Just Need To Get This Out......

[confused]

Ok you all know I am having a hard time getting my stepson to stop eating gluten. I have tried yelling, bribing, screaming, grounding, you name it i have tried it.

He use to say the food that was out was my other 2 boys. Well they have been gone since monday and I still find stuff out and he just ignores what I am saying. Even when he eats soemthing and we know he has cause we tell him lets smell your breath and its always smells like what we think it is going to smell like. But he still denies it over and over again.

I just dont know what to do anymore, i cry myself to sleep every night cause i just dont know what to do for him anymore.

Then there is a part of me that is what if he is not really celiac, cause i have been following vydor about her son and oats. And that his only test was high was IgG, but my stepson has the celiac gene, so i dont know and he had reactions on enterolab.

But a part thinks maybe he is just IgA deficient but if he was then would he had no response on enterolab? Or am I just pulling at straws.

But the last few days he is back to being very tired, not sure if its the gluten or him getting up in the middle of the night and watching tv and eating gluten.

So here i sit not sure if i should redo the blood work and see if it has changed any in the last few months, or ifs gotten worse, or what to do.

im just so lost anymore on what to do.

paula

[celiac-mommy]

I'm not sure what you could use as a 'threat' but our ped's GI routinely screens for parents of teenagers to see if they're cheating. He has a few patients who have such minor reactions that they cheat regularly. You might want to enlist the doc (if they're good and reliable) to help you... Good luck!

[confused]

I'm not sure what you could use as a 'threat' but our ped's GI routinely screens for parents of teenagers to see if they're cheating. He has a few patients who have such minor reactions that they cheat regularly. You might want to enlist the doc (if they're good and reliable) to help you... Good luck!

Im assuming the dr screens by doing more bloodwork, or can they screen some other way. The thing is we havent been able to get into an ped gi yet, i have been corresponding with dr lewey but he has not got back to me about if i should put him back on gluten all the time to do the scope. We live in a small town so we dont have an ped Gi by us, the closest is dr lewwy that is 4 hours away.

But im sure i can get our ped dr here to rerun the full test to see if there is anyting we missed since all she did was the iga, igg and ttg.

The allergist that he goes to said he had to stay away from wheat and gluten from doing the skin allergy testing, and that hasnt even scared him to stay away.

I know being 14 is an hard age, but even when we have our talks he will admit he has eaten gluten and he promises he will stay away then he will go right back and do it again and again. He sneaks away from home to, so even making htis house gluten free is not going to stop him, expecially since he will start high school this year.

paula

[celiac-mommy]

Im assuming the dr screens by doing more bloodwork, or can they screen some other way.

Yeah, the bloodwork. 14 is sooo hard. All they want is to be able to be like their friends and they don't realize what they're doing to their bodies. Everything is about 'right now' not 20 years later. I feel for you both. Do any of the long term effects scare him at all?

[confused]

Nope i have even told him that his joints would hurt so bad that he could not play golf or any other sport, and still it goes in one ear and out the other.

Yes 14 is so hard expeically when they think they know it all. Plus when he is going threw not seeing his mom for over an yr.

paula

[buffettbride]

Ok, this is almost said tongue-in-cheek, but maybe you could do like some parents do when they bust their kids smoking. Buy a whole bunch of gluten-y foods and make him eat 'til he's about to burst. I'm not sure I could ACTUALLY condone that knowing what gluten does to Celiacs, and it sounds like your son is in that odd "honeymoon period."

I certainly feel for you and don't look forward to going through the same thing with my daughter. I'd like to think she has enough sense, but, well, you know teenagers. She's only about to turn 10 though.

Perhaps there are some underlying issues and he knows that eating gluten is your "hot" button. Maybe make a special day with you and him and go do something together. Bring up the eating thing in a non-threatening way while you're out and about and see what kind of response you get. Be sympathetic and let him know you understand how hard it is to not want to eat "normal" food. Maybe ask what would make him more agreeable to making good food choices.

[celiac-mommy]

Please don't take this the wrong way, but I know it helped me immensly when my dad upped and left-would it help for him to see a councelor or something? Maybe he just needs to get out all the poison in his head before he can freely let go of the poison in his body. I've been there, it hurts...

[confused]

Please don't take this the wrong way, but I know it helped me immensly when my dad upped and left-would it help for him to see a councelor or something? Maybe he just needs to get out all the poison in his head before he can freely let go of the poison in his body. I've been there, it hurts...

He has seen an cousnelor years to deal with the abondement issie. He just does not open up. We do feel that he needs to see his mom one last time and tell her exactly how he feels, she just wont come down cause she is an coward. She left him when he was 2, then stayed away til i came around when he was 3 cause she and I have hated each others since jr high, im 34 now, so its a long battle with her. She did come around when her mom was still alive but since she passed 4 yrs ago she has been in and out of his life, never an yr like this time tho. They havent even talked since june when she said she was coming and never did, she did call for his birthday 3 weeks ago but we werent home and he did call her back but she didnt answer and never called back.

I do agree he needs let go of the pioson, i never thought that would help him deal with gluten but that does make so much sense now.

paula

[confused]

Ok, this is almost said tongue-in-cheek, but maybe you could do like some parents do when they bust their kids smoking. Buy a whole bunch of gluten-y foods and make him eat 'til he's about to burst. I'm not sure I could ACTUALLY condone that knowing what gluten does to Celiacs, and it sounds like your son is in that odd "honeymoon period."

I certainly feel for you and don't look forward to going through the same thing with my daughter. I'd like to think she has enough sense, but, well, you know teenagers. She's only about to turn 10 though.

Perhaps there are some underlying issues and he knows that eating gluten is your "hot" button. Maybe make a special day with you and him and go do something together. Bring up the eating thing in a non-threatening way while you're out and about and see what kind of response you get. Be sympathetic and let him know you understand how hard it is to not want to eat "normal" food. Maybe ask what would make him more agreeable to making good food choices.

i have so thought about him eating so much of it make him sick, but im afraid of the damage we will do. But im almost thinking that is the only way it will make him think.

I have had many heart to hearts talk with him since im also celiac, but he will cry and promise me then he goes back to eating it. I have even asked him what can i do to make things easier and he jsut cries and you think you made progress when actually you have only made progress for that day.

paula

[buffettbride]

i have so thought about him eating so much of it make him sick, but im afraid of the damage we will do. But im almost thinking that is the only way it will make him think.

I have had many heart to hearts talk with him since im also celiac, but he will cry and promise me then he goes back to eating it. I have even asked him what can i do to make things easier and he jsut cries and you think you made progress when actually you have only made progress for that day.

paula

I suppose you could resort to taking away other priveliges when you bust him for eating gluten-foods. I think maybe he just needs to know where the line is, and when he crosses it there is punishment.

Sounds like having a teenager is kind of like having a toddler!

That is really awful about his mother. It makes me so sad because I love nothing more than being a mommy.

[celiac-mommy]

I do agree he needs let go of the pioson, i never thought that would help him deal with gluten but that does make so much sense now.

I just wonder if eating whatever he wants is his way of being in control. If he can't control what's happening with his mother, he might be using the food.... Just a thought.

[Electra375]

Dr Fasano (Univ of MD Celiac Center) said this to me -

The biopsy is what we show teens so they will understand they CAN NOT eat gluten. If they do, they will likely be Type I diabetic in their late 20s early 30s.

Type I - insulin dependent, non-reversible, limb threatening, life threatening Having known a few type Is who either could not get a handle on their levels or chose to cheat, they lost toes, go blind, and have organ failure.

Enlisting a docs help, might help, it might not. A firm dx is about the only way a doc will sit there and lay the line down on a teen.

14 is tough. He is going to do what he wants to do. Remember 14, invinsible?

You could get stomach or intestinal cancer and die, does not mean much. My dad just had 1/3 of his colon removed for cancer, likely undx Celiac.

[Fiddle-Faddle]

We have friends whose 13-year-old is the same way. I think that what is causing this is the addictiveness of gluten--remember, it acts as an opiate on affected people. Having gluten in the house is like having cocaine lying around but telling an addict that they can look at it but they can't have it.

You can either lock up the gluten or just not have ANY in the house.

Only trouble is, our friend's son convinced other kids to trade lunches with him, and even stole bread and cupcakes.

Perhaps you need to show your son some of the research that explains the addictiveness, and explain that this is exactly how drug addicts feel, and that he must get this under control before it's too late--and that you are on his side and you will help him any way you and he can think of.

[Nic]

I agree that maybe it is time for making the whole house gluten free at least until he gets a handle on this. This way you will at least be sure he is not cheating at home. If you find out he is cheating when he is out then maybe he gets grounded each time and eventually he will be tired of not going out and possibly give in to the gluten free diet.

I also agree with the possibility of it being a self destructive thing in response to his biological mother. My father left when I was 1 and was also one of those in and out parents. Maybe we saw him once a year, sometimes more, sometimes less. My sister and I were extremely self destructive people growing up and the funny thing was that if you had asked us if we cared that my father was gone, we would have said no. We had a wonderful stepfather who raised us as his own, we always felt loved and accepted, just like you are raising your stepson. But now as adults, we look back on it and it is crystal clear. No child can easily accept the abandonment of a parent, especially a mother, I would imagine. Good luck, hopefully this will pass.

Nicole

[Belinda Meeker]

Paula,

Wow u have a plate full and I commend u for ur efforts for caring so much for ur stepson he doesn't know how lucky he is to have u to care so much for his well being .

I couldn't imagine ever walking out on my boys (which I have 3) some ppl just don't realize how lucky they r to become parents cuz there r so many ppl out there would give anything to have just 1 child

As for u stopping him from eating gluten.........

Like the other ppl said he does have a full head and food is the only control he can do (believe me on this ) I was anorexic as a teen after my boyfriend broke up with me, cuz food was my only control

I know from experiance with a teen on gluten-free foods also, my son was dxd at the age of 13 so he too tried to cheat in the beginning but finally got fed up being so sick he decided himself he had had enough so he asked me wht he could do to stop all the sickness (he in now almost 18 and tried beer/wrong way to go with celiac disease)

Sorry I'am not trying to sound mean but until he is ready U can't change this for him he has to do it himself

So for now just be his best friend (and mom) and let him do wht he needs to get all this under control he will in time get tired of being sick and will stop once he realizes he isn't going to get better til he does the gluten-free foods for life !

If I were u I would take all the 'ugly gluten' from ur home just for ur sake since u r celiac's also and just say well u know guys I really am tired of being sick all the time and if u want me around to take care of u then we have to do it my way

Good Luck !

U r in my prayers

Belinda

[confused]

Thanks everyone for all your help, Im still at a lost on what to do but i was thinking about maybe doing an intervention type thing, Im addicted to that show on a&e lol. I wonder if all the people that love him would all sit him down and explain to him what he is doing to his body and wirting him letters on how we all love him and what is best for him, i wonder if that would work. I would even try to get his bio-mom down and at the same time let them have an pow-wow, even if i have to drive and pick her up or send her money for an bus ticket. I would love him to start school all fresh. High school is hard enough, more less for an kid like him.

What do you all think, do u think it would work, or only make him rebel even more.

paula

[gfpaperdoll]

egads, I think that would be totally embarrassing for a teen boy, especially a boy.

what about the other suggestions that have been given here? & I also suggest to get the gluten out of the house. why do you even have it in the house? Gads, as much as I hate gluten & would never cheat I would never have it around the house, at a low point I might feel like just killing myself slowly & eat it. If I was a teen with hormones & unresolved conflicts, no question, I would eat anything in sight that I was not allowed to.

Heck, I even keep my own things at the house that I consider cheats, gluten-free of course, but a few things that I consider unhealthy & not good for me. chips, a gluten-free brownie mix... I always keep a box of glutenfree pantry brownie mix in the house, I never eat them, but I just want to have the box here in case I do want to eat them or want to cook them for someone else.

I would throw out all the gluten stuff, & stock your pantry with corn chips & salsa, fritos, nuts of all kinds, popcorn, gluten-free candy bars ( lots of those )

I would also give my thanks that the stepson was acting out his hurt in such a normal way. I would also try to get him interested in doing his geneology, those parents are not the only ones that are related to him, there were a lot of people that came before them that were thinking about the great great grandchildren to be & would worship the ground his shadow falls on... I tell my grandchildren about all the grandmothers that came before me that are in heaven & how much they would love them... then there are all the generations to come that will look back & think fondly of that young man that grew up & did such & such... I think about my great great grandchildren to be & send them prayers & good thoughts & wonder what their life will be like in the year 2150. so broaden the childs view of "family" & really try to get him interested in geneology & interviewing old people...

[confusedks]

I think to get the closure of the mom thing, he may want to write a letter telling her EVERYTHING. Mean, nice, whatever he needs to get it out. I was in therapy and that's what the therapist had me do for my dad and it was amazing. It was such a great release. I thought this may help.

Kassandra

[Nic]

I think to get the closure of the mom thing, he may want to write a letter telling her EVERYTHING. Mean, nice, whatever he needs to get it out. I was in therapy and that's what the therapist had me do for my dad and it was amazing. It was such a great release. I thought this may help.

Kassandra

This is a great idea. Even if he never gives it to her, it will give him a chance to get in touch with his own feelings and understand them better.

Also, don't forget that teenagers think they are un-touchable. That is why they so freely try alcohol, drugs, and unprotected sex. They don't believe anything bad will happen to them. This is probably no different for him. I'm not sure how you are going to stop it besides getting rid of all gluten.

Nicole

[confused]

I think to get the closure of the mom thing, he may want to write a letter telling her EVERYTHING. Mean, nice, whatever he needs to get it out. I was in therapy and that's what the therapist had me do for my dad and it was amazing. It was such a great release. I thought this may help.

Kassandra

He has done that many many many times. He even sent her one that he wrote like an yr ago, and all she said was oh i know im a bad mom and we will talk when i see you next, and he hasnt seen her. I have him write one about once a month, and sometimes he will write them on his own and tears them up, i have seen the torn up pieces in his room.

I know for myself i feel release when i do that to my bio dad lol. But it just doesnt help my stepson much with his.

paula

[confused]

Well after thinking about all of this long and hard, we have decided to put him back on gluten, even tho he has not been completely off of it and redo the whole celiac panel, then get him in with dr lewey and do the scope. I think this is the only way he will follow the gluten free diet. So not my question is how long should he be back on gluten full time before we re-do the blood work. I have hearf 2 up to 8 weeks and i just want to make sure he will be on it long enough to get accurate results.

I just wanted to tell you all how thankful I am of all your support i have received with this issue, you will never know how much it means to me.

paula

[vanillazeis]

my dd has only been off of gluten for a month, but her dr is making her go back on for a scope and he's going to do another blood test while shes already out... something about the dr that ordered the original test didnt order the "complete celiac panel" so the test could have been inaccurate. anyway he told me that she has to be back on gluten for 4 weeks. she just turned three, and he said atleast 2 pieces of bread a day, but i think it would be more for an older child. i dont know if she only has to be on for 4 weeks because shes only been off for a short time, or if that is typical. i would definately call his dr and set it up with him first.

-breanna

ps. i think that's a wonderful idea to make him get the scope and everything. then he can see that it is still harming him even though he isnt feeling all that terrible. plus hopefully his dr will scare him into a gluten free diet! good luck!

[gfpaperdoll]

Breanna, there is a difference in a 3 year old getting a scope & a teenage boy.

Are you sure your doctor is just not wanting to "make the fees"?

Do you want your child to have a scope?

Are you going to start feeding her gluten if it is negative?

Just asking to make sure you know why you are going to put her through the scope business... to make sure it is not just because the doctor is suggesting it.

IMO, much better to go thru Enterolab.com right there in Dallas...

Now for a teen boy it might save his life if the scope is positive but if it is negative he will have his proof that he can eat all the gluten that he wants. But you know really by the time they are 14 you cannot watch them every minute & really it is a choice they have to make.

[vanillazeis]

for some reason the original celiac test panel that my allergist ordered does not look like ya'lls results that i see on here. her gi specialist said that there is still a chance that the allergist was wrong in diagnosing her with celiac. This particular gi specialist was also her dr when she was a baby, and had GERD. He never ordered any testing on her back then, so i dont really see him as someone that is trying to make money, he is wonderful to bayleigh. i really am very happy with him. I did not want her to get the scope until i listened to him. He was saying that he'll have to redo the blood test anyway, because that one was not complete, so she'll have to go back on gluten for that. and then he said that it could take two weeks for that blood test to come back. he said that even if it was negative he would want to do a biopsy to make sure its not a false negative. he suggested that we go ahead and do the scope and that he would get her blood sample while she was out. he didnt schedule it while i was there, he just told me to talk it over with my husband and call him back if i decided to do it. i wont start feeding her gluten if it comes back negative, not anytime soon anyway, but i do worry that after a few years if i dont know for sure that this is damaging her than i might have a harder time sticking to her diet, if i dont know that its really important. i just think its better to go through all of this while shes still just a baby. thanks for your comment, i really do appreciate you helping me to see this clearer, this is all very new to me!

Breanna

Breanna, there is a difference in a 3 year old getting a scope & a teenage boy.

Are you sure your doctor is just not wanting to "make the fees"?

Do you want your child to have a scope?

Are you going to start feeding her gluten if it is negative?

Just asking to make sure you know why you are going to put her through the scope business... to make sure it is not just because the doctor is suggesting it.

IMO, much better to go thru Enterolab.com right there in Dallas...

Now for a teen boy it might save his life if the scope is positive but if it is negative he will have his proof that he can eat all the gluten that he wants. But you know really by the time they are 14 you cannot watch them every minute & really it is a choice they have to make.

[confused]

I think the biopsy will be good for him to. If he sees the proof then he wont have anything to argue against, and maybe coming from a ped gi, he will listen more then he does to me. I guess it is best for me to since the only test of the panel that came back high was the IgG, but they never tested him to see if he was Iga deficient. So this time im going to make sure they run all 5 test, since we already have the gene test threw enterolab, we wont have to re-do that. I still know in my heart it will come back positive, this is best for him. His aunt is also an celiac and they think his grandma was to, so im sure he will also. I am just so afraid it will come back negative tho and he will eat gluten til he drops. I guess i will worry about that if and when that time comes.

paula