Keeping Kids Gluten Free Who May Not Need To Be

[Amyleigh0007]

I have chosen to keep my 16 month old daughter gluten free because my 8 year old son has Celiac. I do not want her to go through the same hell as my son. We are a gluten free home and have never felt better. But, I am curious if she carries the Celiac genes. I know a bloodtest wouldn't be accurate so I posted a question on my local support group website about which gene tests I should ask for and I was shocked at some of the responses I received. Some people were upset that I would keep my daughter gluten free without knowing if she really needed to be. Others suggested I forgo the gene testing and just give her gluten to see if she has a reaction. Some said they would never have a non-Celiac child off gluten because life would be too hard for them and they would get made fun of in school for no reason. I couldn't believe it. I know many of you are keeping your young children off gluten because of the same reason I am but I would like to hear your stories. I need some support here! I am feeling pretty beat up!

[dandelionmom]

A gluten-free diet isn't going to hurt anyone. Those people are clearly alarmists. If you're concerned, consider a trial when she's school aged (that's what we plan to do for my 2 y/o).

People on message boards can be big boogers sometimes. Sorry.

[celiac-mommy]

Overall, a gluten-free diet is healthier-with some exceptions, I know-and it's your decision to do what you think is right for your child. Neither one of my kids has ever been made fun of because of Celiac disease. There may be questions once in a while regarding their participation in snack time, but never anything malicious (sp?). My ds tested negative, but as far as we're concerned has the disease, so he is gluten-free, my mom tested negative, but she chooses to live gluten-free, there's really no harm in it as long as she's getting a variety of healthy foods to nourish her body. I can't understand they way others think or perceive things sometimes

I personally think you've made a very responsible decision for your family, you should get no flack for that!!

[emcmaster]

My husband and I are not planning on having children, but if we did, we would absolutely keep our kids gluten-free until they could be tested. Absolutely.

[Fiddle-Faddle]

My 7-year-old is the only child in our family who might not need to be gluten-free. She has had inconsistent reactions to gluten--a severe tummy-ache one time, but no reaction whatsoever the next. However, she does remember the severe tummy-aches, and she sees her older brothers being REALLY good about staying away from gluten (even though none of them have had official testing, they know from their own experience what it does to them).

She also has a classmate who has some kind wheat allergy (at least, that's what his mother calls it. It manifests as constant sinus and ear infections.), who is supposed to be wheat-free. His mother "can't bear to watch him suffer," so she lets him cheat at least once a week or so, and follows up with extra allergy meds. My daughter keeps looking at what he's eating, and telling him he shouldn't be eating it because it has gluten!

Several times,now, I have sent her to school with extra gluten-free homemade chocolate cookies, or bread, or a roll, to share with him (and emailed the recipes to his mom), who reports that he loved them, but I don't know if she's ever bothered to REALLY try him on a gluten-free diet.

The upshot of this, though, is that my daughter sees how often he gets sick, and she doesn't want to have to deal with that herself, so she (so far, knock on wood) is really good about it. (And she also knows I'll make her a gluten-free version of whatever she wants.)

You are totally being a wise and caring mother, and those who criticize you are ignorant at best, and nasty shallow idiots who are just looking for an excuse to criticize you at worst.

[caek-is-a-lie]

I know how you feel! I recently went gluten free and it's helped me immensely. I have a family history of Celiac and my 4 yr old son has recently shown signs of reacting to gluten, but really slight neurological symptoms, not many GI symptoms. When I get my tax return I'm going to HLA type both of us through Enterolabs so I know if he inherited anything from me. When I was pregnant I ate more gluten than I had in years and I think it had an effect on him. I didn't know at the time that I was gluten intolerant, so I try not to feel too guilty. I'm convinced gluten intolerance caused my Narcolepsy and I'd hate to have this knowledge and not put him on a gluten free diet and have him end up with some chronic disorder because of it. It just seems irresponsible to me. His pediatrician doesn't seem to think it's a problem, and I'm sure I'd be setting myself up for a hard time with daycare meals at a time when I'm just figuring out my own diet, but I do think I'll be putting him on a gluten-free diet within the next couple of years. If that HLA type comes back with a predisposition to it, I'll probably do it sooner than later. But it seems like it will be so hard if it's just a "mother's whim" and not "doctor's orders", but maybe the HLA typing will help. I'm just going to have to deal with that I guess...I know my instinct is better than any doctor that's seen him once.

I think you're wise to want to put your daughter on the diet, too, considering the family history. I bet she'll be much healthier in general, even if she isn't gluten intolerant. I wish I had grown up gluten free. I might not have the neurological problems that I do today.

[taweavmo3]

I am in the exact same boat you are. Watched my daughter get sicker and sicker for two years, and she still has speech and learning difficulties even though she's been gluten free for 4 years.

After learning how crucial those first three years of life are, I wasn't going to take a chance with my two youngest. What finally prompted me to put all the kids on the diet (and myself) was when my son was diagnosed with psoriasis at the age of 5. I then had two kids with an auto immune disease, and I was going to do what I could to give my two youngest a healthier start. My youngest has been gluten free since birth, and has been the healthiest out of all the kids. AND, she is the only one who hasn't been speech delayed!

I think when there is a family history of celiac, it is reasonable to wait until you feel ready to give your child gluten. Why not wait a few years for their immune system to mature, and for speech and motor skills to develop? Or, and this is my plan....when they are old enough to realize how it makes them feel.

I was planning on having my kids gene tested too...since I have one celiac and 2 others with a sensitivity. I also think my husband should be gluten free, 34 years old and he still can't tolerate milk, lol. Our kids probably didn't have a chance!

[Mother of Jibril]

Our ten-month old son is severely intolerant to casein and corn. If he has even a tiny bit, it gives him eczema on his face. It's a reminder of when he was just a few weeks old and SO sick from the casein in my breastmilk. We're assuming that he's also intolerant to gluten. He can try it when he's older... for now, we're not taking any chances. Early childhood is such a crucial time for physical and mental development. He's always going to be "that kid" so who cares if we leave gluten out too.

Our three-year old seems to be sensitive to gluten. She wasn't able to finish potty training until we put her on a gluten-lite diet (too constipated, and then it hurt to make #2). We've been letting her have a little bit of gluten here and there... pizza day at school, for example. Otherwise, I send her to school with gluten-free lunches. I definitely want to get her tested (genes and blood) in the future... we'll see how soon we can scrape together the money. Overall, she's growing well and is generally very healthy... just like her dad. I had lots of problems with infections and tonsillitis at her age.

Every situation is so different. If you know that your kids are healthy and happy on a gluten-free diet, who cares what other people think? They don't have to take care of your kids or deal with the long-term consequences of damage from gluten intolerance.

[purple]

Our case is the opposite. My 2 dd's are gluten-free and we are not. I think its a pain of course BUT we have never eaten this healthy before. Much less chemicals, additives, preservatives, artificial junk, etc...

No more fast food, garbage food, poisoned food (like the super size me movie). I try to make gluten-free food only, sometimes gluten/gluten-free at the same time, mostly cause its cheaper. I have learned how to make so many yummy recipes that I would never have tried before. I am glad we are mostly gluten-free and the girls are gluten-free, one is also vegan . We eat alot more "live" foods now and are killing the "dead" foods

My girls are older. I wish we could've started the gluten-free diet sooner so my oldest would have learned how to cook before she moved out. I make and freeze her food often so she won't be tempted to eat gluten.

My other dd (17) takes gluten-free/vegan food to school. She gets smart remarks but it doesn't bother her. It is actually a gluten-free awareness to the other kids. She has a friend that gets sick when she eats fast food...hm.

Yes we miss things, mostly the convenience of some products like condensed soup but now the labels scare me with ALL those items in it. I would rather spend my $$ on real food than food that makes you sick.

"Eat to live instead of live to eat"

[dilettantesteph]

My 14 year old daughter and husband are gluten free in our home so that my 11 year old son and I don't get sick. They are happy to do it. We are both pretty hard to live with when we are sick. When we had a mixed kitchen we got sick a lot. My daughter can eat school lunches and get gluten there and my husband can have lunch out at work. Don't let those people give you a hard time. When she is older and in school she can get some gluten. I don't see how it is some great hardship living gluten free. We eat well. Even my daughter agrees with that. I cook a lot more now than when I was sick all the time. She has it a lot better now.

[Pattymom]

My dd, now 4, reacted to everything in my breastmilk a an infant, so that' whe I went gluten and dairy free. She was off both unitl she turned 2, with no tests other than when I stopped eating it in infancy she changed from a rash covered screaming baby with foul diarhea to a soft skinned happier baby with normal bm. At 2 we gave her the offending foods, adn she showed no acute reactions at all, though aftera year we realize her growth had basically stopped. So, keep her off until you feel ready,it is not hurting her. I would get the gene test done. And when/if you decide to give her gluten, I wouldn't rely on just obvious symptoms to determine if it's effecting her. f I could od it over, I woudl have had a biopsy done when we realized the growth issue was there. (we di ddo a blood test, which was negative, I took her off gluten and dairy anyway. Seh started growing a little, but not a lot. wo we areat the awful place of deciding whether to put her back on to biopsy, or just beign patient)

So, I have no regrets about keeping her off totally for 2 years. If anythign, the more I read, the happier I am. She was symptom free, healthy and hit all her developmental milestones. I'm glad my gut instincts saved her so much discomfort.

Patty

[Amyleigh0007]

My daughter, who has never had gluten, has never been sick (knock on wood!). Even when everyone in the family had the flu last year she did not catch it. My son, on the other hand, had an ear infection about once a month starting when has was an infant. He also had speech delays and gross motor delays. I am convinced gluten is to blame for my sons illness and delays. I am also convinced my daughter is so healthy and thriving because she has never had gluten! Thanks for the encouraging words. Gluten is nasty stuff!

[mstroud]

In my our family, three of us are gluten free ... my 8 year old son (diagnosed with Celiac disease), my 5 year old son (postive genetic markers and had some bad emotional / behavioral issues and constant fatigue), and me (also positive genetic markers, depression, RLS, etc.). My 5 year old and I tested negative on the blood work, but I would't eat or give him gluten if you paid me! I do have a 2 year son who is gluten free at home, but does eat the 'normal' snacks at preschool twice a week and occasionally a snack that a friend gives him. The more I see him after the snacks the more I want to have him tested ... he gets really dark circles under his eyes, his diapers change for a few days, and his weight has dropped off a bit a few times.

I personally think it's great that you're keeping your daughter gluten free. I'm still new to this whole gluten free world, but as far as I can tell, you're not hurting your daughter at all! I have friends who give their children some of the Envirokids gluten-free products just becaus they're healthier than other bars or cereals!

I feel like I need to make a decision about my youngest and make him gluten free. I'd test him now, but we're swimming in the bills from having 3 of us tested and my oldest having an endoscopy (his blood work was questionable) this past year!

Margaret

[Bridy]

I think you are doing the right thing.

We don't know for sure if our daughter has Celiacs but an allergy test has shown positiove for gluten.

I am thinking it is so much easier for everyone in the family to eat the same. But we wont keep our son away from gluten 100%, his exposure will be very limited.

[sugarsue]

Hi! Their responses are confusing to me because when I think of good healthy food, it does not include wheat! As long as the child gets healthy carbs, protein, fruit and veggies, there's no reason to think they also need gluten to be healthy! I think it is just ignorance that causes those comments! I agree with the other poster, gluten is nasty stuff and many people benefit from gulten free for so many different reasons!

[NewGFMom]

My daughter (who has had no signs of celiac, and negative bloodwork) gets no gluten at home. But she eats regular pasta at daycare three times a week and also gets some when we go out to dinner. The house is gluten-free for my 5 year old, so she never gets any at home.

Nobody is deprived of great food in my house!

I think people that don't underestimate what great food you can eat without gluten. I make cake, pie, everything. I know other people who have celiac who are waiting until their kids are older to introduce gluten.

It's not that unusual and it's a perfectly reasonably thing to do (in my opinion).

[Kibbie]

My 3 nearly 4 year old daughter has Celiac Disease and I have a 3 month old baby boy I have EVERY intention of keeping him gluten free as long as I can. At home for sure.... what she eat's he will eat... because its easier that way on me and on them. I did order the genetic test for my son to know if its a possibility... that way when he is older and away from home we can at least be aware of the possibility.

As far as kids getting made fun of.... we'll sadly that's a part of life... but I seriously but making fun of what a kid eats... thats just dumb. Kids make fun of names, toys, clothes and things like that not the food you eat!

Go with your gut.... its always right!

[MarsupialMama]

My first child showed no symptoms. My second child was devastated by celiac (failure to thrive type thing) and was REALLY bad off. We discovered the gluten connection and went gluten-free. She got better. We put the first child on gluten free as well (we all are gluten-free now) to make meal prep easier. Surprisingly, her belly slimmed down. We had not thought that she had any problem - she was a child who LOVES food, and we just thought she ate a lot so her belly would look large. Not so. It was big because of a gluten reaction. I would never have guessed. Now I have a 2 month old son, who I will raise gluten free so we don't have to go through "the same hell" that we have with daughter #2. Our reasons are:

There is a high chance he will be sensitive in some way,shape,or form, and its not worth chancing his health if he is.

He is not going to be unhealthy by having a gluten-free diet.

My second daughter is SO sensitive to gluten (it DEVASTATES her to NOTHING and a million other symptoms) that I don't want gluten in the house at all. A bread CRUMB or speck of flour dust will shut her intestines down for about 3 weeks, and during that time she becomes a skeleton, living off her own fat and muscle stores. It is pitiful. It's not worth having a gluten accident in the house.

We have three people already gluten free (my husband eats gluten out sometimes, or will grab a slice of bread from the freezer to put in his lunchbox) so it is a matter of making "special food" for my new son to EAT gluten! Why go to THAT trouble? loL!

[Aleshia]

At 2 we gave her the offending foods, adn she showed no acute reactions at all, though aftera year we realize her growth had basically stopped. So, keep her off until you feel ready,it is not hurting her. I would get the gene test done. And when/if you decide to give her gluten, I wouldn't rely on just obvious symptoms to determine if it's effecting her. f I could od it over, I woudl have had a biopsy done when we realized the growth issue was there. (we di ddo a blood test, which was negative, I took her off gluten and dairy anyway. Seh started growing a little, but not a lot. wo we areat the awful place of deciding whether to put her back on to biopsy, or just beign patient)

Patty

patty, I'm glad you knew about the gluten enough to keep her off of it for the first 2 years... I had no idea that I was gluten intolerant and gluten affects all 3 of my children in different ways. my now 2 year old was started on solids at about 4 mo. old and lost 2 lb. then slowly gained it back but only gained 2 lb. and maybe an inch or 2 of height over the next 12 mo. so by the time he was 17mo. he was still in the same size clothes he had been wearing at 4 mo. anyway, I was in the process of discovering how gluten was affecting myself (lots of weird symptoms) and then took my 4 yr. old (then 3) off of gluten because of his tantrums and just freaking out and fussing over EVERYTHING I saw a huge improvement there and also in his BMs so then I was reading up on gluten and its affects on growth so I took my 17mo. old off of gluten and he started gaining a lb. a month! my 5 yr (then 4) was in pre-k and was having snacks every day and constantly complaining of tummy aches and not feeling good, she seemed to be doing a bit better since going gluten lite (eating gluten-free at home and only having gluten at snack time in school) so after school ended I took her off of gluten completly and she hardly ever complains of a tummy ache now! who cares if they haven't been tested! that can come later, right now our household is completely gluten-free my husband has gluten sometimes at work for lunch but we just moved to where he can walk to work so he is coming home for lunch more now also. anyway, when my kids are older I will give them the option of having gluten and then getting tested or just continuing on the diet but for now they are healthier and happier than they were with gluten and we haven't seen or heard any teasing from other children at this point. their teachers have been very understanding and my son has his own snack cupboard at school so the teachers can give him something similar to what the other kids are having that day (all the students have a snack day when they bring snack for everyone so you never know what they are going to have!) I supplied them with a few different kinds of crackers and some chocolate cookies for when they have a treat. they know he can have fruits or veggies with the other kids, juice or milk or whatever and also string cheese, so basically it is just whatever baked goods are brought in like crackers or breads or cupcakes. the preschool director is actually gluten intolerant so I can rest easy that she knows what he can and cannot have. (sorry for rambling)

[kbtoyssni]

I see nothing wrong with feeding your kid gluten-free at home and sending her to school with gluten-free lunches, regardless of a diagnosis. Everyone eats differently. My mum never sent me to school with things like fruit snacks or chips, but that doesn't mean she was a bad mother and was "depriving" me. If your daughter is eating healthy food that she likes the taste of, who cares if it's missing an ingredient that most other kids eat. And with your family history, it seems like a responsible, logical decision. I have trouble understanding people who think a gluten-free diet is a deprived diet.