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So Frustrated... Daughter Keeps Getting Glutened.

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Posted 15 January 2013 - 07:55 AM

My daughter is 5 and has been diagnosed with Celiac recently. She has been gluten-free for 2.5 months. The first month was so horrible. She was having meltdowns everyday and her behaviour was just out of control. She likes the gluten-free diet and had no problems cutting it out.

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.
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Posted 15 January 2013 - 12:28 PM

I've been feeling the same way off and on, but I think now that my daughter is just having a hard time digesting everything until the damage in her gut heals up. I have found that for us, gluten free is not enough. She needs a very low carb diet that is high in protein with foods that are easy to digest. She is doing much better now that we have added daily kefir and removed sugary breakfast cereals. At least she's been doing better for the last several days. I'm hoping it sticks!

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!
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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.

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Posted 16 January 2013 - 08:02 AM

You might want to skip the restaurant meals until things calm down. It is just one more variable when things are already hard to figure out. It can take some time to get used to everything. Be patient. It is easy to get overwhelmed. It hard to feel responsible when your child gets ill. You can only do your best. Forgive yourself your mistakes. Different celiacs vary when it comes to onset of symptoms after eating gluten. With me I notice the next day. With my son, it takes two days. You need to figure that out to help determine the source. Keep a journal where you write down everything, food eaten, source, health, where she ate. Whole foods help to make things more simple.

Good luck.
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Posted 16 January 2013 - 08:17 AM

Might she be playing with Play Doh or do they have it at the daycare? Could you have any shampoo or toothpaste with gluten? Pet food?
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Posted 16 January 2013 - 09:17 AM

Thanks so much for the replies. We mostly eat a whole foods diet and don't eat out at all (except for that one smoothie). I feel like we are so careful. I think maybe we need to go to basically 100% whole foods though. 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. I really didn't think it would be this hard. I had a student with celiac and she was not like this. Once she accidentally ate non-gluten pizza and said she just got a bit of a tummy ache. I suppose at least this way we know she is getting hidden gluten instead of being unaware.
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Posted 16 January 2013 - 04:47 PM

We have a family of super sensitive mom and three kids. We are much, much more sensitive to ambient gluten exposure than many/most celiacs. We have gluten reactions when a "celiac" should not (we have wheat allergy in addition to celiac). We had to scale back to whole, unprocessed foods prepared in our home (100% gluten free as much as humanly possible). I would pack all of her food when she is getting care by others. We have to make sure that no gluten flour is used in spaces that we occupy. All playdohs used in their spaces must be gluten free. When in a shared space hand washing and the use of packed from home utensils also help prevent inadvertent cross contamination.

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.
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.



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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.
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Posted 17 January 2013 - 07:00 AM

Before we jump to super sensitive perhaps we should look at the common sense, easier to fix things? Like eating somewhere besides home? I would send her food with her or not send her at all for a few months until her health improves.

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
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Posted 17 January 2013 - 07:52 AM

My 5 year old son is very sensitive to gluten. And it has taken me years to learn all the hidden sources of gluten. And I am still learning new stuff all the time. Never stop reading - research, experiences of others, and labels (they change frequently). Study the lists of unsafe foods. Know that your daughter may not be able to tolerate even gluten free oats and possibly corn! http://link.springer...1130-012-0274-4 My son doesn't do well with gluten-free oats. Cross contamination is a crazy big deal. Lots of grains can be cross contaminated at the farm. Is the rice sourced from a gluten free origin? Is it being prepared on gluten free surfaces and very clean pots? Stirred or served with a clean metal spoon, or possibly a wooden or plastic spoon that has embedded gluten? Food needs to be served on glass or metal, or dedicated plastic. Is flour being used to cook with in the kitchen at day care? It can remain suspended in the air for hours and could settle anywhere. Make sure your child understands the importance of washing hands -- with gluten-free soap -- before eating or putting fingers in the mouth. You need to be vigilant from FARM TO PLATE. It is so frustrating, I agree. Why can't we just stop somewhere and grab our kid a quick bite to eat? Smoothies can have all sorts of additives that could be derived from wheat or barley or rye. Natural flavors can easily contain barley extract. Get used to the idea of calling companies to find out what is in their "natural flavors." Good luck with the never ending battle.

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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