Enterolab Report - Help With Interpretation

[Amy Hull Brown]

Hi. I'm new to this forum. I just received my Enterolab Report and need help with the interpretation. I will summarize assuming that many of you already know the report format.

(1) Fecal Antigliadin IgA 44 (normal <10). Elevated, it is recommended that you follow a strict and permanent gluten-free diet.

(2) Fecal Antitissue Transglutaminase IgA 21 (normal <10). You have an automimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

(3) Quantitative Microscopic Fecal Fat Score <300 (normal <300). There is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.

(4) Fecal Anti-Casein IgA 13 (normal < 13). Indicative of immune reaction, and hence immunologic "sensitivity" to that food. It is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

(5) HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue, HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity. Two copies means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

So, it doesn't sound like I have celiac, but rather gluten sensitivity. What's the difference? My sister does have celiac. Would my condition turn into celiac if left untreated? Because of my sons, we switched to a Gluten-free Casein-free diet over three months ago, although I have infractions when my and husband and I go out to dinner. Can I still have infractions if I take digestive enzymes?

Thanks for your help!

Amy

[Mother of Jibril]

What are the specific genes you have?

I have two thoughts about the difference between you and your sister:

1) Maybe your sister was diagnosed with celiac, but doesn't have the "celiac" genes... it can happen! Do you know what your sister's diagnosis was based on?

2) Each parent can only pass on one gene... it's a 50/50 toss-up. What if you inherited exactly the opposite genes compared to your sister?

[ShayFL]

I had 2 gluten sensitivity genes through Enterolab. No Celiac genes. But POSITIVE response to a gluten-free diet.

[Lisa]

.

So, it doesn't sound like I have celiac, but rather gluten sensitivity. What's the difference? My sister does have celiac. Would my condition turn into celiac if left untreated? Because of my sons, we switched to a Gluten-free Casein-free diet over three months ago, although I have infractions when my and husband and I go out to dinner. Can I still have infractions if I take digestive enzymes?

Thanks for your help!

Amy

Enterolabs cannot diagnose Celiac Disease. A Serologic Panel can test Celiac. Gluten intolerance is that, an intolerance. Celiac is an autoimmune response to gluten. Some people here think that a gluten sensitivity is the precursor to Celiac. I have seen no research to validate that concept. Research is young in this field.

If you do have Celiac and you have a family history, each "infraction" will cause damage to your body. If you are gluten sensitive, you may have symptoms as in Celiac Disease, but not the autoimmune response with Celiac Disease.

Digestive enzymes may be helpful, but it will not ward off the autoimmune response if you indeed have Celiac Disease.

[nora-n]

But which genes?

we have noticed that if one has DQ2,2 they fail to write that you still may have a celiac gene since 2,2 plus 7 makes up DQ2,5m the celiac gene. And, one can have half a celiac gene in the alpha chain.

If you have a positive blood test for ttg, you still can be officially celiac because of half the gene. And, there are officially diagnosed celiacs with DQ6 and DQ7 and DQ9.

[mftnchn]

Since you are primarily gluten free, it will be hard to further test celiac. I am afraid that you are not going to know whether it is celiac or gluten sensitivity unless you go back on a high amount of gluten for weeks to months--long enough to have significant intestinal damage that can be found on biopsy.

Its hard because there are not other ways to confirm a celiac diagnosis at this point.

[Amy Hull Brown]

The report shows:

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 2,3 (subtype 2,9)

What are the specific genes you have?

I have two thoughts about the difference between you and your sister:

1) Maybe your sister was diagnosed with celiac, but doesn't have the "celiac" genes... it can happen! Do you know what your sister's diagnosis was based on?

2) Each parent can only pass on one gene... it's a 50/50 toss-up. What if you inherited exactly the opposite genes compared to your sister?

[leadmeastray88]

The report shows:

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 2,3 (subtype 2,9)

I have the DQB*0202 gene too.

I had a dispute with Dr. Fine on this, as Kimball genetics states that the Celiac genes are DQ2 (encoded by alleles DQA1*0501 or *0505 plus DQB1*0201 or *0202) and DQ8 (encoded in part by DQB1*0302).

How can he possibly rule out that DQB*0202 isn't a Celiac gene when they don't test for the alpha part?

Dr. Fine seems to think that 0202 gene holders are at a small risk. Yet he does not distinguish this in his testing. It would be interesting to go through Kimball and see what they say about it.

I'm no expert in genetics, but this seems pretty clear cut to me.

Do you feel better gluten-free?

[Mother of Jibril]

Wikipedia has some good information about this...

Open Original Shared Link

There are two different beta types of DQ2: B*0201 and B*0202. The first one puts you at risk for celiac disease (and type I diabetes)... the second one does not. Tricky!

One important thing however, is that your version of DQ2 and the DQ9 gene still put you at risk of gluten intolerance and all kinds of related disorders (autoimmune, neurological, etc...). Check out the signature of ravenwoodglass. She's a double DQ9. So... if you feel better being off gluten, I would definitely stay off it!

[Amy Hull Brown]

Since going partially Gluten-free Casein-free, I've noticed a couple of subtle changes (less fatigue, my bloodshot eyes seemed whiter). I always considered myself fairly healthy, so I can't say I noticed anything extreme. However, since going totally Gluten-free Casein-free for the past 4 or 5 days, I've experienced something very different than ever before. The one major health puzzle I've never figured out in my life was that I always had chronic constipation. I would go no more frequently than once a week. Of course, the BMs would be extremely hard and large and could sometimes be very painful, especially as a kid. But, in the past several days, I have had very soft stools (almost like a diarrhea) once or twice a day. And, as I thought maybe it was related to a stomach bug, I haven't felt sick like you normally would if in fact it was a stomach bug. Also, over the past several weeks as I had gone more and more Gluten-free Casein-free, any time I ate gluten, my stomach/intestines would immediately start to act up with bloating, cramping, growling, etc, and I found myself taking a pepto bismol to get to sleep.

I have the DQB*0202 gene too.

I had a dispute with Dr. Fine on this, as Kimball genetics states that the Celiac genes are DQ2 (encoded by alleles DQA1*0501 or *0505 plus DQB1*0201 or *0202) and DQ8 (encoded in part by DQB1*0302).

How can he possibly rule out that DQB*0202 isn't a Celiac gene when they don't test for the alpha part?

Dr. Fine seems to think that 0202 gene holders are at a small risk. Yet he does not distinguish this in his testing. It would be interesting to go through Kimball and see what they say about it.

I'm no expert in genetics, but this seems pretty clear cut to me.

Do you feel better gluten-free?

[Amy Hull Brown]

Thanks for the link. I have to admit that a lot of this seems confusing, so I greatly appreciate all of your help! I still don't quite understand the difference between gluten sensitivity/intolerance and celiac. As a child, my parents and doctors always worried about my lack of growth. I'm 5'2" (my sister is also small) and weigh 90 lbs. My parents are not big, but we're still smaller than them. I also had another sister that died at the age of 5 (40 years ago) from "intestinal complications". My living sister was diagnosed celiac about twenty years ago (when she was 30), so the testing that she did back then was obviously not as scientific as we have today. My mother always suffered from migraine headaches during her periods and she as well as her mother and aunts all developed bloated stomachs that made them look pregnant even though the rest of their bodies was fairly slight. My father contracted polio as a child which I read is because the polio virus left the intestines through perforations, entered the bloodstream, and caused the paralysis. I'm actually going to ask each of them to do the Enterolab tests so I can find out more what's going on genetically.

Wikipedia has some good information about this...

Open Original Shared Link

There are two different beta types of DQ2: B*0201 and B*0202. The first one puts you at risk for celiac disease (and type I diabetes)... the second one does not. Tricky!

One important thing however, is that your version of DQ2 and the DQ9 gene still put you at risk of gluten intolerance and all kinds of related disorders (autoimmune, neurological, etc...). Check out the signature of ravenwoodglass. She's a double DQ9. So... if you feel better being off gluten, I would definitely stay off it!

[Mother of Jibril]

It is confusing... and sometimes a source of tension on this forum

If you have celiac disease, it means you have an autoimmune reaction to gluten that is destroying your intestines. Gluten intolerance is different... it can cause and be related to autoimmune disorders, but not always. For example, candida infections can cause food intolerances and a "leaky gut." To make it even more confusing, there are some other autoimmune disorders besides celiac that damage your intestines (like Chron's disease) and affect your body's ability to digest certain foods! Plus gluten and dairy are hard for a lot of people to digest... not just people who have celiac disease.

It certainly would be interesting to know the genetics of your other family members. I'm so sorry that you lost a sister at such a young age! It's totally possible that your whole family is suffering from gluten intolerance... some of them might even have celiac.

[fedora]

Hi.I researched this for weeks, so

the Dq0202 gene you have is Half of the total celiac gene DQ2.5.

The other gene you have is not the second half of the DQ2.5 gene.

so you dod not have the total DQ2.5 gene.

However, most celiacs have the genes DQ2.5 or DQ8, but in the celiacs without these genes the most common gene found is DQ0202 alone.

so there is some risk involved, althought not as high as the total gene DQ2.5.

In labs they studied the effects of the gene DQ0202 and gluten. It does react to gluten just not usually at the threshold that causes celiac damage to the intestional lining.

I have DQ0202 only without the second half. I do not cheat ever. I wont either.

did you have the blood work or biopsy done?

[Amy Hull Brown]

Thanks so much for responding!

No, I haven't done the bloodwork yet, but will, although I'm not confident that the results will be accurate since I have been mostly Gluten-free Casein-free for three months. No, I haven't done the biopsy because I'm a chicken and don't trust most doctors anyway.

I did have blood work done on my identical sons and will next do the Enterolab test on them. Their bloodwork came back as follows, although they were Gluten-free Casein-free for a couple of months before doing the bloodwork:

Deamidated Gliadin Abs, IgA - 1.2 (0.0 - 10.0)

Deamidated Gliadin Abs, IgG - 0.7 (0.0 - 10.0)

Transglutaminase (tTG) IgA - 1 (negative 0 - 3)

Transglutaminase (tTG) IgG - 9 HIGH (weak positive 6 - 9, positive >9)

Endomysial Antibody IgA - negative

Immunoglobulin A, Qn, Serum 132 (27 - 195)

Can anyone interpret their results?

Thanks... Amy

Hi.I researched this for weeks, so

the Dq0202 gene you have is Half of the total celiac gene DQ2.5.

The other gene you have is not the second half of the DQ2.5 gene.

so you dod not have the total DQ2.5 gene.

However, most celiacs have the genes DQ2.5 or DQ8, but in the celiacs without these genes the most common gene found is DQ0202 alone.

so there is some risk involved, althought not as high as the total gene DQ2.5.

In labs they studied the effects of the gene DQ0202 and gluten. It does react to gluten just not usually at the threshold that causes celiac damage to the intestional lining.

I have DQ0202 only without the second half. I do not cheat ever. I wont either.

did you have the blood work or biopsy done?

[coldnight]

I don't think blood work means anything if you have not eaten gluten in several months. I was told you had to eat quite a bit at least 6 weeks preceding the test.

[Amy Hull Brown]

I agree that bloodwork can lead to false negatives if you aren't currently consuming it, but if in fact you receive a positive score, it seems like that woud be reliable. Is that true? That's why I'm curious about my sons' scores given that the transglutaminase IgG actually came in high. Any other thoughts?

I don't think blood work means anything if you have not eaten gluten in several months. I was told you had to eat quite a bit at least 6 weeks preceding the test.

[Mother of Jibril]

Yes, that's my understanding too... you don't get false positives, just false negatives. Diagnosed celiacs are supposed to keep having these tests to make sure they're sticking to the gluten-free diet.

I would skip Enterolab (unless all you're planning to get is the genetic test). Has anyone suggested endoscopy? Since they're identical twins you might want to have them both tested.

[fedora]

Enterolab says they can test for gluten intolerance for up to a year after not eating gluten, but I would NOT trust that. Lots of people have tested after being off gluten of months, but I would worry about a false negative with that too.

Are your sons better on the diet. The genetic test can be valuable to determining their celiac risk factor.

I have twins too- a boy and girl

[Amy Hull Brown]

Yes, the boys are definitely better on the diet. They never exhibited GI issues, but their issues were always behavioral and neurological. They have been diagnosed ADHD and I'm having them tested for Autism as well (my guess is that they are high functioning ASD). Given the false negative issues, I found their high score for tTG IgG to be interesting although I can't seem to find anyone who can interpret whether that just means they have gluten sensitivity or if they are celiac.

Enterolab says they can test for gluten intolerance for up to a year after not eating gluten, but I would NOT trust that. Lots of people have tested after being off gluten of months, but I would worry about a false negative with that too.

Are your sons better on the diet. The genetic test can be valuable to determining their celiac risk factor.

I have twins too- a boy and girl

[nora-n]

If you search the literature and wikipedia, there are DQ2,2 celiacs out there but they are less in number than the DQ2,5 (=official celiac) gene.

Also, there are several other DQ2 types, even 0303 DQ2's.

One has to know the alpha chain and the DR type, then one can be typed to find out which kind.

The rapid lab tests do not allow for that.

There was aDQ8 celiac here, diagnosed a long time ago, with high antibodies and everything, and her test was negative at kimball and they sent it on to another lab after the person protested and they did find she was DQ8 after all.

I think the typing of the alpha chain is a good start.

Even just half a celiac gene, 05*, makes you celiac.

And, DQ can only explain half the risk.

TNF alpha and myo9b explain some more things, and wiki says the greatest risk is being in close blood relation to a celiac is the highest risk....

About the twins' blodd tests: the tests were not 0, that means something now that they are off gluten, and the IgG test was high, and that one is the one that stays high for up to a year. An enterolab test will just show the same thing, positive antibodies.

nora

[Amy Hull Brown]

Hi Nora: I get what you are saying, but I'm not quite sure how to read the test results. So, the test results show:

HLA-DQB1 Allele 1 0202

HLA-DQB1 Allele 2 0303

HLA-DQ 2,3 (subtype 2,9)

When you mention the DQ2,2 celiacs, which "2s" in the results match up with the "2s" that you are using. How do the DQB1's relate to the DQs? Is the subtype 2 related to the DQ2 and the subtype 9 related to the DQ3? And, when Enterolab mentions that I have two copies of a gluten sensitive gene - which one are they referring to?

I feel like such a Newbie!

If you search the literature and wikipedia, there are DQ2,2 celiacs out there but they are less in number than the DQ2,5 (=official celiac) gene.

Also, there are several other DQ2 types, even 0303 DQ2's.

One has to know the alpha chain and the DR type, then one can be typed to find out which kind.

The rapid lab tests do not allow for that.

There was aDQ8 celiac here, diagnosed a long time ago, with high antibodies and everything, and her test was negative at kimball and they sent it on to another lab after the person protested and they did find she was DQ8 after all.

I think the typing of the alpha chain is a good start.

Even just half a celiac gene, 05*, makes you celiac.

And, DQ can only explain half the risk.

TNF alpha and myo9b explain some more things, and wiki says the greatest risk is being in close blood relation to a celiac is the highest risk....

About the twins' blodd tests: the tests were not 0, that means something now that they are off gluten, and the IgG test was high, and that one is the one that stays high for up to a year. An enterolab test will just show the same thing, positive antibodies.

nora

[nora-n]

Hi, they keep changing the names and nomenclature of the celiac and HLA genes.....

You can grasp most of it by reading on HLA DR on wikipedia, where they also list the alpha and beta chains that are most common.

Often, in the literature on DQ genes, they just mention DQ2 and DR type. The meaning of the DR stuff you have to look up on this HLA DR page.

On the HLA DQ page and the specific DQ pages there is more wxplanation, but luckily they also mention that some are hard to type and that errors(mistyping ccurs and that the alpha chain is not necessarily the same for all....

The 2,2 and 2,5 thing are newish.

Open Original Shared Link here you see the list together with the most common alpha cchains.

DQ2,5 is 0501 in the alpha chain plus 0201 in the beta chain, but there are transforms of DQ2,5 formed by2,2 = 0202 plus the 05*alpsha chain in DQ7.....not on the chart, but in the text to the right.

Hypothetically: Now if you happen to have 05* inthe alpha chain of the other gene, the one with 0303 which usually is DQ9, then you actually are trans DQ2. Now we do not know your apha chain in the second gene. Still, there are many officilally diagnosed 2,2 celiacs, and some DQ9 celiacs in the literature. Most common are 02* and 03* in the alpha chain for DQ9 by 0303.

But HLA genes only can explain half of the risk for celiac....

And, if you have just half a gene, (also meaning just the alpha chain, for which enterolab does not test) you still are at a greater risk for celiac. One certainly cannot rule out celiac.

You do not have tow of the same gluten sensitive enes, but two different gluten sensitive genes. And, 2,2 is also a celiac gene, but with much less risk than the 2,5 variant.

If one has DQ7 too, (with2,2) this makes up DQ2,5 in trans even though it is just reported as 2,2 plus 7, two gluen sensitive genes.

nora