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One Child Celiac, The Other Not

beth01

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beth01 Enthusiast
beth01
Posted

My daughter who is 11 tested positive for Celiac ( we haven't seen her GI yet but she has been gluten free), and my son who is 9 screened negative, and I also have Celiac.  My house is gluten free and her father's house is also gluten free.  How do people deal with things like this?  I have been talking about just having my son going gluten free exclusively.  Will that cause problems later on since he won't be able to be tested for Celiac? I know you are supposed to test them every few years and if he gluten free the test will be inaccurate, am I just supposed to gluten challenge him every few years? I just don't want him to slip through the cracks in the shadow of his sister and I and miss something that could affect him later on.

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nvsmom Community Regular
nvsmom
Posted

If he is eating 100% gluten-free, it does not immediately matter if he does have celiac disease because you are treating him anyways. It would not make sense to do a gluten challenge since he will be eating gluten-free anyways.

If he is eating gluten, just not everyday, then it does make more sense to do a three month gluten challenge every few years and then retest.

If he develops celiac disease symptoms, he should be tested and be on a strict gluten-free diet regardless of the results. My three kids tested negative for celiac disease although two of them have symptoms. I made them gluten-free as I was not going to risk feeding them gluten if the tests were wrong, which I suspect they may have been. If my son who has no symptoms wants to eat gluten as he approaches adulthood, I will arrange testing for him. The same goes for my kids who had symptoms although I will counsel them to stay gluten-free.

Best wishes in whatever you decide to do.

StephanieL Enthusiast
StephanieL
Posted

I have 1 confirmed kid with Celiac and one who is not, one more who we haven't introduced gluten to yet.  My middle tried gluten to be sure there wasn't any immediate reaction and then has been allowed to eat it out of the house (at school who provided snack and when we go out to eat).  After her first year of preschool with daily snacks we tested her before her (basically) gluten-free summer. We figure that if we see signs we will do a challenge.  Now she is starting K though there won't be daily gluten as I pack their lunches so who knows! lol

 

Good luck figuring out what works for you guys!

Georgia-guy Enthusiast
Georgia-guy
Posted

Disclaimer: I am not a parent, I am not a medical professional (although I feel like I should have a doctorates with all the medical research I've done over the years searching for an answer)

That being said, my personal feelings on the topic would be to allow your son to eat gluten at school, friend's houses, restaurants, etc. keeping an eye out for symptoms, and testing if he starts to show symptoms. That will allow him to live a normal life (being a kid, with birthday parties, sleepovers, etc. a gluten-free diet outside the house would be kinda awkward/embarrassing), and not let him slip through the cracks. Of course, still do the periodic testing in case he is asympomatic.

snowmom Rookie
snowmom
Posted

That being said, my personal feelings on the topic would be to allow your son to eat gluten at school, friend's houses, restaurants, etc. keeping an eye out for symptoms, and testing if he starts to show symptoms. That will allow him to live a normal life (being a kid, with birthday parties, sleepovers, etc. a gluten-free diet outside the house would be kinda awkward/embarrassing), and not let him slip through the cracks. Of course, still do the periodic testing in case he is asympomatic.

 

This is what we do. 4 yr old daughter is celiac, 2 yr old son tested negative and has no symptoms. Our home is entirely gluten-free (except for the occasional beer for us parents :) ). Outside the home, our son consumes whatever he likes, which includes a fair amount of gluten through his daycare lunch program. We will continue testing him periodically.

 

My main concern is that I want the re-tests to be accurate, but also it's a hard diet to follow, and not one that I would sign him up for lightly at a young age. Also, our daughter's preschool is bending over backward to accommodate her celiac, and I wouldn't ask the same of our son's daycare unless I believed it was medically necessary.  (That might not be as much of an issue with older kids, I haven't been there yet!)

kb27 Apprentice
kb27
Posted

We have one kid with and one without celiac.  We keep a gluten-free home, but kid #2 (non-celiac) can eat gluten whenever he is out (school lunches, etc.).  

 

When we got everyone screened for celiac, after kid #1 was diagnosed, we also had kid #2 (and me) have the genetic test done.  Although I have one of the celiac genes, kid #2 did not have any of the ones they tested for (DQ2 and DQ8).  Although I know sometimes people can get celiac without these genes, it is rare, so we are assuming kid #2 is safe.  If we see symptoms, we'll get him checked.  Otherwise, I'm the one who is going to be checked every few years, and I have to make myself eat enough gluten ahead of time to make the test accurate. 

beth01 Enthusiast
beth01
Posted
  • Author

I think that is the route I am going to go, genetic testing.  My daughter hasn't seen her Ped's GI yet, there is one that comes to our hospital from Mayo in Rochester, so I will talk with him and see what he suggests.  Have to wait until June 18th for that. 

 

Thank you all for your input.

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  • 2 weeks later...
Cara in Boston Enthusiast
Cara in Boston
Posted

My younger son and I are gluten free.  Older son and husband are not.  I only cook/bake gluten free and our kitchen is mostly gluten-free.  We do keep bread products, crackers, and cereal in a different area for the two "regulars".  

 

The older son eats whatever he wants when he is out of the house.  We have a system for keeping gluten crumbs to a minimum (rimmed tray used whenever they make a sandwich, etc. . . .it goes into the dishwasher daily)  We use different colored bowls for cereal (red = gluten) so I don't dump the gluten-milk all over the other dishes.  

 

It works out fine.

beth01 Enthusiast
beth01
Posted
  • Author

We went to the Pediatric GI today and he suggested to have him tested every two years and get the gene testing if insurance will cover it. I guess it will be a waiting game with him.  He will be gluten free at home and then eat lunch at school like all the normal kids. Hopefully he stays negative. Thanks for all your input, it's greatly appreciated.

StephanieL Enthusiast
StephanieL
Posted

 He will be gluten free at home and then eat lunch at school like all the normal kids. Hopefully he stays negative. Thanks for all your input, it's greatly appreciated.

That's kind of a harsh statement. I get what you are saying but if you said that to a kid or about another kid it would be really hurtful!

 

As for the gene test, your kids share the genetics if they have the same parents. Chances of the sib having the markers are very high.  Since the genetic test isn't diagnostic, it's not really of much use unless/until the child "converts" to having Celiac disease.

beth01 Enthusiast
beth01
Posted
  • Author

I by no means meant any offense and the "normal" part came right out of my diagnosed child's mouth. I would never call her abnormal for having celiac, I have it myself. To me having celiac is my new normal which I explained to my daughter. Unfortunately children can be mean and she was getting picked on at school for the fainting problems she was having before her celiac diagnosis and some children just don't understand when others have problems with food allergies or when they faint up to seven times a week with no known cause.

 

As for the genetic testing, my thoughts were if he tested gene negative he wouldn't have to go through every two years of gluten challenges since it would be highly unlikely he would get celiac without it. If he starts having health problems that would be the first thing tested for but we could save him from getting his blood drawn and the lab costs of having a whole panel drawn every two years.

  • 2 weeks later...
ashleyld Rookie
ashleyld
Posted

I am a mom of 4 kids. 2 with confirmed celiac disease. Our house is gluten free. The 2 who do not have celiac are allowed to eat gluten when we eat out and places other than home. 

africanqueen99 Contributor
africanqueen99
Posted

I have two kids with and one without - with a gluten-free house and car.  The middle kid is pretty much always with me or fed by me so he's gluten-free, but every once in a while my husband will take him out for a "gluten fest".

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