Enterolabs Results

[BigDogz]

For years I've suffered from what my doc (at that time) termed 'IBS'. The symptoms included intermittent diarrhea, constipation, abdominal cramps and gas. The past few years those symptoms grew worse, the diarrhea sometimes so bad that I could eat a salad at lunch and still ID certain vegetables when they showed up in the toilet just 4 or 5 hours later! - something that always amazed me since I'd learned a long, LONG time ago in high school that it should take food 36 hours to make it through the GI tract.

Anyways, last summer, things started getting REALLY bad - brain fog to the point I couldn't remember what I was saying long enough to finish a sentence, numbness in my hands and feet, mouth ulcers that wouldn't heal, dizziness & trouble walking, continuous headache, widely swinging moods, muscle twitching in my arms, legs and eyelids, bloating, constant hunger no matter how much I ate, nasty muscle cramps in my lower legs and feet, weight gain and the most profound fatigue I've ever experienced.

My (then) doctor was pretty dismissive and I really had to push to get testing of ANY kind but finally got him to order a CBC, TSH with thyroid antibodies (anti-TPO & anti-thyroglobulin) and B-12 and folate levels. The CBC was essentially OK - my monocytes were slightly elevated at 13% (norms 4-12%), which I understand is a sign of some sort of inflammation. The TSH was 1.26 (norms 0.3-5.0) and the antibodies were: anti-TPO <10 (norm <35), anti-thyroglobulin <20 (norms <41). My B-12 was 251 & the lab report said "many people can exhibit symptoms of deficiency at levels less than 450". Doc begrudgingly started B-12 injections and I did feel less fatigued but the other symptoms persisted...especially the constipation/diarrhea, bloating and seemingly uncontrollable weight gain. No matter how many calories I restricted myself to, I was STILL gaining weight.

I wasn't able to get anywhere with my doctor on further testing. He just wanted to call me depressed and shove anti-depressants down my throat. I went gluten-free on my own while I looked for another doctor and started to feel better within the first 2 weeks. I was gluten-free for 1 month before I found another doc that I was comfortable with and was open-minded enough to listen to me. She wanted me to go off the gluten-free diet for a 6-week gluten challenge at which time we'd do blood testing. Within 12 hours of restarting the gluten I had HORRIBLE diarrhea and cramping to the point that I literally spent hours on the toilet. I had 24 hours of diarrhea before the other symptoms started - severe headache, gnawing body aches, bloating, numbness in my feet and hands...I made it only 12 days before I called her back and told her I had to quit. In just those 12 days I'd gained 5.6 lbs!!! I just couldn't take it any longer. At that point she was prepared to diagnose me as Celiac on just the strength of my dietary response and go no further with testing.

I returned to the gluten-free diet and the symptoms began clearing within a week's time. A month into my renewed gluten-free my doubting Thomas streak took hold (dumba$$ that I am) and I opted to do testing through Enterolabs since I could stay gluten-free while doing it. I should have gone with doc's suggestion. I got my results a few days ago and my insistence on doing the testing has only proven to confuse myself!

According to Enterolabs:

Fecal Anti-gliadin IgA 4 Units

Fecal Anti-tissue Transglutaminase IgA 1 Units

Quantitative Microscopic Fecal Fat Score Less than 300 Units (normal)

Fecal Anti-casein (cow's milk) IgA 2 Units

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0603

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

In the written interpretation they say that the IgA and atT are within normal limits (WNL)...basically that I'm NOT Celiac. They also note that I have no malabsorption issues since the fecal fat is also WNL. If I don't have a malabsorption issue then why was my B-12 low?

Moving on...in the next paragraph of the interpretation they indicate that I carry 2 genes that predispose to gluten senstivity and note that having "two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe." But I thought the first two numbers meant I WASN'T having an immunologic response to gluten? Am I Celiac or aren't I?

Just what the heck do my genetic markers really mean? And what am I to make of the line labeled 'serologic equivalent'? How is it logical that my tests appear to be saying no Celiac when my body is most certainly responding like it is? I've been gluten-free again for nearly 2 months now and I feel SO much better, I'm no longer bloated, I've had diarrhea only once in that time (glutened?), I'm not constantly hungry any longer and I've even lost 7 pounds!!

ARRGGGHHH! I'm so frustrated that I don't understand what's going on!!

[ravenwoodglass]

"I went gluten-free on my own while I looked for another doctor and started to feel better within the first 2 weeks. I was gluten-free for 1 month before I found another doc that I was comfortable with and was open-minded enough to listen to me. She wanted me to go off the gluten-free diet for a 6-week gluten challenge at which time we'd do blood testing. Within 12 hours of restarting the gluten I had HORRIBLE diarrhea and cramping to the point that I literally spent hours on the toilet. I had 24 hours of diarrhea before the other symptoms started - severe headache, gnawing body aches, bloating, numbness in my feet and hands...I made it only 12 days before I called her back and told her I had to quit. In just those 12 days I'd gained 5.6 lbs!!! I just couldn't take it any longer. At that point she was prepared to diagnose me as Celiac on just the strength of my dietary response and go no further with testing. "

This was a wise doctor. I would go with her advice and diagnosis and run with it. Your body is letting you know that gluten for you is toxic and this doctor clearly recognizes it. Keep the doctor and lose the gluten.

[gfb1]

[snip]

I returned to the gluten-free diet and the symptoms began clearing within a week's time. A month into my renewed gluten-free my doubting Thomas streak took hold (dumba$$ that I am) and I opted to do testing through Enterolabs since I could stay gluten-free while doing it. I should have gone with doc's suggestion. I got my results a few days ago and my insistence on doing the testing has only proven to confuse myself!

According to Enterolabs:

Fecal Anti-gliadin IgA 4 Units

Fecal Anti-tissue Transglutaminase IgA 1 Units

Quantitative Microscopic Fecal Fat Score Less than 300 Units (normal)

Fecal Anti-casein (cow's milk) IgA 2 Units

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0603

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

In the written interpretation they say that the IgA and atT are within normal limits (WNL)...basically that I'm NOT Celiac. They also note that I have no malabsorption issues since the fecal fat is also WNL. If I don't have a malabsorption issue then why was my B-12 low?

Moving on...in the next paragraph of the interpretation they indicate that I carry 2 genes that predispose to gluten senstivity and note that having "two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe." But I thought the first two numbers meant I WASN'T having an immunologic response to gluten? Am I Celiac or aren't I?

Just what the heck do my genetic markers really mean? And what am I to make of the line labeled 'serologic equivalent'? How is it logical that my tests appear to be saying no Celiac when my body is most certainly responding like it is? I've been gluten-free again for nearly 2 months now and I feel SO much better, I'm no longer bloated, I've had diarrhea only once in that time (glutened?), I'm not constantly hungry any longer and I've even lost 7 pounds!!

ARRGGGHHH! I'm so frustrated that I don't understand what's going on!!

your frustration is understandable -- although it is REALLY GOOD that you are feeling better on a Gluten-free diet!

your test results are perfectly predictable. if you were on a Gluten-free diet, then you should be negative. even ravingdyedinthewoolgoldstandardbiopsyapproved-celiacs will test negative when on a Gluten-free diet. in fact, once Gluten-free, the blood tests for gliadin can be used as a marker for the success of your gluten-free diet. any postitives and you really weren't gluten-free!!!

btw -- i wouldn't be overly concerned about body weight gain/loss. your rapid weight gain was probably water-weight and your weight loss (7 lbs in 8 weeks) is roughly equivalent to the loss of all that water and a reduction of about 300 calories/day -- not unusual for someone on a new gluten-free-diet and avoiding fast/processed foods.

as for the genetic markers, i would ignore them.

[Foxfire62]

For years I've suffered from what my doc (at that time) termed 'IBS'. The symptoms included intermittent diarrhea, constipation, abdominal cramps and gas. The past few years those symptoms grew worse, the diarrhea sometimes so bad that I could eat a salad at lunch and still ID certain vegetables when they showed up in the toilet just 4 or 5 hours later! - something that always amazed me since I'd learned a long, LONG time ago in high school that it should take food 36 hours to make it through the GI tract.

Anyways, last summer, things started getting REALLY bad - brain fog to the point I couldn't remember what I was saying long enough to finish a sentence, numbness in my hands and feet, mouth ulcers that wouldn't heal, dizziness & trouble walking, continuous headache, widely swinging moods, muscle twitching in my arms, legs and eyelids, bloating, constant hunger no matter how much I ate, nasty muscle cramps in my lower legs and feet, weight gain and the most profound fatigue I've ever experienced.

My (then) doctor was pretty dismissive and I really had to push to get testing of ANY kind but finally got him to order a CBC, TSH with thyroid antibodies (anti-TPO & anti-thyroglobulin) and B-12 and folate levels. The CBC was essentially OK - my monocytes were slightly elevated at 13% (norms 4-12%), which I understand is a sign of some sort of inflammation. The TSH was 1.26 (norms 0.3-5.0) and the antibodies were: anti-TPO <10 (norm <35), anti-thyroglobulin <20 (norms <41). My B-12 was 251 & the lab report said "many people can exhibit symptoms of deficiency at levels less than 450". Doc begrudgingly started B-12 injections and I did feel less fatigued but the other symptoms persisted...especially the constipation/diarrhea, bloating and seemingly uncontrollable weight gain. No matter how many calories I restricted myself to, I was STILL gaining weight.

I wasn't able to get anywhere with my doctor on further testing. He just wanted to call me depressed and shove anti-depressants down my throat. I went gluten-free on my own while I looked for another doctor and started to feel better within the first 2 weeks. I was gluten-free for 1 month before I found another doc that I was comfortable with and was open-minded enough to listen to me. She wanted me to go off the gluten-free diet for a 6-week gluten challenge at which time we'd do blood testing. Within 12 hours of restarting the gluten I had HORRIBLE diarrhea and cramping to the point that I literally spent hours on the toilet. I had 24 hours of diarrhea before the other symptoms started - severe headache, gnawing body aches, bloating, numbness in my feet and hands...I made it only 12 days before I called her back and told her I had to quit. In just those 12 days I'd gained 5.6 lbs!!! I just couldn't take it any longer. At that point she was prepared to diagnose me as Celiac on just the strength of my dietary response and go no further with testing.

I returned to the gluten-free diet and the symptoms began clearing within a week's time. A month into my renewed gluten-free my doubting Thomas streak took hold (dumba$$ that I am) and I opted to do testing through Enterolabs since I could stay gluten-free while doing it. I should have gone with doc's suggestion. I got my results a few days ago and my insistence on doing the testing has only proven to confuse myself!

According to Enterolabs:

Fecal Anti-gliadin IgA 4 Units

Fecal Anti-tissue Transglutaminase IgA 1 Units

Quantitative Microscopic Fecal Fat Score Less than 300 Units (normal)

Fecal Anti-casein (cow's milk) IgA 2 Units

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0603

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

In the written interpretation they say that the IgA and atT are within normal limits (WNL)...basically that I'm NOT Celiac. They also note that I have no malabsorption issues since the fecal fat is also WNL. If I don't have a malabsorption issue then why was my B-12 low?

Moving on...in the next paragraph of the interpretation they indicate that I carry 2 genes that predispose to gluten senstivity and note that having "two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe." But I thought the first two numbers meant I WASN'T having an immunologic response to gluten? Am I Celiac or aren't I?

Just what the heck do my genetic markers really mean? And what am I to make of the line labeled 'serologic equivalent'? How is it logical that my tests appear to be saying no Celiac when my body is most certainly responding like it is? I've been gluten-free again for nearly 2 months now and I feel SO much better, I'm no longer bloated, I've had diarrhea only once in that time (glutened?), I'm not constantly hungry any longer and I've even lost 7 pounds!!

ARRGGGHHH! I'm so frustrated that I don't understand what's going on!!

I don't know what the genetic markers mean, but I can tell you that you probably had a negative response on your blood work because you were on a gluten-free diet. You really need to be on a gluten-free diet for awhile (2 weeks - 1 month) and then do blood work or get scoped and have a biopsy done. Only the biopsy is the sure-fire way to diagnosis, and to get a positive result there, you need to have villi damage that is caused by gluten. If you're healed because you've been on a gluten-free diet, they won't be able to heal.

So, the way I see it, either you go on a gluten diet and then get tested, or if it's too painful for you, assure yourself that you are at the very least gluten-intolerant and stay away from gluten...forever!

[nora-n]

There has been at least one officially diagnosed celiac here with DQ1, and several here have reported DQ2,2. (the celiac gene is DQ2,5 which has the 0201 beta chain)

alpha chains matter also...

Check out this one Open Original Shared Link a small percentage of celiacs have Dq2,2.

also this one: Open Original Shared Link

nora

[BigDogz]

This was a wise doctor. I would go with her advice and diagnosis and run with it. Your body is letting you know that gluten for you is toxic and this doctor clearly recognizes it. Keep the doctor and lose the gluten.

Yes, I've realized that she was apparently VERY smart. I, on the other hand, am apparently a dumba$$ for muddying the waters with the Enterolabs testing. That being said though, my body has more than given me proof that it doesn't get along well with gluten AND it has given me equally certain proof that eliminating it makes me feel better, is helping me to lose weight and has resolved my intestinal symptoms. I still have a nagging but minor rash on my behind (I didn't mention that before) but it does seem as though the breakouts aren't as frequent nor as significant now that I'm gluten-free.

What's worse than being a dumba$$ for getting the genetic testing, though, is that I'm now feeling incredibly intellectually inferior because I am also apparently pathologically unable to understand all of the DQ's, alleles and numbers that go along with it. As far as I'm concerned, the whole mess looks like nothing more than alphabet soup.

Am I carrying DQ2? From what little I've understood of the genetics articles, it makes sense if I was, considering my German-Scotch-English heritage.

The results state that I carry 2 genes that predispose to gluten reactivity (one from each parent) but what are they? Are they the HLA-DQB1 thingies? Or are they the numbers - the 202 and 603?

Since I have 2 of these predisposing genes, does that make me a DQ2,2? If not, what exactly am I (other than stupid for not understanding this stuff - LOL)

[SLB5757]

Yes, I've realized that she was apparently VERY smart. I, on the other hand, am apparently a dumba$$ for muddying the waters with the Enterolabs testing. That being said though, my body has more than given me proof that it doesn't get along well with gluten AND it has given me equally certain proof that eliminating it makes me feel better, is helping me to lose weight and has resolved my intestinal symptoms. I still have a nagging but minor rash on my behind (I didn't mention that before) but it does seem as though the breakouts aren't as frequent nor as significant now that I'm gluten-free.

What's worse than being a dumba$$ for getting the genetic testing, though, is that I'm now feeling incredibly intellectually inferior because I am also apparently pathologically unable to understand all of the DQ's, alleles and numbers that go along with it. As far as I'm concerned, the whole mess looks like nothing more than alphabet soup.

Am I carrying DQ2? From what little I've understood of the genetics articles, it makes sense if I was, considering my German-Scotch-English heritage.

The results state that I carry 2 genes that predispose to gluten reactivity (one from each parent) but what are they? Are they the HLA-DQB1 thingies? Or are they the numbers - the 202 and 603?

Since I have 2 of these predisposing genes, does that make me a DQ2,2? If not, what exactly am I (other than stupid for not understanding this stuff - LOL)

First - I just shelled out 400.00 for the enterolab full panel as well - so I may be in the same boat as you. I imagine mine will come back fine and I will feel silly for ordering it One thing I remind myself is knowledge is power. I wanted to test to be sure that I should or shouldn't have my children screened. I do not want them suffering from the things I have suffered from. I would like to know if I am pre-disposed and hope that maybe it willat a minimum prompt doctors to look further. If everything is negative - I have to put an end to my Celiac craziness and really accept that I just have IBS (or I will decide to do gluten-free even though I am not Celiac because I feel better). Either way I will be informed and be making choices based off of genetic and diagnostic information not just assumptions on my part.

Second - you asked if you were a DQ2,2 - but by reading your results it said you were "Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)". I have no clue what that means because I haven't gotten my results yet or explanations - but have you tried googling the results and seeing what it said? I woudl say you are definitely DQ2,1 not DQ2,2.

[holiday16]

According to Enterolabs:

Fecal Anti-gliadin IgA 4 Units

Fecal Anti-tissue Transglutaminase IgA 1 Units

Quantitative Microscopic Fecal Fat Score Less than 300 Units (normal)

Fecal Anti-casein (cow's milk) IgA 2 Units

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0603

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

In the written interpretation they say that the IgA and atT are within normal limits (WNL)...basically that I'm NOT Celiac. They also note that I have no malabsorption issues since the fecal fat is also WNL. If I don't have a malabsorption issue then why was my B-12 low?

Moving on...in the next paragraph of the interpretation they indicate that I carry 2 genes that predispose to gluten senstivity and note that having "two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe." But I thought the first two numbers meant I WASN'T having an immunologic response to gluten? Am I Celiac or aren't I?

Just what the heck do my genetic markers really mean? And what am I to make of the line labeled 'serologic equivalent'? How is it logical that my tests appear to be saying no Celiac when my body is most certainly responding like it is? I've been gluten-free again for nearly 2 months now and I feel SO much better, I'm no longer bloated, I've had diarrhea only once in that time (glutened?), I'm not constantly hungry any longer and I've even lost 7 pounds!!

ARRGGGHHH! I'm so frustrated that I don't understand what's going on!!

[ang1e0251]

I don't understand any of the genetics and I thought I was a pretty smart person. I feel dumb when I read about it too. I'm glad there are people here who understand it for all of us.

Meanwhile, what I do know is how your body is responding to the gluten-free diet and that's the most important fact. Remember, dr's and geneticists are only still learning about celiac disease and they don't all agree about testing and results. Go to Europe and you will hear still different medical opinions. So I think I'm just going to let them argue about that stuff while I stick to my gluten-free diet and listen to what my body tells me.

[BigDogz]

First - I just shelled out 400.00 for the enterolab full panel as well - so I may be in the same boat as you. I imagine mine will come back fine and I will feel silly for ordering it...<snip>

I don't think it was silly to order it. You're only looking to protect your children from the misery everyone here has experienced and that's admirable. And, if the testing gives you some insight into what has been going on with your body, that's even better.

O.K., there are possible explanations for this. My parents did testing w/ Enterolab and we did it with 3 of our family members and did some medical testing. I noticed a trend for us to be barely positive even though we reacted severely. My sons tests came back as a 10 which is the lowest positive, but he had a fecal fat score of 1254 which is incredibly high. Didn't make sense really so I talked w/ Enterolab and when that is the case it's possible your Total IGA which can be measured by blood test is low-not deficient, but low. I had mine tested and it came back low, but just barely (my fecal fat was normal). My sons came back normal, but just barely. So they were on the low end of normal which is why we tested positive with such low numbers.

I'm really beginning to think that my IgA level is low, too. My Enterolabs testing is the second antibody testing that I've had that's shown SOME reaction, but not enough to make a doctor say it was clinically significant. My thyroid antibody testing came back with what I call a "half positive" result - I had some antibodies but only about half of what it would take for my doctor to say it was a positive result. I'm beginning to suspect that I am having auto-immune responses but it appears as though I'm not, possibly because of a low IgA. I just don't think it's worth the time, effort and expense to get it tested, too.

My son ended up having full celiac testing through a GI clinic and it all came back negative except the genetic portion which showed him to be in one of the highest risk categories. Based on that he had a scope done which came back negative. They even did some kind of extra testing on the sample and it still didn't pick up celiac. Given his symptoms and genetics for it they still recommended a diet trial which he had a dramatic response to and he is technically diagnosed as suspected celiac at this point. With the negative scope he can't be diagnosed as celiac by current standards.

Your son has a positive genetic test, a (barely) positive IgA and fecal fat that's through the roof and they go with 'suspected celiac' just because his scope was negative. How ridiculous is that? I mean, come on. If it walks like a duck and quacks like a duck, it surely MUST be a duck! It's not like you can be 'a little bit pregnant' - you either ARE pregnant or you're not. The same holds true for celiac disease. I just don't understand why it is that US doctors feel they have to wait until actual real damage occurs from an illness before they will finally get around to giving that official diagnosis and starting treatment. You see the same thing with diabetes. Instead of treating people with borderline-high sugars, they wait until the sugars are raging out of control and THEN try to get it under control. Stupid!

My youngest daughter had the worst reactions so she had no testing done except genetic because it was so obvious it was a problem. Surprisingly, she tested in one of the lowest risk categories for it. I talked w/ an NP and she said she stopped ordering genetic testing because she noticed the same thing in her practice. Those that should have the highest risk have less symptoms in general and those that should be low risk have more symptoms.

Very true in our family. The 3 of us that react the worst have the lowest genetic risk and the 2 that have less symptoms have very high genetic risk. If you're really curious you can ask your Dr. for the Total IGA, but it's really not necessary if you react that badly. Pretty obvious you have an issue with it.

As for the DQ genetics, you have the DQ2.2 which is also what my son had. However, he also had the DQ7 which finishes off the sequence and turns it into a true DQ2 celiac gene. My husband had a combination of DQ2.2 with DQ8 which also put him in a higher risk category because of the combination. My daughter had Dq2.2, but since she didn't have the DQ7 she is in the low risk category yet she reacts the most. We had a combination of Prometheus testing and Enterolab. If anyone cares the Prometheus testing very much back up the results we had w/ Enterolab as far as genetics. The problem was Enterolab does not do the more in depth testing like someone mentioned so it can miss some higher risk people like they did with my son.

It is very confusing and it took me forever to figure out, but it does all make sense )

Paulette

It's interesting that you and your physician have noted significant symptoms in people who are allegedly at low risk. It's also interesting that you note your daughter as a DQ2.2 as low risk since she doesn't possess the DQ7 or DQ8 genes. I'm positive that I read a research paper on the internet in the past day or so that said that DQ2.2's are almost always significantly affected no matter what other genes they carry, even if they're missing the 7 or 8 genes. If I remember right, it has something to do with the homozygous nature of having two susceptible genes. I'll have to check my browser's history file and see if I can find that info again so I can post it for everyone to read.

I don't understand any of the genetics and I thought I was a pretty smart person. I feel dumb when I read about it too. I'm glad there are people here who understand it for all of us.

Meanwhile, what I do know is how your body is responding to the gluten-free diet and that's the most important fact. Remember, dr's and geneticists are only still learning about celiac disease and they don't all agree about testing and results. Go to Europe and you will hear still different medical opinions. So I think I'm just going to let them argue about that stuff while I stick to my gluten-free diet and listen to what my body tells me.

I agree with you 1000%. I know how I felt and the awful things my intestines did on a "regular" diet. I also know how I feel being gluten-free and that my intestines have calmed almost completey down. No matter what risk level my genetics supposedly say I have, as far as I'm concerned I AM a Celiac and I'm completely committed to living a gluten-free lifestyle for the rest of my life. In fact, I went through my cupboards today and pulled all of my gluten-containing foods. The things that were opened got pitched. Those that weren't are getting donated to a local foodbank.

[Korwyn]

One thing that they do point out is that some people (and this tends to possibly run in families as well) have a low IgA count to begin with. The ultimate test is what your body is telling you which seems to be: stay off gluten! If you eat it and have a reaction, then you have a reaction regardless of the anti-body numbers. Tests may produce incorrect results, but your body doesn't lie. You might misunderstand it (your body) at times but it is the ultimate decision maker and advisor you need to be listening to here, not the test results.

[nora-n]

I have noticed that the typical celiacs are DQ2 and they tolerate some codex wheat starch (I am in northern Europe).

And the gluten sensitive sometimes have neurological symptoms from gluten and are DQ1 (which is DQ5 and DQ6) and tolerate absolutely no gluten...

By the way, typical celiacs have ttg2 antibodies, people with gluten ataxia have ttg6 antiodies (I have not heard of tests for ttg6) and DH patients have ttg3 antibodies. (no tests available)

Yes, if your total IgA is lowish, the tests are scewed.

Ask for IgG versions of the tests, by the way.

The strict test standards are because of some countries giving free gluten-free food or money to diagnosed celiacs. Here they get 200 dollars a month. My daughter got an official diagnosis despite of negative tests and biopsies (her scope looked highly abnormal, though) (she had been gluten-free for a wile and gotten significant improvement, then went back on gluten for six weeks for diagnosis)

It is also possible to be very gluten sensitive by another mechanism, not by ttg2, and the experts do know about that.

[BigDogz]

I have noticed that the typical celiacs are DQ2 and they tolerate some codex wheat starch (I am in northern Europe).

And the gluten sensitive sometimes have neurological symptoms from gluten and are DQ1 (which is DQ5 and DQ6) and tolerate absolutely no gluten...

By the way, typical celiacs have ttg2 antibodies, people with gluten ataxia have ttg6 antiodies (I have not heard of tests for ttg6) and DH patients have ttg3 antibodies. (no tests available)

Yes, if your total IgA is lowish, the tests are scewed.

Ask for IgG versions of the tests, by the way.

The strict test standards are because of some countries giving free gluten-free food or money to diagnosed celiacs. Here they get 200 dollars a month. My daughter got an official diagnosis despite of negative tests and biopsies (her scope looked highly abnormal, though) (she had been gluten-free for a wile and gotten significant improvement, then went back on gluten for six weeks for diagnosis)

It is also possible to be very gluten sensitive by another mechanism, not by ttg2, and the experts do know about that.

Nora, I'm still in awe of you and the fact that you understand all of the genetics involved in all of this. I think I'm understanding some things a bit better than I was before, but it still boggles my mind how a DQ1 can also be a DQ5 or DQ 6 and such-and-such combination reclassifies as a DQ8 or a DR7. Aaagghhhh...I guess it's good I never set my sights on being a geneticist because I would have failed miserably at it. LOL!!!

Yes, I understand that some European countries in particular will subsidize the expense of gluten-free foods. That is not the case in the US and that's why I can't figure out why US doctors are so hard-headed about listening to their patients and/or testing for celiac disease. I have a paternal 1st cousin who has Hashimoto's thyroiditis and lab documented pernicious anemia. She had a HORRIBLE time getting diagnosed with the PA. Her doctor just kept telling her that her thyroid meds were keeping her thyroid issues "in check" and that the symptoms she was experiencing just couldn't be happening. The only reason she finally got her diagnosis was because a new, young, inexperienced doctor was on duty the one day and was faced with an angry, frustrated, dissatisfied patient who demanded answers. The doctor felt my cousin was backing him against the wall and he didn't know what to tell her so, to save his own skin, he took a shot in the dark and viola! He freely admitted after the labs came back that he didn't think they'd show anything, he just did them because he wanted to do SOMETHING to get her off his back.

By the way, I see that you are from Norway. Where are you located there? I imported my Saint Bernard stud dog from a lady in Holmestrand, Norway. He's such a big, fluffy, affectionate cuddlebug and the light of my life. It just wouldn't seem right if I sat down on the couch and didn't have him laying next to me with his big, heavy head in my lap and snoozing contentedly while I absently scratched behind his ears. There's just nothing more soothing than running my fingers through his long, thick coat!

[BigDogz]

Since we were talking about IgA deficiency earlier in the thread, I thought this might be of interest to everyone. I found this info on the the website for the Journal of the American Society of Hematology. You can follow this link to read the full article:

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This is the paragraph specifically addressing the incidence of IgA deficiency and its association with celiac disease...

"celiac disease and selective IgA deficiency are associated more often than expected by chance alone. Approximately 2% to 3% of celiac disease patients have IgA deficiency, and up to 8% of IgA-deficient individuals may have celiac disease.12,129,130 Partial IgA deficiency has recently been described in 2 patients with DH.131 Patients with IgA deficiency have up to a 10-fold higher risk of suffering from celiac disease, and the prevalence of IgA deficiency among celiac disease patients is 10- to 16-fold what is to be expected in the general population.129,132 The importance of the association is 2-fold. Firstly, IgA-deficient individuals are prone to other enteric conditions such as inflammatory bowel disease or chronic parasite infections, especially giardiasis, which could mimic celiac disease. Secondly, patients with IgA deficiency are at risk of developing anaphylactic transfusion reactions that may be life threatening if the recipient has anti-IgA antibodies."