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I have a friend with celiac disease who had herself and her 2yo son (he will be 3 on Saturday) genetically tested at Enterolab recently. She has other children, but this 2yo was born with a heart defect and he is old enough for his first major heart operation later this summer. I asked my friend if I could post her son's results here so that those who know more about this gene stuff could comment, and she is excited to have any input.
Her main concern is if he will develop celiac, or may already have celiac. She is thinking about having him biopsied for diagnosis so that they know for sure and he can be in the best shape he can before the operation. I know, I know... just put him on the a GF diet and don't put him through the endoscopy, but he's not my son...
Here are his results:
Gluten Sensitivity Gene Test
HLA-DQB1 Molecular analysis, Allele 1 0202
HLA-DQB1 Molecular analysis, Allele 2 0602
Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)
Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 other than by HLA-DQB1*0201, or DQ3 other than by HLA-DQB1*0302). Furthermore, HLA-DQ2 genes other than by HLA-DQB1*0201 can be associated with celiac sprue in rare cases. Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.
Thank you...
2-year-old Boy Enterolab Gene Results
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MBombardier
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2-year-old Boy Enterolab Gene Results
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Is the kid symptomatic? Those results do not point to full celiac, so I'm not sure there would be any great benefit to a GF diet. Perhaps limiting gluten would be wise, but 100% removal would be difficult to sustain. Without a true celiac gene, I'd wait to see real symptoms, and if there are some, look for other intolerances as well (such as milk). Does she have the same genes as him?
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MBombardier
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- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
I haven't seen her gene test, so I don't know. Since she's got celiac (diagnosed through biopsy, I think), I would think that she has two genes, one celiac and one GS, and passed the GS to her son. He's got all sorts of health problems, but who knows if they are attributable to his bad heart or food issues?
I looked on the IHOP website, and it looks to me with my limited understanding that the 0602 gene is related to type 1 diabetes and dairy intolerance. His mother doesn't seem worried about the diabetes connection. They have cows, and everyone in the family drinks raw milk. She has told me that people with lactose intolerance (like me) do well with raw cow's milk. So when I asked her if the 2yo seemed to have trouble with milk, she didn't answer me. I'm not sure she understands the difference between lactose and casein.
I looked on the IHOP website, and it looks to me with my limited understanding that the 0602 gene is related to type 1 diabetes and dairy intolerance. His mother doesn't seem worried about the diabetes connection. They have cows, and everyone in the family drinks raw milk. She has told me that people with lactose intolerance (like me) do well with raw cow's milk. So when I asked her if the 2yo seemed to have trouble with milk, she didn't answer me. I'm not sure she understands the difference between lactose and casein.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Marliss,
That 0202 is one of mine. As I look through the generations of my family (including my cousin-peers), I see a lot of AI stuff on both sides - the "true" celiac side and the 0202 side. I don't know which is which.
Having double-whammy genes myself, I wish I had stopped eating gluten decades ago.
Hopefully this poor little guy's biopsy would be negative - but he still shouldn't be eating gluten. Maybe he can tolerate small quantities; maybe he can't. Around the time of heart surgery... that's not when I would choose to find out the hard way that he can't. Proving whether or not gluten has already done damage can be done when he's otherwise 100% healthy, after recovery from this surgery. If it needs proving it all.
I don't know whether his mother has a "true" celiac gene or not - she didn't pass it on, if so. But maybe she doesn't, and still has CD. It seems as though this kid is at significant risk that Some Bad Outcome could result from ingesting gluten, and he's about to have a big procedure. NO EXTRA RISKS, would be my vote - at least for now.
I would think with a child that age, you might see health improvements over the course of a long weekend, if he is already reacting to gluten (parents with kids with behavioral issues, ADHD and autism-spectrum Dxs report that). BUT don't tell his mother that, in case she interprets that to mean he could go back on gluten if he doesn't seem different fast!
Good luck with this conversation. When I see someone's face harden when I talk about this (hey, they shouldn't ask!), I know there's a food issue going on for sure, and you know what I consider the likeliest culprit!
Love,
Sara
That 0202 is one of mine. As I look through the generations of my family (including my cousin-peers), I see a lot of AI stuff on both sides - the "true" celiac side and the 0202 side. I don't know which is which.
Having double-whammy genes myself, I wish I had stopped eating gluten decades ago.
Hopefully this poor little guy's biopsy would be negative - but he still shouldn't be eating gluten. Maybe he can tolerate small quantities; maybe he can't. Around the time of heart surgery... that's not when I would choose to find out the hard way that he can't. Proving whether or not gluten has already done damage can be done when he's otherwise 100% healthy, after recovery from this surgery. If it needs proving it all.
I don't know whether his mother has a "true" celiac gene or not - she didn't pass it on, if so. But maybe she doesn't, and still has CD. It seems as though this kid is at significant risk that Some Bad Outcome could result from ingesting gluten, and he's about to have a big procedure. NO EXTRA RISKS, would be my vote - at least for now.
I would think with a child that age, you might see health improvements over the course of a long weekend, if he is already reacting to gluten (parents with kids with behavioral issues, ADHD and autism-spectrum Dxs report that). BUT don't tell his mother that, in case she interprets that to mean he could go back on gluten if he doesn't seem different fast!
Good luck with this conversation. When I see someone's face harden when I talk about this (hey, they shouldn't ask!), I know there's a food issue going on for sure, and you know what I consider the likeliest culprit!
Love,
Sara
I think the distinction between celiac and "other" gluten problems is misunderstood. I'm not saying there is no distinction - but when your body reacts to gluten, it's gotta go. If you have a high potential for reacting to gluten (2 GS genes), AND you're a child with a heart defect (so maybe not at his peak health potential), about to have major surgery - anything that can be done to maximize his safety and healing seems great.
It's not like there's some miracle nutrition in gluten that we're all missing out on. It's a crappy protein (with a high glycemic index) and requiring giant supplements of other amino acids and vitamins to make it work for human nutrition.
Maybe, since he doesn't have an official celiac gene (and I do believe those genes make it more likely that someone develops small-intestine atrophy, or maybe it occurs sooner)... if he eats GF, and someone gives him a cupcake from time to time, it won't mess him up as badly as someone with that other DQ2. The surest way to make that future cupcake a problem for him, in my opinion, is to continue including gluten in his diet. It's just a bomb waiting to go off.
I'm not even his mother's friend, though ;)
I'm starting to sound rant-y, I know, but trust me - the stuff I edited out was much shriller. (What exactly would these famous celiac experts be an expert in if there were more similarity between celiac and non-celiac GS? They'd just have been wrong about even more assumptions all these years.)
L,
S
It's not like there's some miracle nutrition in gluten that we're all missing out on. It's a crappy protein (with a high glycemic index) and requiring giant supplements of other amino acids and vitamins to make it work for human nutrition.
Maybe, since he doesn't have an official celiac gene (and I do believe those genes make it more likely that someone develops small-intestine atrophy, or maybe it occurs sooner)... if he eats GF, and someone gives him a cupcake from time to time, it won't mess him up as badly as someone with that other DQ2. The surest way to make that future cupcake a problem for him, in my opinion, is to continue including gluten in his diet. It's just a bomb waiting to go off.
I'm not even his mother's friend, though ;)
I'm starting to sound rant-y, I know, but trust me - the stuff I edited out was much shriller. (What exactly would these famous celiac experts be an expert in if there were more similarity between celiac and non-celiac GS? They'd just have been wrong about even more assumptions all these years.)
L,
S
Marliss,
Like you, unless he is showing obvious clinical symptoms of gluten-sensitivity, I would be more concerned about casein-sensitivity, and/or the risk of developing diabetes.
The decision of whether or not to avoid gluten is much more complex than meets the eye. Here's the complicated part of cutting gluten out of an infant's diet: If he is not yet developing any antibodies to gliadin, or any of the glutenins in wheat, then eliminating gluten from his diet will certainly postpone any possible future sensitivity to gluten, and it will also increase the odds that when gluten is eventually introduced into his diet, (when he is older), he will be less likely to develop a sensitivity to it. However, as far as the short term is concerned, if he has no clinical symptoms, then removing gluten from his diet would be sort of a moot point, (in the short term).
On the other hand, if he is already showing clinical symptoms of gluten-sensitivity, then he is obviously producing antibodies to gliadin/glutenins, and in that case, removing gluten from his diet will stop the symptoms, but it will also make him more sensitive to it, so that if he accidentally ingests even traces of gluten in the near future, his reactions will be more serious than they would have been if his mother had simply allowed gluten to remain in his diet. That may seem counterintuitive, but it's true, unfortunately.
When gluten is withdrawn from the diet, the immune system continues to search for it for at least a couple of years, (by producing antibodies). With nothing else to occupy it's full attention, the immune system is like a well-trained soldier, anxious and waiting for the attack that he knows is inevitable. The immune system is primed and ready to pounce, and when it detects that gluten is back in the diet, it will attack even a trace of gluten with all the resources it has available to it - whatever it feels will help to drive out the "foreign invaders", once and for all. IOW, it will overreact. That's why diet slipups cause such major reactions for most of us. Our immune system becomes more aggressive than it was before we eliminated gluten from our diet.
Look at it this way. If our back yard is full of rattlesnakes, that's definitely a PITA, but we eventually get sort of used to them, and we tend to work around them, and every day becomes routine, and we view them as sort of "business as usual". On the other hand, if we manage to get rid of all of them, and things start to settle down a bit, and we're beginning to enjoy the thought of not having to dodge them every day, but one morning another rattlesnake suddenly turns up on our front doorstep, how do we react? Why we fall all over ourselves trying to get rid of the darn thing, and for a couple of weeks, we're about 10 times as cautious and anxious as we ever were back when the yard was full of snakes. It's just human nature.
When our senses are flooded with information, from every direction, we eventually begin to "tune it all out", in order to get on with life, as best we can, and we refuse to concentrate on it, (because we realize that it's more than we can effectively deal with). On the other hand, if we only have one major aggravation, we glom onto it, and it seems to demand our attention, and we become consumed with thoughts about how to resolve it. The immune system seems to behave in a similar fashion.
Hmmmmmmm. I seem to have become more than slightly side-tracked here, but hopefully you can get the gist of what I'm trying to say. I guess what I'm trying toi say is that since he doesn't have a celiac gene, unless he is already showing clinical symptoms of gluten-sensitivity, there appear to be other more important things to worry about, at the moment. Even if he does show signs of food-sensitivity issues, I would look at dairy products first, and gluten second. Of course, considering the diabetes risk, a GF diet would fit right in with the goal of taking steps to try to minimize the risk of developing diabetes.
And, of course, as Sara so eloquently points out - there's nothing particularly great about wheat as a source of nutrition. It's just another grain, that happens to be particularly suitable for baked goods. Nutrition-wise, it's certainly not a wonder food, nor even a complete food. And in it's modern form, it's most often available in the form of junk food. With it's high glycemic index, it's contraindicated for anyone with a risk of developing diabetes. So - who needs it?
Tex
Like you, unless he is showing obvious clinical symptoms of gluten-sensitivity, I would be more concerned about casein-sensitivity, and/or the risk of developing diabetes.
The decision of whether or not to avoid gluten is much more complex than meets the eye. Here's the complicated part of cutting gluten out of an infant's diet: If he is not yet developing any antibodies to gliadin, or any of the glutenins in wheat, then eliminating gluten from his diet will certainly postpone any possible future sensitivity to gluten, and it will also increase the odds that when gluten is eventually introduced into his diet, (when he is older), he will be less likely to develop a sensitivity to it. However, as far as the short term is concerned, if he has no clinical symptoms, then removing gluten from his diet would be sort of a moot point, (in the short term).
On the other hand, if he is already showing clinical symptoms of gluten-sensitivity, then he is obviously producing antibodies to gliadin/glutenins, and in that case, removing gluten from his diet will stop the symptoms, but it will also make him more sensitive to it, so that if he accidentally ingests even traces of gluten in the near future, his reactions will be more serious than they would have been if his mother had simply allowed gluten to remain in his diet. That may seem counterintuitive, but it's true, unfortunately.
When gluten is withdrawn from the diet, the immune system continues to search for it for at least a couple of years, (by producing antibodies). With nothing else to occupy it's full attention, the immune system is like a well-trained soldier, anxious and waiting for the attack that he knows is inevitable. The immune system is primed and ready to pounce, and when it detects that gluten is back in the diet, it will attack even a trace of gluten with all the resources it has available to it - whatever it feels will help to drive out the "foreign invaders", once and for all. IOW, it will overreact. That's why diet slipups cause such major reactions for most of us. Our immune system becomes more aggressive than it was before we eliminated gluten from our diet.
Look at it this way. If our back yard is full of rattlesnakes, that's definitely a PITA, but we eventually get sort of used to them, and we tend to work around them, and every day becomes routine, and we view them as sort of "business as usual". On the other hand, if we manage to get rid of all of them, and things start to settle down a bit, and we're beginning to enjoy the thought of not having to dodge them every day, but one morning another rattlesnake suddenly turns up on our front doorstep, how do we react? Why we fall all over ourselves trying to get rid of the darn thing, and for a couple of weeks, we're about 10 times as cautious and anxious as we ever were back when the yard was full of snakes. It's just human nature.
When our senses are flooded with information, from every direction, we eventually begin to "tune it all out", in order to get on with life, as best we can, and we refuse to concentrate on it, (because we realize that it's more than we can effectively deal with). On the other hand, if we only have one major aggravation, we glom onto it, and it seems to demand our attention, and we become consumed with thoughts about how to resolve it. The immune system seems to behave in a similar fashion.
Hmmmmmmm. I seem to have become more than slightly side-tracked here, but hopefully you can get the gist of what I'm trying to say. I guess what I'm trying toi say is that since he doesn't have a celiac gene, unless he is already showing clinical symptoms of gluten-sensitivity, there appear to be other more important things to worry about, at the moment. Even if he does show signs of food-sensitivity issues, I would look at dairy products first, and gluten second. Of course, considering the diabetes risk, a GF diet would fit right in with the goal of taking steps to try to minimize the risk of developing diabetes.
And, of course, as Sara so eloquently points out - there's nothing particularly great about wheat as a source of nutrition. It's just another grain, that happens to be particularly suitable for baked goods. Nutrition-wise, it's certainly not a wonder food, nor even a complete food. And in it's modern form, it's most often available in the form of junk food. With it's high glycemic index, it's contraindicated for anyone with a risk of developing diabetes. So - who needs it?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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MBombardier
- Rockhopper Penguin
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- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Thanks, Tex, I am going to pass this on to my friend. She called me today and confirmed that she was diagnosed with celiac via endoscopy, and that she has one celiac gene and the GS gene she passed to her son. she went to the GI yesterday, who was concerned with her pain and her symptoms enough to schedule her for an upper and lower scope on Thursday. She asked "What's next?" if she is diagnosed with MC, so I may be introducing her to you in about three weeks.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Marliss,
My heart truly goes out to her - dealing with symptoms and concern while pondering her little one's heart surgery.
Wish I were close enough to cook something GF/DF/?F for the whole family.
She's lucky to have you - imagine how lost in the forest she would be without the friendship and shared personal experience.
Love,
S
My heart truly goes out to her - dealing with symptoms and concern while pondering her little one's heart surgery.
Wish I were close enough to cook something GF/DF/?F for the whole family.
She's lucky to have you - imagine how lost in the forest she would be without the friendship and shared personal experience.
Love,
S
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MBombardier
- Rockhopper Penguin
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- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Sara, if you were to cook for their family, you would be put on your mettle, that's for sure. They have several children. My friend is one of the sweetest, kindest, most caring women I have ever known, always putting others before herself. Knowing I am new to the GF lifestyle, she even made me a whole GF birthday cake for my birthday!
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011