rest of the body haven't been as damaged as they could be(Feels pretty damaged to me..... Does someone with gluten intolerance have to be as careful as someone with celiac about things like cross contamination? Can I expect to "recover" more as time goes by, like someone with Celiac would, or are the problems I am still having not a result of gluten damage because I am only intolerant?

I have been gluten free (except for those occasional mistakes) since the end of March. I first started having problems 3 years ago, but things didn' t become severe until last summer and last fall when everything became hell. Things have improved anyways, but not completely.

I am so happy to finally have a diagnosis anyways,

Thanks so much,

Sara

[CarlaB]

They're basically the same, both require a gluten-free lifestyle. You just mentioned bloodwork, so I don't really know how he designated you non-celiac from that, usually it means they didn't find damage in the biopsy. You can be very sick from gluten-intolerance and have the same symptoms as celiac. I did! It might help to think of celiac disease as one type of gluten-intolerance.

[plantime]

It is my personal opinion that gluten intolerance and celiac disease are the same things, with varying levels of damage. Being intolerant would mean only that you do not have intestinal damage yet. You still have to adhere strictly to a gluten-free diet to be healthy.

[Susan123]

I am gluten intolerant and it was explained to me by one of the top doctors for celiac that they are not the same thing. There is no evidence that Gluten-Intolerance will turn into Celiac Disease if you continue to eat gluten. I can eat gluten and not have damage or symptoms but I CHOOSE to eat the gluten free diet just in case. I was told it was a personal decision just like when lactose intolerant people drink milk and feel bad afterwards. He said if gluten makes me feel bad don't eat it. If it doesn't I could find my level of comfort with it. The difference.... both gluten intolerance and celiac disease produce a response just celiac disease attacks the small intestine and gluten intolerance does not. Also, not everybody with gluten intolerance can say they experience no symptoms like me. I am fortunate in that sense. It is amazing I feel that I even got diagnosed.

[CarlaB]

I would guess that there are differing varieties of gluten intolerance. I do have the autoimmune antibodies, yet I'm only gluten intolerant. My understanding is that autoimmune antibodies indicate that real damage is being done to the body, which would have also been proven by the malabsorption that I had and the other "classic celiac symptoms." In addition to classic symptoms, I also had joint pain, bruising, fatigue, brain fog, etc. Like any other across the board statement, I would watch that one. I do not think it's safe for all gluten-intolerant people to eat gluten because for some of us it's a lot more than a lactose type reaction!

[mle-ii]

I would guess that there are differing varieties of gluten intolerance. I do have the autoimmune antibodies, yet I'm only gluten intolerant. My understanding is that autoimmune antibodies indicate that real damage is being done to the body, which would have also been proven by the malabsorption that I had and the other "classic celiac symptoms." In addition to classic symptoms, I also had joint pain, bruising, fatigue, brain fog, etc. Like any other across the board statement, I would watch that one. I do not think it's safe for all gluten-intolerant people to eat gluten because for some of us it's a lot more than a lactose type reaction!

I agree, and the reaction to lactose is a completely different one from gluten intolerance. At least in me.

Gluten intolerance in my body produces antibodies. Lactose intolerance is just the body not breaking down lactose and the complex sugars getting into your colon and causing a reaction via irritation cause by bacteria.

From what I understand there isn't any enzyme that breaks down gluten (someone please correct me if I'm wrong), but in the case of lactose the digestive enzyme lactase breaks down lactose so that the body can take it in. Two totally separate things. In fact lactose intolerance can go away in some cases; I suspect that gluten intolerance does not.

[CarlaB]

Dr. Fine of Enterolab says that gluten intolerance is a permanent condition, unlike lactose intolerance.

[Guest adamssa]

Thanks guys. I agree that gluten intolerance can cause similar severe symptoms as with celiac. I've definitely dealt with many of them. I was told that my blood test demonsrated "low levels of celiac" and therefore meant I was gluten intolerant but not a celiac. Also, I wasn't eating gluten when I was tested, which makes me think the test might be slightly inaccurate (even though he tells me that only affects the result slightly). But, either way gluten intolerant or celiac I guess I still have to eat the same way.

[CarlaB]

Thanks guys. I agree that gluten intolerance can cause similar severe symptoms as with celiac. I've definitely dealt with many of them. I was told that my blood test demonsrated "low levels of celiac" and therefore meant I was gluten intolerant but not a celiac. Also, I wasn't eating gluten when I was tested, which makes me think the test might be slightly inaccurate (even though he tells me that only affects the result slightly). But, either way gluten intolerant or celiac I guess I still have to eat the same way.

Not eating gluten will definately affect the test. I mean, the idea is we stop eating gluten so that our body stops producing antibodies that cause damage.

[Susan123]

I would guess that there are differing varieties of gluten intolerance. I do have the autoimmune antibodies, yet I'm only gluten intolerant. My understanding is that autoimmune antibodies indicate that real damage is being done to the body, which would have also been proven by the malabsorption that I had and the other "classic celiac symptoms." In addition to classic symptoms, I also had joint pain, bruising, fatigue, brain fog, etc. Like any other across the board statement, I would watch that one. I do not think it's safe for all gluten-intolerant people to eat gluten because for some of us it's a lot more than a lactose type reaction!

I am not comparing Lactose intolerance and Gluten intolerance because I know they are different. He was just saying if gluten makes you feel bad don't eat it plain and simple. I produce a high level of IgA antibodies when I am eating gluten. I think my highest was 141. But I never produce a positive Tissue Transglutaminase nor show damage in my body. This was confirmed after two gluten challenges over a period of years with no damage whatsoever. I had a little redness in my stomach but it was confirmed not to be gastritis. He said it was probably the wheat allergy that produced extra stomach acid. I don't think it is safe for anybody to eat gluten on someone elses experience and that is why I said in my earlier post that it is truly a personal decision because after all you only get one body in life. That is why I get a little sensitive when I hear somebody group all of them together (celiac, gluten intolerance, allergy etc.) They are unique in every individual.

[CarlaB]

True, they are unique in every individual. I am only gluten-intolerant, but I have raised Tissue Transglutaminase, which is why I thought the generalization could not be made that someone with gluten intolerance was not doing damage to their body but was only feeling discomfort from it. Every individual is different, as you said.

[daffadilly]

Thanks guys. I agree that gluten intolerance can cause similar severe symptoms as with celiac. I've definitely dealt with many of them. I was told that my blood test demonsrated "low levels of celiac" and therefore meant I was gluten intolerant but not a celiac. Also, I wasn't eating gluten when I was tested, which makes me think the test might be slightly inaccurate (even though he tells me that only affects the result slightly). But, either way gluten intolerant or celiac I guess I still have to eat the same way.

the level of your blood test does not mean that you are a little or a lot celiac.

A blood test cannot tell which you are, celiac or gluten intolerant. A blood test tells you that you have antibodies to gluten. It is sorta like being told you have cancer in degrees. Either way, a lot or a little, you got cancer.

If you want to know whether you have celiac or guten intolerance you get a gene test from Enterolab.com

You could also get a biopsy, but they could miss it or you might have celiac & just not have gut damage yet.

[Guest adamssa]

the level of your blood test does not mean that you are a little or a lot celiac.

A blood test cannot tell which you are, celiac or gluten intolerant. A blood test tells you that you have antibodies to gluten. It is sorta like being told you have cancer in degrees. Either way, a lot or a little, you got cancer.

If you want to know whether you have celiac or guten intolerance you get a gene test from Enterolab.com

You could also get a biopsy, but they could miss it or you might have celiac & just not have gut damage yet.

I find it pretty disturbing that they will tell you your blood test means something for sure when it doesn't. But, I think for now I'm just going to try and be 100% gluten-free and live not knowing which it is, since knowing I am majorly sensitive is enough. I've already ran far too many tests invasive and not invasive, that I don't want to go through any more right now. thanks though.

Sara

[gfp]

I find it pretty disturbing that they will tell you your blood test means something for sure when it doesn't.

Well the problem really is that testing becomes more sophisticated and newer tests formulated.

At some point in the 50's (exactly when depending where you are) celiac disease became recognised by the biopsy.

As it happens blood tests were pretty much around the corner but for one reason or another the biopsy became the gold standard.

Obviously a biopsy in 1950 wasn't the same as one today ... the testing, methodology and interpretation have both developed and the same goes for the blood tests although they blood tests have got increasingly reliable.

There was some doubt as to the accuracy of blood tests since some people with positive biopsies tested negative and some people negative by biopsy tested positive but at the time both of them were inaccurate, and it was decided by various medical authorities that the biopsy was the gold standard.

Now both tests are far more accurate and most importantly blood tests have progressed much further.

In simple terms some advances are testing for total A antibodies... some people just have less of the type A antibodies and hence the test against gliadin specific A antibodies using a global average of "normal" was leading to false negatives.

The thing is most of the blood test advances are comparitively recent... in the last 10 years.

On top of this there are also many aspects of gluten intolerance/celiac disease which are only just beginning to surface.

One of these is GERD (acid reflux) ... which 5 years ago (perhaps a little longer) was not even recognised as a symptom but today is actually recognised as a diagnostic and occurs in over 50% of celiacs.

I mention this for a reason. GERD is relatively common but 5 yrs ago celaic was regarded as very rare... something like 1:5000 was being used as an average. About 4 years ago I got a new Dr., informed him I had celiac and he told me I couldn't have it because it was a childrens disease so I just told him we were finished here and walked out. 10 yrs ago I had colonoscopy and gastric biopsy .. noone mentioned celiac...

I mentioned my symptoms alternating D and C, GERD etc, to the specialist ad he said they were not related, I had IBS and the GERD was entirely unrelated. Presumably the next celiac said the same and the specialist again said they are not related. etc. etc.

This was the basic medical idea about celiac disease.

Only 1:5000 people were diagnosed and hence it was coinsidered very rare. The rate now depends where you live ...

Open Original Shared Link

What happened? Well one of those pan European studies funded with EU money is largely responsible. As I understand it they took a basket of diseases.. some rare and some commmon and routinely screened a section of volunteers ... the aim was really just to find regional dfferences but it ended up showing a very high incidence of celaic by blood test screening. Very high being 30x what was expected.

What happened next was that some countires were shocked, others called into question the validity of diagnosis by non biopsy and most are best described as burying their heads in the sand.

If you followed the link then you will see Italy took the bull by its horns and now routinely screens all pre-school children. The diagnosis rate of this group is about 1:150.

Now the real question

Most of the medical studies on celiac prevalance are fundamentally flawed, firstly they use 1:5000 as the incidence in a normal population but if we beleive the routine screening this means that the non celaic control group actually contains a significant amount of celiacs. In fact it contains more than the diagnosed group!

However what has not happened (and I hope never will) is that a positive screening on a statistically significant part of the population is done and a significant number of those having negative biopsy.

This group, negative biopsy positive blood tests are then split in two and one half told to eat gluten and the other half told not. Then every 10 yrs they are reassessed by biopsy and we check if any of those negative biopsy have contracted celiac while running a control group with negative blood test and negative biopsy.

The reason I hope this will never happen is because it is deliberatly making people ill. Probably killing a few of them and making life miserable for the rest.

However, don't worry this test is underway.... the ELSPAC study that found the original higher than expected incidence was a blind test. Those with celiac were not told they had it and will not be so as they get older, become ill and some of them die from celaic complications ...

Unfortunately for ELSPAC Italy screwed up this study, it decided to routinely screen everyone so if the child is in the study they will find out seperately.

Anyway the question is perhaps is a gluten intolerant biopsy negative person just a latent celiac. If you like me find sacrificing the health of kids distasteful then perhaps the best thing is to assume it can be... and act accordingly.

But, I think for now I'm just going to try and be 100% gluten-free and live not knowing which it is, since knowing I am majorly sensitive is enough. I've already ran far too many tests invasive and not invasive, that I don't want to go through any more right now. thanks though.

Sara

This is acting accordingly in my book!

[eKatherine]

Now the real question

Most of the medical studies on celiac prevalance are fundamentally flawed, firstly they use 1:5000 as the incidence in a normal population but if we beleive the routine screening this means that the non celaic control group actually contains a significant amount of celiacs. In fact it contains more than the diagnosed group!

However what has not happened (and I hope never will) is that a positive screening on a statistically significant part of the population is done and a significant number of those having negative biopsy.

This group, negative biopsy positive blood tests are then split in two and one half told to eat gluten and the other half told not. Then every 10 yrs they are reassessed by biopsy and we check if any of those negative biopsy have contracted celiac while running a control group with negative blood test and negative biopsy.

The reason I hope this will never happen is because it is deliberatly making people ill. Probably killing a few of them and making life miserable for the rest.

However, don't worry this test is underway.... the ELSPAC study that found the original higher than expected incidence was a blind test. Those with celiac were not told they had it and will not be so as they get older, become ill and some of them die from celaic complications ...

Unfortunately for ELSPAC Italy screwed up this study, it decided to routinely screen everyone so if the child is in the study they will find out seperately.

Anyway the question is perhaps is a gluten intolerant biopsy negative person just a latent celiac. If you like me find sacrificing the health of kids distasteful then perhaps the best thing is to assume it can be... and act accordingly.

This is acting accordingly in my book!

Wow, that's horribly unethical, especially because you don't need to deliberately divide the group into gluten-free and non-gluten-free. They will do it themselves, as there will be a certain number of non-compliant patients. Someone could design a series of regular followup interviews to determine the patient's level of compliance with the diet and their health progress.

[Nic]

I am gluten intolerant and it was explained to me by one of the top doctors for celiac that they are not the same thing. There is no evidence that Gluten-Intolerance will turn into Celiac Disease if you continue to eat gluten. I can eat gluten and not have damage or symptoms but I CHOOSE to eat the gluten free diet just in case. I was told it was a personal decision just like when lactose intolerant people drink milk and feel bad afterwards. He said if gluten makes me feel bad don't eat it. If it doesn't I could find my level of comfort with it. The difference.... both gluten intolerance and celiac disease produce a response just celiac disease attacks the small intestine and gluten intolerance does not. Also, not everybody with gluten intolerance can say they experience no symptoms like me. I am fortunate in that sense. It is amazing I feel that I even got diagnosed.

So am I understanding this right that someone who is gluten intolerant does not run the same risks as a Celiac for further damage if they continued to eat gluten? Does the same go for other food intolerances as well? You avoid the food to make yourself feel better?

[gfp]

Wow, that's horribly unethical, especially because you don't need to deliberately divide the group into gluten-free and non-gluten-free. They will do it themselves, as there will be a certain number of non-compliant patients. Someone could design a series of regular followup interviews to determine the patient's level of compliance with the diet and their health progress.

Its certainly pretty distasteful. The weird thing is as many people will say its unethical to inform the person they have a disease when they signed up to a blind trial.

You can take this a step further.... for instance people who donate blood might be found to have hepatites or hiv but if they have donated under an anonomity agreement they can't be informed.

The second point is how would you check the ones following the diet are really gluten-free?

Could you allow a brush off the crumbs and pick out the croutons gluten-free person to claim they are gluten-free?

I honestly think the whole test is flawed.... can someone with 'gluten intolerance' develop celiac if untreated?

Er, the answer is resoundingly yes.... we already know this from people who tested negative on biopsy once and postive later.

Did gluten intolerance develop into celiac ? Well you can't say this from the observations BUT it seems likely... so to me the sensible thing to do from my POV is to treat it as if it can until we find out more.

If there were some drug treatment that specifically targetted the villi perhaps a distinction might be justified but since the therapy for both is IDENTICAL ... adherence to a gluten-free diet why split hairs?

[chewymom]

the level of your blood test does not mean that you are a little or a lot celiac.

A blood test cannot tell which you are, celiac or gluten intolerant. A blood test tells you that you have antibodies to gluten. It is sorta like being told you have cancer in degrees. Either way, a lot or a little, you got cancer.

If you want to know whether you have celiac or guten intolerance you get a gene test from Enterolab.com

You could also get a biopsy, but they could miss it or you might have celiac & just not have gut damage yet.

I thought Enterolab could NOT tell you whether you have celiac. Their test only shows gluten sensitivity or gluten intlerance, right?

[wonkabar]

I thought Enterolab could NOT tell you whether you have celiac. Their test only shows gluten sensitivity or gluten intlerance, right?

You are correct...Enterolab does not Dx Celiac Disease! It will tell you if you have an active dietary gluten sensitivity, an auto-immune reaction to gluten and if there's malabsorption.

The gene testing does not Dx Celiac, either. It indicates what type of genetic markers, if any, you are carrying.

My son does have an active gluten sensitivity, an auto-immune response to gluten but, thankfully, there's no indication of malabsorption. He also tested positive for one main Celiac gene and one Non-Celiac gluten sensitivity gene.

While I understand that you can simply be gluten intolerant and not necessarily develop Celiac, I still believe there are varying levels of Gluten Sensitivity. I also believe you can ultimately develop Celiac Disease if you have enough of the markers for it and don't eliminate gluten from your diet. My thought is why should I wait until my son's intestines are damaged before I remove gluten from his diet.

[Debbie65]

I am confused. And I appologise, I am horribly ignorant of this condition for a person who was diagnosed as having actual coeliac disease - not gluten intolerance as a baby.

I have been reading this thread and found it very interesting but it has raised some questions for me that I hope someone can answer.

Are people who have been diagnosed as coeliac, gluten intolerent people who have damage to the villi whereas gluten intolerant people have the SAME condition only do not as yet have the same damage? ( sort of like HIV & AIDS)

Also I read somewhere else on the board that a relative of a member died of coeliac, this worries me as I have only recently gone back to gluten-free after 20 odd years of denial. Can anybody shed any light on this for me?

Thanks

[taz sharratt]

Hi,

I apoligize if this has been asked before. My computer is pretty slow and it takes forever to look up too many past threads.

I just found out by talking with my practitioner that some bloodwork I had done indicates I have gluten intolerance but not celiac disease. For some reason this wasn't made clear to me before...

But what is the difference? Does it just mean that my intestines and the rest of the body haven't been as damaged as they could be(Feels pretty damaged to me..... Does someone with gluten intolerance have to be as careful as someone with celiac about things like cross contamination? Can I expect to "recover" more as time goes by, like someone with Celiac would, or are the problems I am still having not a result of gluten damage because I am only intolerant?

I have been gluten free (except for those occasional mistakes) since the end of March. I first started having problems 3 years ago, but things didn' t become severe until last summer and last fall when everything became hell. Things have improved anyways, but not completely.

I am so happy to finally have a diagnosis anyways,

Thanks so much,

Sara

sorry havent read all the posts yet but its basically the same thing. unless he thought yu had a wheat problem then you wouldnt be celiac. but again if gluten is the prob then you are celiac.