Celiac Disease Vs. Gluten Sensitivity

[happygirl]

From: Open Original Shared Link

Celiac Disease vs. Gluten Sensitivity

By Tricia Thompson, MS, RD, the gluten free dietitian

"When I first started working in this field, the term gluten sensitivity was used interchangeably with the term celiac disease

[Rachel--24]

I think there's alot of truth in this.

Personally, I feel very strongly that Celiac and gluten sensitivity are two seperate conditions.

I think this would explain why so many do not test positive for Celiac...even though symptoms may seem similar and even though there is a positive response to the diet.

I think we (those who do not have Celiac) could continue to suffer symptoms while consuming gluten....without EVER having a positive biopsy or bloodwork for Celiac (regardless of how sick we may become). If the autoimmune response is not occuring...then its not Celiac Disease.

There has to be a genetic predispositon as well as a trigger.

I think many people can develop a "gluten sensitivity"....but without having the genetic predisposition its very unlikely to ever "turn into" Celiac.

Even if the treatment is the same....one involves an autoimmune attack....and the other does not.

I dont believe that all of the various genes found in people with gluten sensitivity can be associated with Celiac....especially in the absence of positive test results.

I agree 100% with Dr. Fasano on this topic of Celiac vs. Gluten Sensitivity.

[lonewolf]

I still wonder about the whole auto-immune thing though. I don't have Celiac. But I do have psoriasis and thyroid issues - both things that are associated with Celiac. I also have (had?) an auto-immune kidney problem which totally went into remission when I went fanatically gluten-free. (This was NOT a coincidence.) So, if non-Celiac gluten intolerance doesn't involve an auto-immune reaction in the intestinal tract, couldn't it cause an auto-immune reaction somewhere else in the body?

[ArtGirl]

Well, this just confirms what I have already concluded about my own conclusion. Having had gluten-response symptoms for 40 years, if I did have Celiac, I would have expected more damage to have been done and to have been sicker. Eliminating gluten eliminated the symptoms and my gluten-response symptoms (when accidentally CC'd) have progressively gotten less and less severe.

...So, if non-Celiac gluten intolerance doesn't involve an auto-immune reaction in the intestinal tract, couldn't it cause an auto-immune reaction somewhere else in the body?

I wonder that, too. I have low thyroid that has not, however, excalated into anything else, and is slowly getting better. Although diabetes is in my family, I have not developed it and I'm 60 now, with only 4 years of gluten-lite and 2 years of gluten-free. And with 40 years of being gluten-sensitive, I would have thought that more would have happened to me. (I'm not complaining!)

Mind you, I have not had an official diagnosis for anything related to gluten, BUT, I did have symptoms of Sjogren's Syndrome (dry eyes and skin), which did significantly improve after going gluten-free; and my current doctor did agree that what I described was probably Sjogren's.

I'm really encouraged that there has been this level of activity in the medical community to try to understand gluten intolerance and Celiac. The more this kind of research and published reports are brought to the attention of the practicing physicians, the more these doctors are going to suspect gluten to be the root cause of all these "unexplained" symptoms.

[Rachel--24]

I'm really encouraged that there has been this level of activity in the medical community to try to understand gluten intolerance and Celiac. The more this kind of research and published reports are brought to the attention of the practicing physicians, the more these doctors are going to suspect gluten to be the root cause of all these "unexplained" symptoms.

I do think its encouraging that there is some interest in learning more about the differences between Celiac and Gluten Sensitivity. I hope this is something that they will continue to research.

I'm not convinced at this point that gluten is the "root" cause in most cases of gluten sensitivity. I think its often a symptom of other issues that are going on. It could be as simple as an enzyme deficiency....or it can be complicated with several different things contributing (as seen in Autism and other chronic conditions).

I do think that it can only benefit people if the doctors know more about this and are recommending the diet for those patients who have unexplained symptoms. Although I'm not sure if that would happen without having some way to "identify" gluten sensitivity with testing.

The medical community is largely focused on "disease".....and pharmaceutical treatments. Even if non celiac gluten intolerance gets some kind of acknowledgement from certain doctors (like Dr. Fasano)....unfortunately, I think we're still a long way away from having the doctors recommending this diet instead of the medications for IBS and other nonspecific conditions.

[trents]

So now we have "celiac disease", "gluten sensitivity", "gluten intolerance", "latent celiac disease", "refactory sprue" . . . Someone needs to

develop a dictionary for us to keep track of the terminology. It was much easier when we all just had celiac disease.

[dilettantesteph]

or could it be that the tests aren't perfect and that you can have celiac disease and still test negative for the illness?

[raen]

i got so ill i almost died as a teenager, and i still get physically clear siring pain in my abdomen whenever i have gluten. despite going off gluten before getting tested, there is no doubt in my mind i have celiac disease.

while i refuse to get a biopsy, i am so physically sensitive that i can tell my intestines are pretty messed up after only 10 years of noticeable gluten-reaction. i am basically intolerant (to varying degrees) to all possible irritating foods, from teas to onion to plain rice. i almost cant eat without upsetting my stomach at least a little, and its been 6 months of gluten-free, but its getting better. at first i tried to avoid all irritants.. now im adding a few back and forcing myself to just deal with the reaction for the sake of a healthy diet. no one can live on fruit, burgers, and salad, alone.

my immune system has always been so screwed up in so many ways. i dont get every illness, just tonsillitis, sinus infection, ear infection, and every cold and flue that goes around - sounds like IgA deficiency. i also have other confirmed food allergies.

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i was always surprised when i read about "gluten sensitivity" and tried to fallow the diets.. only to find they weren't strict enough, and that my symptoms seemed magnified. this explains alot, i didnt know they were two different conditions!

---

i wonder, if its related to the immune system - so, sensitives get dramatically less physical damage than celiacs?

typically, do celiacs have a milk allergy, and sensitives just have an intolerance?

are you more likely to have immediate relatives with your issues if its Celiac than Sensitive?

do only allergic people get the physical pain?

do only celiacs, or both groups get diabetic symptoms that vanish upon going gluten-free?

do most/all celiacs have a wheat allergy? (before hearing about celiac, i believed i was allergic to wheat, i never considered i may have been right!)

also - i have a serious thing for coffee. whenever my stomach is upset, i crave coffee.. usually coffee causes the upset, but in celiac, could it be helping somehow? like moving the digestive process along faster? if so do sensitives ever crave coffee too for this reason?

[georgie]

or could it be that the tests aren't perfect and that you can have celiac disease and still test negative for the illness?

My betting money would be on this. I tested negative by blood test but have the symptoms of Coeliac including long term symptoms of infertility, and teeth enamel defects. Recently the DQ2 gene was found. I have 3 or 4 other autoimmune diseases....

Was my first Coeliac blood test a false negative. I think so and so does my Dr.

[ravenwoodglass]

or could it be that the tests aren't perfect and that you can have celiac disease and still test negative for the illness?

This was definately the case for me. There is no doubt that I have celiac disease with multiple autoimmune mediated disorders going into remission on the gluten free diet. My not showing up on the blood tests delayed my diagnosis by many painfilled years. The TTg was not in use yet so I might have been positive on that one but there is no way I would do a gluten challenge to find out. I do carry 2 copies of an 'unusual' celiac gene, at least in the US population so perhaps that had something to do with it. My doctors have not waffled at all about the diagnosis even with negative bloods. My children did show up on bloodwork and one with a biopsy. The doctors stated that they were celiac. Some here might disagree and my children might be classified now as gluten intolerant because the autoimmune issues have not shown however there is no doubt in my mind that if they continue eating gluten that they also will someday be classified as celiac.

[ravenwoodglass]

I still wonder about the whole auto-immune thing though. I don't have Celiac. But I do have psoriasis and thyroid issues - both things that are associated with Celiac. I also have (had?) an auto-immune kidney problem which totally went into remission when I went fanatically gluten-free. (This was NOT a coincidence.) So, if non-Celiac gluten intolerance doesn't involve an auto-immune reaction in the intestinal tract, couldn't it cause an auto-immune reaction somewhere else in the body?

Yes it can. You are right that it was not a coincidence that those autoimmune issues resolved gluten free. It is the autoimmune attack that really classifies us as celiac. Folks that are simply gluten sensitive with no autoimmune features may share symptoms but those will be primarily gut related or related to vitamin and mineral deficits. As stated in the article it is the autoimmune aspect of the disease that really makes the difference in classification. Will folks that have only gluten intolerance eventually develop 'true' celiac? The ones who have autoimmune impact will the ones who don't won't. The autoimmune impact can attack any organ of the body.

[Tim-n-VA]

It is easy to confuse clustering effects with causal effects.

For example, if you have a compromised (less than perfect) immune system you could have one or more of the auto-immune systems, for example diabetes and celiac. Neither disease caused the other, both were caused by the compromised immune system. That would be clustering effects.

On the other hand, if you have celiac and your body attacks itself in a manner to affect production of insulin resulting in diabetes, you would have a causal effect.

As the original post stated, none of this matters in terms of deciding what to eat. It does matter in terms of understanding what is going on and developing ways to prevent, treat or just watch out for these other things.

[ArtGirl]

About the only thing that concluding that I'm "intolerant" rather than "celiac" is a bit of peace of mind that if I haven't developed autoimmune diseases by this time after 40 years undiagnosed, I probably won't ever. And a lessening of the fear of developing intestinal cancers.

Other than that, my life is the same as any celiac's. Centered around food and avoiding gluten and food allergens. And the constant striving to improve my immune system which, if anything was damaged by 40 years of gluten, that is it.

[Rachel--24]

I dont think that any tests are perfect 100% of the time. Some people will test negative for different reasons (biopsies missed damage, not enough samples taken, IgA definciency, etc.) and yet still have Celiac Disease.

However, I think that the majority of people testing negative.....test negative because they truelly do not have Celiac Disease.

Celiac is an autoimmune disease....this is what the tests are looking for. If you do not have the autoimmune reaction ....then its just not ever gonna show up in a test that is specific for Celiac Disease.

A person might be extremely sensitive to gluten....and feel tons better without it.....but personally, I dont feel that the tests are to blame for so many people coming back negative for Celiac Disease.

Gluten sensitivity appears to be very prevelant....and more and more people are experiencing the symptoms and yet NOT testing positive for Celiac (the autoimmune reaction).

If someone has impaired enzyme function and cannot properly digest gluten this alone can result in plenty of damage (that is not autoimmune) which can then lead to a leaky gut and all sorts of additional problems....including autoimmune diseases.

Autoimmune disease is associated with Leaky Gut.....so *anyone* having damage to the gut which allows for undigested food, toxins and pathogens to enter the bloodstream...may be more susceptible to developing clusters of autoimmune conditions.

I was diagnosed with both Graves Disease and gluten intolerance. I do not have the genes for Celiac.....nor did I test positive in bloodwork or biopsy. I dont have it (I'm very certain of this)...but nevertheless.....I developed an autoimmune disease (and all sorts of food intolerances).

If gluten is not getting broken down and is causing damage to the gut (inflammation)....removing it can certainly help with healing....and it can calm down the immune system. If Leaky Gut is allowing antigens to pass into the bloodstream *anything* which helps to heal the gut will in turn help the immune system. Alot of things will calm down when the immune system isnt having to deal with gluten and all sorts of other antigens entering the bloodstream.

So yes, non-celiac gluten sensitivity can lead to autoimmune problems.

Having various autoimmune diseases doesnt define Celiac....having an autoimmune reaction in the gut (that is occuring when gluten is consumed) is what defines Celiac Disease. If you dont have that going on....then the tests will not come back positive.

[Rachel--24]

As the original post stated, none of this matters in terms of deciding what to eat. It does matter in terms of understanding what is going on and developing ways to prevent, treat or just watch out for these other things.

I agree with this all of this.

It doesnt matter with regards to gluten because anyone who is sensitive should be avoiding it....regardless of whether or not they test positive for Celiac. However, since "gluten sensitivity" is a different condition....there may be other factors (besides gluten) playing a role.

[MNBeth]

Okay, this is all making my head spin a bit, and I don't have a strong opinion one way or another. But I seem to recall reading lots of testimonies from people who tested negative for celiac at one point, then tested positive later. That's what really makes me wonder...

[Rachel--24]

i was always surprised when i read about "gluten sensitivity" and tried to fallow the diets.. only to find they weren't strict enough, and that my symptoms seemed magnified. this explains alot, i didnt know they were two different conditions!

The gluten free diet is the same for both conditions...they are both equally strict. No gluten.

i wonder, if its related to the immune system - so, sensitives get dramatically less physical damage than celiacs?

I wouldnt say that damage is less. Damage can still be severe....although, the autoimmune attack to the intestines would not be occuring as it does in Celiac. Anything that puts alot of stress on the immune system can ultimately cause alot of harm to the body.

typically, do celiacs have a milk allergy, and sensitives just have an intolerance?

Celias have an intolerance to gluten....and in the beginning stages of the diet (while villi are still damaged and healing) many Celiacs have lactose intolerance. A milk allergy is a totally seperate thing....anyone can be allergic to milk....its not specific to Celiac or gluten sensitivity.

are you more likely to have immediate relatives with your issues if its Celiac than Sensitive?

Celiacs are more likely to have relatives who also have Celiac Disease. There hasnt been enough research on gluten sensitivity to say whether or not this would also be the case for the non-celiac gluten sensitive individuals. Since genetics probably plays a role (to some extent) I would assume that its likely.

do only allergic people get the physical pain?

Neither Celiac Disease or non-celiac gluten sensitivity are "allergies". They are not allergic reactions in either case. But yes, both conditions can cause physical pain.

do only celiacs, or both groups get diabetic symptoms that vanish upon going gluten-free?

I think they would have to do studies on this to answer that question. I would guess that both groups can experience a resolution of symptoms for various conditions.

do most/all celiacs have a wheat allergy? (before hearing about celiac, i believed i was allergic to wheat, i never considered i may have been right!)

Celiac is not a wheat allergy. A wheat allergy is a seperate condition. Its possible to have both though.

also - i have a serious thing for coffee. whenever my stomach is upset, i crave coffee.. usually coffee causes the upset, but in celiac, could it be helping somehow? like moving the digestive process along faster? if so do sensitives ever crave coffee too for this reason?

I'm not sure about this. I've never been a coffee drinker.

[Rachel--24]

Okay, this is all making my head spin a bit, and I don't have a strong opinion one way or another. But I seem to recall reading lots of testimonies from people who tested negative for celiac at one point, then tested positive later. That's what really makes me wonder...

I think gene testing can be helpful since approx. 97% of diagnosed Celiacs carry either DQ2 or DQ8. There's a very small percentage who test positive for Celiac without having either of these genes though. However, its less likely to be Celiac without having either of the main genes.

[georgie]

Okay, this is all making my head spin a bit, and I don't have a strong opinion one way or another. But I seem to recall reading lots of testimonies from people who tested negative for celiac at one point, then tested positive later. That's what really makes me wonder...

The lab report from my Coeliac blood tests said "up to 10% of coeliac patients may have negative serology testing. Suggest further investigation only if there is a high clinical suspicion of coeliac disease."

Sadly my Dr didn't read this at the time and just made me start the gluten-free diet...... In hindsight it would have been a good idea to have a biopsy done despite the negative blood test.....but hindsight is 20/20

For example, if you have a compromised (less than perfect) immune system you could have one or more of the auto-immune systems, for example diabetes and celiac. Neither disease caused the other, both were caused by the compromised immune system. That would be clustering effects.

On the other hand, if you have celiac and your body attacks itself in a manner to affect production of insulin resulting in diabetes, you would have a causal effect.

Its the proverbial chicken and egg story. What causes the clustering of autoimmune diseases...Bad luck ? Weakened immune system ? By what ? If the tests for Coeliac can be less than 100% accurate - it would be wrong to assume a negative test is an accurate result if symptoms, clustering of other autoimmune diseases, and family history suggest otherwise.

[Rachel--24]

The lab report from my Coeliac blood tests said "up to 10% of coeliac patients may have negative serology testing. Suggest further investigation only if there is a high clinical suspicion of coeliac disease."

Sadly my Dr didn't read this at the time and just made me start the gluten-free diet...... In hindsight it would have been a good idea to have a biopsy done despite the negative blood test.....but hindsight is 20/20

I'm assuming they are referring to IgA deficiency....which can result in negative serology in people who have Celiac Disease. This is why the total serum IgA is included in the Celiac panel. Did you have this test?

The prevalence of celiac disease in patients with selective IgA deficiency ranges from 10% to 30%, depending on the evaluated population. This association between celiac disease and IgA deficiency complicates serological testing for celiac disease.

Most laboratories offer IgA- based assays only to accomplish serological testing for celiac disease and monitor response . If IgA deficiency is not excluded, the physician may not recognize a false-negative celiac serological test result attributable to IgA deficiency. Thus, patients with IgA deficiency and celiac disease will remain undetected by the conventional IgA-based serological tests unless IgA concentrations are simultaneously assessed.

Open Original Shared Link

The total serum IgA is an important test and should not be left out when being tested for Celiac Disease.

[veggienft]

It is the autoimmune attack that really classifies us as celiac. Folks that are simply gluten sensitive with no autoimmune features may share symptoms but those will be primarily gut related or related to vitamin and mineral deficits. As stated in the article it is the autoimmune aspect of the disease that really makes the difference in classification. Will folks that have only gluten intolerance eventually develop 'true' celiac? The ones who have autoimmune impact will the ones who don't won't. The autoimmune impact can attack any organ of the body.

This brings the number of wheat-induced autoimmune manifestations to three:

1. Celiac disease ......the intestinal immune system attacking the intestinal lining.

2. Gluten intolerance .......an autoimmune attack against organs in the circulatory system resulting from the intestine "zonulin dumping" its contents into the circulatory system in the presence of gluten.

3. Gluten sensitivity ......a gluten or other opioid antigen attack which results from the intestine "zonulin dumping" its contents into the circulatory system in the presence of gluten. Besides the zonulin dumping, there is no immune response. Prime examples would include type 2 diabetes and high cholesterol.

Any given person may display any single manifestation, or any combination of manifestations.

..

[georgie]

I'm assuming they are referring to IgA deficiency....which can result in negative serology in people who have Celiac Disease. This is why the total serum IgA is included in the Celiac panel. Did you have this test?

Yes... My Total IgA was 1.44 g/L and this lab says <4.00 is normal. But I was eating Gluten light at the time as well... I am almost certain my villi are/were damaged due to the subsequent dairy / lactose problem. That is now healing to a certain degree...

As the testing improves there are articles like this coming through. I found this interesting ...that people with positive blood tests can have a normal biopsy ...but which now with better techniques of testing ....may have the pre mucosal changes evident...

Recently, doctors have begun to embrace the idea that some patients with positive celiac blood tests may have mucosal lesions that are too small to appear on routine histopathological analysis.

https://www.celiac.com/articles/21646/1/Hig...ccur/Page1.html

So where does this leave people that may have had a false negative blood test and a negative biopsy ( using basic testing and assuming that their Dr even DID a biopsy... ). Are they undiagnosed Coeliac or only Gluten Intolerant....cc and crumbs and "this bit won't hurt me" allowed ... ?

[Rachel--24]

Yes... My Total IgA was 1.44 g/L and this lab says <4.00 is normal. But I was eating Gluten light at the time as well...

The total serum IgA is a different test than the antigliadin IgA.

The total serum IgA is a test to check that you are producing normal amounts of IgA. If someone is IgA deficient the Celiac tests (which are checking for IgA antibodies) are not going to be reliable...and IgG antibodies need to be checked instead.

Eating gluten light shouldnt affect the results of the total serum IgA...this is not a test for Celiac Disease....but a test to make sure that the Celiac tests will not result in false negatives due to IgA deficiency.

[georgie]

Thanks for explaining that. The labwork looked as clear as mud IgA and IgG Antibodies were also tested. And the disclaimer was for all tests.

[dilettantesteph]

Here is my theory. I think that celiac disease is actually a family of diseases all of which include gluten intolerance. The fact that different genes are responsible for it is consistent with that. Different forms of the disease have difference levels of tolerance to gluten, different symptoms, and differences in test results. I don't think that there are just two forms. I think there are many. It seems inaccurate to say that you don't have celiac if you test negative since so many people have negative tests followed by positive ones. This in