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I Suspect My Son Has Celiac

russtay1

By russtay1
in Coping with Celiac Disease

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russtay1 Rookie
russtay1
Posted

I think I am looking for moral support. I don't think I can get my 16 year old to listen at this point. So let me worry a little bit and I will be patient with him.

History - First, I have celiac and am gluten-free. I was always weak and starving... ate all the time and was obese. Gluten-free now, my brain works again and I have energy.

My son has had intestinal problems his entire life. He had rectal ulcers and then a rectal prolapse that require surgery to correct (8th grade). He then had a bout of ITP. ITP is short for a very long name but means very low blood platelet count. His was extremely low and he required transfusions for many days at a time. I think it is an autoimmune disorder. It came and went away over a period of a few months...terrifying. He still has intestinal upset but nothing too troublesome.

So, this is a teen who has seen enough of the medical community. He will not discuss getting tested for gluten intolerance. He says he is fine. But his family history, his autoimmune history and his "intestinal" history scare me. I have seen first hand the incredible impact going gluten-free has had on me... and I didn't realize this until I was in my 40's. I don't want him to always feel tired and mentally slow. I see this in him. He argues that he is fine.

I may bring this up at his annual physical (while he is still young enough for me to be in the room!). Maybe the blood test will be positive (mine wasn't). I worry his blood test will be negative and he will never try a gluten-free diet.

I know... worry, worry, worry.... this does me no good. But maybe I can convince him to try it eventually. He wants to be a powerhouse, lean body guy.. but I think he doesn't have the energy. If I can convince him to TRY gluten-free... he may feel stronger.

He eats gluten in every meal. Cereal, cereal, sandwiches, pizza, and so on and so on. Did I mention cereal? Several boxes a week! So gluten-free would be a big challenge for him.

Now that I have written all this, I hesitate to post. What good does all this worrying do? I'll post it anyway.

:rolleyes:

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confused Community Regular
confused
Posted
I think I am looking for moral support. I don't think I can get my 16 year old to listen at this point. So let me worry a little bit and I will be patient with him.

History - First, I have celiac and am gluten-free. I was always weak and starving... ate all the time and was obese. Gluten-free now, my brain works again and I have energy.

My son has had intestinal problems his entire life. He had rectal ulcers and then a rectal prolapse that require surgery to correct (8th grade). He then had a bout of ITP. ITP is short for a very long name but means very low blood platelet count. His was extremely low and he required transfusions for many days at a time. I think it is an autoimmune disorder. It came and went away over a period of a few months...terrifying. He still has intestinal upset but nothing too troublesome.

So, this is a teen who has seen enough of the medical community. He will not discuss getting tested for gluten intolerance. He says he is fine. But his family history, his autoimmune history and his "intestinal" history scare me. I have seen first hand the incredible impact going gluten-free has had on me... and I didn't realize this until I was in my 40's. I don't want him to always feel tired and mentally slow. I see this in him. He argues that he is fine.

I may bring this up at his annual physical (while he is still young enough for me to be in the room!). Maybe the blood test will be positive (mine wasn't). I worry his blood test will be negative and he will never try a gluten-free diet.

I know... worry, worry, worry.... this does me no good. But maybe I can convince him to try it eventually. He wants to be a powerhouse, lean body guy.. but I think he doesn't have the energy. If I can convince him to TRY gluten-free... he may feel stronger.

He eats gluten in every meal. Cereal, cereal, sandwiches, pizza, and so on and so on. Did I mention cereal? Several boxes a week! So gluten-free would be a big challenge for him.

Now that I have written all this, I hesitate to post. What good does all this worrying do? I'll post it anyway.

:rolleyes:

Well i so know what u are going threw. My son(step) has had problems that i feel is celiac. He is always tired, bloated, brain fog, mouth sores and he had an high IgG level. I have been fighting with him for weeks to be gluten free, and he sneaks stuff all the time. When i was watching and making sure what he was eating was gluten free, he was doing so much better, even his teachers noticed he was doing better. But with in days he was eating gluten again, and the mouth sores and crankiness all returned. I can not get him to figure out that he needs to be gluten free. I am currently gluten free, so we have lots of stuff in the house that he can eat, but he will eat the stuff that is not good for him.

I so know about the cereal, he can eat cereal all the time. I try to keep stocked on fruity pebbles and cocoa pebbles, but he will eat the other stuff when im not looking and blame it on the other kids.

My step son is 13 and it is so hard.

Maybe we can chat sometime and try to figure this out together. there isnt a night that goes by that i dont cry and wish he would take me seriously. I know he needs to stay gluten free, but to get him to know that is so hard.

paula

NoGluGirl Contributor
NoGluGirl
Posted

Dear russtay and confused,

Perhaps some reverse Psychology would do the trick. It is amazing how it works. You need to keep in mind as a teenager, their primary reaction to everything is to rebel. They really are not intending to be difficult, it is just they need to feel in control. They feel like you are trying to run their lives.

You see, when I was a teenager, that is how I felt. My parents were convinced (and still are) that I just am difficult, inappreciative, etc. Of course you guys probably never forgot to pay the water bill when you actually had the money for once when in three hours 8th grade graduation party guests were coming. Nor did you forget to pick up your 8th grader from school and leave her there all day when she was supposed to be home sick. And let's not forget when I had broncchitis being forced to leave the room so that my mother could hear her freaking show because my coughing was too loud. :angry:

You need to allow your teens to feel they have a part in this. They need to have the right to make decisions. You need to understand they want you to realize they are nearly adults. It is good you care and want to protect them, but also they just want to be understood. That is all I ever have wanted from my family. Due to this, I have come to the conclusion, I would be better off as an orphan! :lol:

Sincerely,

NoGluGirl

happygirl Collaborator
happygirl
Posted

Ask your doctor to test him (full Celiac blood panel), as well as run the gene test, to determine if he has one of the Celiac genes.

Since he is not 18, it is your job to protect him. Better now to get him tested while you have a say in all this!

Phyllis28 Apprentice
Phyllis28
Posted

I agree with HappyGirl. Have him tested for Celiac while he is still under 18.

Generic Apprentice
Generic
Posted

I can recommend a couple of things. I was a teenage celiac. The things that kept me from eating gluten was schizophrenia, MS and it made me sick as heck. I didn't want to be in a wheelchair and hearing voices in my head. And now stomach cancer is also linked to celiac.

You could have the full blood panel done, if it comes back negative, pursue an endoscopy. Or you could lie about the results and say the Dr. said he has to go gluten free, due to the results being inconclusive.

You could also go the route of threatening to attend class and go everywhere with him to make sure he doesn't eat anything with gluten. Show the side of "really controlling his life".

super-sally888 Contributor
super-sally888
Posted

Have you tried giving him information. Ask him to read it and then discuss it with him, in relation to his symptoms. If he still thinks its not relevant to him, then he is not going to stick with the diet, whatever you say. Maybe he needs to feel he is the one making this decision. If he decides not to, then at least he has read all the info and can come back to it later...

However, I do agree that you should have him tested while you can. Hopefully everything is positive and then you have some proof... but still the decision to stick to the diet or not will be up to him.

Can you have your house completely gluten free? That won't protect him outside, but will at least partially cut down the gluten he is getting.

What a toughie.

Best wishes

Sally

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NoGluGirl Contributor
NoGluGirl
Posted

Dear Generic,

Now that is a good idea! Drive him crazy! :P Then he will have to do it. I have dealt with gluten making me terribly ill all this time. Finally, my doc said I am Celiac. I had digestive problems and immunity issues from the time I was born!

However, I must say that the blood work and biopsies may do no good. If the docs do not know what they are looking for, they could tell you he is fine. That is what I think happened to me. My bloodwork and biopsies were supposedly negative. Yet, even a microscopic amount of gluten makes me violently ill. I start breaking out in a sweat, get terribly nauseated, my hands start shaking, sometimes they go numb, get diarrhea, and have to hurry up and swallow a promethazine before the dry heaves start. Which, by the way, happened to me this morning. I live in a house with two non gluten free people, so cross-contamination is a major problem.

Sincerely,

NoGluGirl

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