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Guest Doll

What Do You Think Triggered Celiac For You?

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Oh, and I have been thinking about this and here are some more questions:

1. Do we know the classification of hypersensitivity reaction involved with celiac disease?

2. Could it be possible that more than one pathway in the autoimmune reaction could be involved for different individuals? Therefore we may have blood tests for the mechanisms in which IgA is involved, but how do we know there aren't other pathways that we don't understand yet and therefore don't have blood tests for? There just seems to be too many people that don't fit into those narrow diagnostic criteria of positive bloodwork, but clearly have an autoimmune response to gluten, but undetected by what our current tests are looking for.

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Oh, and I have been thinking about this and here are some more questions:

1. Do we know the classification of hypersensitivity reaction involved with celiac disease?

2. Could it be possible that more than one pathway in the autoimmune reaction could be involved for different individuals? Therefore we may have blood tests for the mechanisms in which IgA is involved, but how do we know there aren't other pathways that we don't understand yet and therefore don't have blood tests for? There just seems to be too many people that don't fit into those narrow diagnostic criteria of positive bloodwork, but clearly have an autoimmune response to gluten, but undetected by what our current tests are looking for.

I learned a long time ago that medical science isn't perfect. I've learned in the last 6 months that if you listen to your body it tells you when something is really wrong and at that point go from Dr. to Dr. if you have to. It will be worth it in the end!

There are still alot of things medicine doesn't understand. Every person is diffrent so no 1 test will dx someone. You could run 10 diffrent tests on the same person for the same thing and they still might comeback with nothing even though there is something really wrong. I tend to be one of those people that there is never a clear cut answer to anything they test me for no matter what the area or subject. It sucks but you really learn to listen to your body and know when to fight. If my celiac disease hadn't been found when it was I'd be pretty close to death right now. Trying the diet and then breaking it was the only thing that proved it.

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Guest Doll
Have you looked at the Apr 2004 study in Digestive Diseases and Sciences? Their study suggests the blood work is not as sensitive as initially thought.

No. The studies I have seen have said that overall, bloodwork *does* pick up most cases that have intestinal damage, but of course there will always been some exceptions. I would like to read more. I will try to look it up, but do you have a link?

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Guest Doll
Oh, and I have been thinking about this and here are some more questions:

1. Do we know the classification of hypersensitivity reaction involved with celiac disease?

2. Could it be possible that more than one pathway in the autoimmune reaction could be involved for different individuals? Therefore we may have blood tests for the mechanisms in which IgA is involved, but how do we know there aren't other pathways that we don't understand yet and therefore don't have blood tests for? There just seems to be too many people that don't fit into those narrow diagnostic criteria of positive bloodwork, but clearly have an autoimmune response to gluten, but undetected by what our current tests are looking for.

Hey Spike! I'm not entirely sure if I'm understanding your question correctly (forgive me if I'm wrong), but Celiac Disease is IgA and IgG mediated, whereas "allergies" are IgE mediated. Yes, it is a different immune response. Celiac Disease is classified as an autoimmune disease due to this.

As far as we know (key word), an autoimmune response is an autoimmune response. In theory, it would be the same in all people. There is a chance though that people with different genetics may react to different triggers and still get the same disease. In the case of Type 1 diabetes (another autoimmune disease), not all people test positive for antibodies (or only some of them) when they clearly have Type 1 diabetes. About 20% of children with Type 1 do not show at least one type of the antibodies found in Type 1 diabetes.

My current position (not that it will never change), is that the vast majority of people who react to gluten and do *not* have any antibodies, positive biopsy, etc. *do not* have an autoimmune response to gluten (Celiac Disease), but rather some form of allergy or difficulty breaking down gluten. If gluten has been altered by genetic engineering (thanks Monsanto!), then this may account for the increase in "gluten intolerance". As we know, genetics have not changed in the past 50 years, but allergies and "intolerances" have increased dramatically. There must be something in our environment that has changed. Before, Celiac Disease/GI was not common, and I don't think that was *only* because it was underdiagnosed. People are coming out of the woodwork with these symptoms that were never seen in such large numbers before.

I think it is *possible* that our current tests are missing some Celiac cases, but overall, I think the problem is that most people do not have Celiac per se, but rather some other form of gluten intolerance/allergy/difficulty breaking it down that is not autoimmune in nature.

Some people may even be born with an innate inability to process gluten, but this would *not* be Celiac Disease. I would compare this to a version of PKU. There are people on here that have said that those with DQ1 genes cannot seem to tolerate gluten. As far as I know, most with Celiac have a different set of unrelated genes.

Remember, this is only what *I* personally think based on the facts I know.

P.S. In people with Celiac, antibody levels may wax and wane. Meaning that you might have to have 3 rounds of testing to get a positive result. This is unlikely to be needed in a late case with severe damage, but this may apply to an early case with little intestinal damage. I think the problem is that doctors look at Celiac as a "gluten intolerance", "genetic allergy to wheat", or gastro disorder, instead of viewing it for what it is, an autoimmune disease. It's like calling Type 1 diabetes an "metabolic disorder", which it's really not. It's an autoimmune disease. It's Type 2 diabetes (the common kind related to obesity) that is a true metabolic disorder.

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Doll, great thread! (and I like your note about the gluten-free wedding!!)

I have always had a "sensitive stomach" but the major symptoms didn't really kick in until about age 10. There isn't anything major that happened (that I can recall) but my parents did get divorced, and it was messy, so maybe it was stress related. But when I was discussing all of this with my Mom, she said that as far back as she could remember, I had bad "D" and upset stomachs a lot. I am 24, and I was diagnosed 2 years ago. Thats my story in a nutshell. (oh, and I am German, Irish, Scottish, some Native American, mostly European)

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The studies I have seen have said that overall, bloodwork *does* pick up most cases that have intestinal damage, but of course there will always been some exceptions

Doll, truthfully, I have heard more false negatives than anything else.

I think there is a lot we don't know yet. I would propose terminology such as seronegative celiac and seropositive celiac. If we attach celiac to only seropositive cases, maybe the word should be changed because the diagnosis of celiac was around long before the bloodtest was available.

Spikemoore--I totally agree with you, there is a lot more that needs to be known before this disease is understood. The gold standard for diagnosis is flatten villi, for now. That's only because they haven't discovered other ways of testing, as of yet. Even endoscopy is not always conclusive, the test is only as good as the doctor doing it. If he/she doesn't take enough samples, or do not find the right spot, or, or, or. Too much is not understood about celiac disease. In the book, "The Gluten Connection" by Shari Lieberman PhD, there is an Foreword written by Dr. Stephen T Sinatra MD. He states there is Aquired Celiac Disease also, his own son has it. He states in the book:

As you can imagine, when my own grown son complained of GI symptoms of bloating, diarrhea, and gas, along with a 40-50# weight loss, I became concerned. I took him to more than a dozen top doctors and specialists across the country, but the puzzle pieces didn't fall into place. He even went to the Mayo Clinic and saw specialists in endocrinology and neurology and had a muscle biopsy done by the general surgery service.

Although laboratory tests showed multiple laboratory abnormalities, a diagnosis was still uncertain. Finally, he found a physcian-expert in enviromental biotoxins, who diagnosed him with aquired glaidin allergy.

Celiac disease responds well when gluten---the trigger food-product ingredient--is removed from the diet. Now, I am sure that many people are still undiagnosed and are still suffering, totally unaware about this bizzare form of aquired celiac disease. But people with celiac disease who continue to eat gluten risk tremendous health consequences, including a host of medical and autoimmune disorders and a higher risk of bowel cancer.

Furthermore, the longer they go undiagnosed, the more damage occurs to their intestines and the rest of their body. Clearly, when my son Step takes in any gluten, his health takes a step backwards. Even though he does not have genically predetermined celiac disease, the aquired type of celiac disease that he does have still requires the emimination of gluten from his diet.

This statement from Dr. Sinatra confirms what I have always believed. There are many forms of celiac disease, not just genetic.

I am not a doctor diagnosed celiac, only because of the cost at the time. My sister is a diagnosed celiac and our father has been gluten free now for almost 3 yrs. There is no doubt in my mind that he and I are celiac too and I urge all my kids to be tested. I think there is so much more that needs to be researched about celiac disease.

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I think what is evolving in my thoughts here is that there may be many different mechanisms of damage and its a bit of a moot point as to what an individual's mechanism of damage is, ie, what type of hypersenistivity reaction they have (there are 4 and they are all an immune response and I believe that they can all cause tissue damage, but not all of them are autoimmune, infact as I type this I am trying to think if I know if celiac is truly autoimmune, because the damage to the gut occurs in the gut, maybe refractory celiac is autoimmune and maybe celiac is more of a type II or III, the immune complex hypersensitivity reaction that causes the villi damage and is reversible by stopping gluten and the villi are repaired and the blood levels of antigens drop).

I am wondering if there may be more than one type of reaction and this may explain why different people react immediately or over a longer time period when they accidentally eat gluten.

It's also very interesting to think about the related conditions and how they vary so widely in so many of us, but when gluten is stopped, they resolve.

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Although laboratory tests showed multiple laboratory abnormalities, a diagnosis was still uncertain. Finally, he found a physcian-expert in enviromental biotoxins, who diagnosed him with aquired glaidin allergy.

Basically, aquired gluten intolerance is a completely seperate issue. I have an "aquired" gluten intolerance brought on by environmental biotoxins. You can see them all listed in my signature.

Yes, if I eat gluten I will take a step backward with my health. If I eat a bunch of processed food I'll take a step back, if I drink alcohol I'll take a step back, if I wear perfume I'll take a step back, etc, etc.

In no way is this related to Celiac Disease....I do not have damaged villi, I do not have the antibodies (Bloodwork IgA) and I do not have the genes.

This is brought on by damage to the intestinal lining due to a heavy load of biotoxins and other toxins which have accummulated in my body. The gluten intolerance is the result...not the cause.

This does NOT have to be a life-long thing since the autoimmune response is not there as it is in Celiac. With proper treatment and healing the gluten intolerance may not be permanant.

An aquired gluten intolerance is just what it says it is....its aquired because of *another* problem in the body. Its no different from a person taking antibiotics and then "aquiring" a yeast infection. The yeast infection need not be permanant but of course if your body is unable to eradicate it on its own...and you do nothing to treat it...it can go on forever.

So people who have an "aquired" gluten intolerance along with other health issues....especially ones having to do with biotoxins....will never be well if they are not addressing the underlying issue...which would be the biotoxins. Avoiding gluten is VERY helpful but its not going to bring that persons health back.

I dont see how this aquired gluten intolerance has any relationship to Celiac Disease.

This is an immune response which is occuring because gluten is passing through the gut and into the bloodstream....in this situation the immune system is reactive to *many* things that are passing through the leaky gut...including fungi, bacteria, parastites, etc. In this situation gluten is a symtpom of a larger problem....you can avoid it and feel better but until you address the biotoxins....the situation will remain the same.

This is the exact reason many autistic kids do much better on a Gluten-free Casein-free diet....they have a toxic illness...they have leaky gut, yeast issues, other infections (Lyme is very commonly found), heavy metal toxicity, etc.

Obviously these kids should not do things which will worsen their situation.....because of the leaky gut a Gluten-free Casein-free diet is recommended.

Clearly, when my son Step takes in any gluten, his health takes a step backwards. Even though he does not have genically predetermined celiac disease, the aquired type of celiac disease that he does have still requires the emimination of gluten from his diet.

My situation also requires the elimination of gluten....it requires the elimination of anything which brings more stress on my body. I do not refer to it as a form of Celiac Disease because thats not what it is.

I also lost a alot of weight, was very ill, unable to work, a long list of symptoms which could be identical to those caused by Celiac...but thats not actually what it is, which is why all the testing was negative. The only positive testing came from Enterolab...which we know cannot diagnose Celiac...only a sensitivity to gluten....they cannot diagnose a CAUSE.

Every Dr. treating me recommends a gluten free diet as well as dairy free. These Dr.'s dont treat Celiac Disease...they treat chronic illnesses brought on by toxicity ( heavy metals, biotoxins, etc). These conditions damage the gut. They treat people like me and they treat Autistic children.

This is one of many things my Dr. suggested for reducing body burden (toxicity) in a recent presentation she gave.

Diet- If not doing lab testing at least try to avoid major food allergens like gluten and dairy and choose foods containing fewer artificial ingredients and preservatives - Gluten and cow dairy increase the mucoid layer in the intestines and contribute to inflammation and poor nutrient absorption

So yes...people who are already ill and suffering from leaky gut and high toxicity in the body can definately take step backwards when consuming gluten. There were many things listed to reduce the body burden.....this was one of those things. Its not a "cure" for biotoxin illness....its not a cure for mercury toxicity....its not a cure for autism. In these cases its a consequence and not a cause.

The differences between Celiac Disease and aquired gluten intolerance seem quite clear to me. Of course when a person is on the diet for health reasons (or otherwise) they can call it Celiac...they can call it whatever they want (I call it gluten intolerance by choice) but scientifically they are not the same at all. Aquired gluten intolerance does not involve the same autoimmune response and need not be life-long....depending on how effectively all other factors of the illness are treated.

These are examples of Biotoxins. Note that gluten is not on the list.

Biotoxins: such as tetanus toxin, botulinum toxin (botox), ascaridin (from intestinal parasites), unspecified toxins from streptococci, staphylococci, lyme disease, clamydia, tuberculosis, fungal toxins and toxins produced by viruses. Biotoxins are minute molecules (200-1000 kilodaltons) containing nitrogen and sulfur. They belong to a group of chemical messengers which microorganisms use to control the host

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Thank you for your insights. Your post was very interesting.

I am still interested in the mechanism of damage of the villi.

So, if we consider a seropositive person, the primary damage is to the villi based on the fact that the antibodies produced by the body in response to gluten (whatever triggered them, be it a pathogen, stress) that then attack the villi based on autoantigens on the surface of the villi, right? I think that is the basic model of autoimmune disease.

These antibodies circulate in the blood, but the primary site of damage happens to be the intestine. Maybe they don't attack elsewhere (other than DH) as it would require a similar protein on the surface of the tissue being attacked and this should be identifiable. In DH, they check for IgA in the sample, but I have not heard of this being done with gut biopsies, but maybe they do.

I would imagine that by presence of inflammation from autoimmune attack in the small intestine, all celiacs should have by nature a leaky gut as well.

So malabsorption should be secondary to flattened villi from celiac or leaky gut then since leaky gut is inflammatory. And gluten in the bloodstream may be responsible for other symptoms. I would think that gluten in the bloodstream would be able to be tested, but I don't know whether it is or isn't available.

Hmmm....so much to think about.

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Guest Doll
Doll, truthfully, I have heard more false negatives than anything else.

Spikemoore--I totally agree with you, there is a lot more that needs to be known before this disease is understood. The gold standard for diagnosis is flatten villi, for now. That's only because they haven't discovered other ways of testing, as of yet. Even endoscopy is not always conclusive, the test is only as good as the doctor doing it. If he/she doesn't take enough samples, or do not find the right spot, or, or, or. Too much is not understood about celiac disease. In the book, "The Gluten Connection" by Shari Lieberman PhD, there is an Foreword written by Dr. Stephen T Sinatra MD. He states there is Aquired Celiac Disease also, his own son has it. He states in the book:

This statement from Dr. Sinatra confirms what I have always believed. There are many forms of celiac disease, not just genetic.

I am not a doctor diagnosed celiac, only because of the cost at the time. My sister is a diagnosed celiac and our father has been gluten free now for almost 3 yrs. There is no doubt in my mind that he and I are celiac too and I urge all my kids to be tested. I think there is so much more that needs to be researched about celiac disease.

First of all, I do not doubt that you have Celiac, or at least a leaky gut (which may cause GI issues even without the genes for Celiac) with your family history. You have said that you have not been tested because of cost, but I'm sure it's likely you would test positive. I would not clump you into the "gluten sensitive" but non-Celiac category. I wish I could help pay for your Dx! If I was done school, I would! :)

All forms of *Celiac Disease* are in fact "genetic" with an environmental trigger, just like all autoimmune diseases. It is not 100% genetic nor 100% environmental, both are needed for the disease to show itself.

I don't know what to make of "The Gluten Connection" book. First of all, this doctor says his son has a "gliadin allegry", then calls it Celiac. This is not the same thing, Celiac is not classified as an allergy. Second, those with Celiac must have the genes to get it based on what we know, period. If he is referring to an "aquired allergy" to gluten, he should not be calling it Celiac Disease.

Second, this is what is off the website: "If you are gluten sensitive, your body does not have the ability to break down and digest gluten, a protein found in wheat, barley, and rye. Your body reacts to gluten as if it were a virus. It launches an immune reaction that can cause or worsen a wide range of chronic health problems."

This is *not* what Celiac is. They are describing Celiac like lactose intolerance, which is not the case. I say they are talking about Celiac because they mention what sounds like an autoimmune response. It sounds like they are confusing Celiac and an intolerance, or don't know the difference between the two.

Is anyone else here questioning this???

The fact is, only 10% of the population has an autoimmune disease of any kind. Thery're not rare, but this book makes it sounds like the entire population has a problem with gluten. Where do they get the fact that "81% of people" are prone to GI? Beware of books that promise you the moon and instant health. I would hate for someone to think they have "Celiac" when they really don't, self treat themselves, and then get sicker. This seems to happen a lot to some people on the board. I am 100% for anyone who wants to be gluten-free for any reason. I jsut want to point out that gluten may *not* be the cause, and people need to be aware.

P.S. Rachel-24, I am with you 100%. Thanks for your post!

I love reading everyone's stories, thank you!

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Guest Doll
Thank you for your insights. Your post was very interesting.

I am still interested in the mechanism of damage of the villi.

So, if we consider a seropositive person, the primary damage is to the villi based on the fact that the antibodies produced by the body in response to gluten (whatever triggered them, be it a pathogen, stress) that then attack the villi based on autoantigens on the surface of the villi, right? I think that is the basic model of autoimmune disease.

These antibodies circulate in the blood, but the primary site of damage happens to be the intestine. Maybe they don't attack elsewhere (other than DH) as it would require a similar protein on the surface of the tissue being attacked and this should be identifiable. In DH, they check for IgA in the sample, but I have not heard of this being done with gut biopsies, but maybe they do.

I would imagine that by presence of inflammation from autoimmune attack in the small intestine, all celiacs should have by nature a leaky gut as well.

So malabsorption should be secondary to flattened villi from celiac or leaky gut then since leaky gut is inflammatory. And gluten in the bloodstream may be responsible for other symptoms. I would think that gluten in the bloodstream would be able to be tested, but I don't know whether it is or isn't available.

Hmmm....so much to think about.

You are very right that all Celiac's have a leaky gut. Alba Theraputics is working on a drug to close that. :) Anti-gliadin antibodies are considered to be markers of a reaction to gluten. Just as we test HIV antibodies and not the AIDS virus in the blood itself, we do the same with an immune response to gluten. The new TtG test measures an enzyme that is released in other cells outside the intestine in Celiac's. Usually Celiacs have a high level of both EMA (damage in the intestines) and TtG.

Note that those without positive bloodwork can have an autoimmune repsone. These people will *usually* always have a positive biopsy though. I do agree that some cases can be missed, but most are not. However, these tests are not always accurate in children.

I personally think it is important to make the distinction between Celiac and "gluten intolerance" (nothing shows up in testing and it is not autoimmune). They are not the same problem. People with both each have valid conditions of course, it's just that they should should not be clumped together.

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Guest Doll

Here is an article that explains Celiac related bloodwork:

Serologic and Genetic Testing

Serologic panel

Of the commercially available serologic tests that aid in the diagnosis of celiac disease, no one test is ideal. Using multiple serologies increases the diagnostic yield. Therefore, in the United States, screening in patients with possible celiac disease should consist of a panel of the following serologic tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

The reason for the use of the panel to detect celiac disease is several fold. They include selective IgA deficiency (SIgA deficiency), lack of concordance of endomysial antibody and tTG, and the occurrence of seronegative celiac disease. Some of the pitfalls in the serodiagnosis are shown in Table 1.

Selective IgA deficiency (SIgA deficiency)

SIgA deficiency occurs 10 to 15 times more commonly among people with celiac disease compared to the general population [19]. Patients with SIgA deficiency will lack IgA antibodies including endomysial antibody, tTG and IgA AGA. To detect celiac disease in patients with SIgA deficiency an IgG antibody, typically IgG AGA, needs to be performed together with total IgA level. Alternatively, one may screen with IgG anti- EMA or IgG anti-tTG, though these are not widely available. Typically the patient with celiac disease and SIgA deficiency will have a positive IgG AGA and absent total IgA level. This combination should prompt a biopsy, whereas an isolated positive IgG AGA would usually not.

Lack of concordance of endomysial antibody and anti-tTG

The discovery that the enzyme tissue transglutaminase (tTG) was the autoantigen for the endomysial antibody [20] prompted the development of ELISA testing for tTG. This allowed automation of the test for the detection of anti-tTG. The measurement of the EMA required a cumbersome, observer dependant immunoflourescence technique. As a result many laboratories have replaced the endomysial antibody with the anti-tTG test. However the test does not measure the same thing and there are differences in preparation of the antigen (tTG), either tTG from guinea pig liver or human tTG, preparation of the kits and cutoff values for each patient population. In addition there may be other antigens, apart from tTG , for the EMA [21]. The EMA is certainly the gold standard in the serologic diagnosis of celiac disease, for it is virtually 100% specific. However multiple cases have demonstrated that patients may be positive for one (either EMA or anti-tTG) and negative for the other, i.e. they lack 100% concordance [22-25]. As a result reliance on the anti-tTG as a single test will underestimate the presence of celiac disease and both the EMA and the anti-tTG should be performed.

Seronegative celiac disease

Both the anti-tTG and the EMA titers correlate with the severity of villous atrophy [26-29]. As a result in the presence of partial villous atrophy either antibody may be negative. In addition the mode of presentation of the celiac disease, i.e. presence of silent or subclinical celiac disease may be associated with a negative EMA [30]. Clinically seronegative celiac disease is similar to sero-positive celiac disease [23, 28] In view of the possibility of the presence of celiac disease in the absence of a positive anti-tTG or endomysial antibody the presence of a positive IgA AGA should prompt a biopsy [13]. Several studies have demonstrated that reliance on either anti-tTG or endomysial antibody as a single test will underestimate the prevalence of celiac disease [23, 25, 31, 32].

Causes of false positive celiac serologic tests

The endomysial antibody test is virtually 100% specific for celiac disease. However anti-tTG has been reported to be positive in the presence of liver disease, especially cirrhosis [33], diabetes [34, 35] and severe heart failure [36], as well as arthritis [37] and various autoimmune disorders [38]. The use of human tTG as the antigen in the test kit adds some greater specificity. Antigliadin antibodies may be present in inflammatory bowel disease [39], collagen vascular disease [40], and in many healthy people as well [41].

Positive serologic tests in the presence of a normal biopsy

This situation occasionally arises. The presence of a positive EMA with a normal biopsy indicates either the presence of celiac disease that was not detected in the biopsy, either because of too few pieces being taken or misinterpretation. The biopsy should be reviewed by an expert gastrointestinal pathologist. If it is considered to be truly a normal biopsy the patient may well have latent celiac disease and will probably develop the disease at a later date.

Genetic testing for celiac disease

Celiac disease is a multigenic disorder associated with HLA-DQ2 (DQA1*05/DQB1*02) or DQ8 (DQA1*0301/DQB1*0302). HLA DQ2 is expressed in the majority (>90%) of those with celiac disease and DQ8 in about 8%. The expression of these HLA-DQ2 or DQ8 molecules is necessary but not sufficient to develop celiac disease and accounts for only about 50% of the genetic component of the disease. Studies in sibling (sib recurrence risk for celiac disease of 10%) [42] and of identical twins (concordance of 70%) [43] suggest that the contribution of HLA genes in celiac disease is less than 50%. The determination of the presence of HLA DQ2 or DQ8 is now available commercially. The role in the diagnosis of celiac disease is however limited because of the low specificity of the test for celiac disease. These HLA types are present in about 30% of the normal population. Their absence is useful in excluding celiac disease. The role in assessment of the presence of HLA DQ2 or is: 1. In the presence of an equivocal biopsy, 2. When someone is already on the diet, 3. To determine which family members should be screened for celiac disease.

Table 1: Serologic tests for celiac disease--pitfalls

Serology

Comment

AGA

Relatively non-specific

Anti-EMA

Highest overall sensitivity and specificity, but poor sensitivity in patients with partial villous atrophy

Anti-tTG

Sensitivity and specificity not equivalent to anti-endomysial antibody, Less sensitive in partial villous atrophy

Total IgA

Screens for IgA deficiency. Often present if IgA deficient and one of the following present: IgG AGA, IgG anti-endomysial antibody, IgG anti-tTG.

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If he is referring to an "aquired allergy" to gluten, he should not be calling it Celiac Disease.

I agree...and after reading this I cant say I want to run out and buy this book. I have no problem with people labeling themselves Celiac if thats what they choose to do.....but I think its irresponsible for a Dr. to make a statement like this in the foreword of a book which is meant to be informative.

Its obviously not Celiac Disease that his son has....and so now he has come up with "Aquired Celiac Disease"....which he is saying is another form of Celiac Disease in which you dont need a genetic predisposition to "aquire"??

I think its very misleading and unfortunately people will read this and not get accurate information about Celiac Disease.

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I have always been constipated as a kid, my mom would force me to eat stewed pruns to stimulate me to go, and then it would hurt to go, I think later in my teen years I would have gas pains that would hurt to the point of tears would well up while I was in the bathroom. When I was 15 I had ankle surgery and I think that may have been when I noticed more D come along then at 17 I broke my foot. I know this may not be revalent to celiac disease but I used to sneeze only 3 times in a row, when I turned 18 I would sneeze 10 times. so life went on and after my daughter was born I was sick at times after meals I would be sick and no one else was. D was around a lot more the last few years nausea, heartburn, stomachburn, and itchy blistery rash once or twice a year, increased I never went to the doctor until my sister told me about her syptoms and told me what she found out on the internet, so then I looked and everything came together like a puzzle. was tested last year and negative because I had started the diet. My daughter now has been exibiting signs of what I went threw as a child it is like she is a mirror image of me at her age, so I know that she will eventually be tested to see.

donna

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To begin with, The Gluten Connection, is a wonderful book. Dr. Sinatra only wrote the foreword in the book, the rest was written by Shari Lieberman and there is a lot of very good information in the book. Please do check it out, I am not sorry I bought it.

First of all, I do not doubt that you have Celiac, or at least a leaky gut (which may cause GI issues even without the genes for Celiac) with your family history. You have said that you have not been tested because of cost, but I'm sure it's likely you would test positive. I would not clump you into the "gluten sensitive" but non-Celiac category. I wish I could help pay for your Dx! If I was done school, I would!

Thank you so much Doll for wishing you could help me. Now, I can afford the test and I do have full coverage insurance, but I have been gluten free for 7 yrs this month and there is no gluten in my system to test for. I am positive I am a celiac and there is not enough money in this world to make me do a challenge, I can't afford to be that sick. I wish there was a test they could do after a person has been gluten free. Thank you for your kind words.

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To begin with, The Gluten Connection, is a wonderful book. Dr. Sinatra only wrote the foreword in the book, the rest was written by Shari Lieberman and there is a lot of very good information in the book. Please do check it out, I am not sorry I bought it.

I'm glad to know the rest of the book has good information....thanks for letting me know. :)

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Guest Doll
I agree...and after reading this I cant say I want to run out and buy this book. I have no problem with people labeling themselves Celiac if thats what they choose to do.....but I think its irresponsible for a Dr. to make a statement like this in the foreword of a book which is meant to be informative.

Its obviously not Celiac Disease that his son has....and so now he has come up with "Aquired Celiac Disease"....which he is saying is another form of Celiac Disease in which you dont need a genetic predisposition to "aquire"??

I think its very misleading and unfortunately people will read this and not get accurate information about Celiac Disease.

I agree with you completely, thank you for your input. It is very irresponsible for a doctor to make statements that are misleading. This does nothing to help those with Celiac Disease *or* those with a gluten allergy *or* GI. It also causes public confusion.

Just as it is not beneficial to lump Type 1 and Type 2 diabetes together (they are completely 2 different diseases, with different causes, genetics, treatments, and research), I believe it is also harmful to do this with Celiac Disease and non-autoimmune GI (meaning GI that does not show up on any sort of standard medical test). I agree that these tests are not 100%, but most will pick up the vast majority of true Celiac cases. There is another factor at work here, and many people here who react to gluten are not Celiac. As Rachel pointed out, those people will never get healthy by simply cutting out gluten alone. That is why I am so adamant about people making sure to work with a doctor (MD and/or ND) to rule out other issues besides gluten.

From Lab Tests Online:

Anti-Endomysial Antibodies (EMA), IgA: Endomysium is the thin connective tissue layer that covers individual muscle fibers. Anti-Endomysial antibodies are developed in reaction to the ongoing damage to the intestinal lining. It has been found that tTg is the substance detected in this test. *Almost 100%* of patients with active celiac disease and 70% of patients with dermatitis herpetiformis (another gluten-sensitive condition that causes an itchy, burning, blistering rash on the skin) will have Anti-EMA, IgA antibodies. The test is more difficult to do and interpret properly than anti-tTg.

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Guest Doll
To begin with, The Gluten Connection, is a wonderful book. Dr. Sinatra only wrote the foreword in the book, the rest was written by Shari Lieberman and there is a lot of very good information in the book. Please do check it out, I am not sorry I bought it.

Thank you so much Doll for wishing you could help me. Now, I can afford the test and I do have full coverage insurance, but I have been gluten free for 7 yrs this month and there is no gluten in my system to test for. I am positive I am a celiac and there is not enough money in this world to make me do a challenge, I can't afford to be that sick. I wish there was a test they could do after a person has been gluten free. Thank you for your kind words.

Congrats on your 7th (gluten-free) anniversary! :)

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Hi Doll,

I really am glad that you have a positive attitude with life! You have it so rough. But, anyway, I see you have gotten some interesting responses. This is the first time in a while since I was able to use the computer. My kids have the majority of control now that it's summer! :lol: But, I did want to throw in something that I forgot about. I was diagnosed with mono in my senior year of high school. I was sick for almost a month! I remembered this by reading through this thread. Apparently doctors didn't see a connection, especially all of those years ago. I feel so ancient at 40! :lol: It's funny that the symptoms are similar. Oh, well, as you say, "That's Life!" :)

Vicki

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Guest Doll

Very interesting to see Mono mentioned more than once! Thanks again for keeping this thread going and sharing your stories! :)

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Hi, Doll:

I'm new to this site, but not so new to this disease. I'm 100% Irish, born and bred in Dublin, but have lived in the States for the last 15 years. Curiously, Ireland is only now beginning to twig that something's amiss. On a recent visit I noticed, for the first time, gluten-free products (albeit limited) and the occasional restaurant touting gluten-free food (not to be taken at face value -- you still have to ask "what's in it/what's it been cooked with/etc.).

Anyway, about ten years ago I had an emergency gastrectomy (called a "Billroth II") followed by a short bowel resection due to chronic ulcer disease. I did a lot of smoking and drinking back then, and was a bit of a worrier to boot. Essentially, I had major internal bleeding which precipitated these radical, and now relatively rare, steps. There was some respite between the first operation and the short bowel resection, where my body had to get used to essentially having no stomach. But after the intestinal surgery my recovery didn't go as planned.

A Billroth II can lead to multiple problems, and thankfully I managed to avoid some big ones like B12 absorption (I still get shots, just to be on the safe side), and a colostomy bag. But was saddled with dumping syndrome (still an inconvenience) and killer cramps, bloating, fatigue, mental fogginess and a host of other symptoms that I'm sure you and other readers are familiar with.

However, my underlying surgical condition obscured celiac disease for many years. To my Endo's credit, he did an intestinal biopsy to test for it a year after, but there'd been so much damage down there by way of the surgical knife that he couldn't come to a firm conclusion. I was so painfully thin, and needed to augment my weight, that I was told to err on the side of a good plate of pasta.

Seven years after the fact, I simply felt that my life was ruined. I had had a firm conviction that at one point in my life I'd been an intelligent, sharp-witted man, full of energy and drive. But by this point I was a wreck, in constant pain, and my life was tethered to the nearest restroom at all times. My doctor's shrugged their shoulders and said things like "well, you're lucky to be alive."

Then one day, the celiac disease thing came up in my mind, and I did a little research. At my wits end, I decided to go on a gluten-free diet for a month and see what would transpire. The improvement for me was almost instantaneous. Within a week, most of my chronic symptoms had abated. I went to my GI and told him. We did the test that week, and even during a live upper G.I. X-Ray the technician said "I've never seen such a textbook case of Celiac Disease."

The rest is history. I'm by no means immune to the odd flair up. But my abdominal surgery kicked the ball rolling. And, well, that's why I've posted here.

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Here is my trigger/diagnosis story

It started for me in 1987 when I was diagnosed with what was thought to be terminal abdominal cancer at age 16. I had 2 years of chemo and many radiation treatments on my abdominal area. They had to nearly kill me to keep me alive. The "D" started with the chemo/radiation and never went away. The DR said that my guts had been damaged by the treatment and might never recover. I had to do IV feedings for 2 years. The "D" did subside a bit and I went about my business. But it never went away completely.

By the time I was 24, it was back full force - 30 times a day. I lost 10 pounds and had to go back on the tube feeding for another year. The GI doctor I went to told me to go on a low-fat diet and patted me on the head and sent me away. The low-fat diet helped for a while.

Fast forward to December 2004. By this time I've got a husband, 2 kids and a mortgage, osteoporosis and anemia that won't go away. the big "D" comes back. The worst ever. 30 - 50 times a day. I started going from doctor to doctor trying to get someone to help me. Each one of them scratched their heads and wrote me a new prescription, but nothing helped.

By August of 2005, I was so malnourished I could hardly walk. I started passing out and knew that I was going to die. The last time I saw my Primary care DR, I told him that my funeral was planned and he could either admit me to the hospital, or come explain to my family why he let me die. I was in the hospital the next day. The doctor on call told me it was all in my head and put me on Prozac. I spent a week in there, and they tested me for everything under the sun and put me back on the tube feeding. It was only for a month this time.

Finally got hooked up with a GI doctor who does not have his head up his own butt (only everyone elses). He does an endoscopy and announces that I have Celiac disease. I am no longer dying, I am healthier than I have been in years. Now I know that it wasn't the radiation injury that caused my problems, it was Celiac. Cancer was my trigger.

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I can share my daughter's story which isn't TOO exciting, but we had a very positive diagnosis experience (she was diagnosed in a little under 2 months with biopsy and blood tests and has responded amazingly to gluten-free diet).

Things were all fine and good until about 3 years ago when she first started complaining about tummy aches, sinus troubles, sore throats, patches of eczema on her shins. Her superficial "symptoms" include some Irish heritage (my husband is not her bio father and although I don't know for sure, I think her bio father DEFINITELY was Irish based on features and coloring), extremely long eyelashes, and pale skin. She's always been rather hypersensitive emotionally but she is also extremely bright and considered "gifted" so I just lumped her sensitivity into that arena. She had somewhat persistent ear infections as toddler/preschooler but those cleared up with time (and after a lot of antibiotics). Her height/weight always fell within the normal range, however.

However, 3 years ago was about the time when a lot of changes were going on in her life. Her little brother was born, we moved to a new house, and my husband and I got married all within about 3 months of eachother. Going from an "only" child to a sibling was quite a shock for her. I certainly don't blame her little bro for triggering her Celiac disease, but I think it was certainly a factor (we don't know if bro is celiac or not, but he has a lot of food and environmental sensitivities in general as well as pretty persistent reflux as an infant). We attempted a blood test with him at our family doctor a few weeks ago and they couldn't get the needle in so we're going to wait until August when we have an appointment with an allergist at Children's Hospital in Denver to have those tests run on him.

Also, within the first year of living in our home we discovered a mold problem in the primary bathroom the kids use. We went through an extensive mold remediation process but I've often wondered if that was a possible trigger as well. Additionally, our household has struggled with MRSA staph infections---both my husband and son have had them and still get them from time to time (haven't pinpointed where they contracted them, but hubby first got his when he was doing some work in our attic--near the mold). My daughter has not had a staph infection, but at one point the whole family was on antibiotics trying to clear that out. I have scrubbed my house time and time again attempting to rid it of icky bacteria and such but it just keeps coming back.

I got my first taste of exactly how much emotional well-being is derived from being gluten-free because after a bad food weekend being glutened twice, not only was she having nightmares about gluten but had one of her infamous meltdowns when she makes you feel like the world is crumbling around her. I was finally able to remind her, though, that those feelings were because of what she ate, not because she is not a stable, wonderful person.

Anyway, not a very helpful "trigger" story, but it's always interesting to hear the "links" between these types of things, even when you think something is unrelated to Celiac.

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