Help For My Teenager

[kyss]

We live in Arvada Colorado...my daughter 15yrs is having really bad problems with DH, and allergies. She had been tested (blood & skin). Both came back negative and inconclusive. She has other allergies anyway and asthma. She is having physical and emotional problems because of this...her friends don't understand why she is always sick, why she can't just go out with them. She says she feels embarassed by not being able to eat like other kids. She gets very angry, and takes it out on those of us closest to her...She has been sick with swollen lymph glands off and on for over a year......Is there anyone out there who knows where I can get her help? She is already in counseling, but the physical feeling is bad right now. I would appreciate any feed back you can give.....

Thanks,

Kelly

[Eriella]

I've been there... it gets much easier. First thing is that she has to want to feel better, get over the grief of loosing a major portion of her food and come to terms that it is something that she has to do (it is rough-- no pizza, no french fries, no brownies). Tell her, or better yet let her find out, that going off gluten completely will make her feel better, and then she can learn how to do the "normal" things. Once she takes control that gluten is poison to her and it isn't crossing her lips, and feels better, her friends will be much better. The thing is that she needs to believe it, and if she is like most 15 year old girls, there is nothing you can say or do that will convince her.

I received so much grief for not going out in the past two years and always being sick. Now that my friends see me healthy and fun, they work hard to make sure that I still can go out with them. They will go to Wendys instead of McDonalds and have gluten-free snacks in their rooms. Also, teaching them about what I can eat (like I can't have pizza because it is made with wheat flour, but want to go get Thai because the noodles are made out of rice noodles or Mexican because the tortillas are made out of corn).

Once people get it, they are much better. I even had one of my friends explain to the other people at the party to make sure they washed the beer pong balls throughly between rounds so I wouldn't get sick ). I now have a normal college social life, and it is because I learned how to make it work. Your daughter can do the same.

If you have any other questions, please feel free to pm me or ask on the post.

[CarlaB]

How long has she been gluten-free? Is she seeing any improvement?

How do you know it's DH?

If you're not seeing improvement, I would look for what else might be wrong. Let us know more, and maybe we can point you in the right direction. There are many of us here who have other issues along with gluten intolerance/celiac.

[kyss]

I have been gluten-free for 4years, she has been gluten-free for almost 2years. She did see the improvement, but once again this summer has been filled will illness. Of course it's not like the school year is any better. She has times when she gets a virus and then another one and then another one.....her lymph glands swell to the size of a garbanzo bean on her neck behind her ears. In January she ended up in The Children's Hospital in Denver with asthma problems. She stayed for 3 days.

The sores she gets look just like the sores I get after a gluten accident. They itch then open and look like she has chicken pox...which for a teenager is very embarrassing...Am I totally sure they are DH...no, the skin scrap came back inconclusive as did her blood tests....I have her scheduled at TCH for allergy testing with the pulmonary doctors there for July 13th...which means after today...she can't take her antihistamine until after the testing.

As far as other issues...she has them that is for sure. She was in residental treatment for 6 weeks when she was 12 for cutting, depression, suicidal thoughts (after she was sexually assaulted by her step grandfather).

She gets better then gets worse....I can't say she isn't sneaking gluten that is always a possibility. I just wish I could fix it for her...although I know I can't. I just thougth if she knew other teenagers who have intolerance then she wouldn't feel so alone.

Thanks for your responses.....

Kelly

[confused]

We are going threw the same thing with my step son who will be 14 in a few days. We are in the process of trying to get in with dr lewey in colorado springs. He goes threw gluten rages that are pretty bad but he keeps eating gluten. He will go like an week with not eating it then bam, he eats it. Like last night we were doing fireworks and he came inside and got an cupcake and ate doritoes. then lied about it tho. The more we tell him to stay away the more he will eat it, He says he just wants to feel normal like the other kids. Its hard. I wish we lived closer and we could get our kids together to talk. I am in colorado but in the southern part of the state.

paula

[CarlaB]

If she has truly been gluten-free for two years, I would suspect that something else is going on, in addition to the possible celiac.

I used to get blisters, but it was from Lyme Disease. Any systemic illness like celiac, Lyme, heavy metal toxicity, candida, etc. can cause the symptoms you describe, including skin rashes.

Many times it's a combination of things causing the problem. I have gluten intolerance, Lyme Disease, heavy metal toxicity, and bacterial overgrowth in my intestines (too much bad stuff and not enough good). I'm being treated for all this and in only six months am significantly better.

I don't know where the right place is for you to start, but I wouldn't limit myself to only researching celiac in her case. Definately keep her gluten-free, but look for what else could be contributing.

I would imagine part of her problem is that she's not seeing improvement. It's discouraging when that happens ... I was there last year.

One place to start is to Google Dr. Klinghardt ... he's done a lot of research in toxicity causing chronic illness.

[kyss]

Thank you Carla....I will look into that and see where I can start with her.

Paula< Where in Colorado are you? I was born in Alamosa and frequently visit my parents who still live there.

Thanks for all the responses...

Kelly

[kbtoyssni]

It sounds like there may be other health issues to address here. I can imagine being different in high school would make a kid miserable, but some of it she may not be able to control. I am very grumpy and depressed when gluten and have to try very, very hard to be pleasant.

I'm not sure what kinds of activities she does with her friends, but maybe it's time to start altering them slightly. If they're going out to dinner, suggest a place that she can get a gluten-free meal at. Have her call the chef before she goes so when she gets there she can order a meal just like everyone else without asking a ton of questions. She can even slip away when the get there to talk to the chef (most people think you're going to the bathroom). If they get together to watch movies and snack, send her along with a yummy gluten-free snack. I always bring cake or chips or veggies or dip that's gluten-free with me to share so I'm eating the same stuff as everyone else. I doubt anyone would notice if she's missing the gluten items from her plate if she's still snacking on other things. You might also want to have her help you make dinners and plan menus. Pizza's a very common kid food - have her help you make some. Then she can bring some of her own pizza along when everyone else goes to the pizza place. Or send her along with something she likes more than pizza. There's nothing worse than eating boring food when your friends chow down on yummy stuff you can't have. She might also like having input on what you are feeding her.

[confused]

Thank you Carla....I will look into that and see where I can start with her.

Paula< Where in Colorado are you? I was born in Alamosa and frequently visit my parents who still live there.

Thanks for all the responses...

Kelly

Do you plan on coming and visiting anytime this summer. I think it would be great if we could met up and get the kids together. Maybe if they at least met then maybe they will hit it off then they can keep in touch threw email and stuff when they have an bad day. I know my step-son feels so isolated.

paula

[beaglemania]

I'm 15 also. I also feel embarrassed when I go out with my friends and I have to eat different food and if I get a hamburger, can't have a bun, etc. Tell you daughter to feel free to contact me. I can hopefully relate.

[kyss]

Thank you all so much for your comments. I will talk more with her if I can get her to talk. It must be exhausting to put on an act of happiness when you feel so bad. I know when I was in high school that is how I felt. She has allergy tests coming up on Friday and hopefully there will be an answer there.... I think there is alot more than gluten bothering her. She tries very hard to avoid gluten when she in home on weekends...and her friends mom buys her gluten free pretzels, pizza, etc when she stays at their house. But again...her friend came over for the weekend and they "hung out" but today she is exhausted, her asthma and rash are worse. It was good to hear her laughing with her friend yesterday....but today she just can't get out of bed. I will keep you all posted on how she is doing....and beaglemania...I will give her your invite to chat....maybe I can get her to sign up on this site to go into the teen section.

Paula,

We have to go to the San Luis Valley on July 20th to pick up my other daughter (10years) from my mom's house. But Allie won't be going with us...she is going to a concert with ther friend. Shoot me an email kyss681@comcast.net....

Thanks again everyone...

Kelly

[confusedks]

I just wanted to say that if your daughter ever wanted to email me...I can totally relate to the friends thing at school...Im 17. My email is knshore@hotmail.com and my aim screenname is knsgoestonz511 but email is best. Good luck to her!

Kassandra

I would love to talk to her.

[bwhalen]

We live in Arvada Colorado...my daughter 15yrs is having really bad problems with DH, and allergies. She had been tested (blood & skin). Both came back negative and inconclusive. She has other allergies anyway and asthma. She is having physical and emotional problems because of this...her friends don't understand why she is always sick, why she can't just go out with them. She says she feels embarassed by not being able to eat like other kids. She gets very angry, and takes it out on those of us closest to her...She has been sick with swollen lymph glands off and on for over a year......Is there anyone out there who knows where I can get her help? She is already in counseling, but the physical feeling is bad right now. I would appreciate any feed back you can give.....

Thanks,

Kelly

HI Kelly,

We are from Arvada. We live in Virginia now, moved away from there 7 years ago. We miss it so much!!!

I have a 15 year old son who has celiac. He had his lab work done at Promethius Labs in California. They are very specialized. When he was first tested 3years ago his pediatrician crossed of 3 of the 6 tests he needed saying it wasnt necessary. I went to a different Dr in Baltimore who specialized in Celiac. I have since help to educate the DR regarding Celiac. I liked him alot and wanted Eric to keep seeing him. He was amazed, saying he was told in Med school, it was a disease they would never see and it had very specific symptoms, which we now know isnt correct.

Eric started high school this year and is having a very difficult time being different than the other kids. I am not sure where to turn either. He was so sick before he went gluten free and has been sneaking lately (I was wondering why he had been sick).

I hope your daughter is doing better.

Barbara

[HAK1031]

As for the friends, have them over for a gluten-free (and ok for other allergens) dinner and, of course, dessert. This will help to take away some of the strangeness of the diet if they realize that, with a few modifications, your daughter can eat real food. I'm 16, and another girl in my group of friends has celiac, and they have a pretty good grasp on what we can and can't eat. I don't know that they understand all of the nuances of the diet, like CC, but they aren't weirded out by it. They've even eaten my baking (including some of the accidents lol). And at parties, they are really helpful- I went to friend's bday this past friday, and she had tortilla chips, popcorn, fruit and veggies, and a trail mix thing with dried fruit and nuts. She had scoops for everything so no gluteny hands got into the bowls. In fact, the only thing I couldn't have was the cake and a plate of cookies! If it wasn't a group of close friends, nobody would have even noticed that I wasn't eating like everyone else.

My friends have also gotten uesd to my being sick. They are understanding if I have to cancel plans because I'm just too tired to go out, and are really helpful when I have to miss school- in middle school one year, I missed 17 days! If she is open with them, they will likely become more comfortable around her and become helpful.