Who Knows What Their Genes Are?

[annacsmom]

How can they possibly know for sure that tTG in their stool test is *only* caused by gluten. What kind of studies have they done to support this?

[AndreaB]

Here is an excerpt from an email response I got earlier.

IgG reactions (normal food allergies) can come and go, but IgA reactions (immunologic sensitivities mediated by a T cell reaction in the intestine) once triggered are for life, as far as research can tell. This is supported by the fact that the IgA antibodies do eventually decline once the offending food protein is eliminated from the diet, but when that food is reintroduced into the diet, the IgA antibodies will begin producing again. Our tests are actually ELISA tests as well, but we are testing for IgA antibodies instead of IgG.

Don't know if that helps any or not.

[Guest Kathy Ann]

My entire personal odyssey ending in my finding out I was probably celiac, actually began with a simple saliva test for IgA sensitivities.

[Rachel--24]

My entire personal odyssey ending in my finding out I was probably celiac, actually began with a simple saliva test for IgA sensitivities. I tested positive for 3 major proteins: gluten, egg whites and casein. Of all my tests, I consider this one to be the most important if it is true, since these would be inherited, lifelong, permanent allergies. Does anyone have an opinion on this type of test? I realize that saliva tests can maybe produce false "negatives", but I have been told that they rarely produce false "positives." My enterolab agreed on the casein and gluten. I didn't test with them on eggs.

I dont know much about saliva tests but I dont think they would be useful for diagnosing Celiac....at least I'm unaware of this as being a reliable method of testing?? Possibly someone else has more knowledge about these tests?

[Rachel--24]

I have just read through this entire thread, and I am very interested and concerned about all of these issues. I have just thoroughly read through the different blood test descriptions in Dr. Greene's book, and your discussion on tTG really struck a nerve. Dr. Greene states "Yet, the tTg antibody is not 100 percent specific - there are other causes of its being positive, and they include diabetes, heart failure, and liver disease. Also, people who have celiac disease can have a negative tTg test."

Also, I just had my son tested through enterolab and have really scrutinized the results, in conjunction with Dr. Greene's book. One very important aspect I discovered is that enterolab tests the antigliadin IgA antibody. Here is what Greene states about IgA IgG antigliadin "They may be seen in conditions apart from celiac disease and are, therefore, not highly specific for celiac disease. They may also be seen in people with no detectable diseases. The antigliadin antibody tests were the first serology tests for celiac disease and have outlived their usefulness. Their major role is following compliance to the diet."

If they have outlived their usefulness, the why doesn't enterolab still use it. According to Greene, IgG endomysial antibodies are virtually 100percent specific for celiac.

Obviously I share your concern about the specificity of the tTG antibody. As far as the IgA and IgG antigliadins.....I had always read that it was *only* the IgG antibodies which are not specific for Celiac Disease and can be seen in conditions other than celiac. I had never read that about IgA though.

I'm not sure what everyone's opinions are about Dr. Greenes book. I bought it but then returned it without reading it because I had heard negative things about the book.

Another contradiction....he is saying that the EMA is the best test....but I was always under the impression that tTG has now become the most reliable test.

I'm mainly concerned about Dr. Fines stool test....not so much the blood tests. I believe when a bloodtest has positive antigliadin IgA and positive tTG.....then that would be highly specific for Celiac. If the only positive test were the IgG.....then that would be less specific....because it can be elevated in other conditions as well.

I'm questioning a raised tTG level in Enterolabs stool test.....when there is no indication of Celiac and no Celiac gene. What does the tTG truelly indicate here?? My malabsorption did not improve on a gluten free diet and my symptoms were/are caused by other factors. If tTG is "specific" for Celiac then why are all these "non-celiacs" coming back with positive tTG's in Dr. Fine's test?? I have never gotten a clear answer for this question. I know people have asked Phyllis at Enterolab this very question and yet still....there is no clear answer.

[annacsmom]

Obviously I share your concern about the specificity of the tTG antibody. As far as the IgA and IgG antigliadins.....I had always read that it was *only* the IgG antibodies which are not specific for Celiac Disease and can be seen in conditions other than celiac. I had never read that about IgA though.

I'm not sure what everyone's opinions are about Dr. Greenes book. I bought it but then returned it without reading it because I had heard negative things about the book.

OK now I'm very confused. I thought Greene was pretty reliable and haven't heard any negative comments about him. Can anyone give me any specifics? Also, I am assuming that the tTg in the stool would be the same as in the blood, but only more pronounced. After all, that's enterolabs claim to fame, isn't it? I just don't know what to make of my son's results. I posted on the "testing" forum his results. If you wouldn't mind, maybe you can give me some input?

[happygirl]

The main reason that some people have problems with Dr. Green's book is that he (and almost all other Celiac experts, including Dr. Fasano) pushes the biopsy as the gold standard for dx'ing Celiac....and in the traditional medical community, it is. His book doesn't cover very well the implications of gluten intolerance etc (he briefly covers it). So, for those of us who struggle with a non-100% diagnosis, the scientific part is not substantial. But, the book is about CELIAC, not gluten intolerance/sensitivity. He covers what is known about Celiac.

but, all of the other information would still be useful to someone avoiding gluten. he covers related disorders, genetics, etc....

something important to note is that they DONT know everything....and for them to publish ideas in depth that they don't know about would be irresponsible WHEN it is a book specifically about Celiac. He might not go in depth into all areas (i.e., gluten intolerance) but he does cover them and even lists the types of potential research that is on the horizon (i.e., he openly lists ideas and hypotheses, just doesn't dwell on them, because so little is known in terms of RESEARCH). However, he really goes out of his way to say that they don't know a lot....that they don't know what the interplay is with the genes, and how genes are only a small part of it.

I am someone who does not have a positive biopsy (long story, ha!) but to me, that is something that I can overlook when I am reading it. I have gained such valuable information from it. It is important that we read and make educated decisions ourselves.

In terms of Celiac experts....there are very few others that you will find who are more committed and more dedicated to advancing the Celiac agenda. Hopefully others will learn more about gluten intolerance and sensitivities, and will further the knowledge base there.

[Jestgar]

From:

Tissue transglutaminase ELISA positivity in autoimmune disease independent of gluten-sensitive disease

RESULTS: Many sera from patients with autoimmune disorders gave a positive signal in the human TGc ELISAs. The signal appeared related to minor impurities in the recombinant human TGc used and to raised serum IgA antibody levels rather than to the occurrence of TGc specific antibodies in these patients. CONCLUSIONS: No association of anti-TGc Abs and autoimmune conditions independent of gluten-sensitive disease could be shown. Care should be taken to exclude copurification of chaperones, like heat shock protein 70, where preparing antigens for TGc ELISAs.

Translation: If you have high IgA levels for any reason, you may get a false positive on an ELISA. If your serum isn't properly prepared you may get a false positive on an ELISA. The last sentence may or may not be relevant for the Enterloab test. I don't know about their purification methods (although I would assume they are pretty good, considering the source....

[Rachel--24]

Also, I am assuming that the tTg in the stool would be the same as in the blood, but only more pronounced. After all, that's enterolabs claim to fame, isn't it?

Yes....it is their claim to fame.....but is it valid? We dont really know because Dr. Fine has not yet published anything for peer review. So.....we are just taking Enterolab's "word" for now. When people have positive tTG in the blood...they are usually diagnosed Celiac. They either have a positive biopsy (although this is not always the case) or they are gene tested and carry a Celiac gene. This is probably the case in nearly all positive tTG in bloodwork....there is a likelihood of having Celiac.

This is NOT the case with Enterolab....elevated tTG in the stool test occurs for a great number of people getting tested... who have no liklihood of EVER being diagnosed Celiac. They do not all carry a Celiac gene. I dont carry a Celiac gene and my biopsy and bloodtests were normal....yet I have elevated tTG in Enterolabs test.

It *cant* be the same as what is found in the blood....because those who are positive in the blood have Celiac Disease.

We dont know much at all about the stool tests (other than what is written on Enterolab's website) so I am wanting to see if my elevated tTG could have been caused by a condition *other* than gluten intolerance.

The tTG is specific for damage occurring in the intestinal tract....an autoimmune response. When there is no possibility of Celiac ever developing...and a person like me has *alot* of damage (very high malabsorption)...which does NOT improve from simply eliminating gluten....it makes me suspect that the raised tTG could be caused by something else.

Also...Enterolab states that the tests detect tTG *before* it reaches the blood and causes enough damage to be seen in biopsy. This *may* be the case for those carrying a Celiac gene...but not for those of us who are "non-celiac gluten sensitive". I dont believe that if I would have continued eating gluten I would have EVER ended up with a positive biopsy.

Translation: If you have high IgA levels for any reason, you may get a false positive on an ELISA. If your serum isn't properly prepared you may get a false positive on an ELISA. The last sentence may or may not be relevant for the Enterloab test. I don't know about their purification methods (although I would assume they are pretty good, considering the source....

Thanks.....this is useful information.

I would assume that false positives can also occur in the stool test but of course we cant really know for sure.

[CarlaB]

Rachel, it also seems that someone under a state of constant infection, as you have been from Lyme Disease, would have food/environmental sensitivities due to the immune system constantly being at work. It would seem, logically as I've not read anything specific on this, that someone whose immune system is constantly at work would have a likelyhood of it becoming autoimmune. So, I find my reaction to gluten to be very real, and Enterolab confirmed it, yet I wonder if when I get rid of whatever has my immune system working constantly, will it stop reacting to gluten in an autoimmune way? I'd bet there hasn't been a study on whether non-celiac gluten-intolerance can go away when whatever triggered it is no longer present. I know for celiacs this is not the case.

As you can see, my Enterolab numbers were higher than yours, but I've been sick for almost 30 years (cyclically, not constantly).

[Rachel--24]

Rachel, it also seems that someone under a state of constant infection, as you have been from Lyme Disease, would have food/environmental sensitivities due to the immune system constantly being at work. It would seem, logically as I've not read anything specific on this, that someone whose immune system is constantly at work would have a likelyhood of it becoming autoimmune.

Carla, this is another big question. As we know...I react to *everything*...gluten is just one of MANY things affecting me. How do I know there is truelly anything "autoimmune" going on though. While I'm sure a great deal of people with non-celiac gluten sensitivity *can* develop an autoimmune response to it....I'm sure it cant be autoimmune in *every* case. Who's to say it wont go away with all of the other intolerances??

I was fine with eating gluten, being around perfumes/chemicals, all other foods, etc...before the Lyme infection....if its possible for the chemical sensitivities and other food intolerances to go away....why isnt it possible that the gluten intolerance will go away too...since I dont carry a Celiac gene?

Right now my immune system is in over-drive....it thinks *everything* is bad....once this calms down its not gonna continue "attacking" everything it encounters.....at least I hope not.

I think there is a good chance if I were to fully recover I may be able to eat gluten with no harm to my body. The thing is ....I'm not so sure I would be brave enough to eat it.

[AndreaB]

Rachel and Carla,

You bring up very good points. I'm looking at the dq1 and it's notorious label of being the neurological gene primarily. So, if some with dq1 have had symptoms resolve going gluten free then what do we make of that?

This is all very interesting.

Although my family all have celiac genes, no one had a positive ttg level. We did test positive for the IgA antibodies through enterolab. From what Phyllis said once that is triggered it is a lifetime thing. Let's take this a step further. My husband didn't test intolerant to dairy through enterolab but his ELISA test he was high/moderate (IgG), same with the eggs. I would take that to mean that neither of them are lifetime intolerances at this point. Does that make sense?

[Rachel--24]

Rachel and Carla,

You bring up very good points. I'm looking at the dq1 and it's notorious label of being the neurological gene primarily. So, if some with dq1 have had symptoms resolve going gluten free then what do we make of that?

Andrea,

Do we know of any DQ1 non-Celiac individuals (no celiac gene) that have had a COMPLETE resolution of symptoms while on a gluten-free diet?? When I was reading on the Braintalk board there were many people with DQ1 who had severe neurological symptoms.....it didnt seem like the majority of these people were OK with just going gluten-free. They had many issues still...many food intolerances, etc. As is the case with me.

Could it be that those of us having DQ1 are more prone to develop neurological symptoms in the presence of *any* illness.....because that is part of our genetic make-up??

Take Lyme Disease for example...it affects people differently...they will suffer symptoms most likely wherever they are most vulnerable...the brain, the joints, the GI tract, etc. I am inclined to believe that our genetic make-up has alot to do with how and why Lyme presents itself differently in every case.

From the beginning my symptoms were primarily neurological...it has now extented into other areas such as my digestive tract but primarily the symptoms were neurological. Here...we are mainly addressing DQ1 as a "gluten sensitive" gene.....but I'm sure neurological symptoms that are linked with this gene can be present in other diseases as well. Therefore....in my mind....it wouldnt be conclusive to say DQ1 + neurological symptoms = Gluten Intolerance.

In my case it could very well be...Lyme Disease + DQ1 = neurological symptoms. This could also be 10-fold if the Lyme has triggered an autoimmune response to gluten. Isnt it possible that this could be a reason many people (like myself) might feel *better* on a gluten-free diet....but yet are still sick??

[Rachel--24]

We did test positive for the IgA antibodies through enterolab. From what Phyllis said once that is triggered it is a lifetime thing.

Well....that would depend on how reliable these stool tests really are. We wont know for certain until Dr. Fine's studies are available for peer review....until then we just have to take Phyllis's word for it.

Thats why I would like to retest sometime in about 6 months.....under an assumed name.

[happygirl]

Rachel, so I am laughing, thinking up what your assumed names should be....oh dear, where should we start?

[AndreaB]

In my case it could very well be...Lyme Disease + DQ1 = neurological symptoms. This could also be 10-fold if the Lyme has triggered an autoimmune response to gluten. Isnt it possible that this could be a reason many people (like myself) might feel *better* on a gluten-free diet....but yet are still sick??

Makes sense to me. It would seem to be a matter of what causes what. In your case I would tend to believe that the lyme triggered your gluten reaction. That could very well be the case for other dq1's out there too.

[Rachel--24]

Rachel, so I am laughing, thinking up what your assumed names should be....oh dear, where should we start?

I hadnt even given it a thought and now.....I think I'll be laughing about this for awhile.

Hmmm....

[annacsmom]

Now I'm confused about what constitutes having celiac if there are no symptoms present. For example, my son (13) tested as follows: Antigliadin IgA 20; Transglutaminase IgA 10; genes: HLA-DQ2 and HLA-DQ1. If one doesn't go the biopsy route, which I'm not convinced is conclusive, then how does one really know if it is celiac? He is very healthy, growing very well, and the only real medical complaint is a stuffy nose (allergies). What do I do with him? Should he be gluten free for the rest of his life? The only reason why he was tested was because his older sister has had a history of autoimmune diseases and now is gluten free.

Anyone have any advice, please???

[CarlaB]

I also have two DQ1 genes, but with Enterolab I tested as having an autoimmune reaction. I just wonder if in non-celiacs if the sensitivity will go away when the other health issue (like Lyme) is resolved since it's not celiac. Could it just be an overactive immune system because of another ongoing infection? I have definately not gotten better "just" being gluten-free. There is more.

Annacsmom, according to Enterolab your son is having a reaction to gluten. You are right, the biopsy is only conclusive if it's positive. With your son's low numbers, I wonder if it would be. Mine are significantly higher and my biopsy was negative. The current definition of celiac is a positive biopsy, but there are others who are gluten intolerant, or who have developing celiac ... it's not like your intestine is damaged all in one day! If he's really developing celiac, there are benefits to catching it before damage is done ... he will be a lot healthier for it.

My daughter finds her allergies being completely eliminated to be a good enough reason to stay gluten-free ... and she's a college student. I never had her tested, she just went on the diet on her own when my seasonal allergies went away.

[AndreaB]

Now I'm confused about what constitutes having celiac if there are no symptoms present. For example, my son (13) tested as follows: Antigliadin IgA 20; Transglutaminase IgA 10; genes: HLA-DQ2 and HLA-DQ1. If one doesn't go the biopsy route, which I'm not convinced is conclusive, then how does one really know if it is celiac? He is very healthy, growing very well, and the only real medical complaint is a stuffy nose (allergies). What do I do with him? Should he be gluten free for the rest of his life? The only reason why he was tested was because his older sister has had a history of autoimmune diseases and now is gluten free.

Anyone have any advice, please???

If he has the dq2 gene and he already has a slightly elevated IgA, it is just a matter of time (who knows how long) before it would manifest into full blown celiac. I would consider him at the beginning of it, without much (if any) damage. Although his ttg is just at the positive mark with the dq2 gene I would assume that means he's started toward celiac. I could be wrong on the ttg. I'm not real sure what that does.

[Rachel--24]

Now I'm confused about what constitutes having celiac if there are no symptoms present. For example, my son (13) tested as follows: Antigliadin IgA 20; Transglutaminase IgA 10; genes: HLA-DQ2 and HLA-DQ1. If one doesn't go the biopsy route, which I'm not convinced is conclusive, then how does one really know if it is celiac? He is very healthy, growing very well, and the only real medical complaint is a stuffy nose (allergies). What do I do with him? Should he be gluten free for the rest of his life? The only reason why he was tested was because his older sister has had a history of autoimmune diseases and now is gluten free.

Anyone have any advice, please???

Your son has a Celiac gene....so he *could* at any time in his life have that gene "triggered". My guess is that at this time he would more than likely test negative for Celiac in all traditional testing.

The biopsy is not conclusive. The Enterolab results arent conclusive for Celiac either.

So what do you do with him? Thats something you'll have to decide...based on what you've said there *is* a history of autoimmune disease in your family....so thats something to think about. You could try him on the diet for awhile and see if there are any changes...the allergies might clear up and they might not. If they *do* clear up....it would be an indication that its better for him to be gluten-free. It still wouldnt mean that he has Celiac Disease at the moment but since he has the gene.....he is susceptible.

It cant hurt to try the diet...if there are no changes whatsoever and you decide to do a gluten challenge and there are no symptoms reappearing when gluten is reintroduced then he most likely isnt having a problem with it. Keep in mind that it may become a problem down the road so if you keep him on a regular diet....you would want to be aware that *anything* that may come up later may be caused by gluten.

If it were my son I would probably try the diet and do a gluten challenge since he has no serious symptoms. He may even realize that he just feels better overall....maybe he will have more energy or maybe he will notice things that he wouldnt notice otherwise. You wont really know unless you try it out.

[Nantzie]

Andrea,

Do we know of any DQ1 non-Celiac individuals (no celiac gene) that have had a COMPLETE resolution of symptoms while on a gluten-free diet?? When I was reading on the Braintalk board there were many people with DQ1 who had severe neurological symptoms.....it didnt seem like the majority of these people were OK with just going gluten-free. They had many issues still...many food intolerances, etc. As is the case with me.

Yoo Hoo! Me!!!!

I have double DQ1, had neuro issues to the point where I could barely walk most days. I had to use the grocery cart as a walker and it would take me a couple hours just to get a small list of things. If it weren't for me finding out about gluten intolerances, on that next doctor appt I would have been asking about how to get a handicapped placard for my car rather than asking about celiac. I was starting to look into Lark Scooters and things like that too because it was just getting worse. I had one of those things that old people use to pick stuff off the ground - a grabber. I couldn't even bend over to pick stuff up.

I also was starting to get tongue swelling to where it was hard to talk. Then there was the time I tried to stand up and I collapsed instead. My legs were all of a sudden were like cooked spaghetti. I had to pull myself back into bed just using my arms. Not sure if that had anything to do with gluten at all, but in the middle of all of these other pain issues (induding all the classic celiac GI symptoms), which lasted the last couple of years, it was terrifying.

When I went gluten-free everything went away like somebody flipped a switch. I haven't had any neuro problems since then, other than when I get glutened. And I usually get worse neuro symptoms than GI.

I know how lucky I am because I've seen that a lot of people with DQ1 don't have such strong improvement. When I first found out my genes someone here told me that DQ1 can be more multi-system than some of the classic celiac's experience, with pain and other neuro symptoms being one of the things that is much worse.

Most of the time when I get glutened I get neuro symptoms and have a hard time walking, but only have mild to moderate GI symptoms. Nothing ever as bad as before I found out about gluten. But even the smallest amount will cripple me up for a couple of days at least. It's not as upsetting now though because I know it will be gone in a couple of days.

Are you still working at the grocery store? I wasn't part of your Rachelville stuff. Looked like a lot of fun over there, but I get overwhelmed with long threads like that. So I'm not sure what your job situation is right now. The last thing I remember is you getting the go-ahead to go back to work.

It would totally make sense to me that Lyme triggered the gluten intolerance, etc. I wonder too if gluten intolerance is for life like celiac or not.

We should all get together and create a research foundation so we can get OUR questions answered. The DQ1 Gluten Intolerance Research Foundation.

With celiac only starting to get SLIGHT interest in the medical community, those of us with non-celiac are probably going to be waiting 20 years before we get any answers to our DQ1 questions.

Nancy

[Guest Kathy Ann]

I would like to know how many people on this board have primarily neurological/emotional issues with few digestion ones. I wonder what percentage we represent of the celiac community???

[Rachel--24]

I also was starting to get tongue swelling to where it was hard to talk. Then there was the time I tried to stand up and I collapsed instead. My legs were all of a sudden were like cooked spaghetti. I had to pull myself back into bed just using my arms. Not sure if that had anything to do with gluten at all, but in the middle of all of these other pain issues (induding all the classic celiac GI symptoms), which lasted the last couple of years, it was terrifying.

Nancy,

Thanks for your post!

Most of the symptoms you've listed I had as well. Its funny that I forget alot of the things I went through because its been a long time since I've experienced those symtpoms. I had a swollen tongue too...It was hard to talk and I'd slur my words as if I was drunk. I had no noticeable GI symptoms my first 2 years of being sick.....it was all neuro....and it was BAD.

When I first went gluten-free it wasnt deliberate...I was just getting myself on a VERY strict candida diet...and eating almost exclusively organic. There was DRAMATIC improvement. Later on when I got my Enterolab results I thought I would be ok as long as I didnt eat gluten....I started adding normal foods back in....all gluten-free of course. Slowly but surely I started getting worse....but never as bad as I was prior to ever making the diet changes.

My diet is so restricted now. I cant eat anything that is not organic. I react immediately to the pesticides and chemicals. I cant eat processed foods....doesnt matter if they are gluten-free or not...I cant eat them. So really....I have no idea if removing gluten helped with the neuro symptoms or not. My diet went from one extreme (fast foods, microwave dinners, everything processed)....to the next....(a very clean organic diet with nothing processed).

Obviously the dramatic improvement I experienced wasnt just from eliminating gluten. I need to eat a clean chemical-free diet in order to function. Its frusterating to not be able to determine how much (if any) gluten played into this.

I *did* get myself well enough to return back to work.....sooo...even with the Lyme still undiagnosed....the diet changes alone made a HUGE difference. I just dont know if it was gluten that was disabling me....or my toxic fast food diet.....or both.

I do still work in the grocery store (Safeway)...I manage the dairy dept. now.

I've been back to work for 14 months now and I'm doing really well as far as that goes. Thanks for asking.

My only real problem with work is my chemical sensitivities and being exposed to perfumes, colognes and all the "scented" stuff. Everyone at work is very understanding and goes out of their way to make things easier for me....they are awesome!!

You ARE very lucky to have had the kind of results you've gotten from the diet. Although I improved it wasnt a complete switch to perfect health by any means.....but then again I was totally unaware of the Lyme situation. If the gluten intolerance is *real*.....then in my mind....I'm 100% certain it was a direct result of the Lyme infection. I had no intolerances or symptoms of any kind prior to the Lyme. All of a sudden I just got hit hard.....with everything occurring all at once.

Thanks again for your post....I'm sure there are others out there with DQ1 and a complete recovery on the diet.....its probably not all that common but it does show that it *can* happen. I cant remember if you ever had the biopsy?? It would have been interesting (if it had been done before you ever went gluten-free).....to see what the results would have been. You might have been in that 2% of people with positive biopsies and no Celiac gene. I think in those rare cases the people without a Celiac gene are actually carrying the DQ1 gene.

Its really amazing that you went through all that and now have totally regained your health....I'm really happy it turned out this way for you. Its really inspiring.

I'm working really hard to get to the same point that you're at.....hopefully it will be soon.

[Rachel--24]

I would like to know how many people on this board have primarily neurological/emotional issues with few digestion ones. I wonder what percentage we represent of the celiac community???

I wonder if the Celiacs that have primarily neuro. symptoms are carrying the DQ1 gene along with their Celiac gene....I'm betting they are. I'm thinking DQ2=GI symptoms and DQ1=neuro symptoms. When both genes are present its probably the DQ1 symptoms that are more pronounced. Thats just a guess though.