So Frustrated... Daughter Keeps Getting Glutened.
Posted 15 January 2013 - 07:55 AM
Since November she has been getting better and better and her moods have really improved. Before she was diagnosed she had a lot of weird meltdowns and behaviour that didn't make sense. Now whenever she gets agitated she will almost always complain of a stomachache, so we have to assume she has been glutened.
Our home is 100% gluten-free. She goes to a home daycare twice a week and the woman is really careful and only feeds her rice with basil, raisins etc (no "seasoning" etc). I supply snacks and her own peanut butter etc. I think she might be getting glutened at daycare.
As well my mom watches her one night a week and she seems to get glutened everytime she goes there. My mom is very careful and very well read but her home is not gluten-free.
I just feel so frustrated. We are so careful... but I am starting to wonder if my daughter is extra sensitive. She once had a smoothie from Tim Hortons and got a really bad stomachache right after. Could a crumb of gotten in and set her off? Her blood test results were very high apparently and her Marsh score was a 3B. Just sharing incase this gives some background.
Has anyone been through something similar? Any suggestions? Do I just stick with making her extremely safe foods for a month... 2 months?
On top of all this my 2 year old has been having a rectal prolapse and is on laxatives for months until her rectum can heal. She is also getting the celiac blood test in a couple weeks.
Just feeling really overwhelmed.
Thanks for the support.
Posted 15 January 2013 - 12:28 PM
I think that we are going to start aloe juice - a small amount daily - to help with the healing. I'm still researching that.
Hang in there and take it one meal at a time!
9 year old daughter diagnosed celiac November / December 2012
Postive endoscopy / biopsy, positive antibody test, positive genetic test
She's been gluten free since diagnosis. I've been gluten free with her since Jan 2013.
Posted 16 January 2013 - 08:02 AM
Posted 16 January 2013 - 08:17 AM
Posted 16 January 2013 - 09:17 AM
Posted 16 January 2013 - 04:47 PM
I can give more details if you are interested, but I really wanted you to know that you are not alone. We had to implement a rule for my parents home that they could not use flour starting 48 hours prior to our arrival. Check all hand soaps as well, as hand washing is so important for kids in shared spaces. We provide dedicated gluten free pots/pans/cutting boards/ utensils for shared places where we feel food handling protocols will work. But our default is to simply pack all food from our safe home when possible.
Edited to fix the auto corrected play doh that said dog which reminds me that pets in these spaces can also be problematic because many pets foods are gluten based.
Posted 16 January 2013 - 10:28 PM
I was reading about people having to replace pots and pans etc. I wonder if she could be sensitive to things cooked at the home daycare and at my moms.
Yup ! Porous cooking surfaces used for gluten need to be kept away or replaced for gluten free cooking. This includes, but is not limited to, teflon,cast iron, plastic tupperware type storage containers, plastic measuring cups and spoons, wooden/plastic cutting boards, colanders, rubber spatulas, wooden spoons, baking pans with cooked on residue that isn't scrubbing out of the seams, grimy potholders that grab bready things out of the oven, the electric mixer, the rolling pin, and the toaster needs to be gluten free clean and dedicated. Stored food in the refrigerator, which are dipped into and then spread on bread, such as margarine or peanut butter or jelly,can also be a gluten vector, so the gluten free person needs their own, in a shared household. I would be wondering about any plastic dishware at either the daycare or the relative's, also.
Paper towels are your best friend for laying down quickly on an iffy surface.
For the more sensitive, it is a good idea to avoid shampoos, soaps, and conditioners with wheat and oats, (because the oats can be cross contaminated with wheat, or she could be reactive to oats, too, as are some). Pet foods and cat litters are another place to look for hidden wheat products. I have a dog who is allergic to wheat, and figuring out that the cat was cross contaminating him by drinking out of his water dish, instead of her own was a real trip. Cats also lick themselves, and then spread this all-over-detritus all over your bedsheets, for example, or they try to groom you. Anybody trying to avoid gluten, who has a really large dog who drools this much would be running screaming from the room if they saw such a creature chowing down on gluten dog food then standing close by, with his head clearing their desk, but his allergy, and how he got to be at the dog pound the day I checked the listings, is one of those mysterious coincidences of life that works out. The horse who's allergic to the rye & bermuda grass family and soy, who could get cross contaminated by any of the other pets or horses, before we had the dog who made me realize it was the shared water dish was also a great teacher on this subject. It seems that the rule is that if wheat is anywhere on the property, it will somehow make its way towards the creature who is not supposed to eat it.
And it can be really awkward when relatives mean well, but they gluten you anyway.
Posted 17 January 2013 - 07:00 AM
She is only a couple of months gluten free and , if she is getting gluten at these baby sitting situations, she really hasn't been gluten-free. It can take a few months gluten-free to heal. If she has a lot of damage, many foods could be hard to digest or irritating.
At home, are you using the same PB or butter tub that was used with gluten bread? A fresh colander for gluten-free pasta as its very hard to get gluten pasta out of every little hole. Are the babysitters doing this, too? Does she get play dough or toys with dried play dough on them to play with?
It can take 2 months to get into new habits and figure out the gluten free thing.
She is old enough to eat another kid's cookie but maybe not old enough to understand why she can't have what the other kids have. And when you are five or 45, it can be hard to happily eat your orange while the other kids have chocolate chip cookies
"Children in a family are like flowers in a bouquet: there's always one determined to face in an opposite direction from the way the arranger desires."
~Ralph Waldo Emerson
Posted 17 January 2013 - 07:52 AM
We just found out a couple of months ago that our son is also sensitive to other foods that seem to have kept his intestines from healing. He is anemic and deficient in Vitamin D and was losing weight. He has stopped losing weight since adding liquid iron supplements and eliminating the other foods he is sensitive to (eggs, sugar cane, soy, lima and kidney beans, pecans, and cranberries). Time to go bake some safe foods for him.
Hugs, and hang in there. Always feel so happy when my kid is comfortable and not in pain or itchy or miserable.
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