Who Knows What Their Genes Are?

[AndreaB]

Andrea,

How do we know that any malabsorption that may show up is even related to gluten though? Take me for example...malabsorption score of 912 (a very high score), positive IgA, positive tTG, 2 intolerance genes and then it turns out my malabsorption has nothing to do with gluten. So what do all of these results mean?? How can we know for sure if there is nothing concrete about Enterolab?? These tests will never be accepted by doctors if Dr. Fine doesnt publish his findings.

Could be soy in his case as soy can cause as much damage as gluten.

You raise some good questions. I got tested through enterolab after reading the article on the parent site here.

i recently read an article about malabsorption that said there are numerous causes. it also stated that it is important to know the cause because different causes are treated differently.

Do you happen to have that? I usually copy things over from websites onto my computer. If you saved it I wouldn't mind a copy.

[Nantzie]

I wondered about all this too. I do remember seeing a posting of a genetic test result where there was only one gene. It caught my eye because it seems like everyone has two. I think it was stated as HLA-DQxx , or something like that.

This thread makes me think about some of the paleolithic diets, or Atkins or any of the other no carb, low carb, or no complex carb diets that people have been on in the last several years. Most people that I know that those type of diets either felt better healthwise, had more energy, less GI problems, etc.

So it might make sense that so many people seem to feel better off gluten. Maybe it's just something that's not good for most people to eat, or maybe just doesn't settle well for most people and doesn't ever develop into anything more than that.

Maybe as this group of gluten-related conditions becomes better understood, there will be something similar to blood sugar monitoring for diabetes. Maybe below a certain number even if you're susceptible to it, or even have some minor GI issues, you'd be okay, but then once it hits a certain number you've got to be gluten-free. I don't know. I'm just thinking out loud. My best friend just got diagnosed with diabetes, so I'm thinking about numbers and monitoring right now.

Nancy

[trents]

Wait a minute. This whole thing seems screwy to me. Are you making a distinction between gluten intolereance/sesnitivity and celiac disease?

Steve

[nikki-uk]

Small science input.

The HLA nomenclature is crazy. I've given up trying to understand it.

Well there you go!!

If Jegstar can't understand it then there's no hope for me!!

I'm not even sure it would be worthwhile getting my 2 non coeliac son's halotyped.

If a test can only tell me ''No they don't carry the main genes but that doesn't mean gluten won't do them harm'' then what's the point?

[Rachel--24]

Wait a minute. This whole thing seems screwy to me. Are you making a distinction between gluten intolereance/sesnitivity and celiac disease?

Steve

Scientifically speaking they are not the same thing. There is a distinct difference....Celiac Disease causes blunting of the villi...that is the definintion of the disease. An intolerance may cause damage of some sort but nothing that can be proven in a test to be related to gluten. If a person has joint pain for example...and that joint pain disappears with the removal of gluten...then obviously it would be wise for that person to avoid gluten but this cannot be identified scientifically as "Celiac Disease" if there is no evidence of the diesease in testing and there are no genes making this person susceptible to Celiac. If that person wishes to get gene testing through Enterolab to see if they have "sensitivity" genes.....then my question is what is the point if it is clear we *all* have genes associated with gluten intolerance anyway....and not just ONE gene asscociated with it but TWO genes suggesting gluten intolerance????

All results of gene testing through Enterolab will show two genes associated with gluten intolerance.....from what I've seen. I havent seen anybody get results showing they *cant* have a gluten intolerance....from a genetic standpoint. The results will say that even if there is no evidence (IgA or Ttg) of gluten intolerance but there are unexplained symptoms one should still exclude gluten if genetically susceptible to gluten intolerance.

Ummm....in my opinion it would make MORE sense to test for *other* possible reasons for symptoms given the fact that everyone carries these genes anyway. It is even MORE valid to continue testing when a gluten-free diet fails to alleviate symptoms.

[Rachel--24]

In a nutshell I want to know what is the significance of the "sensitivity" genes???? This is not clear to me since everyone here carries them....along with all of the other people walking around eating gluten all day long?? There is no scientific *proof* that these genes get triggered and cause disease as is the case with the DQ2 and DQ8 genes. If there is proof I would like to see it and if there is anyone who doesnt have 2 intolerance genes I would be shocked.....because I havent seen it yet.

[CarlaB]

I wondered about all this too. I do remember seeing a posting of a genetic test result where there was only one gene. It caught my eye because it seems like everyone has two. I think it was stated as HLA-DQxx , or something like that.

This thread makes me think about some of the paleolithic diets, or Atkins or any of the other no carb, low carb, or no complex carb diets that people have been on in the last several years. Most people that I know that those type of diets either felt better healthwise, had more energy, less GI problems, etc.

So it might make sense that so many people seem to feel better off gluten. Maybe it's just something that's not good for most people to eat, or maybe just doesn't settle well for most people and doesn't ever develop into anything more than that.

Maybe as this group of gluten-related conditions becomes better understood, there will be something similar to blood sugar monitoring for diabetes. Maybe below a certain number even if you're susceptible to it, or even have some minor GI issues, you'd be okay, but then once it hits a certain number you've got to be gluten-free. I don't know. I'm just thinking out loud. My best friend just got diagnosed with diabetes, so I'm thinking about numbers and monitoring right now.

Nancy

I am thinking along these lines, too. My oldest daughter has never been tested, but started eating gluten-free last summer. Her seasonal allergies went away. Now, if she eats any amount of gluten, her allergies will come back right away for a few days. She completely avoids gluten but doesn't worry so much about contamination issues in a restaurant like those of us who are more sensitive do.

My daughter Chloe tested positive. She notices when she gets a small amount of gluten (like in an Amy's meal) and she gets a belly ache. She's 13 and is also dilligent.

I don't make either of them be scrupulous with it, but they both see the health advantages for themselves and stick with it on their own. My husband has no health problems and feels better when he avoids gluten ... but he doesn't usually have enough motivation to.

I'm beginning to wonder whether it affects all of us at some level. I can look back and see family members who apparently had problems with it. My grandfather had a lot of health problems mostly relating to digestion and joints. My grandmother on the other side had health problems, too, and knew she needed to avoid wheat.

It makes me wonder if the real problem is our food that is so lacking in nutrition ... white bread, white rice, sugar, etc. The leaky gut theory is making more and more sense to me for those of us with non-celiac gluten sensitivity. My health has improved a lot going gluten-free, but I'm still not to the bottom of what my health problems really are ... there is more ...

[Rachel--24]

It makes me wonder if the real problem is our food that is so lacking in nutrition ... white bread, white rice, sugar, etc. The leaky gut theory is making more and more sense to me for those of us with non-celiac gluten sensitivity. My health has improved a lot going gluten-free, but I'm still not to the bottom of what my health problems really are ... there is more ...

Carla,

I'm thinking along these lines too. Mainly because alot of us with non-celiac gluten sensitivity dont seem to do well with gluten-free goodies either. Most of us seem to stick to whole foods to feel better.

If I go *just* gluten free but continue eating all gluten-free processed foods...I am not ok. If I go gluten-free and also eliminate ALL processed foods....there is HUGE improvement. So is it really the gluten thats making me sick or is it the chemicals and other junk thats in all the processed food???

Hmmm....maybe I should do another poll to see how much all of us non-celiac's have to take out of our diets to feel good....in comparison to those who are diagnosed Celiacs. I bet there is a big difference.

[Jestgar]

Hmmm....maybe I should do another poll to see how much all of us non-celiac's have to take out of our diets to feel good....in comparison to those who are diagnosed Celiacs. I bet there is a big difference.

My guess is that there are a lot of "non-Celiacs" who would never consider taking anything out of their diet to feel better. I kind of think that as human beings we are loathe to give up anything we enjoy until we have been shown how bad it can get if we continue.

I have wondered about people's compliance with the diet and how it relates to the severity of their symptoms. (And how much the symptoms impact their life.)

If my symptoms didn't so totally disrupt my life, would I be so worried about cc?

If my only issues were heartburn and a stuffy nose would I be willing to put up with that to have a beer now and then?

I suspect yes...

[CarlaB]

If my only issues were heartburn and a stuffy nose would I be willing to put up with that to have a beer now and then?

I suspect yes...

LOL I don't know if you are mentioning that because of my daughters ... one daughter gets heartburn, but it's not related to gluten.

The one who gets the allergies gets a constant running nose for several days. I suspect that if it were just a stuffy nose for a few hours she'd forget about avoiding gluten.

But I'm with ya'. Being non-celiac, I would find little motivation to eat gluten-free if it didn't make me sick.

I'm a little different than you, Rachel. I know my body needs to heal, so I avoid the processed food to give it the tools to get better. I actually feel no better nor worse when I eat pure garbage ... thus I have days I fall off the wagon (of whole foods, not gluten!) ... but not often.

[Nantzie]

Carla,

I'm thinking along these lines too. Mainly because alot of us with non-celiac gluten sensitivity dont seem to do well with gluten-free goodies either. Most of us seem to stick to whole foods to feel better.

If I go *just* gluten free but continue eating all gluten-free processed foods...I am not ok. If I go gluten-free and also eliminate ALL processed foods....there is HUGE improvement. So is it really the gluten thats making me sick or is it the chemicals and other junk thats in all the processed food???

Hmmm....maybe I should do another poll to see how much all of us non-celiac's have to take out of our diets to feel good....in comparison to those who are diagnosed Celiacs. I bet there is a big difference.

I have non-celiac GS (double DQ1, subtype 6) and have no other problems whatsoever. If I get glutened, I can always trace it back to a gluten source. All my GI problems including 30-second notice D, almost constant gas, went away. My pain went away. I was in so much pain all the time that if I hadn't found out about celiac I was actually going to talk to my doctor about getting a handicapped placard for my car. If I had to go grocery shopping by myself, it was taking me a couple hours and I had to use the grocery cart as a walker. I also couldn't bend over to get something off a low shelf because I couldn't pick it up. I had to shop from the middle and high shelves. Add to that headaches, irritability, anger, tearfulness, insomnia and nightmares. Toward the end, I was having trouble talking because my tongue felt too big for my mouth.

Most days were like that for me (I'd say 5 out of 7), but then there were the mystery days where I felt totally fine. After I heard about gluten problems I realized that my good days were days that I just happened to not eat gluten.

All of it, every single thing, went away after I went gluten-free. For me it didn't take months. It was an immediate change. It was like somebody flipped a switch. If I didn't eat gluten that day, I didn't have any problems.

So I wonder if we're looking at a group of several different reactions to gluten, some of which specifically cause reactions, and others that just make another underlying condition worse. Like the "stress" excuse that we've all heard before.

Think about that movie where the guy ate nothing but McDonalds for 30 days and almost ended up in the hospital. I think that's proof right there that a lot of the food that most of us used to eat was slowly doing damage. And that's the way most people live. They keep a roll of antacids in their pocket or purse, and it never gets worse than just some irritating, but not concerning, symptoms. Maybe they're actually reacting to gluten (or casein, soy, etc.) but it's just at such a minimal level that it doesn't interfere with their lives.

I'd love to see a poll on non-celiac gluten sensitivity and how many of us have strong improvement vs how many of us are still not doing well.

Nancy

[jerseyangel]

I have Celiac, and I have cut out so many foods, it's not even funny. I can't tolerate plant proteins, period. If I did just a gluten-free diet, I'd be sicker than I was before I was diagnosed--that's exactly what happened after about 4 months on the gluten-free diet--I went back to square one.

It wasn't until I began to do my elimination diet and realized how many additional intolerances I had that I began to feel better again.

I no longer can eat:

legumes

corn and corn syrup

tomatoes

citrus fruit

apples

coconut

soy

dairy

tapioca

grains (although I get away with rice no more than once a week)

I've yet to find a vitamin, digestive enzyme or probiotic that dosen't make me sick, so I don't take suppliments.

As time goes on, this list just gets longer--not shorter.

I feel best with meat, veggies (not legumes), very little fruit (banana and blueberries mostly), olive oil, spring water, potatoes and almonds.

[rez]

I totally agree w/ you Rachael. What good is a test if everyone comes out positive. Everyone will be told they have a gluten sensitive gene. Also, people generally feel better when they eat healthy. I can even over eat on gluten free junk and then feel like crap and want to go lay down. I did Enterolab and I honestly think it was pointless. I truly believe my son has Celiac. He has a double copy of DQ2. Also, there's only that one article anywhere that says a double copy puts you more at risk. I wonder where that person got their info????? Here's my situation now. My son is remarkably better, but now my daughter is complaining of joint pain and acid reflux. I don't want to look like some whack who has self diagnosed everyone in her family w/ Celiac, but I think I have screwed up any test results that could have come back positive. Our whole family is eating "gluten light". All gluten free cereals in the morn, lunch my daughter eats gluten, but supper is all gluten free and all the baked goods are gluten free. Now, I'm stuck. What do I do now? My ten year old is not open to a gluten free trial diet and I myself would like to know for sure. My doctor said you would have to have a gluten challenge of 6 months in order to try to obtain a positive biopsy. It's crazy! There's so much gray area. When you really think of it though, God didn't create all these refined products for us to eat. Man was supposed to "hunt and gather". Fruits, veggies, potatoes and rice are all whole food, natural things. I now bake all our treats and bread. No preservatives! Of course, this makes me feel better than McDonalds would. The country is in a crisis of obesity. That's scary and could eliminate tons of health problems there. All those Atkins, South Beach, Dr. Oz......... They are all GLUTEN FREE, but that's just not how they say it. No health giru reccommends gluten.....okay I'm getting wordy. Love these chats....I just got back into here as I've cleaning for the past three day.

[nikki-uk]

Rez, - I'm in a similar situation.

Hubby is biopsy proved coeliac as is son number 2.

My eldest (17yrs) asked if he could be tested as he's been trying to put on weight but can't (he is very slim)

All our mainmeals are gluten-free - and my son informs me that he's been avoiding 'wheaty' things at lunch as he gets stomach ache - so he is in effect 'gluten light'.

I told him to up his intake of gluten (toast for breakfast, sandwich lunchtime and where possible I 'gluten' his dinner e.g stir flour in his gravy etc)

I've told him to do this for 6 weeks - then I will take him to the doctors for a blood test.

Not sure if it would be long enough..but worth a try

BTW..Wish I could get into a 3 day cleaning stint!!

[Mamato2boys]

I think that was her.

My son has two DQ1's (both subtype 5 - I don't know if that matters). I refused to have him biopsied, but he is positively responding to the diet.

[AndreaB]

The following snippet is from a comment on an article called "bread may be the culprit behind acne". I don't necessarily agree with all of Mercola's stuff but a lot of it makes sense.

Anyway, my inquiring mind wonders if the 10-20% of the population means the worldwide population and if they are the ones with the dq4.

Limiting grains is an integral step toward optimizing your health. The more we study the influence of grains, and their secondary consequences on insulin, the more we will find that their pervasive influences touch nearly every aspect of our health.

Does this mean everyone should avoid grains? Absolutely not. Whole grains do seem to benefit some, but these people are unquestionably a minority of the population. Most likely, only 10 percent to 20 percent of the population should even consider them.

The vast majority of us will have some short- or long-term health complication as a result of consuming them.

[happygirl]

I have

HLA-DQB1*0302 (which is commonly referred to as HLA-DQ8, one of the Celiac genes) here is an interesting link about DQ8: Open Original Shared Link

and

HLA-DQB1*0501 (which I cant quite figure out)

Dr. Green writes about the genetics of Celiac (not gluten intolerance): "HLA DQ2 and DQ8 are nicknames for genes. They are actually molecules on cells that are encoded by specific alleles of genes. HLA-DQ2 (encoded by alleles DQA1*05 and DQB1*02) and DQ8 (encoded by DQB1*0302 and DQA1*03)"

He writes that 95% of Celiacs have dq2 and the remaining 5% have DQ8. About 30% of the general population has dq2 and/or dq8.

"in simple terms, specific genetically driven immune cells (lymphocytes with hla sentries) are primed to react to gliadin"

"researchers are looking for other non-HLA genetic factors because the HLA genes are thought to account for less than 50 percent of the genetic influence. It is also possible that these other genes might account for the variable clinical nature of celiac disease"

It is interesting to note that HLADQ8 has been strongly linked to Type 1 Diabetes (autoimmune), which is also linked to Celiac.

[CarlaB]

My son has two DQ1's (both subtype 5 - I don't know if that matters). I refused to have him biopsied, but he is positively responding to the diet.

I have 2 DQ1's and positive dietary response, too. There was someone on here who has 2 DQ1's and a positive biopsy.

[Guest Kathy Ann]

I emailed enterolab a couple of weeks ago and the nurse said she had just been helping Dr. Fine compile data that very day. She went on to say that from what she had seen, it would be well worth the wait. She said he plans to submit his data to The New England Journal of Medicine (I think that's the publication - I can't find the email right now) before the year is out and that it would then likely be actually published in 2007.

[happygirl]

thanks for posting that info, Kathy. The NEJofMed is a very prominent journal and hard to get published in. I hope his work is validated and he is published. The publishing process is very long (receiving it, passing it out to reviewers, deciding if it is publishable, re-editing, publishing, etc) so hopefully it will have a positive result.

[chrissy]

i am eagerly awaiting the results of our family's testing----in case you don't remember, my family is taking part in the celiac study being done through the university of california, irvine. it will be really interesting to see our results----there are 11 of us that are being tested, my 2 children from my first marriage, kevin and i, and all 7 children that we have had together. my 2 step children did not get testing done. we already know that our 17 year old son carries one copy of DQ2, and does not have celiac disease.

sounds like enterolab just keeps pushing their publishing date back further-----i thought he was going to publish before the year was out---now it is going to be 2007? it makes it hard to not be skeptical.

[Rachel--24]

sounds like enterolab just keeps pushing their publishing date back further-----i thought he was going to publish before the year was out---now it is going to be 2007? it makes it hard to not be skeptical.

Yeah...I could swear thats the exact same thing I heard last year...that they were just about done....it was gonna be well worth the wait...it would be published in 2006...blah, blah, blah.

Pretty soon I'm gonna be so skeptical of him I'm just gonna go ahead and start eating gluten again!

Nah...just kidding.

Seriously though...he's losing credibility by dragging his feet like this.

[AndreaB]

I know Mercola is known to be on the more radical side. But what about his statement that most people do better not eating whole grains.

Has anyone looked at dogtor j's stuff. He's kinda along the lines of Mercola but doesn't advocate gluten/dairy/soy and very limited corn. Open Original Shared Link. A lot of his stuff make sense, although I haven't read the whole article (The Answer) yet.

Our genetic make up probably makes us more prone to some things than others. My mom is of the belief that since I ate gluten/soy everyday that that made me intolerant to it. I also ate rice everyday and am not intolerant to that. That kind of throws a wrench in that theory.

I don't think I had progressed to celiac yet as my numbers were so low, but due to the fact that I have a celiac gene I'm sure it would have continued to progress. I feel better of both gluten and soy, don't know which was my main culprit though.

I had a friend tell me that since I'm blood type O that I should be eating meat. This was when I was vegan. I don't agree with all the blood type stuff either but I do feel better eating meat.

Now that I've gotten a little off topic here.

I'm hoping that we will see published results from Dr. Fine in the next year or two.

[CarlaB]

I had a friend tell me that since I'm blood type O that I should be eating meat. This was when I was vegan. I don't agree with all the blood type stuff either but I do feel better eating meat.

The blood type diet says I should be vegetarian ... but I, too, feel better eating meat! I think our bodies need the protein.

I do not doubt that most people feel better off gluten. It seems that the wheat of today is different than the wheat of years ago ... I hope we don't manipulate all our food so that our bodies are incapable of using it!!

[Guest Kathy Ann]

In fairness to Dr. Fine, MOST authors no matter what field they are in usually are WAY behind schedule when it comes to publishing deadlines. It's a joke in the industry, it's so common.

I choose to think that Dr. Fine is honorable and just being very, very careful to dot every "i" and cross every "t" because he knows that it IS difficult to get into those medical journals and he will probably only get ONE shot at it. Researching and then compiling data is tedious, to say the least, especially when you are trying to please an extremely skeptical and powerful set-in-their-ways medical system. If he didn't have anything and was just stalling, I would think he would just say they were having some difficulties or that he had gotten some new breakthrough information and buy themselves more time. But the very fact that they keep promising so specifically would say to me that they are peddling as fast as they can to get it done. Someone in a previous post pointed out that this is a man with extremely prestigious credentials, capable of having a brilliant career. I hardly think he would jeopardize it all by promising something so openly to so many people that he didn't intend to deliver. I guess I just choose to think positive on this one and believe that true integrity will win out in the end.