Need Advice

[confused]

Ok you all know how my son(step) was tested months ago and the only test that was high was the IgG, in the mean time I get tested and i come back positive for celiac. So we both go gluten free. I see a huge difference in him when he sticks to the gluten free lifestyle. He does not sick to it 100 percent. We finally will get into the gasto ped on the 11th to discuss what the IgG high levels means and what to do next. I know in my heart that is celiac cause i see how he has gained weight and the teachers say he is better in school. But he is having a hard time sticking to the diet, without an confirmation from a doctor, since he is 13, its hard to tell him that he just needs to stay away from gluten.

So would it be best i put him back on gluten til we see the dr on april 11th, i know it is only over 2 weeks away, but since he hasnt been 100 percent gluten free, would that be enough in case they want to do more test. Or should i scare him that he never will eat gluten again and forget the test.

I tried to call the ped gi yesterday but of course he never called back. I kinda hate to put him back on gluten and see him suffer all over again, but then again i know its best to get answers, for his health. Im so torn.

Be honest what would u do?

paula

[RiceGuy]

Well, from what I've read, antibodies tend to stay in the system for a while. So if there's occasional gluten in the diet every week, I'd guess the tests should be able to detect the immune response. I could be wrong, but that's my understanding of it.

Of course I don't know your son, but if I were in your place I'd just ask him if he thinks the diet is worth the way it has helped him. If he wouldn't go back to a gluten-filled diet anyway, then you don't need to have additional tests done. On the other hand, if he wants a doctor's confirmation, then he'll have to decide if he wants to eat more gluten if the doctor says it's necessary.

[Guest lorlyn]

I understand how torn you are on what to do. My 10 yr old daughter was diagnoised in Nov.-06. I have never ever heard of Celiac Disease before she was sick. I just feel so bad that she will have to go through her whole life with this on her medical records due to insurance reasons. But I am so glad to really know what was making her sick. I think for my daughter having a peice of paper to be able to give her school in case she misses more days at school from being sick or depressed that the school can not fail her due to absences or call social services(DHR). Since you have a choice on testing just think long and hard and no matter the choice you just want your son(step) to be healthy and happy.

Good luck and take care

[cajun celiac]

My advice would be to call the nurse and discuss it with her. She'll probably discuss it with the doctor. Surely this is not an uncommon question. You would hate to keep him gluten-free if they want gluten in his system and then have to wait even longer for the testing.

Also, he does not have to be Celiac for a gluten free diet to be a positive thing. The gluten-free diet in itself is a test and if without gluten you know he's better then just do your best to keep him gluten-free. You may have to come up with a creative reason since he is a teenager and knows more then you do!

[gfp]

Talk to the ped and ask that they do it.....

Yes scare him silly... but the ped telling him will IMHO carry more weight then you can alsways refer back to "the doctor said ...."

[confused]

My advice would be to call the nurse and discuss it with her. She'll probably discuss it with the doctor. Surely this is not an uncommon question. You would hate to keep him gluten-free if they want gluten in his system and then have to wait even longer for the testing.

Also, he does not have to be Celiac for a gluten free diet to be a positive thing. The gluten-free diet in itself is a test and if without gluten you know he's better then just do your best to keep him gluten-free. You may have to come up with a creative reason since he is a teenager and knows more then you do!

I will put in a call and see if i can talk to the nurse, i bet i would get an faster response threw the nurse anyway lol. I just want to make sure before we go, cause we have to drive 4 hours one way to get to the doctor, and i would hate to get there and him tell him, well we cant do any test, put him back on gluten and come back in 6-8 weeks.

Hmmm what could be a creative reason, maybe he would have more girlfriends, ill pay him 5 bucks an week to stay off gluten lol. yep i know he is so much smarter then me lol

paula

[confused]

Talk to the ped and ask that they do it.....

Yes scare him silly... but the ped telling him will IMHO carry more weight then you can alsways refer back to "the doctor said ...."

I agree the ped will be more beneficial then me, since im just the wicked stepmom(no he doesnt call me that, but im not sure if he dont think it at times)

Plus i think if it comes from a doctor then we can get a note for school and school actiivites. Like this week was CSAP's and all they served was gluten foods for the kids to snack on, if I had a note then maybe they could of served something instead of me sending him in with veggies. Plus it would help when he travels for sports, they always stop at a hamburger place, were he cant eat.

paula

[gfp]

I agree the ped will be more beneficial then me, since im just the wicked stepmom(no he doesnt call me that, but im not sure if he dont think it at times)

Plus i think if it comes from a doctor then we can get a note for school and school actiivites. Like this week was CSAP's and all they served was gluten foods for the kids to snack on, if I had a note then maybe they could of served something instead of me sending him in with veggies. Plus it would help when he travels for sports, they always stop at a hamburger place, were he cant eat.

paula

Yep and on top of that if he is travelling with school the teachers can actually intervene if he does decide to cheat...

Peer pressure is really hard for a kid even for something as common sense as not smoking yet lots do ... including smart ones because ultimately everyone wants to be accepted, even if they don't fit in.

Being on a special diet has to suck... and kids being kids some will be unkind... and others will make it a mission to get him to eat gluten one way or another just to see what happens....

That note will be VERY useful... and will make the school take it seriously.

[Suzie-GFfamily]

Ok you all know how my son(step) was tested months ago and the only test that was high was the IgG, in the mean time I get tested and i come back positive for celiac. So we both go gluten free. I see a huge difference in him when he sticks to the gluten free lifestyle. He does not sick to it 100 percent. We finally will get into the gasto ped on the 11th to discuss what the IgG high levels means and what to do next. I know in my heart that is celiac cause i see how he has gained weight and the teachers say he is better in school. But he is having a hard time sticking to the diet, without an confirmation from a doctor, since he is 13, its hard to tell him that he just needs to stay away from gluten.

So would it be best i put him back on gluten til we see the dr on april 11th, i know it is only over 2 weeks away, but since he hasnt been 100 percent gluten free, would that be enough in case they want to do more test. Or should i scare him that he never will eat gluten again and forget the test.

I tried to call the ped gi yesterday but of course he never called back. I kinda hate to put him back on gluten and see him suffer all over again, but then again i know its best to get answers, for his health. Im so torn.

Be honest what would u do?

paula

If it was my child, I'd sit down and have a talk with him. What does your son want to do? He is the one who might cheat on the diet, or not cheat. Give him the power to make the decisions about diagnosis, this might then empower him to take control of the treatment too.

Tell him you've been diagnosed with celiac disease. Celiac disease is genetic. Based on the info that you already have you are 99.999999% (or whatever percentage you want to use) sure that he has the disease too. If he is celiac this means that he can't eat gluten- no cheating allowed on this diet. It doesn't matter whether he feels sick when he eats gluten or not. If he is celiac it will harm his body. Many teenagers go through a honeymoon phase when the symptoms are masked- but the damage could still be happening on the inside. At this point in his life, his bones are still being formed. The long-term consequences of eating gluten during his teenage years could be osteoporosis (yes- even in men). Also, if he continued to eat gluten it could result in him developing another autoimmune disease, or cancer. Many of us celiacs are not nearly as lucky as he is. I found out about this condition last year- it has caused devastation within my skeleton and I never even knew about it. I tell my children how lucky they are to be diagnosed. According to Dr. Peter Green, 97% of celiacs are undiagnosed.

Discuss these issues with him. I don't think scare tactics would be a good approach. However, being honest and open with him would be good. Trust him.

Suzie

[confused]

If it was my child, I'd sit down and have a talk with him. What does your son want to do? He is the one who might cheat on the diet, or not cheat. Give him the power to make the decisions about diagnosis, this might then empower him to take control of the treatment too.

Tell him you've been diagnosed with celiac disease. Celiac disease is genetic. Based on the info that you already have you are 99.999999% (or whatever percentage you want to use) sure that he has the disease too. If he is celiac this means that he can't eat gluten- no cheating allowed on this diet. It doesn't matter whether he feels sick when he eats gluten or not. If he is celiac it will harm his body. Many teenagers go through a honeymoon phase when the symptoms are masked- but the damage could still be happening on the inside. At this point in his life, his bones are still being formed. The long-term consequences of eating gluten during his teenage years could be osteoporosis (yes- even in men). Also, if he continued to eat gluten it could result in him developing another autoimmune disease, or cancer. Many of us celiacs are not nearly as lucky as he is. I found out about this condition last year- it has caused devastation within my skeleton and I never even knew about it. I tell my children how lucky they are to be diagnosed. According to Dr. Peter Green, 97% of celiacs are undiagnosed.

Discuss these issues with him. I don't think scare tactics would be a good approach. However, being honest and open with him would be good. Trust him.

Suzie

Well he is my step-son, so i cant use the genetic factor with him. But his aunt on his bio-moms side is celiac. So i could use her as an example.

I think i will sit down with him this weekend and have a long heart to heart talk with him. I will tell him that he has a problem with gluten, not sure if its full blown celiac but he still has a problem with gluten and ask him what he wants to do. I will ask him if he feels it is important to have a full diagnoses with more test and back onj gluten, or if he feels just knowing his body does not like gluten is good enough.

I do have an meeting set up with his school next week to explain everything to them, maybe they wont have to have an official diagnosis. Plus i will have to talk to the high school soon, since he starts high school next year.

paula

[RiceGuy]

I don't think scare tactics would be a good approach. However, being honest and open with him would be good. Trust him.

Heh, the truth might be scary enough all by itself. Being open and up-front about what Celiac does may be all that is needed to bring out the best in the child.

But I do agree that having a piece of paper to wave in the school's face would be quite helpful.

[confused]

Well we talked to the nurge of the ped Gi, and she said it was up to us what we wanted to do, if we wanted to start gluten now, or wait and talk to the dr on the 11th, and he can guide us in ow to stat gluten back up, so either way he has to go back on gluten. The dr also only confirms celiac threw an biopsy.

So now i sit trying to figure out what is best for him.

He has to be back on gluten for what 6 weeks before an biopsy?

I was thinking of doing an little experiment with him tommorow after his wrestling practice, of giving him some toast and see what happens. If the pain is so bad then he might just learn to never eat gluten again

paula

[confused]

Well we are going to start him back on gluten tonight after his wrestling tournament. I am so dreading this, but we figured it was best to do all the test on him. My husbands sister has crohns, so we want to make sure we are looking at celiac and not crohns. Its best we try to get definite answers now then to make him go threw life and in a few years be so sick cause he was was not officially diagnosed. I just hope we dont up with false negatives.

paula

[taweavmo3]

Good luck with what you decide! It is hard for kids, but it can be a good thing as well. This is what has worked for me (so far anwyay, lol) in getting my 8 year old to stay gluten free. He never tested positive, but I see major behavioral changes when he eats gluten. He has also has had psoriasis on his knees and elbows since he was four years old, so I'm keeping him gluten free.

I saw a major turn around in my son's attitude towards the diet once I empowered him to make the choice for himself. Once he realized he was in control, things changed. I can't be with him all day at school, so I told him that ultimately it was really his decision. We talked about how he feels when he eats gluten, and how he usually ends up getting in trouble at school or home for being irritable and cranky. We continually talk about it, as there is temptation to cheat all the time!

I do things to make it easier for him too. At school, he has a huge bag of gluten free treats in case someone comes in with cupcakes or something. And home is a gluten free zone, we are all gluten free, and my dd (dx'd Celiac) is extremely sensitive, so this was necessary for us anyway.

Find out what gluten-free foods your son likes, so that he doesn't feel deprived. There is SO much good food out there that is kid friendly. My kids don't eat a ton of junk food, but they are kids, and they eat their fair share of candy and such so that they don't feel left out. They eat plenty of cookies, brownies, cake, ice cream, etc.....so that this "diet" doesn't seem like a diet at all.