Need Advice - Cross Contamination

[LaceyGirl]

Hello I am new to this forum - just a little background - our beautiful 2 year old daughter was diagnosed with DiGeorge Syndrome late last year - then diagnosed with Celiac earlier this year. She has been on a Gluten Free diet since February. It was a 180 when we changed her diet - she went from not walking/talking/no hair/underweight/etc to walking/talking/gaining weight/hair/etc within the first 30 days. We have been so amazed by the transformation.

We just had blood work done a few weeks ago and received a call that the Celiac numbers were still high (I know that this is not the correct term but do not have my notes with me). They went from 130 back earlier this year to 133. Bottom line the doctor said that our daughter is still getting Gluten in her diet somehow - more than likely cross contamination. We have changed alot in our house - separate dishes, pots, pans, silverware, etc - daycare has also done the same. Checked soap, finger-paints, play dough, etc. We make sure we wash our hands constantly. Have any of you experience this - can you please give me some advice. I feel like we are failing our daughter but don

[tarnalberry]

If you haven't taken your whole house gluten free, that would be my first step.

[dilettantesteph]

Another step would be to avoid items made in shared facilities and shared lines.

If those steps don't work then you could try a whole foods diet.

I think that it can take some time for the numbers to go down. Be happy that she is so much more healthy.

[tarnalberry]

If those steps don't work then you could try a whole foods diet.

I would definitely do this. Processed foods are going to be a risk for contamination. Perhaps small (and for many of us, negligible) risk, but worth doing to really take as much risk out of the equation as possible, particularly for now.

[scarlett77]

Also check lotions, soaps, etc for her AND the rest of the family. Check YOUR makeup and hair care products (particularly any sprays). For example if your lipstick isn't gluten-free and she's giving you kisses, she will likely ingest some. Kids are notorious for putting things in their mouths (especially their own hands) so anything the touch has a chance of being ingested. Anything that can be inhaled or dropped in the eyes also has a chance of being ingested so that is why you need to worry about things like hairspray also.

I agree a gluten-free household is easier.

[SGWhiskers]

Little kids are on the floor and put things and hands in their mouths constantly. I worked with a family who coincidentally had a toddler with celiac and I watched mom give all the great gluten free foods, but did the common thing parents do and pick up the dropped food or pacifier, brush it off and hand it back to the little one. I know that earlier in the day or the day before, that same carpet (along with the floors at home)collected the crumbs of another child's crackers. This isn't safe for celiac little ones. I say whole house gluten free until she can understand how to keep items and her hands out of her mouth (5 years?).

At therapy and play dates, she will need a clean blanket spread in her work area. Therapists and teachers will need to be taught to avoid items with Vitamin E and Wheat Germ oil on days they have hands on contact with her. Play surfaces at school/therapy will need major cleaning. I watched a granola bar get stored for 2 minutes in a toy one day and then dispite my best cleaning, the little celiac toddler was playing in the same toy the next day. She stored her cereal in it for a minute or two. I told mom not to let her eat them, and we took them back, but things that look like they would be safe outside of the house often are not. Remind people that work with your daughter that Purell kills germs which is important, but does not get rid of the sandwich they just ate.

Now, I suspect that while she may get some gluten outside the house, she is probably getting most of it in the house from the same type of activities with siblings or from crumbs that fall to the floor.

[T.H.]

A few other ideas, based on recommendations from my own GI when I was having trouble.

- has she been tested for any food allergies? If she has mild ones, it might be inhibiting her gut's ability to heal.

- Is she eating dairy? that can also inhibit her ability to heal.

- Is she eating any quinoa or gluten-free oats? A small percentage of celiacs seem to react to one or both of these grains just like they would to wheat, rye, and barley. It might be worth while to cut them out of her diet for a while and see if that helps.

- I'd second making your house gluten free. We ended up having to go that route. I and my daughter were too sensitive to tolerate even the miniscule amounts that we couldn't keep from contaminating things enough to affect us. (Have you tested yourselves for celiac disease, by the way? 1 in 22 people who are that closely related to a celiac also have the disease. We tested my family because of that and had family members with no symptoms who came back positive.)

- I'd also second the 'only whole foods' approach. I was so sensitive to gluten that I was reacting to the small amounts of gluten still present in most gluten free foods. Whole nuts that were processed in facilities with wheat (that warning on the label is optional, so you can't be sure this is an issue unless you call up the company), oils that were processed on the same line as wheat germ oil, gluten-free flours that were contaminated with small amounts of gluten - they all made me a little sick until I got rid of them. Foods that are made in gluten free facilities have been a godsend.

- Do you have any construction at home or at the daycare? Dry wall dust and other construction materials often have gluten in them and if it's inhaled, it'll get in the throat and down into the stomach too, so can gluten your little one.

- the daycare may be one of the more difficult areas. If she kisses any of the other children, they touch her hands and she puts her hands in her mouth - it can all be an issue.

On the plus side, something that might help you find the source of gluten? You can google gluten free home test kits - they can be special ordered and you can test any of your foods or products for gluten content. That might help if you have some foods you aren't sure of.