Can Symptoms Differentiate Between Celiac Disease And Gluten Intolerance?

[nasalady]

Are there any symptoms (besides DH) that are ONLY found in those with celiac disease and are not found in those who are non-celiac gluten-sensitive (NCGS)? For example, are mouth sores/canker sores found only in those with celiac disease?

Just wondering....I suspect that the answer is "no, we wish it were that simple!", but I wanted to ask anyway!

JoAnn

[Fiddle-Faddle]

Nope--all symptoms of celiac can appear as NCGI.

One reason for this is that even for biopsy-diagnosed celiacs, BEFORE there is enough villi damage to give the so-called "gold standard" diagnosis of celiac, there are almost always symptoms, and usually positive results for the blood tests. But most doctors call that NCGI instead of early-stage celiac. (Many of us think that those doctors are totally wrong, but there are some who believe that celiac is ONLY when you have damaged villi.

It can be confusing; other conditions besides for celiac can cause damaged villi. And, as you know, DH sufferers can have totally UNdamaged villi.

You might try posting a separate thread about mouth sores, to see if those resolve for ALL celiacs on a gluten-free diet, or if there is some separate cause. Of course, even with a separate cause, gluten could be acting as the catalyst.

[nasalady]

Nope--all symptoms of celiac can appear as NCGI.

One reason for this is that even for biopsy-diagnosed celiacs, BEFORE there is enough villi damage to give the so-called "gold standard" diagnosis of celiac, there are almost always symptoms, and usually positive results for the blood tests. But most doctors call that NCGI instead of early-stage celiac. (Many of us think that those doctors are totally wrong, but there are some who believe that celiac is ONLY when you have damaged villi.

It can be confusing; other conditions besides for celiac can cause damaged villi. And, as you know, DH sufferers can have totally UNdamaged villi.

You might try posting a separate thread about mouth sores, to see if those resolve for ALL celiacs on a gluten-free diet, or if there is some separate cause. Of course, even with a separate cause, gluten could be acting as the catalyst.

Thanks! The reason that I ask about this is that my GI doctor has concluded his investigation of my issues; my bloodwork was negative, my biopsy was negative, my genetics positive for HLA DQ8, and my dietary response overwhelmingly positive: I feel good gluten free and feel TERRIBLE on gluten, with all sorts of neurological and gastric symptoms plus canker sores and skin rashes.

My GI doctor is great, though; he believes that I DO have celiac disease, because I already have several autoimmune diseases including Hashimoto's which is frequently associated with celiac, plus I have one of the celiac genes. He says that the high doses of prednisone and Imuran I'm taking for my autoimmune hepatitis can cause villi to regenerate and suppress the antibodies which would explain the negative results for the bloodwork and biopsy.

So I suppose I have my diagnosis; I just feel a bit frustrated because I wanted it to be cut and dried, unequivocal, with no room for doubt!

[Fiddle-Faddle]

I'm with ya--I was on prednisone for the "idiopathic rash" (which I'm SURE was DH), before I was finally able to convince (beg, really) someone to order blood work and a skin biopsy, and the only positive was the IgG (which was sky-high). And, yes, I had Hashimoto's, reflux, the beginnings of joint pain, and intestinal symptoms that I barely noticed until they went away on the gluten-free diet.

Very frustrating--do I have celiac? Or not?

In a way, though, it's the best of both worlds for us. The way I see it is, we probably DO have celiac--but this way, it's not on our medical records--and life insurance and health insurance companies have been known (in the US, anyway) to turn down celiacs "because it's a pre-existing health condition."

This way, as far as they know, we're perfectly healthy (assuming we stay gluten-free, which is so totally not a problem for me!).

[mftnchn]

I think many of us go through the exact same struggle because we don't fit in the current diagnosis "box." At least your GI is sharp enough to make the clinical diagnosis. Much much better than many docs out there!!

In my case, I was overseas and didn't have the availablility of either bloodwork or reliable endoscopy. My double DQ2, very strong Enterolab results, other autoimmune conditions, and response to the diet were the basis for my doctor's clinical diagnosis. We're pretty sure it is celiac, but I'm not willing to challenge gluten for months to be able to do further testing. My recovery has been too slow to compromise it.

After awhile, I've become more accepting of the clinical (and maybe less definitive) diagnosis. Hopefully you will too!

[nasalady]

Thanks for the replies; it's good to know that I'm not alone. And mftnchn, I understand...I'm not willing to go back on gluten either. My doctor did offer to do a capsule endoscopy, if I wanted him to, but I would have to eat gluten again for a while, and I just can't do it. I can't let myself feel that sick anymore, now that I know that I don't have to!

So, yes, I'd rather learn to be accepting of a slightly "fuzzy" diagnosis, than undergo more testing.

[ravenwoodglass]

My GI doctor is great, though; he believes that I DO have celiac disease, because I already have several autoimmune diseases including Hashimoto's which is frequently associated with celiac, plus I have one of the celiac genes. He says that the high doses of prednisone and Imuran I'm taking for my autoimmune hepatitis can cause villi to regenerate and suppress the antibodies which would explain the negative results for the bloodwork and biopsy.

So I suppose I have my diagnosis; I just feel a bit frustrated because I wanted it to be cut and dried, unequivocal, with no room for doubt!

You have a very smart GI doctor there. As said there are many of us here who recognize that celaic and NCGS are often different stages of the same disease. The total villi destruction is the end stage of the disease and you are so fortunate that your doctor recognizes that the steroids you are on could have impacted the results of testing. More doctors are starting to realize that recovery from issues when we are gluten free is a diagnostic tool and for some of us it the best tool for diagnosis. If you are getting relief from the diet and are healing then you do have an unequivocal diagnosis. I hope you feel better soon.

[Lisa]

. As said there are many of us here who recognize that celaic and NCGS are often different stages of the same disease.

This theory, implies that gluten sensitivity to Celiac is a progressive disease. Maybe so. But how do you explain sudden onset (triggered) of Celiac Symtoms (autoimune response)?

[Mike M]

Are there any symptoms (besides DH) that are ONLY found in those with celiac disease and are not found in those who are non-celiac gluten-sensitive (NCGS)? For example, are mouth sores/canker sores found only in those with celiac disease?

Just wondering....I suspect that the answer is "no, we wish it were that simple!", but I wanted to ask anyway!

JoAnn

The onset of diarrhea in adults can be gradual or dramatic. The sudden onset of diarrhea would tend to suggest diseases with an acute onset rather than an inherited disease (such as celiac disease). For example, any type of physiological stress or infectious process, such as pregnancy, traveler

[fedora]

good point mike

several people I know felt triggered by stomach bugs,

My next door neighbor is in his late 60s and just got diagnosed. His only real compaint for years was heartburn, then he got shoulder surgery. About 22 months later, he was horribly ill. He believes the surgery triggered him, but then it took a little while to get deathly ill from it.

Also, some of us Knew we needed to avoid wheat, so we did, but still ate other glutens. Then it gets real confusing.

plus, everyone has a unique immune system. Some may go full throttle right away,whereas some my slowly build up to a crescendo.

[Lisa]

Granted, everyone is different. But when does a gluten sensitivity become an autoimmune response?

Or do the people who are gluten sensitive require a trigger into Celiac Disease?

For example, I was never gluten sensitive. I didn't even know what gluten was until I was diagnosed, when one day, after a period of high stress, my symptoms kicked in.

I assume that I was predisposed, but never sensitive to any foods. Am I misdiagnosed? Where is this spectrum? I'm not trying to be argumentative, I just don't fit the theory.

Again, I acknowledge that there is no standard with regard to Celiac, similarities, but no standard.

[MNBeth]

Granted, everyone is different. But when does a gluten sensitivity become an autoimmune response?

Or do the people who are gluten sensitive require a trigger into Celiac Disease?

Forgive me if I'm missing something obvious, but you seem to suggest that gluten sensitivity is not an autoimmune response - only celiac is. Are you saying that an autoimmune response always results in villi damage, and is thus diagnosable by the "gold standard" biopsy? I have always understood gluten sensitivity to be an autoimmune response - just one that does not necessarily attack the villi primarily.

But I'm perfectly ready to admit that I am far from an expert in this area.

[Fiddle-Faddle]

And we already know that symptoms can be silent, as many DH sufferers who are otherwise asymptomatic DO have damaged villi, while others have none, and still others have severe intestinal symptoms in addition to DH.

I think the problem lies in attempting to define and diagnose CELIAC so narrowly, when it seems to be more and more apparent that celiac encompasses many different forms.

[Lisa]

I think the problem lies in attempting to diagnose CELIAC so narrowly,

I agree that the diagnostic envelope for Celiac Disease is too narrow.

[Lisa]

Forgive me if I'm missing something obvious, but you seem to suggest that gluten sensitivity is not an autoimmune response - only celiac is. Are you saying that an autoimmune response always results in villi damage, and is thus diagnosable by the "gold standard" biopsy? I have always understood gluten sensitivity to be an autoimmune response - just one that does not necessarily attack the villi primarily.

But I'm perfectly ready to admit that I am far from an expert in this area.

Open Original Shared Link

In general terms, an autoimmune response is when your body attacks itself.

An autoimmune response in your small intestines, causing your body to attack itself, is triggered by the protein found in gluten is considered Celiac. It is one of the few autoimmune diseases that can be corrected by removal of gluten from the diet.

A gluten sensitivity, may create the same reaction to gluten, but does not initiate the autoimmune response. A gluten sensitivity can also be corrected by removal of gluten from the diet.

A gluten allergy, gluten sensitivity/intollerance and Celiac Disease are different, (ducking my head) according to my understanding.

[ShayFL]

Our bodies have a "tipping point". Just because you dont "feel" or "see" an autoimmune response does not mean it is not happening.

[Mother of Jibril]

Our bodies have a "tipping point". Just because you dont "feel" or "see" an autoimmune response does not mean it is not happening.

I agree with this 100%. Plus... isn't the range for ttG set pretty high so only a positive result corresponds with obvious villi damage?

Also... the realm of autoimmune disorders is such a new area of medicine. I wouldn't be surprised if there are LOTS of antigens just waiting to be discovered.

[Fiddle-Faddle]

MommaG, by the definition you've quoted, many people don't fit in either category, because they are not biopsy-diagnosed as celiac, yet they have autoimmune diseases directly caused by gluten ingestion (those diseases either improve drastically or completely disappear on a gluten-free diet). So they fit the mold for celiac in every conceivable way except for one--the damaged villi.

So where do you think they fit in?

[nasalady]

This theory, implies that gluten sensitivity to Celiac is a progressive disease. Maybe so. But how do you explain sudden onset (triggered) of Celiac Symtoms (autoimune response)?

Hi Lisa,

Forgive me for butting in here, but I always thought that celiac disease was a progressive disease; at least, the damage from untreated celiac disease will become worse and worse over time, isn't that so? Doesn't that fit the definition of progressive disease? Or am I missing something here?

At the age of two, my granddaughter Carly wasn't growing well (she was below the first percentile on the growth charts), and then she began to lose weight. She had diarrhea and stomach problems. They suspected celiac but her bloodwork and initial biopsy were both negative.

A year later, Carly was starting to look like those children in Ethiopia, her ribs and collarbone plainly visible, with the protruding stomach of starvation, even though the poor little thing was eating like a horse! Her gastroenterologist decided to repeat the biopsy.....and lo and behold, damaged villi! My daughter Robin started Carly and her entire family on the gluten free diet immediately. Robin has Hashimoto's thyroiditis and may well have celiac disease herself, but we'll never know, because she's gluten free and will never go back to eating gluten.

Of course, now that she's gluten free, Carly is healing well; she's gaining weight and is getting close to normal range in both height and weight on the growth charts.

But if they had put her on the gluten free diet back when her bloodwork and biopsy were both negative, she might have been diagnosed as being gluten intolerant....after all, she didn't fit the celiac disease profile at that point in time!

Therefore it seems to me that it's entirely possible that someone could be diagnosed as NCGI in the early stages of celiac disease, right? Because there would be no way to distinguish between gluten intolerance and early celiac disease. As to "sudden onset" of symptoms, isn't it possible that the disease could have been lurking silently and asymptomatically for years before the damage was severe enough for the symptoms to finally make their dramatic appearance?

Perhaps (just perhaps), there is no such thing as "gluten intolerance"....it's merely an early phase of celiac disease. I'm just thinking out loud here, but it seems as though I'm not the only one who has speculated along those lines.

Take care,

JoAnn

[Lisa]

because they are not biopsy-diagnosed as celiac, yet they have autoimmune diseases directly caused by gluten ingestion

If not through biopsy or blood work, how would you know that you have an autoimmune disease?

There may be spectrum for gluten sensitivity/intolerance and there may be a spectrum for Celiac Disease, but I believe the two are separate, sharing symtoms and controlled gluten removal.

Once again, this is a "cows come home" topic. Perhaps research down the road may provide us with the answers.

[MNBeth]

A gluten sensitivity, may create the same reaction to gluten, but does not initiate the autoimmune response. A gluten sensitivity can also be corrected by removal of gluten from the diet.

This seems contradictory to me. Perhaps it's semantics, but I can't understand in what respect the reaction is "the same" but in one case it's autoimmune and in another it's not. If one reaction is autoimmune and one is not, I would not call them "the same." Nor am I persuaded that the autoimmune system always or only attacks the villi in the intestine. I may just be a little out of my depth, here, but I'm not seeing the evidence that one reaction is autoimmune and the other is not.

[Lisa]

This seems contradictory to me. Perhaps it's semantics, but I can't understand in what respect the reaction is "the same" but in one case it's autoimmune and in another it's not. If one reaction is autoimmune and one is not, I would not call them "the same." Nor am I persuaded that the autoimmune system always or only attacks the villi in the intestine. I may just be a little out of my depth, here, but I'm not seeing the evidence that one reaction is autoimmune and the other is not.

Try substituting "reaction" with "symptoms" and see if it makes sense.

[Lisa]

Hi Lisa,

Forgive me for butting in here, but I always thought that celiac disease was a progressive disease; at least, the damage from untreated celiac disease will become worse and worse over time, isn't that so? Doesn't that fit the definition of progressive disease? Or am I missing something here?

At the age of two, my granddaughter Carly wasn't growing well (she was below the first percentile on the growth charts), and then she began to lose weight. She had diarrhea and stomach problems. They suspected celiac but her blood work and initial biopsy were both negative.

A year later, Carly was starting to look like those children in Ethiopia, her ribs and collarbone plainly visible, with the protruding stomach of starvation, even though the poor little thing was eating like a horse! Her gastroenterologist decided to repeat the biopsy.....and lo and behold, damaged villi! My daughter Robin started Carly and her entire family on the gluten free diet immediately. Robin has Hashimoto's thyroiditis and may well have celiac disease herself, but we'll never know, because she's gluten free and will never go back to eating gluten.

Of course, now that she's gluten free, Carly is healing well; she's gaining weight and is getting close to normal range in both height and weight on the growth charts.

But if they had put her on the gluten free diet back when her blood work and biopsy were both negative, she might have been diagnosed as being gluten intolerant....after all, she didn't fit the celiac disease profile at that point in time!

Therefore it seems to me that it's entirely possible that someone could be diagnosed as NCGI in the early stages of celiac disease, right? Because there would be no way to distinguish between gluten intolerance and early celiac disease. As to "sudden onset" of symptoms, isn't it possible that the disease could have been lurking silently and asymptomatically for years before the damage was severe enough for the symptoms to finally make their dramatic appearance?

Perhaps (just perhaps), there is no such thing as "gluten intolerance"....it's merely an early phase of celiac disease. I'm just thinking out loud here, but it seems as though I'm not the only one who has speculated along those lines.

Take care,

JoAnn

JoAnn,

Certainly Celiac can progress if unchecked or undiagnosed, without a doubt.

Diagnosing Celiac Disease if far accurate, especially among children. I have also said that I believe the diagnostic envelope if far too narrow. Research need to step up here!

In a perfect world, when all testing is l00% accurate, there has to be a jump/trigger when gluten sensitivity become autoimmune. What caused that jump, I don't know. But when it does, it becomes Celiac Disease.

Just my thoughts...

[mhb]

The total villi destruction is the end stage of the disease ...

I wonder if it's all that linear. Do we have reason to think villi destruction is "end stage" as opposed to just one manifestation, more like a spoke on a wheel with gluten at the center?

[nasalady]

I wonder if it's all that linear. Do we have reason to think villi destruction is "end stage" as opposed to just one manifestation, more like a spoke on a wheel with gluten at the center?

This is a good point...in view of those with DH who have no visible villi damage, or those (like me) who have neurological symptoms, with or without the traditional gastric issues. It does seem like celiac disease wears many different faces!