It is my personal belief that good nutrition is the key to everything. The key to health, happiness, longevity, and a good life. The fact that it is BARELY taught in medical school is a joke on the entire human race. So it does not surprise me that the medical establishment would over look a disease like celiac disease. Ask yourself, before your diagnosis, when was the last time you were in the doctor's office and they asked you what you eat? When was the last time they inquired about your nutrition? It's reprehensible. So, yes, I'm angry. But I channel it into positivity. I use that anger to spread the word about celiac disease and help people get better informed. I can tell you this - every single person I know, and every single person that I have any internet contact with knows about celiac disease! I make sure of it. Facebook is a wonderful way to help educate others.
It's good your friend is taking it seriously. If you think she's afraid to invite you over, why don't you talk with her about it? Reassure her that you appreciate her concern for your health, and that you are comfortable visiting as long as you take the steps you need to take to be safe. For us the basics are washing hands and eating only the food we bring (usually with our own dishes, too). Maybe she just needs to know that *you* are comfortable, and that you feel safe with her, especially given her awareness.
I did talk to her about it and it went really well. I think she was scared to death because when my son was first diagnosed I was scared to death. I was freaked out (because he had been SO sick) and I was terrified that every little thing was going to make him sick again. Couple that with the use of a "scary" word and she got spooked. I totally understand why it happened and I'm incredibly grateful that she cares so much about us.
I agree with the others who say this needs to be reported. You should also inundate them with material on celiac disease and insist they read it. How dare they do what they did to your poor child! Would they give a child with a peanut allergy just a little bit to get her over it? Why would they assume that they know better than you? That is maddening! They need to be reported. They're going to kill someone with attitudes like that.
To my knowledge I have only been glutened glutenated or contaminated once in these past six months but I do not know (and I do not intend to deliberately find out). I do not think "contaminated" is too harsh - it may be the jolt some folks need! It is like poison to our bodies, after all. Probably a bit better than walking around wearing a poison or biohazard symbol t-shirt!
My youngest is super sensitive so there has been a lot of trial and error with him. He has been contaminated quite a few times in the last year I am sad to say. Twice really horribly, and the rest were "light" contaminations but made him sick none the less. We have found that he cannot eat anything made on shared equipment with wheat and that took a long time to figure out. "But it says gluten free!" he would cry. Now that we know how sensitive he really is he gets contaminated a lot less. And sometimes I do feel like putting a T-shirt with a big poison symbol on him!
We also tip really well, and regularly call corporate offices to tell them how wonderfully we were treated. I think doing both things really help encourage restaurants to keep gluten-free items on the menu and adhere to their cc practices. We are excellent repeat customers when everything goes right!
Okay, so my blood work came back negative for celiac, and because I respond so well to the gluten-free diet, my GI dr wants to diagnose me as gluten sensitive (just like he wanted to diagnose me with IBS before I requested the test ). I'm still firmly convinced that the test result is false because...
1. I had to request it myself so I have little faith in how often my dr. or his lab sees the test to have the experience to run it correctly.
2. My grandmother was positively diagnosed with celiac.
3. All my symptoms fit and are being relieved by a gluten-free diet.
So my question is, because I'm officially diagnosed gluten intolerant, do others (i.e. restaurants, family, friends) in general respond more seriously if you tell them your gluten intolerant, or that you have celiac disease?
I think either way you're fine. Gluten intolerance is very serious. I think people tend to hear the word "disease" and take it more seriously, but gluten intolerance is serious as well. My first test results came back negative, but my son has celiac disease. I have been referring to myself as "gluten intolerant" while explaining to people that my son has celiac disease. I'm actually testing again because I find it hard to believe that he has celiac disease, and I don't. I guess I don't fully understand how genetics come into play with celiac disease and gluten intolerance yet. Have you read "Cereal Killers"? In that book the authors talk about "The Gluten Syndrome" and hope to change the name of ALL gluten related problems to this one umbrella category. I think that's a really good idea.
FANTASTIC articles! I am passing these on to everyone I know. Good grief my friends are soooo sick of my Facebook updates about celiac disease, but I dont' care! These are just too good not to share. Thanks for posting them!