I’m writing this post with a swirl of emotions (swirl? really Dude??). I’m gonna try to make it quick. Not sure how it’s gonna play out. I know I’ll get some hate (I mean…more hate) but here goes.
Oh…first let me say this is not about having advertising on your site or doing some affiliate marketing for products that are GOOD for the community. If you are HELPING the community and making some dinero on the side, more power to you.
Anyway…here goes.
I’m disheartened. I’m disappointed. I’m disillusioned.
Why? Because too many of the big voices in our community are selling out to the harm of the celiac community.
I was not going to say anything. I was going to just keep seething on the inside and doing my thing. But the more time went on, and the more examples of selling out I saw, and the more people that contacted me privately upset about it too, the more I decided I gotta let it out before I burst.
How are people selling out to detriment of our community? So glad you asked. Here are some recent examples. And mind you, these are not bad people. This is not a personal attack. At all. I just think they’re making really poor (and sometimes dangerous) decisions to line their pockets.
Case in point: The Celiac Disease Foundation, the self-described “nation’s public voice for celiac disease”, has their logo on every box of gluten-free Cheerios, even though people continue to get sick on them and General Mills’ testing methods are atrocious. GM is their biggest sponsor. The CDF was promoting them before the product even came out. Who does this help? Not the community. I talked about this recently here.
Case in point: Celiac.com. The site that I first went on when I was diagnosed and connected with my fellow celiacs; the site that is the starting point for many celiacs; the site that still has a large audience; the site that detests me. Yes…that site. How? Let me count the ways:
- Just look at THIS. Remember when I said having some ads is cool? This is not cool. First of all…the prices. Whoa! And secondly…PAID REVIEWS? How can you possibly do an honest review when you are getting paid for it? (Hint: you can’t).
- And how about this post titled “How GliadinX Saved My Mom on Thanksgiving”. What’s GliadinX? It’s the same bullshit product as GlutenEase or Gluten Cutter (read this) or Glutenaid or GlutenCheater or GlutenGlutton. Ok…I made those last two up. So his mom ate the wrong pie but THANK GOD there was GliadinX in the house. She took some and BOOM she was just fine. So go ahead celiacs, not need to be so careful. GliadinX will save the day. Oh…what’s that? GliadinX is a main advertiser on their site? I’m sure it’s just a coincidence!
- And don’t even get me started on their love affair with General Mills. How about this headine: Are Cheerios Really “Not Safe For Celiacs?” Or is General Mills Getting a Bad Rap?. Or “Is the Canadian Celiac Association Spreading Fear and Misinformation About Gluten Free Cheerios?”
- I was going to say more but since I just threw up in my mouth a little, I’m moving on.
Case in point: A popular celiac, with almost 90,000 social media followers, recently posted a picture of herself promoting Omission beer. Omission is not gluten-free and has been discussed on this site many, many times. Omission is not safe for the celiac community. When I commented that Omission was not safe, she deleted my comment. When I asked her privately and politely on Twitter to help me understand why she would promote a product that is not safe, she ignored me. When I asked her to just be honest and let her community know that all of her IG posts are sponsored, she accused me of stalking her. Nice.
Case in point: Promotion of the Nima Sensor. It’s gotten out of hand. The Nima Sensor may or may not be accurate. From the research I have done, there seems to be A LOT of false positives. On top of that, no third-party validation of their results have been released. So let’s just say, celiacs should have a “wait on see” approach on this one. But f**k that when there’s money to be made. I have seen more sponsored posts from celiac bloggers saying “Yay! [Random food item] came back negative on the Nima so I can definitely eat this and you can too!!!” No. NO NO NO. That is not what it means. Even the people at Nima don’t say that. It is NOT an end-all-be-all tool and should NEVER be promoted that way. But hey…gotta pay the bills I guess.
I’ve got a lot more cases in points (case in points? cases of points??), but you get the gist. Plus…I’ve got to go get a haircut. Which reminds me of the worst joke I have ever heard, from my 10th grade science teacher.
Me: Mr. Smith…did you get a haircut?
Mr Smith: No…I got them all cut.
So yeah…I’m beyond frustrated. There is already enough misinformation out there. There is already enough jokes at the expense of our community. There is already so little attention given to the DISEASE because we tend to only focus on the damn food.
(“Did you know that having celiac disease increases your risk of cancer? Yeah…but did you hear they have gluten-free Twinkies now??)
So what do I say to my fellow advocates? If you are doing something JUST for the money, you may not be helping the celiac community. If more than half of your posts are sponsored posts, you may not be helping the celiac community. If you are in bed with companies whose practices are suspect, you may not be helping the community. Every advocate’s position should be “community first”. But for too many, it’s not. And that saddens me. Celiac is a serious autoimmune disease. It’s not a career choice.
This begets the question (begets? who AM I today??), what do I do?
Well…my 2018 goal is to be MUCH happier (and become an astronaut) so I can just stop being Gluten Dude, which will relieve me of a lot of frustration. I’ve been thinking about this for some time now. If I’m getting more frustration with others than pleasure out of what I’m doing, well…maybe it’s time to just hang up the high heels…I mean the cleats. I spend so much time on this site, on social media, replying to tons of private emails, all to help the community. And damn…I do love it. But I simply cannot watch everyone else around me cash out on their disease, while I’m an idiot over here just trying to help people.
Or I can just keep doing my thing and try my best to ignore all of the BS that goes on in our community. But I’m not good at ignoring BS. I’m a passionate guy and ignoring BS goes against my genetic makeup.
(My god…I said this would be a quick post. Is it still Friday?)
I’m gonna try to find a middle ground. I wanna keep helping people. I really do. It gives me true pleasure helping others. And I am going to stop following people on social media who are driving me crazy. I’m sure I’ll still get frustrated, but perhaps not as much. If I can find the balance…awesome. If not…well let’s just wait and see.
Many thanks, as always, for listening.
No bashing here, but I have a LOT of respect for you. You blog was one of the first I found when my son was diagnosed almost 5 years ago, and it is the one I follow the most because you do an awesome job of saying it how it is, the good and the bad – and just the plain funny. Thank you for that, as I donāt like fluff. Your frustrations are valid and I share them. Nuff said on that topic. Do what makes you happy either way, but know you have my respect.
This is what I was going to say, almost word for word, even the diagnosis timing for my son! Weird. Anyway, you do you GD. You do you. As someone who works in customer service, people suck in general. When you start adding extra stressors people only seem to go 2 ways, nice and douche bag….I’ll let you decide which one happens more often.
You helped keep me sane those first months trying to figure this disease out. I hope you stick around but completely understand if you hang up your heels…er, cleats!
Much appreciated Sarah.
I really hope you will not quit. You are the only one I go to for valid info (don’t get me wrong, of course I also research things myself as well.)
Without advocates like you, I fear for our community.
As always, thanks for all of your hard work and dedication. You ROCK.
Says a lot about the community…sadly. Thanks Stephanie.
I can’t tell you whether you stay or go off-line. That’s a decision only you can make!
I can tell you that I agree wholeheartedly and I feel the same way about most of the celiac sites. Your not alone in that.
I can also tell you that I may not be where I am mentally or physically in dealing with this crap ass disease if it wasn’t for your site. Thank you for your humor and your honesty!
Stay and I’ll keep reading. Go…well if you go, you have my support! Enjoy life, it’s too damn short not too!!
“Enjoy life, itās too damn short not too!!”
Hell yeah!!!!!
Hey Dude,
I get you.
But Iāll tell you this- you inspired me to stand up for myself at restaurants, and happily, a couple have changed to suit me. One even keeps Glutenberg in stock because I wrote them an email showing the recent testing of Gluten removed beers (they carried Omission).
I was terrified to go out to eat. But now Iām savvy.
The abuse adds up and it sucks. If you want to hang up the keyboard, Iām with you man.
There are some of us left that arenāt caught up in the consumerist āooh I can eat that?!ā mentality.
So cool a restaurant carries Glutenberg for you. Keep your savviness (not a real word) going!
Please do not give up. We need you advocating for us. If you quit, just look what we are left to, would you really do that to us. Keep up the good work. Thanks
At least you’re not laying any guilt on me (lol).
Please donāt let it all push you away. We need you. We need someone who doesnāt pull punches. This life is hell. (Could be worse I know.) But we need an advocate. And youāre our best gun there.
Appreciate that Stephenie…
In the end, all you can do is teach correct principles and hope that people will learn to govern themselves. And hopefully the market will work itself out re: “gluten free” Cheerios, and the websites. But, I do think you provide a valuable service to the celiac/food allergy community. I’m not celiac, but I learn so much from you. So keep on, keep the faith!
Totally…it’s just that a lot of celiacs will get bad info from other sites and use that as their guidance. But I know I have no control over that.
All I can say, Dude, aside from being a delightful Words With Friends foe, you’ve been a crucial source of critical thought in this whole conversation about celiac disease and the GF fad. You’ve already made an important impact, so if you decide to go on with life without this, I commend you. I couldn’t do what you do – but the world needs people like you to cut through all the BS that’s out there. You’re the rudder on the ship, my friend. Maybe it’s time for part 2 of the Naked Truth?
I’m only delightful because you kick my butt every game (lol). Seriously appreciate your sentiments. Happy New Year to you.
Dude,
You have made me a strong and confident Celiactivist. I feel pretty damn good about asserting my needs in terms of safety, and help others just starting out to do the same. I feel confident in speaking out, and that has reflected into other aspects of my life. You have helped me, and others see through the scare tactic bullshit, helped us to get over the Stockholm Syndrome that comes with the beginning gluten free diet.
I really hope that you keep up the fight, but understand if it is time to lay down the sword.
Thank you.
Awesome Amanda. Thanks.
Keep up, we know your comments and suggestions are not “paid for”, and you have a lot of respect in the GF community. I attend a Florida Support Group, every month there is a new person who needs to be educated on how to avoid all the misinformation on the Internet. Take pride in knowing that your blog is VERY HELPFUL!!!
Thanks Shelley!
You have helped me in SO MANY WAYS! Plus you’re funny – that’s important because celiacs sucks big time. I live in a small community with zero support. I rely heavily on the internet for reliable information – which is very difficult to find. You are the one I turned to first and foremost. I was not – heck – I’m sadly still not in an acceptable antibody range but your advice regarding going dairy, egg and grain free made a huge impact on my numbers and my overall weight. You even have a nickname in our house – “Duten Glued.” Yes I got the first sounds mixed up. Can anyone say Brain Fog? I hope you stick with it. I do believe you are irreplaceable.
I have a nickname in my house too (you don’t wanna know.) Much appreciate the words Cheryl.
In my 5 years post diagnosis, you’re the only one I trust. You’re the only one that is all in, all the time. I can’t tell you how many I follow that “just had to try the new cheerios, or gf removed beer” because they miss it so much. I feel like you’re the last one standing for us that have celiac disease and know it’s 100% gf. Yes. Really.
At least there’s no pressure on me (ha!)
Don’t forget to add to your list the Facebook group glutenfreefamilies with 18K members and the admins don’t allow anyone to post things found on your site or GFwatchdog (we don’t believe in her research…as if they have read any of it) because…well..Cheerios. And McDonalds. And anything the admins want if it’s gf or not. I struggle with the ignoring BS too. I retired from my dietitian job a year ago, but I am still a dietitian and still a celiac. If you dare to counter false claims you are just kicked out of groups or your comments deleted. I hope you find a balance. I found crochet and let me tell you, it’s better than Xanax.
Better than Xanax?? (hee hee). Thanks Gloria.
Hi Dude! Interesting post. Im from ARGENTINA. My daughter is 7 years old and celiac.
Im always sending mail s to her, with photos and storys by email so she can read them in the future. One day I came across your Thanksgiving post “NOT FOCUS ON THE FOOD” and send her. I told her I finally found what I was looking for in a blog… and that was YOU!. Really, WE LOVE YOU!!! Keep on going! WeĀ“re here for you!.
Aw…so good to know. And yeah…focus on people first. Thank you.
I rely on you and only you for celiac news. If you quit, I will no longer have a trusted source of celiac info! I will respect your need to take care of yourself if you do quit, but will miss you!
Understood…thanks.
Dear Mr. Dude,
Chin up. First, you and Jennifer Esposito are my trusted “go-to” peeps when it comes to the truth about celiac. Second, I honestly don’t know where I’d be in my healing if it weren’t for your book, your blog, your posts. You tell the truth. When I question something I’ve heard, or read – I pay a visit to your site to investigate. You see, I’m only one year diagnosed. Luckily I found you as a resource. Yup – there’s a ton of BS out there regarding our disease. I bet your passionate investigating, questioning, and general straight shooting approach can feel tiresome when paddling against the tide of misinformation. Heck, even some doctors in the field aren’t helping get the truth across regarding celiac. Unfortunate, at best. Regardless, you set your sails straight. Keep on keepin on – please. We need you. Irreplaceable indeed.
I leave you with this glorious portion of Invictus, by William Ernest Henley:
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate,
I am the captain of my soul.
Thank you for being an excellent Captain.
Oh captain my captain.
Love that Patricia. And yeah…can feel tiresome for sure.
Thanks tons for the support!
I agree that there’s this rush of “experts” that will say “celiacs , use this and all your problems will go away”. It’s in part the instant gratification society we have become used to.
Regarding the Nima sensor, I’d rather have a false positive than a false negative. It still has its limitations, which I am fully aware of. I was about to eat a homemade baked beans because I got a “Nima approved”. But then he remembered he put a beer in the mix! I know Nima can’t protect me from everything, but it has helped me expand my restaurant experiences and I have had significantly less glutened episodes because of the tester.
Working in pharma research, I know each person responds differently to the same compound. So I know to never trust “safe for all celiacs” claims. Any advice I offer is always qualified with “in my experience, this works (or does not work)”.
But in our busy lives, most people do not have the time or energy to think for themselves. They want a solid “yes” or “no” answer to their gluten free questions. I understand your frustration, and if getting away from all the “expert opinions” that you get for everything you say, then enjoy a quiet normal gluten free life (as normal as celiacs can get). Best of luck to you.
Understood about the Nima. My beef is more about how people are promoting it irresponsibly. No excuse. Well…$$$$.
Thanks Jennifer.
I haven’t posted on one of your posts in a long time and not because I don’t like you, but I did back away from a lot of reading and involving myself due to frustrations like the ones you name and many others. And again wasn’t you. I still follow you on IG and it is how I got here And I’ve had a week or so off! š
Do what you need to do to stay happy. Or back off a little for sanity. Take a break and come back. It is true that you are one of the ones who educates the right way. It was probably your initial posts on Cheerios that got me searching and learning about it before I tried. And I never did try. I don’t take chances anymore. Now people are talking about the bathroom test to see …
I have found returning to “normal” was good for me. The only place I share is IG. I stopped following stuff on FB and rarely get on Twitter and it has been nice!
It will all be ok, whichever way you go. Do watcha wanna!
Hey Wendy!! Hope all is well.
A temp social media break may be the answer.
I hope you continue blogging and standing up for REAL in the celiac community. A lot of what you say is true. Money is indeed the root of all evil and it’s paying dividends on other sites, unfortunately. Continue to be the true champion here; your readership would be lost without you. Yet we would all understand if you had to disconnect due to the BS going on. Keep rockin’, dude, and do what’s best for you.
Thanks Georgette.
You are an important voice, and you arenāt alone. Your frustrations are also ours. Donāt stop being you. We need you! Maybe you should channel all this into a new celiac disease foundation that is truly dedicated to the health and safety, and furthering sound research for treatments that might bring us to a cure. š¤Æ
If only I had the time (parent, spouse, small business owner, etc, etc.)
Hey Gluten Dude, I run a start up GF Advocate and I have noticed a couple of things in the last year or so after I started scrutinising a lot of other GF advocate sites:
1. In most countries, including mine, the perceived GF authority is limp. They are so over stretched for resources they either:
Sell out and their honourable intent is muted by the sound of the cash register and they fail ( just like you describe in your article) or
They are unable to rollout protective measures and processes to a wide enough demographic ( including food outlets and manufacturers). As a result they are left behind by the GF community to go chase those Facebook and blogging barons.
2. It takes balls to do what you do. I know of no other advocate internationally who is as well endowed as you. š This of course has consequences- if only there was some way to find the middle ground and position all those who follow you as ballast for these periods you are feeling like you are the lone ranger.
3. Putting the GF advocacy aside, I love reading your articles because your style is absolutely unique.
It’s ‘clean’ and direct and first person. It’s inviting and doesn’t feel sanitised by some robotic SEO engine. I really do enjoy reading them. ( can you tell I like them a lot).
Maybe consider an alternate source of monetisation in teaching others to be honest representatives for the GF community. You know you could sell articles that teach people what to look out for and how best to address things they come across. I would buy that!!
4. Hold your course GD. You have had a particularly tough time these last few months with people and organisations responding in a negative way to being called out.
This means you are considered by them as an influencer.
They don’t like being found out or having their income stream compromised. Doesn’t this mean that you have achieved the high ground to actually do what you set out to do?
Excellent. Excellent. Excellent. (But well endowed? Debatable.)
You are always appreciated . I have learned a lot from you. I like your sense of humour. I appreciate what you do for all of us. There is very little true and honest support out there.
Btw,. I can’t access the tip jar… Let me know how I can buy you a beer š
Just send me a blank check…I’ll take care of it.
(I think you were able to access it…thanks!)
So glad you are out there truthfully advocating for us. Thankful for all you have done and for your honest confrontation when others are not honest. You are a big enough media presence that the rest of us are so much more enlightened. Thank you GD!
Many thanks Chris.
Barbara
I am an older Celiac diagnosed back in the age of only rice cakes etc. I love your column and your honest comments on other sites that come out for some of theses new products that state they are our savior from a boring diet. I donāt even try these products for the most part as I have tapioca and soy problems along with gluten and I learned long ago that the simpler the agredients in a product the better it is for this immune comprised body! Thank you for your advocacy!
Thanks Barbara!
Do what’s best for you. I’m not dependent on anyone regarding my celiac/sprue. I don’t buy products sold by anyone online regarding celiac and never will. I took good care of me way before the internet, forums, and the rest of social media existed. I was actually more at peace with my sprue than I am now. I foolishly thought I could help people to relax and just enjoy life albeit gluten free. I’ve learned a lot about people through social media. I gave up expecting kindness a long time ago. I think it was about the time a moderator sent me an email telling me he believed my son was mentally ill and he feared for my safety. I’m still alive lmao! They didn’t like a video my son had shared on youtube. He made it in anger because he heard my sobbing over the way I was treated by them. According to them he was a horse’s ass and possibly a danger to me and others. He has yet to commit a crime or hurt anyone. Well anyhow it was your favorite forum. Eventually I was banned and blocked from even reading the forum. However, I could still see and purchase items from his online gluten free mall. I refuse to support him or anyone else who tries to make a profit from celiac/sprue.
Galwayfan – thank you or saying what I feel.
Galwayfan – thank you for saying what I feel.
” Iāve learned a lot about people through social media.”
You said it!
Whatever you decide, you made my first year of being an official Celiac a breeze.
We who are apt to defend a cause burn out easily from the wounds of others. You have to sleep at night and I doubt you could if you sold out. You are not responsible for the opinions of others. Whatever you decide, I spent many nights after diagnosis absorbing your blog. Thank you.
Sleep? What’s that??
Much appreciated.
Whatever you decide to do next, I just want to let you know that you have inspired me to stand up for myself, and have educated me on this disease. Your blog was one of the first ones I found after my diagnosis, and I trust and believe in you. But, you must do what is right for you, follow your ā¤ļø.
Much appreciated JoAnn…
You quit….they win, we lose.
However, do what is best for you.
Thank you for all your honesty and help in navigating CD.
If you don’t have honesty, you got nothing. Thanks Christine.
I don’t follow those who pay their bills with “it’s almost gluten free” tainted money from sponsors like Cheerios, Nima Sensor, and Omission. I have no respect for those who think more highly of a product endorsement than the life/health of a person with Celiac.
Truth is needed and many of us rely on your steady stream of truthfulness. Take care of you, Gluten Dude. We’ll miss you if you go, we’ll rejoice if you stay.
Yeah…makes me so sad the number of sellouts in our community. Appreciate your sentiments Mary.
Best wishes and peace to you. What you do is important.
Many thanks Cara. Really appreciate it.
Keep doing you, GD! Keep calling them out. So many of us still rely on accurate info.
Although, there is one GF FB page I follow and she does a lot of Nima Sensor tests.I like to follow the results she gets as I’m never going to afford one so I’ll let her pay for the tests and I’ll just keep track of the results.
Have you considered a podcast? I’d totally listen to you out rant about Udi’s and all the other BS but the positives as well.
Happy New Year! Don’t let the BS get you down! Good eats!
Yeah…totally been thinking about a podcast!
Keep doing you, GD! Keep calling them out. So many of us still rely on accurate info, even years later.
Although, there is one GF FB page I follow and she does a lot of Nima Sensor tests.I like to follow the results she gets as I’m never going to afford one so I’ll let her pay for the tests and I’ll just keep track of the results.
Have you considered a podcast? I’d totally listen to you out rant about Udi’s and all the other BS but the positives as well.
Happy New Year! Don’t let the BS get you down! Good eats!
Dude, Your blog is the only one I read. I’ll miss you.
“And I’m just calling you one last time
Not to change your mind, but just to say I miss you, baby
Good luck, goodbye”
You can just call me “Bobby Jean”. Thanks Cathy.
8 year Celiac. Yours is the only gluten free blog I read. I spent very little time on the CDF and Celiac.com websites because I found yours. I cannot thank you enough for your hard work and accurate information. You are a gift to our community and a ray of sunshine through the clouds.
Thanks Anne. Nice to know.
I just wanted to add my appreciation for all you do. Your blog is the only GF one I follow because it is so down-to-earth. I must admit I donāt get a lot of your music and movie references but I still enjoy reading what you have to say! š Thank you for being a reliable source of information!
Yeah…I can be a little out there with my references, hopeful that at least a few people get them. Appreciate it.
GD, you helped me so much over the years. You have put up with a lot of BS and I can understand your frustration. In regards to the Nima sensor, I bought one b/c I was traveling to the mainland and thought it was “end all be all tool.” I learned it is not. I had a few false positives, (tested 3 x) and went hungry a few times and threw out food that was expensive. I should have read some of your info about it first. My point, your research,honest approach and compassion for the community beats any other celiac blog. As others have said, “Life is too short go do what makes you feel good.”
You are one of my favorites Aloha. Would love to hear more about the false positives.
Don’t let the bastards grind you down. We need you.
American Heart Association and American Diabetes Association are also compromised by Big Food and Big Pharma. After a 2nd Celiac Association event 7 years ago it became apparent that people were trying to figure out how to make money off of Gluten Free. Nothing has changed it has just gotten worse.
I have stopped looking at any GF site except your very informative site because I saw a lot of sponsored ads being added to other early GF bloggers. I buy very few commercially made gluten free products because they are often unhealthy, over processed and are not really GF. But that is true about a lot of food on the grocery shelves.
It seems to me that trying to change people who choose to promote incorrect information is exhausting.
I have stopped answering any questions about Celiac Disease and refer people to your site. People choose the answers to the questions they ask based on what they want to believe rather than actual facts. Cheerios is a good example.
The information and experiences you share are VALUABLE.
Ask for money every post you put out because that is becoming the norm for accurate Internet information. Content production incurs costs and the creator deserves to be compensated.
Thank You
I love your blog and our community needs you. You make me feel good when I’m discouraged, and I appreciate how you always tell it like it is. Information, information! There’s SO MUCH nonsense–and dangerous nonsense–out there that the last thing we should be doing is feeding into it. You never do. And I did indeed just buy you a GF beer. Thanks as always, GD. (And I think it’s fine to have your tip jar out there. You give us so much. I have no problem with it. It ‘s just a voluntary thing, after all.)
Keep up the good fight!
I’m not celiac, I have a severe wheat allergy and helping fight against things like Omission beer might save my life some day.
I’ve gotten spoiled by the gluten free diet that has become so prevalent. I have been able to eat out, grab great snacks, etc. I worry that I might accidentally grab some pseudo-gf item some day and have a life ending incident.
Hi Gluten Dude-
Itās so encouraging to see how much support you have and how many people youāve helped!
Iām coming up on the 10-year anniversary of my diagnosis and your website was one of the only ones that didnāt make me feel overwhelmed and alone. And I loved that it wasnāt all āsunshine and rainbowsā like the others that said āwell now youāre eating healthier because of this diseaseā!! While thatās true, it felt like you were the only one that got how isolating it can be and how serious it is to our health to not be informed. Itās always been nice to commiserate with you about the good, the bad, and the challenges we all face.
As others said- do what makes you happy but if you can keep doing what youāre doing and somehow find peace, that would be most ideal. Thanks again.
You need to do what you need to do but always remember you are mportant to us. I just hit the tip jar for a monthly recurring (because I can and for others who canāt) because what you do is important for me.
Iām so glad you wrote this post. I was thinking the same thing. That post about GliadinX was completely ridiculous. I just had to laugh about that.
Thank you for standing up for the celiac community. Please donāt quit. Too many bloggers use Celiac just to make money. Sometimes I donāt believe they even have Celiac, because as a Celiac you donāt run out and try every new product offering that might not be safe. I think Nima sensor is the best thing that happened to them to help their marketing.
Please DON’T give up!! We rely on you for good and honest info. I never question anything that you say. If you wrote it then it totally true!! We all know that money talks but you keep us on the straight and narrow!! Please stay the course!!
Please DON’T give up!! We rely on you for good and honest info. I never question anything that you say. If you wrote it then it totally true!! We all know that money talks but you keep us on the straight and narrow!! Please stay the course!!
GD, for all that you do for your fellow Celiacs–thank you, thank you, THANK YOU!!!
Your website was one of the first that I read (devoured) when I found out I had celiac disease two years ago. I was a biochemist once upon a time and the poor science on most of the celiac websites/ forums inevitably has me bashing my head on my computer and stomping around my house in a frustrated funk after visiting them. (Just ask my family about my Cheerios rants whenever I read an article on Celiac.com.) Your site is a blessed reprieve from all the nonsense out there. You tell it like it is with a dash of humor. Thank you!
You have saved me from a world of hurt and helped me skip many years of subpar health. In my research I came across the benefits of a Paleo like diet ( or Whole 30, whatever you want to label a simple, whole foods, no grain food plan). Serendipitously, at the same time you were writing about the same path. That was the little extra push I needed. Thank you for your honesty, bravery and willingness to share your life and struggles with us. We benefit from your experience.
If stepping away from your blog will bring you peace and happiness then do it and may God bless you richly. Just know that you have touched and helped so very many people and you will be missed!!!
Dude you’re awesome. I was diagnosed with gluten intolerance by my doctor, which took about 2 years to figure out. I appreciate you for not implying my issue is “not real” because I tested negative for celiac, because I wrestled with that myself. At first I ate tons of “gluten free” processed foods (including those evil cheerios) and often felt like crap. Thanks to you I did the whole 30, stopped eating all that crap, and healed up. I eat real food, except for my beloved canyon bakehouse bread which I found thanks to you. Please realize how many people you have educated and helped, while making us laugh. THANK YOU!! Whatever you do I wish you health and happiness.
Thank you for being who you are and not selling out! I find your posts refreshingly honest and so important for educating myself and others while having a good laugh. I do hope you continue, as I ready your blog regularly, but totally get that you need to what’s best for you and your life. Take care of yourself & Mrs Dude.
Your work as an advocate has been around much longer than mine (I’m a relative newbie, having been diagnosed officially only five years ago, and blog launched only two years ago). It’s seems like a natural part of the process to evaluate and examine what you would do differently every single year.
As an entrepreneur, I think it is still important to cover your own needs, wishes, and desires, which include happiness, satisfaction, dreams, and income. So very many of your readers are giving you feedback that they appreciate all that you have done, and they sound supportive of your thoughts regarding taking some time off to reassess.
Question: if you stayed away from the click bait, the advertisements of sponsored companies, and focused on your writing, speaking engagements and gigs, and branched out into other areas that could bring in revenue for you, would that change how you felt, even knowing that these other companies are going to keep doing the wrong thing?
I ask, because from the very beginning of my journey, I have seen the wrong thing being done to the CD/gluten-free community, and it has only fired me up MORE to speak up. In doing so, it’s become important to understand my strengths, of which POWER is not one of them. However, it may very well be yours, in that you had the tenacity to “take on” food companies with Power as one of your strengths.
Meaning, the presence of people doing the wrong thing can also help solidify what makes your voice different and needed in this space, and brings out this Power aspect of you. You become protective of others, a Powerful protector. I am sure many have experienced that protection from you, and benefited greatly.
Granted, I’m not exhausted. I don’t have your following. I don’t have tons of people sending me emails –just a trickle, but they are heavy, trust me, on how to heal their Bechets, slow down MS flares, and how to incorporate probiotic therapy while applying for OIT in their allergist’s office for their food allergic children. So many stories. It’s very heavy.
Yet look at you! You have become strong enough to be physically active. You are healed (and a lot of people CD do not experience full healing from CD/Leaky Gut for 7-9 years post diagnosis(. You have a platform based on your experience, and you can sleep with a clear conscious at night. You’re at a place where you could “take it or leave it”, having accomplished much.
I just have this sneaky suspicion (suspicion, since I don’t know you and never met you) that you compiled the responses to your blog posts for the writing of your most recent book, release in the same season you are in the biggest fight for the reason why you should continue this blog at all. I hope you’ll see it as one of the ways you’ve been preparing for this moment for a long time.
Please, please don’t shut the site down! It is very helpful.
As to those who are misbehaving… if it upsets you to see them do it, perhaps the best thing to do is to not look any more Focus on this site and if the others are messing up, well, you can’t stop them apparently, so just ignore them. And if you find out about something bad, just mention it here for the rest of us, and move along. This site is a positive thing, so perhaps focusing on that rather than the bad will do some good.
Just a suggestion. It’s easy to get all wrapped up in things that you can’t help with. I’m pretty bad about that myself.
Just a suggestion. Do what you want, of course, but some things may just not be worth it.
As a newly diagnosed celiac, Iāve just recently become familiar with your blog after I purchased your book. I may not have as long of a relationship with this site as others. However, in one short week youāve already given me the guts to put my foot down and start to demand some changes in our household (no matter how many times my boyfriend calls me paranoid). Youāve helped me answer some questions I didnāt even know I needed an answer to. Youāre the voice that so many of us need. I only hope that voice isnāt silenced when Iāve just located such a brilliant and ballsy diamond in this huge celiac rough.
Everyone needs peace though so if stepping away is what will make you happy – you deserve it after all the people youāve helped. Thank you for all you do and all youāve done.
I like your post, Christine…however, I think that the “winners” are going to be the losers at the end. Whoever makes money at the expense of others’ disgrace would end up broke.
Dude!!! Youāre entitled to a CD Rant as well! I have also become disheartened by whatās going on with social media and the proliferation of C.D. āadvocatesā/bloggers. There are a few who are legit but their voices are becoming lost in the din of those intetested in cashing in. I recently quit using IG because I decided that it was no longer helpful and I havenāt used FB in years. Contrived and self-interested are two terms that come to mind in connection with social media, not to mention the fact that the expectation of our right to online privacy is a load of bs! Ahem…big brother? No joke!
Please do whatās best for you and your family. Know that you will be missed if you go but the legacy that is Gluten Dude has and will continue to be a positive thing.
Many thanks for keeping it real (and for putting me on your Faces of Celiac wall of fame) ;p
Cheers!
Hey there Dude. No bashing here either. Think that you have led a noble cause on behalf of all your TRUE followers. Please don’t allow the haters to be the undoing of your great blog. You have stood up to big businesses that have sought to fill their pockets, misinform the Celiac/GF Intolerant community and take advantage of those us who are not not as savvey in all the knowledge out there about our disease.
We need people like you to educate us about all this. There is too much out there for us to take in. This disease has too many demons involved in it’s ugly manifestation.
I was in a local restaurant the other night, whch is owned by a womn with CD and the people in the booth behind were talking to her and commented on the GF menu she has and that their grandson has CD, but that he could eat gluten because he had a medication he could take to elimnate the effects!! I could hear the owner asking what it was that he coud take and they could not tell her…she was getting a little more inquisitive and they were getting a even more ignorant as they didn’t even really know what gluten was, but were very insistant that he had a pill! When I got up to pay my bill, the owner met me at the register and asked me if heard the conversation and I nodded yes. She laughed and said that she was really wanting to know what this miracle med was, and so did I. I just figured it must be one of the “gluten blockers”. I then remarked that they were clearly not as involved in their grandsons condition as they should be and shuddered at what this kid must be, being told. These people were just not eduacted and completely unaware about Celiac Disease.
This is one of the reasons why we need advocates like you and Jennifer to do the dirty work that most of us do not have the voice or balls to do.
Thank you for your great and humorous blog…thank you to Mrs. Dude for supporting you in all your efforts and sacrificing time to make sure that we are informed, educated and most of all HEARD an SEEN!!!!
You are my island of integrity in an insane, marketing driven, celiac madhouse. Those who would profit over my illness have no place in my environment.
https://www.c-span.org/video/?432111-2/altered-genes-twisted-truth. This is a good video that describes how the FDA simply does not reveal the harm done by genetically engineered foods. The wheat hybridization process has destroyed lives. In general it’s good information to have.
This is very serious; those people should be educated by a good doctor about that allegedly CD “pill”. Unfortunately we know there is nothing in the market for celiac disease. A kid that continues eating gluten can die, plain and simple; his or her small intestine is very small compared to the adult’s intestine and if it gets damaged completely the patient may die; it has happened before.
And also I agree with people when they are saying Gluten Dude should do what he thinks is more convenient for him and his family. I would tell Gluten Dude to have a very good conversation with his pillow at night asking what does he really want from life at this point. Does he feel he reached his goals as advocate or is he ready to do something else? Or maybe he is ready to advocate in a different way, using other means? I would tell him to imagine how he would feel doing something completely different or something similar, or staying doing the same (I would explore about those feelings when he imagines different scenarios in his life and go from there). But that is me, my advice. For Gluten Dude the best advice is the one that comes from his own soul.
Gluten Dude: may you be guided to your best self always. May the light shine always with you. God bless you.
The only Celiac site I have bookmarked is glutendude.com. The rest of them? Pretty much sell outs just as you have called them out.
What people don’t get, including the FDA that is there to protect the consumer (HAHAHA!), is that ANY amount of gluten/gliadin is too much for a celiac. I know this first hand from trying a protein powder that ticked all the proper gluten free boxes on the label. It then ticked off my gut and I knew I had been duped. Worked directly with the manufacturer as they were concerned it might be a recall issue. ~sigh~ Yeah, they ran the ELISA test and it came back 5.16 ppm. Then the response became, “Sorry, you must just been an extremely sensitive celiac (oh, and they did reimburse my cost),” and “Why don’t you donate any remaining unopened product to a food bank as they are always in need of gluten free options.” Did you catch that? What sounds like a noble gesture of donating to a food bank actually said to me, “Regardless of the fact that you now know the FDA claims of less than 20ppm are bogus, why don’t you donate this poison to trigger other unsuspecting celiacs?”
Remedy? I followed the advise of Gluten Dude and began eating clean. Wow! What a difference. Thank you! Thank you! Thank you! And my prayers are for you to find a balance that allows this site to continue for the Celiacs that truly want to heal and no longer be continuously symptomatic.
And to the rest of the community? I am heading for that tip jar as soon as the “post comment” button is pressed. Up to this point I had not contributed but HEY! if we ALL chip in…we can keep the Dude drunk…and everybody knows a drunk Dude is a happy Dude :)) Problem solved. Well, except for the fact that if this works I should apologize to Mrs. Dude in advance for keeping her husband drunk. LOL.
Hey there Gluten Dude. Hope all of these amazing comments brighten your day and give you inspiration to keep going. Try to figure out how to do it on your terms and keep doing what you love. As Taylor Swift put it…the haters are going to hate. Just ignore them. Maybe take a rest from social media but don’t quit.
Am a doc and I love reading your blog posts, maybe except for the doctor bashing, but my colleagues sound like they deserve it! The celiac community seems fractured on many ways….whether it is individual research centers looking for money or as you point out with advocates/websites.
Keep being a voice. You have a powerful message by telling people hang in there with the diet/diagnosis, eat real food not processed crap, and also by telling people this disease deserves respect.
What about Patreon??
It’s your choice whether you stay or whether you leave the Internet. You’ve already given us so much.
But I just want you to know that I just read “Eat Smart, The Life You Save May Be Your Own”. I’ve made a mid-life decision to re-train as a psychologist, and it’s hard juggling work and family and study and a spinal cord injury to boot. That post has given ME one more reason to keep going: because my community deserves mental health care that respects their disease. (So … did I make you feel important and worthwhile …?)
Also, I am about to tell my boss to read some of the posts on your blog, starting with “I’m Sorry … Is my Celiac Disease Bothering You?”. She needs to hear the word of the Dude. (How about now?)
Ditto about Patreon.
As a fellow Celiac, I appreciate the unbiased and no-BS information that you provide. I too have gotten sick from “gluten removed” beer, “gluten free” cereals, and other “gluten free” products that are being heavily promoted to the celiac community. The fact that you HAVEN’T sold out is one of the reasons I and many others trust you. Even if you don’t continue adding to your body of work, I do hope that this web site and informational resources it contains will remain available. Most importantly, THANK YOU for everything you have done for the celiac community.
Website is not going anywhere…that’s for sure. And odds are, I’ll be hanging around too. Thanks Vicki.
Your site is nearly the only celiac site I still read. I know that when I catch up and come read through your latest posts, that what I will get is unbiased, straight dope, and that the support you give is true to your heart. I’m grateful for that every week. Don’t give up, just forget about those phony advocates who don’t meet your standards. Just don’t lose your standards – that’s what makes you Gluten Dude. No BS, ever.
As a new Celiac my circle just keeps getting smaller and smaller, maybe you circle is a little too big and maybe theres some negative lines that need to get cut out.
P.S. WE NEED YOU!
Dude:
We need you. I’m a librarian and it’s become exhausting trying to know what a GF label means:
GF for celiacs, or
GF but not for celiacs.
The only ones I trust now are you and the GF Watchdog, and my amazing local celiac support group.
And PULEEZE!
On the very rare occasion that I decide I would like that gf entree/dessert – I want “civilian quality.”
Don’t combine all the dietary-restricted categories into one disgusting GF, dairy-free/vegan and no salt added, no GMO dry tasteless option. Sure it’s safe; because no one will want to actually eat it.
I’d better stop; obviously I’m hangry . . . The positive outcome is that like you, I just eat more whole food, and very little processed stuff.
PS: I LOVE it when you call Udi’s. Ha!
I decided to click on your link – first time I’ve been here in a year – after dealing with some odd stuff on reddit’s celiac forums and in my own life. On reddit, repeated aggressive shilling for Omission and other gluten-removed beers; more shilling for particular products while putting down the competition (falsely claiming CC or non-certified status); and constant plugging of the Nima in all sorts of peculiar contexts, my recent favorite being “Oh! The Nima will help me enjoy Thanksgiving with my non-celiac family!”
The mods aren’t interested in doing anything about the misinformation. They claim that everybody has a right to contribute. Even if it’s false or commercially biased, apparently.
Meanwhile, I learned 16 years post-CD diagnosis and GF that I have brain damage and gluten antibodies and a new rare autoimmune illness. And I’ve been slowly gaining weight. I eat pretty well, mostly whole-foods, but did allow myself to have GF substitutes a few times a week. It infuriates me that the occasional GF pizza and bowl of cereal and quarterly trip to PFChang’s may have caused this.
A new doctor suggested a ketogenic whole-foods diet in an attempt to stop the brain inflammation. So, lots of vegetables, meat and fat, and absolutely no carbohydrates, which means none of the GF substitute foods. It’s too soon to speak about improvements yet.
Most of the internet we see is now heavily commercialized. If you, GD, can afford to do so, you can continue to be a non-commodified resource for people who need answers to their health and social concerns. Instead of going after the corporations yourself, you could blog on your site about discrepancies, and let others do the research and nagging, so you’re not taking all the flak.
But this 100-plus-comment thread is evidence enough how much your honesty and clarity is appreciated.
This comment was not brought to you by Udi’s.
Yeah, I followed Nima through its development and I can weed out who I can or can’t trust by how they present their use of it. Nima has always presented it as another tool, like the Elisa test strips, that can give you more information and in the right situation more assurance about food you’re going to eat. But it doesn’t replace the care we’ve always had to take to check how things are prepared, verify ingredients, and all the other steps that need to be part of our daily life. Nima itself has never presented their sensor (at least in the things I’ve seen and read) any other way. And there have been many people who present their use of it and the results with the same caveats and advice. But I’ve also seen many that don’t. And that’s sad. I don’t have one. I’m pretty comfortable with my practices and they seem to work pretty well for me. I’m also very strict in adhering to them and if I even feel uncomfortable about it for reasons I can’t define, I don’t eat rather than risk it.
Thanks for your efforts. I very much appreciate them.
Don’t sell out – you are one of the trusted folks in our community. There are a few that I would love to call out who in my opinion just whore themself out for anything free, never give a bad review, has promoted Nima and Cheerios yet has a TON of followers and to me, isn’t someone I really trust for their opinion. Sponsorships or even sponsors of a blog is one thing. But plain old selling out – no, thank you. I miss the old days of blogging when I was first diagnosed. I used to blog under Gluten Free Steve. We weren’t in it for the money – just to help and advise and guide one another. And make connections in this world with others who “get it” of what living with Celiac is. It’s why I still have a blog but just can’t seem to get motivated. Too many are in it for the glory and the fame or the money or any free shit they can get their hands on to promote….I have a conscious and can’t do that….As for the tip jar, personally, I don’t think it’s a great idea but it’s your blog. I follow you because I admire and trust you. And appreciate you being an advocate for the community. Thanks for doing what you do.
Gluten Dude,
I hope you don’t stop writing because of the Idiocracy. Your blog is one of the few that is informative, describes the arduous process of going gluten free, and shows the reality and struggle of having celiac disease. It’s gut-wrenching (pardon the pun) to see other celiacs sell out and promote unhealthy lifestyles that not only harm themselves, but also the celiac/gluten-sensitive community as a whole. They’re a loud minority who, like non-compliant diabetics, don’t take their health (or that of other celiacs) seriously. Unfortunately, that is their choice. But know that there are many of us who are grateful for this blog because, as you know all too well, the majority of doctors, dietitians, and other health “specialists” don’t know their head from their ass when it comes to celiac disease. Had I not found your blog and learned what gluten free really meant, I would have continued to suffer from the effects of numerous vitamin deficiencies and other lovelies associated with an incomplete gluten free diet. Almost a year into my recovery, I am feeling better than I ever have. I’m still not 100%, but I am thankfully getting there. It isn’t just me; you’d be surprised how many people are being (legitimately) diagnosed and are learning how to take control of their health via this website. I personally know of two others in real life.
If being an advocate is, for you, something worth doing, then do it. Don’t let idiots dictate what you believe in, especially when they are 110% wrong!
Hi GD,
I have a few thots on this. I’m a semi regular visitor to your site + twitter friend (@ragmuffdesign). I’ve seen you bring this up a few times in the last two years or so, about possibly ditching Gluten Dude so you can be happy. It reminds me of when I was in my early 20’s and dating a very emotional abusive guy, and I kept saying to my friend, “I think I want to break up with him, I’m not sure,” then my wise friend finally got frustrated with me and said, “you’re clearly not happy. You’ve been dating 3 months and you should be over the moon! You shouldn’t be constantly bringing up that you want to break up!!” So long story short, I took her advice and we ended things. It’s been about 12 years now and I found out that he just left his wife of 8 years because he’s not ready to settle down and wants to go out and party some more. That happened! Meanwhile, I’ve been happily married for 6 years to the best guy ever. Bullet dodged!
But even though I’ve been so lucky and grateful for that, I have struggled for many, many years with one thing: thinking I owe people (when I don’t), being stressed out about other people’s needs, thinking other people’s burdens are my responsibility to take on. It was only in the last two years that I finally had to make some major changes in my life. I made those changes because I had a mental breakdown. I was forced to see myself for what I really was: someone who was using all of my energy taking care of other people.
The adjustments I made started with me turning off the news. I stopped reading all the updates in the world. I stopped reading comment sections or articles that were negative, angry and uninformed. I stopped reading opinion pieces that made fun of movies, books or TV shows I liked (I used to think reading all that would make me stronger, but it just made me mopey). I used to think it was my job to stay informed of every human right violation in the world, and that I would be a bad person if I didn’t know what was going on. But the truth was, I was taking too much on my shoulders, and it weighed me down more and more every day until I popped.
In my personal life, I had to cut off friendships with people who didn’t appreciate me. I had to stop regretting my past mistakes and beating myself up for them. Eventually I realized many of those weren’t even mistakes, they were just spun that way by toxic people. And here I had been agonizing over these things for years!
Obviously not everything I’m saying here parallels your situation. But I do see two common things: 1) that you’ve been talking about “breaking up” with GD for a long time and that could be a sign that maybe it is time, and 2) you actively watch horrific commercials and pay attention to every Celiac abomination on the planet, and you try to save the world. I realized that exposing myself to so much negativity doesn’t help me or anyone. It just makes me so sad and weighs me down. I can’t do anything for the world if I’m too depressed to get out of bed. And you feel like you owe it to the community, because the community has been so wonderful and so great and they take care of you and you take care of them.
As supportive and lovely as the Celiac community is, you don’t owe them half of your life. You’re allowed to do what’s right for you. There will always be activists, there will always be heroes. You’ve been doing this for over 10 years. You know who you do owe that half of your life to? You.
I’ve allowed myself to read/watch the news/opinions now, once in awhile. Just in moderation. But the way you THROW yourself into the deep end every time, like that time with the abhorrent super bowl commercial with Nick Offerman. Was it heroic? YES. Was it a great example of the little guy making a huge difference? YES YES! I was so excited when I saw what you did. But you took a HUGE beating from the world after that. And that can accumulate and affect your happiness, your health(!), everything. It’s really damaging. So it’s ok to pass the torch. You can let that Super Bowl story be a historic example, but let others follow it.
You have your amazing wife and daughter to take care of. You have your Web Design business. You have your health to take care of. And spending time with your friends and family, and putting time into your thriving business and your health, don’t forget that that is ALL helping people. You’re still being a hero by doing those things.
I hope that you will continue to be an advocate of this “invisible” disease that so many of us have. We need people like you that are willing to stand up for yourself and for the community. But, I also support you doing what is best for YOU. It can be a rough place out there, especially with so many wanting to advocate for gluten free life, but not always in ethical ways. I respect your stance and questioning the norms that too many are conforming to right now. Cheering you on, whatever that looks like from here!
It will be a very sad day if you leave, but I totally understand if you have to go š I just hope you find a way to stay; you are very loved here.
I am so glad youāre one of the first blogs I found when I was diagnosed. Not only do I have celiac disease but my husband was diagnosed 3 days before our wedding five years after I was. Neither of us started the relationship with celiac disease so we could be our own case study. Itās hard to trust what you see out there, but we have to remember that through the struggle weāre helping ourselves have a long and happy life. Thank you!!
I think I commented on this back in January. However, you did some good, and you didn’t know it. I’m not celiac, but I read your blog to understand what family and friends who ARE celiac are going thru and how I can be a better help to them. The daughter of our friends is in process of testing for celiac. They’re having her do elimination of wheat, gluten etc. Her dad mentioned that the doc said they could give her GF Cheerios. I said, “No you should not. Cheerios are actually not GF. There have been a lot of problems with them, that General Mills is not owning up to.” They were thankful for the info and took Cheerios out of the diet too.
After pointing you to the 5 studies that support GliadinX’s AN-PEP enzymes as actually proven to break down gliadin in the gut, (see the links at the bottom of the article: (www.celiac.com/articles.html/gluten-free-food-reviews/gliadinx-an-pep-enzymes-break-down-gluten-in-the-gut-a-product-review-r4171/) including a quote from Dr. Stefano Guandalini, University of Chicago Celiac Disease Center-Comer Childrenās Hospital, Chicago (www.mdpi.com/2072-6643/10/6/755/htm):
“12. Treatment of the Extra-Intestinal Manifestations of CD
the only one that is currently on the market is the gluten-specific enzyme, GliadinX (AN-PEP). Unfortunately, it is only capable of detoxifying 0.2 g of gluten or roughly that of 1/8 of a slice of gluten-containing bread. For this reason, it should only be used as an adjunct to the GFD when there are concerns for accidental gluten contamination and in an effort to ameliorate symptoms, not as a replacement for the GFD.”
It is intellectual dishonesty for you to keep the info in this article criticizing Celiac.com and GliadinX on your site.
Additionally, Cheerios are gluten-free, and there hasn’t been ANY testing that proves otherwise–millions of boxes are sold weekly with “gluten-free” on their label. Present evidence otherwise. Gluten Free Watchdog never produced the data they claimed they would produce on this.
I posted a comment about General Mills not being safe for celiacs on Celiac.com and they deleted my comment. There seems to be a huge, glaring conflict of interest on that website. How can they claim to be a website for and about all things Celiac when they advertise products that are clearly very unsafe to an audience of Celiacs? By the way there’s no chance in hell I’d ever use Gliadin-X. Gluten causes damage to my intestines, end of story. My trust in Celiac.com and any product they push is done.
They sold out a long time ago. It saddens me it still gets so much traffic. Argh!