Accustomed Chaos™: How The Media is Making Things Worse For People With Celiac Disease

As you know I have Celiac Disease and was diagnosed 3.5 years ago after a long myriad of complications. I have been gluten free since and have not looked back. When I was first diagnosed and was weeding through information about celiac disease and the gluten free diet - in all honesty not many people knew what I was talking about. Now almost 4 years later I have a strong knowledge base on how to purchase and prepare safe food for myself and my family. For that I am thankful - however I wish other people (ESPECIALLY the media and the food service industry) knew what they were talking about.

I am all for raising awareness of Celiac Disease - the more known the easier it will be for others to get their proper diagnosis, quicker and the more safe options will be available for individuals and families with celiac disease. What I see happening in mainstream media recently is a lot of dangerous misinformation and belittling of the seriousness of this disease.

First started with an article posted on Reader's Digest website titled "New Ways To Just Say No To Desert" written by Meaghan Cameron. The last paragraph of the article was very disturbing to me:

What’s a diet devotee to do when breath mints, gum, polite refusal, cleaning products and excessive condiments fail? Echlin hints at this at the end of her column when she says that the best desserts should be eaten. Why attend a dinner party if you don’t plan on eating what’s served? That said, "a host will understand if the dieter has just had triple bypass surgery or is suffering from gestational diabetes." The final way fervent dieters haven't tried is a simple way to shut people up: Chalk it up to an allergy or condition. Gluten intolerance, Celiac disease, allergies, lactose intolerance and diabetes will get you out of eating just about any dessert.

The article has since been removed from Reader's Digest website after the reaction it received from the gluten free and celiac disease community. The average person might not see anything wrong with it - just being funny, but here is why it is DANGEROUS:

Telling people to pretend they have celiac disease to avoid having to eat a slice of pie belittles the seriousness of this disease for the rest of us. Imagine if everyone did that - how people would then start to roll their eyes at the idea of celiac disease and fluff off the need to eat gluten free. If I went to a restaurant and asked for a salad with no croutons because I had celiac disease - the server could just assume I was on a low carb diet and just pick off the croutons. That would leave me sick for months.

There has been a lot more coverage of gluten free diet recently because a famous former USA Presidents daughter has requested her wedding cake be gluten free. This has brought some good coverage because it is showing that gluten free doesn't mean ugly or bad tasting food. It has also brought a lot of coverage about gluten free diet being the new celebrity diet 'fad'. Yes this brings on a new slew of gluten free products but the problem is these products are not being produced in a dedicated facility. People on the diet to 'lose weight' don't have to worry about the cross contamination issues and that is a large issue in food safety for people with celiac disease.

One of the HUGEST issues I had with this clip is they say that gluten intolerance and celiac disease are the same thing. NOT TRUE. I am a language lady - all about choosing the right language and the media constantly saying the intolerance to gluten is the same as celiac disease is dangerous misinformation.

Gluten Intolerance: A reaction to the gluten that does not allow your body to digest the protein ( IgA, maybe IgG antibodies)

Celiac Disease: A reaction where your body may still digest the protein (& release IgA, IgG) but also produces IgE antibodies which travel through your whole body and create autoimmune responses outside the gut.

That is all medical mumbo but if you even look at the terms in context to the average person the difference is still known. If you were to hear someone say they had a lactose intolerance (inability to digest lactose) the picture that comes to mind is gas and diarrhea when they have some dairy. They are typically fine the next day so they often indulge once in a while & deal with the uncomfort for a night. When someone tells you they have a peanut allergy it is taken far more serious then the milk intolerance. You watch for cross contamination and the average person knows the seriousness of this allergy. Same thing with celiac disease vs gluten intolerance. Language is very strong.

Why is all this so important?

This gluten free diet is something I have to live on forever. No cheating, no wavering, forever. I do not want this disease to cause more damage to my body then it has already and I do not want it to escalate into cancer - a very real possibility for someone with celiac disease.

Where public awareness really comes into play is in for people hosting a food service for someone with celiac disease or even the food service industry itself. If they have no idea how to safely prepare food for people on the gluten free diet it limits our choices so much.

Example. When I went to BlogHer a few weeks ago the ticket provides food for all attendees. When I won the ticket I contacted the people at BlogHer to make aware that i need a special meal plan due to celiac disease and was told that their events planner would have options available for people with celiac disease. I double checked again before I left to make sure I would be able to eat safe food & was ensured again.

So you know my shock when I walked in and saw the entire thing was buffet... which is NOT safe for any person with celiac disease. If the industry was actually aware of CORRECT and SAFE information they would have known this is not safe. Even if there was a plain lettuce salad on the table - it was right next to a basket of buns & who can ensure that no one picked up a bun before they touched the prongs to pick up the lettuce & gluten ridden crumbs didn't fall into the salad?! Yes people, one bread crumb will destroy my body - for months or forever (studies are showing neruo symptoms caused by celiac disease are not reversible).

Celiac disease is serious - it is not a fad - it is not the 'in thing' to have. I know if you are not living with celiac disease you will not really understand my passion behind all this - but think for a moment if you had a medical condition that was constantly undermined. These 'experts' spreading dangerous misinformation causing a lot of dangerous food for people with celiac disease. It creates a very dangerous environment for us and limits our options even further (safe dining out options).

:: I would love to hear your comments on this - what do you think? ::