Son Age 15...just Diagnosed W/celiacs

[Joyzzz]

I'd love to get some ideas on how to get my son out of denial and realize that being gluten is

NOT the end of the world! He has yet to take gluten out of his diet.

We had a hard time getting my son diagnosed. After 6 months and 3 Dr. we are sure he has Celiacs.

He is VERY under weight 86lb and small 5'1". His older brother and sister were 5" taller at the same age.

The family is very supportive, we have gluten free foods here, some special, lots just healthy gluten free.

So, I really don't view that as the big problem.

Thanks for any ideas!

[cyberprof]

I'd love to get some ideas on how to get my son out of denial and realize that being gluten is

NOT the end of the world! He has yet to take gluten out of his diet.

We had a hard time getting my son diagnosed. After 6 months and 3 Dr. we are sure he has Celiacs.

He is VERY under weight 86lb and small 5'1". His older brother and sister were 5" taller at the same age.

The family is very supportive, we have gluten free foods here, some special, lots just healthy gluten free.

So, I really don't view that as the big problem.

Thanks for any ideas!

Hi Joy, my son turned 15 yesterday. He went gluten free after researching it and finding out that celiac may be the cause of his lack of growth, both height and maturity. He really fell off the growth curve and doesn't want to be shorter than his sister (who is 5'9" at age 17) for the rest of his life. His dad is 6'2". Does your son realize that going gluten free may restore his growth after 3-9 months?

Being a teenager w/celiac is incredibly tough, much more so than for me as an adult. I had my pizza in college -no beer cause it made me sick. I was probably celiac then but didn't know it. My son and yours will never have that and will have to have special food at the dorm and on trips. I hope your son sees the writing on the wall and gets healthy. Feel free to PM me if you want...we have a lot in common.

~Laura

[OBXMom]

I'd love to get some ideas on how to get my son out of denial and realize that being gluten is

NOT the end of the world! He has yet to take gluten out of his diet.

We had a hard time getting my son diagnosed. After 6 months and 3 Dr. we are sure he has Celiacs.

He is VERY under weight 86lb and small 5'1". His older brother and sister were 5" taller at the same age.

The family is very supportive, we have gluten free foods here, some special, lots just healthy gluten free.

So, I really don't view that as the big problem.

Thanks for any ideas!

My daughter had no problem eating gluten free when she was with the family in support of her little brother with celiac disease, but this week we learned she, too, has gluten & casein sensitivity through enterolab, and that is a whole different ball game with her. She was angry, and said, it is one thing to choose not to eat it, but now that I find out I can't eat it, I crave it all the time. I had a copy of Gluten Free for Dummies around, and put it on her nightstand. It is really easy to pick up and read a bit at a time, and it is helping. She has quoted it to me a couple of times already.

I think a teenager needs to hear things from someone besides Mom or Dad. I admit that at 15 I would not have taken a parent's word for it. Maybe a serious talk with a doctor, a nutritionist or a good book will help. Good luck!

[kbtoyssni]

My daughter had no problem eating gluten free when she was with the family in support of her little brother with celiac disease, but this week we learned she, too, has gluten & casein sensitivity through enterolab, and that is a whole different ball game with her. She was angry, and said, it is one thing to choose not to eat it, but now that I find out I can't eat it, I crave it all the time. I had a copy of Gluten Free for Dummies around, and put it on her nightstand. It is really easy to pick up and read a bit at a time, and it is helping. She has quoted it to me a couple of times already.

Maybe you can tell her that she still does have a choice. It's just the consequences are different now.

Could you take your son to a support group? Maybe being around other teenage celiacs would be helpful. Or let him join this board and post in the teenage forum.

[Nancym]

If it were me, I'd take the whole family gluten free. I think families need to be cohesive when it comes to eating. If one member is on a diet, the whole family should not be eating what the dieter can't have, IMHO. Perhaps you're already doing this, your posting didn't really say. But this would be my own philosophy and it was the way my own Mother ran the family. She was the Food Tzarina and she set the laws when it came to food and nutrition. I suppose I resented it at the time, but I love her for it now.

[Joyzzz]

Thanks for all your ideas and support.

The family is VERY supportive and does not have any problem with the gluten free dinners I have been making. The only real meal we all try to sit down and eat together. My son, 15 is the youngest, DD is 18 and Oldest DS is 20. They are in College and have jobs..........so I really can't expect them to eat gluten free.

I think I will pick up the Gluten Free for Dummies book. I saw it and though it may be good...even if I was the only one who really read it!

Laura I will be in contact with you...........I'd love someone is common with me!!!

[NoGluGirl]

Dear Joy,

I must commend you on your efforts. I wish my family was as understanding. Due to being sick, I am stuck living at home at 25 years old. Despite being paranoid careful, I still manage to be glutened periodically due to my parents' refusal to go gluten-free. Since this is a genetic disease, I worry they too, may have Celiac. The trouble here is, you can lead a horse to gluten-free hay, but you cannot force it to eat it.

My reaction is so violent, a microscopic amount makes me terribly sick. This is why I am not tempted, no matter how desperate I am for something. Even when someone does not have a violent reaction, they still damage their intestines every time they consume any amount of gluten. Your son is fortunate to be diagnosed so young.

Perhaps I could have been tall had I known at his age about Celiac. Although my mother is only 4'11 1/2, my father is 6'2. It would seem I had half a chance! I am only 5'1 1/4. Ask you son if he plans on learning how to levitate, because that is the only way he will be able to reach anything if he keeps eating gluten!

How fond is he of his gallbladder? I am just wondering. Mine went bad at 20. That should not occur. Gluten intolerance and Celiac often have a detrimental affect on this particular organ. Incidentally, the PCP said the tests they ran showed nothing, so it could not be it. I informed him, according to my research, that HIDA scans, abdominal ultrasounds, and CT scans had an accuracy rate of only 33 percent at best.

I then got the referral to the surgeon. The surgeon was very thorough, and decided with the symptoms, I was a candidate for surgery. I had a gallstone show up in the abdominal CT that a previous PCP missed due to being obsessed with mental illness. (Okay, act surprised now and do not forget to bring your jaw back up.) At my 10-day post-op check-up, it was revealed that my gallbladder was inflamed, very irritated, and could have ruptured. The moral of the story is: Go with your intuition and listen to your body.

Another important thing to point out to your son is that a rare form of intestinal cancer results from untreated Celiac. Those who had it all of their lives could not see it coming. None of them knew they had this rare disease. Damage may be irreversible at this time. Your son has been given a second chance at life, and I would recommend that he take it. If I had known ten years ago that I had this illness, I would have been able to go to prom, and graduate with my class. I would have not missed several weddings.

As a popular sportswear campaign said in the 1990s, "Life is not a spectator sport." Unfortunately, it becomes one for many who have Celiac who remain undiagnosed. I missed out on so much. Had I known this disease was the cause, so many things could have been different. The diagnosis can be daunting, having to worry about everything from your toothpaste to your hairspray. Food is just some of the concern.

Buying new cookware, utensils, and other items is overwhelming. However, it can be done with more ease than you expect. I try to make the transition as simple as possible. That is why I provide a list for new members. It is sort of a welcome present. Life is already complicated, so anything that makes it simpler is great.

Your son is also worried most likely that he will never feel normal. He likely fears that his diagnosis is a death sentence for his tastebuds. I was surprised to discover the wide variety of foods available on the market we are allowed. It is recommended the first two months to primarily eat fresh fruit, veggies, rice, and meats. Dairy is often not recommended, since casein (a protein in dairy) tends to cause issues with Celiacs. Lactose is sometimes the trouble, which you can test by getting some lactose-free ice cream. If you react to it anyway, then the casein is more likely the culprit.

I have a list that should really help. This is overwhelming. I went through this with myself in August of 2006. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margarine*

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

[Darn210]

I think a teenager needs to hear things from someone besides Mom or Dad. I admit that at 15 I would not have taken a parent's word for it. Maybe a serious talk with a doctor, a nutritionist or a good book will help. Good luck!

I think OBXMom is right. This school year is wrapping up so it may be too late, but the next research project/paper he needs to write for school, suggest he write about Celiac disease. Let him do all the research . . . let him interview a doctor . . . let him read about the long term affects of noncompliance . . . let him connect all the dots and come to the realization. Be a meddling mom and ask one of his teachers to ask him to do it . . . practice you 'innocent' face and look like you had nothing to do with it.

Did he have any symptoms besides the small stature?

[Joyzzz]

WOW....noglugirl your comments and health issues had a big impact on me!! Very powerful! I hope to get this across to my son! No sure how...yet! Thanks for the list. I will contact you for the chocolate chip cookie recipe.

Janet...his symptoms are stomach aches, low weight, not going into puberty at all.

He had a colon biopsy which showed some signs of villi distress.

The blood test show his is very low in protein. Tired all the time, bags under the eyes, but being low weight

contributes to this..

I fear he has an eating disorder. Does your stomach hurt and you don't eat or you don't eat and your stomach hurts?

Doing a paper is a great idea...but I need to see how is goes!

Joy

[nikky]

Show your son this site, im 15 myself so i know his reservations, its difficult when you are reliant on gluten filled foods and at our age we dont have our brains wired up correctly yet and with all the changes to our bodies a diet change is the last thing we want although many of us need it.

point him towards the teenage section here and give him this adress-www.celiacteens.com- it has a messageboard and tons of info and advic, it also outlines the consequences of long term cheating encourage him to make a few posts let him say whatever he wants, hes more likely to talk to people his own age who know what hes going through than to people like doctors and even you. (some teens just dont like talking about things like this with people they know).

If all else fails use shock tactics, do some research and show it to him tell him about the risk of lymphoma if he carries on with gluten, but make sure he knows that if he goes glutenfree the risk is reduced down to that of everyone else-coeliac or no coeliac.

If you/he would like to you/he can message me for support/advice.

[Joyzzz]

Thank You Nikky..........I will keep your advice in mind!

I will see if he will contact you or at least check out the Celiacs for teens!

Joy

[ryebaby0]

My son is nearly 15, diagnosed at 9. I am puzzled by your original statement that he "hasn't taken gluten out of his diet yet". This isn't something to negotiate. It's like wearing a seatbelt, or not playing with knives. IMHO, if he isn't going to cooperate, you've no real choice but to make your house gluten-free so he will have a "safe" zone (I have two teenagers, and know what goes on at school!)

That being said -- he is in denial, and then will come anger, shock, and grief. It is very much a loss, so be patient but firm; understanding but not pitying. Let him have his own account here, have him join the Facebook celiac group, etc.... my son has four friends at school with celiac, and many more with food allergies. It's just not that rare.

Give him time. Don't pity him, whatever you do. He is much luckier than children dying of rare diseases, disabled by accidents, etc. He has a bright happy future, but can't see that right now while he is grieving, so see it for him. I don't think reading a book will help him. I don't think education about the perils of not being gluten-free will help (teens are, after all, indestructible in their own minds, it's one of their charms!). Say "this is the food we have, eat it or don't but there's no gluten here for your safety and health". He is going to feel so much better in 6 months, he won't want to go back! Trust us!

My son grew 7 inches the first year he was gluten-free, just so you know......

joanna

[Joyzzz]

Joanna..........you are right.....I do need the tough love. Joy

[Susanna]

Boy, that's a tough one. Here are my thoughts:

1. Use this as a hook: tell him he will grow once he stops inflaming his gut with gluten--when the gluten assault stops and your gut settles down, it will absorb the nutrients and YOU WILL GROW. There have been amazing incidences of celiac kids growing several inches after getting off gluten--tell him chicks dig grown up GUYS, not little boys.

2. One huge barrier to teens being compliant with the diet is they feel weird around their friends because they have to eat differently. So, make sure he has normal food to pack in his lunch. Just normal food that happens to be gluten-free: trail mix, fruit, string cheese, fruit, beef jerkey-but read labels of course. Teens love junk food LET HIM EAT IT--Cheetos, Fritos, tortilla chips are all gluten-free. So are Snicker Bars, Baby Ruth Bars, and many others. If he doesn't feel weird around his friends, he may be more compliant. Granted, these are not great nutrition, but he needs the calories anyway, and if it increases his compliance, I think it's worth it. You provide the great nutrition at home at dinner. I would say you should focus on anything he wants that is gluten-free for lunch, regardless of nutritional value--make this compromise just to get him through that lunch meal at school that is so high risk for cheating.

3. On the control issue. You can only control him so much. Yes, a clear message should be sent that your expectation is that he will follow the prescribed diet, because he respects his body and is a good steward of it--just as you expect him to wear a bike helmet and not do drugs. Set the good example by going gluten free at home. You provide the right diet for him. Yes I mean the whole family. At my house, for the first 2 years after my son and I got diagnosed, I just flat didn't bring gluten groceries into the house. I figured we had it tougher than the non-celiacs, and they could get their gluten fix out of the house, but at home all I provided was gluten-free. Interestingly, my husband (a non-celiac) now complains if we're out of the gluten-free bread and all there is is the gluten bread. He also prefers gluten-free pizza now. HOW CAN YOU EXPECT HIM TO COMPLY WHILE HIS FAMILY EATS GLUTEN GOODIES IN FRONT OF HIM? He's already showing you this is hard for him--don't make it any harder by having gluten in the house--besides--that temptation is a set up for failure.

When your son is not home, guess what? You can't control him. If he's going to cheat, he's going to cheat. Let go of your illusion that you're in control of that. All you can do is talk to him, ask him to comply, explain why (how he will benefit from it). Just make sure you point out when he's feeling crappy--is it because maybe he didn't eat right? This spoke volumes to my son--my pointing out the stomach ache always came after he ate bread or pizza. Also, point it out when he does eat right and feels better. Make sure he knows what normal foods are OK. Help him make a master list of the gluten-free foods at all the fast food chains--at burger places, my son and I order fries, get a bun-less burger, or a milkshake--show him he can still go out w/ friends and feel normal, he just has to learn what's OK and what's not. Even at Subway he can get a drink and chips. This isn't important to celiac adults--the whole peer thing--but it's HUGE to kids, especially teens.

Good luck to him and you--I hope he does well.

Susanna

[NoGluGirl]

Dear Joy,

I know your son will love those cookies! The ingredients are also easy to find. That is important as well. I sent you the recipe, so it should be in your message box! Gluten-free food can be great! Bland is not in my vocabulary.

If need be, I will talk to your son myself! Just PM me to set up a time. I want him to know I do not want anyone going through the misery I have. Anyone I can save from becoming a medical horror story I will! It is understandable your son wants to be normal, but adults with Celiac face the same dilemma.

Celiac can make you feel like a freak, but it does not have to. An excellent example is my best friend's wedding. She just got married the other weekend. I was worried about the reception, but she had a special plate ordered so I could eat with everyone else! Even better, the treat bags were Hershey Kisses and M&Ms, which are gluten-free!

Taste really is everything. My father recently discovered he is diabetic, so now both of us are on restricted diets! Our budget is very tight, so I rarely buy special foods. If money is not an object for you as much, feel free to check out the awesome selection of gluten-free pretzals and things at the Gluten-Free Mall. I occasionally get to treat myself, but normally must make things from scratch due to a strained budget.

One thing I really love to indulge in once in a while is a taco. All you have to do is get Ortega Taco Shells, their taco seasoning, and prepare the meat. Get some Daisy Sour Cream (Regular, Fat-Free, and Light are safe!), Kraft Shredded Cheese, some shredded lettuce and chop some tomatoes, and you are in business! Yesterday was Cinco de Mayo, so this is very appropriate. In case your son likes donuts, Kinnickinnick makes some chocolate and vanilla glazed ones. My brother loves them, and he thought he would never be able to give up his pastries!

Incidentally, Susanna is right. Once your son begins feeling better, he will realize what he has been missing out on. After you go gluten-free, your reactions often get stronger than before you stopped. This is due to the fact that you were in the constant state of being poisoned, so your body did not react so strongly. Now that you have cleared the poison out of your system, upon introducing back into your body, it makes you very ill. He will start avoiding gluten like the plague after that point!

Sincerely,

NoGluGirl

[celiac mom]

Boy does your situation sound just like mine four years ago. As a freshman in high school, my son was diagnosed a week after school started- same as your son, skinny, small (under 5 feet) and not yet in puberty. Just know that he will grow when he is not eating the gluten- mine gained 13 pounds a year after being gluten-free. Now he is 5 feet 10 inches, still skinny, but well into puberty. He will come around after feeling good without gluten. My son had no symptoms either except no growth and an occasional stomach ache but some wierd symptoms like eczema, and lots of mouth sores. He felt so much better when he started to gain weight. That is a real motivator, but it's hard to be a teen not eating pizza. He eats before he goes out and then can eat alot of snacks, chips and candy with his friends. He orders burgers when they eat pizza. It's hard I know as a mom, but hang in there!

[Joyzzz]

Celiac mom............I feel hope in my future! How long did it take for your son to grow and hit puberty?

My son was pretty messed up with the questionable- diagnosed Celiacs...on the fence cause for his small size, under weight, and non puberty. They thought it may be crohns, a intestinal issue, or maybe a combination or the above.

My sister's best friend was the one who figured it out. She is not in any medical profession....but she has a daughter with a syndrome.

Jin....thanks for the recipes....money is tight...my husband is in the mortgage business!

I may )at some point) take you up on a conversion with my son....he really is a good kid!

I have most gluten OUT of the house! He is a picky eater so special food for him is not too uncommon!

Thanks again........I didn't know how much I needed all of your support! Joy

[cyberprof]

Boy does your situation sound just like mine four years ago. As a freshman in high school, my son was diagnosed a week after school started- same as your son, skinny, small (under 5 feet) and not yet in puberty. Just know that he will grow when he is not eating the gluten- mine gained 13 pounds a year after being gluten-free. Now he is 5 feet 10 inches, still skinny, but well into puberty. He will come around after feeling good without gluten. My son had no symptoms either except no growth and an occasional stomach ache but some wierd symptoms like eczema, and lots of mouth sores. He felt so much better when he started to gain weight. That is a real motivator, but it's hard to be a teen not eating pizza. He eats before he goes out and then can eat alot of snacks, chips and candy with his friends. He orders burgers when they eat pizza. It's hard I know as a mom, but hang in there!

Yes, thanks Celiac Mom. Your son four years ago is almost identical to my son now. And as Joy asked, how long til he started to grow and/or start puberty?

[NoGluGirl]

Dear Joy,

You are very welcome! Our budget is very tight, so we only can buy what we can afford. My gluten-free, yeast-free bread is an occasional treat. So are those gluten-free cookies like Oreos. The good thing is, Reese Cups are safe and affordable. I just got some Breyer's Lactose-Free Ice Cream, and it is so good! They have real vanilla bean in it!

If you need me to talk to your son, just say the word! I would like to spare him the misery of not having a life at all. That is how it was for me as a teenager. My health problems made it impossible for me to function, and eventually forced me out of school. Going to prom and actually enjoying anything is priceless. Time is something you just cannot get back.

Sincerely,

Jin

[Generic]

I was diagnosed with Celiac when I was 13 years old. I didn't immediately go gluten-free. I would be sometimes then I would eat a

piece of pizza. I was angry and needed time to accept it and to say goodbye to the foods I so loved. This went on for

about 2 or 3 months. I eventually realized that it made me sick and it wasn't worth it. And when I figured out that

schizophrenia and MS were some how related to Celiac and gluten it was enough to make me never be tempted to cheat.

Anymore I get too sick and would never be tempted to cheat regardless. My 16 year old daughter has finally decided on

her own to go gluten-free. Even though a year ago her biopsies came back negative. Btw I am now 33 years old. Sometimes

people just need time to accept it. You can Pm me if you have any questions.

[Joyzzz]

Thanks....I think everyone (on all topics) need time to adjust! My son is just determined....

and gluten free will be in is his future! Joy

[melmak5]

I am not sure if it is possible, but is there anyone in your area that is an adult male with celiac disease?

Maybe you could meet on at a local support group?

Having a positive roll model cannot hurt. Someone who isn't really an authority figure but can say all of the things everyone here is saying... "don't eat gluten and you will put on weight/grow," and "Just wait till all the gluten is out of your body and you FEEL better, its so worth it." Stuff like that, plus other positive reinforcements.

The thing is, he might not want to do it... my sister was diagnosed with diabetes at 15 and refused the diabetic summer camp options and other "events" to meet other diabetics. She just wanted to be normal and forget about diabetes as much as possible. (denial is ugly, but I totally went through it at 26, just with gluten)

Honestly, if it wasn't for some really amazing friends who made food with me and never once complained about the lack of gluten, or that a meal was "missing" something, I am not sure I would have been able to not cheat those first few months. Its hard to get "everyone on board" but if you can, and if gluten-free is less of a "weird" or "something special that 1 person needs" its a lot easier to accept stir fry (with wheat free tamari!) than rice spaghetti with breadcrumbless meatballs.

I hope things are improving!

[frec]

My acne cleared up when I went gluten free--if your son has skin problems that might encourage him. It cheered me up a lot!

Another point--the longer he eats gluten, the more likely he will develop other food allergies.

Good luck! I sulked for quite a while after being diagnosed, and I was an adult...