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dkelley

12 Year Old Son Diagnosed, No Symptoms

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My son was diagnosed with Celiac Disease on 02/07/2012. The diagnosis was based on blood work and a biopsy. He has never suffered any of the normal outward signs of Celiac and was only tested because he has always been small and had a 6 month period where he did not gain any weight. He has now been gluten free for just over 2 weeks and is adjusting well.

The concern that I have is that since he does not have the symptoms, how can I be sure that he is truly not eating gluten? I have read so many comments about the fear of cross contamination, as well as about hidden ingredients in some food. From what I have read most people’s body will tell them that something is off and they can learn from that experience. Does anyone have any advice on how we can be sure he is gluten free? Will we just have to wait for his next blood test in 6 months and hope that his levels have come down?

Thank you for the feedback. I have read many discussions on this forum and I have learned so much.

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My son was diagnosed with Celiac Disease on 02/07/2012. The diagnosis was based on blood work and a biopsy. He has never suffered any of the normal outward signs of Celiac and was only tested because he has always been small and had a 6 month period where he did not gain any weight. He has now been gluten free for just over 2 weeks and is adjusting well.

The concern that I have is that since he does not have the symptoms, so how can I be sure that he is truly not eating gluten? I have read so many comments about the fear of cross contamination, as well as about hidden ingredients in some food. From what I have read most people

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Janet

Thank you for the quick response. I guess we are in a "wait and see" mode. He has been very good about the whole thing, which has made life a lot easier on all of us.

I do have one question off topic. From your signature. What is DQ2 Positive?

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My 6 year old also does not get many symptoms. His main symptom is bad behavior which is sometime hard to tell . . . is he just being bad or is he being "gluten" bad? Over time, he has become more sensitive to even smaller amounts. The only symptoms I have noticed is a rash/irritation around his mouth (like chapped lips) and smelly gas.

We basically just had to wait until his 6 month blood test. I am gluten-free too, so I thought we were doing a GREAT job. His numbers didn't go down significantly so the doctor told us to "step it up" a level. Now we avoid the "processed in a facility with wheat" products and he uses a placemat when eating his lunch (from home) in the school cafeteria. We don't eat out unless it is a dedicated gluten-free place - we used to just choose the gluten-free items from the menu. He gets tested again in April so we will see if our hard work is paying off.

It can take up to a year for the numbers to go down.

Cara

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I do have one question off topic. From your signature. What is DQ2 Positive?

When my daughter was diagnosed, all of us in the immediate family were screened. My son is on the small side and my daughter's pedGI was particularly concerned about him. Part of his testing included the gene testing. There are two common genes for Celiac, DQ2 and DQ8. The majority (but not all) of those people who are diagnosed carry one of those genes. However, about a third of the population carries one of those genes. Just because you carry the gene does not mean you will develop Celiac disease. It just means that the person may have a predisposition for developing Celiac at sometime in their life. In my son's case, he has one of the genes but no symptoms. Since he was on the small side and my daughter was already gluten free, it was not a hardship for us to put him on a six month trial diet, looking solely to see if he would have some sort of a growth spurt . . . he did not. At any point in his life, should he develop any kind of symptom, he'll be screened again.

The fact that my son has a DQ2 gene means that either his father or I (or possibly both) carry the gene as well. When we were screened by our GP, the gene test was not included so we don't know which side it is coming from. My daughter is the first one in the family to be diagnosed and there are a sprinkling of digestive issues on both sides of our two good-sized families.

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When my daughter was diagnosed, all of us in the immediate family were screened. My son is on the small side and my daughter's pedGI was particularly concerned about him. Part of his testing included the gene testing. There are two common genes for Celiac, DQ2 and DQ8. The majority (but not all) of those people who are diagnosed carry one of those genes. However, about a third of the population carries one of those genes. Just because you carry the gene does not mean you will develop Celiac disease. It just means that the person may have a predisposition for developing Celiac at sometime in their life. In my son's case, he has one of the genes but no symptoms. Since he was on the small side and my daughter was already gluten free, it was not a hardship for us to put him on a six month trial diet, looking solely to see if he would have some sort of a growth spurt . . . he did not. At any point in his life, should he develop any kind of symptom, he'll be screened again.

The fact that my son has a DQ2 gene means that either his father or I (or possibly both) carry the gene as well. When we were screened by our GP, the gene test was not included so we don't know which side it is coming from. My daughter is the first one in the family to be diagnosed and there are a sprinkling of digestive issues on both sides of our two good-sized families.

Thank you. That actually answers a few other questions we have. My wife and I were tested, as well as our 9 year old daughter. We all tested negative. Is the gene testing recommended in this situation. I suspect that it may only tell us if one of us carries the gene and if our daughter is predisposed to Celiac.

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Is the gene testing recommended in this situation. I suspect that it may only tell us if one of us carries the gene and if our daughter is predisposed to Celiac.

Some doctors want to do gene testing some don't. I'm not sure why my son's doc wanted the gene info. I think just to see if it was something we needed to keep an eye on down the road. However, even if I didn't know he had a Celiac gene, if my son were to developed any kind of symptom that I now associate with Celiac, then I would have him retested just because we now have it in the family. And as you look around the board, you'll see a lot more symptoms than you read about when you intially Googled "Celiac Disease".

Some individuals get the gene testing done after the Celiac panel and/or biopsy comes back negative to try to rule out false negatives. A large percentage of the population carries one of the genes and never develops the disease. I consider it another puzzle piece . . . useful for some, not necessary for others. If our insurance hadn't paid for (most) of it, we wouldn't have had it done.

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My DD was dx'd a year ago & had no GI symptoms but she hadn't grown since her prior checkup so "failure to thrive" was marked on her chart as she was sent to the endocrinologist for further eval. Anyway, it took me a while to digest it & she went gluten-free starting in jun & started to grow. She grew 2.5 inches & jumped 2 sizes in shoes in like 3 mths.

She just had her 1 yr blood tests & her levels were all in normal range as far as antibodies for gluten. So I am happy that we are doing something right. I know a few times she might've ingested gluten over the past 8 mths but had no reaction. I use a separate toaster, she brings lunch to school, & always asks if in doubt if she can have something at a friends.

Your son will most likely get glutened or cross contaminated until you get the hang of it. Everything must be separate, butter, condiments like mustard mayo as they can be contaminated from dipping glutened knife, stainless steel pots, or if using a coated pot--all new pots for him as gluten can get into the scratches, his own colander, etc.

Read the threads on cross contamination that is what you gotta get the hang of. Be prepared for mistakes, & learn from them. Teach your son how to read labels & if he is embarrassed around his friends there are plenty of gluten-free goodies he can eat around them & he won't feel different--popcorn, lays chips, snickers, hersheys & lots of other candy, (read labels) snyders gluten-free pretzels, gluten-free pizza, gluten-free cupcakes cookies & brownies, etc. He can have Mcd Fries & sundaes, (nothing added like oreos) grilled chicken & fries @ chickfila or chili & baked potato @ wendys.

No sit back & watch your son grow.

Good luck!

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My DD was dx'd a year ago & had no GI symptoms but she hadn't grown since her prior checkup so "failure to thrive" was marked on her chart as she was sent to the endocrinologist for further eval. Anyway, it took me a while to digest it & she went gluten-free starting in jun & started to grow. She grew 2.5 inches & jumped 2 sizes in shoes in like 3 mths.

She just had her 1 yr blood tests & her levels were all in normal range as far as antibodies for gluten. So I am happy that we are doing something right. I know a few times she might've ingested gluten over the past 8 mths but had no reaction. I use a separate toaster, she brings lunch to school, & always asks if in doubt if she can have something at a friends.

Your son will most likely get glutened or cross contaminated until you get the hang of it. Everything must be separate, butter, condiments like mustard mayo as they can be contaminated from dipping glutened knife, stainless steel pots, or if using a coated pot--all new pots for him as gluten can get into the scratches, his own colander, etc.

Read the threads on cross contamination that is what you gotta get the hang of. Be prepared for mistakes, & learn from them. Teach your son how to read labels & if he is embarrassed around his friends there are plenty of gluten-free goodies he can eat around them & he won't feel different--popcorn, lays chips, snickers, hersheys & lots of other candy, (read labels) snyders gluten-free pretzels, gluten-free pizza, gluten-free cupcakes cookies & brownies, etc. He can have Mcd Fries & sundaes, (nothing added like oreos) grilled chicken & fries @ chickfila or chili & baked potato @ wendys.

No sit back & watch your son grow.

Good luck!

Thank you for the advice. Those are some very positive sounding results. Hoping my son has a similar experience.

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    Imagine a gluten-sniffing dog that performed as well as Nima in scientific trials; same performance, same exact data. 
    You can give this dog a sniff, or a small bite of food, and he can signal you if the food’s got gluten in it with 97% accuracy at 20ppm or below. Nearly 100% accuracy at 40ppm or above (as stated by Gluten Free Watchdog).
    People would think that the dog was not only cute and fluffy, but wonderfully helpful and everyone would love it, and everyone with celiac disease would want one. And it would be a great big gushing warm and fuzzy feel-good story. Pretty much no one would be arguing that the dog was potentially dangerous, or somehow unfit for people with celiac disease. Such dogs would also be far more expensive to own and maintain than the Nima device. Apparently such dogs can cost upwards of $16,000, not including the cost of food, vet bills, etc.
    So, what’s the accuracy rate of a gluten-sniffing dog, anyway? From Mercola.com: Willow, a German shorthaired pointer, is another gluten-sniffing dog, in this case living in Michigan. Her owner, Dawn Scheu, says she can detect gluten with 95 percent to 98 percent accuracy. She worked with a trainer (the same one who trained Zeus) to teach her own dog to detect gluten, with excellent results.
    Gluten-sniffing dogs may detect gluten in amounts as small as .0025 parts per million with 95 percent to 98 percent accuracy. So, will Gluten Free Watchdog be warning against gluten-sniffing dogs anytime soon?
    Somehow, because Nima is a mechanical device made by a company, it's not so warm and fuzzy, not so feel-good. Maybe Nima needs to shape their device like a cute little doggy, or a Pez candy dispenser?
    But the data remains, as does the fact, whatever its drawbacks, anything that detects gluten like Nima does, as well as it does, is potentially very helpful for celiac disease in numerous situations. And it is extremely unlikely to do them any harm.
    Nima seems very much committed to transparency, scientific excellence, and continual product improvement. These are noble goals and generally a win for people with celiac disease. Think of it, just ten years ago, a portable gluten-sensor with the kind of accuracy Nima is reliably achieving would have been the stuff of fantasy. Yet here it is. More accurate than any gluten-sniffing dog, and for a couple hundred bucks. People with celiac disease are living in a very different world than just a few years ago.
    Nima did not have to publish its data, but it chose to do so, and in a reputable, peer-reviewed scientific journal. Nima conducted its research using solid scientific standards, and reported those results publicly. They explained their methodology and results, they acknowledged product limitations and expressed a commitment to improvement. How is this remotely controversial?
    The celiac disease community is fortunate to have companies committed to investing time and money into products and devices that help to improve the lives of people with celiac disease. We feel strongly that the perfect should not be the enemy of the good. Devices like the Nima gluten sensor can be helpful for numerous people with celiac disease.  
    Disclosure: Nima is a paid advertiser on Celiac.com. Celiac.com's advertisers do not influence our editorial content. 
    Read Nima’s full report on test data at: Food Chemistry.com Read Gluten Free Watchdog’s Statement on the Nima device at: Glutenfreewatchdog.org Read Nima’s Reply to Gluten Free Watchdog at: Nimasensor.com