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Celiac Vs Gluten Sensitivity. Is There A Difference?


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#1 mom22kids

 
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Posted 18 April 2007 - 09:49 AM

My daughter had an endoscopy and a colonoscopy 2 weeks ago. The lab results came back negative for Celiac, but she has Gastritis. I heard back from the doctor today because he wanted to look at the slides again. He said she has a gluten sensitivity and we need to eliminate large amounts of gluten from her diet. But after looking up Gluten Sensitivity online everything comes back associated with Celiac. Is there a difference? Is there a website that talks about the difference? I'm more confused now than before. I'm having them mail me her entire chart so I can have an independent review of it.
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#2 CarlaB

 
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Posted 18 April 2007 - 10:18 AM

If she had any damage to her intestinal villi visible on the slides the doctor was looking at she has celiac disease. Any damage is positive for celiac.

There is really no definition to gluten intolerance. There are many forms of gluten intolerance (celiac being one of them). The thing is, celiac is the only form that has been researched at all.

Some people with gluten intolerance may have just caught true celiac before there was damage done to the intestine.

Some might have neurological symptoms, but no digestive symptoms or damage.

Some, like me, have another disease altogether that's making them sensitive to gluten.

The solution to all is to be 100% gluten-free. Again, if he saw damage on the slide, it's celiac, not "just" gluten intolerance. I suspect he's calling it that because the damage isn't bad??? I'd clarify with him -- Did you see any damage at all? If so, you know she has celiac, no point arguing with doctor. If no, ask why he thinks she's gluten intolerant.

Was her blood work positive? Could he be saying she's gluten intolerant because of the blood work?

I would clarify this with the doctor.
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gluten-free 12/05

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#3 mom22kids

 
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Posted 18 April 2007 - 10:55 AM

Her IgG was elevated, her IgA, and the Ttg were not elevated. The lab results said negative for Celiac. I will have to clarify more. Any questions that I should be asking? What about H. Pylori? Could this result in a gluten sensitivity? There is a possibility that this could be the case, as Gastritis in children is usually caused by H. Pylori. I've asked for all the results to be sent to me so I can review them as well.
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#4 CarlaB

 
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Posted 18 April 2007 - 11:01 AM

I would try to find out why her doctor said she was gluten intolerant. What made him decide she was based on looking at her slides again?

Some people are genuinly gluten intolerant, and your daughter may be, but if she's not celiac, then the best way to determine it is by dietary response. I am just curious as to why your doctor came to the gluten intolerance conclusion.

I don't know about the other question, but there are others here who have dealt with that and hopefully will answer.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#5 Nantzie

 
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Posted 18 April 2007 - 01:28 PM

I've also been diagnosed as gluten intolerant, but I respond to the diet, and especially slip-ups, as if I have celiac. I really don't believe there is much difference at all. I think the villous atrophy is one of many things that can happen to someone with gluten issues.

I made the decision not to go for an official diagnosis because some people have run into problems getting insurance when they have a diagnosis. We also have chosen not to go for an official diagnosis with our kids because we don't want them to be limited in career options in the future (military, etc.). Who knows, maybe there will be some official or even unofficial treatment for celiac in the future and they may be saddled with a diagnosis but have no active disease. Some kids even go through a remission of symptoms in adolescence and they still don't know what exactly that means - if they're just not feeling symptoms and still being damaged, or if it's a true remission and the disease is no longer active.

I'm perfectly happy with being officially "gluten intolerant". On this board, and I think most others, people aren't treated any differently if they are gluten intolerant or if they have an official celiac diagnosis. We all seem to be in the same boat as far as day to day living and reactions go.

I thought at first that maybe I wouldn't have to be as careful because I'm just gluten intolerant, but it turns out I'm actually extremely sensitive to even the smallest amount of second-hand gluten. So degree of intestinal damage doesn't necessarily have anything to do with the degree of sensitivity.

Personally, I identify myself as celiac on the board and in real life unless I'm talking to someone who has celiac or gluten intolerance specifically about the difference between celiac and gluten intolerance.

Other than that, I have celiac. That's my story and I'm sticking to it.

:D

Nancy
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#6 mom22kids

 
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Posted 18 April 2007 - 02:02 PM

Would anyone recommend to do a test from Enterolab? Would it be any better or more accurate than the blood work? What about the lab results from the bioposy? Will this tell me how gluten intolerant she is if I do the stool test from Enterolab? I don't want to waste the money if it won't help.
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#7 CarlaB

 
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Posted 18 April 2007 - 02:43 PM

Personally, and I'm someone who did use Enterolab, I think dietary response in the best indicator. After a few months gluten-free, you will be able to see if the symptoms improve, and if necessary, challenge it by eating gluten again to see what happens.

If the biopsy shows ANYTHING, then it's celiac, NOT gluten intolerance. There's no such thing as being a little bit celiac, just like there's no such thing as a little bit pregnant. You either have villi damage or you don't. If her biopsy shows damage, do not challenge by eating gluten.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#8 confused

 
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    Just cause i cant have gluten doesnt mean im dying

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Posted 19 April 2007 - 05:19 AM

Her IgG was elevated, her IgA, and the Ttg were not elevated. The lab results said negative for Celiac. I will have to clarify more. Any questions that I should be asking? What about H. Pylori? Could this result in a gluten sensitivity? There is a possibility that this could be the case, as Gastritis in children is usually caused by H. Pylori. I've asked for all the results to be sent to me so I can review them as well.



I am curiuos why the dr said she is only gluten senisitive also. My son also just had the high IgG levels. We decided not to do the scopes because we had already taken him off gluten and tired to put him back and after a few hours we knew he had a problem with gluten. We are now waiitng for his test results from enterolab to see what they show.

He was also diagnosed as gastristis a few months back.

paula
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gluten, casein and soy free
on low carb/low sugar diet

#9 sfm

 
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Posted 19 April 2007 - 06:55 AM

I am curiuos why the dr said she is only gluten senisitive also. My son also just had the high IgG levels. We decided not to do the scopes because we had already taken him off gluten and tired to put him back and after a few hours we knew he had a problem with gluten. We are now waiitng for his test results from enterolab to see what they show.

He was also diagnosed as gastristis a few months back.

paula



The whole celiac vs. gluten intolerance clarification seems to be such a gray area. My bloodwork came back negative for celiac, but my doctor (to his credit) said that did not mean I am not gluten sensitive. There are certain levels of the antibodies, and they are subject to a doctor reading them.

The biopsy is supposed to be the 'gold standard' and my understanding is that if there is damage to the villi, that means celiac. Maybe there was damage, but not to the extent that the doctor expected with "true" celiac? Good for him for taking a second look and determining there is a gluten sensitivity. Not so good that he feels she should only get rid of large amounts of gluten. With either gluten intolerance or celiac, the answer is to eliminate it completely, or the intestinal damage will continue.

I never had a biopsy, but I did follow up with Enterolab testing, which came back with elevated Antigliadin IgA and Trangsglutaminase IgA, as well as a double copy of the gene for gluten intolerance. The enterolab tests are more sensitive, but can't diagnore celiac, they can only diagnose active dietary gluten sensitivity, and test the genes for celiac and gluten sensitivity.

To make a long story somewhat shorter, it doesn't really matter if she has celiac or gluten intolerance, the treatment, symptoms, and potential for long term damage are identical. It's almost like they are two types of the same thing.

Sheryll
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#10 JennyC

 
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Posted 19 April 2007 - 07:17 AM

Celiac disease is an autoimmune disease. If the tests results are accurate, then a person with Celiac should have elevated tTG levels and damage to their intestinal villi. High tTG levels are indicative of autoimmune disorders. Gluten intolerance should not cause intestinal damage or elevated tTG levels. Gluten intolerance is similar in nature to other intolerances, such as lactose intolerance. An intolerant person may not be able to digest the gluten protein and this osmotically active protein draws water into the intestine. This results in diarrhea, cramps, bloating, and possibly dehydration. As in other intolerances, there can be levels of severity.

They are different diseases, but many of the symptoms are the same. And the diet is the same.

Hope this helps.
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Jenny

Son 6 yrs old, Positive blood work, Outstanding dietary response, no biopsy.
Household mostly gluten free since 3/07

Me: HLA-DQ 02 & 0302 (DQ 08), which I ran & analyzed myself!Currently gluten lite, negative tTG, asymptomatic

#11 gfp

 
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Posted 19 April 2007 - 07:18 AM

Medical opinion varies....
Your daughter would be classed as celiac in Italy...
Negative IgA is meaninglless without TgA... and meaningless in young children anyway...
Negative biopsy is pretty meaningless all the time...

Non of these being negative rules out celiac but it only really depends on the defintion you use for celiac.
Its just semantics at the moment...
Noone understands WHY some people are IgA +ve and IgG negative or visa versa...

On top of this I think an increasing number of us look as gluten-intolerance as celiac disease that is still not fully developed.
The point is you are either celiac or not... retrospectively many of us can look back at symptoms developing and perhaps then note changes but the point is we always were celiac.... to some extent or another...
The amount of damage to your body doesn't seem to make any difference... perhaps when we are younger or fitter the body repairs villi faster and so biopsies tend to be negative but that doesn';t mean damage isn't being done... we just are not observing it..

As everyone else has said.. the treatment is exactly the same...

Its worth repeating Nantzie

I thought at first that maybe I wouldn't have to be as careful because I'm just gluten intolerant, but it turns out I'm actually extremely sensitive to even the smallest amount of second-hand gluten. So degree of intestinal damage doesn't necessarily have anything to do with the degree of sensitivity.


and what happygirl wrote on a different thread
http://www.glutenfre...s...st&p=292916
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#12 mom22kids

 
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Posted 19 April 2007 - 08:46 AM

Let me tell you more what the doctor said. After the endoscopy he brought me pictures from the procedure. Showed me where it "looked a little like Celiac". Those were his exact words. The biopsy came back negative for Celiac. But the doctor wasn't convinced. He wanted to relook at the slides from endoscopy. He said he was not Celiac. But to me it sounds like there was damage and that is why he wanted to re look at the slides. The doctor's office is sending me her full chart. So, before I call back with any questions (keeping a log of all questions), I'm going to review the chart. I might even take it to another doctor to review.

From what I gather, nothing else can cause damage to the intestines like Celiac. So any small damage would more than likely be Celiac.

She's doesn't have typical symptoms of Celiac other than the rash, behavior issues, and canker sores in the mouth.

I also want to say, that I feel I get no help from the staff. It's like if I ask a question, I'm putting them out. So inse, I come to the internet to clarify my questions.
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#13 gfp

 
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Posted 19 April 2007 - 09:20 AM

Your first question already gives the the answer

He said she has a gluten sensitivity and we need to eliminate large amounts of gluten from her diet. But after looking up Gluten Sensitivity online everything comes back associated with Celiac.


Your MD is fixating on one test....
You can still be be celiac and have NO damage or nothing that "looks like celiac"

In the end its just semantics.... defintion from one book or a different one... it looks like the book he has says one thing!

I also want to say, that I feel I get no help from the staff. It's like if I ask a question, I'm putting them out. So inse, I come to the internet to clarify my questions.


Hardly surprising if they know near nothing about celiac..... I have yet to have a MD that did... although others are lucky...
Some MD's will read what you take them and other's won't.... I can link you to hundreds of medical papers but non of that will make a difference if your MD won't read them....

Part of out frustration seems to be we are not happ;y with an MD that say "uggh I dunno, don't know much about celiac disease " and we expect MD's to know thousands of different diseases off the top of their head.... they don't, they're just people like us.

If you are the 1st patient that doctor has had with celiac disease then chances are your MD won't know diddlysquat apart from 10 minutes in passing at med school.
As more people are diagnosed this is slowly changing....
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#14 chocolatelover

 
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Posted 19 April 2007 - 10:10 AM

I was just diagnosed celiac even with a negative biopsy and negative bloodwork. My other risk factors were enough that my doctor truly believes that I have active celiac, not just gluten sensitivity. I think that the mainstream medical community has been very slow to accept that celiac is really just the tip of the gluten issue. Celiac is like the stage 4 of gluten sensitivity. If you ignore gluten sensitivity, I believe that it will eventually turn into celiac, just like cancer, if not caught early enough, will progress from a stage one onward.

Even before my celiac diagnosis, I took myself off gluten because of my Enterolab results, which showed significant gluten sensitivity (not the highest I've ever seen on this board, but high enough). I have responded beautifully to the gluten free diet, and many other symptoms that I had no idea were related have now disappeared as well. It helped me figure out that even though the blood tests were negative, I could still have a problem with gluten.

I have learned more from the internet and this forum than I could possibly have from my old GI--they knew nothing and are probably too pig headed to ever want to learn more about it.

Here is a website that has great information on celiac and gluten sensitivity: www.thefooddoc.com
The dr. is Dr. Lewey, who has done a great deal of research on both and has come up with some conclusions that make a lot of sense.

The bottom line is that, as many have already said, the treatment is the same, and the end result is the same. I have noticed significant differences in my kids since taking them off gluten, and all of their bloodwork was negative. I also feel better knowing that I am possibly preventing them from having major issues in the future--medically, psychologically, neurologically...
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Dx'd with lymphocytic colitis 1/07
Dx'd by Enterolab 3/07--+IgA, +Ttg, DQ2 and DQ8
Dx'd celiac by Dr. Lewey 4/07--without +blood or biopsy
gluten-free 3/7/07

#15 CMCM

 
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Posted 19 April 2007 - 09:14 PM

So much is not known or understood about celiac disease, especially in this country. And even LESS is known about gluten sensitivity, or about gluten sensitivity compared to celiac disease. There are actually a few celiac specialists who suggest eliminating the term "celiac disease" and call the entire spectrum "gluten sensitivity, which would include celiac disease as a subset of this larger gluten sensitivity spectrum.

However, think about this: if you put gluten into a petri dish with human tissue, the gluten attacks and destroys the tissue. Do you want this to happen inside your body, to your organs, to your tissues? Many doctors are now concluding that it probably would be best if people did not eat gluten as their digestive systems are not equipped to handle it and break it down without reactions. Add to this the fact that the gluten that exists today in all the products we eat is far more intense than the gluten people ate 100, 200 years ago. Wheat is developed to have higher and higher gluten content, and therefore, the amount of gluten people eat is far higher than it was in the past.

It is a known fact that people with only gluten sensitivity genes can be just as sick as a person with celiac genes. The bottom line is that particuarly if you are sick with symptoms, and if a gluten free diet eliminates or lessens those symptoms, then it is clear you should no longer eat gluten.
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CAROLE

-------------
Enterolab 1/2006
IgA & tTg Positive
DQ2-0201 (celiac) and DQ1-0604 (gluten)
Casein IgA positive
Mom has 2 celiac genes
Both kids have a celiac gene.
Lots of celiac disease in my family, both sides.




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