Celiac Disease Vs. Gluten Intolerance

[candi1008]

I was diagnosed with Celiac Disease last week. I have a friend who is Gluten intolerant. When I told her that I had been diagnosed with celiac disease, she had no idea what it was. Is there a difference between being gluten intolerant and having celiac disease? Just a random question.

[Mango04]

Yes, there are conditions other than celiac that can cause gluten sensitivity. It is also possible to have non-celiac gluten intolerance.

Here's an explanation by Danna Korn that might help:

There are several conditions that fall into the "gluten-sensitivity spectrum."

At one end, we have wheat allergies. These are simple "IgE-mediated" allergies - easy to test for, and definitively diagnosed.

Then we have what people call "gluten sensitivity" or "gluten intolerance." Some of these people may actually have celiac disease or dermatitis herpetiformis, but because their testing methods weren't specific for celiac disease - or because their health care practitioner didn't know to look for celiac disease - they were told they have a gluten sensitivity or intolerance. Some people who fall into this category do not test positive for celiac disease - but are considered "sub-clinical," meaning it's likely that they would test positive in the future, if they were to continue to eat gluten. Others may simply be sensitive to gluten, in which case they need to avoid it, too.

At the other end of the spectrum is celiac disease or dermatitis herpetiformis DH. (Because it's cumbersome to refer to both conditions, we'll refer here to celiac disease only - for more information on DH, see Celiac disease/dermatitis herpetiformis.) Celiac disease is a genetic autoimmune condition. Because it is genetic, it's important for family members to be tested, too - even in the absence of symptoms. People with celiac disease must strictly comply with the gluten-free diet - when they do, health and vitality is fully restored!

For more information on the entire gluten-sensitivity spectrum, as well as detailed explanations of allergies, intolerances, sensitivities, and disease, see Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living by Danna Korn.

[Tim-n-VA]

There is an explanation at Open Original Shared Link disease.htm

[grommet]

There is an explanation at <a href="Open Original Shared Link disease.htm" target="external ugc nofollow">Open Original Shared Link disease.htm</a>

This makes interesting reading, and is one fo the first things I've seen that differentiates between GI and celiac disease.

(I'm in the UK and Dr's here don't seem to want to diagnose GI. You're either coeliac or it's all in your head.)

However what I don't understand is this :

"Since wheat allergy and gluten intolerance are not autoimmune conditions, people who have food allergies and intolerances are not at increased risk to develop an autoimmune condition over the general population's risk."

If GI is not an autoimmune thing then what causes the non gastro symptoms i.e. the bone aches, the tiredness, the migraines, the brain fog, miscarriages, fits that some people have. If it's not a leaky gut issue then how come there seems to be malabsorption issues.

Ho hum...... still confused.

G

[Nancym]

Odd, wonder why they say it isn't autoimmune related, it most assuredly is. That's what Dr. Fine's (Enterlab) test looks for, antibodies to gliadin and intestinal ttg, both of which are autoimmune responses.

[Tim-n-VA]

Odd, wonder why they say it isn't autoimmune related, it most assuredly is. That's what Dr. Fine's (Enterlab) test looks for, antibodies to gliadin and intestinal ttg, both of which are autoimmune responses.

The problem, based on my limited experience, is that gluten intolerance is not a phrase that has a standard definiton. The article seems to take a more narrow view of GI being those gluten reactions that don't clearly fit the celiac or allergy definition. If Enterlab is testing for antibodies, they are testing for either celiac or an allergy which aren't part of this narrow view.

Many on this board use GI as an umbrella term that includes allergy, celiac and all of the miscellaneous things that happen to some people who consume gluten. In that sense, Enterlab is testing for GI.

I can see the benefit of both views but it can cause confusion.

[Elaine Allen]

I have only been diagnosted with Celiac for approximately 2 months. I did not know that you can have a gluten intolerance and not have Celiac. Interesting. I just thought that if you are

intolerant to gluten that mean you have Celiac.

I have a lot to learn.

[VydorScope]

I was diagnosed with Celiac Disease last week. I have a friend who is Gluten intolerant. When I told her that I had been diagnosed with celiac disease, she had no idea what it was. Is there a difference between being gluten intolerant and having celiac disease? Just a random question.

In some cases its a distinction with out a difference. In other cases it makes all the difference in the world

Officially you can only have celiac disease (in USA at least) if you have a positive biopsy. If your not merely far enough along to have acquired enough damage to show up in a biopsy (a good thing!) you would be labeled as GI instead of celiac disease even though you do have celiac disease.

In other cases there are NON-celiac disease things that can cause a reaction to gluten, and they are not celiac disease, and sometimes even curable. In those cases you would also be labeled GI.

So is there a difference? Maybe, depends on WHY you are reacting to gluten. Either way, the diet is the same.

[CarlaB]

So is there a difference? Maybe, depends on WHY you are reacting to gluten. Either way, the diet is the same.

I agree with this statement. I am gluten intolerant and am quite sensitive to small amounts of gluten, yet my gluten intolerance is most likely a result of my Lyme Disease.

Some people with gluten intolerance are better described as having "pre-celiac" as they are likely to have developed damaged villi in the future. These people would see improvement on the gluten-free diet, whereas people like me only partially improved on the gluten-free diet.

In my opinion, if someone doesn't have all their symptoms resolve on the gluten-free diet, they need to start looking for what else is wrong -- other food allergies, hidden gluten, thyroid, candida, Lyme, gall bladder issues, mercury toxicity, etc.

So, in my opinion, gluten intolerance describes a whole spectrum, with celiac disease at one end, and a gluten intolerance secondary to another condition at the other ... with all levels in between. In the end, we all have to eat gluten-free.

[Kaycee]

In NZ we call gluten intolerance, gluten sensitivity, so sometimes I don't quite understand what is being said and probably say the wrong thing.

Anyway we have our own Dr Gluten here who seems to specialise in all things gluten, particularly gluten intolerance/sensitivity. Have a look at his web site and see what you think.

Open Original Shared Link

Cathy

[grommet]

In NZ we call gluten intolerance, gluten sensitivity, so sometimes I don't quite understand what is being said and probably say the wrong thing.

Anyway we have our own Dr Gluten here who seems to specialise in all things gluten, particularly gluten intolerance/sensitivity. Have a look at his web site and see what you think.

Open Original Shared Link

Cathy

He did a radio broadcast on Monday on Radio NZ. The link is on his "news" page. It's approx 12 minutes long and very interesting.

[grommet]

I have only been diagnosted with Celiac for approximately 2 months. I did not know that you can have a gluten intolerance and not have Celiac. Interesting. I just thought that if you are

intolerant to gluten that mean you have Celiac.

I have a lot to learn.

I too thought I had celiac disease. I had plenty of symptoms, sickness, diarrhoea, fatigue, aching bones, migraines, miscarriage, 3 other family members with similar symptoms that have been going on for years and years. Various diagnosis including IBS and Chronic Fatigue Syndrome. I have done an exclusion diet and know I react very strongly to the slightest amount of gluten.

Some of us have had all the tests. And guess what - the medical profession can find nothing. There's nothing wrong with any of us!

WE KNOW we have a gluten intolerance but because it is not labelled as celiac disease you initially feel somehow that it is all in your head.

I know the diet makes me feel better - but I can't become a member of Coeliac UK, I don't get the food directory updates, I don't get follow-up check-up re osteoporosis (a family member has this) anaemia, free prescriptions, etc. because I haven't got a label. So I just have to take good care of myself :-)

This group is fairly open to the fact that there is a broad spectrum of gluten intolerance. Not all groups are.

[Fiddle-Faddle]

This group is fairly open to the fact that there is a broad spectrum of gluten intolerance. Not all groups are.

That just boggles my mind that people don't get that celiac disease is just gluten intolerance gone unchecked.

It's like saying that you are only allergic to peanuts if you have a severe anaphylactic reaction, and if you only have a mild reaction, you're not!

True, celiac and gluten intolerance are not allergies. But the peanut allergy comparison is valid, as in both cases, if you continue to eat the offending substance, you end up with the severe reaction (villi damage in the case of GI, anaphylactic shock in the case of a peanut allergy).

Also, there is now research PROVING that celiac can damage parts of the body other than villi, such as neurological and skin (not all sufferers of DH have villi damage, but they officially have celiac).

If you ask me, the people who think that celiac is only celiac with a confirmed biopsy have something wrong with their brains (even if they don't have celiac)!

[Fiddle-Faddle]

I have only been diagnosted with Celiac for approximately 2 months. I did not know that you can have a gluten intolerance and not have Celiac. Interesting. I just thought that if you are

intolerant to gluten that mean you have Celiac.

I have a lot to learn.

Actually, I think you are close to the real truth. Having gluten intolerance but not celiac (as defined by villi damage) only means that you haven't YET damaged your villi.

There are people on this board who do not have the celiac genes, yet have had positive biopsies.

I think it's similar to the concept of autism--there is a broad spectrum, from severe autism to mild autism to Asperger's Syndrome to ADHD and ADD. I've heard others describe it as similar to cancer--you can be in the beginning stages or the end stage.

As far as confirming villi damage, the idea of defining celiac only by biopsy is ridiculous--with 22 feet of intestines and villi damage being patchy unless you are practically dead, a biopsy is hit-or-miss at best.

Bloodwork and dietary response are more accurate, more practical, and safer.

[Tim-n-VA]

That just boggles my mind that people don't get that celiac disease is just gluten intolerance gone unchecked.

It shouldn't. If you go to web sites for advocacy groups or just read this board for a while you'll see that many people believe that you can have reactions to gluten for many different reasons, some that are not related to celiac. There was a thread on this board a few months ago where the celiac/allergy, celiac/no allergy, non-celiac/allergy combinations were at least proposed as possibilities.

The variety of reactions that people have could just be explained by us all be different but they could be explained by different types of reactions at the immune system level.

At least some people want the celiac label because they have family/friends who don't take an "intolerance" as serious as a disease.

Bottom line, why you say "gluen intolerance" you have a definite definition of that phrase but that isn't universally accepted. Not that it is wrong but it definitly isn't universal.

[Fiddle-Faddle]

It shouldn't. If you go to web sites for advocacy groups or just read this board for a while you'll see that many people believe that you can have reactions to gluten for many different reasons, some that are not related to celiac.

I understand what you are saying, but if we are defining celiac by gluten-induced villi damage, then it's a moot point what is causing the reaction to gluten; the result is ultimately the same. If you are lucky and don't have doctors who dither for 11 years before looking for it, you might catch it before there is extensive villi damage.

Certainly, it's important to find out what is causing the reaction to gluten. If it's induced by a Lyme infection, then that would need to be treated. But even with Lyme-induced gluten intolerance, you could still end up with damaged villi and hence an official diagnosis of celiac disease.

You can call it celiac disease, gluten intolerance, gluten-induced enteropathy, sprue, whatever you want, but whatever you call it, it boils down to a gluten-induced autoimmune disorder that can destroy your body and your life.

And whatever you call it, it's a pain in the patootie!

[Mango04]

You can call it celiac disease, gluten intolerance, gluten-induced enteropathy, sprue, whatever you want, but whatever you call it, it boils down to a gluten-induced autoimmune disorder that can destroy your body and your life.

And whatever you call it, it's a pain in the patootie!

I agree, but isn't it possible to have gluten sensitivity that will not ever result in villi damage (even though it may destroy the body in other ways?)

[grommet]

I understand what you are saying, but if we are defining celiac by gluten-induced villi damage, then it's a moot point what is causing the reaction to gluten; the result is ultimately the same.

I'm not disagreeing with anything you say by any means, and I'm not asking you to answer this but, what I can't fathom out is this.

If we are defining coeliac by gluten-induced villi damage, then why does the villi damage make a difference? If you don't have celiac disease, and don't have villi damage, but still have gastro as well as neuro issues, malabsorption issues etc what IS the difference.

I originally thought it was the fact that the villi were damaged meant that your body could not absorb the nutrients and there were other knock on effect to this. But there seems to be malabsorption issues with GI not just celiac disease.

Is it purely that the villi damage means you can be more susceptible to stomach/bowel cancers, or does the fact that you are not absorbing make you more susceptible to the more serious illnesses. If that is the case then you are as susceptible if GI as much as you are if you have celiac disease.

I was initially glad I wasn't diagnosed with celiac disease. But why am I glad?

I firmly believe that my migraines are because of lack of magnesium. When I am gluten-free and taking a magnesium supplement I don't have migraines. When I take Iron tablets I can SEE (if you know what I mean) that my body is absorbing the iron. When I accidentally eat gluten I can see that I'm not absorbing iron. I can't see that I'm not absorbing calcium - my mum obviously wasn't somewhere along the line as she has osteoporosis. I feel that I'm not absobing Vitmain B stuff when i eat gluten, but know when I'm gluten-free and taking Vitamin B complex supplement that I'm not as tired. What else am I missing? I'll never find out cos I won't get checked cos I haven't got celiac disease.

I just go round and round with this sometimes.....

[Fiddle-Faddle]

I agree, but isn't it possible to have gluten sensitivity that will not ever result in villi damage (even though it may destroy the body in other ways?)

Absolutely, which makes me wonder why the focus is on celiac instead of gluten sensitivity or gluten intolerance. Villi damage is just one manifestation.

[Fiddle-Faddle]

I originally thought it was the fact that the villi were damaged meant that your body could not absorb the nutrients and there were other knock on effect to this. But there seems to be malabsorption issues with GI not just celiac disease.

Perhaps one problem is that the doctors assume that if villi in the spots they've biopsied are fine, then you have no villi damage at all. But it seems that malabsorption problems begin before the villi get to the point where the damage is visible to the naked eye, plus villi damage can be patchy. So diagnosing by biopsy is just plain inaccurate unless your villi damage is severe and extensive.

I still think it may be as simple as celiac being advanced GI that has targeted the intestines, either in combination with other things like skin, joints, thyroid, brain, pancreas, or just the intestines.

As someone remarked above, an awful ot of people don't take the words "gluten intolerance" seriously, but they do take "celiac disease" seriously. Perhaps the definition of celiac needs to be officially expanded to include all kinds of gluten intolerance.

But when you think that in this country, it takes an average of 11 years just to get diagnosed with celiac, it's probably going to take a whole lot longer than that for the MD's to figure out that what they were taught in medical school about gastro problems is WRONG.

Let's see--if you have symptoms severe enough to seek medical help, and it takes 11 years to get diagnosed, and you keep consuming gluten for those 11 years, it seems logical that 11 years of consuming gluten (AFTER symptoms have gotten bad!) are going to result in villi damage, even if you didn't have villi damage at the beginning of the 11 years.

[Tim-n-VA]

Fiddle-Faddle - Most of your discussion focused on eventual villi damage. Do you think it is possible to have a "traditional" gluten allergy that causes some symptoms but never causes villi damage even with continued gluten consumption? If the answer is yes, there needs to be the distinction. If the answer is no, all of these terms can be used interchangably.

[lonewolf]

I'm one who hasn't been diagnosed with Celiac, and has been told that I can't have it because I don't have the right genes. When I look at the symptoms listed on this website, and the associated conditions, I have MANY of them. I had dental enamel defects as a child, have thyroid issues, had arthritis (totally cleared up after gluten-free/CF), have psoriasis (better since gluten-free), was diagnosed with IBS, have an autoimmune kidney disease that's totally in remission (after going fanatically gluten-free), and the list could go on.

My theory is that there are LOTS of people who are sensitive to gluten. People who develop autoimmune conditions and all the other Celiac problems. All will share many symptoms, but some develop neurological problems, some totally wipe out their villi, some damage their kidneys, some have DH, etc. The only "reliable" tests right now are for damaged villi and DH lesions, so all the others are told that they don't have Celiac and most are told that they don't have a problem with gluten.

I think that those who develop full-blown villi damage are genetically succeptible to that - that's why the DQ2 and DQ8 are so closely aligned with Celiac. Maybe at some point in the future, researchers will discover that people with DQ7 are at risk for kidney problems due to gluten, that DQ9 has it's own set of problems, etc. Right now, they just don't know enough. To say that Celiac is "worse" somehow than "just" gluten intolerance/sensitivity is short-sighted.

I might not have the Celiac label, but believe me, it's not worth the risk of having my kidney disease (or arthritis) come out of remission just to have a little gluten because I'm "only" gluten intolerant.

[Fiddle-Faddle]

Fiddle-Faddle - Most of your discussion focused on eventual villi damage. Do you think it is possible to have a "traditional" gluten allergy that causes some symptoms but never causes villi damage even with continued gluten consumption? If the answer is yes, there needs to be the distinction. If the answer is no, all of these terms can be used interchangably.

Well, if you are talking about a true allergy, then you are talking about histamine and IgE involvement, which are both tested and diagnosed differently from the celiac panel, right? And the symptoms tend to be different than gluten intolerance/celiac, don't they?

And we really don't know for sure that people who were told that they had no villi damage actually had no villi damage, do we?

The textbooks insist that people with DH were shown to have classic celiac villi damage (hence the definition that if you have DH, you automatically have celiac)--but I have seen posts from people who had negative villi biopsies but positive skin biopsies. So either the textbooks are wrong or the doctors who found negative villi results were wrong in how they read the biopsies or they simply biopsied unaffected areas and missed the affected ones.

[Tim-n-VA]

But that is the point of this whole thread. You are using gluten intolerance and celiac as interchangable terms. The article I linked to in the second or third message makes a distinction.

The point is that since different people use the same term for different situations, it is confusing.