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She tested the most symptomatic 2 of her 3 kids, for financial reasons. The investment in the gene tests couldn't have been more helpful, because she managed to hit all four possible HLA alleles in testing those two kids. So now she knows there are 4 GS genes in play, one of which is celiac.
She doesn't mind sharing them - but her kids don't have MC, so I won't add the whole thing here (as it doesn't technically belong in "our" results). Let's hope they never DO have MC - nor their mother's adult-onset Type 1 diabetes, because their diets are going on a big diet (quite a back-to-school event).
Her son (short stature, skin-and-bones, bone pains, brain fog):
HLA-DQB1 Molecular analysis, Allele 1 0202
HLA-DQB1 Molecular analysis, Allele 2 0604
Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)
His gluten results were a decisive 24; his casein result was normal, and soy and eggs were both 10 (but mom is sure he reacts to soy).
Her daughter (migraines, asthma, ADD, behavioral/mood struggles):
HLA-DQB1 Molecular analysis, Allele 1 0201
HLA-DQB1 Molecular analysis, Allele 2 0301
Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)
Her gluten results - 174, milk 46, egg 22, soy 39.
Wow, huh? I am so very proud of my friend for taking the bull by the horns and getting this testing done.
They were over here the other night for dinner, and her son was particularly excited about the "meat cupcakes" we were making, so she has a pretty good inspiration for a GF dinner to celebrate the big news. The kids aren't happy about it, understandably. It will take some time to get adjusted, I'm sure.
Thanks for listening. I'm as WOWed by their results as I was about my own, or one of "ours" here on the forum. It's just great that they know this so young (though not great they're already experiencing symptoms).
--Sara
My friend's kids got their Enterolab results
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Sara,
That's very impressive, and it's especially noteworthy that even though they already have symptoms of several diseases, (or diseases in the making), at least they're hopefully catching this before celiac disease, MC, osteoporosis, RA, or whatever, has a chance to make their lives a lot more unpleasant. Knowledge is power, especially when it comes to long-term health.
It will be interesting to see how much the diet will improve their long-term prognosis. Hopefully, they'll take it seriously enough to turn their health around.
Thanks for sharing,
Tex
That's very impressive, and it's especially noteworthy that even though they already have symptoms of several diseases, (or diseases in the making), at least they're hopefully catching this before celiac disease, MC, osteoporosis, RA, or whatever, has a chance to make their lives a lot more unpleasant. Knowledge is power, especially when it comes to long-term health.
It will be interesting to see how much the diet will improve their long-term prognosis. Hopefully, they'll take it seriously enough to turn their health around.
Thanks for sharing,
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.
Thanks, from the bottom of my heart, for your kind thoughts for my friends. These are young kids (turning 8 and 10 this fall). That's old enough to understand and care, but not old enough to withstand the flood of processed food at schools, birthday parties, etc. It's really good that no one yet has a more serious diagnosis (I have left out the story of the other twin, who was Dx with a rare cancer at 3mos... he's doing great on every level, mercifully).
I think if I didn't have obvious a digestive disaster going on, it might have been harder for me to believe that *absolutely* no gluten was the answer, as opposed to... how much of a migraine, or backache, or - whatever - am I willing to put up with. That's going to be tough for them to manage, for sure.
I'll be interested to see whether the parents will be able to wrap their minds around the implications for *themselves* - because, if I were the T1D mom, I wouldn't touch gluten, ever. But - easy for me to say! since it's already true for me.
I think she's feeling vindicated at the moment, and relieved to have some answers for her kids, troubling as it may be. But if she orders a beer when we meet up to hear some friends play music later in the week, I'm already reminding myself to mind my manners and facial expression.
These kids can so surely get their life back, though ironically their relatively low-grade struggles may make it harder to fight for that life, though easier to achieve. It is interesting to me that the more obviously struggling kid had the lower numbers, and the 2 non-celiac genes. My fellow 0201-er, her daughter, may just be more mature in presentation, so a family friend might be missing some of what's really going on there.
Anyway - GO MOM! for making this happen. It was a big investment and a big decision, and as we're in NY state, she had to travel out of state (had the test kits sent to relatives and then went to visit them... and get her kids to poop in a funny cup while on vacation).
Truly, thank you all. I know she saw what happened with me, because of my learning and comradeship here, and it was galvanizing to her decision.
Much love,
Sara
I think if I didn't have obvious a digestive disaster going on, it might have been harder for me to believe that *absolutely* no gluten was the answer, as opposed to... how much of a migraine, or backache, or - whatever - am I willing to put up with. That's going to be tough for them to manage, for sure.
I'll be interested to see whether the parents will be able to wrap their minds around the implications for *themselves* - because, if I were the T1D mom, I wouldn't touch gluten, ever. But - easy for me to say! since it's already true for me.
I think she's feeling vindicated at the moment, and relieved to have some answers for her kids, troubling as it may be. But if she orders a beer when we meet up to hear some friends play music later in the week, I'm already reminding myself to mind my manners and facial expression.
These kids can so surely get their life back, though ironically their relatively low-grade struggles may make it harder to fight for that life, though easier to achieve. It is interesting to me that the more obviously struggling kid had the lower numbers, and the 2 non-celiac genes. My fellow 0201-er, her daughter, may just be more mature in presentation, so a family friend might be missing some of what's really going on there.
Anyway - GO MOM! for making this happen. It was a big investment and a big decision, and as we're in NY state, she had to travel out of state (had the test kits sent to relatives and then went to visit them... and get her kids to poop in a funny cup while on vacation).
Truly, thank you all. I know she saw what happened with me, because of my learning and comradeship here, and it was galvanizing to her decision.
Much love,
Sara
Wow, please let me know how the mood and related issues change with the diet. I have a close family friend with an 8 yr old boy who suffers from eczema, allergies, oppositional defiance disorder, and learning difficulties at school. Their snack of choice at home is pretzels and milk. I often wonder if a GF/DF diet would make an impact on his troublesome behavior problems, not to mention the immune issues. She witnesses my dietary constraints all the time, and surely feels sorry for me, but I wonder if she would do it, if she knew it could improve her son and family life.
Z,
My friend was wondering whether her daughter's wild mood swings and freakouts got up to the level of 'oppositional defiant disorder' - we just did some GF shopping and label reading (fun play date!). Her daughter is almost 10. Her almost-8yo son has had a recent deterioration in handwriting (I went mildly ape when I heard this), and just doesn't like to write any more. My friend is suddenly really P.O.ed - why weren't her kids tested for this? (Of course, if they had been, we all know the bloods would have been negative.) If she had been seeking drugs (of almost any kind - Ritalin, anti-depressants, you name it), there's no doubt some doctor would have prescribed them - the possibility was mentioned, more than once.
I think the key for your friend's 8yo son might be a sympathetic pediatrician. I know another mom with a son on the autism spectrum; their other kids have learned to say, "mommy, I don't think L should eat this!" Her son responded very quickly to GF/CF diet, which really helps keep the motivation up. I think there's growing awareness out there, and less willingness to just say "will grow out of it" or "normal/age appropriate" when it's not.
I feel sorrier for the kid than I feel for you (and you have all my sympathy!). You're getting better. Kids really don't want to be out of control, much as it sometimes looks willful. I hope the mother's open - what a tough conversational line to walk, or not walk.
My friend was wondering whether her daughter's wild mood swings and freakouts got up to the level of 'oppositional defiant disorder' - we just did some GF shopping and label reading (fun play date!). Her daughter is almost 10. Her almost-8yo son has had a recent deterioration in handwriting (I went mildly ape when I heard this), and just doesn't like to write any more. My friend is suddenly really P.O.ed - why weren't her kids tested for this? (Of course, if they had been, we all know the bloods would have been negative.) If she had been seeking drugs (of almost any kind - Ritalin, anti-depressants, you name it), there's no doubt some doctor would have prescribed them - the possibility was mentioned, more than once.
I think the key for your friend's 8yo son might be a sympathetic pediatrician. I know another mom with a son on the autism spectrum; their other kids have learned to say, "mommy, I don't think L should eat this!" Her son responded very quickly to GF/CF diet, which really helps keep the motivation up. I think there's growing awareness out there, and less willingness to just say "will grow out of it" or "normal/age appropriate" when it's not.
I feel sorrier for the kid than I feel for you (and you have all my sympathy!). You're getting better. Kids really don't want to be out of control, much as it sometimes looks willful. I hope the mother's open - what a tough conversational line to walk, or not walk.
Wow, Sara. Does that mean both the mom and dad have gluten intolerance too? Neither of the children have the 0302 celiac gene. I wonder if your friend's diabetes was not caused by the 0302? These genes really confuse me. I really hope the children respond quickly to the diet changes.
Hugs,
Hugs,
Denise
"Be the change you want to see in this world."
Mahatma Gandhi
"Be the change you want to see in this world."
Mahatma Gandhi
Denise,
I was betting on that 0302 as well. The mom has read that one of the other genes can also be implicated in T1D - I am not sure which one. She's going to talk the results over with her endocrinologist, and pediatrician (and she was already considering a pediatrician switch to someone who's very aware of food intolerances, and has a great reputation). Her T1D started as gestational diabetes and was misdiagnosed for a long time as T2D, just to make it all more confusing. She does not have an 0302 gene, as that wasn't one of the ones her kids have.
With 4 out of 4 GS genes, it does mean that both parents have 2 GS genes (only one celiac, and we have been assuming it's mom... but that's not necessarily true). Also - all 4 grandparents contributed one of those! So they also have at least one. Apparently one of the grandmothers is a real researcher at heart, and I think that will help because she will research, and ponder what it might mean for all three of these generations. I think the mother thinks she's doing great (meaning, she's using to having T1D, migraines, etc.). I'm guessing she won't know how good she can feel till she feels better herself.
I hope the kids respond quickly, too. Interestingly, the younger guy is the one with lower antibody results, and no celiac gene, and he is in many ways suffering more. So that definitely supports our experience, that you don't need a 'true' celiac gene to be very ill indeed from gluten intolerance. Mom's sense is that his issues have been accelerating (sheesh, deteriorating handwriting at 7yo!!), and his twin reported that he'd had diarrhea yesterday (the first morning after the test) - but she's not sure what it means when kids tell on each other's poop habits, and maybe they just cottoned on to the notion that that's a related factor.
If you come across great resources for kid-friendly GF/DF/SF/etc.F foods, as you help your son, please let me know! There are some good paleo kids sites, but many of them do include eggs. I sent her a cookie recipe this morning, and she has all the ingredients in the house, thanks to our shopping excursion yesterday, so she's feeling more hopeful. (She had just filled the freezer with snacks from Costco, 100% of which she now has to throw out or give away... I think that must have been the last burst of denial before the test results came in?)
Thanks for your kind wishes for them.
Love,
Sara
I was betting on that 0302 as well. The mom has read that one of the other genes can also be implicated in T1D - I am not sure which one. She's going to talk the results over with her endocrinologist, and pediatrician (and she was already considering a pediatrician switch to someone who's very aware of food intolerances, and has a great reputation). Her T1D started as gestational diabetes and was misdiagnosed for a long time as T2D, just to make it all more confusing. She does not have an 0302 gene, as that wasn't one of the ones her kids have.
With 4 out of 4 GS genes, it does mean that both parents have 2 GS genes (only one celiac, and we have been assuming it's mom... but that's not necessarily true). Also - all 4 grandparents contributed one of those! So they also have at least one. Apparently one of the grandmothers is a real researcher at heart, and I think that will help because she will research, and ponder what it might mean for all three of these generations. I think the mother thinks she's doing great (meaning, she's using to having T1D, migraines, etc.). I'm guessing she won't know how good she can feel till she feels better herself.
I hope the kids respond quickly, too. Interestingly, the younger guy is the one with lower antibody results, and no celiac gene, and he is in many ways suffering more. So that definitely supports our experience, that you don't need a 'true' celiac gene to be very ill indeed from gluten intolerance. Mom's sense is that his issues have been accelerating (sheesh, deteriorating handwriting at 7yo!!), and his twin reported that he'd had diarrhea yesterday (the first morning after the test) - but she's not sure what it means when kids tell on each other's poop habits, and maybe they just cottoned on to the notion that that's a related factor.
If you come across great resources for kid-friendly GF/DF/SF/etc.F foods, as you help your son, please let me know! There are some good paleo kids sites, but many of them do include eggs. I sent her a cookie recipe this morning, and she has all the ingredients in the house, thanks to our shopping excursion yesterday, so she's feeling more hopeful. (She had just filled the freezer with snacks from Costco, 100% of which she now has to throw out or give away... I think that must have been the last burst of denial before the test results came in?)
Thanks for your kind wishes for them.
Love,
Sara