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My Son's Gluten Trial Is Making Me So Sick

julandjo

By julandjo
in Coping with Celiac Disease

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julandjo Explorer
julandjo
Posted

Some background info: my kids have both had multiple food intolerances since birth. Gluten has always been the worst offender; even when they were strictly breastfed they reacted to it in my milk, so after their initial exposure and reaction, they've lived gluten-free. Once I was dx'd w/Celiac, I made the house gluten free because I'm very very sensitive.

In the past 6 months, my son seems to have outgrown almost all of his food intolerances, so we decided to put him on a gluten trial. He's 4 weeks into it and seems to be doing fine. He's eating the gluten-laden breakfasts and lunches at daycare (holy horrible nutrition!), but since he's only there 3 days a week we're loading him up at home too. We're doing this so that we can get him tested. Regardless of the results, once this trial is over we'll be going back to a gluten-free home and he'll be eating what I cook and send to daycare (also gluten-free obviously). We just want to know if he's + or - so we know how to approach parties, sleepovers, etc.

The problem? I'm getting CC'd like crazy! He just turned 5, so as you can imagine he's tracking crumbs all over, touching drawer handles, fridge/doorknobs, giving me sloppy kisses, etc. I'm being as careful as I can and washing my hands before I eat anything, but somehow I'm still miserable. (Don't worry; I'm not using any of my cookware, etc.; all his gluten food is prepackaged).

Given that he's lived 5 years 100% gluten-free, how long does this trial need to be to get the best possible blood test results? Thanks in advance!

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sa1937 Community Regular
sa1937
Posted

Given that he's lived 5 years 100% gluten-free, how long does this trial need to be to get the best possible blood test results? Thanks in advance!

For adults I've read that a gluten challenge should be approx. 3 months eating the equivalent of 3 to 4 slices of bread a day. I don't know how that would translate for children.

It sounds like you're in quite a predicament since you are getting sick from CC. Is it possible to make him eat at the table and then make sure he washes his hands and face afterwards? You are in an unenviable position.

julandjo Explorer
julandjo
Posted
  • Author

Is it possible to make him eat at the table and then make sure he washes his hands and face afterwards?

I've tried this, but getting this kid to eat is like pulling teeth. We eat dinner as a family every night, and my husband and I are ready to pull our hair out with the constant "eat", "stop fighting with your sister and EAT", and finally "you either eat NOW or you go to bed NOW". :rolleyes: This kid is all muscle and bone and could care less about food! Since all our meals are gluten-free, he has to eat his gluten as snacks. Fat chance of getting him to sit in one place for that; he'd rather not eat! Since my 3 yr-old daughter still reacts to gluten (and is hurt when he gets crackers/cookies that she can't share) we try to get him to eat his snacks in his room, but invariably he wanders out for something or other, or is playing with shared toys while he snacks, etc... I think we just have to ride this one out and do our best to limit CC. I just wish it didn't have to go on for so long!

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I've tried this, but getting this kid to eat is like pulling teeth. We eat dinner as a family every night, and my husband and I are ready to pull our hair out with the constant "eat", "stop fighting with your sister and EAT", and finally "you either eat NOW or you go to bed NOW". :rolleyes: This kid is all muscle and bone and could care less about food! Since all our meals are gluten-free, he has to eat his gluten as snacks. Fat chance of getting him to sit in one place for that; he'd rather not eat! Since my 3 yr-old daughter still reacts to gluten (and is hurt when he gets crackers/cookies that she can't share) we try to get him to eat his snacks in his room, but invariably he wanders out for something or other, or is playing with shared toys while he snacks, etc... I think we just have to ride this one out and do our best to limit CC. I just wish it didn't have to go on for so long!

Why not get some eqivalent gluten-free snacks that your 3 yr old can have and make them both sit at opposite sides of the table for snack time? Having the 5 year old in his room eating gluten is bound to be less safe for you and your 3 year old since he will have gluten all over things you have to touch and clean later. He may also be confused by the whole thing--being given a snack and then sent to his room is almost like a punishment (even though you don't mean it that way--he may not get that and not want to eat because he is trying to figure out why you want him to stay in his room).

julandjo Explorer
julandjo
Posted
  • Author

Why not get some eqivalent gluten-free snacks that your 3 yr old can have and make them both sit at opposite sides of the table for snack time? Having the 5 year old in his room eating gluten is bound to be less safe for you and your 3 year old since he will have gluten all over things you have to touch and clean later. He may also be confused by the whole thing--being given a snack and then sent to his room is almost like a punishment (even though you don't mean it that way--he may not get that and not want to eat because he is trying to figure out why you want him to stay in his room).

Oh, he totally understands why we ask him to eat those particular snacks in his room. From the time he could talk he has asked people if the food they're offering has gluten in it, and he's a total watchdog for everything his sister eats. He's very conscious of my and his sister's need to be gluten-free, and it's a treat for him to get to snack alone. Sometimes I'll turn on their favorite cartoon and let him snack while watching that because then his sister is too entranced by the TV to notice they're not eating the same thing, ha! We've been very careful in how we're approaching the emotional aspect of this. We're not doing equivalent snacks for the other child because this isn't the type of food we want either of them to think is normal or healthy as a daily snack. Snacks here are usually fresh fruit or veggies, popcorn, cheese, etc. These gluten snacks are all processed crud and bread. ;) It's not at all how I want him to eat, but I can't have gluten being cooked in my house so I'm sort of stuck feeding him this. I do worry how it's going to seem in his mind when we take this stuff back out of his diet though... I don't want him to have an unhealthy relationship with food, you know?

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Oh, he totally understands why we ask him to eat those particular snacks in his room. From the time he could talk he has asked people if the food they're offering has gluten in it, and he's a total watchdog for everything his sister eats. He's very conscious of my and his sister's need to be gluten-free, and it's a treat for him to get to snack alone. Sometimes I'll turn on their favorite cartoon and let him snack while watching that because then his sister is too entranced by the TV to notice they're not eating the same thing, ha! We've been very careful in how we're approaching the emotional aspect of this. We're not doing equivalent snacks for the other child because this isn't the type of food we want either of them to think is normal or healthy as a daily snack. Snacks here are usually fresh fruit or veggies, popcorn, cheese, etc. These gluten snacks are all processed crud and bread. ;) It's not at all how I want him to eat, but I can't have gluten being cooked in my house so I'm sort of stuck feeding him this. I do worry how it's going to seem in his mind when we take this stuff back out of his diet though... I don't want him to have an unhealthy relationship with food, you know?

If you plan to go back to that way of eating at home regardless of the test results then I would just postpone testing for longer and not feed him gluten at home, but allow him to have it at school and friend's houses for the next 6 months. The standard they always say for adults is to gluten up good for around 3 months but I would think that you could also get the same results eating gluten for two meals a day for a longer period of time. So long as he is not having symptoms I don't think you need to worry about extending the gluten-free trial period to get him tested. Also if you do the tests and it's negative you can (and should) still test again in a year or two to make sure it's still negative. This is all assuming he does not get sick or show signs of failure to grow, etc. while eating gluten outside the house. If he understands why he can't eat those types of snacks at home (even crumbs can make you and sis sick) then he is more likely to accept the type of snacks you give him at home than to get upset that he can't have gluten snacks anymore once this trial for testing ends. If your main goal is to allow him to eat gluten outside the home if he's not intolerant/celiac then it seems like just doing that would be the best way to proceed for the trial/testing period too. I feel for you being is such a difficult place--you want more options for him but you need to watch out for the health of you and his sister as well. I hope you can work out a plan that does both those things!

julandjo Explorer
julandjo
Posted
  • Author

If you plan to go back to that way of eating at home regardless of the test results then I would just postpone testing for longer and not feed him gluten at home, but allow him to have it at school and friend's houses for the next 6 months. The standard they always say for adults is to gluten up good for around 3 months but I would think that you could also get the same results eating gluten for two meals a day for a longer period of time.

Do you think? This would be perfect for us, but how can I find out for sure if this will work? His GI doctor has been zero help - he insisted on testing my son for Celiac several months ago despite the fact that he was gluten-free. When the tests OBVIOUSLY came back negative, he assured me that DS does not have Celiac and that I should feed him anything. I reminded the nurse on the phone that of course it was negative due to his diet, she got snippy and told me that if he was truly a Celiac, there would have been "Celiac cells" evident on the biopsy. :blink: You can't reason with stupid.

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Do you think? This would be perfect for us, but how can I find out for sure if this will work? His GI doctor has been zero help - he insisted on testing my son for Celiac several months ago despite the fact that he was gluten-free. When the tests OBVIOUSLY came back negative, he assured me that DS does not have Celiac and that I should feed him anything. I reminded the nurse on the phone that of course it was negative due to his diet, she got snippy and told me that if he was truly a Celiac, there would have been "Celiac cells" evident on the biopsy. :blink: You can't reason with stupid.

If the tests are negative you won't know why for sure (is it a false negative or he really doesn't have it or his celiac hasn't been triggered yet). But that would be the SAME even if you had no restrictions and could gluten him up really well for 3 months. Since you do have celaic, no matter how you were to do his trial you would want to keep retesting him every few years anyway due to your genetics. So yes I would take the easier/safe for you way and just let him have it outside the house so long as he has no symptoms and continues to have negative tests.

nora-n Rookie
nora-n
Posted

I have read through some abstracts on pubmed about gluten challenge, and the shortest time I read was 6 weeks.

Another abstract says that time also is an issue, meaning if they test a group of previously diagnosed celiac children, some will turn positive after six weeks, some after 8 weeks, and some after six months, and even many more months.

I read the minimum recommended gluten dose is 0,3 g gluten per kg, and the newest recommendation is 0,5 g gluten per kg.

This may be much much more than three slices a day, at least for adults.

Maybe go over to pubmed.com and do a search.

sariesue Explorer
sariesue
Posted

Do you have any friends/family in the area who are not gluten free? They could make him healthier snacks than the prepackaged ones. Also one way to make snacks healthier would be to supplement them with a healthy food. Like cheese and gluten crackers or and you could do wheat filled dip for veggies. Instead of just giving him a slice of bread. Gluten pretzles aren't too bad for you either, since they tend to be low fat.

anabananakins Explorer
anabananakins
Posted

How about something flavoured in his milk? One of those chocolate or strawberry powders - a lot of those have malt in them. They'd be less messy and maybe you could find a gluten free version for your 3 year old.

navigator Apprentice
navigator
Posted

I'm currently back on gluten as I'm getting scope and biopsy. I live in Scotland and was advised by doc to be back on gluten for 6 weeks. The same advice is given for blood test. I don't know if this is based on credible research or not.

nora-n Rookie
nora-n
Posted

navigator, there are some abstracts on gluten challenge on pubmed, and it may take six weeks, or it may take 3 months, or much longer to get a diagnosis after going back on gluten. Or , never.

My biopsy was negative after five weeks back on gluten, and in the literature the shortest time I found was six weeks.

navigator Apprentice
navigator
Posted

navigator, there are some abstracts on gluten challenge on pubmed, and it may take six weeks, or it may take 3 months, or much longer to get a diagnosis after going back on gluten. Or , never.

My biopsy was negative after five weeks back on gluten, and in the literature the shortest time I found was six weeks.

Thanks - I'll check them out. I'll have been back on for 7 weeks when I get my endoscopy and I am concerned about getting false negative. I'll post results when I get them

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