We Feel Trapped In Our House! She's Soooo Sensitive!

[Momof2cuties]

My DD, Ali, was diagnosed with celiac a couple of months ago and has been gluten-free and casein free since. She does fine at home, but if we leave the house to go ANYWHERE she manages to get sick!! I would think that if it was from something around the house (soaps, detergent, shampoo) it would be everyday.

The church nursery is the absolute worst. The poor kid is sick every Monday and every Thursday! We've had the carpets shampooed, replaced all of the kids' snacks, washed all the toys...she still manages to get sick like she's been "glutened". I can't go to the grocery store. I can't go shopping. We feel totally trapped in the house!!

Is there any hope that she'll be less sensitive over time? Will her little system heal and get stronger? Or will she likely be this sensitive for life?

If anyone has any suggestions I'd love to hear them. Thanks!

Stephanie

[buffettbride]

18 months old--that's tough. At that age there is still so much hand/mouth contact, she could be getting glutened from just about anywhere. Is anyone kissing her on the mouth who might be wearing gluteny lipstick or something like that? Could anyone be sneaking her gluten thinking it's OK if it's just a little?

Is there someone who could babysit the kids at your home so you and your husband could get out for a while? My DD is 10 and I feel trapped sometimes. We were very much a convenience food kind of family before she was dxd and it has definitely been a change from what we were used to.

[Ursa Major]

We had a kid with a peanut allergy at our church. Everybody who was entering the nursery had to wash their hands before they could get in.

Since all the mothers/fathers, kids, caregivers likely have gluten on their hands and /or faces from breakfast on Sunday morning, or supper on Wednesdays, that is likely how Ali gets glutened.

Why don't you suggest that everybody who comes into contact with her has to wash their hands before entering the nursery, to see if it makes a difference? And no, those antibacterial rubs won't help, because they don't get rinsed off with running water, because gluten can't be killed (it isn't alive, after all).

Take wet wipes to the grocery store to wash off the cart handle and the parts of the cart she touches while shopping. It might help.

I know it is a pain. But hopefully, as she heals, she will be somewhat less sensitive.

[ptkds]

I dont' have any advice, but I just wanted to let you know that I know how you feel! I have 2 toddlers with Celiac, and I am constantly stressed out when I take them anywhere. Kids this age just pick up and eat whatever. And toddlers like to share food and cups! Luckily, the nursery in our church is VERY small (currently there is only 1 other child in there on a regular basis). They provide snacks that are safe, such as fruit and cheese. But our church potlucks are a definite no-no for us.

The wipes idea is a good one. You can put a little box by the Nursery door with a note stating that one of the children has a severe allergy to wheat and milk (I know that isn't the exact truth, but that is what ppl understand), and ask that everyong please clean their hands and their childs hands. And talk to the nursery leaders about bringing safe treats for ALL the kids so you don't have to worry about sharing! At my MIL"s church, there is a note on the microwave saying something like: "Do not pop any popcorn on Sundays. Someone is severely allergic and can't breath with the smell in the air" I don't think they have a problem with it anymore.

I feel like I have to watch my kids like a hawk because they will pick up anything they think looks interesting! My 6 yr old is SO much easier to take somewhere!

Good luck! it will hopefully it easier!

ptkds

[gfgypsyqueen]

In a short time your child will be just a little older a little better equipped to listen and follow rules. Two yrs old seems to be the magic year for my kids. One diagnosed with peanut/tree nut allergy at 2. The other diagnoised with celiac at 2. Fun! My gluten-free/CF daughter is 2.5yrs old and she gets mad when I say she can't have something (shared house) but she is learning to ask for her version. (She been gluten-free for a a little over two months.)

The only explaination I have for her is "No. no. ___ will hurt your tummy. Do you want your cookies?"

We also have a strict no food sharing policy. And no accepting food from any adult unless parents tell her that person is ok. (So far that person has been the class teacher that understands allergies.)

If she is really sensitive, I found that high quality liquid vitamins make a difference in her overall health. I am super sensitive, but I go out and eat out just fine. I also believe I have a wheat allergy on top of this. So watch to see if the symptoms are different - it may mean some other food issue going on.

As for church, go hang out in the church nursery for a few days. Not as a worker. Just hang out and watch for problems. (This has been a huge help at daycare and at elementary school.) Talk to everyone. Use this as a chance to answer questions about celiacs, what it does to her, cross contamination, little bit or a lot will hurt her the same, etc. Also, make or buy her a cute shirt or pin to wear that states "I have severe food allergies, please do not feed me ANYTHING!" Another thought, if the church nursery teachers are the same, assign one person to be responsible for ensuring that food and drink for your child are safe. Provide extra snacks and juice as backups. Provide gloves for handling all food. See if the church will try making the whole room gluten-free/CF for a few weeks.

Good luck

[kbtoyssni]

Could it be something other than gluten? What about chemical exposure or mold?

[gfpaperdoll]

People do not understand that if they touch cookies & then touch your daughter's food or drink cup that they just contaminated your daughter. Also, I agree with the others, that she could be getting the contamination from the other kids hands & faces & from the adults...

[Rachel--24]

Could it be something other than gluten? What about chemical exposure or mold?

I was wondering the same thing. If shes getting sick every single time you leave your house...what might she be exposing herself too?? Is there something in the car?? I would check for mold.

[taweavmo3]

I can relate......my little girl is really sensitive. She has been gluten free (along with our entire house) for over 2 years now, if anything she gets more sensitive with time.

I wish I had some words of advice, but the only thing I know to do is just wash their hands as much as possible when out and about. We avoid all the fast food play areas, we tried going for a while, but she always got sick. It didn't seem to matter if I washed her hands or not...I guess those minute gluten crumbs sneak in no matter what!

Some things do get easier with time tough.....my dd is five, and things don't revolve around food quite so much now. In church, the kids don't do snacks anymore which I am thrilled about. And school (although we homeschool now) doesn't do nearly as many "food" craft projects like they did in pre-school. I remember last year, I was bringing in gluten free subsitutes every week, all their crafts revolved around food, it drove me crazy!

Keep your chin up, she may always be very sensitive, but it does get easier once they get out of the toddler stage!

[Juliet]

My son was diagnosed at 2, and he was getting sick all the time after going gluten free. He learned after about 3 months not to just eat everything he saw, but it took him until 2 1/2 not to even pick up and throw in the trash the goldfish cracker he sees on the ground. And he's a thumbsucker (still - at 4), so cross contamination has ALWAYS been a problem. We handled it by not putting him in group situations unless the child to adult ration was very high (like one adult for every 2-3 kids). And even then he was getting mild gluten attacks at least every few weeks. And I know this is not always possible for everyone, I can only say, at least it gets easier as they get a little older since they don't put their mouths on everything like they do at 18 months to 2 1/2.

And actually, my son is more sensitive now. But he gets sick less often, even now that he's in pre-school two days a week (1 adult for every 13 kids now). He knows to wash his hands before handling food, we give him placemats to set his snack and lunch down, etc. When we go out to eat or snack somewhere, I wipe down EVERYTHING - table, chairs, hands, etc. And we avoid the serious gluten havens like Chuck E. Cheese, IHOP, etc. And we avoid most indoor playgrounds, too, that are affiliated with fast food places (no McD's playgrounds).