I Still Don't Understand The Difference Between Celiac Disease And Gluten Intolerance

[schilds]

Sorry, I just did a quick search and see pages and pages and pages of discussion. A mod can delete this thread if you like! Thanks to yall who responded so quickly, but no need for more responses! It would be wasting your time since there's so much already on it.

Thanks again ladies!

[Lisa]

After 5 months of trying to differentiate between the two, I still don't understand.

Is celiac disease differentiated from gluten intolerance in testing? I know celiacs can't eat gluten obviously. I assume gluten intolerant people have similar symptoms, but is there less damage? Does the severity of symptoms differentiate between the two?

I've been gluten free for over 5 months, with incredible results, so it doesn't much matter. I had overt malabsorbtion symptoms, along with brain fog, diagnosed "ADD" (yeah right) at 15 yrs old, and reoccuring depression since childhood, including stiffling anxiety (all of which have DISAPPEARED). Life-changing.

So it doesn't matter to me if I ever get officially diagnosed (no insurance anyway).

But this one point on the difference between celiac disease and gluten intolerance still bothers me.

This is according to my understanding. Celiac Disease is triggered by an autoimmune response from gluten and due to that response damage will occur in the small intestines.

A gluten intolerance will creat the same symptoms but there is no autoimmune response and no damage will occur. Although, it is often thought to be a pre-curser to Celiac Disease.

[Fiddle-Faddle]

Lots of arguments on this subject.

I'm in the camp that believes that in most cases, gluten intolerance is just celiac disease before there is enough damage to the villi to qualify for the diagnosis of celiac (it's defined by the villi damage).

"If it walks like a duck, quacks like a duck, poops like a duck...."

[Fiddle-Faddle]

This is according to my understanding. Celiac Disease is triggered by an autoimmune response from gluten and due to that response damage will occur in the small intestines.

A gluten intolerance will creat the same symptoms but there is no autoimmune response and no damage will occur. Although, it is often thought to be a pre-curser to Celiac Disease.

But many people with DH (which is an automatic diagnosis of celiac) do NOT have the villi damage.

And the number of people with gluten intolerance (that has not been officially diagnosed as celiac) with autoimmune disorders such as thyroid disease, RA, Lupus, diabetes, etc. is huge.

The big problem, as I've said so often that you are all sick of hearing me say it, is that the definition of celiac should not be by villi damage, as that is often patchy and too easy for the doctor to miss. Furthermore, waiting for someone with adult onset of celiac to develop villi damage before diagnosing it as celiac is like waiting for a peanut-allergic person to go into anaphylactic shock before diagnosing him with a peanut allergy. Or like waiting for someone to have a heart attack before diagnosing him with high blood pressure. If the disease is there, we don't need to wait for ultimate damage before we say it is there!

There are people who have gluten intolerance caused by something else (Lyme disease, mercury toxicity, and probably other things I don't know); from what I've read, these people have symptoms that get somewhat better on the gluten-free diet, but the gluten-free diet isn't enough to get them healthy again. (And I wonder if refractory sprue might fall into that category...)

[CarlaB]

I think the reason for the confusion is that there is no official definition for gluten intolerance and there are different levels of it and reasons for it.

I think some are truly pre-celiac and it's only a matter of time before they are full-blown celiacs. If it weren't for them doing research on the internet, the docs wouldn't figure out what's wrong until they have celiac disease.

Some just don't tolerate gluten for some other reason. Gluten is a difficult protein and if you have stress on your immune system from something else, you might show a gluten intolerance. This was what I had.

I have Lyme Disease and as a result could not tolerate the smallest amount of gluten. Even a crumb or contamination would make me sick for days, just like a celiac. I tested negative for celiac and don't have the gene, yet I would have the full-blown systemic reaction just like someone with celiac.

Now that the Lyme is getting better, I can tolerate gluten again.

I tested positive with Enterolab - IgA 60, Ttg 30. So I was having a real reaction. I think it was because my immune system was in overdrive. I'd love to be tested again to show I'm having no reaction, but it's not worth the $300 to find out what I already know from my dietary response.

I've been back on a normal diet for several months now.

[Fiddle-Faddle]

Carla, you've done so much research on this, I'm sure you do know what you are doing!

I'm just worried that celiacs/gluten intolerants will think from reading your post that eating gluten without a reaction means that they are fine and can eat gluten again, and THAT'S NOT THE CASE FOR CELIACS.

For many, once the damage to the villi heals, you don't react to the gluten at first--but eventually the villi do become damaged again, with or without a reaction. I've read posts from people with biopsy-diagnosed celiac who swear they never had intestinal problems (and others who do not have the so-called celiac genes, but who still had positive biopsies).

Gluten challenge can rule celiac in, but not out.

[CarlaB]

I'm just worried that celiacs/gluten intolerants will think from reading your post that eating gluten without a reaction means that they are fine and can eat gluten again, and THAT'S NOT THE CASE FOR CELIACS.

That's why I tried to make the point that my gluten intolerance was secondary to another infection, that it was real, and that I've been back on gluten for months. My health is still improving.

I certainly did not intend to come across as saying those with gluten intolerance or celiac as a primary problem would ever be able to eat gluten again. Rather, I was trying to show that there are different reasons for an intolerance. It seems relevant to this discussion.

I worked very hard to heal my leaky gut. I had a multitude of gut problems ... bacterial overgrowth, none of the good bacteria, tapeworm, parasites, etc. My leaky gut and Lyme Disease was causing all my food issues.

For a celiac it's the other way around .... the gluten causes the leaky gut. Once the gut heals because of the gluten-free diet, then a celiac won't usually have the dramatic gluten reactions, but that does not mean a celiac can eat gluten again ... gluten will cause the leaky gut to come back, gluten will cause damage to the intestines again.

Whereas the damage to mine seems to have been caused by other things.

[rkd]

Carla, you've done so much research on this, I'm sure you do know what you are doing!

I'm just worried that celiacs/gluten intolerants will think from reading your post that eating gluten without a reaction means that they are fine and can eat gluten again, and THAT'S NOT THE CASE FOR CELIACS.

For many, once the damage to the villi heals, you don't react to the gluten at first--but eventually the villi do become damaged again, with or without a reaction. I've read posts from people with biopsy-diagnosed celiac who swear they never had intestinal problems (and others who do not have the so-called celiac genes, but who still had positive biopsies).

Gluten challenge can rule celiac in, but not out.

Sorry to complicate things, but, I am Gluten Intolerant, I have hypothyroidism and Fredriech's Ataxia (an autoimmune disease). We (the doctors, my family and myself) don't know what is causing what-- it's like asking which came first, the chicken or the egg.

I had abnormally high levels of the antibody that processes gluten, now it's all normal with the diet, but I need to stay on the diet for now, probably forever...

If the "experts" are confused (most of the many docs I have seen are pretty clueless), then how can we really understand? It's VERY FRUSTRATING!! My illness has been called "multi-factoral" by my doctor (awesome Neurologist at UCLA named Susan Perlman).

Hope this sorta helps people sorta understand! :)

[grommet]

This is according to my understanding. Celiac Disease is triggered by an autoimmune response from gluten and due to that response damage will occur in the small intestines.

A gluten intolerance will creat the same symptoms but there is no autoimmune response and no damage will occur. Although, it is often thought to be a pre-curser to Celiac Disease.

This used to confuse me - the "no autoimmune response ". I'm gluten intolerant (negative biopsy). I have no other autoimmune diseases causing a leaky gut, but I definitely have what I would call an autoimmune response. e.g. twitchy legs, nights sweats, brain fog, aching joints, depression, extreme fatigue, brain fog, sometimes migraine. I also have malabsorption issue when eating gluten.

I have seen some recent papers on this but can't just find them.

Perhaps I really am pre-coeliac but I'll never know.......

I think the difference is one has caused visible gut damage - the other hasn't ...... yet.

[CarlaB]

e.g. twitchy legs, nights sweats, brain fog, aching joints, depression, extreme fatigue, brain fog, sometimes migraine. I also have malabsorption issue when eating gluten.

Have these symptoms gone away completely on the gluten-free diet?

[Lisa]

This used to confuse me - the "no autoimmune response ". I'm gluten intolerant (negative biopsy). I have no other autoimmune diseases causing a leaky gut, but I definitely have what I would call an autoimmune response. e.g. twitchy legs, nights sweats, brain fog, aching joints, depression, extreme fatigue, brain fog, sometimes migraine. I also have malabsorption issue when eating gluten.

I have seen some recent papers on this but can't just find them.

Perhaps I really am pre-coeliac but I'll never know.......

I think the difference is one has caused visible gut damage - the other hasn't ...... yet.

A negative biopsy certainly does not rule out Celiac. The location of the biopsies can be hit or miss. I had six biopsies and two were positive.

[Tim-n-VA]

Has anyone ever seen a clinical definition of gluten intolerance? That might be the source of the problem.

The definitive (gold standard) test for celiac is the positive biopsy. It seems that people are confusing the concept of the definitive medical test with the condition. It has to do with levels of certainty.

An example might help. If someone has celiac but has been gluten free they will not have a positive test but they still have celiac. The condition and the test results are related but not the same thing.

[tired47]

Carla,

Give us some info on how you "healed" your leakey gut sydrome,ect. So far all my tests are negative (negative biospies, negative bloodwork, still waiting on gene test). I am following the gluten free diet for about 1 month and am not feeling better. My Dr. believes my malabsorption problems were due to overuse of antibiotics ( multiple megadoses for H pylori). We all would love to hear what you did to help yourself get better. Thanks.

[CarlaB]

Carla,

Give us some info on how you "healed" your leakey gut sydrome,ect. So far all my tests are negative (negative biospies, negative bloodwork, still waiting on gene test). I am following the gluten free diet for about 1 month and am not feeling better. My Dr. believes my malabsorption problems were due to overuse of antibiotics ( multiple megadoses for H pylori). We all would love to hear what you did to help yourself get better. Thanks.

Well, it's a long story .... but I'll try to give you the short, relevant version.

I was losing a pound per week, had fatigue, brain fog, excessively tired, insomnia, joint pain, muscle aches, night sweats, air hunger, stomach cramps, constant diarrhea, etc. It was also visibly obvious that I was not fully digesting all my food. So, I had blood work done for celiac disease. All came back normal. Had the biopsy and colonoscopy, all normal. I went gluten-free anyway and saw some improvement.

I went dairy-free, soy-free and corn-lite for six months. Still did not get well.

Eventually through this site I discovered Lyme Disease, which can cause severe gut problems, particularly bartonella.

I started treatment for Lyme, but the gut trouble continued. My doctor did a parasite/bacteria test and found that I had an overgrowth of citrobacter and klebsiella, and no bifidus or e-coli.

So, I was put on Cipro and got better. After 21 days, I was taken off the Cipro and it came back. So I started oil of oregano, uva ursi, and plant tannins. I also was taking Theralac, Ultra Flora, and VSL#3 (probiotics). It slowly got somewhat better.

This whole time I was also on heavy meds for Lyme Disease.

Eventually I found a product called Humaworm (www.humaworm.com) that mentioned it was good for the bacteria I had plus some. I tried it and passed a large tapeworm!

Around the same time as the Humaworm, my doctor put me on Levaquin for my bartonella, which also causes GI issues.

ALL my GI problems went away completely between the Humaworm and the Levaquin.

Looking back, I think it was the bacterial overgrowth, lack of good bacteria, parasites, and bartonella causing my GI problems.

Of course, it won't be the same for everyone. But that is how I healed my leaky gut over a period of several months.

Now I can eat anything and don't have any GI issues anymore.

I want to mention again ... I do not have celiac disease. Someone who has celiac disease, might still have other issues and need to heal leaky gut, but won't be able to eat gluten again.

[grommet]

Have these symptoms gone away completely on the gluten-free diet?

Yes - every symptom (apart from the migraines). There is a definite pattern when I've eaten gluten.

The first indication that I've eaten gluten is twitchy legs. Then the burping then the feeling sick, then night sweats that night, sicknss and D the following morning, (when I can wake-up/get up because of the tiredness), then the brain fog and aching joints.

The migraines I am left with are hormonal migraines and I have occasional nights sweats around the time of my period but nowhere near as bad as when I've eaten gluten.

[grommet]

A negative biopsy certainly does not rule out Celiac. The location of the biopsies can be hit or miss. I had six biopsies and two were positive.

Oh - I agree, that's true. I was partly gluten-free and had negative bloods, I did the gluten challenge and had negative biopsy. I have now been gluten-free for 2 years, and would not do another challenge, so I'll never have another biopsy and will therefore never get a diagnosis. So I will never be diagnosed Coeliac by the gold standard.

Gluten intolerant as a diagnosis it is (by me - consultant wouldn't commit to any diagnosis).

[darlindeb25]

You can be pre-diabetic and not be diabetic. I think being gluten intolerant is simply being, pre celiac. When you are pre-diabetic, you have to adjust your diet, or soon you will be diabetic. When you are gluten intolerant, you have to be gluten free, or, in time, you will have full blown celiac disease too. That is my belief. I think celiac disease has stages, just as diabetes does.

I also feel there are different types of celiac's. There are those of us who are intolerant of, lets say, the simple glutens: wheat, rye, and barley. Then, you have those of us who can't have oats, next, will be the ones who can't have soy--until you get to the far range of those who can't have any grains. The list keeps growing, no grains, no nightshades, and on and on. When I read all the threads of people with similiar problems with celiac disease as the base, it stands to reason that celiac IS the common denominator and we are all just different types of the disease. One day the scientist will beable to make 2 + 2=4 too, I hope. They now realize there are many more genes involved then they previously thought.

My sister and dad are celiac too. They can both have other grains, I can't. My mom will stubbornly look at me and say, "Soy is not a gluten, you can eat it!" Well, I can't, my dad can and my sister can, so therefore, I should, in her mind anyways, but it doesn't always work that way. I keep saying I wish I was a "normal" celiac! As far as I am concerned, going without wheat, rye, and barley was the easy part, living without any grains, no nightshades, no red meat, no shellfish--now this is testing my limits!!!

[CarlaB]

Yes - every symptom (apart from the migraines).

If your health symptoms resolve on the gluten-free diet and stay resolved, I'd say you're one of those people where it doesn't matter if it's gluten intolerance or celiac, you can't have gluten!

If they come back though, that would mean you need to keep looking for what the problem is.

[Nancym]

Doctors are confused too so you're not alone.

Coeliac disease is a chronic immune-mediated disorder that primarily affects the gastrointestinal tract. There is an inflammatory response in the intestine to the ingestion of gluten which improves with a gluten-free diet. Many patients, especially adults, may be asymptomatic or have only extraintestinal symptoms at onset without any of the classical coeliac symptoms. In the last two decades there have been increasing numbers of reports describing neurological complications of coeliac disease, especially ataxia, peripheral neuropathy and epilepsy. This literature has become quite controversial, with disputes over the definition of coeliac disease and gluten sensitivity, whether neurological complications are caused by coeliac disease or are epiphenomena, and whether the proposed complications respond to a gluten-free diet. This review uses an evidence-based approach to critically assess this literature and provides guidelines for the evaluation and management of these patients.

PMID: 18344378

So doctors are arguing over what constitutes celiac disease too. The current narrow definition is villious atrophy. Ok, but what about the skin disorder DH? It isn't celiac disease but it is caused by eating gluten in gluten sensitive people. Then they're beginning to find a whole host of other areas eating gluten harms people, so what do we call that? So far they're finding involvement in: Heart, liver, brain, immune system (autoimmune), eyes (I think) and probably other organs. Yet the intestines may or may not have villious atrophy.

I think anyone that studies this much must have a pretty good notion that celiac disease is just a fragment of a whole spectrum of issues caused by gluten sensitivity.