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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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    • For the brown rice, it could be the fiber (assuming you mean whole grain rice, which still has husk on it). If I have been glutened recently, whole grain brown rice and other fibrous foods are not digested well by my GI tract. Because I get non-GI symptoms, I am quite sure that the cause is not gluten. You might stay away from whole grain rice for a bit, or transition slowly (mix white/whole grain in increasing proportions as tolerated). For pork, it is unlikely that the type of feed would have an influence on the gluten content of the meat. Gluten is not transferred into the muscle (meat) or eggs of animals. It stays in the GI tract. There could be some small chance of contamination from the GI tract during butchering. I don't know much about commercial butchering/abattoirs, but I think that this is heavily guarded against due to the risk of fecal contamination. Sometimes, the thing we think is making is sick is in fact not - sometimes it is something else that we do in association with that food. Perhaps there is a seasoning that you use with pork, or perhaps you use certain kitchen tools for pork that are contaminated. I used to always get sick when I cooked butternut squash. It was because I was using a hacksaw to cut them, which was contaminated with drywall (drywall contains wheat). If you are buying your meat from a small, independent butcher (where they bread/flour meat in-store), you might think about switching to buying big box grocery meat. At big box grocery stores, they just section up the meat that is pre-butchered. You could also be allergic to pork - this is rare, but some people are (especially those who are allergic to cats). Hope this helps.  
    • What pigs eat would note really get to your eating their meat, this might be different with something that you can not clean out well or eat part of the digestive tract like farmed crayfish, shrimp, or poorly cleaned fish/chicken. But pork...unless your eating part of the intestines the meat should not bother you if they ate even pure wheat.

      Brown rice, this could be a issues with CC, starches, fiber etc.  There have been major CC issues with grains and legumes in recent months. I suggest sticking to a safer brand like Lundenburg and or visually sorting your rice, and washing it before cooking it. Again it could also be a fiber issues or starches.

      Other thoughts some people bit by a lone star tick develop allergies to pork and or beef.

      Some people are just intolerant to certain foods, and we can develop many food sensitivities to just about anything with this disease. Often new or certain food intolerance can be linked to something we ate when we ate gluten and our body just has a associative issue that might go away in a few years. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Brown Rice and pork are meant to be gluten free yet they set me off. Pork I reckon is due to them eating cereals.  Brown rice I have no idea although white is fine . Does anyone else get set off by them or is my body just strange?
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    • Hi Mavis, Celiacs are often low on Vitamin D, vitamin B-12, and sometimes iron, and selenium. Wheat is pretty popular here too.  But there are other options like rice and buckwheat, quinoa, etc.
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