Hla-dq 1,1 (subtype 6,6)

[linda7276]

No...there is no enzyme available to correct the problem. Whatever is causing the problem needs to be identified and corrected.

The whole description that I just gave has to do with one enzyme system in the body. So people having problems with this particular enzyme will have the issues with phenols.

There are many other problems that can develop from dysfunction in other systems within the body....this was only one example. Gluten and casein require the DPPIV enzyme....so if this is inhibitied (it is easily blocked by mercury) then the person affected becomes intolerant to these foods....because they will not be able to digest them.

Personally, I believe that in most cases the food reactions are not a result of the foods themselves....but because the body has lost its ability to process them.

It is helpful to know which foods or food components are causing problems because it *may* pinpoint a problem within a certain enzyme system or give some indication of what might be out of balance....and what might be necessary to correct it.

Its alot of work...no doubt about that....but in the end it will have been well worth my while.

Right now I'm being tested for some of the things we suspect may be causing problems.

As my Dr. described it..."The system is dysfunctional but it may be that all of the "doors" are open....and yet *one* door is closed somewhere. If we can find that one door....and open it back up....then the body functions normally again...as it once did."

So yes....by pinpointing the *exact* cause for reactions....it does narrow the search. Otherwise it can be like searching for a needle in a haystack. You dont know where to start looking.

This information is amazing and incredible Rachel, I hope you are keeping good documentation of it all, though you seem to have great recall. One day hopefully you'll have the answers and will be able to write a book!! Though no one will ever be able to really appreciate the research you've put into this. I am amazed at the depth of your research!!

My brother just called me, he tested positive for 'gluten sensitivity' he just did the stool test...but I would have been surprised if it had been negative, he has been suffering from fatigue, anemia, and osteoporosis..he is in his 40's. He said a while back his doctor thought he had it figured out, that it was Celiac, but his blood test was negative. Another part of our family history is that my sister's daughter (my neice) was diagnosed as having Celiac when she was still in diapers...it was a long time ago, and if only I'd have paid attention then.

Then again, I think we receive information when we're ready for it.

Keep us informed of your appts. and their findings, and thanks again!! Linda

Hey what about probiotics?

[Rachel--24]

My daughter has one of the DQ 6 gene linked to Lyme arthritis, maybe her twin brother does too. Luckily, she never had any bone pain or joint pain at all. We caught it right away and treated her promptly. I do have muscle, and joint issues. My dr. says it is genetic, but I am not sure. I have had them forever though.....as long as I can remember.

Interesting about the genes. I'm not very good at interpreting them....it kind of makes my head spin.

Its weird how I cant retain all this info...and have such a good understanding...but as soon as I see any "numbers"....everything just kind of goes haywire!

I used to be good with numbers....but apparantly something happened with that part of my brain.

Anyways....I never knew what genes were linked with what.....just that some people are more genetically susceptible to Lyme. Its the toxins that are produced by the bacteria which some people are less able to cope with. The same is true about mold.....some people are more susceptible...and genetics plays a big part in it.

If you actually had Lyme yourself for all these years....then the bacteria would have likely been passed on to the kids. Its proven that the bacteria crosses the placenta and many kids are born with congenital Lyme. Even though its very common for people to have been exposed....not everyone is affected. Some people never experience symptoms...and yet in some families several people are experiencing health problems caused by Lyme.

To me that points to genetic susceptibility.

I think I might have mentioned it to you before...but I seem to be one of the ones who isnt very affected by the Lyme toxins. I cant understand how that would be possible without genetics having some say in it....because I have all of these things going on...and yet Lyme doesnt seem to be a big issue for me.

It took alot of time and testing to determine how big of a role Lyme was playing in all of my problems...and in the end it seems to not be a real significant factor. But for alot of other people it can be a huge issue.

Linda, sorry I didnt get to the questions regarding Lyme. I ran out of time...but I'll be back later.

[Rachel--24]

Stress was a huge factor in my health. And the multiple layers are front and center. Within 2 years I had a complicated pregnancy, delivered my son, 12 weeks of screaming cholic and no sleep, my husband left, I spent 10 months alone with 2 kids and raging Grave's Dz, had my mercury fillings out unprotected, prepped house and sold by myself, packed and moved 2 kids and house by myself, was probably exposed to Lyme as this is when my dtr got it (Baltimore), lost all my hair, had RAI, filed for divorce, and had 2 surgeries (unrelated). Another thing I did to myself was majorly stress my system by self-medicating with Armour Thyroid... to the tune of 10 grains per day. I honestly believe that I was not absorbing the hormones, but at one point I started and my nerves were so "wired", I was tremoring while asleep. I am ok now with the Armour, but have to chalk that up to stupidity.

Wow Tracy...you had alot going on!

I had alot of stresses too. Right before the symptoms appeared I was trying to get pregnant...but within a month I got hit with all the symptoms...so now thats been on hold for almost 6 years now.

Anyways I had the fillings drilled out unsafely (didnt even know about mercury at that time)...that same week I went camping and basically our campsite was totally invaded by deer. No kidding...I have pictures of them all around me. I guess they were used to being fed....and I obliged.

I dont know if I could have been exposed to Lyme at that time...but since I was very outdoorsy and camped all my life...I'm sure there may have been other exposures.

It was right after that that the symptoms started appearing. I was kind of stressing over getting pregnant and at the same time I was trying to kick my 14 year smoking habit (and I did). Went back to the dentist to have my new gold crowns put in (replacements for the fillings). After that I got alot worse. I wasnt aware that dissimilar metals cause galvanic reaction....I still had 2 mercury fillings left which were in direct contact with the gold crowns. So there was a "battery-like" reaction between the metals....like an electrical current. I think that really did me in.

I had just got promoted and was pushing myself really hard...never stopping to eat...I also commuted to work 2 hours each way....so my days were long. Then I started having problems in my relationship because I wasnt feeling good. I was no longer able to handle any stress at all...and the Graves was active again. I was having daily headaches and all of a sudden major hairloss.

The neurological symptoms were getting worse and everyday it seemed like new symptoms were popping up. A couple months later I had to go on disability....then I went through RAI. Right after RAI things got really bad. Then I had breakouts all over and I was given the tetracycline....which I took. Next thing I know I've got all the fluid retention, inflammation and at the end of each day my stomach looked about 7 months pregnant. By that time I had a really long list of symptoms. I cried almost everyday.

I have no idea how many different meds I took that first year....including a brief round of steroids and lots of antibiotics...none of the antibiotics were prescribed for bacteria infection!!

I really dont understand the ignorance and the irresponsible way that these drugs are passed out like candy. If only I'd known better.

I had a ton of stress due to being off of work and with having no resolution of my symptoms after RAI I was very scared too. I lost my relationship during the first 6 months and because I had lost my ability to cope it was particularly difficult for me to get through it.

I started smoking again...and basically smoking was all I did because I'd lost my appetite due to the stress.

My diet was unhealthy, I was smoking, crying, stressing out and spending half of my time in doctor offices dealing with Dr.'s who were not at all helpful and in fact were causing me to become severely depressed. Thats pretty much how it went for almost 3 years....until I finally got out of my HMO and started taking control of my health.

I was able to pull myself out of that mess...and my life is much better now. Of course I'm still working on regaining my health.....but at least the worst part is over.

[Rachel--24]

dulpicate post

[Rachel--24]

GOOD FOR YOU!! YOU HAVE MY FULL SUPPORT! Not that you need it...but if we are not PROACTIVE in our healthcare, no one will be. We have to be informed, and proactive. I hope and pray that you find ALL the answers soon.

I too have learned to listen to my body, but I wish I had been as smart as you at your young age. I knew the doctors were wrong back then, but I didn't have a clue where to look for the answers....you are light-years ahead of where I was, and I encourage you to GO GIRL!! Maybe you will be the one to shed the answers on this whole big confusing puzzle for the rest of us.

You are NOT A QUITTER

Linda,

I wanted to thank you for all your words of encouragement.

Without the support of people on this forum (especially those who have posted in the OMG thread over the past couple years) I would definately not have been as strong and as determined as I've been. I gained alot of strength from the the friends I've met here. I dont think I'd be where I'm at now if not for this place and all of the people who are here offering support and encouragement.

...and I'm glad you found us.

[Rachel--24]

Linda....to answer one of your earlier questions....I'm 5'2 and 110 lbs.

I still need to gain some weight.

Interesting

[Rachel--24]

This information is amazing and incredible Rachel, I hope you are keeping good documentation of it all, though you seem to have great recall. One day hopefully you'll have the answers and will be able to write a book!! Though no one will ever be able to really appreciate the research you've put into this. I am amazed at the depth of your research!!

I guess my documentation is all right here on this board...well, mostly in the pages of the OMG thread. I posted everything as I learned it...as well as all of my experiences, doctor appts, treatments, etc. So if I forget something its all there.....I just have to find it in a search.

The research has been like a fun "project" for me....I dont know why but I found it exciting.

Its kind of strange considering that before all of this the only thing I was really "researching" was which outfit to wear on Friday night.

I seriously had no knowledge of anything regarding health issues....or diets....or toxins....or anything that I've mentioned in these posts. I was blissfully ignorant.

But now everything is different....and life actually has more meaning. I appreciate things more than I ever had, and I have more compassion for others...so lots of good has come out of it.

As far as writing a book OMG...I have heard that so many times now that I'm starting to wonder if thats my "mission" or something.

Seriously, I'm not sure what I'll do when I get better. I know something will come out of all this....I'm just not sure what it is yet. I guess I'll have to wait and see.

Theres alot of info. that I can eventually sort through and try to somehow put it to good use....just not sure how yet. I really dont see myself as an "author".....but hey....you just never know...stranger things have happened.

[linda7276]

My count is not as high as it should be....but it is still good. I treated Lyme for awhile with natural treatments....not antibiotics.

Can you share with me some of the natural treatments? I ordered several books yesterday from Amazon, about leaky gut, and probiotics. I also ordered some probiotics. One other thing I've been meaning to mentioning is (might be off-topic), is Cilantro. I read about it in some of the other threads...(still trying to find my way around) and I LOVE Cilantro, and eat it all the time, chopped up fresh on my salads, just started that several months ago. I used to cook with it too, but once I discovered the refreshing taste I began to put it in my salads. So hopefully I've been ridding my body of toxins, and reading what I read, made me keenly aware that we must be moving stuff out regularly too...and sometimes that is a problem for me.

I never heard of a LLMD see what I mean about you...amazing. And now that I'm thinking about ticks and Lyme, I realize that before I could get my new puppy on tick medicine, the vet found 4 or 5 ticks on her...I was shocked because I hardly let her on the ground...she's a house dog...paper trained, he said they jump as high as 5 feet...yikes. Anyway are all ticks a threat or just the ones that hang out with the deer?

Fedora if you are following this. The DQ6 that I have is that implicated in Lyme disease, I read where you wrote that your daughter has that gene too. I hope your children are well, nothing hurts us more than when our children suffer!

I'm sorry Tracy too, because we've taken over your thread.

I have to go to the doctor's in a bit, gonna get my food allergy panel drawn, and I'll be back later to comment on your other posts... Linda

[trcn]

Wow Tracy...you had alot going on!

I had alot of stresses too. Right before the symptoms appeared I was trying to get pregnant...but within a month I got hit with all the symptoms...so now thats been on hold for almost 6 years now.

I always feel there is nothing I can say when a woman reveals she's had to put hopes of pregnancy on hold. On the other hand, I think it's worse to 'politely ignore' the topic. I feel for you on this one. My husband left me with a 3 yr old and a newborn when my body broke down from the stress. It was too hard for him. I believe you will get your health under control and that will invite more positive 'happenings', including children. You will be Monumentaly prepared to raise them with good health.

Stress really is a 'killer'. It just destroys your body, inviting toxic invasion. You are right in saying our society bombards it's bodies with toxic chemicals. I had no idea until now. At my worst, I was drinking a 2L bottle of Diet Pepsi each day... I did that for years. Not to mention coffee, which I am still trying to kick.

I'm in touch with my N.D. re: looking into mercury tox and Lyme Dz. I'll need to find someone here in Sarasota area who is highly recommended... I do have a lead from someone on this board.

Tracy

[fedora]

Linda, No, your DQ6 gene is not one of the ones linked with Lyme arthritis Thanks for asking about the kids. Right now they are fine. My DD is okay with the gluten-free diet now. She accidentally ate some one day and the very next day had a sore in her mouth. She has been allergy tested for wheat,soy, dairy, egg... which were all negative. She said she thought the sore was from the gluten. Her mood is much better as long as she doesn't eat too much sugar, but that is a whole other issue, withdrawel My son is fine, his eyes don't bother him unless focusing up close. I am irratated cause neither dr. I have taken him too has been real helpful. Luckily his pain is not often.

Tracey, you didn't ask, but your DQ6 genes are linked to Lyme arthritis. You mentioned Lyme so I thought I would pass that on, though I don't recall if you have joint pain. I hope things improve for you, so sorry that things were so tough for awhile for you.

Rachel, I remember you said you had Lyme, but you had determined it was not a big issue right now. I am glad. I am glad you are feeling better, you had a real rough time there for awhile. so sorry for all of that.

My genes are not linked to Lyme arthritis, but I do have problems, mostly with my spine and shoulder(because of my spine). My DR says it is genetic, it could explain my sons problems. That would be so unfortunate. If that is true, I will have to work on my skeletal system the rest of my life with PT, chiropractor, yoga,deep tissue massage. But that is better than being pain.

One thing that is being repeated here is stress. Stress was a huge factor in my life too. At times of terrible stress I was at my worst. AT 9-13 years old and 25-28 years old were the worst for me and I had lots of stress.

This winter was really bad for me but my stress was not at it's worst. What was happening is I was eating more wheat and cheating on my wheat free diet.

take care,

fedora

[linda7276]

Linda, No, your DQ6 gene is not one of the ones linked with Lyme arthritis Thanks for asking about the kids. Right now they are fine. My DD is okay with the gluten-free diet now. She accidentally ate some one day and the very next day had a sore in her mouth. She has been allergy tested for wheat,soy, dairy, egg... which were all negative. She said she thought the sore was from the gluten. Her mood is much better as long as she doesn't eat too much sugar, but that is a whole other issue, withdrawel My son is fine, his eyes don't bother him unless focusing up close. I am irratated cause neither dr. I have taken him too has been real helpful. Luckily his pain is not often.

Tracey, you didn't ask, but your DQ6 genes are linked to Lyme arthritis. You mentioned Lyme so I thought I would pass that on, though I don't recall if you have joint pain. I hope things improve for you, so sorry that things were so tough for awhile for you.

Rachel, I remember you said you had Lyme, but you had determined it was not a big issue right now. I am glad. I am glad you are feeling better, you had a real rough time there for awhile. so sorry for all of that.

My genes are not linked to Lyme arthritis, but I do have problems, mostly with my spine and shoulder(because of my spine). My DR says it is genetic, it could explain my sons problems. That would be so unfortunate. If that is true, I will have to work on my skeletal system the rest of my life with PT, chiropractor, yoga,deep tissue massage. But that is better than being pain.

One thing that is being repeated here is stress. Stress was a huge factor in my life too. At times of terrible stress I was at my worst. AT 9-13 years old and 25-28 years old were the worst for me and I had lots of stress.

This winter was really bad for me but my stress was not at it's worst. What was happening is I was eating more wheat and cheating on my wheat free diet.

take care,

fedora

Hello Fedora, and thank you so much. I'm glad your kids are doing well. We can all certainly relate to how difficult it can be to stay away from Gluten. I find it incredible that wheat is such a toxic grain to so many, and I'm glad to finally know, that it played a big part in my symptoms. Now I'm reading all that I can about Lectins. And will be anxious to get my food allergy test results back. Waiting is always the hard part.

It makes me think about everything I put in my mouth now. If there wasn't such a major difference in the way I feel I wouldn't worry as much. But I never want to go back there. It has to be so hard on kids to have to deal with not being able to eat the things they love and they see their friends eat. But it could be so much worse too.

Forgive my ignorance, but I'm assuming the variation in the DQ6 genes, or any genes for that matter, depend on where they are located, is that right? I read some of the stuff on wikipedia but that is not my forte!

Speaking of cheating on your diet...wink...I had sugar yesterday....I just couldn't take it anymore, and then I read the wrapper and it said it MAY have soy in it....and I'm allergic to soy so I would not have done that. It was swiss chocolate...why would there be soy in that, unless it was soy lecithin, in which case that might be ok.

Thanks again Fedora Linda

[fedora]

hey,

there is some slight genetic differences in the genes even of the same DQ, but I don't know how becuase I have not looked into that. In an alternate version of myself I am a scientist. But in this version I just get to google. I use wikipedia alot because their tables are easy to read and their info is well organized.

Open Original Shared Link has a chart with the different DQ variations and what DR-variation they are on. I look up the DQ then see its DR type. Then there is a chart with the DR relationships with what diseases

I looked up DQ6 with the B(beta) 0604:

You are DQ A0102 B0604 (DQ6) which is DR13. DR 13 in their charts is linked to Myasthenia gravis (but you already knew that.

Your DQ7 gene is more confusing. When you look up DQ 7 with the Bpart 0301, there are a few alpha possibilities. Enterolab does not tell the alpha part of the gene, so it is unclear which one you have. The possibilities are DR4, DR8, DR11, DR12, or DR13! DR11,12,and 13 are half of the celiac gene DQ2. That is a lot of possibilities.

DR4 is linked to lyme induced arthritis!!!! so you could maybe still have that link. Too bad enterolab doesn't test the alpha part of the gene too.

I have DR7-(my DQ2.2 gene)-T. cruzi induced cardiomyopathy(????) and vulgaris psoriasis,

My other gene DQ B0501(DQ5) is either DR1 or DR10, cant tell without the alpha info. DR1 is linked to a bunch of bad stuff. Hopefully mine is DR10! But I know that it just helps me see possibilities and of course(thank Heavens) I don't have all that stuff.

I just found out last night I had a great aunt who died from prenicious anemia in her early twenties. so sad. I can't help but wonder if she had celiac. It was a really long time ago, eighty years ago.

[linda7276]

I guess my documentation is all right here on this board...well, mostly in the pages of the OMG thread. I posted everything as I learned it...as well as all of my experiences, doctor appts, treatments, etc. So if I forget something its all there.....I just have to find it in a search.

Rachel...the information you've compiled is very impressive!! I'm thinking you should be copying and pasting a lot of these things in your word processer as you go along, to get your book started. Then you can begin categorizing chapters, adding to and taking from, noting sources, etc.. I believe everything happens for a reason, and the information you've collected has been for a very good reason. It will be a big undertaking and that's why I think you should start now...

The research has been like a fun "project" for me....I dont know why but I found it exciting.

I understand what you mean, I've always loved medical stuff too, that's what led me to be a nurse, I actually wanted to be a doctor but I knew I didn't have the physical stamina needed to function in the residency, taking call for days at a time, so I settled for being a nurse, and I'm glad I did.

But now everything is different....and life actually has more meaning. I appreciate things more than I ever had, and I have more compassion for others...so lots of good has come out of it.

Out of bad comes good. Some of our greatest lessons come from this kind of thing. Some people withdraw, and follow along the already traveled path, and just take their medicine everyday, no rocking the boat, just going along...and the doctors probably love that too, but you want to know why...how can it be fixed, and all of this research you're doing is a wealth of information. Who knows where the road will end up...life has a way of taking us to places that aren't even on the map...to places we never thought we'd go....and I believe you're on your way to one of them.

And I'll be able to say I knew her when.....

[linda7276]

hey,

there is some slight genetic differences in the genes even of the same DQ, but I don't know how becuase I have not looked into that. In an alternate version of myself I am a scientist. But in this version I just get to google. I use wikipedia alot because their tables are easy to read and their info is well organized.

Open Original Shared Link has a chart with the different DQ variations and what DR-variation they are on. I look up the DQ then see its DR type. Then there is a chart with the DR relationships with what diseases

I looked up DQ6 with the B(beta) 0604:

You are DQ A0102 B0604 (DQ6) which is DR13. DR 13 in their charts is linked to Myasthenia gravis (but you already knew that.

Your DQ7 gene is more confusing. When you look up DQ 7 with the Bpart 0301, there are a few alpha possibilities. Enterolab does not tell the alpha part of the gene, so it is unclear which one you have. The possibilities are DR4, DR8, DR11, DR12, or DR13! DR11,12,and 13 are half of the celiac gene DQ2. That is a lot of possibilities.

DR4 is linked to lyme induced arthritis!!!! so you could maybe still have that link. Too bad enterolab doesn't test the alpha part of the gene too.

I have DR7-(my DQ2.2 gene)-T. cruzi induced cardiomyopathy(????) and vulgaris psoriasis,

My other gene DQ B0501(DQ5) is either DR1 or DR10, cant tell without the alpha info. DR1 is linked to a bunch of bad stuff. Hopefully mine is DR10! But I know that it just helps me see possibilities and of course(thank Heavens) I don't have all that stuff.

I just found out last night I had a great aunt who died from prenicious anemia in her early twenties. so sad. I can't help but wonder if she had celiac. It was a really long time ago, eighty years ago.

Thanks Fedora, I really appreciate your help and that link. I copied and pasted your email too...I'll go to the link and read v e r y s l o w l y . Because I can be so dense when it comes to that kind of stuff.

And yes it would be nice if Entero Lab included the alpha genes, I wonder why they don't. I'm supposed to have a phone consult with his nurse one day this week. I'll ask about that. I get a free 15 minutes, and anything over 15 minutes includes a charge. Dr Fine doesn't do phone consults anymore.

Eighty years ago they knew so much less, it does sound suspect though doesn't it. Can you imagine being alive then. No thanks!! I am definitely a city girl, who likes all the conveniences...

[linda7276]

Linda,

I wanted to thank you for all your words of encouragement.

Without the support of people on this forum (especially those who have posted in the OMG thread over the past couple years) I would definately not have been as strong and as determined as I've been. I gained alot of strength from the the friends I've met here. I dont think I'd be where I'm at now if not for this place and all of the people who are here offering support and encouragement.

...and I'm glad you found us.

Thank you Rachel I meant everything I said!! I am (as I'm sure so very many are), grateful for all that you do, and share with us...and I'm glad I found this board too..it is really good to talk to others who know how you feel. For so many years, I didn't have that, so I'm delighted to meet you and Fedora, Ursa Major sent me some very good links, and all who frequent these pages, its good to lift each other up whenever we can.

[nora-n]

It is because enterolab does not do its own genetic testing. Dr. Lewey lists which tests are run by which labs.

I searched on pubmed and there is this rapid celiac gene test that tests both the alpha and beta chains for DQ2 and the beta chains for DQ8. Kimball does that one, as well as the lab that tested me (genetic and transplant lab at Rikshospitalet, I figured from teh description that they use this rapid DQ2-and DQ8-test that should find half DQ2 too. Open Original Shared Link

(I learnt from another posting here that the DQ8 beta chain test is not 100% accurate as this person here phoned Kimball and qestioned that her results were negative, her being officially diagnosed with biopsy and blood tests that were high in numbers and many relatives have a diagnosis too. They sent the sample to a bigger lab and it was DQ8 after all.)

The other labs use some other tests to test for all DQ types in the beta chains.

https://www.celiac.com/articles/1046/1/Unde...ewey/Page1.html

[linda7276]

It is because enterolab does not do its own genetic testing. Dr. Lewey lists which tests are run by which labs.

I searched on pubmed and there is this rapid celiac gene test that tests both the alpha and beta chains for DQ2 and the beta chains for DQ8. Kimball does that one, as well as the lab that tested me (genetic and transplant lab at Rikshospitalet, I figured from teh description that they use this rapid DQ2-and DQ8-test that should find half DQ2 too. Open Original Shared Link

(I learnt from another posting here that the DQ8 beta chain test is not 100% accurate as this person here phoned Kimball and qestioned that her results were negative, her being officially diagnosed with biopsy and blood tests that were high in numbers and many relatives have a diagnosis too. They sent the sample to a bigger lab and it was DQ8 after all.)

The other labs use some other tests to test for all DQ types in the beta chains.

https://www.celiac.com/articles/1046/1/Unde...ewey/Page1.html

Hi Nora, I was just reading Dr Scot Leweys article too, so the timing of this post is wow!! I was looking into the Kimball labs too, so kind of nice to know about a false negative, if I'm understanding you correctly.

I just got off the phone with the nurse at Entero Lab, I wanted to talk about my genes, and ask about the Alpha gene and why they don't test for that. This is what I was told. Oh, first of all, Dr Fine is hoping to publish his article before the end of the year, hopefully in the next few months. But she said that the Alpha testing would be a waste of time for me, because I don't have the Beta 0201, so I will not have the Alpha 05 which is the other half. And I do NOT have the Celiac gene but two genes that are Gluten Sensitive. Anyway that made sense to me.

So if you have the Beta 0201 you might want to get the Alpha testing, but if you don't have it, it's a waste of money. I know I'm gluten sensitive firstly because of how much better I feel off of the gluten, the testing is nice because it confirms it, so I'm comfortable with it.

I hope I haven't added to the confusion and if someone knows different, it would be nice to hear about that.

[nora-n]

I am thinking of trying to get a test by enterolab, and trying to figure out how on earth do ship the test kit to them---checking UPS and DHL and Fed Ex. I sent an email to enterolab to tell me more, they ought to know how to send stuff from europe.....

I already know I am not DQ2, and there is a chance in a thousand (or unknown) that I am DQ8.

What Lewey and the other references from pubmed say, is that a lot have half DQ2 genes and some celiacs are DQ1 (half a DQ5?) (two cases in Spain and two in estonia or wherever that was) (and some are DQ7 in Sardinia and some japanese celiacs are DQ9 since that is a very common gene there.

So if you have been tested by Kimball first, you already know if you do or do not have half a DQ2 gene, but if not, then enterolab will not find out that you are half DQ2 in my reasoning......just like Lewey says.

But you need the enterolab test to find out if you are any other genes than DQ2 or 8.

I already know I am not half DQ2 by reasoning and checking out my lab's website, it says they test for alpha chain and beta chain for DQ2 and beta chain for DW8 (though I found out that the Dq8 test is not perfect)

Open Original Shared Link If you scroll down here he says:

"I have a couple of patients who have the specific blood tests for celiac disease, endomysial and tissue transglutaminase antibody, and the classic biopsy features that were reported DQ2 and DQ8 negative by laboratories who only test for the beta subunit. Re-testing for alpha unit positive “half” DQ2 or DQ8 is being requested on these patients. However, I am deeply concerned that many patients and doctors may have been lulled into a false sense of security or diagnoses of Celiac disease may have been withdrawn on some individuals based on incomplete genetic results.

The issue of DQ2 and DQ8 testing is further complicated by reviews on the subject that are incomplete or vague. The best reviews I have found are by Ludvig Sollid and Benedicte Lie of Oslo, Norway “Celiac Genetics: Current Concepts and Practical Applications” Clinical Gastroenterology and Hepatology 2005 and Bourgey’s 2007 review. In a recent update article by Victorien, there is a general review the genetics of celiac disease including the association of myosin IXB gene (MYO9B). However, it doesn’t explain the DQ2 or DQ8 typing well. They conclude that “To date, only HLA-DQ2 or HLA-DQ8 typing is clinically relevant…” but fail to point out that HLA DQ2 and DQ8 typing should include both alpha and beta subunits.

"

nora

[Rachel--24]

They conclude that

[fedora]

I never got bloodwork or biopsy. I had been on a mainly wheat free diet for years. I went gluten free before I ever knew much about celiac or testing. I did know I was NOT EVER going back on gluten for a long enough time for testing. so I did Enterolab.

My genes are DQ2.2 and DQ5.

My DQ2.2 gene is a half celiac gene. The beta part is 0202. It is always only half of the gene.It HAS been proven in lab research to cause gluten intolerance but not normally to the amount to cause celiac.

The DQ2.5 gene has a beta part of 0201. It is always the DQ2 celiac gene.

DQ7 is different. Some DQ7s are half the celiac gene, others are not. You HAVE to know the alpha part to know if it is or not. You can not tell based on the beta part.

If someone had DQ2.2 and a DQ7 from Enterolab, then that person could get further testing to determine if the DQ7 gene is the half celiac gene. because if it is, then they have the full celiac gene. The two come together to make the celiac gene DQ2.5. Definately worth knowing the alpha part in these cases.

After DQ2.5 and DQ8, then DQ2.2 and then those specific DQ7s are the most occuring in those with celiac. In one study DQ2.5 and DQ8 made up 94%, DQ2.2 made up 4% and the specific DQ7 that are the half celiac gene made up 2% of celiacs.

I do not have the other DQ7 also. So I don't have the complete gene.

It is hard for me in some ways because I don't know what my tests would have shown if I had had bloodwork years ago...now I will never know. I was hoping for a clear answer with the gene test, I did not get it.

so maybe I am gluten intolerant, maybe I am celiac, maybe I would have eventually developed celiac if I was on a normal diet. ????????????????

I can look at my family history and see that celiac is a possibility-from either side.

to recap, retesting after doing Enterolab to see if you have a half celiac gene is only necessary with DQ7 genes.

DQB0202 is always the half celiac gene DQ2.2 because there is only that one gene with that beta part.

DQ2.2 and the right DQ7 gene together in the same person make the full celiac gene.

On a personal note, My finger itched soooooo bad this morning I wanted to bite it to make it hurt. Thank God for cortizone!!!!! It think it is from eating sooooo much fruit and eating more sugar lately. yuck, candida? My hand rash(99% better than when I ate wheat) is definately allergy and/ or intestine linked. But I am a country girl, and my raspberries are ripe and the cherries are everywhere. so I am cutting out sugar at least.

[linda7276]

I never got bloodwork or biopsy. I had been on a mainly wheat free diet for years. I went gluten free before I ever knew much about celiac or testing. I did know I was NOT EVER going back on gluten for a long enough time for testing. so I did Enterolab.

My genes are DQ2.2 and DQ5.

My DQ2.2 gene is a half celiac gene. The beta part is 0202. It is always only half of the gene.It HAS been proven in lab research to cause gluten intolerance but not normally to the amount to cause celiac.

The DQ2.5 gene has a beta part of 0201. It is always the DQ2 celiac gene.

DQ7 is different. Some DQ7s are half the celiac gene, others are not. You HAVE to know the alpha part to know if it is or not. You can not tell based on the beta part.

If someone had DQ2.2 and a DQ7 from Enterolab, then that person could get further testing to determine if the DQ7 gene is the half celiac gene. because if it is, then they have the full celiac gene. The two come together to make the celiac gene DQ2.5. Definately worth knowing the alpha part in these cases.

After DQ2.5 and DQ8, then DQ2.2 and then those specific DQ7s are the most occuring in those with celiac. In one study DQ2.5 and DQ8 made up 94%, DQ2.2 made up 4% and the specific DQ7 that are the half celiac gene made up 2% of celiacs.

I do not have the other DQ7 also. So I don't have the complete gene.

It is hard for me in some ways because I don't know what my tests would have shown if I had had bloodwork years ago...now I will never know. I was hoping for a clear answer with the gene test, I did not get it.

so maybe I am gluten intolerant, maybe I am celiac, maybe I would have eventually developed celiac if I was on a normal diet. ????????????????

I can look at my family history and see that celiac is a possibility-from either side.

to recap, retesting after doing Enterolab to see if you have a half celiac gene is only necessary with DQ7 genes.

DQB0202 is always the half celiac gene DQ2.2 because there is only that one gene with that beta part.

DQ2.2 and the right DQ7 gene together in the same person make the full celiac gene.

On a personal note, My finger itched soooooo bad this morning I wanted to bite it to make it hurt. Thank God for cortizone!!!!! It think it is from eating sooooo much fruit and eating more sugar lately. yuck, candida? My hand rash(99% better than when I ate wheat) is definately allergy and/ or intestine linked. But I am a country girl, and my raspberries are ripe and the cherries are everywhere. so I am cutting out sugar at least.

Good morning Mebyne,

I

[fedora]

Hey Linda,

In my case of DQ2.2 there is ONLY one variation so I already know the alpha part of the gene. I looked my gene DQB0202 up on Wikipedia, there is only one variation and there is the alpha and beta info for me. The other genes have way more variations. DQ2 does not for some reason. Only 3 and the beta parts are all different.

For me I want a more definite answer because of the internal cancer risks associated with celiac. Don't get me wrong, I will never eat gluten again, but if I don't have celiac I would be less OCD about cross contamination and such. I am fanatic. And well it makes life hard. I have symptoms that are very unpleasant and hinder life, the worst being depression, mental symptoms, and getting sick when using the bathroom. So no, the genes don't matter in whether I eat gluten or not,

BUT at the same time, if my gluten sensitivity were caused by something else that I could fix, I would want to know that and fix it. I agree with Rachel in that alot of gluten sensitivity is caused by some other issue. I feel like my genes could cause gluten intolerance, but I don't know if I would feel that way with other genes. Nor am I 100% that it is not caused by something else. I do have symptoms still, but I am not sure if it is because I am still healing or it is something else. I do know going off gluten was a huge huge relief for me. Even if I found something else and fixed it, I would be to afraid to try gluten again.

Take care,

Mebyne

[linda7276]

Hey Linda,

In my case of DQ2.2 there is ONLY one variation so I already know the alpha part of the gene. I looked my gene DQB0202 up on Wikipedia, there is only one variation and there is the alpha and beta info for me. The other genes have way more variations. DQ2 does not for some reason. Only 3 and the beta parts are all different.

For me I want a more definite answer because of the internal cancer risks associated with celiac. Don't get me wrong, I will never eat gluten again, but if I don't have celiac I would be less OCD about cross contamination and such. I am fanatic. And well it makes life hard. I have symptoms that are very unpleasant and hinder life, the worst being depression, mental symptoms, and getting sick when using the bathroom. So no, the genes don't matter in whether I eat gluten or not,

BUT at the same time, if my gluten sensitivity were caused by something else that I could fix, I would want to know that and fix it. I agree with Rachel in that alot of gluten sensitivity is caused by some other issue. I feel like my genes could cause gluten intolerance, but I don't know if I would feel that way with other genes. Nor am I 100% that it is not caused by something else. I do have symptoms still, but I am not sure if it is because I am still healing or it is something else. I do know going off gluten was a huge huge relief for me. Even if I found something else and fixed it, I would be to afraid to try gluten again.

Take care,

Mebyne

Yeah, I do understand how you feel, completely!! And I hope you find your answers. I agree with you that it is difficult. I am afraid to eat out anymore at all, and that's no fun either. I also agree with Rachel too, and think this problem is multifaceted....you know, which came first the chicken or the egg.

I think that something in the legislature should change to allow us to have more sayso (I made a new word, I'm sure it will be unacceptable in Websters dictionary..haha) in our healthcare. So many struggle just trying to get things done, that should not be.

What was your first clue that gluten was a problem for you. I can't believe that I never thought of that, and I think it's because we've been brainwashed about grains...and esp. whole grains being so good for us...grrrr!!! They just make you a whole lot sicker, that's all....

Take care, Linda

[nora-n]

Yes, it is true what fedora says, that DQ2 can be made up different ways. DQ2 is very prone to celiac. (meaning that if you have all the symptoms , and respond well to eating gluten-free, you probably are celiac.

I guess I'm confused as to why the alpha and beta subunits are important now......even though Celiac is not ever diagnosed on gene results alone?? And with such a small percentage actually testing positive for Celiac without a main gene....it just doesnt seem all that relevant.

As it is right now.....Dr.'s generally do not diagnose Celiac just because someone carries the DQ2 or DQ8 gene. So I doubt that they would diagnose Celiac based on alpha and beta subunits in the absence of positive bloodwork/biopsy.

Maybe I'm missing something??

I can see where it would be important if bloodwork and/or biopsy is positive and a doctor is not diagnosing based on negative gene testing....but typically people are diagnosed when the tests are positive (unless they have a really ignorant doctor).

Most people here who do not have the main genes...are also not testing positive in bloodwork or biopsy. So why would it it make a difference if they were found to have a half gene that in rare cases is linked to Celiac??

I guess thats the part I'm confused about.

In my case, the Gi who I was sent to has worked at Rikshospitalet, the place where Lundin and Sollid (prominent celiac gene researchers) work. He read the articles by them and got the distinct impression that one absolutely 101% can prove that the person is not celiac when the gene test for DQ2 or DQ8 is negative. That happened to me. Dr. Lewey comments specifically on Lundin and Sollid's article about that (same article that my GI bases his decision on) in his blog.

So my doctor absolutely believes that it is all in my head, that I do not have any celiac symptoms, that for example my increased need for thyroid meds after the gluten challenge were psychological, that when I halved my thyroid meds off gluten , is purely in my mind, my mind tricked me into believing that, that my huge brain fog while on gluten was depression, that I am very depressed (he threw some strong medicine at me which I tried for a couple of weeks to humor him but I did not get better because nothing was wrong with me in the first place) That when I flunked clinical rotation in nursing school (because of stress and differnt shifts with too little sleep between, including night shifts that are hard for me in the first place) that triggered celiac, it was typically a depression in his mind since I cannot possibly be celiac with those genes, and the fact that my dauhter was diagnosed during that ime with celiac just proves it is my nerves....

That is why I have to decipher the gene bit and find all references in pubmed of diagnosed celiacs with other genes. Here and many other places they even would take away people's diagnosis even with positive biopsies if they do not have DQ2 or 8.

There was someone mentioned here a couple of years ago where a mayor American hospital took away some-one's official diagnosis because a gene test some years later showed DQ6....

(and money: If we have a positive diagnosis here, we get about 350 dollars a month.....)

nora

[linda7276]

Yes, it is true what fedora says, that DQ2 can be made up different ways. DQ2 is very prone to celiac. (meaning that if you have all the symptoms , and respond well to eating gluten-free, you probably are celiac.

In my case, the Gi who I was sent to has worked at Rikshospitalet, the place where Lundin and Sollid (prominent celiac gene researchers) work. He read the articles by them and got the distinct impression that one absolutely 101% can prove that the person is not celiac when the gene test for DQ2 or DQ8 is negative. That happened to me. Dr. Lewey comments specifically on Lundin and Sollid's article about that (same article that my GI bases his decision on) in his blog.

So my doctor absolutely believes that it is all in my head, that I do not have any celiac symptoms, that for example my increased need for thyroid meds after the gluten challenge were psychological, that when I halved my thyroid meds off gluten , is purely in my mind, my mind tricked me into believing that, that my huge brain fog while on gluten was depression, that I am very depressed (he threw some strong medicine at me which I tried for a couple of weeks to humor him but I did not get better because nothing was wrong with me in the first place) That when I flunked clinical rotation in nursing school (because of stress and differnt shifts with too little sleep between, including night shifts that are hard for me in the first place) that triggered celiac, it was typically a depression in his mind since I cannot possibly be celiac with those genes, and the fact that my dauhter was diagnosed during that ime with celiac just proves it is my nerves....

That is why I have to decipher the gene bit and find all references in pubmed of diagnosed celiacs with other genes. Here and many other places they even would take away people's diagnosis even with positive biopsies if they do not have DQ2 or 8.

There was someone mentioned here a couple of years ago where a mayor American hospital took away some-one's official diagnosis because a gene test some years later showed DQ6....

(and money: If we have a positive diagnosis here, we get about 350 dollars a month.....)

nora

Wow Nora that is awful!!!!!!!!!!!!!!!! I'm sorry you went through that. Can you go to another doctor?

I gave up on doctor's years ago, yes there are good ones, but they are rare. My doctor now is wonderful and I love him!! But years ago when I was bone thin, pale, tired, and weak, they treated me as if it was in my head and told me I was anorexic....after a while of hearing that I gave up. I feel for you...hang in there. I hope you can get the answers you need. Linda