Teenager Going Gluten Free?

[cyberprof]

Hi everyone,

I was diagnosed by biopsy in February and have felt better, not perfect but better than in a long time ('m 44 and have probably had celiac disease for 20 years). My blood-work was negative and my biopsy showed no blunting or damage but it did show classic celiac immune response.

My DS, who is 14, is active and smart but for the past two years I've thought (mother's intuition) that he wasn't as "hardy" as he should be and his growth is slow. Dr. agreed and tested him for anemia, diabetes, CBC (leukemia, infection etc). Of course, I didn't know about celiac then. After my diagnosis, I knew I wanted DS tested, so he had the blood-work done, it was negative. Given that I've seen statistics saying that only 30% of people with active celiac disease have positive blood-work, I talked again to his doc. Doc says, yes, he's slipped from 75th percentile in height to 25% and weight is low too. DS has diarrhea a couple times a week, canker sores (just like me growing up), discolored teeth (dentist sealed the molars) and lots of gas and stomach gurgles. He's 14.5 years old and is 5'4" and has not entered puberty yet, so people always think he looks like he's 12.

Doc was nice and gave us a referral to Children's in Seattle and says that the endoscope is the way to go. My DH, DS's dad, is vetoing that, for several reasons, all of which are understandable. 1) He's scared of DS dying during/after the endo. General anesthesia is always a risk and 2) It's not like DH wouldn't agree to it if it were cancer or heart disease, something where you need intervention or a firm diagnosis to treat. DH says, he can just go on the diet and 3) DH says that it would be beneficial to NOT have a celiac diagnosis on DS's medical record.

DH is pretty supportive of my celiac disease and he himself has followed the Paleo diet for the past 3 years after he was diagnosed with a dormant form of leukemia, which has a very high death rate and very little effective treatment. DH hopes that he will stave off the leukemia with the Paleo diet. So, like I said, DH has the best intentions and he does know the benefits of Paleo (except he gets to have beer and pizza whenever he wants).

The problem is DS doesn

[par18]

Hi,

Just read your post. I understand where you DH is coming from. If in fact your son's problem is gluten related then the only way he will show signs of improvement is getting on the diet. Is your son interested in "growing" if it is possible? I spent most of my life undersized for my height. It was only after going gluten free that I began to become bigger and stronger. I am at the proper weight for my height for the first time in my life. That said I still see the issue with your son not starting something like the diet without an "official" diagnosis.

This is in my opinion the toughest type of situation facing families as opposed to individual adults. Adults make the decision to further testing or starting the diet on their own. The children may or may not have any say in the direction process. You might attempt to see how your son's symptoms are affecting his lifestyle now and use it as a guide to which way you go (more testing or diet). The one thing I have found most interesting about people's reaction to possibly starting the gluten-free diet is that some say they would have a hard time with the lifestyle change. I then learned that they were already altering their lifestyle by staying home close to the bathroom. I was freed from this after going gluten free and having my symptoms disappear. I never even think of my main pre-diagnosis symptom (diarrhea) since being on this diet the past 2 plus years. I don't have it anymore. I just wish I had started it about 10 years sooner.

If I were you I might list the pros and cons (with your son's input) and see what all of you might come up with as the most logical course of action first. You can always adjust. Good luck.

Tom

[Eriella]

Hello,

Without a firm diagnosis, it is really hard to get schools to be accommodating and friends to get it. However, I have a diagnosis based on dietary response and family history alone and everything has worked out well for me.

The good news is, pretty much everyone in my peer group (I am in college) has heard of it. When they see me getting some sort of special food their first question is always, "is it gluten? My friend/brother... has that". I have never gotten any pressure at school about eating any gluten and everyone gets it. As a sidenote, I should mention that I go to a very upper-/upper-middle class college where students have socialized with those who have had the health insurance and good doctors, so they are more likely to get diagnosed. When I go to home to poverty-stricken Appalachia, no one has heard of it and it is very different.

There are two different ways you can approach this that I have seen work: either convince him that he needs to be 100% gluten free and teach him what questions to ask and how to approach the situation, have him be 100% gluten free in the house and convince him to be "gluten light" (not worrying about cross contamination or hidden gluten) outside of the house. Although the second option would make a lot of people on this board upset because if you have full-fledged celiac disease this would be problematic, for a lot of teenagers this is the best option. However, I tried this and found out that I am so sensitive that it didn't work for me, which ultimately convinced me to go 100% gluten free. My great-aunt, however, can scrape the gravy off the chicken and be fine (and yes my intestines hurt just thinking about it).

As far as peer pressure, bring snacks and the Thai Kitchen Noodle Carts wherever you go so he will have junk food to eat, and make sure your son is firm with whatever plan you take. Once he explains his "gluten thing" as just something that he has to do, people can be awesome. I have had friends figure out how to allow me to participate in traditional college activities without any cross contamination and even defend me not sharing my food with others or eating different food.

Also, help him find others with this. It helped me a great deal that another student and a secretary at school had a gluten issue. It is much easier to say "I have what ___ has and can't eat pizza".

Good luck!

[cyberprof]

Tom, thanks for the reply.

Yes, his growing as a benefit of the diet is the only thing that might convince him to try the diet. He is tired of being among the shortest and looking so young. It would help with sports too. And one of the neighbor kids who is younger and had always been small, shot up and got a fuzzy mustache and a deep voice in the past six months: DS has none of that.

The good news is that, at 14 and male, he may still have time to catch up in height, as males do grow in their later teen years, as opposed to females, who usually stop growing (or slow down) after they get their period.

Hi,

Just read your post. I understand where you DH is coming from. If in fact your son's problem is gluten related then the only way he will show signs of improvement is getting on the diet. Is your son interested in "growing" if it is possible? I spent most of my life undersized for my height. It was only after going gluten free that I began to become bigger and stronger. I am at the proper weight for my height for the first time in my life. That said I still see the issue with your son not starting something like the diet without an "official" diagnosis.

This is in my opinion the toughest type of situation facing families as opposed to individual adults. Adults make the decision to further testing or starting the diet on their own. The children may or may not have any say in the direction process. You might attempt to see how your son's symptoms are affecting his lifestyle now and use it as a guide to which way you go (more testing or diet). The one thing I have found most interesting about people's reaction to possibly starting the gluten-free diet is that some say they would have a hard time with the lifestyle change. I then learned that they were already altering their lifestyle by staying home close to the bathroom. I was freed from this after going gluten free and having my symptoms disappear. I never even think of my main pre-diagnosis symptom (diarrhea) since being on this diet the past 2 plus years. I don't have it anymore. I just wish I had started it about 10 years sooner.

If I were you I might list the pros and cons (with your son's input) and see what all of you might come up with as the most logical course of action first. You can always adjust. Good luck.

Tom

[cyberprof]

Eriella, (what a pretty name!)

You gave me some good ideas and some hope. I have told him that he can try "gluten-lite" outside the house and see, but I am like you. Once I went off gluten I became hyper-sensitive. But who knows, he may be different. I'm glad that they are accomodating you at college, as I worry about that. He is in a gifted HS program that will give him two years of college before HS graduation and I expect that he will go to a similar college to the one that you go to.

And your comment "yes my intestines hurt just thinking about it" is so funny! And I live on the Thai Kitchen noodles! They are great, aren't they?

Thanks for replying.

Hello,

Without a firm diagnosis, it is really hard to get schools to be accommodating and friends to get it. However, I have a diagnosis based on dietary response and family history alone and everything has worked out well for me.

The good news is, pretty much everyone in my peer group (I am in college) has heard of it. When they see me getting some sort of special food their first question is always, "is it gluten? My friend/brother... has that". I have never gotten any pressure at school about eating any gluten and everyone gets it. As a sidenote, I should mention that I go to a very upper-/upper-middle class college where students have socialized with those who have had the health insurance and good doctors, so they are more likely to get diagnosed. When I go to home to poverty-stricken Appalachia, no one has heard of it and it is very different.

There are two different ways you can approach this that I have seen work: either convince him that he needs to be 100% gluten free and teach him what questions to ask and how to approach the situation, have him be 100% gluten free in the house and convince him to be "gluten light" (not worrying about cross contamination or hidden gluten) outside of the house. Although the second option would make a lot of people on this board upset because if you have full-fledged celiac disease this would be problematic, for a lot of teenagers this is the best option. However, I tried this and found out that I am so sensitive that it didn't work for me, which ultimately convinced me to go 100% gluten free. My great-aunt, however, can scrape the gravy off the chicken and be fine (and yes my intestines hurt just thinking about it).

As far as peer pressure, bring snacks and the Thai Kitchen Noodle Carts wherever you go so he will have junk food to eat, and make sure your son is firm with whatever plan you take. Once he explains his "gluten thing" as just something that he has to do, people can be awesome. I have had friends figure out how to allow me to participate in traditional college activities without any cross contamination and even defend me not sharing my food with others or eating different food.

Also, help him find others with this. It helped me a great deal that another student and a secretary at school had a gluten issue. It is much easier to say "I have what ___ has and can't eat pizza".

Good luck!

[confusedks]

Hello,

I am 17 years old and without going into my lifetime of health problems, after finally ending up bed-ridden and going gluten free before testing, my doctor did diagnose me. It (being bed-ridden) was such a motivation for me to go gluten free that I would never go back on gluten or even gluten light.

I understand being gluten free in High School. It definitely is hard, but that is mostly because I am also dairy, soy, tree nut and peanut free. If I was just gluten free (not that that's not hard), it would be much easier. For him it would just be a matter of always having snickers, chee-tos, etc. in his locker at all times. It absolutely NOT impossible, just requires more planning.

As far as testing, if I could do it again, I would have waited to go gluten free to get testing for a "real" diagnosis. Since I didn't have a biopsy, etc. other doctors than my GP question my diagnosis and don't believe me. I understand your husband's point, but think of how many people go under and are fine. I was put under 2 times for epidural injections in the hospital without much choice and it wasn't a big deal at all. I woke up with many nursed around me and I was able to recover fine.

I hope you are able to come to a decision, but if he does have Celiac, he needs to be completely gluten free. I don't know if you said, has he had blood tests? Some people feel that is enough to go gluten free without a endoscopy.

If he wants to talk, you can PM me and I'll give you my email address. Also, where do you live? I am starting a support group, which may be a good thing for him.

Kassandra

[gfpaperdoll]

You can test thru Enterolab.com & it will not be on yuor insurance records,

& despite what people post here some doctors do accept that as a diagnosis.

[lenjac]

Boy can I relate with this. I have c/d and work at a school. If he realizes that he must be gluten-free (and he understands how it effects you) it will be a lot easier. 99% of the menu offered at my school is gluten loaded!!!! The cooks are excited on the days that I CAN eat and are becoming diligent about ready labels for me. I'm a school administrator in a large middle school, so I get to spend almost 2 hours a day in the cafeteria watching others eat...

Does your son eat school lunch or does he pack? Packing would definitely be easier for him to manage the peer pressure of everyone eating chicken nuggets, pizza, spaghetti...the typical cafe. fare.

Once he loses his cravings for the other foods it will also get a lot easier.

Good luck!

Jackie

[cyberprof]

Thanks, I've considered enterolab, but I'm not sure if I trust them, at least to spend my money on. Plus the collection process grosses me out. (??You're supposed to put it in YOUR FREEZER until you fill it up???!!) I guess if the doc is uncooperative and DS still needs some convincing we may consider it. Or we might do the Prometheus labs and pay out of pocket for that.

You can test thru Enterolab.com & it will not be on yuor insurance records,

& despite what people post here some doctors do accept that as a diagnosis.

[cyberprof]

Thanks Jackie.

That's hard, watching others eat. I'm getting used to it.

He eats a home-packed lunch 95% of the time. Now I think it will be 100%. I think I will use the wide-mouth thermos idea like someone said on this parent's forum. Chili, leftover (gluten-free) spagetti and meatballs, soups, etc. Usually his lunch is a combination of: Lara Bar or a Zone Bar, an apple/banana/grapes, fruit roll-up, cheese stick, sometimes leftover pizza, a bagel, a lunchmeat sandwich. He and I both love Lara Bars and there are 2-3 Zone bars that are gluten-free and haven't given me trouble. If he wants, I'll master some sandwich bread (I'm trying to lose weight, so I don't eat many replacement gluten-free products, except as an occasional treat). I like to cook, so I promised him I'd master homemade pizza. My old gluten-free pizza was a family favorite.

Boy can I relate with this. I have c/d and work at a school. If he realizes that he must be gluten-free (and he understands how it effects you) it will be a lot easier. 99% of the menu offered at my school is gluten loaded!!!! The cooks are excited on the days that I CAN eat and are becoming diligent about ready labels for me. I'm a school administrator in a large middle school, so I get to spend almost 2 hours a day in the cafeteria watching others eat...

Does your son eat school lunch or does he pack? Packing would definitely be easier for him to manage the peer pressure of everyone eating chicken nuggets, pizza, spaghetti...the typical cafe. fare.

Once he loses his cravings for the other foods it will also get a lot easier.

Good luck!

Jackie