How the mighty have fallen.
Flashback: I was diagnosed with celiac disease in (…trying to remember the exact date/month…) September of 2007. I was sick as a dog. I was confused. I was angry. And I was lost.
No…I wasn’t lost in the flood.
No…I wasn’t lost in space.
And no…I was not lost in the supermarket.
Well actually that’s not true. But let’s move on.
I was lost and besides the amazing Mrs. Dude, I had no one to turn to; to commiserate with; to connect with; to learn from. So I did what most newly diagnosed celiac did. Sat in the corner with a bottle of tequila and cried myself to sleep. Oh wait a minute…that was last night. I went online, found celiac.com, hit the forum, told my story and started connecting with my fellow celiacs.
And while I didn’t love the “big brother watching you” aspect of the site, where every comment was moderated and even deleted if there was a whiff of self-promotion or whatever else they deemed not acceptable, it still gave me comfort. I didn’t speak up very often on the site, but I would check in to get some of my questions or concerns answered.
Then I started my blog, found my own peeps, and realized that a lot of the info on the celiac.com forums was questionable at best and dangerous at worst. Not just on the forum, but from celiac.com itself. They’re firmly behind Cheerios and think the community is wrong to question them. They have sponsored blog posts from questionable products. Their website is like being in Times Square with all of the flashing ads. So needless to say, I have stopped visiting the site, but they still show up on my Twitter feed, since I follow the keyword “celiac”.
And what came up the other day? This gem: “Justin Bieber Ditches Corona Beer for Omission in Response to Gluten Intolerance”
The article reads like it came from a fanboy. It talks about his new marriage, a minor car accident, and how is looking for a new home more suitable to a married man.
What doesn’t it talk about? The fact that Omission beer is not safe for those with celiac disease. The fact that it is gluten-removed and not, as it’s called in the article, gluten-free. Imagine being newly diagnosed, coming across this article and celebrating the fact you can safely drink Omission beer. How can the folks at celiac.com live with that? My guess is 100% guilt-free.
You know what celiac.com’s tagline is? Celiac disease and gluten-free lifestyle news and support since 1995.
Perhaps they should change their domain to glutenfreelifestyle.com. Cause that’s a hell of a lot different than living with celiac disease.
By being one of the first to get online, celiac.com has power. And a big audience. But with power comes responsibility. Something I believe they have lost sight of. Perhaps it’s not too late to get it back.
The community deserves it.
Oh…and by the way celiac.com…1997 called. They love the design of your website.
I couldn’t agree with you more about celiac.com. I’ve been subscribed to their weekly newsletter since 2003 when my teenage daughter was diagnosed. It used to be SO helpful. Now, it’s almost laughable. Definitely not science-based anymore, and the ads are disruptive and misleading. Tons of bad “information” that could lead a true celiac down a dangerous path. I like your suggestion for a name change to glutenfreelifestyle.com. It fits. And perhaps they could hire Gwyneth Paltrow to be their celebrity editor.
Looks like we’ve both had a “conscious uncoupling” from the website. Good riddance.
Totally agree with you, Dude. And didn’t they also get behind (and perhaps sponsor) one of the pizzas that really was not gluten-free? Sorry, I cannot remember which one. And for those of you who are newly diagnosed recently, please find your local support group for one-on-one personal, I-have-been-there help! I run such a group and keep it going — when no one else will — just for this purpose! The internet isn’t the end all and the be all — except for THE DUDE!
My name is Gluten Dude and I support this message.
My daughter is almost 10 and we found out almost a year ago she has celiac disease. Wow! It’s almost been a year and I still feel like it was yesterday. Even in terms with what I know, I learn something new EVERY day!! Thank you for this article!! Navigating the food world with celiac is hard enough. Then throw in some websites that aren’t….giving true and honest support and information is beyond frustrating! I honestly had no idea. Your articles are such a wealth of honest information for not only those that aren’t new to this, but to those who are so very brand new. Thank you!!
It is a landmine of bad info out there.
Agree, and yes, that was the first place I went to in 2008?
So, glad I figured it all out with the help of others and you being a big one.
I agree, Used to follow celiac.com and print some of their “news” in our newsletter. About 4-5 years ago, we began to
realize much of what they print is misleading or downright not true. These days I read it but no longer print anything preferring you – Dude – to many other sites. As a retiring branch manager of a support group I know the value of face- t-face meetings. Online support is ok- up to a point- and not always correct either. I also recommend two well-known national organizations for accurate information especially for newbies. One is gluten.org/getting started and the other is NAC- the National Celiac Association. Both have lots of information- just download and read! I was diagnosed with NCGS in 2004 and there was NOTHING!
Related to the National Celiac Association: I was reading labels today at the grocery store (good times) and trying to see if a product was truly gluten free. It had a ‘mark of trust’ from the National Celiac Association, which I have seen before, but this product actually had a definition of what their ‘mark of trust’ meant on a side panel of the package, and what I read freaked me out. It said (in more technical language) that the product must have met one of two criteria: 1) be made of gluten free ingredients or 2) be treated in some way that all gluten has been removed from the final product. Ummm…that’s a pretty big ‘or’! Has anyone else ever seen this sort of statement on a food item? I knew to avoid gluten-removed beer, but gluten-removed food is a new one for me. Without that endorsement definition I would likely have bought the item. But since the endorsement applies to both safe and sketchy items, and it doesn’t differentiate which is which, I put the item back and will contacted the company to ask which category they fall into. I felt disappointed but not surprised that the association would vouch for gluten-removed products.
I was so overwhelmed and lost, when originally diagnosed in 2009. I went the library and checked out a book, I think, it was by a Dr. Green; at the time, about the only or only book with solid information regarding the disease, which led me to Celiac.com. I found a way out of the darkness and into the light via the forums, which were filled with solid information. I can, no longer (haven’t for a few years) trust them with the cold, hard facts. The truth: Celiac Disease = NO Gluten EVER! Either, adhere or suffer the consequences!
Like you, I turned to celiac.com when I was first diagnosed. Instead of finding knowledge on the subject, I was basically fear mongered into believing everything was going to make me sick. I thought it was correct because I still had other food intolerances and I was still feeling sick, everyday! I felt like my strawberries were making me sick and my rice was contaminated and that’s why I felt like garbage. Oh and those crazy benches tried to tell me that I had to stop drinking coffee! I also thought that I must have ‘sensitive’ celiac because even certified GF products made me feel like crap. It turns out that I just needed to get back to basics and forget about the ‘gluten free’ products for 90% of my meals. I was so caught up in trying all the gluten free things that I forgot that I feel my best when I eat a whole food diet of meats, veggies, fruits and some dairy. I did some of my own eliminations and discovered that im intolerant to eggs and that was the main reason that I was GF but still feeling like trash. That site is idiotic and I would never suggest it to a newly diagnosed Celiac. They need to give up the domain!
Thank you for always advocating for celiacs and for outing those who muddy the waters, Dude. As a Canadian celiac, I just want to be sure that your readers know not to be confused by the similar web addresses; celiac.ca is the addy for Canadian Celiac Association and the information offered on their site is reliable. In fact, their advocacy resulted in General Mills having to remove the GF claim on Cheerios in Canada.
Yes. Thanks for clarifying Cari.
I agree. I used to use celiac.com a lot as a resource. Then I noticed there was a lot of controversial information on their website. I would speak up only to be chastised and belittled. If I defended my post to position with facts, I would have folks outright get vicious with me. They weren’t interested in correct information. They were interested in what suited their view point and justified what they were eating/drinking. I was actually called ignorant and disrespectful. Because the offender was popular on the site. I deleted their page and have never looked back.
The owner of the website blocked me and said I was self-promoting because I talked about my experience living with celiac since being a child. They are extremely nasty on that site. I am sorry they were vicious with you too.
Celiac.com is alive and healthy and heading into our 25th year of helping celiacs. One reason we’ve lasted this long is by avoiding negativity, and focusing our attention towards our mission of helping people get diagnosed and treated.
Whether or not you liked our Justin Beiber article, he’s still a very important influence with over 75,000,000 followers, so his newfound gluten sensitivity is definitely news to our community, and will likely lead to many others figuring out that they too have an issue with gluten.
Try to stay positive Gluten Dude!
@Erin we did not block you, your account is open and you’re free to participate in our forum:
(It looks like our moderators did have to warn you about using posts in our forum for self promotion of your site and app, but you and everyone else are welcome there.)
Hey Scott. Thanks for chiming in. I assure you it is nothing personal. But if you read the comments here and on my FB page, you’ll see that I am hardly alone in my thoughts. Just some food for thought for you. And calling out people/companies is not being negative. Everything I do is for the community. You might not like it…and you aren’t alone, believe me…but it’s who I am.
P.S The Celiac Disease Foundation, and their medical advisory board, which includes the world’s leading celiac disease experts, indicate that Cheerios are gluten-free, and safe for celiacs. Celiac.com agrees with this position.
https://celiac.org/about-the-foundation/leaders-advisors-and-staff/medical-advisory-board/
The CDF is paid a sh*t ton of money to have their logo on every box of Cheerios. They were promoting GF Cheerios BEFORE they were released and when no one knew if they would be safe or not. There was a major Cheerios recall because of, wait for it…gluten, and GM still denied any culpability and CDF’s response was “oh well”. I can keep going on, but you get the picture.
Their advisory board isn’t being paid by General Mills, and neither am I. The recall you mentioned was 1) voluntary; and 2) caused by an ingredient mishap at one of their plants. It hasn’t happened since, and there has been zero evidence produced by anyone that their current products are not gluten-free and safe for celiacs as they claim…only speculation. If they were not gluten-free then why haven’t the class action lawyers lined up to sue them? Surely they are a big target with deep pockets. According to the conspiracy theories all one would need to do is buy a few dozen boxes and test them, which would be a very low investment for any law firm. GM’s newest patented process removes gluten to below 10ppm. Rather than attack them you may instead want to thank them for spending millions of dollars to develop this technology which clearly works–they sell millions of boxes of affordable gluten-free cereal a week.
Conspiracy theory? Sigh. And stop with the “voluntary” recall, like that is some badge of honor. They f***ed up big time, putting a lot of celiacs’ health in jeopardy. They had to do a recall or their new GF Cheerios were dead in the water.
I never said the advisory board was getting paid by GM. I assumed they were all voluntary.
You’ve got your reasons to support them. I’ve got mine to not support them. Please read the following posts:
Read this: https://glutendude.com/media/why-are-we-celebrating-gluten-free-cheerios/
And this: https://glutendude.com/not-gluten-free/the-gluten-free-cheerios-recall/
And this: https://glutendude.com/not-gluten-free/gluten-free-cheerios-not-recommended-by-the-cca/
Hey GDude,
Lawyer Hap here — long time no talk. Glad you, Mrs. Dude & the Dudettes are each well & happy.
Interesting thread here with Scott the Celiac.com Man. I left that website years ago & I’d choose to starve to death before I’d eat Cheerios. Good if GM can help others but doesn’t include me since those 10ppm still make me extremely sick — I’m finally cancer free after formerly eating gluten & I choose to stay that way — fresh lean meat, fish, very specific nuts, healthy fresh veggies & fresh fruit are my only meds & sustenance.
I’m still most grateful for Jen & you significantly contributing to saving my Life. I’m getting really healthy again FINALLY — just got back from Oregon where I walked 52 miles in 7 days (right before I got so sick, I walked 85 miles in 6 1/2 days in 2010) so I’m gaining on my former self almost 10 years later. I still celebrate my “GF as I knew how back then” date every year: November 18, 2012, which I’ll never forget as long as I live.
Keep up the fight & Hold the Fort Dude !!!
Hap
Iirc they used to be the Celiac Sprue Association and had a mention on .gov sites back then. Not sure how it fell to such a depth. They spout the nonsense about enzymes too. Unreal. Meanwhile, google and friends is cracking down on keto sites.