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Eric_C

Celiac's Vs Gluten Intolerance Diff?

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"noninvasive screening test for early or latent celiac sprue" (what others and I would simply call gluten sensitivity)

(sorry, no box quote)

.........

As listed below from the NIH Conference, "Latent Celiac Sprue" and "Gluten Sensitivity" are two different animals.

Types of Celiac Disease

Celiac disease has now been categorized into 4 main classes according to the NIH consensus conference.

1. Classical celiac disease includes those symptoms commonly associated with the disease in the past, diarrhea, bloating, abdominal pain, and weight loss.

2. Celiac disease with atypical symptoms includes those extra intestinal symptoms of osteoporosis, neurological involvement, and little or no abdominal symptoms.

3. Silent celiac disease includes those individuals who are asymptomatic yet have both positive serology and biopsy.

4. Latent celiac disease includes positive serology and negative biopsy, but may later present with positive symptoms or intestinal changes.

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Ive been wondering about this. I was diagnosed as gluten intolerant on one test, but on the other 5 (biopsy, genetic dq2, dq8, blood) came back negative. I'm doing the diet now to see if it works.

I also have developed some thyroid disorder over the 3 years due to this, and I think it is all related. I think celiac is a hard thing to catch, because if you try catch it too early, every test will just come back normal. It's weird, it's like you have to poison yourself for months before you can actually test positive for it.

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And finally, celiac disease involves the activation of a particular type of white blood cell, the T lymphocyte, as well as other parts of the immune system. Because of this, patients with celiac disease are at increased risk to develop GI cancers, in particular intestinal lymphomas.

This is very interesting. A month ago I got a neg celiac blood test (couldn't get the whole panel - just transglutaminase). My doctor tested for a bunch of other stuff too. The one thing that was a little high was my white blood cell count. Two weeks later I had another test and it was still high, so today I got WBC tested once again. I don't know if it's T lymphocytes or not. I'm scared. My gastro appointment isn't until July 23rd, and that will likely be just a preliminary consultation. So my plan is to go off gluten for 3 months, then back on.

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4. Latent celiac disease includes positive serology and negative biopsy, but may later present with positive symptoms or intestinal changes.

But gluten sensitivity is what everybody here has been calling positive serology and negative biopsy! I'm not saying they're right--quite the opposite, you know I've been fighting that one for a long time--but that's been the whole source of heated debate right there in a nutshell, the fact that if you don't have a positive biopsy, nobody considers that you might have latent celiac, they say you are either "only" gluten intolerant or else perfectly healthy!!!! And then what--you are supposed to continue eating gluten until you've done enough damage to be seen in a biopsy???

How exactly did the NIH conference define "gluten sensitivity," I'd like to know???

So we are back to the idea that even with a negative biopsy, one should assume it's celiac and be gluten-free if one has positive bloodwork. Period.

I am SO glad you posted this!

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Is there any OTHER support documentations for your statement, other than an article written by Dr. Fine? (That's another whole topic, as you know) You may be right, but I would like to see some support studies.

I'll try to find the following studies:

As mentioned at the outset, not all gluten sensitive individuals develop villous atrophy. Evidence for this has been around for a long time. In 1980, a medical publication titled

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Good heavens, there are MANY studies out there, much more recent than what Dr. Fine quoted.

Here is one, fromFinland, published in Gastroenterology November 24, 2008:

BACKGROUND & AIMS: The diagnostic criteria for celiac disease require small-bowel mucosal villous atrophy with crypt hyperplasia (Marsh III). However, mucosal damage develops gradually and patients may evince clinical symptoms before histologic changes appear. Endomysial antibodies are specific in predicting forthcoming villous atrophy. We hypothesized that patients with mild enteropathy but positive endomysial antibodies benefit from a gluten-free diet (GFD) similarly to patients with more severe enteropathy. METHODS: Small-bowel endoscopy together with clinical evaluations was performed in altogether 70 consecutive adults with positive endomysial antibodies. Of these, 23 had only mild enteropathy (Marsh I-II) and they were randomized either to continue on a gluten-containing diet or start a GFD. After 1 year, clinical, serologic, and histologic evaluations were repeated. A total of 47 participants had small-bowel mucosal lesions compatible with celiac disease (Marsh III), and these served as disease controls. RESULTS: In the gluten-containing diet group (Marsh I-II) the small-bowel mucosal villous architecture deteriorated in all participants, and the symptoms and abnormal antibody titers persisted. In contrast, in the GFD group (Marsh I-II) the symptoms were alleviated, antibody titers decreased, and mucosal inflammation diminished equally to celiac controls (Marsh III). When the trial was completed, all participants chose to continue on a life-long GFD. CONCLUSIONS: Patients with endomysial antibodies benefit from a GFD regardless of the degree of enteropathy. The diagnostic criteria for celiac disease need re-evaluation: endomysial antibody positivity without atrophy belongs to the spectrum of genetic gluten intolerance, and warrants dietary treatment.

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She may very well be celiac. The fact that I was negative repeatedly on blood panels but doctors never told me anything other than to be glad I didn't have 'sprue' delayed my diagnosis by oh so many painful years. While I was testing I was developing more than one other autoimmune mediated problem, all of which resolved on the diet once I was finally diagnosed. I am definately a celiac who tests negative on panels, some of us do. This is especially true for children. In countries where they screen they test at around age 4 and again at puberty and whenever symptoms warrent it. There may come a time when testing gets more reliable. There are really good tests, one of which is a challenge using the rectal or oral mucosa, that are easy and quite reliable. From my understanding the doctors here think they pick up too many positives so we don't use that test in the US.

Also if you haven't already make sure you get actual copies of the test. Some doctors will say that a really low positive is a negative. Even if she is only one point into the positive range she should be doing the diet with her history.

You could gene test but it is common to only look for DQ2 or DQ8 but there are 7 other celiac related genes.

Ravenwoodglass and Momma Goose, thank you for your replies regarding my post here!

Raven, I did get a copy of her test which showed, in my opinion, low total IGA which would mess with the results as well as pretty high IgG.

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Gluten is not the only thing that will flatten villi. Many other foods, such as gluten free oats, rice and other grains that are considered ok for celiacs can cause flatten villi. Milk, soy protein, people with crohn's disease, hepatites, parasites, and anything that basically casues diahrrea may result in flatten and damaged villi.

These individuals with damaged villi may no longer produce enzymes to digest these foods. Therefore the foods are "dumped" directly into the blood stream causing havoc with the immune system resulting in all sorts of reactions. Gluten intolerant / celiac - same thing. Both disease wreak havoc on the immune system.

Just reading this forum clearly indicates that.

This is also why the celiac tests are so unclear and so frustrating!

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Good heavens, there are MANY studies out there, much more recent than what Dr. Fine quoted.

Here is one, fromFinland, published in Gastroenterology November 24, 2008:

BACKGROUND & AIMS: The diagnostic criteria for celiac disease require small-bowel mucosal villous atrophy with crypt hyperplasia (Marsh III). However, mucosal damage develops gradually and patients may evince clinical symptoms before histologic changes appear. Endomysial antibodies are specific in predicting forthcoming villous atrophy. We hypothesized that patients with mild enteropathy but positive endomysial antibodies benefit from a gluten-free diet (GFD) similarly to patients with more severe enteropathy. METHODS: Small-bowel endoscopy together with clinical evaluations was performed in altogether 70 consecutive adults with positive endomysial antibodies. Of these, 23 had only mild enteropathy (Marsh I-II) and they were randomized either to continue on a gluten-containing diet or start a GFD. After 1 year, clinical, serologic, and histologic evaluations were repeated. A total of 47 participants had small-bowel mucosal lesions compatible with celiac disease (Marsh III), and these served as disease controls. RESULTS: In the gluten-containing diet group (Marsh I-II) the small-bowel mucosal villous architecture deteriorated in all participants, and the symptoms and abnormal antibody titers persisted. In contrast, in the GFD group (Marsh I-II) the symptoms were alleviated, antibody titers decreased, and mucosal inflammation diminished equally to celiac controls (Marsh III). When the trial was completed, all participants chose to continue on a life-long GFD. CONCLUSIONS: Patients with endomysial antibodies benefit from a GFD regardless of the degree of enteropathy. The diagnostic criteria for celiac disease need re-evaluation: endomysial antibody positivity without atrophy belongs to the spectrum of genetic gluten intolerance, and warrants dietary treatment.

From what I conclude from this study is that patients with mild enteropathy (intestinal disruption) but positive endomysial antibodies (from serologic testing) react well to the gluten free diet.

No argument from me. :D

It has always been stated here that positive blood work IS a diagnosis for Celiac Disease, regardless of a positive biopsy.

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Whats the diff?... I'll never go through a gluten tolerance test but if there is an advantage to know if its one or the other then I might look into it further.

So Eric - did we answer your question?

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I keep getting the feeling that this whole thing is like how many angels can dance on the head of a pin. The fact that no medical professional even considered doing a celiac test of any kind on me nor even considered the possibility, tells me that the medical profession cannot be trusted to handle our health care on this issue. I don't give a hoot what kind of diagnosis they would have chosen to give me had they thought to do any testing. I do not care that I was not tested nor diagnosed. I do know that after years of obvious symptoms which would have suggested such testing to an aware professional, I have ended up with two definite auto-immune diseases which are now pretty much intractable, and with the probable third of celiac which is being moderated by experimentation with my diet. None of the rest of this discussion has much relevance to my life, I'm afraid.

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Yes it did answer my question.

I personally do not think its going to matter one way or another in 2-5 years.

I spoke with a doctor last week and there is a feeling this is an unseen epidemic. I took a very unscientific poll on another board I am on on if they knew someone with Celiac's or a wheat allergy.

The numbers were staggering, way over the 1 in 100 or 1 in 133 quoted. 65 percent of the people said they had a friend/relative who had it. I truly do believe when they say near 20 percent of the population, if not higher.

Remember Gluten was added to our foods starting in the 60's and 70's. Now look at the numbers below 30 and they are way over the 1-2 percent mark.

So why does it not matter?

We went to Outback Saturday night, gluten free preparation area, flourless chocolate cake for dessert.

The Mexican restaurant is going to restrict the fryer to corn chips only, no more waitresses/waiters frying up dessert.

We tried Amici's in Royal Oak, MI last night which serves a gluten free pizza, in a gluten free area.

Went for Sushi and again Sushi Zen in Brighton, MI not only carries gluten free Tamari they were all very knowledgeable about gluten/wheat. The chefs wear gloves, they segregate what is done where and no mixing of knives. They say most of their customers have Celiac's/allergies. That is saying quite a bit for Brighton, Michigan :) Its not exactly the hot bed of activity in the state.

We made a fantastic stuffed chicken with Energy bread which for all its faults makes near 100 percent wheat bread tasting dressing.

We made Indian food last week with Pakora, or deep fried besan flour/spiced veggies.

I've been eating gluten free for just over a year, for those who have been doing it 5-10 years were their choices like that before? The market is reacting far faster than medical science it seems.

This place http://www.celiacspecialtiesshop.com/ is in Michigan and they provide the pizza dough to Amici's. It was good, not only good but good again this morning.

Their pizza dough was far far superior to Red Mills and almost as good as Sami's, in fact the owner of the Celiac Specialties is the one who found the flour in Sami's. We're off to the store in a bit to buy some at Hillers.

So as things progress options open up and I think pretty soon ordering gluten free will be as easy as ordering a diet pop versus a regular one.

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So as things progress options open up and I think pretty soon ordering gluten free will be as easy as ordering a diet pop versus a regular one.

Or a decaf coffee versus a caffeinated version :)

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The market is reacting far faster than medical science it seems.

I am convinced that the reason for this is that medical science is driven and funded by the pharmaceutical industry.

There is no $$ for them if we change our diet--in fact, they lose an ENORMOUS amount of $$ since we no longer need their drugs for IBS, bloating, diarrhea, irregularity, joint pain, reflux, etc.

Notice, though, that instead of trumpeting the easy and cost-free cure for celiac, the pharm industry is rushing to produce a pill to block the effects of gluten, so we can eat more of the poison (and deal with side effects of yet another pill, but who cares as long as they make $$?)...

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I am convinced that the reason for this is that medical science is driven and funded by the pharmaceutical industry.

There is no $$ for them if we change our diet--in fact, they lose an ENORMOUS amount of $$ since we no longer need their drugs for IBS, bloating, diarrhea, irregularity, joint pain, reflux, etc.

Notice, though, that instead of trumpeting the easy and cost-free cure for celiac, the pharm industry is rushing to produce a pill to block the effects of gluten, so we can eat more of the poison (and deal with side effects of yet another pill, but who cares as long as they make $$?)...

WELL SAID!

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I am convinced that the reason for this is that medical science is driven and funded by the pharmaceutical industry.

A great deal of basic research takes place at the University level and is funded by the government. The previous administration did not favor medical research, and a good many grants were cut.

If you would like more medical research done, write your congress-man or -woman and suggest it.

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The previous administration did not favor medical research

:blink:

Not to wade into political territory - but that's a load of bull! Perhaps you might want to qualify that in some way?

"In fiscal year 2000, the federal government spent $17 billion on the National Institutes of Health, the agency primarily responsible for medical research. President Bush is seeking to double that figure by 2003."

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I don't care if they are off topic and its my thread :)

There is much more to this story than is being told. For those with a political tone and don't thing the previous Republican administration did enough to fund medical research...well as a true fiscal conservative they shouldn't have in the first place. However I firmly believe that the overall cause of Celiac's...the liberals :)

Seriously, their efforts to feed the world produced Enriched Flour. Sure Celiacs's existed in some form or another and even now I start to wonder if introduction of wheat flour itself into the food chain is a big part of the issue. How widely used is wheat flour around the world? Not nearly like it is here in the States. Now add to the fact that they took wheat and made SUPER wheat by adding gluten so less went farther. Now 30-40 years after the fact gluten intolerance related diseases and allergies are through the roof?

We had a very very bad meal tonight. I made a Bhaji mixture(garbanzo flour, tumeric, chilli powder, green chilli's, a bunch of cilantro, and some cummin), dipped sliced up chicken breast covered in egg whites and then also dipped onions and green peppers. Deep fried them both and served them with Spicy Mint Chutney. We did deep fry it in sun flower oil at least but was it good.

There are so many alternatives out there and if I made that chicken I made tonight with some regular down south spices I doubt you could tell it wasn't wheat flour.

I'm starting to think, in relation to my second paragraph that maybe Celiac's was incredibly rare, but as wheat flour usage grew so did it. When Enriched flours came out it skyrocketed.

I wonder what the age break down is for the disease. If in fact gluten intolerance does grow into Celiac's which makes perfect sense to me. If you get a certain version of the flu your body creates an anti-body and you should never get that version again. Maybe there is a threshold. My parents and family all have sensative stomachs as my mother calls it.

I'm 36, my youngest sister is 52. The rest are all older and my parents are 78/81. So they all grew up on probably what is the purest wheat flour out there with no additives until the early 70's. I however grew up eating nothing but the enriched stuff.

I think there is a study to be performed somewhere...

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I don't care if they are off topic and its my thread :)

There is much more to this story than is being told. For those with a political tone and don't thing the previous Republican administration did enough to fund medical research...well as a true fiscal conservative they shouldn't have in the first place. However I firmly believe that the overall cause of Celiac's...the liberals :)

Eric,

As the original poster, you might already know this but, politics do not fare well here. It usually generates quite a bit of emotion to be discusses on a site for Celiac Disease. We tend to avoid topic that might be controversial.

Regarding the history of Celiac Disease, this link might be of interest to you. No liberals were mentioned in this article. :P

http://www.celiacdisease.net/assets/pdf/SU...iacCtr.News.pdf

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Eric, I'm glad you don't care about it's being off-topic--but the off-topic part is interesting enough to be a separate thread. . Maybe one of the mods would like to move this portion to its own thread?

I don't see politics playing quite the same role in celiac as you see. The "enriching" has nothing to do with gluten, it's just spraying synthetic vitamins on the flour. (When you think about it, that kind of supports the idea that bread is NOT the staff of life, unless you spray it with synthetic vitamins--hmmmm.)The development of high-gluten wheat was not to make it go farther, but to make bread and cakes come out fluffier and tastier.

And the US didn't exactly invent wheat! (Though we are responsible for quite a few disasters :( )

If you look at some of the basic prayers and blessings in both Christianity and Judaism, you'll find strong references to bread as sustenance: "Give us this day our daily bread," and the Ha-Motzi (the blessing over bread, said at every meal: "Praised art thou, O Lord our God,King of the Universe, who has brought forth bread from the earth.")

Both Christian communion wafers and Jewish Matzot are required to be from gluten-containing grains.

I think where politics gets involved is with the pharmaceutical companies--supporting their skewed studies, providing them with legal loopholes through which they can fund their own studies, and still claim that they are "independent studies," and even making certain vaccines mandatory by a certain age (see New Jersey, for example, requiring the flu shot for ALL children in public school and daycare),etc.

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I'll have to double check the Enriched flour comment...I know I had read it in the past regarding gluten being added. It is a protein and higher gluten flours would provide more nutrition per lb.

Still I believe there are far more people with a gluten problem than the numbers show. I look at the issues I had with memory, foggy brain, and all that while I had my issues.

Imagine have those through the developement years. I think gluten is related to all this ADD, ADHD, etc...take out the gluten and you'd see those numbers drop.

A woman at work has a 5 year son who has delayed speech syndrome. Took him off gluten and he is almost back to normal in just a few months.

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Imagine have those through the developement years. I think gluten is related to all this ADD, ADHD, etc...take out the gluten and you'd see those numbers drop.

A woman at work has a 5 year son who has delayed speech syndrome. Took him off gluten and he is almost back to normal in just a few months.

I totally agree. My 7yr old dd shows signs of ADHD and is very angry and quick to whine and yell and lash out if someone bugs her. She can't control her emotions. Since I've taken her off gluten, she is now, 1 month later, asking me to help teach her what she should do when she gets angry at someone and when I give her suggestions, she's actually trying them out and seeing how they benefit her! She asked me to create a checklist to help her stay focused in the morning so I don't have to nag her all morning to get stuff done to get ready for school. I can see her beginning to grasp some coping skills to help better her life. My mom keeps saying maybe it's because she's getting older, but I believe it's because of removing the gluten. It's too coincidental.

s

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Here's my take on it, and you are all free to differ. :)

Everyone here is gluten intolerant. It is the big umbrella we all sit under. None of us can tolerate gluten.

Some of us are Celiac, and our immune system is attacking our small intestines. Some of us have neurological problems, and our immune system is attacking our brains. Some of us have DH, and our immune system is attacking our skin.

But it is all because we cannot tolerate eating and/or touching gluten. So, no one is "just" gluten intolerant. We are all very gluten intolerant and we call it different things based on what part of the body it hurts most.

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