Gluten Intolerant Vs. Celiac

[Presto]

On another message board where I offer support for others being diagnosed as Celiac or gluten intolerant, there is a dietician who basically follows around to see where I post about gluten, and makes sure that everyone is aware that I am not a REAL Celiac.

I only call myself gluten intolerant because I was unable to go back to eating enough of the stuff to get a diagnosis. My antibodies were in the middle of acceptable after several months off of gluten, and I saw no point in an endoscopy at that point if the blood test wasn't picking up a reaction.

Maybe I was wrong, and should have gotten an endoscopy.

Anyway, this dietician's latest announcement on the heels of my commiseration and advice for where to get informed to a new diagnosee(to go here BTW), was that:

"gluten intollerance and celiac are not cocmpletely the same (celiac is a specific response to gluten), but both are treated the same way and its worth it to do whats best for you-"

Now, while I like that she adds that the treatment is the same (and quit eating it if it hurt ya), I think either I am not clear on the differentiation here or if she has her own idea of what the two classifications mean.

How does a gluten intolerant person NOT have the "Celiac specific response"?

I thought the mechanism was pretty much the same, but that due to different gene expression damage may or may not show up in the intestine, or antibodies may not show as high or at all on a blood test?

Who is misinformed? Me or the dietician? (BTW she lives with severe dietary intolerances, calls it IBS and is selling a line of clothes with expandable adjustable waistlines for dealing with bloat.)

[Lisa]

Here is some information that might be helpful:

Open Original Shared Link

Frequently, on the forums the terms gluten sensitivity, gluten intolerance and Celiac Disease are interchanged, although they are different disorders. This, I believe creates great confusion.

The testing currently available is far from accurate and as you mentioned, to achieve the optimum accuracy in testing you must remain on a full gluten diet. The diagnostic envelop may be far too narrow at this time.

The possession of the genes only give you an indication that you MAY develop Celiac or other autoimmune issues. You may not as well. Thirty percent of the general population hold those same genes. There is no specific "Celiac Gene" identified at this time.

Many people here are self diagnosed and feel perfectly happy with their choice to maintain a gluten free lifestyle. Others, feel the need for an official diagnosis.

I guess the bottom line is, if gluten bothers you, don't eat it. What difference does a name make.

[Guest chetalrim]

The way I read the statement the dietician made about coeliac is this. Coeliac Disease is a condition where gluten actually damages the villi of the small intestine, increasing significantly the risks of several types of cancers and so on. Gluten intolerance is the body negatively demonstrating a reaction to gluten. The symptoms can be very similar, if not the same in some people, so it makes sense to avoid gluten altogether in both cases in order to feel better. But gluten intolerance doesn't cause any actual physical damage to the body, just makes you feel like crap with all the symptoms.

At least, that's how my doctor explained it to me!

[momxyz]

here's my take on the difference:

the dietician is going by what the medical community currently accepts as the standard definition of celiac disease: it's hallmark is villous atrophy. no atropy, negative biopsy - you don't have celiac's disease.

Celiac disease is one form of gluten intolerance, but according to many, it only represents the tip of the iceberg. Relatively few people are diagnosed with celiac's disease; many more are affected by non- celiac gluten intolerance. Is this because the testing in some ways is relatively insensitive? (ie significant number of false negative results). I believe this is part of the answer. The other part of the answer lays in the growing evidence that non-celiac gluten intolerance is a separate disease entity and a very real problem.

No disrespect, chetalrim, I disagree with your doctor's explanation. Non-celiac gluten intolerance can inflict real damage to your body.

But don't take my word for it, here are some references that I found really useful.

Open Original Shared Link for Non-Celiac Gluten Intolerance

this one is a power point. It gets technical but the beginning slides should be useful.

this one is a You tube and it is great. Conventional doctors, who specialize in Celiac, but recognize non Celiac gluten intolerance as a real entity. Its a whole conference and it is long, but at least watch the first presentaiton.

[minniejack]

  momxyz said:

here's my take on the difference:

the dietician is going by what the medical community currently accepts as the standard definition of celiac disease: it's hallmark is villous atrophy. no atropy, negative biopsy - you don't have celiac's disease.

Celiac disease is one form of gluten intolerance, but according to many, it only represents the tip of the iceberg. Relatively few people are diagnosed with celiac's disease; many more are affected by non- celiac gluten intolerance. Is this because the testing in some ways is relatively insensitive? (ie significant number of false negative results). I believe this is part of the answer. The other part of the answer lays in the growing evidence that non-celiac gluten intolerance is a separate disease entity and a very real problem.

No disrespect, chetalrim, I disagree with your doctor's explanation. Non-celiac gluten intolerance can inflict real damage to your body.

But don't take my word for it, here are some references that I found really useful.

Open Original Shared Link for Non-Celiac Gluten Intolerance

this one is a power point. It gets technical but the beginning slides should be useful.

this one is a You tube and it is great. Conventional doctors, who specialize in Celiac, but recognize non Celiac gluten intolerance as a real entity. Its a whole conference and it is long, but at least watch the first presentaiton.

The highlighted did not work for me. Do you have another?

[darlindeb25]

  Quote

The way I read the statement the dietician made about coeliac is this. Coeliac Disease is a condition where gluten actually damages the villi of the small intestine, increasing significantly the risks of several types of cancers and so on. Gluten intolerance is the body negatively demonstrating a reaction to gluten. The symptoms can be very similar, if not the same in some people, so it makes sense to avoid gluten altogether in both cases in order to feel better. But gluten intolerance doesn't cause any actual physical damage to the body, just makes you feel like crap with all the symptoms.

Your doctor is wrong, very wrong. As momyxyz says, non celiac gluten intolerance is as damaging, well, actually more damaging to the body than celiac is. Celiac is just one autoimmune condition that gluten intolerance can cause, but there are many other autoimmune diseases caused by gluten intolerance. Gluten intolerance causes autoimmune diseases such as Sjogrens, Hypothyroidism, Neuropathies, B12 difficiencies, ADHD and ADD, MS, just to start. Non-celiac gluten intolerance can inflict real damage to your body, not just the villi like celiac does. Celiac is just the tip of the iceberg, gluten intolerance is the iceberg.

  Quote

How does a gluten intolerant person NOT have the "Celiac specific response"?

A gluten intolerant person doesn't have to have celiac, but, a celiac has to have gluten intolerance. It's similiar to "which came first, the chicken or the egg?" In this instance, gluten intolerance definitely came first, celiac is just one reaction to gluten intolerance.

[Ahorsesoul]

  Presto said:

Who is misinformed? Me or the dietician? (BTW she lives with severe dietary intolerances, calls it IBS and is selling a line of clothes with expandable adjustable waistlines for dealing with bloat.)

Dieticians can also need some education. It really doesn't matter what the label says. If your body can't digest the gluten your gluten free.

I had doctors argue over if I had celiac or sprue.

[Lisa]

A gluten intolerance can effect other areas of the body. Celiac Disease manifests it's self in the small intestines, where the autoimmune response takes place.

Both disorder may be associated with other autominune and non-autoimmune conditions if left unchecked.

[Tim-n-VA]

I think the dietician is correct. Gluten-intolerance is not a consistent term on this message board. While the diagnosis is problematic, Celiac is a well defined auto-immune response to gluten. That is, well defined in terms of which body sub-system is doing what. And, as the dietician said, the treatment is the same.

To the extent the dietician is discounting your knowledge and option because you aren't a "real Celiac", that's just silly.

[Presto]

  darlindeb25 said:

Your doctor is wrong, very wrong. As momyxyz says, non celiac gluten intolerance is as damaging, well, actually more damaging to the body than celiac is. Celiac is just one autoimmune condition that gluten intolerance can cause, but there are many other autoimmune diseases caused by gluten intolerance. Gluten intolerance causes autoimmune diseases such as Sjogrens, Hypothyroidism, Neuropathies, B12 difficiencies, ADHD and ADD, MS, just to start. Non-celiac gluten intolerance can inflict real damage to your body, not just the villi like celiac does. Celiac is just the tip of the iceberg, gluten intolerance is the iceberg.

A gluten intolerant person doesn't have to have celiac, but, a celiac has to have gluten intolerance. It's similiar to "which came first, the chicken or the egg?" In this instance, gluten intolerance definitely came first, celiac is just one reaction to gluten intolerance.

Ah, thank you! This answer is beautiful, and kind of summarizes what I suspect. I like looking at it as Celiac is one reaction to gluten intolerance.

And yes, I hate it that she is trying to discount my opinion, just because she's getting a "formal education" and all I have is personal experience and the web.

We interacted badly on a completely unrelated topic, and I think this is just her way of expressing a grudge, her annoyance with me, etc. Sometimes I think she's misinforming people, but I guess she feels the same about me.

[darlindeb25]

  Quote

And yes, I hate it that she is trying to discount my opinion, just because she's getting a "formal education" and all I have is personal experience and the web.

Oh yeah, this is true of doctors too. Nothing is better than personal experience, and often times they forget that we are not all text book examples. Doctors are getting better at thinking about gluten as the problem, but they still have a long ways to go. They need to listen to the patient, listen to what they are saying. Same thing for the dieticians...some of them do not listen either. I have many, many intolerances, although, now I am beginning to think that some of my intolerances are caused by cross contamination of products...any ways, a doctor listened to me explain what I can't eat, and then told me I had to set up appts with her dietician, so she could teach me to eat properly. She wasn't listening to me at all, just hearing what I do not eat, but not why.

Much of gluten intolerance is self learning. Trial and error, and you will figure it out.

[momxyz]

  minniejack said:

The highlighted did not work for me. Do you have another?

the link had worked before... hope they haven't taken the article down! I will try to find it again because it was very useful to me.

[momxyz]

ok, found a new link for it! Please let me know if it works this time:

Open Original Shared Link

[darlindeb25]

Its a great link too. He makes it all so much easier to understand. I wish he was here on the east coast.

[lcarter]

I just don't see this kind of differentiation in the literature coming out of Europe between Celiac and GI. European doctors and researchers have been on the Coeliac band wagon a lot longer than it has even been on the radar in the US. Personally, I am not so sure that there is really that much of a difference between all the symptoms that make up what European's refer to as the Gluten Intolerance Syndrome. And, it really seems to be a syndrome, not a collection of independent diseases.

These endoscopy tests are not all that reliable folks - although I know you would like them to be - it's only as good as who does it [did they take sufficient samples and were they lucky enough to find the spotty evidence ?] and who reads it [how experienced and thorough is the lab who read your slides?]. They don't have all the answers yet. So, it seems like you are putting a lot of faith in someone and something that is far from 100%. If you are gluten intolerant, then you are Gluten Intolerant with or without lab varified villi blunting. Remember that nothing is absolute in medicine. That's why doctors PRACTICE medicine.

[Ivy]

  momxyz said:

ok, found a new link for it! Please let me know if it works this time:

Open Original Shared Link

Just wanted to thank you for posting the link. It was a real aha moment for me and helped me figure out how to approach my idiot doctor.

Ivy