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Rachel--24

Who Knows What Their Genes Are?

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I'd also like to add that rarely do companies publish their developmental data. It makes it too easy for other companies to steal and work around the process in order to circumvent the patent. I am totally not surprised that this hasn't been published.

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.....What about Gluten Sensitivity? - is that triggered by stress etc the same as C.D ?

Can the effects of gluten sensitivity be as insidious as C.D (e.g No obvious bowel problems but having other health problems?)

.......

OMG - what an inquiring mind I have!! :lol:

There are clearly not enough :blink: confused/scratching head emoticons!!

...and I've asked way too many questions!! :lol:

Any theories welcome :D

ok, you did say any theories welcome

oh yes gluten sensitivity can be insidious!

when I ingest it, no brain fog (actually get sharp and hyper), no immediate nausea, no immediate anything for that matter and then continued ingestion builds to the point where it switches off the vagus nerve. This is the nerve that supplies motility to the stomach amongst other things. So with the smooth muscles of the stomach not operating and the vagus nerve swtiched off the effect is awful - meat fibres do not break down and worst of all the stomach does not empty, so I can be sitting there with food in my stomach and getting starved of energy and hypoglycaemic at the same time - with no apparrent solution - eating isn't going to help. This condition is known as gastroparesis, gastroparesis sufferers therefore tend to avoid hard to break down protein sources such as meat and end up on very high carb diets, in my case I ended up on a high wheat diet! lots of bread which would eventually pass through my system if i didn't mix it with hard to break down meat. So goodbye to meat sandwiches. Hello to the juice machine and putting all food thru a blender and drinking it.

i've been eating wheat all my life but I triggered a few years ago, ok now for the theory bit. My digestive system got an immediate boost from returned motility but digestive distress far from went away and actually I continue to slowly decline despite being gluten free (but no problems with motility any more). So this tells me that I have some other problem, an inability to digest - my inability to digest meant I couldn't properly break down wheat and ended up with a lot of those gliado and gluto peptides (partially broken down proteins) running around my system instead of getting the peptides properly broken down into non-allergy amino acids. So in my case I don't think its stress that triggered my gluten sensitivity, nor do I think that gluten is the core of my digestive woes, but rather some other condition that makes me unable to properly break down the wheat allergens caused the gluten sensitivity.

this afternoon I drank some pre-digested baby formula, I just had my late evening snack and added MCT oils to my gluten-free scone instead of nut butter coz those oils don't require normal digestion. Lunchtime I was able to eat a can of chicken coz I got motility now, and this evening fish without having to put the accompanying cabbage thru the juice machine, but had to load it all with a large amount of enzyme supplements. I'm actually feeling quite good right now, but this is just not normal! er sorry ran off topic a bit there

cheers,

Mike

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This question may have been asked and answered already, but I didn't see it.

Do you need TWO genes to have celiac? One from Mom and one from Dad? Or is that still unknown?

For example, since I signed up many many years ago to be a bone marrow donor I know that I have HLA-B8 which I've only seen referenced once as a celiac gene. I believe CarlaB posted a quote from or link to the website.

Since I don't have celiac and nor does my husband, how is it that Ty has it? Did he get one gene - HLA-B8 - from me and another from his Dad? (We have not had gene testing done.)

Edited to add: I suppose it's possible since we haven't had gene testing done that we all have more than one gene, but have not had the "trigger". Not sure what Ty's trigger was unless it was starting kindergarten.

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2boys:

The answer to your question is that it is known, and the answer is that you only need one (DQ2 or DQ8) to have Celiac. You do not have to have double copies. Some people can, or can have both 2 and 8, or only have one.

Just having the gene doesn't mean anyone HAS celiac. about 30% of the population has one or both of the genes, but "only" 1 in 133 has Celiac. So, there is more than just genes at play. This helps explain why there are some families with only one Celiac, and other who have multiples.

also, they suspect that about 90-95% of dx'ed celiacs have dq2 and/or 8, so they acknowledge that there must be other genetics involved that they have not identified.

of celiacs with the genes, 95% have DQ2 and 5% have DQ8. (I personally have DQ8)

also the trigger does not have to be "stress"---usually stress is considered when there is a serious life altering event and the body reacts horribly to it (death, trauma, prolonged hardship with family, relationships, etc). believed to be a more "common" trigger is viruses...he could have had a virus that you never even knew about, it was so mild-and that could have "triggered" him over. (for example, over 90% of the population has the dormant EBV virus in their system, which can cause mono. Mono for many (including myself) can be devastating. However, not everyone who gets EBV gets full blown mono. But the virus has been theorized to cause other problems. This is just ONE example of how something simple and common can be in play"

Hope this helps.

here is part of my post from earlier in this thread:

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"

(the above quotes are from Dr. Green's book, Celiac Disease: A Hidden Epidemic.)

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

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Thanks Happy, that does help and that's what I thought although I couldn't really articulate it.

Now for a science question - is HLA-B8 the same as HLA-DQ8? Has the nomenclature changed since I found out I had HLA-B8 in about 1990, and I only hear about DQ here on the forum. Personally, I love their milkshakes, but that's all I know. :ph34r:

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Linda..... :lol:

I don't know about the genes aside from the fact that in Dangerous Grains they are both listed. Makes me think they are two different genes.

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Thanks Andrea. I haven't read Dangerous Grains, our library doesn't have it. I did manage to get Celiac Disease: A Hidden Epidemic, but I only managed to skim it because there were a few people behind me on the hold list and when there are holds you don't get to keep it as long - no renewing allowed.

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Who Knows What Their Genes Are?, Curious about something...

I definetly know that I am wearing Levi's and I also have some Wrangler's in my closet :-)

(sorry I couldn't resist)

My understanding and experience is that genetics aren't very reliable in predicting your succeptibility to Celiac disease.

I'm the only one in my family to have it.

I am of european descent and it seems that those clever Europeans mastered the art of cultivating our bad grains early in time and used it profusely. My thinking is that they became dependant on these grains (as we americans are) and possibly the genetic strains evolved into toxic substances for some of us.

There are other substances that can build up in the body over time and one day reach a level that the body cannot tolerate (petroleum products).

It would be nice to know for sure how this mechanism works but for now I'll settle for keeping the "wolves at bay" by staying gluten-free.

Wouldn't it be nice if we had a little test kit to check our food with........kinda like a pregnancy test.......if it turns blue.........it will piss off your Celiac sprue!

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Linda:

(from my post above, which is taken from Dr. Green's book): 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)"

so no, d8 is not dq8, but it might just have been what they referred to it as. it is important to note that dq8 is actually NOT the name of the gene, just how we call genes in everyday life.

people often misinterpret the way enterolabs gene tests are written, which is frustrating. it is because we are trained to look for "dq2 and dq8" its like saying "this is Grandma" (her nickname, but how people know her) when it REALLY is, "This is Jane Doe" (her name, not her nickname)

hope this helps.

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ibesurfn:

"My understanding and experience is that genetics aren't very reliable in predicting your succeptibility to Celiac disease.

I'm the only one in my family to have it."

that is true: they don't predict your susceptibility to have it, per se. However, 95% or so of Celiacs do have one or both of the genes, (this is not including gluten intolerance, but only Celiac), so there is SOME important role that they play. And, obviously, there are numerous other factors, including 1. the celiacs that dont have dq2 or 8 2. why some families are FULL of Celiacs and others aren't 3. what are the other genes involved and 4. how does gluten intolerance fit in.

so the genes (for the vast majority of Celiacs) are necessary, but not sufficient, for having Celiac.

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Linda:

(from my post above, which is taken from Dr. Green's book): 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)"

so no, d8 is not dq8, but it might just have been what they referred to it as. it is important to note that dq8 is actually NOT the name of the gene, just how we call genes in everyday life.

people often misinterpret the way enterolabs gene tests are written, which is frustrating. it is because we are trained to look for "dq2 and dq8" its like saying "this is Grandma" (her nickname, but how people know her) when it REALLY is, "This is Jane Doe" (her name, not her nickname)

hope this helps.

Yes, it's just that years ago, I was told two HLA-As and one HLA-B and nothing about DQ or D anything, so I was wondering if the naming conventions had changed in the last 15-16 years and/or if they are completely different alleles. So, perhaps DQs are subsets (for lack of a better word) of the HLA-B allele.

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Linda,

I believe what you were told was probably correct .... but was told to you in the scientific terms! General population says DQ2/8, you were told alleles DQA1*05 and DQB1*02 and DQB1*0302 and DQA1*03. I am not a biology person, but it seems that we are talking about the same thing. Nice when that works out that way :D

this gene thing fascinates me...

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Since I dont have much *proof* of what my Enterolab results mean and I cant gauge what my reaction to gluten would be....I think I might have to do my own experiment.

First, the genes dont tell me much since everyone seems to have a combo of gluten intolerance genes. Second, are we 100% positive that tTG in the stool is specific to gluten only and cannot be elevated for any other reason?? My malabsorption was extremely high but I'm almost 100% certain it was mainly caused by issues other than gluten intolerance.

I've been off gluten for more than a year and a half now....my diet is extremely restricted and no chance of cc. I was thinking the only way for me to know this test is legit would be to retake it. I would use a different name, address, etc. I would also state that I have NOT been on a gluten free diet at any time. I would list all of my symptoms.

*If* the test is accurate and these levels are only indicating a response to gluten then my results should be totally within normal range. Everything should be normal. If my levels are still elevated....there is no way it would be because of gluten. Regardless of what I write on the form I send in....my test results should NOT indicate a gluten intolerance. If the results are normal I will have faith in the tests....if they are still showing positive....something is clearly wrong with the testing.

What do you guys think?

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If you had the extra money to spend that would be interesting.

I really don't think he's pulling the wool over people's eyes but I definately agree that your malabsorption could be caused by something else.

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Rachel,

I asked Phyllis at Enterolab about the tTg being specific to gluten and she said it was. My husband just got dx'ed with Graves disease and has agreed to do the Enterolab test due to the possible connection with gluten. (He is skeptical about Enterolab.) We know he has a DQ 2 gene and a gluten intolerant gene but he has never done the antibody test. I asked her if his tTg would be elevated due to the Graves disease and she said if it was elevated it was due to gluten but that there could be other autoimmune activity going on causing the thyroid problem.

It would be interesting to see your results if you tested again.

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I've been off gluten for more than a year and a half now....

*If* the test is accurate and these levels are only indicating a response to gluten then my results should be totally within normal range. Everything should be normal. If my levels are still elevated....there is no way it would be because of gluten. Regardless of what I write on the form I send in....my test results should NOT indicate a gluten intolerance. If the results are normal I will have faith in the tests....if they are still showing positive....something is clearly wrong with the testing.

What do you guys think?

Rachel, I don't think there are any published data on how long it takes for the intestine to stop producing antibodies. It seems like a year and a half is long enough for the blood test, but without a reference point you won't really know what your new Enterolab results mean. If they are negative, then they are negative, but if they are positive you don't know if the test isn't valid, or if your intestine is still producing antibodies.

You might want to think about whether it's really worht the money.

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Rachel, I don't think there are any published data on how long it takes for the intestine to stop producing antibodies. It seems like a year and a half is long enough for the blood test, but without a reference point you won't really know what your new Enterolab results mean. If they are negative, then they are negative, but if they are positive you don't know if the test isn't valid, or if your intestine is still producing antibodies.

You might want to think about whether it's really worht the money.

I dont plan on doing the test today. I have alot of money going out right now for treatment of my recent Lyme diagnosis. It wouldnt make sense for me to pay for the Enterolab test right now...I'm thinking in about 6 months. This would make me totally gluten-free for 2 whole years. My numbers werent high to begin with. I believe my IgA was 16 and tTG was 15. This was after 4 months of being gluten free. The numbers after 2 years should NOT be positive considering how low my numbers were back then. My malabsorption score was HIGH.....not really corresponding with my low numbers.

I know that Enterolab states that numbers dont indicate extent of damage BUT...I think I can safely say that the malabsorption was more to do with Lyme Disease and other factors....gluten may have contributed but not to the extent of what I had going on. My malabsorption did not improve from just the removal of gluten and my score was 912 after 4 months of being gluten free.

I believe I can use my previous test results as my reference point. My numbers should be lower... I dont see any reason for them not being in the normal range. If the numbers are the same or higher.....it is not from gluten. My body would not be producing MORE antibodies almost 2 years later....it doesnt happen that way.

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I asked Phyllis at Enterolab about the tTg being specific to gluten and she said it was. My husband just got dx'ed with Graves disease and has agreed to do the Enterolab test due to the possible connection with gluten.

This is one of the main reasons I want to do the test again. There is no evidence (other than what Enterolab states) that tTG in the stool is specific to gluten. I have other conditions...Graves Disease, Lyme Disease, candida and who knows what else. If I test after being gluten-free for two whole years the tTG should be within normal range. My Lyme Disease must have progressed since my original Enterolab test.....seeing as I only got the diagnosis last month....if my tTG is the same or higher I would have to assume that other conditions can cause the elevated tTG. I just want to know for my own peace of mind.

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

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My numbers werent high to begin with. I believe my IgA was 16 and tTG was 15. This was after 4 months of being gluten free. The numbers after 2 years should NOT be positive considering how low my numbers were back then. My malabsorption score was HIGH.....not really corresponding with my low numbers.

I believe I can use my previous test results as my reference point. My numbers should be lower... I dont see any reason for them not being in the normal range. If the numbers are the same or higher.....it is not from gluten. My body would not be producing MORE antibodies almost 2 years later....it doesnt happen that way.

While it does sound like a reasonable approach, I think my argument still holds. If the numbers are lower, or significantly higher, you have one type of answer; however, if the numbers are the same, or not very much different, you still don't know for sure. You may be one of those people that always has numbers that are a little bit high.

If I were setting up an experiment in the lab and expected these kinds of results, I would work very hard at finding a different experiment. If I couldn't find one that directly answered my question, I would look for two that answered my question obliquely.

I haven't read through the OMG! thread, so I haven't been following your journey to wellness, but maybe there are other lab tests that were off before you were gluten-free and now would be normal?

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I haven't read through the OMG! thread, so I haven't been following your journey to wellness, but maybe there are other lab tests that were off before you were gluten-free and now would be normal?

I see your point but the thing is....all of my lab tests (and there were plenty) were completely normal pre-gluten-free and post gluten-free. There were no changes...I had a million tests done before I implemented the diet....not just blood work but CT scans, MRI...etc. I've also had the endoscopy/biopsy and a colonoscopy....everything was normal. There was NO cause found for my debilitating symptoms in any of these tests. It makes sense now that I have tested positive for Lyme....it wouldnt show up in these types of tests. According to ALL of the tests I was perfectly fine...except for Enterolab's test...which stated I had "active" gluten intolerance. This is the only test I have pointing toward gluten....it certainly would be important for me to know how reliable this test actually is.

Enterolab states that the antibodies would likely be back to normal after 1 year on a gluten-free diet. Of course....we cant know for sure but I'd say 2 years gluten-free should provide normal test results.....given the low number on the original test.

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Hmm, OK. I understand a little better where you're coming from. Are you hoping to return to gluten but won't do it unless you are absolutely sure it's OK? In that case, I would do it. You have more to gain from the answer than you have to lose.

But still... if your numbers haven't changed, you may just have normally high antibody titers. I spent some time researching the validity of the tests and although the papers are all about the blood tests, it's reasonable to assume that the same is true for the intestinal test: some people just have high antibody titers.

But since you have a kind of freedom to gain from the results, if it were me, and the numbers hadn't changed, I would probably assume that I was one of the few with weird numbers and go back to gluten anyway. And if they were even a little bit lower I would spend the next week in the pizza parlor with a huge glass of Guiness in front of me!!

I'm pretty impressed with the intensity of your research on this. Very cool.

Jeanna

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But since you have a kind of freedom to gain from the results, if it were me, and the numbers hadn't changed, I would probably assume that I was one of the few with weird numbers and go back to gluten anyway. And if they were even a little bit lower I would spend the next week in the pizza parlor with a huge glass of Guiness in front of me!!

:lol::lol:

Honestly, I dont think I would jump in with both feet...so to speak. I think I would be very catious...given all that I've learned about gluten over the past year and a half....and not knowing for sure if the test results are valid. :unsure: I might just test the waters...just to see if I notice any type of reaction. I would have to be symtpom free from the Lyme and everything else before I could really try anything like this.

Prior to getting sick I never had any type of reactions to any food....I was healthy and symptom free. Everything came on quite suddenly and rapidly. I'm thinking it was the Lyme Disease and not gluten related at all. My only concern is that having this illness has triggered a gluten intolerance (reflected in the Enterolab results) that wouldnt have occurred otherwise. The last thing I want to do is battle this Lyme infection and then turn around and eat gluten and cause myself more problems. :huh:

However, if there are no signs of a problem with gluten I would love to *treat* myself to a pizza and beer now and then. That would be very cool.... :D

Then again....if all of my numbers went down into the normal range...I would be very afraid of gluten. :unsure:

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Then again....if all of my numbers went down into the normal range...I would be very afraid of gluten. :unsure:

I would be too.

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