Hi Virgie! I understand your frustration completely! Has your son been evaluated for gluten problems, too? His could be caused from the gluten as well and would improve greatly on this diet.

As for eating out, if you could tell me the names of any national chains you have, like McDonald's, Burger King, etc., I can send you the links to their website that show the gluten free items they have. Some places have quite a bit more to eat than you would expect! Also, I have used and taken with me soft corn tortillas or the flat crunchy corn tortillas (tosatadas) to use in place of bread. You can put all kinds of meat and stuff on them - doesn't have to be mexican. It's cheap and works in a pinch. I even make pizzas out of the cruchy ones!
Or just order the burger or sandwich stuff without the bread and eat with a fork.

For contamination issues, just explain what her needs are. Most places really are nice about it and would be willing to help her eat and not get sick! You just have to be brave enough to explain and ask lots of questions and send back items not prepared correctly. You're the one paying for their food!

Also, google gluten free foods and you'll find lots of goodies you can order online. The gluten free mall is a good one, too. They have lots of stuff to order - even GF ice cream cones! www.glutenfreemall.com.

As for the grocery store - Cocoa pebbles, Fruity Pebbles, and Bam Bam Berry Pebbles are GF as is Kix! Get some Jet Puff Marshmellows and make some cereal squares with those! Heavenly! Popcorn definitely is and nuts and fruit and of course chocolate! The all natural Cheetos are GF and all the plain potato and corn chips and most all salsas. Also check out frozen taquitos with corn tortillas - there are some at my store that are GF. There are even a few Progresso soups and Herb Ox buillion and rice noodles in the Asain section (sometimes). Most yogurt is safe, cheeses, most lunch meats - Oscar Meyer for sure. Some puddings are also safe and jello. If it says modified food starch, and it's made in the USA, it's always corn. Kraft foods will always list any wheat based ingredient as well, so if it doesn't say wheat, it's corn or potato starch. There's probably more than you realize at your store! And then there's ice cream . . . . ! Lots there also!

I have a gluten free teenage boy besides myself that is always hungry, too! Hang in there, it will get better!

Time will make all these changes more acceptable. I still frustrated and angry at time. It will all come to naturally as time goes by. I love Hersheys chocolate and when I get upset about not being able to eat something I grab a Hershey bar-I know its not healthy but it helps me emotionally at the time. Good luck and ask us any questions and someone will give you info. I am sure this is very hard for you to do for your child and very upsetting to see she can't eat like other children but her health and life is at stake. Hugs. It will get better.

I've had this for three years now and it's still hard. I used to cry when I first moved in with my boyfriend and we would go grocery shopping. I couldn't eat any of my favorit foods anymore. I was eating rice crispy bars thinking they were okay up until this weekend when I actually read all the ingredients (the box says contains milk and soy) but it has malt flavoring in it which doesn't contain wheat but does contain gluten (tricky huh?) That's what drives me nuts is I find things I think I can eat and then later learn OOPS I was not supposed to eat that. I've gotten better over the years, I pretty much know what I can and can't buy now, check out your town for a natural or health store, my hometown is also very small but has a healthfood store within 20 miles. they have a great selection of gf foods usually. My mom stocks up before I come home to visit. Good luck!

Have to say oops! on the Kix - it contains oat flour, and the contamination of oats and oat flour vary greatly. It is risky to eat oats not being able to get a guarantee the contamination is low enough. Oats have been declared safe from the gluten standpoint - oat protein is not harmful to Celiacs (see celiac.com for the research and declaration). The problem is that you should really buy only GF oats from GF sources like Bob's Red Mill.

And then there are those folks who will react to oats just like some are sensitive to corn, soy, or dairy.

Sorry for the Kix thing! Hope this helps!

This is a massive life change. There is a natural stage of grieving that occurs. I remember being very depressed several months after being diagnosed. My doctor did not understand because I was getting healthy and gaining weight.

It is hard to read every label. I am sorry but that is the truth of it. However, you will get better at reading as time passes. I was diagnosed 8 years ago and I can quickly read labels now. It makes my shopping trips longer but this is the cross I have to bear in order to be well.

Sorry, I re-read my reply and realize I missed the mark for your question. I started getting used to it after about two years. But it took a few more before the anger really went away.

Great job Jette, you always have new and good info. . Virgie60 have you tried to order products online? I think you may save time, gas money and aggravatopm if you cam find some things your daughter likes from these companies. Kinnickinick has great bread and Glutino has many good products, with the money you spend on gas maybe this would even be cheaper. Also, I am 47 years old, I was dx with Ulcerative Colitis when I was 29. Somewhere along the line, they downgraded this to microscopic colitis. About 15 months ago I was dx with CD (it was not my gasto doctor who found it, it was an oncologist who found it!). Anyway, to make a long story short, since being on this diet, I have had less and less problems with the colitis and am beginning to think it was the whole problem in the first place! Let us know if your son has had the test...Best Wished..Donna21

thanks for sharing your story. I think it will help others. I hope you get help for this too. Read Jette's post she covers everything I can think of.