Confusing Gene Test Results!

[alanalynch]

I am brand new to this website so if I mess it up I apologise!

I noticed quite a few people on this site have used Enterolab before and wondered if anyone else had had the gene tests done. I did and I am totally confused as to what they mean!! My results were;

Molecular analysis: HLA-DQB1 0603, 0301

Serologic equivalent: HLA-DQ 1,3 (subtype 6,7)

'HLA gene analysis reveals that you have a genotype that predisposes to gluten sensitivity (HLA-DQ1,3 especially that involving DQB1 0301)'

At first glance they seem to mean I am predisposed to gluten sensitivity, yet I was looking on the internet and if you don't have the gene type HLA-DQ2 you can't actually get celiacs....ever!!

Does this mean I am actually immune to it?? If so, how can I be sensitive to gluten?? Maybe this website I was reading, which I can't even find now but was written by a bunch of specialist doctors, was rubbish.

I am very confused, I hope someone out there has more knowledge on this!!

[Rachel--24]

At first glance they seem to mean I am predisposed to gluten sensitivity, yet I was looking on the internet and if you don't have the gene type HLA-DQ2 you can't actually get celiacs....ever!!

Does this mean I am actually immune to it??  If so, how can I be sensitive to gluten??

<{POST_SNAPBACK}>

No...it doesnt mean you're immune to Celiac. It just means that you dont carry the main Celiac genes so the chances of you developing villi damage that can be seen in the biopsy are pretty slim. You do carry Gluten Sensitivity genes which means if you're results were positive then you should remain gluten free.

Were your results positive or did you only have gene testing done?

It doesnt really matter whether you have Celiac or Gluten Sensitivity since they both cause damage to the body...the only treatment for either one is the gluten-free diet.

[Nevadan]

You might want to check out this website: Open Original Shared Link

They focus more on non-celiac disease gluten sensitivity.

Also you might want to read "Dangerous Grains" by Braly & Hoggan (~$10 @ Amazon) It has quite a bit of discussion on non-celiac disease gluten sensitivity.

Hope this helps.

George

[alanalynch]

No...it doesnt mean you're immune to Celiac. It just means that you dont carry the main Celiac genes so the chances of you developing villi damage that can be seen in the biopsy are pretty slim. You do carry Gluten Sensitivity genes which means if you're results were positive then you should remain gluten free.

Were your results positive or did you only have gene testing done?

It doesnt really matter whether you have Celiac or Gluten Sensitivity since they both cause damage to the body...the only treatment for either one is the gluten-free diet.

<{POST_SNAPBACK}>

Thanks for replying Rachel. I didn't realise there were different levels of gluten intolerance, and I am actually quite glad I have this milder version! I had been worried about intestinal damage as I have to admit I'm not exactly the strictest gluten free eater...(pizza pizza gets me everytime) however I am working on changing this bad habit as it always looks so damn good in the box, yet feels absolutely horrible 20 mins later!!

I did have all the tests done (stool, casein etc) with Enterolab and they came back positive for gluten/casien sensitivity, and before that I had blood tests in Australia (where I'm from originally) to see why my B12 was so low (plus I suffered unexplainable anxiety) and it was a fluke I tested positive for gluten intolerance. My doctor told me not to eat gluten anymore, (she was really quite casual about it) but I guess once I realised what that actually meant I went into denial and needed more convincing, which is where Enterolab came in. So now I guess I'm back trying to find more reasons not be gluten sensitive. You have to give me credit for trying!!

This forum is great though, I have had absolutely no support or info since being diagnosed and my current doctor here in Toronto told my pharmacist I was 'glucose' intolerant. So my last antibiotics made me horribly sick until I spoke to the pharmacist and he was pretty surprised. The tablets I were on were full of gluten! So its been a daily trial.

[Nevadan]

Thanks for replying Rachel.  I didn't realise there were different levels of gluten intolerance, and I am actually quite glad I have this milder version!  I had been worried about intestinal damage as I have to admit I'm not exactly the strictest gluten free eater...(pizza pizza gets me everytime) however I am working on changing this bad habit as it always looks so damn good in the box, yet feels absolutely horrible 20 mins later!! 

<{POST_SNAPBACK}>

alanalynch,

I hate to be the bearer of bad news; however the idea that there are milder versions/levels of gluten sensitivity is not accepted by the leading researchers today. Gluten sensitivity presents itself with different symptoms/illnesses in different people - some have the intestinal problems while other seem to have more neurological problems (anxiety comes to mind) such as ataxy, peripheral neuropathy, etc. They are all bad. All tend to lead eventually to various undesirable autoimmune diseases. The scary part is that while the intestinal manifestations can usually have full recovery with a gluten-free diet, many of the neurological problems are irreversible - gluten-free can slow or stop their progress but not provide recovery.

Also cheating on a gluten-free diet is like not even attempting it. I think the latest testing confirms that one small cheat per month is about the same as not being gluten-free at all.

Take a look at my earlier post to your thread and check out some of those references for further info on the neurological implications.

For you own sake, I wish you the best of success on your gluten-free diet.

George

[Rachel--24]

Thanks for replying Rachel.  I didn't realise there were different levels of gluten intolerance, and I am actually quite glad I have this milder version! 

<{POST_SNAPBACK}>

Ummm...I don't mean to disappoint you but its not necessarily a "milder" form of gluten intolerance. It can still cause you serious health problems including autoimmune diseases. It can also still damage the intestinal wall....its just not likely to cause the same villi damage that is seen in a Celiac but it is not a "milder" version. You can become just as sick or even sicker than a person with Celiac. I have genes similar to yours and I was off work on disability for 2 years while doctors tried to figure out what was wrong. Toward the end I wasnt able to get out of bed and I was nearly suicidal from the pain and depression. After 4 weeks of the diet I was able to go back to work...I've been back 3 full weeks now. Here is a link about Non-Celiac gluten sensitivity.

Open Original Shared Link

I would recommend the book "Dangerous Grains". It really helped me to understand things better. Basically you need to treat this the same as if you had Celiac. (If your tests were positive)

Did you have the antibody and tTG test as well? Were they positive?

[alanalynch]

Did you have the antibody and tTG test as well? Were they positive?

<{POST_SNAPBACK}>

Thanks for your help Rachel and George. Yes I did have the antibody and tTg tests and they were positive. No malabsorption though.

Its strange hearing you mention what you went through before you were diagnosed, I went through pretty much the same things. Anxiety, feeling terrible, not able to work. My doctors kept telling me it was all in my head and sending me to endless therapists. Each time I'd tell them I really didn't feel well and that I wasn't making it up they'd put me on another anti-depressant. I became so sick at one point that I actually looked dead! My father flew over from NZ (where I grew up) and was absolutely horrified. However they managed to convince him that I was just having some kind of breakdown and that maybe I needed drug rehab....for the drugs they put me on!!!!!.

My husband however was more skeptical and really did wonder if they knew what they were doing. I mean, I was on so many drugs I don't think I ate anymore, just popped pills. So after taking zoloft, effexor, ciprimil, paxil, lexapro, lorazepam, valium, prozac, buspar, zantac and two others I can't even remember, the doctor asked if I wanted to try Xanax as well and my husband went nuts. He phoned the doctor and blew up at him. I think we were both just so fed up. In the end it was my ridiculously low B12 that triggered a fluke blood test that showed up the gluten sensitivity.

However its not until reading other peoples experiences that I realise there was a connection between my anxiety etc and eating gluten. (I don't have anxiety anymore which is wonderful) however I'm still skeptical, probably because they practically beat it into me that it was all in my head. I still get pretty angry at the 3 years I lost, but I guess its just not worth it.

[Rachel--24]

I lost 3 years running from doctor to doctor as well. They didnt help me and of course just wanted me to see a shrink and an antidepressant would magically fix everything. I only tried Prozac for 2 months and it didnt do anything for me...I didnt really think it would since I knew whatever was going on wasnt in my head. I refused all the meds they were writing up for me. Eventually when I did go to the shrink she told me what I already knew. She could not help me because there was something physically wrong which no antidepressant was gonna fix. Turned out that the psychiatrist was the only doctor NOT trying to shove antidepressants down my throat. I changed my diet 1 week after seeing her and guess what....the depression left and never came back. I pretty much looked dead too...my Mom came and got me and brought me to her house. She was pretty shocked at how unclean my house was and I was a mess and only weighing 94 lbs. I'm doing much better now and my house is clean again.

[alanalynch]

It is so good you are doing well now too. I didn't even bother to weigh myself at the end there as I pretty much looked like a walking pencil. At 5'9" I really couldn't afford to lose the weight to start with. I am now however a healthy weight again and have actually gone back to study fulltime Interior Design at the ripe old age of 31! The way I figure it I'm still the age I was when I first got sick (27) so I'm living those lost years now.

Its insane though isn't it, that doctors let things get this bad before they check the most obvious causes first. I thought the saying was 'first do no harm'. When in fact all they did to me, and by the sound of it you too, was cause harm. You were so lucky with your psychiatrist though, she sounds really clued on. When I think about it though I did have one therapist who mentioned I might be having a possible reaction to caffeine, which is definately more than any of my doctors thought about. Thank goodness for Dr Fine!

By the way, my husband is bugging me to find out if you live anywhere near San Francisco. He is obsessed with the place and wants us to move there oneday. After having lived in New Zealand, Australia, England, back to Australia and now Canada whats one more stop!! Hey, maybe they have decent doctors. I have no idea of any in Toronto thats for sure.

[Rachel--24]

By the way, my husband is bugging me to find out if you live anywhere near San Francisco.  He is obsessed with the place and wants us to move there oneday.

<{POST_SNAPBACK}>

Yes...I do live near SF. I was born there and lived there when I was small. My Dad and brother still live there. I have friends there and as much as I love SF....I really have no desire to live there. I'm happy just visiting and I love the night-life, ball-games and shopping but then I love to go home where I can actually park in front of my house.

[alanalynch]

but then I love to go home where I can actually park in front of my house. 

<{POST_SNAPBACK}>

I hear you on that one. NZ is so much quieter than Toronto and you can even park two cars outside your house if you want to! Plus there are trees and clean air, something definately lacking in Toronto. But I do like the big cities. Although you would think the bigger the city the more clued on they would be about something like celiacs, yet nope, they were actually worse. It was a small town Australian doctor who took the blood tests. Oh well, at least with this forum I am finally getting some answers to the things that have been bugging me for months. Thanks for all your help with this.

[Nevadan]

One more suggestion: Take a look at this thread under celiac disease - Related Disorders...

Open Original Shared Link

The thread is long and gets better as it goes - lots of descriptions of neuro related effects of gluten.

George

[alanalynch]

One more suggestion:  Take a look at this thread under celiac disease - Related Disorders...

Open Original Shared Link 

The thread is long and gets better as it goes - lots of descriptions of neuro related effects of gluten.

George

<{POST_SNAPBACK}>

Thanks George, I'm going to check it out now.