Reactions Please Help!

[mamaathome]

Hi Everyone,

I was wondering if any of you can share your, or your children's experiences with reactions. My daughter is only 2, and it is so hard for us to know what is going on with her, since she can't fully tell us. How long after gluten exposure does it take for a reaction to start? How long do reactions last? I am asking this to help us pinpoint what we are doing wrong. Vomitting, irritability, and bloated tummy were her celiac symptoms. She vomitted last Wednesday night, but has been fine since then, with the exception of some crankiness. Now this afternoon she woke up screaming and did not want to be comforted (this happened daily before diagnosis). She admitted (she hates to say yes) after a while that her tummy hurt, then she let me hold her and fell asleep. Now about an hour later, she is fine again. My husband and are are just trying to figure out if this reaction is still from the last one, or if she ran into more gluten today. It's so hard right now, because she has her hands in her mouth so often. We are fairly certain it is not something she is eating, rather that she is touching something around the house then putting her hands in her mouth. We moved the dog's food ot the garage, and wash her hands always before she eats, and whenever we see her touch anything that could have gluten, but apparently we are missing something. Help!

[Merika]

It is sooo easy to miss stuff, you will find more and more things in your food and environment as you go. I don't mean that to be discouraging - it's just the reality of having celiac (I've screwed up my own and ds's diet more than a few times and I am *fanatical* about reading labels, calling, etc.)

The general consensus (and my own family's experience) is that it takes about 4 days for a food reaction to run it's course. It may start almost immediately, or you may not notice for 24 hours.

Things we've taken to watching around the house include keeping drinking glasses/water bottles away from ds that my dh has been drinking out of (gluten), keeping gluten foods/snacks in the kitchen so crumbs don't get everywhere, including the couch and the floor where little sticky hands might end up and then unintentionally go into his mouth.

Also, if you are baking with wheat flour, it can get airborne and inhaled, not to mention it lands all over the entire kitchen - counters, floors, you name it. Ummm, double check all your labels, and then check them again. I've been suprised more than once to see gluten or soy (for us) listed where I hadn't noticed them before.

Oh, and check your own moisturizer and hair products. Chances are that as a parent with a 2 yr old, your hands are all over them, and on their mouth, and their hands are in your hair, and with 2 yr olds, well, everything ends up in the mouth.

It will get easier!!!

Merika

[VydorScope]

HAIR PRODUCTS??? Ugh... I have a lot to learn I guess.. would have never thougth to look there.

[celiac3270]

Yes--there's a lot. A starter list: toothpaste (Use Crest or Colgate, but be wary of those whitening ones and don't use Sensodyne), lotions, soap?, shampoo, licking the envelope (source of controversy), playdoh, etc.

[key]

My son had gluten for one day. We are testing him with a gluten free diet. He had been on the diet for three weeks and I thought, well lets just give him some and see what his reaction is. Yes, dumb I know! Anyway, at first for about 12 hours, there was no reaction. Then suddenly he quit eating, became very irritable, diarrhea started. This reaction lasted from Saturday until about THursday morning he was happy again and eating well again. So now we know that usually with our son the reaction isn't instant.

I know my son has been contaminated from play doh that my other older kids were playing with. Also from graham cracker crumbs my husband left on something. Anyway, it is a learning process. My son still will have further testing with blood work. Not sure about the biopsy, now that I haven't heard very positive things about it being accurate in an infant and he has been basically gluten free for almost 5 weeks now. My pediatrician knows this. He was definitely too sick to stay on gluten while we are away from home.

Anyway, just thought I would share the reaction we had.

Monica

[KaitiUSA]

If he has been gluten free for 5 weeks then blood tests should not be an option unless he gets back on gluten for a while. Being gluten free alters test results and can make a test that should be positive then negative.

They recommend people on gluten heavily for 3 months before testing.

[Merika]

What I've heard from Dr. Pietzak (celiac specialist) is you need to be eating about a slice of bread a day (or its equivalent) for 6 months to be blood tested. My mom had been mostly gluten-free for 3 months before her test, and while she didn't test positive on one of the results (because of the diet) another of the results showed a gluten reaction enough so the doctor said it was basically conclusive of celiac. Sorry I can't remember which test was elevated results and which was normal.

Merika

[mamaathome]

Thanks for your input everyone! The reaction seems to have passed. I'm pretty sure it was the dog food. Thanks!