Would Love Your Input On This

[Staceyshoe]

I would love some of your advice about this situation. Super quick background: Ds has always had digestive issues (though not diarrhea). He has the gene for celiac and got a blood test but only for IGA-TTG, and he's IGA deficient. Scope was clean. Last year he reached the point where he was doubled over almost daily, not feeling good enough to play, and lost 10% of his body weight putting his BMI off the chart. We took him off gluten, and all symptoms improved. He felt FANTASTIC! After 10 wks, he failed a gluten challenge and took another 10 wks being gluten-free before diarrhea stopped. He was so sensitive to cross-contamination or anything. Stayed gluten-free for 10 months, and I noticed he wasn't getting/reacting to cross-contamination like before.

(Sorry that's long but important background.) His little brother did a wheat trial for his IgE allergy, and ds wanted to do a gluten trial. I expected him to be doubled over in pain. No problem at first. It's been about a month now. The longer he's on it, the more frequent his bellyaches and diarrhea (about every other day). Over the weekend, he had bloody diarrhea. I think it's time to go gluten-free again.

The problem? He refuses to recognize the connection. He saw it during our first gluten-free trial. Loved how great he felt. Hated how horrible he felt when back on it. He's getting gluten every day now but only having symptoms about every other day. Because of this, he says that it must not be gluten. Is there a way to help him see the light? Or do we just need to take him off it and let him see that he feels better? I think he will be permanently gluten-free from now on, so I'd like him to see that it's necessary and not just his parents being unnecessarily restrictive.

[mushroom]

His current attitude may have something to do with his age. I don't know if he was in school on the previous challenge, but it could well be that he is just wanting what all the other kids have and doesn't want to have to give them up and be different. He is old enough to reason with, to explain that it will only get worse and make him sicker but it would appear he is not very receptive at the moment. So you could just wait until he wants to give it up on his own. He has tried both ways but may not remember how bad the pain can get. And of course, all along as he continues to eat gluten he is doing himself more harm.

I think you will have to trust your mommy judgment on the best way to handle him.

[nvsmom]

I can see where it would be tough to tie it all together. I tend to get stomach aches immediately to hours later or not at all so it took me decades to piece it together.

Perhaps a demonstration would help? He's 7 right? Make a playdough model of the villi in your intestines. Show how it absorbs food, and then dramatically cut it off.

Or a demo on nerves. Explain how nerves feel the pain and that there are not many nerves in his intestines. Show him how different parts of the body have different amounts of nerves so he isn't feeling all the damage done. Perhaps do a needle prick demo. Prick various parts of the body to show how some areas have more nerves than others. Hands have a lot of nerves, arms less, and your back has very few. It might help him understand why he doesn't feel the pain.

Good luck. I'm getting my kids tested very soon and am dreading the restrictions I will probably be enforcing... I've been trying to come up with preemptive arguments before I enforce a gluten-free house, so my advice isn't grounded in experience....yet.

[StephanieL]

Who makes the food in the house. Who buys and prepares it.

You do. If you cook/bake gluten-free he isn't going to be getting it elsewhere unless he's "cheating". Soon enough he'll begin to see that it is the gluten and when he's ready he'll stop (hopefully). 7 is pretty young to get it though so it isn't surprising that he isn't connecting things. If it isn't immediate they don't reason like we do. Only other thing I can think of is a chart with times he eats gluten (like 4:00) and then marking if his belly is upset (say 7:00) maybe after a few times seeing it on a chart that A->B he'll get it. A little more concert that way.

Good luck. It's so hard with our kiddos

[Cara in Boston]

I have read (and been told by my son's doctor) that the symptoms can come and go - especially in children. She said sometimes they can seemingly disappear for months at a time - especially in teenagers. People often think they have "outgrown" their sensitivity. The symptoms may be gone, but the damage is continuing.

For us, we see symptoms days later - it is sometimes hard to figure out the exact cause of the cc because the timing is not always consistent.

Cara

[kareng]

He's 7? He doesn't run the family, the parents do. At least that's how I feel about it. I known that isnt popular right now.

Don't give him or have any gluten food around him. If he eats gluten at a friends, he doesn't go back there. He eats his home packed lunch at school. If he doesn't, you will have to go to school and eat lunch with him.

Yes, this makes more work for you. He may have to only play with kids at your house. You may have to spend more time with him,etc. Its his health! That's more important than being his buddy right now.

Keep explaining why you are having him eat gluten-free. It may sink in.

You could let it go another 2 months and get him retested and rescoped.

[maximoo]

bloody diarrhea? Has he been chkd for ulcerative colitis?

[justlisa]

Kareng... I agree...

I would like to add: If he was diabetic, would you allow him to make his choices (at 7 yrs old)? I know it's difficult but, would you? "Mom" is, usually, the first line of defense against the bogeyman...in sickness, the disease is the bogeyman... Tough decisions are not popular or easy...especially during the time when they are constantly "testing" us anyway...

Good luck...

[Maybenow]

IMO, you can't expect a seven year old to completely make his own food choices... and these are not unnecessary restrictions that you are placing on him. I agree, if he were diabetic would you allow him to eat candy all day?

The transition is the most difficult part, and you need to move your son forward in the transition phase. When he begins to realize that other foods (I hate to always use "gluten-free" because fruit and veggies are gluten-free) are also tasty, it won't be such a struggle.