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Who Knows What Their Genes Are?


Rachel--24

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Rachel--24 Collaborator

Hi,

This has come up in a recent discussion and its also something that I've been wondering about for quite some time. I had the gene test (Enterolab) last year and my genes are gluten intolerance genes DQ1 and DQ3. I do not have a Celiac gene.

Enterolab is the only lab testing for the intolerance genes as well as the Celiac genes. Everyone that I've ever seen post their results has one of these combinations...2 Celiac genes, 2 intolerance genes or one of each (an intolerance gene and a Celiac gene).

The report always states that having 2 genes (either Celiac or intolerance) can worsen the sensitivity to gluten and the reactions may be more severe.

What I am curious about is this...EVERY person seems to have 2 genes. So if EVERY person has 2 genes....what exactly are they saying?? The entire population is susceptible to either Celiac or gluten intolerance?? <_<

So basically anyone having symptoms and wanting to find out if its because of gluten will find that they have Celiac or intolerance genes if they do an Enterolab gene test. What answer do we really get from that...if the whole population has these genetics?? :unsure:

I wanna know if ANYONE has ever found that they do *not* carry 2 genes related to gluten intolerance when they get tested.

This is mainly for people who've used Enterolab because no other lab is currently testing for intolerance genes along with the Celiac genes.

Thanks. :)

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AndreaB Contributor

Me and my daughter have one of each. Me dq 2 and dq 3, my daughter has two dq 3 but one is subtype 8.

Husband and oldest son have 2 celiac genes. Husband dq 2 and dq 3 subtype 8, son double dq 2.

Haven't had the baby gene tested yet.

My husband does not have an active sensitivity despite having 2 celiac genes. He is gluten free with the rest of us though.

I thought I'd read that over 90% of the population had at least one gene......but I can't find it right now. The question is what makes someone become active. Obviously stresses of some kind, but we don't know when the breaking point is (so to speak).

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jerseyangel Proficient

This is from Enterolab's site--

How common are the gluten sensitivity and celiac genes?

DQ2 is present in 31% of the general American population. DQ8 (without DQ2) is present in another 12%. Thus, the main celiac genes are present in 43% of Americans. Include DQ1 (without DQ2 or DQ8), which is present in another 38%, yields the fact that at least 81% of America is genetically predisposed to gluten sensitivity. (Of those with at least one DQ1 allele, 46% have DQ1,7, 42% have DQ1,1, 11% have DQ1,4, and 1% have DQ1,9.) Of the remaining 19%, most have DQ7,7 (an allele almost identical in structure to DQ2,2, the most celiac-predisposing of genetic combinations) which in our laboratory experience is associated with strikingly high antigliadin antibody titers in many such people. Thus, it is really only those with DQ4,4 that have never been shown to have a genetic predisposition to gluten sensitivity, and this gene combination is very rare in America (but not necessarily as rare in Sub-Saharan Africa or Asia where the majority of the inhabitants are not only racially different from Caucasians, but they rarely eat gluten-containing grains, and hence, gluten-induced disease is rare). Thus, based on these data, almost all Americans, especially those descending from Europe (including Mexico and other Latin states because of the Spanish influence), the Middle East, the Near East (including India), and Russia, are genetically predisposed to gluten sensitivity. (That is why we are here doing what we do!) But be aware that if a person of any race has a gluten sensitive gene, and eats gluten, they can become gluten sensitive.

The gene test is used more to rule out Celiac--it can't diagnose or even tell if someone has or will get Celiac or be gluten intolerant. It's useful for families of Celiacs to determine which members need ongoing testing, and for those who have gone on a gluten free diet, or have inconclusive blood test/biopsy.

My results are in my signature--I did the test for two reasons. The first was to know which genes I may have passed on to my sons, and the second was so I had more information that might possibly spur more members of my family to get tested.

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CarlaB Enthusiast

I have 2 DQ1's. I found this chart at this website: Open Original Shared Link It appears that there are so many genes connected with gluten that it may contribute to why most of us have two. Also, most of us who are genetically tested already are quite sure we have a gluten problem. I wonder what a test of the general population would show.

" GLUTEN & OTHER FOOD INTOLERANCES

--------------------------------------------------------------------------------

There is growing public awareness of food intolerances, and allergies in general. More and more people are discovering that they are adversely affected by foods of various kinds. Food manufacturers are starting to provide low-allergy foods, and gradually friends and families of those affected are becoming more understanding.

But the scope of symptoms and disorders that can be caused by food intolerances is still largely misunderstood, so many people remain undiagnosed and suffer unnecessarily. This page is intended to give you a overview of some of the new knowledge and to enable you to have a better idea whether you or someone you know might be affected.

There are a number of terms used to describe adverse reactions to foods - allergy, intolerance, addiction (as we are often addicted to foods we react badly to), sensitivity. For the purposes of this article, any of these can be taken as terms to describe anywhere on the whole spectrum of reactions.

Although there are many foods (and other substances) that we can be sensitive too, gluten is possibly the most common and the most under-diagnosed. Many people feel that it is also one possible cause of other sensitivities. So for this article, we'll be focusing mostly on gluten, though most of what is discussed is applicable to other foods as well.

Covered on this page:

What are the different types of sensitivities?

Why does gluten cause so many problems?

How common is gluten intolerance?

What symptoms indicate gluten intolerance?

How can I get gluten intolerance diagnosed?

What should I do next?

I already know I need to be gluten free - take me straight to the page on how to do it!

--------------------------------------------------------------------------------

WHAT ARE THE DIFFERENT TYPES OF SENSITIVITIES?

There are at least three main types of antibodies associated with food sensitivities - IgE, IgA, IgG. Ig stands for Immunoglobulin, and these are proteins produced by the body to deal with foreign pathogens. They are specific to the pathogen. So what we're talking about here is when an antibody is produced to something that should be benign, like a food. To make it easier to see which is which at a glance, I'm going to give them "nicknames".

IgE reactions.

Associated with the "immediate" allergies, caused by a release of histamine. These aren't usually life-threatening, but sometimes cause anaphylaxis, which can be fatal if not promptly treated. Some examples of reactions are:

Hayfever, as a reaction to spring pollen or dust

Hives, as a reaction to eating tomatoes or other foods

Eczema and dermatitis, as a food or contact reaction

Anaphylaxis, as a reaction to peanuts or bee stings

IgE allergies are well covered by traditional allergists, so we won't go into them in any depth here. Let's call these ones "Evergreen", in honour of the green grass of spring, a time when many people get hayfever.

IgA reactions.

IgA allergies to egg, yeast, soy, milk, or gluten have been identified, though gluten has been the most studied. IgA is associated with the gut, and IgA allergies can cause gut damage. In the case of gluten (and possibly also casein) the IgA causes intestinal permeability. (More on this below.) So we'll call these ones "Attackers". IgA allergies don't seem to "go away" and appear to be genetically linked.

IgA (Attacker) reactions have a high correlation with some specific genes in the HLA range of genes. This is still being studied, but the following possible correlations have been identified so far:

Gene: Associated with:

HLA-B8 Celiac disease

HLA-DQ1 Gluten sensitivity

HLA-DQ2 Celiac disease

HLA-DQ3 Gluten sensitivity

HLA-DQ5 Gluten sensitivity

HLA-DQ6 Gluten sensitivity

HLA-DQ7 Celiac disease

HLA-DQ8 Celiac disease

HLA-DR3 Celiac disease

If you have one of these genes, there is a high likelihood that that gene will have been "expressed", and you will have functional gluten intolerance. "

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dlp252 Apprentice

Hum, I have DQ7 and 8, which according to what Carla just posted are both Celiac genes...or am I understanding that wrong. Hum, I'll have to go back and read my Enterolab explanations.

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CarlaB Enthusiast
Hum, I have DQ7 and 8, which according to what Carla just posted are both Celiac genes...or am I understanding that wrong. Hum, I'll have to go back and read my Enterolab explanations.

I don't know .... I don't know where the website got the info. I just looked back at what I posted ... strange it put so much on there! I didn't highlight and cut nearly that much info!!!

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Nancym Enthusiast

Dr. Fine states that there's only one genetic combination that doesn't seem susceptible to gluten intolerance and that is double DQ4. Its only found in asia and I think parts of africa and only where the population hasn't intermarried with caucasians, so it'd be pretty rare in lots of Europe and America. Where there isn't double DQ4 then there's about a 30% chance you'll end up with either gluten sensitivity or celiac.

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AndreaB Contributor

Donna,

When we had testing done they referred to subtype 7 as gluten sensitive.

So what is the difference between the dq and the subtype. Is subtype important aside from subtype 8? Isn't that the same as dq8?

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dlp252 Apprentice
Donna,

When we had testing done they referred to subtype 7 as gluten sensitive.

So what is the difference between the dq and the subtype. Is subtype important aside from subtype 8? Isn't that the same as dq8?

HA, this is what I never understood. I just took a brief look at my Enterolab report, and couldn't really find specifically about the 7...but for some reason I was thinking it was gluten sensitive. Not long after I was first diagnosed, some nice person on this board interpreted the subtypes for me...that's why I had to put it in my signature so I wouldn't forget, lol.

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CarlaB Enthusiast
Dr. Fine states that there's only one genetic combination that doesn't seem susceptible to gluten intolerance and that is double DQ4. Its only found in asia and I think parts of africa and only where the population hasn't intermarried with caucasians, so it'd be pretty rare in lots of Europe and America. Where there isn't double DQ4 then there's about a 30% chance you'll end up with either gluten sensitivity or celiac.

So wouldn't this give you 100% chance of having double gluten sensitive or celiac genes if you're not asian?

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chrissy Collaborator

in a nutshell, dr. fine seems to think that almost the entire world is genetically susceptible to gluten intolerance??? i have a hard time buying that one. it seems like alot of people are spending alot of money to get an answer they can almost count on 100% if they do enterolab tests. why bother testing?

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CarlaB Enthusiast
in a nutshell, dr. fine seems to think that almost the entire world is genetically susceptible to gluten intolerance??? i have a hard time buying that one. it seems like alot of people are spending alot of money to get an answer they can almost count on 100% if they do enterolab tests. why bother testing?

The question would be, why bother genetically testing? They do have people come out negative on their sensitivity tests ... one of my daughters did.

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rez Apprentice

I wish Dr. Fine would publish his studies too!!!!!!!!. I used him for my son and I'm beginning to think it's a bunch of hooey!!!!! If they keep telling people, we're publishing next year...oh, next year....next year....so on and so forth, they will lose all credibility and go out of business. It seems to me like they're telling people what they want to hear as well. Dr. Green's book refers to the stool test as "lay information" and he says that this person is diagnosing way too many people who may not be. How did he set the numbers for his tests, and there is a big gray area. I'm sure that people who test really high probably are sensitive, but a lot of people get wishy washy numbers. Let's be serious, who wouldn't feel better cutting out all that refined crap and going back to fresh foods. Again, we did Enterolab, but I still would feel better if I had the blood test or biopsy. I'm still angry that my doctors screwed up!! They did the test for a gluten allergy!!!! By this time and doctor three we tried the diet ourselves and it worked, much to our suprise! I told my 8 year old if he ever doubts it he can go back on gluten and get tested. He said "no way"!!!! I reassured him that he knows his body and his body's telling him he feels better. I asked him what his body said when he was eating gluten. He said his body said "I hate you!". Pretty powerful. If a kids willing to give up all gluten, something must be working.

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nikki-uk Enthusiast

Donna, according to this from enterolab DQ7 has the highest predisposition to celiac disease :o

So why do people only talk about DQ2 + 8 :blink:

Of the remaining 19%, most have DQ7,7 (an allele almost identical in structure to DQ2,2, the most celiac-predisposing of genetic combinations) which in our laboratory experience is associated with strikingly high antigliadin antibody titers in many such people.

My hubby is biopsy proven coeliac and my son.

Does this mean that they both MUST have DQ2 or 8 ?

I have been thinking of getting my other 2 sons gene tested (although as we are in the UK we can't use Enterolab) BUT as far as I can make out the lab I was going to use is only looking for DQ2 or 8.

Open Original Shared Link virtually says if you haven't got either of them ,then you don't have it - but NOT according to what Carla posted? :blink:

If you have a double copy of a known C.D gene does that mean celiac disease is more easily triggered ?

..and if it is triggered does that mean you get it more severe?

What about Gluten Sensitivity? - is that triggered by stress etc the same as C.D ?

Can the effects of gluten sensitivity be as insidious as C.D (e.g No obvious bowel problems but having other health problems?)

I'd be fascinated to know what hubby's genes are.

Just before his dx he clearly had neuropathy and what I thought was Ataxia.

Does that mean he has DQ1 (associated with the neurological effects of celiac disease)?

Does DQ1 only cause problems when coupled with a C.D gene or a Gluten Sensitivity gene?

As my hubby is an oddity in that he had negative bloods (tTg and EMA) but biopsy proven villous atrophy - I wouldn't be suprised if he had neither DQ2 or 8!!

Can you actually have villous atrophy without the C.D genes? :blink:

And to return to Rachels original question -does anyone just have one of these genes (either C..D or G.S) and would just one cause problems?

OMG - what an inquiring mind I have!! :lol:

There are clearly not enough :blink: confused/scratching head emoticons!!

...and I've asked way too many questions!! :lol:

Any theories welcome :D

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CarlaB Enthusiast

Nikki, I remember chatting with someone on this board, but don't remember who it was, and he/she had two DQ1 genes and a positive biopsy.

I definately have gluten related issues and have 2 DQ1. I don't think gluten intolerance is my only problem, I actually think it's part of another problem that we have yet to find. I've gotten somewhat better gluten-free, but not as good as I should be. However, gluten will make me sick(er) for about 8 days.

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dlp252 Apprentice

Oh my head is spinning, lol. :blink::lol:

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nikki-uk Enthusiast
Nikki, I remember chatting with someone on this board, but don't remember who it was, and he/she had two DQ1 genes and a positive biopsy.

Aha!! I knew it could be possible...the plot thickens.....

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Jestgar Rising Star

Small science input.

The HLA nomenclature is crazy. I've given up trying to understand it. Open Original Shared Link

I have seen nothing that shows that ONLY your HLA designation is sufficient to make you susceptible to celiac disease.

There are studies ongoing looking at the TLRs, more specifically TLR7,8 and 9 and their roles in initiating autoimmune diseases.

Human beings are very complex; it ususally takes more than one thing to make them not work.

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AndreaB Contributor

Seems to me that I had read that Dr. Fine set his limits where he did (maybe in part) due to favorable responses from individuals who removed gluten from their diet.

My whole family that was positive tested between 10-14 which is low. My oldest son who was at 10.5 had mild malabsorption and is the one with double dq2. I assume at some point it would have been bad enough for him to be sick and diagnosed through the regular route. I am glad he doesn't have to get to that point. I had sporadic symptoms in the past and my doctor was willing to test me, but I had been gluten very lite for 1 1/2 months at that time. No one had an autoimmune response which I'm also thankful for.

Something I found curious about my daughter and soy is that she tested at a 9 through enterolab after being soy free for 3 months (except for soy lecithin) and tested very high (clear to the end of the bar) on her IgG testing 4 months later. I would have thought she would have tested higher through enterolab. I would assume that would mean she's not forever intolerant but we won't go back to it.

I will also be curious as to whether he publishes in the next year or not.

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rez Apprentice

Where did you get the info that Double DQ2 poses the greatest risk to celiac. That's what my son is. Thanks

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AndreaB Contributor

Here's an article that is one the main site somewhere.....

Understanding the Genetics of Gluten Sensitivity by Dr. Scot Lewey

This article appeared in the Summer 2006 edition of Celiac.com's Scott-Free Newsletter.

Celiac.com 08/31/2006 - All of us have patterns of proteins on the surface of our white blood cells. These proteins are known as human leukocyte antigens (HLA), one of which is DQ. Celiac disease and non-celiac gluten sensitivity (NCGS), and several autoimmune conditions occur more frequently with certain HLA DQ types. DQ gene testing is performed by analyzing cells from a blood sample or from a Q-tip swab of the mouth. HLA types have a naming system that can be confusing even to scientists and physicians but here is my explanation of the testing, the results, and what they may mean to you and your family.

Each of us has two copies of HLA DQ. Because there are 9 serotypes of DQ we are all DQx/DQx where x is a number between 1 & 9. For example, I am DQ2/DQ7. I received the DQ2 from one of my parents and the DQ7 from the other. Because we get one DQ type from each of our parents and give one to each of our children it is easy to to see how the DQ genes pass through a family. This is important because two DQ types, DQ2 and DQ8, are estimated to be present in over 98% of all people who have celiac disease, the most severe form of gluten sensitivity.

Rarely, true celiac disease or dermatitis herpetiformis, the skin disease equivalent of celiac, have been reported to occur in people who do not have DQ2 and/or DQ8. However, according to unpublished data from Dr. Ken Fine of Enterolab, the other six types, except DQ4, are associated with risk for elevated stool antibodies to gliadin, the toxic fraction of gluten, and/or tissue transglutaminase (tTG) an enzyme. Both of these antibodies are usually elevated in the blood of individuals with celiac disease though they may be normal in the blood of individuals who are gluten sensitive and have a normal small intestine biopsy but respond favorably to a gluten-free diet.

Fine has publicly reported that elevated stool antibodies to gliadin and/or tTG have been detected in all of the untreated celiacs tested in his lab and 60% of non-celiacs who have symptoms consistent with gluten sensitivity but in none of the controls tested including cow manure. Follow up surveys of those individuals with elevated stool antibodies who initiated a gluten-free diet compared with those with elevated antibodies who did not reportedly showed significantly improved quality of life and improved symptoms in the gluten-free group.

He also reported DQ2 and DQ8 positive individuals have had, as a rule, the highest elevations of stool gliadin antibody followed by those who are DQ7 positive. Only those who are doubly positive for DQ4 have not been found to have significantly elevated antibodies to indicated gluten sensitivity. This is consistent with the differences in prevalence rates of celiac disease seen in various parts of the world since DQ4 is not generally found in Caucasians of Northern European ancestry where celiac incidence is highest but in those from Asia or Southern Africa where there is a very low incidence of celiac disease and gluten intolerance.

DQ2 & DQ8, the two major types present in 90-99% of people who have celiac disease, are present in approximately 35-45% of people in the U.S., especially those of Caucasian race of Northern European ancestry, with highest risk of celiac disease but the prevalence in U.S. of celiac disease is 1%. Though a prevalence of 1 in 100 is very common and much higher than had been believed for years, only a fraction of the genetically at risk are confirmed to have celiac disease by abnormal blood tests and small intestine biopsies. However, the number of people who report a positive response to gluten-free diet is much higher.

The stool antibody tests results would support this and the concept of a spectrum of gluten sensitivity that is much broader and in need of better diagnostic definitions. I am an example of someone who is DQ2/DQ7 who has normal blood tests for celiac disease but abnormal stool antibody tests and symptoms that responded to gluten-free diet. The strict criteria for diagnosing celiac disease, which is abnormal blood tests and a characteristic small intestine biopsy showing classic damage from gluten, is much narrower than what is being seen clinically.

It is becoming obvious to many of us who have personal and professional medical experience with gluten intolerance and celiac disease that the problem of gluten sensitivity is much greater and extends beyond the high risk celiac genes DQ2 and DQ8. Traditionally it is reported and believed by many that if you are DQ2 and DQ8 negative you are unlikely to have celiac disease or ever develop it, though this cannot be said with 100% certainty especially since there are documented cases of celiac disease and the skin equivalent of celiac disease, known as dermatitis herpetiformis (DH) in individuals who are DQ2 and DQ8 negative.

Therefore, knowing your DQ specific serotype pattern may be helpful for several reasons. For example, if you have more than one copy of DQ2 or DQ8, you carry two of the major genes. For example, if you are DQ2/DQ2, DQ2/DQ8, or DQ8/DQ8, a term Scott Adams of www.celiac.com has dubbed a “super celiac” you may be at much higher risk for celiac disease and have more severe gluten sensitivity. Certainly if you are DQ2 and/or DQ8 positive you are at increased risk for celiac disease. After a single copy of DQ2 or DQ8, it appears that DQ7/DQ7 might be next highest risk. Dr. Fine has also noted some other associations of the DQ patterns with microscopic or collagenous colitis, neurologic manifestations of gluten sensitivity and dermatitis herpetiformis, which has been one of the gluten sensitive conditions noted to be, at times, occurring in DQ2, DQ8 negative individuals.

Why some people get celiac Disease or become gluten sensitive is not well understood but certain factors are believed to include onset of puberty, pregnancy, stress, trauma or injury, surgery, viral or bacterial infections including those of the gut, medication induced gut injury or toxicity e.g. non-steroidal anti-inflammatory medications such as aspirin, ibuprofen, etc., immune suppression or autoimmune diseases especially since several of those factors are associated with onset or unmasking of gluten sensitivity in someone who is at risk or not manifesting any recognizable symptoms. There is also well known group of individuals who are termed “latent” celiacs. They are at high risk because they have close relatives who have celiac disease with whom they share one or more of the celiac genes DQ2 and/or DQ8 though they usually have few or no symptoms but sometimes have abnormal blood tests and/or biopsies indicating possible or definite celiac disease. Others have negative blood tests and normal biopsies but symptoms that respond to a gluten-free diet.

The severity of the sensitivity to gluten appears to be related to the DQ type, family history (highest risk is in the non affected identical twin of a celiac), pre-existing intestinal injury, degree of exposure to gluten (how frequent and large a gluten load an individual is exposed to), and immune status. Once initiated, gluten sensitivity tends to be life long. True celiac disease requires life-long complete gluten avoidance to reduce the increased risk of serious complications of undiagnosed and untreated celiac such as severe malabsorption, cancers, especially of the GI tract and lymphoma, other autoimmune diseases and premature death due to these complications.

Again, DQ testing can be done with cells from blood or by a swab of the inside of the mouth but not all labs test for or report the full DQ typing but only the presence or absence of DQ2 and DQ8. The lab that performs DQ testing is usually determined by an individual insurance company on the basis of contracts with specific commercial labs. However, if your insurance contracts with Quest Labs or the Laboratory at Bonfils (Denver, CO) full DQ can be done if ordered and authorized by the insurance company.

For those willing to pay out of pocket, Bonfils performs full DQ testing for Enterolab (www.enterolab.com) on a sample obtained by a Q tip swab of the mouth. Since it is painless and non-invasive it is well tolerated especially by young children. Also because the testing can be ordered without a physician and the sample obtained in their home using a kit obtained from Enterolab it is convenient. The kit is returned by overnight delivery by to Enterolab who forwards the test onto Bonfils. The cost is $149 for the genetic testing alone and has to be paid for in advance by credit card or money order and is generally not reimbursed by insurance.

Enterolab also provides the stool testing for gliadin and tissue transglutaminase antibodies to determine if gluten sensitivity is evident. The gliadin antibody alone is $99 or the full panel includes genetic typing, stool testing for gluten and cow’s milk protein antibodies, and a test for evidence of malabsorption is $349.

Again, the advantages of full DQ testing is determining if someone has more than one copy of DQ2 or DQ8 or carry both and therefore have a higher risk for celiac disease or more severe gluten intolerance. If you are DQ2 or DQ8 negative then your risk of celiac disease is low, though not non-existent. If you are not DQ4/DQ4 then you do have risk for gluten sensitivity. If you determine all DQ types within enough family members you can piece together a very accurate history of the origin of celiac and gluten sensitivity within a family and make some very accurate predictions of risk to other family members.

Though the lay public and many clinicians are finding the genetic tests helpful, many, including most physicians, do not understand the genetics of gluten sensitivity. We are awaiting Dr. Fine’s published data on the significance of stool antibody tests and their association to the other DQ types as his lab is the only lab offering the stool antibody tests in the U.S. Other celiac researchers in U.S. have failed to reproduce his assay but scattered reports in the literature are appearing including a recent article in the British Medical Journal indicating stool antibody testing is feasible, non-invasive, and using their protocol, highly specific but not sensitive for celiac disease in children. (Editor’s note: When present, these antibodies indicate celiac disease. However, they are not present in many cases of celiac disease.)

In the meantime, many patients are faced with the uncertainty and added cost of full DQ testing and stool testing due to the failure of traditional blood tests, small bowel biopsies, and the presence or absence of DQ2 and DQ8 to diagnose or exclude gluten sensitivity. Physicians unfamiliar with this testing are increasingly presented with the results and confused or skeptical pending published reports. The medical community continues to lack a consensus regarding the definitions of non-celiac gluten sensitivity and what tests justify recommendations for gluten-free diet. It is clear that gluten sensitivity, by any criteria, is much more common than ever thought and a hidden epidemic exists.

Dr. Scot Lewey is a physician who is specialty trained and board certified in the field of gastroenterology (diseases of the digestive system) who practices his specialty in Colorado. He is the physician advisor to the local celiac Sprue support group and is a published author and researcher who is developing a web based educational program for people suffering from food intolerances, www.thefooddoc.com

Article Source: Spammers Use This To Link To Spam.com

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Rachel--24 Collaborator
in a nutshell, dr. fine seems to think that almost the entire world is genetically susceptible to gluten intolerance??? i have a hard time buying that one. it seems like alot of people are spending alot of money to get an answer they can almost count on 100% if they do enterolab tests. why bother testing?

Exactly...why bother testing unless you wanna know if you carry a Celiac gene to either back up positive bloodwork or to make a Celiac diagnosis?? What good does it do for us to know if we have intolerance genes if EVERYONE has them??? :unsure:

I'm already quite sure that I'm not Asian.....couldn't they have just said "you are guaranteed Celiac genes or intolerance genes as long as you are not Asian". That would have saved me some money and I'd still have the same answer.

Since Dr. Fine has *still* not published anything (how many years has he been putting this off?) he is beginning to lose credibility in my eyes. <_<

I wonder what a test of the general population would show.

Carla,

A test of the general population would just show that pretty much *everyone* carries a set of genes that predisposes to gluten intolerance...according to Dr. Fine.

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Rachel--24 Collaborator
My whole family that was positive tested between 10-14 which is low. My oldest son who was at 10.5 had mild malabsorption and is the one with double dq2.

Andrea,

How do we know that any malabsorption that may show up is even related to gluten though? Take me for example...malabsorption score of 912 (a very high score), positive IgA, positive tTG, 2 intolerance genes and then it turns out my malabsorption has nothing to do with gluten. :huh: So what do all of these results mean?? How can we know for sure if there is nothing concrete about Enterolab?? These tests will never be accepted by doctors if Dr. Fine doesnt publish his findings.

Nikki, I remember chatting with someone on this board, but don't remember who it was, and he/she had two DQ1 genes and a positive biopsy.

Carla,

I'm only aware of one poster without celiac genes and a positive biopsy. Maybe it is the same person?? I think her name was Kelliac. She had 2 DQ1's.

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CarlaB Enthusiast
Carla,

I'm only aware of one poster without celiac genes and a positive biopsy. Maybe it is the same person?? I think her name was Kelliac. She had 2 DQ1's.

I think that was her.

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chrissy Collaborator

i recently read an article about malabsorption that said there are numerous causes. it also stated that it is important to know the cause because different causes are treated differently.

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    • trents
      And the fact is, no two celiacs will necessarily respond the same to gluten exposure. Some are "silent" celiacs and don't experience obvious symptoms. But that doesn't mean no harm is being done to their gut. It just means it is subclinical. 
    • AlyO
      Thank you, Trents.  I appreciate your helpful and friendly reply. It seems more likely to be a bug.  It has been a pretty severe bought. I feel that I don’t have enough experience to know what signs my little one shows after exposure to gluten. 
    • trents
      Hannah24, be aware that if you are on a gluten free diet, you will invalidate any further testing for celiac disease (except genetics) and would need to go back to eating significant amounts of gluten for weeks or months to qualify for valid testing.
    • knitty kitty
      Hello, @Hannah24 Have you had a DNA test done?  Celiac Disease is genetic.  You must have at least one gene to develop celiac disease.  You don't have to be consuming gluten for a genetic test.   Anemia, diabetes and thiamine deficiency can cause false negatives.  Some lucky people are seronegative, but still have celiac disease.  Peripheral neuropathy, tingling in hands and feet are symptoms of vitamin deficiencies.  Vitamin C, Thiamine B1, Niacin B3, Pyridoxine B6, and Cobalamine B12 can each cause peripheral neuropathy.  These same vitamins are needed to produce blood cells.  Most undiagnosed Celiacs suffer from nutritional deficiencies. The DNA test would be helpful.
    • trents
      We do hear of cases of remission but they generally eventually revert back. I wouldn't push your luck.
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