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January Flower

What's The Difference? Need Help!

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I'm new to this whole thing. And my doctor told me that i dont have the full blown Celiac Disease but more of a gluten sensitivity (based on blood test results) My main symptom was the big D and that's why i went to the Dr. to figure things out.

By not eating gluten i do feel better. Some days i feel great, others not the best. The D isn't bad, but sometimes when i eat something i end up greating really really BAD smelling gas...its soo embarrassing!! I dont want to be around anyone...and my stools are soft. But I usually only visit the bathroom once ....so its not a uncontrollable thing. Is this BAS smellling GAS a normal thing? Has that happened to anyone else??

And what's the difference with Celiac disease and just a gluten sensitivity? Should i be doing anything different?

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The treatment with both Celiac and Gluten Intolerance is exactly the same thing... total avoidance of gluten containing foods.

The major difference is that with Celiac, there is an autoimmune response by which your body literally attacks ITSELF - and causes serious internal damage. With gluten intolerance, the body is reacting in a negative way - but not attacking itself.

Pretty basic comparison, but I think it does the job.


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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I don't see what you would do any differently. Celiac disease and gluten intolerance both call for avoiding gluten. There is no other treatment for either. Since you feel better off gluten, then you should stay off it. A label won't make any difference with what you do.

Was your blood test positive or negative for antibodies? If it was negative, you should realize that there are false negatives (enough damage hasn't been done for antibodies to show up in the blood; fecal testing a la Enterolab is more sensitive and catches the problem in earlier stages). If positive, I don't know how the result would mean intolerance instead of celiac, although I'm no expert.

Some doctors won't say celiac until they've done the small intestine biopsies. But even if you have this done, it isn't going to change what you need to do, whatever the result. Some say intolerance creates problems for the body other than the villi damage which is the hallmark of celiac.

The best test for intolerance is what you've done, going off gluten and feeling better. You could always do Enterolab if you had negative blood work, to confirm that you are creating antibodies and to see if there is any malabsorption. If there is malabsorption, you have a baseline for later testing, to make sure you are healing (eliminating all that has to be eliminated). They can also test for other intolerances that can go along with gluten and be creating problems on their own. They also can do genetic testing to see if you have the genes that practically all celiacs have.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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I'm new to this whole thing. And my doctor told me that i dont have the full blown Celiac Disease but more of a gluten sensitivity (based on blood test results) My main symptom was the big D and that's why i went to the Dr. to figure things out.

By not eating gluten i do feel better. Some days i feel great, others not the best. The D isn't bad, but sometimes when i eat something i end up greating really really BAD smelling gas...its soo embarrassing!! I dont want to be around anyone...and my stools are soft. But I usually only visit the bathroom once ....so its not a uncontrollable thing. Is this BAS smellling GAS a normal thing? Has that happened to anyone else??

And what's the difference with Celiac disease and just a gluten sensitivity? Should i be doing anything different?

Symptoms of gluten sensitivity and Celiac disease are the same, and they should go away on a gluten-free diet. If you're still having minor issues on the diet, double check everything to make sure you're not accidently ingesting some small sources. You might also be getting some cross-contamination issues, where the level might not be bad enough to send you into the dumpster, but enough to let you know somethings not quite right.

You also might be gluten sensitive, but you may develope celiacs if you continue eating gluten(i.e. subclinical celiac disease)

The bad gas concerns me, from what I've learned that is usually an indicator of celiacs because it is a by-product of some mal-absorption issues. Are you having any weight loss issues? Weight loss will accopany mal-absorption. You might want to look into another doctor for testing and an endoscopy. Or have your doc retest you if you trust and like him/her and don't want to offend them.

I would also suggest reading Danna Korn's "Living gluten-free for dummies", it is an excellent resource for all areas.

Good luck


John

positive blood tests 2/07

positive endoscopy 2/07

colonoscopy with benign polyps 2/07

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I'm new to this whole thing. And my doctor told me that i dont have the full blown Celiac Disease but more of a gluten sensitivity (based on blood test results) My main symptom was the big D and that's why i went to the Dr. to figure things out....................... And what's the difference with Celiac disease and just a gluten sensitivity? Should i be doing anything different?

If your blood test is positive, and you have "the big D" often, I do not think that the doctor understands that Celiac disease, not "gluten sensitivity", is present. You may have a "mild" case, but have it nonetheless and must eat accordingly. If you do not plan on eliminating gluten from your diet based on this doctor's advice, I'd recommend getting a second opinion from a gastroenterologist, or other practitioner, that is more familiar with Celiac. Keep in mind that you may have negative blood work and still have a problem with gluten, or even Celiac. I know it's confusing. Celiac Disease is generally understood to mean that gluten can damage the villi, causing other problems.

Good Luck.


Celiac diagnosis from positive blood work & endoscope (2005)

Serologic equivalent: HLA-DQ 2,3 Subtype 2,8 (double Celiac genes)

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I've been to four doctors already, its very frustrating because they all say different things. But three out of four said that since only one of the four antibody levels was slightly raised its more a gluten sensitivingy. I was told emilimating gluten from my diet for a year , i might be able to later reintroduce things back into my diet. Their is no history of Celiac diease in my family. I believe this was trigger by a sereve intestional virus that i had right before this all started. I work in the health care field and seem to pick up alot of illness that way.

I have an appointment next week with a dietian and a gastro specialist.

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I'm no doctor, but I disagree with yours. If it just started after a virus you had, then maybe the other levels just have not raised to detectable levels yet.

I've been gluten-free for over a year and I definately am "only" gluten intolerant. Adding gluten back is NOT an option! Even the smallest amount will still make me ill. So, I also disagree that you'll be able to add it back later. If it was an "allergy" yes, maybe, but for an intolerance, no.

I would say if you don't have full-blown celiac, your condition would be better described as "pre-celiac" than gluten intolerance. Those of us with gluten intolerance don't get positive blood tests.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I think the big thing to consider and check out is WHICH test was positive. The EMA and tTG show autoimmune/anti-self reactions and are very specific to Celiac. An elevated IgA and/or Igg could mean gluten sensitivity and/or a whole other condition.

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The major difference is that with Celiac, there is an autoimmune response by which your body literally attacks ITSELF - and causes serious internal damage. With gluten intolerance, the body is reacting in a negative way - but not attacking itself.

I have a different view, not meaning to start an argument. Celiac Disease is where the autoimmune reaction is in the intestinal tract and the villi are damaged significantly. There can be other autoimmune reactions too, like thyroid problems, arthritis, skin issues, etc. With gluten sensitivity, the intestinal tract isn't damaged in the same way, but there can still be an autoimmune response and damage to other areas of the body.

I don't have the correct genes, so I can't have Celiac Disease. I am gluten intolerant or sensitive. But I do have many of the symptoms associated with Celiac. And I have 3 autoimmune conditions that are definitely associated with gluten - arthritis (in remission since going gluten-free), hypothyroid (not all the way better, but improving since going fanatically gluten-free) and a kidney problem that went totally into remission after going gluten-free. I also have psoriasis, which, unfortunately, hasn't cleared up totally for me. Gluten does cause my body to attack itself. I was also told that if I avoided wheat/gluten for a few years I'd be able to add it back. I had disastrous results when I did and have come to the conclusion that this is for life, but it's a healthy life, so I'm okay with it.

This is my opinion only, but I think that Celiac Disease is just one of the many manifestations of gluten intolerance. The damage to the villi is the only thing that they can test right now that can give a firm diagnosis, but someday maybe someone will figure out some other tests that can conclusively link gluten intake to damage in other parts of the body.

There are other conditions that can cause either temporary or permanent gluten sensitivity (leaky gut, Lyme disease, etc.) that should be investigated if going gluten-free doesn't clear up your symptoms.

You need to take everything that any doctor tells you with a grain of salt and figure out what makes you feel good. If eating gluten-free helps, great. Be sure you are TOTALLY gluten-free. You might need to eliminate dairy, soy or eggs too, if you're still not all the way better. Listen to your body!


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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I've been to four doctors already, its very frustrating because they all say different things. But three out of four said that since only one of the four antibody levels was slightly raised its more a gluten sensitivingy. I was told emilimating gluten from my diet for a year , i might be able to later reintroduce things back into my diet. Their is no history of Celiac diease in my family. I believe this was trigger by a sereve intestional virus that i had right before this all started. I work in the health care field and seem to pick up alot of illness that way.

I have an appointment next week with a dietian and a gastro specialist.

Hi January Flower,

It is a very frustrating situation to be in. Blood tests alone cannot give a "certified" diagnosis of celiac sprue,but along with symptoms and co-existing conditions,can point us to the need for biopsy to prove celiac sprue exists. The antigliadin antibodies represent most closely anti-gluten status. Endomysial and tissue transglutaminase antibodies represent anti-self; or that your body has started to make antibodies against GI tissues. There is really no "official" distinction between gluten intolerance and celiac. But I think the GI world is starting to see that there should be another category of non-celiac gluten sensitives. It is hard enough for most of them to wrap their minds around celiac sprue alone, much less to start thinking outside the box for gluten sensitives! I know there are lots of forum members who feel it is established by enterolab. I know a phenomenal female GI here in Memphis who is extremely celiac aware and she has never heard of enterolab! Nor of Ken Fine! She is a former medical school professor who is now in private practice and routinely

looks for celiac disease in appropriate patients. My point is not to slam Dr Fine..really...I met him and there is no doubt he is very sincere in his desire to help patients with this constellation of symptoms...I just mean to let you know sometimes it is extraordinarily difficult to make the diagnosis. All said, the dietician and GI hopefully will complete your evaluation . When it is complete( and I really advocate eating gluten until the GI sees you), you can decide if you want to go glutenfree with or without a "paper" diagnosis.


Iron deficiency without anemia, unexplained weight loss 2/2003

Positive celiac biopsy 4/2003

Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

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The major difference is that with Celiac, there is an autoimmune response by which your body literally attacks ITSELF - and causes serious internal damage. With gluten intolerance, the body is reacting in a negative way - but not attacking itself.

That's actually not quite right. You still get the autoimmune response, leaky gut, etc with gluten sensitivity. Officially the only difference is that with celiac disease you have flattened villi and with gluten sensitivity you don't. But both things make people very sick. Most doctors don't recognize there's anything called non-celiac gluten sensitivity, but there are sure a lot of people who know they have it!

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I've been to four doctors already, its very frustrating because they all say different things. But three out of four said that since only one of the four antibody levels was slightly raised its more a gluten sensitivingy. I was told emilimating gluten from my diet for a year , i might be able to later reintroduce things back into my diet. Their is no history of Celiac diease in my family. I believe this was trigger by a sereve intestional virus that i had right before this all started. I work in the health care field and seem to pick up alot of illness that way.

I have an appointment next week with a dietian and a gastro specialist.

I too thought I had "gluten sensitivity" for 10 years and my dr. was not inclined to recommend biopsy until after my symptoms increased in severity. Save yourself the pain of the increase in severity and get a biopsy of the small intestine now. I had played with gluten-free diet for 10 years cause I thought I only had a "sensitivity". By eliminating gluten part time the damage is lessened and only under a microscope can the damage be seen. Anyway this seems to be my experience. I am all for the biopsy. Find a doctor that will work with you!!!

I was diagnosed celiac just recently and finally feel I have a chance to get my life back on the right track.

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My IgG Anti-Gliadin was raised. My results said a range between 0-11 is normal mine was 14. My IgA was normal.

What does this mean?

Was your total IgA checked? Some people are IgA deficient.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Was your total IgA checked? Some people are IgA deficient.

Excellent point, CarlaB. Also note no tissue transglutaminase or endomysial antibodies were done. Still, you got to give them credit for getting this far and pursuing it !!

JanFlower, the AGA antibodies are least specific for celiac....the above 2 are the most specific for diagnosing via serologies....conversely, AGA are the most sensitive. That means it picks up a problem but doesn't necessarily tell you what it is. So keep us posted after your visits next week and in the meanwhile, ask away!


Iron deficiency without anemia, unexplained weight loss 2/2003

Positive celiac biopsy 4/2003

Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

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That's actually not quite right. You still get the autoimmune response, leaky gut, etc with gluten sensitivity.

I tend to believe that yes, you do still get the autoimmune response from gluten intolerance when there is leaky gut. However I dont believe that gluten is causing the leaky gut on its own. I believe that many factors contribute to leaky gut and the end result is a gluten intolerance along with other autoimmune conditions and associated symtpoms of leaky gut.

When you have leaky gut you dont simply react to gluten....you react to a whole variety of things which are entering the bloodstream....including bacteria, fungi, parasites, toxins, etc. All of these things can trigger autoimmune problems. Eliminating gluten doesnt necessarily correct the entire problem...gluten is not the leading factor associated with the development of leaky gut.

I think once you've got gluten leaking into your bloodstream....whether or not you have Celiac...this is going to cause you some problems and you would need to remain on the diet.

I am just not in the belief that gluten is actually causing the chain of events in the first place. I think the damage to the intestinal lining from a combination of factors.......environmental toxins, pharmeceutical, dietary, infections, etc....all can lead to a leaky gut and this allows for the immune system to launch an attack on gluten and other foreign invaders which then enter the bloostream.

The immune response is real and it can lead to autoimmune disease but when you remove gluten and dont actually do anything to fix the leaky gut....there are still foreign invaders leaking in and you are still at risk for developing more autoimmune disease.

Thats my take on it....


Rachel

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This is sort of on the same subject. I recently read this and I am not sure what it means.

Feb 07 - IgM reactions.

I've only just heard about this group and can't tell you much. IgM is a class of antibodies found in circulating body fluids. IgM antibodies are the first antibodies to appear in response to an initial exposure to an antigen. Apparently the IgM's are sometimes the only place where the gluten reactivity shows up - which may explain why some people test clear for gluten, yet have definite symptoms when they eat it.

Anyone heard about this?

Peggy


"The only thing constant in life is change"

Celiac not confirmed, but positive results with diet change

Gluten free since 10/06

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This is the web site where I read what I put above.

http://www.frot.co.nz/dietnet/basics/gluten.htm#diagnosis


"The only thing constant in life is change"

Celiac not confirmed, but positive results with diet change

Gluten free since 10/06

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I am not familar with IgM antibodies having any involvement in food intolerance. IgM antibodies are the first antibodies produced to fight infection. They have no involvement in testing for food intolerance or allergy.

Here is a description of each class of antibody and its function

The five major types of antibodies are:

IgA. IgA antibodies are found mainly in areas of the body such the nose, breathing passages, digestive tract, ears, eyes, and vagina. IgA antibodies protect body surfaces that are exposed to the outside from foreign organisms and substances. This type of antibody is also found in saliva and tears. About 10% to 15% of the antibodies usually present in the body are IgA antibodies. A small percentage of people do not make IgA antibodies.

IgG. IgG antibodies are found in all body fluids. They are the smallest but most abundant of the antibodies, normally comprising about 75% to 80% of all the antibodies in the body. IgG antibodies are considered the most important antibodies for fighting bacterial and viral infections. IgG antibodies are the only type of antibody that can cross the placenta. Therefore, the IgG antibodies of a pregnant woman can also help protect her baby (fetus).

IgM. IgM antibodies are the largest type of antibody. They are found in blood and lymph fluid and are the first type of antibody produced in response to an infection. They also cause other immune system cells to produce compounds that can destroy invading cells. IgM antibodies normally comprise about 5% to 10% of all the antibodies in the body.

IgD. IgD antibodies are found in small amounts in the tissues that line the abdominal or chest cavity of the body. The function of IgD antibodies is not well-understood. They appear to play a role in allergic reactions to some substances such as milk, some medications, and some poisons.

IgE. IgE antibodies are found in the lungs, skin, and mucous membranes. They cause the body to react against foreign substances such as pollen, fungus spores, and animal dander. IgE antibody levels are often high in people with allergies.


Rachel

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I'm hoping my trip to the dietian will be helpful. I really am finding it hard to find a good doctor, like i said i've been to four already and none of them have been ANY help. I guess the biopsy would help, i just dont want to have to go through all these tests .

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I am not familar with IgM antibodies having any involvement in food intolerance. IgM antibodies are the immune systems first line of defense against infection. They have no involvement in testing for food intolerance or allergy.

Here is a description of each class of antibody and its function

The five major types of antibodies are:

IgA. IgA antibodies are found mainly in areas of the body such the nose, breathing passages, digestive tract, ears, eyes, and vagina. IgA antibodies protect body surfaces that are exposed to the outside from foreign organisms and substances. This type of antibody is also found in saliva and tears. About 10% to 15% of the antibodies usually present in the body are IgA antibodies. A small percentage of people do not make IgA antibodies.

IgG. IgG antibodies are found in all body fluids. They are the smallest but most abundant of the antibodies, normally comprising about 75% to 80% of all the antibodies in the body. IgG antibodies are considered the most important antibodies for fighting bacterial and viral infections. IgG antibodies are the only type of antibody that can cross the placenta. Therefore, the IgG antibodies of a pregnant woman can also help protect her baby (fetus).

IgM. IgM antibodies are the largest type of antibody. They are found in blood and lymph fluid and are the first type of antibody produced in response to an infection. They also cause other immune system cells to produce compounds that can destroy invading cells. IgM antibodies normally comprise about 5% to 10% of all the antibodies in the body.

IgD. IgD antibodies are found in small amounts in the tissues that line the abdominal or chest cavity of the body. The function of IgD antibodies is not well-understood. They appear to play a role in allergic reactions to some substances such as milk, some medications, and some poisons.

IgE. IgE antibodies are found in the lungs, skin, and mucous membranes. They cause the body to react against foreign substances such as pollen, fungus spores, and animal dander. IgE antibody levels are often high in people with allergies.

Thanks RAchel, guess I am still trying to find out wh if y my Fecal Antigliadin IgA was 9 (Normal Range <10 Units) and Fecal Antitissue Transglutaminase IgA were 6 Units (Normal Range <10 Units) which are all in the normal range with enterolaab and yet I still have a very strong reaction when I accidently consume gluten. I know the diet is the best indicater out there but it is frustrating. I am not willing to eat gluten for 2 months just to get the scope. I dont get as sick as a lot of you, just all of the typical digestive problems and maybe DH. I still have some malabsorbtion problems according to the tests. Of couse since I dont have the Celiac gene according to enterolab, I dont see how I could have DH, but what ever it was it went away when I went gluten-free.


"The only thing constant in life is change"

Celiac not confirmed, but positive results with diet change

Gluten free since 10/06

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gluten-free Memphis,

Do you have the name of the GI you spoke of? I would like to tell my mother who lives in Memphis. She is just starting the gluten-free diet and has had unexplained siezures and other health issues for years. After looking into this and taking gluten out of my diet because my son was allergic to it with an Ig-E mediated response, then I have been pretty much gluten free and encouraging her to do it for a while. I want her to see someone who will take it seriously.

Thank you.

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