My son has it too...

[ccwright]

Hi everyone,

I am just needing a place to express my sadness. I had my 3 children tested for cd since I heard there was a 10% chance they could have it too. (I was diagnosed in early May). My 2 little ones came back negative but I just found out my 17 year old son tested positive. I am having such trouble grasping the ramifications of this for him. It was one thing for me, a grown woman, to have to deal with such a life changing illness, but for my son it will be enormous. He has never had any symptoms and he is a healthy, strong young man. It was much easier for me because I was so desperately sick I was relieved to know what the cause was. I can't even fathom what it will be like for him as a senior in high school and then in college. I mean, what in the world will he eat for lunch in school? Everything is sandwiches and fried food. A 17 year old boy can't be expected to pack a bag lunch. He would never go for that. Has anyone gone through this yourself or had a child this age have to deal with all this? I could really use some words of encouragement.

Thanks friends. I'm so grateful to have a place to express my feelings to people who understand and care.
Chris
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Chris

[aklap]

Chris,

I am so sorry to hear that. I agree, I think it's so much easier for us adults to deal with this (I'm not saying that this is an easy thing to deal with by any means) than a child. Particulary a 17 year old...with NO SYMPTOMS!!! My heart goes out to you!!

Please, still keep an eye on the other 2. I think the numbers are 1 in 22 of having it if you have a 1st degred relative with CD. Going GF for the entire house hold would be a good idea.

Chris...believe it or not, this really is a good thing that you/he found out now...before much or any damage is done. Try to keep this in mind while going thru all this.

Was it a blood test or did he get scoped? If it's blood test, will they want to scope him?

I don't have kids - so I can't be of that much help to you.

Is it possible for him to come home for lunch? When I was in HS, I lived close enogh I could do that. I guess I would start with the principal and tell him of his dietary needs - then go from there. They will probably want you to talk to the food service people.

I have a friend on another board. She has a 18 y/o daughter that should be GF (and chooses not to) and a 10 y/o daughter that IS GF. Let me see if she'd come over here and give you some tips.

Take care! Hang in there Chris...everything will be alright!!
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Jeanninea]

Hi Chris,
Oh Chris - it is so hard at first - wrapping your mind around this Gluten Free stuff. But better now than waiting til the sugar diabetes or cancer kicks in or other auto immune diseases.

re your younger kids - I would beg you to read all the stuff on celiac and to have a gluten free kitchen & to feed your younger kids gluten free. They will adjust very well - I have 3 grandkids, 9, 7 & 5 that have been gluten free since March - I think - although their dad is not supportive & have let them cheat a couple of times. Once one gets over the addiction to wheat it is really not that much of a big deal.
Please forget their negative diagnosis - the doctors do not catch it most of the time - I would consider doing the gene tests & others for them thru Entero Labs. We are going that route at the moment.

Re the 17 year old - well just like we were telling our children yesterday, "make your own path", and avoid the herd mentality. The only thing I can say is to make sure he is well informed. Do you have the support of his dad or your doctor to talk to him? - or contact your local support group - there are a lot of teens in our group. He might even know someone that has Celiac & hides it from their friends! What would he do about his diet if he had diabetes or cancer? There is a plan from the disabilities act or something like that where the schools have to provide a meal that he can eat - I think it is called a 504 plan/form. You have to file it with your school.

remember Carol Channing even takes her food to the white house ... so if it is good enough for her - it is good enough for me. There are quite a few "known" people that have Celiac but do not make public statements about it - as they should be.

But in the end, after you have presented your case & made the contacts for him & introductions etc, there is not much you can do. He is 17 & has to make his own choices. He cannot go into the military with Celiac - they will not take him - so that might be a good thing - since he has a diagnosis. We might see a lot of young men in this country trying to get a celiac diagnosis!

So once you have done all you can do - you have to let it go & just be an example & serve gluten free meals at home. At 17 he is pretty much grown & I am sure this issue is not going to be the only one that you will be having to let go of as he makes his life decisions for himself. His symptoms are probably going to get worse soon - as he will be leaving that puberty period that seems to give some relief to celiacs. Some women even feel better when they are pregnant.

[Guest]

Hi Chris,

Al was mentioning your predicament to me.

I'm feeling sort of sad for you, too! I do think the teen years are just about the worst time in one's life to have to adjust to this. But, if your son has celiac disease, he doesn't have much choice.

I think it will be important that he does a bit of reading about celiac disease, so that he understands all that can go wrong if he doesn't embrace this new diet, in strict compliance. He needs to know why it is so important. Dangerous Grains by Hoggan/Braly might be a good book for him.

Getting him through his senior year may be the most difficult period. It will be an adjustment period, plus the food offerings might be slim within the school lunch. I'd plan on big breakfasts and big dinners at home...and a light lunch at school...maybe gluten free snack bars, fruit...things that are easy to grab and go (or carry in a back pack). As you probably have already realized, eating at home is not the problematic part. If he is diagnosed celiac disease, the school HAS TO provide him with appropriate food, but I think it would be easier to just get through the year bringing in his own, or scoping out the few limited choices there might be.

But, it wouldn't hurt to call the school district to find out how many hoops you'd have to jump through to accomplish the school to provide appropriate food. Up to you. I'm one who usually takes the path of least resistence even if it requires a little more effort on my part. Your son might also feel better about approaching this with as little fanfare as possible, but ??? My daughter is just ten, and we pack a lunch every day.

I believe most colleges are quite accomodating about dietary restrictions..and especially if your son has a clear diagnosis you should have no problems gaining cooperation in that regard. Campus offerings are a bit more expansive than in HS, so I'm sure he'll be able to find gf food there. My son attends the U of Minnesota, and there was a big article in the school newspaper two years ago about a group of celiac students, and how accomodating the school was. Missing out on pizza when the gang goes out is a whole 'nother thing. My nine year old has to deal with that...at birthday parties..no pizza, cake, and no ice cream for her. They adjust.

I think somewhere there is a celiac forum specifically for teens, but I'll have to work on finding it. He is going to have to take charge of this..that is one big piece of advice I can give. You can't control what a teenager eats. It will be very important he understands all that can happen if he doesn't follow the diet carefully.

Its going to be OK. Even though this is sad news, and its probably the most difficult point in ones life to make this sort of change~ its times like these that you have to count your blessings that its not something worse. This is 100% treatable with everything pointing to a long healthy life..albiet with this food restriction. If you have suffered with symptoms, your son should be happy to know that he won't have to go through that..because now you know what the problem is...and its a good thing to have caught it earlier in him.

If you want to stop over at the Gluten/celiac forum at www.braintalk.org we can probably brainstorm some teen acceptable food choices. You want to focus your attention on building a list of what he CAN have, not what he CAN'T have. Thankfully, a lot of junk foods (chips/candy) are gluten free, and that should make any teen happy . He can ease into a healthier diet a little later~

I agree it doesn't help matters if he is asymptomatic, although he may find he feels better gluten free! (more energy, etc) How is he reacting to the news so far? Does he eat fruits? Vegetables? Is he used to eating breakfast? What does he eat for lunch now?


Cara

[Fawn in CA]

Chris, I feel as you do, that it's easier for adults to adjust than for kids. However, keep in mind that teens adhere to the gf diet better than adults! I heard this at the Celiac Disease Foundation conference in Los Angeles last month.
One of my daughters was diagnosed 1 1/2 years ago, midway through her freshman year in college. In a dorm across the country (in GA). 19 yrs old then, and seriously ill. She just finished her sophomore yr and a summer semester abroad.
My other daughter was diagnosed a few months later. Just graduated from college, new apartment, new city, new job/career. Also across the country (NY). 21 yrs old then, not feeling great, but not seriously ill. She just finished her first year in the full time workforce, and is truly a picture of health - feels and looks BETTER THAN EVER.
This diet pays dividends - your son may feel better gf, even if you and he don't realize it now. The long term benefits are probably greater than the short term, for him especially - he may never have to feel awful!
Although my girls do occasionally vent, they have taken this diet in stride and done very well.
I'll see what I can do to get them to this forum. Fortunately, kids just live the diet, an aren't as apt to go to the celiac internet forums as adults!
Since the girls were diagnosed, we have found out about diagnosed-but-never-discussed CD in my husband's family, my sister has been diagnosed, and our entire household has gone gf. We don't even have to discuss it too much anymore, except to pass along cooking tips, traveling tips, new discoveries, etc.
IT DOES GET EASIER, AND WHEN YOU FEEL BETTER, IT'S ACTUALLY A RELIEF TO HAVE BEEN DIAGNOSED!!!
My daughers' friends and co-workers have been very good about their diets. Actually, better than some of our family (the same people who refuse to be tested). You'd be surprised how open minded young adults can be. Some people have put out a lot of effort to educate themselves and accomodate my daughters, or at least allow them to take care of themselves.
Maybe your son will unexpectedly feel better! He might want to arm himself with fruit, dried fruit, nuts, gf jerky (is that cool enough for a guy?), meal replacement bars, and of course, some candy and gum. Zip lock snack bags that can be carried discreetly for snacks, and, yes, a brown paper sack for lunch, until/unless he can figure out a gf lunch he can buy. He probably shouldn't tote around rice cakes (very messy and not too satisfying by themselves) or anything strange, of course.
Best of health to you and your family - hope you are soon enjoying the gf diet!

[aklap]

Hi Chris,

Here's the celiac teen's board Cara talked about: http://www.celiacteens.com/

It's run by another friend of ours Reyanna
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Fawn in CA]

Chris - I'd recommend buying Wheat Free, Worry Free, by Danna Korn. You will probably get the most out of it if you read it about 3 times, spaced out over about 6 weeks.
Also, we did not have very good luck with the college dining facilities. Even though the manager claimed his dad was Celiac. Always made my daughter feel like a lot of trouble. Food was never ready to serve to her, so she couldn't really eat with her friends. After contamination 3 times too many (and being sick, including brain fog, for 3 - 4 days each time), she only ate fresh fruit and beverages from the dining hall. She was very sensitive, as is our entire family now. My husband and daughters are also lactose intolerant and casein free (a dairy protein); college daughter is also allergic to shellfish; career daughter and husband are also sensitive to red dye #40 and yellow dye #5).
Leave Wheat Free, Worry Free out - your son will probably read it when you aren't looking!

[Fawn in CA]

Chris, when your son goes to college (assuming he's away from home), he might want to get a refrigerator-freezer-microwave combo for his SINGLE dorm room, to supplement the food he can safely eat from the dining hall. GF main dishes were the shortfall at my daughter's school. She also had to get permission to have a car on campus (to drive to a grocery store).
She stocked her unit with Amy's frozen entrees/meals, Delimex froz taquitos, bag salads, fresh fruit, fresh veggies, and of course - soft drinks!
Also, had a pot to heat water for Thai Kitchen stuff and quinoa hot cereal. She never has liked the bread products, so we didn't get her a toaster or toaster oven. Likes microwave popcorn. READ ALL LABELS.

He might even be able to take an Amy's frozen entree to the dining hall microwave, take a small can of olives, and build a complete meal stuff from the dining hall: a salad, corn on the cob, carrot sticks, and beverages - that way he can eat with his friends without waiting for and/or risking a gf meal at the hands of workers who may not care or understand. His friends will get used to his eating habits pretty quickly. If he can have dairy, he can have gf frozen pizza on hand.

[Guest]

Thank you, thank you. I'm sitting here with tears in my eyes because I'm so thankful for you all. Your words of encouragement and advice are going to be very useful. As far as how he took the news, it is now starting to hit him. He is quiet and reserved, so sometimes it's hard to know what's going on in his head. He is a resilient kid, always has been, so I do know he will take this in his stride. My husband has been extremely supportive of me since I was diagnosed, so I'm sure he will be the same for our son. Al, I think it was you who asked how he was diagnosed. It was with the celiac panel. They told me to take him to the Childrens Hospital of Pa.- there is a great GI division there. I called today and their first available appointment isn't until mid-September. I would imagine they will want to do an endoscopy, right? If it shows up in the blood work is it a definate? Could there still be a possibility that he doesn't have it? I just assumed that if the blood work came back positive then it was a sure thing.

He is a tremendous athlete, so it is already normal for him to eat fruits and vegetables and "good" stuff. My biggest concern right now is for him socially. He does have a good group of friends and it seems to me that they are supportive of eachother. I hope that proves to be true. I will definately get some books. We have already done quite a bit of research since my diagnosis, but of course there is tons and tons to learn. I do think he will take this all seriously because he saw how sick I was. He and I are very close, and I hope this will only bring us closer. I will definately contact the school and see what they say. He goes to a very large high school so there have to be other students with celiac. I will worry about college when the time comes. One day at a time. Thank goodness I can come here and know there are caring people who will listen and encourage.

Take care,
Chris

[ccwright]

Sorry, that was me. I forgot to log-in.
Chris
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Chris

[happy2b]

I understand your feelings.

I have been a GF Celiac for 2 years. My doctor recommended I have my 3 kids tested & my son .. age 15... a big, healthy boy... tested positive this past Spring.

It has been tough at times.. but he is adjusting. He does take his lunch to school. He plays basketball and baseball & the hardest thing has been getting enough GF food for him during the day. He is hungry all the time. His friends all know that he is trying to be GF & they give him a hard time about it ... but they keep it light.

For us .. its like anything.. a work in progress.

H2b
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Happy2b

[Padams]

Hi Chris,
I'm a 19 year old guy who was just diagnosed. I am going to college all year round and packing your own lunch is key. Like you said, everything here is fried or sandwiches. The last year of High School, I was really sick. I was exempt from all finals and tests the last quarter. That is when I really lost most of my weight, roughly 60lbs. in two-three months. I hadn't a clue what was going on, except the fact that I was really feeling like a mess. My stomach always cramped, I always went to the bathroom. I remember this happening since 7th grade. I always felt like an idiot, having to run to the bathroom every 15 minutes. Kids are not the nicest, but living in a small town in Massachusetts helped. The last semester of college, before I was diagnosed -- I missed a lot of class. In fact, I am suffering because of it. I am a straight A student -- but my stomach really kicked into full gear recently, and I am failing all of my classes. I have talked with my guidance counselor and Dean -- everything should be fine. Of course, I have to retake the classes and $$ for them .. but my mom and dad are very understanding. So, for a bit of advice for your son .. no matter how hard it may seem, bring a bagged lunch. It helps me in college, and it will help him. Starting earlier is best.

I hope you and he are doing well! Please keep me updated!

Thanks,
Patrick
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Patrick
06/14/05
I love Danna Korn

[ccwright]

Patrick,

Boy, it sounds like you have really had a tough time of it. Thank goodness you can finally get things under control and get your life back. I will be sure to stress to him that bringing his own lunch is key. I told him I was going to contact the school and see about them providing him with something special and he said that he didn't want to be singled out. I understand that. His only other option is bringing stuff he can eat. We'll work it out. Thanks again for your wisdom.

Take care,
Chris
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Chris

[reyanna]

Hi! I'm Reyanna. I have a website (which my friends Al and Cara mentioned [thanks, guys!]): Celiac Teens (www.celiacteens.com), and you and your son are welcome to come take a look there. We've been down a while so our message board is just getting up and running again, but there are many teens involved with Celiac Teens.

I know almost exactly what you're going through with your son. I found out I had Celiac when I was 20. I was in college at the time, and I thought it would be so difficult to find food to eat. Yes, it was... at first. But my food service director was lots of help. Your son can always talk to his own at school to see if they can accommodate him. If not, he'll see it's not that big of a deal to bring a lunch to school. And there are TONS of things that he can bring. I know right now it doesn't seem like much, but that's because you're looking at the things he *can't* have instead of the things that he can. I have a list of lunch ideas at my website. Things that teens like (and are easy).

It may be a bit more difficult for him since he is symptom free (I was in high school), but you can let him know that finding out now is better because he probably would have been sick in the long run. (And nobody should have to go through the pain and suffering that most Celiacs do.)

Everything will be okay though. After awhile, it won't seem like a big deal to him. You can make pizza and chicken nuggets and burritos... all gluten-free. I have tons of ideas for him too (and lots of recipes that are easy). Please tell him to stop by Celiac Teens. We're there for him (and you)... and nearly everyone in the Celiac community (and all online) are very helpful and supportive. We're here for you!

Also... you mentioned that you're sad. You should be happy! Happy that you know now, and he doesn't have to worry about osteoporosis, lymphoma, ulcers and neurological problems that most unknowing-Celiacs face. The day I found out I had Celiac was one of the happiest days of my life because I finally knew what was making me sick. And now... I feel so good.
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Stay strong.
*reyanna*

"You're braver than you believe, stronger than you seem, and smarter than you think." ~ Winnie the Pooh and the Grand Adventure

[Al]

Thanks Reyanna...you're a sweetheart!!!!

Al