For All The Gene Experts...

[Rachel--24]

My genes are HLA-DQB1*0301, 0501....translated as DQ3 (subtype 7) and DQ1 (subtype 5).

There is a very small percentage of biopsy proven Celiacs with DQ1 (without having DQ2 or DQ8). I am not in that group....although in the beginning I thought it was a strong possibility. I had very severe symptoms....they were mostly neurological but I did have GI issues as well.

I had a very high malabsorption score with Enterolab testing (912) as well as a 25 lb. drop in weight....which left me at 94 lbs.

Bloodwork and biopsy were negative and although there was some improvement on the diet I was nowhere near feeling healthy again. I also still had problems with malabsorption.

Ultimately, I had to eliminate a long list of additional intolerances and many of the symptoms have resolved. My diet is still very restricted. I can indulge a little here and there...but to do so on a daily basis would be to invite all of the symptoms back....which is not something I want to do.

DQ1 is more strongly associated with neurological symptoms rather than the GI symptoms. My neurological symptoms were disabling and the GI symptoms hardly noticeable in comparison.

I spent alot of time reading about DQ1 on the Braintalk forum (before it crashed) and from what I can recall it seemed like those having DQ1 also had to eliminate many foods in addition to gluten in order to feel better....and in many cases the health issues were not resolved....but simply "managed" by dietary changes.

I do not consider my health issues resolved (even if I have great days and am functioning quite well now)and I have never resigned myself to a life-long restricted diet of this magnitude. I've been very determined to restore my health so that my body can once again function the way that it should. My body *should* be able to handle food...and at some point it lost its ability to do that.

In the meantime I do what is necessary to keep those neuro. symptoms at bay. I'm not sure if its my DQ1 gene that is responsible for the severity of those symptoms....but I do know that I'm much happier without them!

6 months ago I reintroduced gluten. It might sound crazy but without doing a little experiementing now and then I would be much more "in the dark" about my health problems. What I have come to realize is that gluten (by itself) does not cause a return of those symptoms. It might be important to point out that I'm taking an enzyme designed specifically for autistic children to aid in the digestion of gluten and casein. I dont think I'd fare as well without the enzyme.

I still cannot eat the vast majority of foods that contain gluten (probably like 99%)...however, I still cannot eat the vast majority of gluten free foods either. I found that many factors (other than gluten) are involved in my inability to handle foods and the resulting symptoms.

Processing, naturally occuring chemical compounds, preservatives, additives, pesticides, mold content, etc. etc. All of these things can cause a return of those neurological symptoms but amazingly gluten does not. I know this because I've been eating it almost daily for 6 months now. Its only a few products that dont seem to have anything else in them which would cause my body distress. I eat those "safe" foods daily....and then when I'm out and those foods are not available I eat what is available...although there are alot of things that I would still avoid 100% because no amount is safe for me.

These are some of the questions I have regarding DQ1.

First, if anyone can offer some info. about my genes I'd certainly love to know more about them. I'm no expert on the genes and from what I've been reading some things have changed?? Any insight on this would be welcomed.

Second, of those with DQ1...I'm wondering what percentage actually resolves all of their health issues on the gluten-free diet alone?? Is there anyone?? Obviously plenty of people with the 2 accepted Celiac genes do not have to continue eliminating foods long after diagnosis. Many people with Celiac have a complete resolution of symptoms after having been on the diet long enough to heal (and this shouldn't take decades). How about those with DQ1??

In my own situation even though the foods trigger severe symptoms....it is not the foods themselves that are the true problem. Its whats going on with my body...the biochemistry. Underlying problems which have set the stage by interfering with normal metabolic processes. If things were still functioning as they should (without interference) my body would not be burdened by these food intolerances.

So, what if having the DQ1 gene makes us more susceptible to *other* factors which are totally unrelated to Celiac or gluten? Other factors which might play a role in the development of food intolerances....including gluten intolerance. As we know gluten and casein have the ability to cause severe neurological symptoms in those who are lacking the enzyme required for their digestion.

Autistic children for example are lacking this enzyme...in most cases it is inhibited (blocked) by other factors (heavy metals).

Isnt it possible that people with DQ1 are more susceptible to the things that can ultimately "switch off" enzymes which are neceassary for breaking down not only gluten and casein but other foods as well??

Autistic children can improve as much as 60% when following a gluten-free/cf diet...however this is not a "cure" for their condition.

Even though I'm functional now...and not suffering from the worst of the neurological symptoms...I do not consider myself to be "cured". I know that there is still alot of work to be done to repair the damage...not damage from the offending foods...but the imbalances in my body needs to be corrected in order for my body to function normally again.

So is there anyone here with DQ1 who has had severe neurological symptoms which have completely resolved on the gluten-free diet...with no remaining food intolerances or additional health problems?

[ShayFL]

I would like to know this too as I am in the same boat. 7 weeks gluten-free with no resolution of neuro symptoms. In fact I am in a pocket of worse symptoms at the moment. Anyone???

[Rachel--24]

I would like to know this too as I am in the same boat. 7 weeks gluten-free with no resolution of neuro symptoms. In fact I am in a pocket of worse symptoms at the moment. Anyone???

Do you know what your genes are?

[ShayFL]

HLA-DQB1 - Allele 1 - 0301

HLA-DQB1 - Allele 2 - 0602

The Enterolab Interpretations is confusing. I also had tests with Kimball and am negative for either Celiac gene.

Am I DQ1? DQ2?

[Rachel--24]

HLA-DQB1 - Allele 1 - 0301

HLA-DQB1 - Allele 2 - 0602

The Enterolab Interpretations is confusing. I also had tests with Kimball and am negative for either Celiac gene.

Am I DQ1? DQ2?

I dont know a ton about interpreting the genes but from what little I do know I'm guessing that you have DQ3 (subtype 7) which is the same gene I have...and you do not have DQ1.

I'm not sure which gene HLA-DQB1 - Allele 2 - 0602 is??

I'm sure somebody else can help with that one.

If you tested negative for Celiac genes then you wouldnt have a DQ2 or a DQ8.

[ShayFL]

Right! I do not have DQ2 or DQ8. I wasnt thinking straight. The genes are oh so confusing.

So I am DQ3 at least.

It says: Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

It thought that meant I was DQ3 and DQ1 ??????

[Rachel--24]

It says: Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

It thought that meant I was DQ3 and DQ1 ??????

Hmmm...maybe you are DQ1 (subtype 6)??

I was basing it on this info....

any HLA-DQB1*03xx [known as HLA-DQ3 (except 0302 ~this is the celiac gene known as DQ8, and is also known as DQ3, subtype 8)]

any HLA-DQB1*05xx [known as HLA-DQ1]

...but like I said...thee's alot I dont know about interpereting genes.

From what you posted it looks like Enterolab is saying that you're DQ3 and DQ1.

[holiday16]

Not sure how much it will help, but I have the same genes you do. Before going gluten-free I was having all kinds of issues many of them neurological. It started after I had my youngest dd 9 years ago and I was just diagnosed Nov. of 06 and have been gluten-free ever since. I had no other issues with food until a year later when dairy began to bother me and then 6 months after that potatoes and coffee. The coffee I can't have at all, but potatoes and dairy I can have in moderation after cutting them out strictly for a time. They don't cause any neuro issues, but more with the FM pain and fatigue.

After going gluten-free the neurological issues totally resolved and what was left fit the diagnosis very well for mild Fibromyalgia. That gave me the ability to see what I could do to help that and I now have it pretty much under control with very rare flares. Gluten will set off my FM to the point where I can barely walk so that was a factor as well and it's while being off gluten it is mild.

The one issue I have that has not resolved is water retention. It got much better after being off gluten and any gluten will make me swell. Lately I've been starting to retain more and more water which tells me something else is going on again. I did a test for heavy metals and am waiting on the results. I know that a sign that I have found the total answer will be when this edema is totally gone.

Recently I did have some tremors that were starting to come back when I knew I had not had any gluten. The NP I talked with said that the toxins from gluten can store in your body and begin to come out later causing symptoms similar to if you had gluten. She recommended taking a detox support when that happens and it has improved.

The one thing that has helped me tremendously is taking a supplement that raises your interferon levels naturally. I am doing much better on this and it makes me wonder how much of this is just related to an impaired immune system. That you're attacked by so many things, chemicals, additives, mold etc. and it affects your immune system and makes it malfunction if that makes sense. I was listening to a Dr. at a conference I was at and I think she said your immune system takes a million hits a day from different sources and that's why you have to give your body as much as you can to combat that. When you look at it that way it's a wonder anyone can handle it and that more people aren't sick.

[jerseyangel]

Rachel,

This is so interesting....I have a DQ2 gene and I think DQ1--I've never been completely sure about the second one.

As you know, I had a very hard time shortly after starting the gluten-free diet. I've had to remove many foods from my diet--plant proteins mostly, and am still extremely sensitive to cross contamination from gluten.

I suffered from both depression and anxiety before being diagnosed. The depression has lessened considerably, while the anxiety was slow to show improvement (18 months at least).

I still deal with anxiety, worse when having a reaction, after 3 years. I don't take anything for it, although I was prescribed Zoloft last year and stopped it due to side effects.

Thanks for this thread, I look forward to hearing from those who know more about the genes. It's very confusing, to say the least.

[Rachel--24]

The one issue I have that has not resolved is water retention. It got much better after being off gluten and any gluten will make me swell. Lately I've been starting to retain more and more water which tells me something else is going on again. I did a test for heavy metals and am waiting on the results. I know that a sign that I have found the total answer will be when this edema is totally gone.

Edema is one of my symptoms as well. It has never resolved but it can get much worse if I'm not careful with my diet. The first few years of my illness the fluid retention was pretty bad....at that time I was not on a restricted diet and I was not gluten-free.

I've been down to only a handful of foods....and at one point only 2 foods....however, the edema has never resolved completely. Certain foods which my body cannot metabolise will worsen the edema...however, in my case I dont think the situation would ever resolve without correcting certain imbalances caused by things other than food.

The few gluteney foods that I'm eating now are not worsening the edema...but they are free of so many other things which I'm intolerant of. I'm also taking the enzyme needed to digest gluten...so that could be a factor as well.

I agree that when my body is getting back into balance the edema will finally resolve.

I do have heavy metals at the root of my problems and I'm still in the early stages of treatment.

Its interesting that you mentioned the edema....I dont see it brought up very often. It might be that its less bothersome than some of the other symptoms. For me its always been worrisome....mainly because I know that things arent right. Prior to getting sick I'd never experienced edema.

The one thing that has helped me tremendously is taking a supplement that raises your interferon levels naturally. I am doing much better on this and it makes me wonder how much of this is just related to an impaired immune system. That you're attacked by so many things, chemicals, additives, mold etc. and it affects your immune system and makes it malfunction if that makes sense.

In my own situation I do know that the symptoms (including food intolerance) are a result of too many assaults on my immune system. Once the body burden gets too high the immune system can become overwhelmed. As toxicity increases within the body alot of things can get thrown out of balance. Impaired detoxification is a major factor in the development of chronic illness....immune dysfunction is often a result of the accumulation of toxins.

I was listening to a Dr. at a conference I was at and I think she said your immune system takes a million hits a day from different sources and that's why you have to give your body as much as you can to combat that. When you look at it that way it's a wonder anyone can handle it and that more people aren't sick.

This is all very true. We do take a million hits a day...we are assaulted by toxins everywhere. The immune system can deal with some of it....however, we all have a threshold. We do have to give our body whatever it needs to keep that toxic load from becoming too great.

As long as the immune system remains strong and as long as detoxification doesnt become impaired...we dont reach the point of chronic illness, food intolerance, leaky gut and all the rest.

This is where amalgams can have devasting effects on health...because you can do so many things to try to help your immune system but the constant exposure to mercury will often make a full recovery impossible. We can do alot of things...including eliminating offending foods...however for some of us new problems will continue to appear. If the immune system is bombarded with enough stressors (to the point where chronic illness becomes an issue) the biggest stressors have to be removed in order for the immune system to recover. Mercury happens to be one of the biggest stressors the immune system is faced with.

Genetics do play a role in how well we cope with certain toxins. I have DQ1 and DQ3 and my body did not deal with the heavy metals very well....especially mercury. I dont know if those particular genes would have any role in it...but I do know that people with these genes seem to have problems similar to my own. It doesnt seem to end with the removal of a few offending foods...although each burden lifted from the immune system does provide some relief...even if temporary.

I no longer have new problems popping up but I had all metals + a root canal removed a few years ago...and I am currently under treatment.

[jerseyangel]

Edema is an ongoing problem for me too. I never really connected it to the food intolerances.

[Fiddle-Faddle]

Aren't more doctors considering DQ1 as being celiac-specific?

Open Original Shared Link

and

Open Original Shared Link

among others.

Sorry, I'm in a rush--hope I didn't misread those!

[Rachel--24]

This is so interesting....I have a DQ2 gene and I think DQ1--I've never been completely sure about the second one.

Patti,

Do you still have your Enterolab results? It would be interesting to see if you also have DQ1.

I think I recall you posting them but I dont remember what they were.

As you know, I had a very hard time shortly after starting the gluten-free diet. I've had to remove many foods from my diet--plant proteins mostly, and am still extremely sensitive to cross contamination from gluten.

I think I've also read that people with DQ1 tend to be more sensitive to gluten. I cant really say this about myself now that I'm eating it on a regular basis....but I think the enzymes have everything to do with my increased tolerance. Otherwise, I dont think I'd be able to pull this off.

If the immune system is still heavily burdened (even after gluten-free) it would make sense that new problems would develop...and it also makes sense that cross contamination or other "hits" to the immune system will have more noticeable effects...and it may take longer to recover from those setbacks.

These are all of the things I'm wondering about with DQ1. I'm wondering if we get hit harder with the food intolerances and have more problems with ongoing symptoms because we are more susceptible to certain toxins?? If we cant deal with certain toxins (like mercury) as well as others...I would have to assume that the immune system never fully recovers...hence the ongoing problems that seem to be so common with DQ1.

[Rachel--24]

Aren't more doctors are considering DQ1 as being celiac-specific?

There has been talk of this for some years now....although so far it hasnt been recognized as a Celiac gene.

Of those with an official diagnosis of Celiac Disease (biopsy proven) the percentage of those with DQ2 or DQ8 is somewhere around 97%...maybe even higher. That leaves only a small percentage who do not carry the main genes....and some of those people without DQ2 or DQ8 do have DQ1.

I would not consider myself Celiac...there has been no evidence which would support a diagnosis of Celiac in my case. Gluten is one of many intolerances that I've been dealing with the past 5 years. It didnt cause my illness and removing it didnt solve my problems.

I dont know if there is *anyone* with DQ1 who had a complete resolution of symptoms while following a gluten-free diet only.

[jerseyangel]

Patti,

Do you still have your Enterolab results?

Yep--

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0502

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,5)

Enterolab's interpretation was that I had one Celiac gene and one gluten sensitivity gene--that's why I assumed that I had DQ1, as that's considered a gluten sensitivity gene.

[Rachel--24]

HLA-DQB1 Molecular analysis, Allele 2 0502

Yup....it looks like you do have DQ1.

I just now noticed that its in your signature.

So far all of the DQ1'ers have had ongoing symptoms which the diet didnt resolve.

We need more input though!

[confused]

I have dq1 and the gluten free diet did not take away all of my symptoms. Hence why I have been searching to what else is going on in my body. I really do think i have some sort of metal toxicity, just waiting for hair test to confirm this.

Im wondering if by having dq1, will keep people from ever being "normal" again. Will we ever be free from our toxicity? Will we only get better after treatment for a few months or years, then end up were we started from all over again.

I know if I have the tiniest bit ot gluten, my body goes crazy. My mood swings are uncontrolable. My gi symptoms have gotten better, but my neuro are just as bad as ever with gluten.

Rachel,

What enzyme are you taking again? Does it help with the gi issues or the neuro issues?

There is so much i want to say about everything discussed here, but im having trouble putting my thoughts in order right now.

paula

[Fiddle-Faddle]

The one logical flaw I see is that it seems that a lot of doctors are using the gene test to determine that a patient DOES NOT need an endoscopy. That would mean that there's a possibility that a lot of people who DO have damaged villi aren't even being examined. And of course, an endoscopy can be awfully hit-or-miss, even if you do have villi damage.

Then, there are conditions other than celiac that can cause villi damage--but villi damage is considered the gold standard diagnosis of celiac.

It's all ass-backwards, isn't it?

There's a blogger in the Bay Area (www.lunchinabox.net) who says her hubby was misdiagnosed with celiac, after becoming very ill, having an alarming drop in weight, severe intestinal problems, and a POSITIVE BIOPSY.

When he went to the celiac clinic at Stanford for a follow-up, they said he couldn't have celiac, as he didn't have the genes for it.

It seems, though, that they were actually right: he tested positive for some weird bacterial infection, and was cured by a few weeks of antibiotics. Last I heard, he was fine (and yes, eating gluten without a problem).

I remain unconvinced that you need DQ2 or DQ8, for celiac though. Maybe for a specific subset of celiac? And aren't a lot of the other DQs officially recognized as celiac-specific in Europe and Asia?

[ShayFL]

I hold on to hope. I was "normal" at some point, so I can be "normal" again. I refuse to give in or give up!

[ShayFL]

Is there a connection to DQ1 and MS? Im going to research that.

I am starting the MS recovery diet. I have not been dx MS, but I have a lot of the symptoms and truth be told, I do not want an official dx of a disease like that. I had MRI's and cat scans years ago that were fine. And 2 different neurologists. Im not going back anytime soon. But this diet made sense to me, so I will try it. Ive got nothing to lose.

Basically it is: No Gluten, No Dairy, No Legumes, No Eggs and No Yeast. Limited sugars. It also requires you to limit your saturated fat to around 15 grams a day. It is the fat that I have the most problems with adhering to. Even a handful of nuts has 1 or 2 grams. It is in all meat, even lean chicken. So that will be tough. Right now I am doing everything except counting my saturated fat grams. I will get there. It is also recommended to get an ELISA for other food intolerances (which is only about 80% accurate from what I have read), but I will be doing that on Tues. and should have the results in 10 or so days.

I will cut out any additional foods that show up. I am going to do my BEST to do the 4 day rotation of food families to prevent new intolerances from showing up and give my body time to heal.

I honestly do not know what will be left for me to eat. But if all of this does not cure me or give me at least some relief in the next year or so, then I will stop looking at food. I will be over food!!

[jerseyangel]

Is there a connection to DQ1 and MS? Im going to research that.

I'll be interested to hear what you uncover about this--2 people in my family (both on my mom's side) were diagnosed with MS in the last few years.

When I was sickest, I had trouble figuring out where to put my food down in front of me when I was walking sometimes. I would at times miss door jams and hit as I was going past--things like this.

A lot of that has resolved, but not completely....

[Rachel--24]

Im wondering if by having dq1, will keep people from ever being "normal" again. Will we ever be free from our toxicity? Will we only get better after treatment for a few months or years, then end up were we started from all over again.

No, I dont think that we are doomed....I think that we just have to work harder to resolve our issues.

It definately takes longer then a few months to clear out toxins that have accumulated over decades. Its my understanding that when mercury is detoxed from the body (and this can take some time) all other toxins leave more readily. That statement comes from one of the worlds leading experts on mercury detoxification.

Because of mercury's ability to block enzyme systems and impair detoxification...other toxins tend to accumulate. We cant get rid of them as efficiently as we would if mercury were not an issue.

My Dr.'s have never said that its a smooth and easy road to recovery....but its not impossible. People do get better. Alot of people who have went through it say that they've never felt better.

Unfortunately, yes....we *can* end up back where we started if we dont continue to do things to maintain good health. Detoxification is a big issue nowadays...so I think as long as you do what is necessary to keep toxins from building up...the problems dont come back. I know of people who take fillings out and do nothing else....expecting to get better...it doesnt work that way. It would be nice if it were that easy....but its not.

Taking fillings out removes the source of greatest exposure. However, we still have to deal with all that has accumulated in our body over all these years. It might take 5 years working with good Dr.'s but if you're getting better I'd say its well worth the effort.

I dont really think it will take that long for me to start feeling alot better....I'm already on my way....however, I plan on continuing long after symptoms resolve. I will continue until all tests are clear of any mercury burden.

I look forward to hearing about your hair analysis results.

Rachel,

What enzyme are you taking again? Does it help with the gi issues or the neuro issues?

I'm taking AFP Peptizyde. Most are taking it in conjunction with Zyme Prime (both are from Houston Neutraceuticals).

For some reason I do not tolerate the formula in Zyme Prime and I cant take it....but AFP Peptizyde has been very helpful. I also take No Fenol...but that is for other issues with high phenol foods.

Are you diagnosed Celiac? If you have a Celiac gene and/or positive test results enzymes are not a good idea unless you're only taking them to cover for possible cross contamination.

It seems like its helping with both GI and neurological symptoms. In cases of non-celiac gluten intolerance its the undigested gluten particles which are causing the problem. If the enzyme breaks down the gluten so that it is properly digested....those symptoms dont occur. With Celiac it wouldnt work....the autoimmune response would still occur.

[jerseyangel]

Yup....it looks like you do have DQ1.

I just now noticed that its in your signature.

No problem--I just had the last line there

Im wondering if by having dq1, will keep people from ever being "normal" again.

I know if I have the tiniest bit ot gluten, my body goes crazy.

I wonder about the "normal" part too, Paula.

I am also still so sensitive--I'm reacting right now to some CC from packaged dates which I found out were made in a facility with wheat. I've been sick all week--along with bad headaches--which is one symptom I've not had before.

[Rachel--24]

I hold on to hope. I was "normal" at some point, so I can be "normal" again. I refuse to give in or give up!

Positivity is a great thing! Keeping this attitude will get you far. Never give up hope!

This is the same thing I told myself when I was at my worst. I was "normal" once....and I can get there again. Its also the same point my Dr.'s have reiterated....If my immune system was coping fine for 3 decades....it can handle things again once the burden is lifted.

Even if my toxic level was high long before symptoms appeared my immune system was handling it. It may have been a little unstable at times....like during periods of heavy stress....but things would always balance themselves out. Eventually I got hit too hard and the scales totally tipped in the wrong direction. Removing each stressor will tip the scale a tiny bit back in the right direction. Getting rid of the *biggest* stressors will eventually allow the scale to be balanced once again. This is when the immune system is once again handling things on its own...and symptoms disappear.

[Rachel--24]

I remain unconvinced that you need DQ2 or DQ8, for celiac though. Maybe for a specific subset of celiac?

Personally, I think there are alot of self diagnosed Celiac's who do not carry the main genes and very likely do not have villi damage. In my opinion a positive response to the diet does indicate a gluten intolerance but not necessarily Celiac.

DQ1 is the gene that most of the biopsy proven Celiac's without DQ2 or DQ8 carry. If DQ1ers are not getting better on the diet alone...in my opinion there are other issues going on. The villi damage may be a result of something else entirely....as in the case you mentioned in your post.

If a person with DQ1 is diagnosed Celiac with positive biopsy....then are any of them recovering after the diet? Are they having follow-ups which prove that antigliadin and tTG levels have dropped and the villi have healed? Are they free of symptoms or did the diet just lighten the load?