I'm frustrated. Hence the title. Isabella had a six months post diagnosis of celiac disease check up and she has gained weight and is feeling healthier, she isn't anemic anymore, but she's still getting unacceptable levels of gluten. So what do I do? Should I only buy whole foods and products from gluten free companies? I thought I was getting things down. I read labels but there is so much cross contamination that can be done in a food manufacturing plant. She wants to go to girls camp and youth conference for church this summer and I intend to let her go, but how much of a pain is this going to be? How risky is it going to be?
The other day we ate lunch at the only exclusively gluten free establishment I know of, Eleanor's Bakery. It was good, albeit expensive. We had these sandwiches on this cornmeal bread called arepas. We also had chips: Cheetos for Isabella and Doritos for me and Brent. These chips do not have gluten in them (I am becoming increasingly wary of food additives like MSG, however. Not because they contain gluten but because I think we should get away from artificial ingredients. We have a long way to go though.) These chips have also recently been changed on the Frito Lay website. They are produced in facilities that produce other products that contain gluten (like Sun Chips). They aren't on the much smaller list of products that have been tested to have less than 20 part per million (the acceptable level of gluten). I buy quite a few products that say gluten free on the label or have no gluten in the ingredients but also say they are produced in a facility that makes wheat containing ingredients or just says "may contain wheat". Like Heartland Gluten Free Pasta or Reese's Puffs cereal. I do that because it makes life easier and Isabella can have more options. But I guess I can't do that anymore. I realize I sound very whiny here. But this is my blog and I need to complain about how this is a pain in the butt once in a while. Especially when I have confirmation that while we are making progress, it's not good enough.
7 comments:
I feel frustrated just reading your post! It must be a LOT of work trying to figure this out, not to mention expensive.
At least you know you're making progress.
Good luck Cindy!
I felt so bad when Brent told me of your visit to the doctor. I know of no one who has been as diligent as you in researching, studying, and preparing gluten-free food for Isabella. So frustrating that those who prepare and label foods as "gluten-free" are not as diligent!
Whiny you are not - you should be allowed to vent after trying so hard. Not all bad news though - weight gain and feeling good are real pluses.
Hey Cindy-
Sorry to hear about your frustration. My daughter was recently diagnosed with multiple food allergies so I feel your pain. In my own research, I have read about gluten being in shampoos, lotions, soaps,etc.. Maybe this would be worth looking into? Just a thought. Good luck with everything!
Diana
Thanks, Diana! I know, it can be hidden anywhere. I'm sorry about your daughter. What kind of food allergies does she have?
Wheat, soy , nuts, sesame, potatos, and various fruits and some veggies. It has made feeding her really, really difficult. I, too, am having to learn how to cook in a whole new way and am experimenting with different flours and such. I really do feel your pain! :0)
Have you found any websites with good recipes that you like?
Diana
I meant potatoes. Sorry, I hate it when I misspell things :0)
Diana,
I tried to leave a comment for you the other day and blogger erased my comment. Then I was too annoyed to try to retype it. :P I hate when it screws up! I'm so sorry about your daughter! I have such sympathy for people with multiple allergies. There are so many great resources on the internet. I would be much more lost without it.
Gluten Free mom is good: http://glutenfreemom.typepad.com/gluten_free_mom/ Her site is nice because she calls and writes all these companies to find out if their products have gluten and puts a lot of her findings on her blog.
Gluten Free Goddess is pretty good because she often deals with recipes for multiple allergies.
allergicliving.com seems to have a lot of good info on their site (and they put out a magazine too). I haven't looked around there tons but it looks pretty good.
Have you shopped on Amazon? They have a ton of gluten free/other allergen free products in their grocery section. They sell a lot of it in bulk so it's slightly cheaper and you can get free shipping often, I don't know if that works abroad though.
http://glutenfreegirl.com/ Gluten free Girl and The Chef has a lot of recipes for multiple allergies too.
I've found a lot of good groups on facebook too. They often post recipes and tips and direct you towards other sights. The blogs and facebook groups are just nice for support. It's good to see you aren't alone. So is it your older or younger daughter with the allergies? If you ever want to message me on fb and ask questions or just commiserate feel free. I hope this helps you a little, good luck!
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