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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? ::
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{ 14 comments… read them below or add one }
Well said Devan!
Until I read this article, I thought it was OK that some people considered it a fad or whatever because it was getting media attention which could bring about more gluten free foods to the market.
More gluten free products could mean more competition which could mean lower prices, more availability, more choices.
Now, you have made me realize that even though all the things I just said are valid points, some kinds of media attention are harmful.
Thank you for helping me see this side of the issue (which has so very many sides)
As always, I enjoyed reading your article.
Take care of you,
Aunt Jayne
I never really thought it was a fad
But that's because my old boss used to be terrible if she accidentally got any gluten 
But, it is pretty tough to make good gluten-free food when you're not gluten free (although I made an amazing gluten free chocolate cake once! It was better than any gluten-filled chocolate cake I ever had, haha, but it also had like 12 tons of butter in it…so that's probably why!) Glad you're spreading the word though!
Kudos to you! As someone living with diabetes I hear crazy things all over the TV and internet too. The latest thing? I've seen AT LEAST two crime dramas where someone with diabetes was murdered by the killer putting poison in an insulin pump. The ignorance bothers me. And its hard because people don't want to ask questions because they're afraid of embarrassing you – and then simply continue to believe the garbage they get from the media! Keep up the good work!
Thank you! This information is so important!
this is very interesting as I am just a curious bystander!
I hope at BlogHer they could prepare you something off the buffet…
Thanks for all of this information! I definitely learned something.
Just found you through the blogroll on Canadian mom Blogger, and I am now a follower!
Kate @ This Mom Loves
I couldn't agree with you more! You really explained this so well for people who just don't get it.
I think the media needs to rethink who they are talking to. Talk to the experts in the gulten free community, and to people who actually HAVE the disease. Not some random dietitian who has no experience with patients that have CD. I've spoke to some dietitians in the past and most of them have told me that celiac is briefly covered in the coursework, because "it's so rare".
I've had celiac for over 10 years and within the past couple of years there has been a 500% increase in products. I have to say the Atkin's craze really did open up a lot of choices (people actually understood when I would order a burger without the bun) and now it feels like everyone is once again jumping on that bandwagon.
My mother has Celiac, but didn't find out until about 10 years ago. She lived, as a sick woman, for 50 years prior to figuring out what was making her so sick.
Therefore, some of her symptoms are the most severe out there because so much damage was done to her body.
So I completely agree with your passion for not making Celiac disease and gluten-free foods a 'fad' if people don't realize the seriousness.
Thanks for sharing.
-Elizabeth @ Permanently At lunch
We have a little boy at our nursery who is allergic to gluten, peanuts (i think), milk, and can't tolerate a lot of soy (he can handle some, b/c his parents send him soy yogurt). We all have to be very careful with him at lunch times and on our cooking days (he's only 2 and can't really understand that he can't eat certain things. The problem is, his parents are not very forthcoming with the information and literature we need, to see exactly what he's allergic to and what exactly we need to do. It's quite frustrating, but we do take it seriously and we try our best. To be truthful, I never really thought of gluten-free as more than just a fad, or for the (what i term them) nazi-vegan. Really, no offense to any vegans out there! I have a friend who's gone raw vegan and she's completely awesome! I'm more talking about those who will likely want to draw & quarter me for enjoying beef or something.
Anyway, I'm very glad that you laid out exactly what celiac disease is and the importance of choosing things that don't contain the cross-contamination.
Would you happen to have any snack/food ideas that we could use for our cooking days? We help the children make the snacks (they're between 15 months and 5 years old, so stove/microwave free) so it's a bit mind-bending trying to make something creative but safe to include our food-sensitive student.
Wow, I truly had no idea that celiac disease could be so fierce! I feel for you. If one crumb or cross contamination can cause you months of sickness… holy crap, that is a lot to worry about! My sister in law has recently been diagnosed (3yrs. ago) with celiac, but I didn't know it could be like you shared. Are there varying degrees of the disease?
I will certainly share your blog with her. I hope she does come and read what you have to offer because I think it is priceless information! Thank you for putting it out there.
I couldn't have said it better. I have extended family who don't understand that this is PERMANENT and YES one bread crumb WILL hurt me.
My mom,dad & sisters all completely understand and this house is strictly gluten-free.
Keep up the great work. xo
Diana
Thank you so much for all of this information! My son (2 yrs old) was just diagnosed with Celiac disease, via an endoscopy and several tissue biopsies, this week. I have been researching like mad to learn how to cook and shop in order to keep him safe and healthy. I learned many valuable things by reading this post and look forward to exploring your blog more thoroughly in the weeks to come! I listed our family blog above, but I also am just beginning my food blog
http://cookingforCorban.blogspot.com
Ironically, the only post I have so far is our first “successful” gluten free breakfast, which, I just learned by reading this post, may not have been safe after all.
Thank you thank you thank you!
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When people dont take me seriously, I say that one crumb could cause me to have a seizure. While this isnt exactly true, (but still a possibility with thr amount of nerve damage I have from what I call “Gluten Poisoning”), it makes the person be more aware of the food they have made for me to eat. This article is very awakening to the minds of those who dont understand. But I hate to call what I have Celiac Disease, since it is not exactly a disease. SO I call it Gluten Poisoning; the name seems to fit much better.
You are absolutely right that the media belittles the condition – to the point where eating out is like playing russian roulette – but you are wrong that coeliac disease and gluten intolerance are different things – the medical community diagnoses them differently but the science simply does not back this up – in fact the biopsy itself is spurious and not done in civilised countries as it is merely a symptom of the overlying disorder. The only reason for doing a biopsy is if the blood test is negative ( it isn’t actually very good as a screening test – truth be told I predict in the future we’ll be looking for antigliadin.) Perhaps instead it would be better to encourage the gluten intolerants (or undiagnosed coeliacs) to use the proper terminology “low gluten” vs “gluten free” to describe exactly how seriously they take their diets because I imagine it’s annoying going to the all the trouble of making truly gluten free food when someone is at best on a low gluten diet.
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