Mrs. Dude says I need to have thicker skin. Like pretty much everything else she says about me, she’s probably right.
But I’ve been pierced lately from some fellow celiacs who I care deeply about.
Pierced by accusations that I’m too judgmental; too negative; too harsh; not flexible enough in my opinions.
Pierced by a handful of awesome celiacs who I used to connect with a lot on Twitter who no longer communicate with me.
All of the sudden, I see the celiac community become divided and that pains me to no end.
This is the last thing that I want.
I started this celiac blog for two reasons:
1) As a form of therapy to help me deal with the crap that is celiac disease.
2) To help others who are in the same boat as I am.
It was never meant to shine a bright, cheery light on the gluten-free life.
As a reader commented a few months ago…”celiac disease does not come complete with puppies and rainbows and unicorns shooting out of everyone’s behinds.”
And I’m proud of how far this blog has come.
I’m so touched by the community that we have created here and the many, many people we have ALL helped.
I’m grateful for the emails I receive every day, thanking me for creating a place where they can come and rant and be themselves.
But if what I am doing is dividing the celiac community, am I doing my job?
Look…I totally understand that eating comes with a huge emotional attachment. It’s a very personal thing and people need to find their own path.
I also know that many, many celiacs continue to suffer even though they are gluten free and eating mostly whole, natural food is the only thing that has helped me after five years of suffering.
But I never say “Do it my way or you’re wrong.”
If I talk about food, which is hardly my sole focus, I just try to get across what has helped for ME, knowing that it could perhaps help you too.
All I try to do is tell our stories, stories about the physical, social and emotional issues that are attached to our disease, and open people’s eyes a bit.
And yes, I’m sarcastic. I’m snarky. I can be borderline obnoxious (in a light-hearted way of course).
That’s just part of the package of who I am and how I get my message across.
As many have said before me and many will say after me, my celiac is not your celiac.
But we are all in this TOGETHER.
As I always say, I am a work in progress.
Thanks for listening.
173 thoughts on “Help Me…Help You”
Well said Dude! I think you’re an awesome addition to this community and I’m thankful to know you. I agree with you in a sense that sometimes people read things out of content but I regularly read your blogs, I’ve chatted with you on the phone and I’ve always felt the support from someone else who is going through what we are. Keep doing what you’re doing, don’t change because what you do helps so many.
Thanks very much Mr. Scheer. I hope to eventually meet up one day in the near future.
By opening up your life and opinion to the celiac community or any community for that matter is reason to enough to say thank you. I know far too well that you open yourself up to a world of criticism and judgment. It is not easy to take sometimes. Especially when our heart is in the right place as I KNOW yours is.
Regarding the celiac community, unfortunately there is a divide. One I wish was not so. I believe many are still too scared of the enormous change of life this brings. Which I must say stinks and is extremely difficult. Remember most celiacs have begged pleaded and gone for years being lied to about their health from the medical community. So trust is probably hard to come by.
I will say this though, I’ve had the opportunity to sit with Gluten Dude for hours and discuss what we have both been through. His road has not been an easy one. He genuinely wants to help. If you do not like his approach or way of saying things, TAKE a MINUTE and think What his journey was. He too has been lied to and sick in front of docs with no relief. SO if he expresses his journey differently then you, please be compassionate. The last thing we need is more misunderstanding. Especially from the people who should understand the best, other CELIACS.
The only way we will make movement in this disease is to accept our differences and embrace what makes us similar; this nasty, ever changing disease that needs people like Dude to bring attention and get us a better standard on which we need to LIVE!
Much love and acceptance
Not much I can say Jennifer except thank you to my fellow celiac advocate. You too are making quite a difference.
Says it all.
Geez, Jennifer E. loves you. What more do you want?
Well, I’m of the mind that we all travel our own path and that’s what makes life rich and interesting. How boring things would be if we were all the same and agreed on everything. Plus, how would we learn from each other?
Hang in there. You are snarky, that’s what makes you interesting. Be true to yourself.
Onward my friend.
“Geez, Jennifer E. loves you. What more do you want?”
Where do I start? 😉
I appreciate your kind works Melissa.
Putting yourself out there isn’t easy and not everyone will love you, but in the toughest moments when you get nasty comments or people who unsubscribe (because yes, it happens to us all!!), remember the folks whom you’ve helped. Remember the light that you’ve brought to their lives, even if it’s for a moment.
I always remember the clients I’ve worked with who have had such incredible changes in their life as a result of our work together. And I remember why I’m doing this — to have a conversation. I’d rather not fill my life and time with a bunch of YES men… diverse opinions add color and help me grow as an advocate, as a coach, and as a person.
Chances are the person who disagreed or outright doesn’t like what you have to say, may come to love you when they get further down the road.
I just checked my RSS feed…holy sh*t, people HAVE unsubscribed 😉
Well I normally get a smile and sometimes a chuckle when I read this blog, so thank you.
I also feel more empowered for making change than I did before. Not change in my own home, but in the advocacy arena. I complain to companies who are not addressing Celiac’s needs by using correct labelling. I complain to companies who are making fun of Celiacs disease in their advertizements and I request certain products be brought into my favourite groceries and be placed appropriately (ie. don’t put the gluten free bread down the regular bread aisle, we don’t go there, put it with the other gluten free items). So you, and another blog I visit have given me the encouragement to be a better advocate on behalf of the community.
I’m with Ms. Dude: get a thicker skin. I know, it’s easier to say than to do. I need a thicker skin too, but give it a try and keep on keeping on.
I’m working on it Tracey. Believe me…I’m working on it. I was always jealous of people who just didn’t give a rats ass what people thought of them. I’ll get there…maybe.
I got my thick skin growing up in Jersey. And being a Pastor’s wife (talk about everybody having an opinion on you). Now I am basically unaffected, and unembarrasable (that’s a word … b/c I said so). But how did I get there? By hanging out and getting support from my Jersey friends, other pastor’s wives, and people in general who ALSO didn’t give a rat’s ass about what anybody though. I think some of the folks on here might be able to help you with that by coming to your defense. Maybe find some tough people to hang out with. Or watch some episodes of Jersey shore (those kids are dumb, but talk about not caring what anyone thinks … damn).
The only thing I don’t like about your website is that it makes me do math every time I leave a comment. 😉
Just trying to keep you on your toes JG2. And yes…the Jersey Shore folks…that’s what I’m talking about. They’re an embarrassment to society and they don’t care. That always amazes me.
Seriously … sometimes it’s good to care at least a little about what people think. They aren’t really people anymore … more like caricatures. Now I’ve probably offended someone for being too snarky. Darn.
This is my first visit to your blog. I haven’t quite figured out yet what I am allergic to (wheat definitely, gluten remains to be seen, though I have completely removed it from my diet) and have been looking for new recipes and advice, etc. I found a link to this post via someone I just started following on Twitter today.
Once upon a time, I was interested in raw foods. In my quest for information and community support, I saw much of the behavior you described happening in the various raw forums. People would post what worked for them, inevitably several people (who take themselves too seriously, imo) would come along and bash them because they somehow mistook a personal story or a passion for “my way is the superior way, your way is wrong” judgment. Those people just come with the territory and there is nothing you can do about it. It’s hard, but try not let a bunch of overly-sensitive, unhappy people rain on your parade.
Just be you. If people don’t like you or your blog, they can go read one of the eleventy-billion other gf bloggers out there.
I’ve added you to my Reader and I’m looking forward to reading more.
I wish you well. 🙂
You’ve got yourself a new Twitter follower…thanks for the support.
This blog has helped me a TON! I live in a very rural area with no local resources for Celiacs. Reading Gluten Dude’s blog has helped me feel “normal” – it isn’t a happy disease. I appreciate someone speaking honestly and from the heart about the down and dirty of celiac.
I think what you are experiencing as “backlash & divide” is the marketing industry finally cashing in on the gluten free cash cow. “Everyone should be GF for health, for weight, for life” with rainbows, kittens & butterfly farts (yeah grrr). You point out how distructive this marketing is for health & the “fad-ism” of this disease. A multi-billion dollar food industry & their celebrity endorsers have every reason in the world to kill off honest opinions that cost them money. “Trust us we know best” is how most of us got in this boat in the first place!!!
It may take some time until those trying to kill off the truth come around. Look at motivations of money, sponsorship, & political standing. Do you really want to be “udi’s raisen toast Gluten Dude”?? Or butterflies out your butt chairman of protocol & politeness for the universal church of celiac correctness? Let’s just be brutally honest, you (and I for that matter) are never going to be happy & excited to be gluten free. “Gluten freedom” is a slogan to make people feel good about a rotten situation & we know it! The question becomes, do you compromise who you are & what you really feel on the alter of political correctness??
For me the answer is hell no!! I have been head patted & lied to by the medical establishment. Been frustrated more times than not to discover rice, potatos, chicken…all things that should be safe aren’t because a food company wants a government wheat kick back or a chef is too dense to understand the issue. Rainbows don’t change these facts, political correctness for someone elses delicate sensibilities isn’t who you are, & lies “for the community good” ARE NOT OK!!
Very perceptive insight about the marketing companies. Total food for thought (not sure if pun was intended or not.)
I’m relatively new to the celiac community (only five months), but I’ve been following you from the start (day 2, to be precise). The reason I’ve stuck with your blog, and not bothered reading more than a few posts from the plethora of others, is because of your snarkiness, your honesty, your willingness to open up and make dang sure that no one believes for one moment that a celiac diagnosis means that unicorns will start shooting out of your ‘behind’ (although, with some of the symptoms, it can feel like one is trying to use its horn to escape), but, just as importantly, you make it seem so utterly do-able. You don’t write fluff like so many others, yet you give honest hope.
Keep doing what you’re doing; you’ve given me, and so many others, a place to laugh and vent our frustrations, and I think you for it.
Oh, and don’t worry about getting a thicker skin, the fact that it bothers you means you still care. 🙂
Thanks very much Jacklyn…but where were you on Day 1??
Umm… Mostly indulging in self-pity and avoiding the internet, lol
Today took a lot for me to tell you how I felt. I have been feeling like I am doing everything wrong because I eat certain foods.
I was afraid to tell you these things because I didn’t want to upset you. I apologize if I made you feel a certain way. I just needed you to hear my side and my feelings.
I have been feeling judged by not only you but from others who blog about this type of stuff. I know (for the most part) that it wasn’t anyone’s intention to make anyone feel the way I feel. I know that you guys are passionate about certain things.
I respect that you and other bloggers don’t find the things I eat healthy, etc. or like the companies that make them etc. Like I told you in our twitter DM, I just don’t like the tone of delivery. Sometimes it makes me feel like I am just doing it all wrong.
Perhaps it’s just the way it’s written and/or I have taken it out of context but either way I’ve done my best to be respectful towards you and trying to be respectful of my own feelings.
There is nothing wrong with disagreeing or even challenging each other in a respectful manner. The point is and the key is being respectful and watching what and how we all speak to each other and on blogs.
You and I have known each other for a long time now. I love your passion in things but I hope you can see my side as I see yours. I hope we can all learn from this and move forward.
Thanks for putting this so eloquently, J. I have been feeling the same way.
<3 you J! You are an important part of this community.
As someone else who is a snark machine, I love coming here to read not only your posts, but the responses, too. “My celiac is not your celiac” is my new mantra (right after “step away from the Pepsi”), and even though I am not to a point on my journey yet where I can embrace an entirely whole foods diet, or try a paleo challenge, I still like reading about it.
Also, I should totally have ”celiac disease does not come complete with puppies and rainbows and unicorns shooting out of everyone’s behinds” put on a t-shirt. Can you imagine the graphic?
Keep on doin’ what you’re doin. We’re all sort of making it up as we go along anyway, right?
ROFLMAO…I love the idea of the t-shirt, that’s awesome!!!
I would buy that tee shirt, Alissa 🙂
As a fellow snarkster, I appreciate this thought and I have quoted you may times (except I say “butt” )
I would also make one that says:
Celiac–it ain’t for sissies.
also this one:
Celiac Blows ( maybe with a cute blowfish on it )
Guess I have some very “definite opinions”, too! 🙂
Love all the t shirt ideas!! You guys should go for it!
I think my updated site will need to sell T-shirts.
And every time I see the name of your website, I still laugh.
Here’s my t-shirt contribution:
Celiac SUCKS . . .
like an Electrolux
(retro house appliances = funny, right?!)
You’re the reason I’m blogging, and I think you know that! While I don’t go so far in my healing journey as paleo and ditching all my GF goodies that come from a box, you’re still one of the best (if not the best) blogs out there. Put together a group of people that have anything in common and you’re bound to have a difference of opinions, and that’s what makes it all INTERESTING. While you may not have the same thoughts as other people in the community, THAT is what makes you so damn appealing! Don’t you dare zip that mouth of yours, that’s an order!
Aye-aye captain (and thank you!) 🙂
I think you’re just great! I love the very real, this is just how it is, approach you take. I love your attitude. I happen to be a very sarcastic, snarky, love me or leave me kind of person myself. But if I’m perfectly honest, and I think if we all are, we all want to be loved.
If there is one thing in my life I truly identify as, first and foremost, it is a gamer. Being a gamer saved my sanity when I was housebound and my sole contact with the outside world was through my online friends. As a gamer I am quite familiar with being part of an online community. I have had the opportunity to see some of the most wonderfully touching moments that would bring a tear to your eye. Online communities though also bring out the worst in people. It gives us anonymity. We can hide behind a fake name and tell ourselves the people we are talking to aren’t really people with real feelings. It gives is license to say things we would never say to someone’s face. When you open yourself up online, it is absolutely vital to have a thick skin. There will be daggers of all kinds, some will cut deep and fast, some will hardly scratch the surface but leave you days or weeks later realizing it was poisoned and left a festering wound. All you can do is what every man should, listen to his wife. You need a thicker skin dude. Don’t let these people hurt you. We all need you.
Thanks Adalaide….if that’s really your name 😉
I thank you for creating this blog and look forward to reading it all the time. I have emailed you before and have received replies as to several issues that was still happening to me and never ever ever have you said that I have to do this because this is what works.
As for the people who don’t like what you have to say just overlook them. We are here to support one another not put each other down. What works for one person will not always work for others. And fortunately we have people like you that supports us and listens since we all know most medical professionals don’t – and unless you know what we are really going through you have no clue to what it feels to be in so much pain, have no engery or all the other things we have to deal with. Again…Thank you….
I agree with the above we all love you because you are snarky…..
Snarky is as snarky does. Thanks Theresa.
I received my celiac diagnosis nine years ago this March. Despite being 100% gluten free for most of that time (took me a few months to figure out the diet since I was 19 and in college living alone for the first time) it was not until I visited your blog that I felt my struggle with celiac had been truly verbalized. I have written to you before stating this but feel it necessary to say again. I have read other blogs by celiacs that didn’t speak to me or that I did not agree with. That did not lead me to speak out against them. In fact, I still read them from time to time. It just so happens that your approach to celiac resonates with me the most. I have spent most of the last 8+ years silently saying to myself: ‘This isn’t fair. This is hard. My family does not understand my struggles.’ Your blog posts about what it is like to have celiac have absolutely put words to everything I have felt and experienced. When I have not been able to find words to describe my struggles to my friends and family I have shared your’s. The things you have written have also helped me defend myself to my family, who often makes fun of me for making such a big deal about cross contamination during our meals together. I used to just leave the dinner crying and feeling different. Now I stick up for myself and my health and no longer feel badly about that.
I write this to say that your thin skin is important. For too long so many of us, like me, have thickened our skins to get by. We shouldn’t have to do that. There are so many things about celiac that suck, including the recent celebrity fetish with going gluten free. We should say something about it. And we should have dialogues between celiacs about our experiences, including what has worked for them when troubleshooting their health. What works for one may not work for another. I say continue being snarky, sarcastic and borderline obnoxious. First of all, it is hilarious and often necessary given the subject matter. Second, we need more of us to be like this so that we can stand up for ourselves and our health.
I commend you for being so brazen. And thank you for helping me become a better advocate for myself and for celiac in general.
The fact that our community has empowered you to stand up for yourself against those who treat celiac lightly will put a smile on my face for the rest of the day. Unless I get glutened of course.
This is YOUR blog. You can write whatever you want, however you want. Those that don’t like what you write can choose not to read it. People come and go from our lives all the time. Change is the only constant. I will continue to read your blog until I no longer do. And life will go on…
Personally, love the snarky am guilty of it myself.
One thing I have found interesting is when people get all over you about what you are saying, or how you are saying it it reflects how judgmental THEY are. Nothing to do with you really, but get bashed enough and your skin thins alright 🙂
You are just fine as you are, and certainly not judgmental, or a “my way or the highway” kind of person in my experience.
I have posted things that you do not agree with in the past, and you openly disagreed but let them stand as your comment was “if it helped you it might help someone else” or words to that effect.
One thing we do agree on is the GF fad happening – not good for those who are truly ill, and I like you standing up and saying it!!!
Thanks for all you do, and do not stop doing it or being you!!! We need you out here 🙂
“One thing I have found interesting is when people get all over you about what you are saying, or how you are saying it it reflects how judgmental THEY are.”
I love when people think outside the box. Thanks Joanna.
” … Is life not a hundred times too short for us to stifle ourselves …” ~Friedrich Nietzsche
Keep on keeping on Dude! You make us laugh, and you make us weep! Don’t change a thing. Having said that, my mom gave me some good advice early on, sometimes, especially when ranting & raving with people we most care about, it is best to preface our thoughts with “in my opinion”…. 🙂
p.s. I agree completely with others that you have made it clear in your BLOGS that what you write is your opinion and what works for you may not work or appeal to others .. just wanted to clarify that! I still stand behind my suggestion for prefacing “in my opinion” in friendly conversations (& perhaps you do!) as I believe it makes an opposing opinion just a little easier to digest …
but that’s just my opinion 🙂
What a wonderful outpouring of support via these posts for you Dude!
Ditto with what Sue wrote. I don’t twitter, so I don’t understand why you have been “pierced” by some fellow celiacs about anything. Maybe this form of communication is too spontaneous, too knee jerk.
I would definitely ignore these people, b/c you have helped so many of us out here suffering. You have made us laugh, and made us know we are not alone.
I think it is ludicrous that there would be a divide in the celiac community. Whaat, is this the trend? We can choose not to follow it, be an example for Washington, D.C. perhaps.
We have celiac disease we are in this together, lets help each other.
Dude keep it going, ….thanks!
Thanks Aloha. Yes, I despise getting pulled into a public Twitter fight. It’s happened a few times and it’s just so childish on my part. Now I take any disagreement someone may have and do it privately via DM.
Still childish perhaps, but at least its private 🙂
At our Phoenix GF dinner last night, we all talked about what an incredible job you’ve done of creating a community where we can come and vent, cry, scream, encourage, and lift each other up. THAT is what you are doing, and anyone who can’t see that needs to stop reading your blog and move on.
Personally, I would be a flipping mess without you and my GF tribe. Be yourself, we need you.
Hi Gluten Dude,
Just wanted to express my appreciation for your blog, sharing your story and opinions and your honesty about living with Celiac Disease. When I was first diagnosed 3 years ago I was on top of the world to find a reason and explanation for why my body was so sick. And, I was under the impression that as long I ate “gluten free” foods that I would be okay. I was totally wrong.
Through your blog, and Jennifer’s Way, and so many others I have learned so much about Celiac Disease that I wish I would have known back when I was diagnosed. Celiac Disease is not an easy disease with an easy treatment. As a Celiac who is very sensitive to gluten contamination I have had to work very hard to maintain my health.. I am grateful to know that I am not alone in this and that for many of us, just eating “gluten free” foods is not enough. I am appreciative to the community you have formed and am grateful to be a part of it. We all need to vent from time to time too!
Thank you! I hope that your journey toward growing thicker skin goes as well as possible.
“I was under the impression that as long I ate “gluten free” foods that I would be okay. I was totally wrong.”
So many of us were Jess.
Personally, I don’t think someone with a gluten free readership as large as yours should be perpetuating the stereotype of the person without a “proper” diagnosis of Celiac Disease as someone who will consistently cheat on the GF lifestyle. In case you’ve forgotten which article we were discussing, it was http://thesavvyceliac.com/2013/01/22/downsides-of-the-gluten-free-trend-not-tested-for-celiac/comment-page-1/#comment-62735
Lisa…if you’ve read my blog, you know that is NOT where I stand at all. I have ALWAYS said when I talk about celiac, I am talking about all of those with gluten related health issues who cannot eat gluten.
I retweeted her post because I thought she made some good points and I did not read it that non-diagnosed celiacs cheat.
You did not say it, but it was written in there that that can be the case. Those who don’t know, maybe should, ie maybe a gluten challenge ? and that way “they” will take their diet more seriously.
It is definitely something some might do not “knowing”, but not all.
For anyone pissy about this, it says “If you are eating gluten-free as a trendy/fad diet and unknowingly HAVE celiac disease (remember 1.4 million Americans don’t know they have it), but you forego being tested for celiac disease, there could definitely be some complications:” and then expounds. That is aimed not at anyone with a medical need, but exclusively at the fad people, the people who think it is hip. If you read the whole article without getting your panties in a knot, it goes on to explain that there are reasons not everyone can be tested, and that is okay. And that not only that not only medically diagnosed celiacs own the gluten free diet.
The whole article is about how being gluten free as a fad or a trend is harmful, possibly to the person doing it. It has nothing to do with those who are gluten free for medical reason without diagnosis. You’re reading things that aren’t there if you think it does.
Yes, it says that now because it was changed by the author after some of her readers had complained.
But I didn’t write it. I simply retweeted it because I thought it was an interesting read and your acting like I was its author.
I simply don’t understand the anger towards me on this one but I just need to let it go.
The point is you retweeted a post that lumped people who went gf as a health measure but without an official CD diagnosis in with people who are going GF as a fad diet, making it look as though you were in agreement with the author that those who didn’t have CD officially cheated and made it harder for people who actually had a doctor’s diagnosis. Then you take a private conversation and turn it into a blog post to gain support for your side of the conversation without even coming clean with what the conversation was about. And you wonder why some of your readers may have lost respect for what you have to say. smh
Oh, and just to be clear, I did read your blog ever since I discovered it last year, so I know what you’re “supposed” to be like, which is why I asked for clarification on the RT in the first place.
Life’s too short Lisa. I’m bowing out of this one. I wish you nothing but health and happiness.
I follow a few blogs related to celiac disease and gluten free living. The main reason I follow yours is for info with a healthy dose of sarcasm and snark. I love reading the comments – I frequently get additional info (and laughs) from them. It helps to know when there are new products to watch out for – either good or bad. It’s good to know what other people are finding out from their doctors, and their life experiences.
I love that you give people a place to rant. My family gets tired of hearing me rant, so I’m sure others have that problem too. Having this forum to rant and get feedback on how to deal with clueless people is awesome.
I follow other blogs for recipes, quilt patterns, rainbows, kittens and unicorns. And I don’t tweet!
Keep snarkin’ on Dude! That’s what I come here for!
The comments are usually much better than my blog posts. What does that tell you? 😉
Gluten Dude, you are doing a stupendous job! If there are some who now no longer connect with you, as naturally happens in relationships, then that is simply an organic and healthy process of growth and change. Like a snake shedding its skin. You’ll be gaining new ‘followers’ and friends and devotees as others fade away. You do so much good with your blog, and things evolve, as they should. I don’t think you need a thicker skin per se; just a realization that people come and go, and it’s sad sometimes but it happens. It’s so difficult, and brave if you’ll allow me say, to put oneself out there and get criticism at times. Your work here is too important to feel let down for long. The negative won’t just roll off your back like water on a duck, so keep in mind how much you are needed here, by people who are grateful for your knowledge, humor and courage. Keep on truckin’ Gluten Dude!
Sound, common sense advice Denise. Thank you!
Ive followed you for a while now and have enjoyed some good laughs. I especially liked your Ecard about the cowpie 😉 I did find it hard to appreciate and understand your all your posts for what they were because I would feel sad at times wondering if you understood That mine and many others method of coping with this celiac diagnosis Was to focus on the good that has come from it and they joy that can be found. I know for me, focusing on the hard things that come with it was just not an option. Whenever I let myself do that, it consumed me with sadness and despair. My only coping option was to focus on the good and to truly find ways to celebrate my diagnosis. This post has helped me to see that you do understand that each coping method is different and that you appreciate that. I teared up when I told my husband about your post as I have felt that divide amongst our community between those who candidly talk about the struggles that come along with it and make their mission to help others feel like they are not alone and those who are focusing on the good and positives that can and will be found through diagnosis and help others do the same. Both of these topics are important for our community and require different personalities to shine light on them. As founder of the Arizona east valley celiac disease foundation chapter I have had the incredible blessing of embracing new individuals diagnosed with celiac disease every month and see the great need for both-understanding they are not alone in their struggles and finding the joy that can be found through diagnosis. I thank you from the bottom of my heart for bridging this unspoken gap in our community through this post. As I write this with tears in my eyes, this is one of the days in my celiac journey that I am grateful for people like you who are taking the opportunity to unify and work together to make this community truly one. I look forward to this new balance and direction in our community and to see the joy it will bring to make us all feel as united. Truly understanding that each person copes differently and we must love and accept each for their role in our overall community. Thank you Gluten Dude for this compassionate and genuinely caring post. We are one united celiac community and this post helps us get so much closer to understanding that.
I appreciate it Chandice (and I love your name)…
Thanks Dude, I’ve enjoyed it so far 🙂
DUDE!!! You have NEVER claimed to be perfect. You have ALWAYS been very up front with the fact that you can express whitty sarcasm sometimes, and you NEVER judge unless it is due, and it is to defend us celiac’s. WOW If I had to guess, someone got their feelings hurt because the truth does hurt sometimes and can be hard to swallow…I happen to be a super sensitive person and have NEVER felt you were out of line. I love your blog due to the fact you are honest and human and you share real life events with perfect strangers like us. You are truly a God send to me and im sure many others. I too have been dealing with this dreaded disease over 5 years and it is nice to know I am not alone. Please dont take my therapy away… LOL, I thank you for all you do for us. If someone out there in our cyber world doesnt quite get you or get what you are really about, I think they should not subscribe to you. Maybe they got glutened LMAO and thier other personality came out. IDK Just wanted you to know for the majority of us you are a true blessing. Keep up the great work and do not change a thing. We love you DUDE 🙂
I’m not going anywhere Momma. Thank you!
Gluten Dude, you have helped me immensely. I was newly diagnosed in late June of 2012. Navigating through the Celiac waters was difficult at first—and it is still difficult at times. I hate it that I have this disease and will NEVER like it, but I stay on the diet for my health. It is becoming second nature for me. I love the honesty you put out there because that’s how it really is. It’s a bummer because we no longer “break bread” with family and friends like we used to. That makes us stand out. In the old days if one did not bread bread with someone, that person could be considered an enemy. We are freaks of nature and once I realized that, I really knew that I was basically alone. The way you present yourself actually brightens up my day because I can LAUGH. Laughter is the best medicine. Sometimes one needs to rant and say “Fuck you I have Celiac disease!”. And if one seems judgmental towards someone or something, maybe that person had it coming. People have a hard time processing anger because its well—scary. So many sites want to put out rainbows and sunshine and maybe that’s a good thing, but we need the other side also. Keep it up, cause I would hate to see you not do what you do for us.
I’m running out of ways to say thank you…time to hit the Thesaurus.
No-one needs to buy a gluten-free cookbook. There are blog after blog about how and what to cook… recipes, instructions, shopping lists abound all over the place.
Your blog is different. Its about all the other stuff that goes along with Celiac disease. From problems getting a diagnosis when there’s no medical insurance to problems getting a diagnosis when there is unlimited medical insurance. Basically, this blog is the only one that shares the day to day frustrations of living with this disease.
Yes there is some division in the celiac community. Division over whether or not the recent increasing abundance of gluten free foods is a good thing. Division over attitudes, perspectives and recently it seems some division over how serious this disease is (‘my celiac is not your celiac’). I’m grateful for your work on this blog bringing these issues up. And I accept that you have an opinon on these matters too. I understand snarky is how you express those opinions sometimes and some people are put-off by it but frankly, would these topics be as interesting to read without the snarkyness?
Celiac by itself could be kinda boring. Add some snark to it and it’s a whole new ballgame 🙂
I agree with Mrs. Dude 😉
You “do” good. 🙂 Period.
The problem with snark is that it can written to read one way, and be read in another way. That’s always been the case with emails and such. But anyone reading more than one of your posts can see where you’re coming from and quite frankly, if they don’t like it they don’t have to read it. That’s what blogging is all about. Keep it up for the people you are helping and don’t worry about the rest. They’ll find someone who does make sense for them in the way they want to hear it.
Dude- I don’t think that you are dividing the Celiac community at all. I think, in fact, that you are bringing more of us together. Your blog is fantastic because you are TRUE TO YOURSELF. I don’t want to read the blogs that are tame or neutral or wishy washy. I enjoy your forthright approach and your honesty. I wouldn’t change a thing.
Your blog is extremely validating. We have good days and we have bad days and out in the world it feels that you are always supposed to have a positive attitude and a smile on your face. Your blog is a haven to feel what I’m feeling. On days that I’m up, I try to lift others up and on days when I’m down, your blog lifts me up or at least gives me permission to feel what is real and move on. There are definitely no unicorns or rainbows at our Celiac household, but your blog does spread a great deal of sunshine on a regular basis.
I’m not going to tell you to not care about the people who have disappeared because God knows that I still care entirely too much what others feel about me, but please know that I’ve never sensed a divisive theme to your blog. You have educated, entertained, inspired and validated me as a fellow Celiac. Food blogs are a dime a dozen but I love your blog because you write about the disease and everything that comes along in that horrific package.
A thicker skin is something that has been on my personal wish list for a long time so let me know where you pick one of those up! You are a Celiac Rock Star, and never forget it!
ThickerSkin.com? IHaveNoSelfConfidence.com? ImLame.com?
Random thoughts –
1. I love this blog and not just Gluten Dude. I truly appreciate how everyone shares their thoughts, their things that work for them and their things that don’t work for them.
2. I love how I don’t constantly feel alone when the right side of my rib is burning.
3. I love that most nights as I go to bed, I can say “one more day of healing…” ( thank you Irish Heart)
4. I love that this blog is NOT so sweet I get a toothache just reading it.
5. I love the candid attitudes of all the people who post and that there are healthy and direct conversations going on where I want to see what people are saying and thinking regarding Celiac health and Celiac “other” medical issues.
6. I love gaining knowledge from this specific blog and how lucky I am to take away things that me stronger, healthier and happier.
7. I love that even though I have not met any of you in person that I still think of you often and feel supported in my journey towards being the healthiest me I can be!
8. I think you are all INCREDIBLE people – I even like the ones who don’t like us. I even like “IM” – he cracks me up and I always – always leave this blog lighter hearted and with a smile.
9. I love the sarcasm. In fact, I would probably go find a different sarcastic blog if you decided to go politically correct… LOL!
Gluten Dude – I say don’t change anything! If someone is offended, they should contact you offline or online and make sure they understand what you are saying… most of the time wires are slightly crossed and it is all just a misunderstanding.
Could not agree MORE with eveyone saying be true to yourself!
Appreciate the thoughts Camille…
GD: You once wrote a post that annoyed me.
Once. Out of I don’t know how many posts you’ve written. And it was my interpretation of the post that made me feel that way.
So I put down the mouse and picked up my trusty bag of plain potato chips and had dinner. Because what works for me isn’t something I would advise for anyone. Myself included. But for me, it works.
I come here for advice, a shoulder to cry on, lots of laughs, and plenty of diverse opinions. Oh, and to bitch about the people who make it “ok” for a restaurant to say to me, “Do you want the regular menu, too? Some people can’t find anything they like on the gluten free menu, so they order off the regular one”. UGH!!!!! But I was polite when I informed the staff person that even if there wasn’t anything I liked on the gluten free menu, I would still order from it, because the alternative was a night of pain.
We need you, GD. We need someone who is willing to put himself out there and shout about the idiocy of people who claim to need to be gluten free and then eat the bread!
Rant over. Thanks for listening – and that’s another thing I can count on here… you will listen.
“Because what works for me isn’t something I would advise for anyone. Myself included. But for me, it works.”
Like I said…we each need to find our own path.
“I am out here for you. You don’t know what it’s like to be ME out here for YOU. It is an up-at-dawn, pride-swallowing siege that I will never fully tell you about, ok? Help me… help you. Help me, help you.”
Amazing. After all you do to help people. YOU are not the one who needs thicker skin, think it might be the other way around. Time to shake off the haters.
JG…you warm my coggles 🙂
Hey GD! I love your blog. My two-year-old was diagnosed a year ago after and emergency surgery, and it has been a tough year to say the least. I have found it a challenge to feel my 1, 2, and 4 year old kid-friendly, gluten free foods that don’t break the bank. Your blog has helped my to understand my little guy a little better. My only suggestion to you is that you do not discount any Celiacs who are “all about the food.” You said that one time about Elizabeth Hasselbeck. I really didn’t follow her before last year, but in my house, it is a lot about the food. I feared that my son Luke would be destined for a life of tasteless, weird food from the tiny gluten free aisle, but I have come to appreciate individuals who’ve done enough gluten free “experimenting” so that the rest of the Celiac community doesn’t have to settle for total crap and can start enjoying the communal aspect of eating again. I just commend you and any Celiac with a strong voice who can educate people about the disease and teach people about delicious gluten free foods. Because of people like you, Jennifer, and Elizabeth, hopefully the public will be more educated about gluten free (not just “wheat” free) living.
I just recently found this blog and it’s my second favorite blog ever! (My first is “People I Want to Punch in the Throat”). So obviously, nothing will ever be too snarky for me personally. My daughter has celiac and I’m gluten intolerant and we are both SO LUCKY. If something is cross-contaminated we have NO REACTION. If we get accidentally, minutely glutened we are not sick for days. But some people are. And no matter HOW your body reacts, we’re all in the same boat. My mom sent my kids a ginger bread house kit (not gluten free) when she was really little. I was so pissed off … I threw it out. What kid wants to make a freakin’ house they can’t EAT. It’s nice to be able to swap war stories about our friends”and familes’ attitudes.This is a great place for people to be able to vent, rant, commiserate when other people don’t understand. And I think you are hysterical. It’s your blog and it’s entertaining, so write away, don’t get discouraged. If you have naysayers ignore them or do what I do and tell them to (insert Jersey Girl response here … use your imagination).
Also, Jennifer E. you are super brave and awesome, and Dr. Drew Pinsky is a (insert giant Jersey Girl rant here).
Sometimes I get irritated by what I read here. I know I annoy people some of the time.
We’re all different in the way we deal with our CD. It’s especially interesting to get the view from across the pond.
I don’t quite know what to make of the current fad for gluten-free eating. On the one hand, there is a much wider variety of food in the free-from section (good). On the other, the ones who choose the diet (rather than the diet choosing them) are apt to break the diet, which simply confuses restaurant staff (bad).
And you’re not the only one telling your story here, everyone who comments puts in their twopen’orth. On the whole it’s good, so please keep going.
I should also make clear … even though my daughter and I won’t be gawd-awful sick from cross contamination … we eat like we would be. Celiac means no gluten … ever. And we know that if we are cavalier about it, that someone else with a higher sensitivity could become seriously ill. So we are lucky, in that we don’t have to live in fear … that if a mistake is made we won’t suffer like some others do. But we take it very seriously that people, stores, restaurants, (hell, even some doctors), etc. are already confused, and make sure that we don’t muddy the water. Although I have given up yelling at my mom for crumbs in the butter the two times a year I see her. I just get two butters. Sigh.
I have to say that a lot of the division I see in the Celiac community is the fault of doctors. Doctors tell their patients “it’s Ok to eat in risky situations because they are not very sensitive.” Of course that is wrong. Whether the little bit of gluten someone gets from eating at fast food or peeling cheese off a pizza makes them feel bad, it is doing damage.
Another “divider”I see is the people who believe everything they read on the Internet & the people who love to spread it. Some benefit from it by selling products & books. Some just seem to get a kick out of causing trouble. Thus we have the stupid myths that envelopes have gluten and tea bags are sealed with wheat paste ( which would dissolve in the hot tea water and the bag would fall apart) and that there are pills and odd tests with no scientific basis that will cure us.
Lastly, 90%. ( unscientific guess) of Celiacs go about their merry way and never read GD, or C.com or gf logs, etc. Posters on the Internet are a sub- set of all Celiacs, so don’t let a sub- set of them upset you.
Bean is very wise 🙂
Yea, but, in that last paragraph the “B” fell off and now I’m spreading the thought that all logs are not gf. :0
LOL!!!! Gluten Dude and I just got a huge laugh out of that one!
Lima. Bean is a very funny person.
She could do stand up in clubs in the Midwest if she could just get past her stage fright.
I came across your website 14 months after being diagnosed with Celiac Disease. I sincerely wish I had come across it sooner, my life would have been better, much better.
You are NOT dividing the celiac community.
Someone once said ‘A great many people mistake opinions for thoughts’.
Having an opinion is important; respecting each other’s opinion(s) is far more important.
The caption of your site is ‘The naked truth about living gluten free’. I sincerely appreciate your hard work and dedication in keeping it real, ‘naked’.
I come here first thing every morning for several reasons ; to read and realize i’m not alone in this, to get the latest update on celiac community, gluten free living; to put things in perspective. You’ve helped me, and I’m sure many like me, in ways you don’t even realize. The ‘gluten dude community’ has helped me through some rough times, made me laugh, cry, ponder and helped me evolve.
Of course, there are times I don’t understand your sarcasm, or humor – but that’s not on you. Not everyone has the same sense of humor OR for that matter take on life. [Can you imagine if we were all the same?That’d be so boring!]
You provide a platform for people worldwide to share their thoughts, feelings, opinions & above all else – their life experiences. That’s p.h.e.n.o.m.e.n.a.l. Believe it. You can’t make everyone happy, no one can. There will always be someone who disagrees, the challenge lies in continuing your good work despite the many obstacles that come your way. [And you’re already doing that, and then some more]
I’d like to part with my experience from today: I attend my first ever Art of Living Class about 2 hours ago. This is what the speaker had to say ‘As human beings it is in our nature to exaggerate the negative and suppress the positive. When we realize this and accept it, we can work towards changing it. We can evolve as human beings.’
With heartfelt gratitude & best wishes,
I am a faithful follower of yours and will continue to be so – whether there is a divide in the Celiac community or not. What I have learned is that when you get a large group of people together – there are always bound to be differences of opinion and disagreements. The hope is that everyone will ‘agree to disagree’ and move on like adults. Some, however – will never be able to do that. You don’t need friends, colleagues, or even blog or twitter followers who can’t handle you just being yourself. That is what I truly admire about you & your blog – you’re real. You just say how you see it…say how you feel… and there is absolutely nothing wrong with that. I do understand though, as I am quite sensitive by nature and take what others say to heart as well. But, try to listen to those that are true to you and absolutely believe in the huge benefit you are providing to the Celiac Community through your blog. You were the first Celiac blog I could really connect with… and I will be following for as long as you blog.
The first time I read you blog I got a good belly laugh. It was just what I needed – someone who really understood and made me laugh at my situation as a celiac. Prior to the blog I hadn’t articulated some of these feelings and opinions. Other times, I’ll read some of the blog and skip it because it is not relevant to how I’m feeling at the time. What I’d really hate is to not have the blog to peruse and read or not as I choose. You can’t please all the people all the time Dude.
If you quit, I’ll quit. I mean it.
Here’s what I learned about being vocal—you’re always going to have “haters” or be criticized. Does it hurt? hell, yes. But it does not prevent me from doing what I love to do–helping other celiacs in any way I can.
Who says you’re “dividing the celiac community”? How so?
Why aren’t you entitled to say whatever you want?
Maybe this sounds naive—- but isn’t that why blogs were invented?
Let me guess….Is this because you said “don’t eat GF packaged foods”? So what? It’s your opinion based on what works for YOU. You always couch your blog posts with that disclaimer. I know I “IMHO” myself silly when I say anything ever since I was bitch-slapped months ago by some people . I’ll tell you what I was told by my hubs and my friends back then: IGNORE THEM.
You know I always say “celiac ain’t for sissies”–well, neither is being an honest (and sometimes blunt) celiac advocate. I have my share of “haters” too, BTW. It is unfortunate they do not like me just because I tell the truth, but I refuse to let fear mongers infect the newly diagnosed with their paranoia.
If it matters, even if we ever disagree strongly on a subject, know this: You’ll still be my friend and I’ll always defend your right to say what you think.
Dude, you make me laugh.:) From Day 1. I would be very sad to see you give up spreading the truth about celiac in your own unique fashion. Let’s face it: Your blog is where so many people who ordinarily do not like to complain or bitch can do so—safely and without judgement–have a good laugh and then, get on with their lives.
I have told you many times: “you do good work, kiddo”. Don’t let anyone’s harsh comments take that away.
If you and IH scraped all of this, I would be lost!
Dude, are you listening to all of us? It reminds me of the movie, “Its a wonderful life.” Where everyone is praying for George, you can hear all of their prayers…..
Yours is the only gluten-free blog on my RSS feed – the rest (about 40+ of them) get checked occasionally. You are spot on in your pissed attitude toward the challenge of living with celiac disease. Your compassion makes a difference. Your constant refrain of “This is what works for me, it may not work for you, we’re here to help/support each other” – of you had a dollar for every time I’ve read that in your blog, you’d be able to ________ (fill in the blank).
I’ve been diagnosed and living with celiac for over 20 years; am just recently eating more towards whole foods-paleo and noticing an improvement. Tried it because of what you wrote. Thanks – keep up the good work!
I’m pretty convinced that the people who get offended by your blog are this woman and her friends: http://www.theonion.com/articles/area-woman-offended-for-fourth-time-in-one-day,370/
that is a hoot! Esp. b/c those things happen to me all of the time, but I never write about it! just kidding.
thanks for sharing, puts everything in a better perspective.
Gluten Dude – i stumbled accross your site last spring and it was just what I needed at the time as I had just been diagnosed. Keep up the good work and keep educating. I am surpised at the amount of ignorance today about celiac given all the media attention (mind you, most of the attention is misinformed and condescending. ) Thanks for what you do from Ontario Canada.
Gluten Dude – i stumbled accross your site last spring and it was just what I needed at the time as I had just been diagnosed. Keep up the good work and keep educating. I am surpised at the amount of ignorance today about celiac given all the media attention (mind you, most of the attention is misinformed and condescending. ) Thanks for what you do from Ontario Canada. help as
I have two thoughts:
-If you’re doing this to get a lot of love, your narcissism is running the blog and you should rethink why you’re doing this.
-If everyone loves you – you’re doing it wrong.
Fortunately, I think neither of these is true. Even if I don’t always agree with you, I do think you write with passion and heart and you really are trying to help yourself and others go through the GF journey. I don’t read your blog and Jennifer’s blog for the Polyanna view of the world – I read it for the practical, interesting thoughts of two people I respect, and in your case, your blog also has the best commenters I’ve ever read anywhere.
Bottom line: It’s your blog…. it’s for you to state YOUR feelings and opinions. This isn’t a medical journal article. Thanks for making me laugh… even if you are sometimes a little snarky. 😉
I am new to this. I may be Celiac. I may not be. I haven’t been tested yet. I was happy to find your blog, to find a male perspective so maybe I had a chance of having my husband join me on this journey with a minimum of grief. It was one of few blogs I continued to read. But, I’m about 6 weeks in and I realize that every time I read it I feel ‘less than’. Like I am not worthy of eating gluten free. Like I am not as worthy of expecting that my food is 100% gluten free when I ask for that. Like I should be punished for searching for ‘gluten free food’ more often than ‘celiac food’. I feel less than because I can’t tattoo ‘celiac’ on my arm. Yes, I’m still reading but every time I start I take a deep breath and feel like I am stepping up to be punished. I want to learn. But I don’t want to feel less than. I would understand if you are bitter about being celiac, can you try not to be bitter so much about people that may be gluten free in a different way? Believe me, we would all be happy if gluten free meant 100% gluten free even if there were different reasons or names for why that has to be.
I simply don’t know where this comes from Melissa. I rail against those who go gluten-free when they don’t need to. That’s it. I do not differentiate between celiacs and those who have health related gluten issues who have not been diagnosed. Celiac is not a badge of honor I wear. And I am not bitter. I just don’t enjoy it.
I never thought that you, GD, ever had a propensity to favor (for lack of a better word,) those with celiac or those who are sensitive or intolerant. I’m not sure where this is coming from either.
This is perplexing. Let it be known, that GD does not have a “thing” about people who are not diagnosed with celiac disease. He cares about you whether you are celiac or have horrible issues with gluten.
He wants all of us to feel better, and his journey has helped allot of us.
I kind of understand what Melissa is saying. I read your last blog post (the one before this) and was a little confused, because it came off like you were lumping people with NCGF in with the fad dieters, but then you had disclaimers saying that you weren’t. So I just chalked it up to your writing style and moved on. Besides, I’m not the kind of person to raise their pitchforks just because someone has a different opinion to me! I’d just stop reading your blog. 🙂
I’m in a tricky place. I know something’s seriously up with how my body responds to some foods, but as I have severe, treatment-resistant depression, an anxiety disorder, and a history of anorexia nervosa, no one will take me seriously. Especially when it comes to food. My psychiatrist actually thinks I may have an auto-immune condition compounding my depression as (a) even when my mood improves somewhat with treatment, the symptoms of fatigue and foggy-headedness remain and (b) I’ve also got atopy, various apparent food intolerances, and an IBS “diagnosis” (my doctor refuses to run tests that would rule out any other conditions). But I’m just so damn sick of seeing doctors only to have them dismiss my symptoms.
Interesting fact: it is now known that anorexia can be triggered by malnutrition in people with the genetic predisposition to develop the illness. Now, what triggers that malnutrition is another thing entirely, but it does make one go hmmm…
I don’t know why I’m telling you all this. Oh wait, now I remember. If people see me pass up bread and pasta and ask if I’m gluten free, I tell them, “look, I have problems when I eat these foods, but as I haven’t (yet) been diagnosed with anything, I haven’t gone completely gluten free. There are however people with diagnosable illnesses who can’t be so cavalier with their health and diet”. I thought hearing this might make you feel better. 🙂
From what you write here, your symptoms are indicative of celiac and if your doctor refuses to run tests, perhaps you need a new doctor. Please, hon–get tested. and even if it is negative, gluten often causes all these symptoms.
Your psychiatrist can run the celiac blood panel.
If your depression is resistant to medications, it could very well be because of the underlying malabsorption problem. Eating disorders can arise because people are leery of eating –only to feel sick each time. I never would have believed that about myself as I once weighed 215 lbs. Celiac caused malabsorption, a rapid 90 lbs. weight loss, hair loss, physical pain you cannot imagine and a pseudo-eating disorder as I had no appetite and everything I ate made me lose foods both ways. I viewed food as repulsive. Me–a major foodie and gourmet cook. Things tasted metallic and my mouth and GI tract burned. Anxiety and depression and insomnia set in. Multiple vitamin deficiencies made things worse. I am a very happy person and this was just so bizarre. It was celiac. Off gluten and healing, I eat with gusto, have NO anxiety or depression, and all my vitamin deficiencies (and there were several) are resolved.
Please call your doctor’s attention to the following Pub Med articles:
Just one of these articles states:
“Coeliac disease should be taken into consideration in patients with psychiatric disorders, particularly if they are not responsive to psychopharmacological therapy, because withdrawal of gluten from the diet usually results in disappearance of symptoms. In recent years, an increased incidence of subclinical/silent coeliac disease has been reported. Psychiatric symptoms and psychological behavioral pathologies could be the only clinical manifestation of coeliac disease, but the epidemiological aspects need further investigation.”
I hope you get some answers, hon. Best wishes.
I think you are simply putting that onto yourself. At no time (and I have gone back and read every post) has GD ever put down anyone who has a need to be gluten free. His issue has always been the same as many, the same issue I have, which is with people who treat this as a fad. Who think it is a joke. With asshats who tweat about going gluten free then about eating bagels an hour later. He uses the word celiac to lump together everyone with a medical need to be gluten free, which he had pointed out in the past. If every time he said celiac he said celiacs and every person with a medical need to be gluten free we would all get sick of reading that, it would be tedious.
I feel terrible for you that you are suffering, but it isn’t because of anything GD said or did. It is because you took it the wrong way, out of context and haven’t taken the time or effort to examine that or ask about it. If you medically need to be gluten free, you are one of us and all of us, GD included, will welcome you with open arms. It is the fad dieters and the sort of gluten freers that he and many of us take issue with. If you are feeling less than, blame it on gluten head, blame it on withdrawal, blame it on a misunderstanding, and stop. You’re here because you need to be, not because you think it is cool to not eat bread. Be one of us!
Well said, Addy. I have never seen the Dude be exclusionary regarding celiac/NCGS and I have been reading this blog for nearly a year. As for people who just “dabble” in being GF —I share his disdain, as it does make it harder for those of us who need to be taken seriously. I get eye-rolls and loud sighs from waitstaff because they think this is just a big joke. It’s not. It’s my life at stake.
You mention you are gluten free for 6 weeks, but you have not been tested yet. You need to be consuming gluten for the best chance of an accurate diagnosis. I hope you can see what we are saying because this is a very supportive community on here–one of both celiacs and NCGS peeps and their families–together.
I think you’re awesome. Celiac Disease means something different to all of us. However, the common issues are things like – not being paid attention to, wrong diagnosis, bad food, ugly comments by those who think they ‘know it all’ by certain members of the Celiac Community etc. There’s many issues surrounding Celiac…but one that I’m very concerned about is this. http://www.ncbi.nlm.nih.gov/pubmed/19302264
I own and operate my own business in the entertainment field. I, like a host of other celiac’s MUST perform daily, even when we’re having some extreme health issues. People with Celiac are vastly misunderstood and I think we’re a little tired of it. My hours range from 12-18 hours of work a day. Can’t change it unless I dump the business. And to be honest, it’s all I have left. Celiac Disease broke my family and myself in many, many ways. So GD, you rock and keep on rockin’!
You’re an inspiration and to hell with those who think that not venting is the way to go. Vent til the cows come home!
This is one place i DON’T feel “less than”. I feel normal when i read your blog. I feel I’ve found a place where whatever i’m feeling is ok, whether that be happy, sad or pissed off…it’s all ok here. There are many sites i don’t feel comfortable posting because I’m not a diagnosed Celiac, but not here. Here i get to commiserate with someone who’s as frustrated as i am that they are limited to the small selection of GF beer and can’t just have an f-ing Blue Moon (or other) anymore!
Please keep up the good work. Your blog has truly helped me and i appreciate it.
Positivity doesn’t mean flatulated unicorns and refracted light, it means a creation of energy, engagement, optimism, and interest in improving a condition. This is a positive place you’ve created, Dude. You provoke thought and solicit input and information.
The overall feel is optimistic, yes, even with the snark and celebrity pokes and the ‘naked’ truth about celiac disease!
Ok, who am I kidding, the snark and celebrity pokes reeled me in. Once I stopped laughing at Kim K.’s ass, then I saw all gluten free goodness gathering here.
I’m not sure I have any suggestions on how to be a better advocate for us because I feel like you are letting us be our own advocates! We’re all so different but I’ve yet to feel pressure to conform to anyone else’s celiac survival plan.
So when the haters start to hate, just keep your chin up…
… and pull out your best Bluto impression!
I’ve only been part of your community for a short while but it already feels like it’s been years. Everyone has a different approach to dealing with things and you can’t always make everyone happy. People have to choose for themselves what they want to believe and accept. But I think from all the above responses, you know for sure that there are tons of people out there that respect you and appreciate what you do :).
The snarky comments make you smile on a bad day. The harsh comments make you man up and push through what you need to. And the comforting words always make you feel better especially knowing that there’s someone out there that has more experience and understands.
Every celiac needs to decide for themselves what works for them but there’s no harm in sticking together as a community to help reduce all the misconceptions of this disease.
Keep up with the awesome work and Thanks :).
Hi Gluten Dude,
This is the first blog – and one of the only blogs that I’ve actually been able to share my thoughts & some of my story (aside from Jennifer’s Way). And I was diagnosed a decade ago… In fact, I rarely open up about my struggles with anyone. My only regret is not having found this sooner. The only thing that ever brings me down on this site is when someone rips on you for not sugar coating a situation or an issue – or taking something way too seriously. Who on earth sends hate email to a blogger?? Nevertheless, even when someone gets pissed off with you, you still allow them their opinion and handle the situation with honesty and respect. You come across as a pretty frank, yet kind and funny guy to me. Not to mention, that this is your blog. It’s your internet home & thank you for letting me be a part of it. It takes balls to put yourself out there and speak your truth while still maintaining humility & compassion. And what’s the old saying? Opinions are like a-holes, everyone has one. Sorry if that offended anyone, but it still makes me laugh…
Plus, I love the amazing cast of characters I find in here – IrishHeart, the Jersey Girls, Gluten Freek, etc…you’ve all brightened my day many times. Keep up the great work.
When I am at work, I don’t feel normal, because I can’t share the birthday treats.
When I eat my lunch in the staff restaurant, I don’t feel normal, as I am the only person who gets told what I can eat instead of choosing for myself.
When I look at the salad bar in the restaurant, I don’t feel normal, because I daren’t have any because the risk of cross-contamination is too high.
When I go shopping in the supermarket I don’t feel normal. I dare not have meat from the deli counter, because the same machine is used to slice the breaded ham. And I read every label all the way through.
Coeliac UK has a fantastic website, full of information about the disease. But I don’t feel normal, because it emphasises the medical aspect of the disease. Their Facebook page is where the real people are, trying to get diagnoses, trying to live with a whole new diet. Should they try paleo? Should they substitute everything?
THIS is one of the few places where NORMAL people express themselves about not being able to eat gluten. Not the wannabe faddy dieters, who can fall of the wagon any time and not notice. The people in the world with CD and NCGI, who really need the diet. Who become ill – some people very quickly from the smallest crumb. Others over many years, which is much more insidious.
We don’t all agree with each other all of the time. But that’s a normal part of human life too.
It’s good that we all argue from time to time. It would be a really boring blog if GD wrote something, and 100 people commented to say they agree. It helps me find my own normal. It gives me something to think about. Sometimes it changes my opinions, sometimes it reinforces them. And it’s always interesting.
I may be speaking out of turn, but I was not under the impression you started this blog to make friends, but to help people through sharing your experiences and creating an environment where they could relate and vent.
That’s what I have seen here. That’s why we are all here. Some people have their own agendas and this is not for them. Some people are on the road to being informed but just aren’t there yet.
Bottom line is that your blog helps. Not everyone agrees and we all can get fired up regarding celiacs. This disease is infuriating. Not to mention a glutening can cause me extremely “ragey”…
I’ve only been here for a year. I am still learning, I am still scared at times. I take comfort in knowing your reaction times are long like mine. When I am trying to piece this all together and figure out this disease Irish Heart is there to validate what I’m going through and I don’t feel so much like a whack job.
So that’s what I see you doing through your site. It’s a virtual support group. We all have our own opinions and thoughts about what’s right. Some voices are stronger than others, but I have never felt that you have forced view points on anyone.
Don’t apologize, don’t explain yourself, just be who you are. It’s worked well for a lot of us.
I wish everyone would understand – there are no haters out there.
Your readers are backing you for what you do. You do a great job at educating and supporting all of us. They are also picking a side Against people … Not knowing the whole story … Whatever it is and Whoever they are?? …That is not justified. People that as you say GD you respect and I would hopefully be safe in saying they respect you as well.
We are all in this together period is how it should all go. Celiac, gluten intolerant – whatever that means and us that are undiagnosed. Who gives a crap what our labels are is how this should all go.
The ones we should all be fighting against is the medical community that has not diagnosed, misdiagnosed, took eons to diagnose and even those who promote gluten challenges so you can have the C word maybe written on paper. That is who we should be up in arms with … Certainly not each other.
Love you Dude! You make me laugh. You help me feel to connected to people in this isolating illness. You’re like my best bud! Even when you rant and we happen to disagree I feel glad to see someone else is ranting. I like this Gluten Dude group therapy thing we have going here so I’m not going get my panties in a wad if someone blasts my comments. To each his own. (By the way Dude there is no better celiac group therapy anywhere and I need you!) Don’t try to fit a mold or be a celiac leader. Just be you. It’s the best way to help the rest of us ordinary celiacs without titles and blogs feel normal!
1 you rock
2 you never try and sell me anything (though t-shirts would be ok…)
3 you don’t advertise or promote recipes for nutritionally vacant gf foods
4 you make me laugh
5 I like your friends
6 you are what you are (no apologies or explanation needed)
7 sarcasm is good (almost compulsory in the UK)
8 I like Mrs Dude and the Dudettes
9 Sometimes I don’t know if you need a slap or a hug. This makes you human.
10 you rock
T-shirts! T-shirt! We want T-shiiiiiiiiirrrrrrtttttts!
I’ve been watching this convo for 2 days and honestly, I still do not see how anyone would misinterpret anything the Dude has said regarding his concern for people who are NCGS.
I just cut and pasted this sentence from the second to last blog article he wrote). Word for word:
“Thanks Kelly. I actually wrap all those who NEED to be gluten free under one umbrella…whether it’s celiac or intolerance.”
I appreciate that you keep it real GD! That’s why Im here.
MW is right, you’re human, and you’re not afraid to put whatever it is out there. In doing so, you help so many others!
I also agree with Joy as well. It’s nice not to feel like such a nut. Very reassuring to see others still go through the same thing I may be. KateJ hit the nail on the head. I feel normal here!
Sarcasm? You have to find humor and that edge of sarcasm in life to handle the good and the bad ..or go crazy!
Simply stated GD…you rock! Forget the haters.
What’s the record for number of comments? Looks like this is #109! Popular topic! 🙂
That one is up to 251 comments….and counting.
I send this to all the newly diagnosed celiacs people send my way! Since my daughter was 4 when she was diagnosed I had to become the celiac for her. It’s been a painful long process and we’ve come out the other side thanks to you. Its also taught me infinite empathy for those that went undiagnosed for so long and suffer collateral damage. I don’t post thank you’s as often as I should.
Not only do I want a t-shirt (and I need those in chidrens sizes as well) but I also want a Gluten Dude Groupie Convention!!! I would love to meet all of you. Dude, you have assembled a great crew here and you and your crew have helped me tremendously in the last few months. Okay, so how long until the DFDC (Gluten Dude Groupie Convention)? I’m ready!!!
Okay, sorry….that’s GDGC…it’s late and I shouldn’t be typing!
I am mystified on the idea that the dude doesn’t support NGCI or any other medical reason for not eating gluten. I think even the bandwagoner trendies are not too bad if they don’t go round crunching croutons etc and helping convince caterers not to take us seriously.
I have been trying to get a diagnosis since April 2012, and one of the reasons I keep coming back here is because I don’t feel I have to be a ‘genuine’ medically diagnosed celiac to get information and support. I just take it seriously.
Turns out I don’t have either of the 2 genes tested for, so until the medical world acknowledges this is a spectrum disorder, I am plain old NCGI.
I am not lying awake at night now concerned that the Dude won’t want my company anymore.
By the way, I am 25 days into my Whole30, with buddy IH. Thanks Dude for blogging about your experience with this. I feel better than I have in years. Whole foods rule.
Dude, you rock
Just be aware that the Whole30 program does nothing for the T-cell response in people with celiac disease. All it does is help allow the gut to (to some degree) heal.
I’m going to be doing a gluten challenge and I thought some of you here might be interested in following my blog. I’ve been documenting my journey with the product here at:
Please subscribe. Thanks Everyone! 🙂
Sometimes I find the Gluten Dude to be too accusatory. GD has labeled me as a “shill” and I would like to emphasise that I am receiving absolutely no money whatsoever.
I have ads on my page.
So, for a final time, let me say that I am not affiliated with the company who makes the product I’m blogging about.
The Whole30 program also doesn’t do anything for the thing that triggered celiac disease in the first place. It can be dangerous as well. A family member of mine suffered immensely as a result of adopting such a regimen.
All sorts of foods can damage the intestinal lining and other tissues. Even fruits and vegetables are terrible for some of us. Think about fructose malabsorption (something that a number of people suffer from yet remain undiagnosed) and salicylate sensitivities.
I WILL NOT allow you to promote your dangerous product on my blog. Nice try though.
God one! Lol!
GfJ, IC whatever name you want to use:
OK it’s not the company that makes the miracle pills that is paying you -it’s an Internet marketing/ advertising company paid by the company!
Fructose malabsorption is often temporary in celiacs,salicylate sensitivity is rare and more common in people with urticaria –and there is absolutely nothing unhealthy about foods on the Whole 30 program.
Your opinion is “suspect” anyway —because you EAT GLUTEN ON PURPOSE THEN BLOG ABOUT IT.
By doing so, you mock those of us with celiac and gluten intolerance.
You are a wonderful, sweet soul who is so encouraging. In past posts your words were like a giant hug to my hurting heart. I have to say that I am one of those who got sick with whole 30 at first. I’m rare because I had a problem with oxalates (kidney issue, urinary pain and pain in the female area) 12 years ago and beat it with a low oxalate diet. Overdoing my choices of spinach, nuts everyday, sweet potatoes, spices and other high oxalate foods on whole 30 made me sick again. So yes, there are a few of us rare ones who can become sick from whole 30 if it’s an undiagnosed oxalate problem and we’re not counting oxalates. Google “low oxalate diet” and VP Foundation for more info. I’m not abandoning whole 30, I just have yet another diet to adapt to within the whole 30 diet.
I am very familiar with the low oxalate diet because I also had urinary tract problems and burning tissues (before my DX) and the GYN and I thought it might help. I went on it for a few weeks 2 years ago.
(there are not many elimination diets I have not tried : ) )
Actually, I too, had to tweak my Whole 30 foods diet because all that spinach, eggplant, tomatoes, and avocados raised my histamine levels and it causes major burning in my skin. It’s an awful sensation. Blech!
So, you make an excellent point about the rare occasions when it may not be best.
However, my statement was there is absolutely nothing unhealthy about foods on the Whole 30 program (meaning they are not doctored, full of MSG, fillers BHT, BHA, dyes and colors) and really, the vast majority of people would flourish by following it.
For anyone else reading, I just wanted to say Whole30 is working for me as a ‘reset’ of my eating habits and food choices, and as the first stage in an elimination diet. I am doing it under the supervision of a dietitian and a doctor.
I am not recommending it, rather am saying it is helping me. I will begin reintroducing other foods on day 31 ( currently I am thinking cheese, mmm).
I went this route after eating gluten free processed foods when I first went gf, and ending up ill from it.
I understand for some people gf processed foods are an attractive way to do the diet.
My gluten intolerance silver lining is that I have been forced to clean up my diet. But it will not be the right route for everyone.
A bit of me hopes we can be the vanguard of a better relationship with our food.
I am an optimist and a cynic. I think many of the people here are too. I like that a lot. I am keeping an eye out for those unicorns in case 🙂
My relationship with healthier foods has gotten better since my diagnosis. Used to be all fruits and any vegetables not cooked to the texture of mush had me in the bathroom all night long… my gut just wouldn’t tolerate them.
It is better now… fresh fruit is still out, but I can eat the canned stuff. Better than nothing.
I like hearing what other people are doing (ie Mindwarp)…b/c let’s face it….I don’t know what the hell I’m doing. Do any of us? It seems to keep changing on a regular basis for me. I think I’m doing well, then BAM! Not so much. So someday I might read about something one member is trying and in my mind say…Heck NO, I could never live like that, and a month later I’m on board. LOL. I used to feel that way about new fashion trends….
But SERIOSLY. WTF? This disease is killing ME!!! Well, not as rapidly anymore, but can I please catch a break here? I WHISH MY CELIAC WAS EVERYONE ELSES…not b/c I wish you all the hell I’m in, but so I could figure it out and it was cut and dried…..first this will happen, then this, then you will experience this, then do that……I would kill for that!!!!
I am sick and tired of being sick and tired. I am terrified of FOOD. I’m terrified of eating it, I’m terrified in losing it (as in another food I need to cross off my list). I live in paranoia…. I drink gallons of homemade bone broth a week (from dietician) then I worry, what’s in the chicken I used, is it injected or am I starting to react to chicken again like I was in the beginning when I was allergic to everything….Then I have the beef broth and I go through the same.
I WANT MY FREAKIN UNICORNS AND I WANT THEM WRAPPED UP IN A DAMN BOW..
also…anyone notice that the other night on Modern Family they kept using the word snarky over and over?
Hi Joy, I just wanted to sendy you some empathy here & a cyber hug (that looks weird on paper, but I mean it). I’m in the same boat & I’m totally worn out right now. Geesh. I really feel your frustrations. I could also use some FREAKIN UNICORNS WRAPPED UP IN A DAMN BOW…”
Right now, I’m trying to get a grip on some stuff – my immune system went hang-wire again over a year ago. One of the latest developments was gum inflammation & some recession that I’m trying desperately to get under control. I Never, and I men NEVER had any dental issues (other than some minimal grinding). After 35 years of nearly perfect dental health, I now have some #4 pockets & gingivitis??? WTH? My teeth are in good shape, but WTH, now my gums?? Anyone else have this issue? Recently read online that people with autoimmune issues are 8 times more likely to develop periodontal problems. So, this is another learning curve for me. Whenever I develop another food allergy – I’m like, WTH?? Like you, I think I’m doing well, then BAM! So, I’m trying not to freak-out (easier said than done, sometimes). So you’re not alone – we’ve made it this far. Sigh…It will get better (I think), but it’s still a learning process. Hang in there, we’ve all got to stick together with this thing. I wouldn’t have made it this far without my GF homies.
Hi Steph C!
Yes! on the dental stuff. I had great teeth—until I didn’t. (picture me with my fist raised saying “damn you, celiac”!) arrgh. $14K and 2 years later, I have my winning smile back. (factor in the $ 30K we spent floundering around from doctor to doctor, having tests run, etc. and the $10K on fertility treatments) and I’d say celiac has cost me a shitload of cash–and years of my life. oy….But I digress. 🙂 .
Vitamin D deficiency can be related to periodontal issues.
and you should take 500 mgs. vitamin C daily.
also, eat calcium-rich foods!
A good, GF multivitamin can help too–for selenium, zinc and E
I take Country Life GF (iron free) multi.
My perio issues are completely resolved after a few perio cleanings, a GF diet rich with leafy greens and calcium-rich foods and resolving the many vitamin deficiencies I had from malabsorption.
Hope this helps!
Steph…. It’s funny you mention gums….that was another thing I was able to put together… Forays long as I can remember my gums have been inflamed and bleed all the time. Going to the dentist is torture. They always yell at me for not flossing, which I don’t because it hurts. LOL… The one time I flossed every day, they still yelled at me for not flossing. It makes since to me. The inflamation is killer.
I HAD that too! With the flossing and the bleeding! My dentist gave me a prescription mouthwash … I THINK it had antibiotics but I could be wrong … I have trouble remembering details.
Thank you IrishHeart, Joy, and JerseyGirl 2 for your stories & suggestions. Oh Irish, I too was raising my fist in the sky last summer, and cursing Celiac. $14K (yikes) – did you have to have surgery? It’s probably time to increase the Vitamin D & Selenium!! – Vitamin D has probably saved me teeth (a blood test 3 years ago showed an extreme deficiency).
I’ve also been guilty of experimenting with a variety of toothpaste & mouthwash over the past 5 months – and I think it may be doing more harm than good. Even the xylitol mints seem to be aggravating the issue. Yeesh…
Anyone have a reliable toothpaste or rinse that they really like?
My mouth is a raging mess. I’ve spent a fortune on fixing it and am still spending. At this point I have gone completely natural, after finding a product in a local health store and doing what they recommend and looking up a lot of the products in normal toothpastes like glycerin I freaked out. Oil pulling and Earthpaste for me. There are probably plenty of good natural toothpastes without scary freakish stuff in them though, I use this because it is easily available and local as well as natural. The drastic approach I’ve taken isn’t for everyone. My husband thinks I’m turning into a hippie. (I also make my own shampoos, conditioning rinses and want to start soap making as well.) But if you’re already eating whole foods, or at least mostly, and doing everything to take care of your body like I was… idk, the next logical step for me was why the hell am I putting this shit in my mouth every day? Especially since I still bleed enough to scare small children every time I brush using it.
I am a simple girl. I floss with unflavored floss. I do not use any rinses.
I request plain pumice when I have my teeth cleaned. No listerine or any of that crap necessary.
I swish with warm salt water if I have any mouth sores or inflammation.
I do not chew gum or eat mints or anything. I had a burning mouth and tongue and white sores and lips sores for 4 years and now it is all gone. It was horrible for a while there.
The toothpaste I settled on–after much research and chats with the dentist and the periodontist –is Sensodyne Pronamel.
Protects the teeth and is GF and is not overly “minty” or anything.
I use a small amount on the Phillips sonocare toothbrush he insisted I buy and set it to “gentle”. This regime works well for me.
And, I take Vit D, C and calcium and eat calcium-rich foods.
My gums and teeth are healthy as can be now.
Hang in there!
I love the word snarky and yes, I love Modern Family!
Joy, I wish I could help you somehow, hon. Do you go on celiac.com at all? if so, please personal message me and let’s see if we can trouble shoot what may be going on. If I do not know the answer, there are many celiac-savvy people on there who will.
You have posted before about this on here and maybe there is something else going on. Just a suggestion.
I feel for you because my road to healing was not at all smooth or a straight line either. Not at all. But it does not mean it won’t happen.
P.S. Chickens are not usually injected with gluten so please put your mind at ease.
Thanks, I will message you. I have seen you on there. I have suffered gluten reactions 2 x since the week before thanksgiving. The first one lasted about 5 weeks, and the second happened the day after Christmas. I’m just beginning to come around…but not better yet. Argh! I feel like I’m trapped in my own body 🙁
Joy, please do because sometimes, just talking about a few things can reveal what may be going on.
I had so many of the issues you talk about and now, the only problems with food I have (just over 2 years GF)
are with high histamine foods (spinach, vinegars, alcohol–dammit!–, mushrooms, fish, cheese, etc ) and that is because the enzyme DAO is produced in the gut. I take a supplement with DAO and avoid those foods for a few weeks and it dies down and I can eat them in small amounts again. A deficiency in that enzyme can cause some “allergic” reactions. Not classic allergies (IgE mediated) that will show up on any testing either. And there is questionable validity to those IgG4 food antibodies tests that cost a lot of money and reveal “dozens” of food intolerances.
The problem is when the gut is damaged from Celiac, it can cause any number of vitamin, mineral, amino acid and enzyme deficiencies, but no doctor, dietician, or naturopath will tell you that–because they either do not know it or they do not take the time to explain it. Very few celiacs know this kind of thing because there is no “hand book” and only those of us who have researched our brains out stumble on this info and figure out what all the bullshit is going on inside us.
I had really bad neuro symptoms, too–and I thought I would lose my flippin mind before it stopped.
But it stopped. I had dozens of horrible symptoms–from head to toe–and they DO resolve, I promise you.
If you have had a brain MRI and it is clear, it is likely you do not have permanent damage.
I can talk more about this with you privately if you wish, but I just thought I’d put it out there for anyone else reading this thread.
Just want to say to everyone: Do not give up. It takes time, unfortunately, but it gets better. It really does! I never say die. 🙂
Thanks Irish… I know that I am not alone in this, but I can’t help but feeling so alone in my life off these boards. I know my husband tolerates it, but I think he just thinks he should pacify me for the time being….but I know he doesn’t get it. I think he probably thinks I’m nuts like the rest of them bc he can’t rationalize it or understand it
He really needs to read about celiac disease, then Joy, because it is real and it is deadly and you need his total understanding and support.
Why on earth does he doubt this thing? He can see you suffering.
Part of healing requires low stress levels and having to “convince” your partner you have this disease could very well hinder your progress.
I hope he changes his attitude because you deserve the support.
In the meantime, you’ve got our support! 🙂
He definately doubted it in the beginning before they knew what was wrong, and he doesn’t deny that. He says clearly, well, we didn’t know what was wrong with you. So he believed like the others that I was just depressed.
I think he knows I’m sick, but he doesn’t fully understand, but unlike me (who researches everything) he does not want to know so he doesn’t look it up. Maybe a defense mechanism. I did have him read some of dudes blogs. But I don’t think it went further than that. Except he must have read something at some point bc out of the blue on new years eve he announced that he read coronas were gluten free… Really? Don’t you think that we’re the case I would have already known that? I can’t drink omission without a raging headache, you think I can drink a corona????
We’ve had our fights, I’ve told him I get to be over reactive when it. Comes to gluten. Until you’ve felt what I’ve felt and. Even where Ive been you don’t get to judge me for being overreactive.
I think I got through. So he doesn’t complain when I can’t drive e kids in the morning, he just takes them now. He doesn’t say much, and at times I think he wouldn’t notice I was dead on the floor, but at least he will pick up my slack without complaining. That’s the way I have to look at it.
It’s just me, but I would have my husband read about celiac so he GETS IT. Otherwise, this will always be a struggle for you, honey.
Yes, I know….I have learned many years ago, when I ask him to read something he becomes obstinant and refuses…the more I push the more he digs his heals in.
I tried this years ago so he could understand what I go through having been adopted, he didn’t read, this is no different. I think he would rather go through life without knowing… Which yes, is an awful struggle for me, bc I am alone.
The whole time I was deathly Ill, my father kept asking me, does he know how sick you really are? NO……
He would downplay everything to d.pfriends and drs.
Wow(!), there’s a lot going on in this thread. Yet the main theme is fully intact.
“Help Me…Help You” works beautifully.
Keep doing what you’re doing Gluten Dude. #donthatetheplayerhatethegame
Thank you for sharing your thoughts and not being defeated. I used to write a lot about CD till a friend put a nasty comment on my conditions it was so hurtful I still can’t bring myself to go back writing about being gluten free. People really do hurt you. Thank you for still making your voice heard for all of us! Milly
Don’t let anyone influence what you say because your blogs always reminds me that I’m not alone in my opinion on what living with celiac is like! Us silly yaks 🙂 need a place to vent and share stories!!!
This is my favorite, most comfortable GF place to hang out. It’s my personal Cheers (or Central Perk) of the online GF community. My little haven where people GET IT. I don’t know from nobody here, personally. I know it’s Dude’s blog and he has great comment contributors – that’s it. The same as when you plop down on the local coffee shop couch or the little local barstool and feel welcomed? That’s this place for me.
Being a person that hasn’t been officially diagnosed (oh that pesky no-insurance issue) but having done a ton of research and then cutting gluten out of my life to really good results – I know in my heart I have some kind of gluten *issue*. Celiac? Dunno. Intolerance? Dunno. Allergy? Dunno. The cure for all of them is the same. DON’T INGEST GLUTEN. Period.
Here’s how I decide who takes this stuff seriously and who doesn’t – diagnosed or not (because we all know folks with positive test results who ‘cheat’ on their intake).
I am literally (and I mean LITERALLY in the true sense of the word) scared to death to ingest gluten. My body physically suffers in a way that leaves me incapacitated. My arm (or leg, or the other arm, or the shoulder, or the other shoulder – doesn’t matter) cannot move without me crying from the pain. Any movement. Try being a tax preparer who needs to use their hand and arm to work the calculator and keyboard and you have to use your ‘good arm’ those days to manually move your ‘bad arm’ into place. And every second of movement makes you want to throw up from the pain.
Being diagnosed doesn’t make you a ‘better’ sufferer of the problem. Being undiagnosed doesn’t make you a ‘lesser’ sufferer. Being educated makes you more educated and being an asshole makes you an asshole. That’s just the facts.
If you suffer debilitating effects from eating gluten, well, then I think you probably take this issue very seriously. If that observation makes me an asshole? . . . I’ve been called worse and that’s just this week 🙂
I like your style, ajdury! It IS kind of like the Central Perk of the gluten free kingdom.
I love what you said ajdury, this is what GD’s blog is all about.
Finding GD has helped me so much. Reading every ones experiences, and how they have felt having CD or a gluten response, has always made me feel like I’m not alone.
There is nothing here in paradise for support, and I am grateful to be able to check in here, read what the Dude has written and/or made us all think about.
Irish Heart has also helped me tremendously,
My husband now speaks up for me and I think that is because he on occasion reads GD’s blog.
He was quite the skeptic at one time: about the gluten “thing.”.
Now he understands, and I am so grateful and feel better too. No more shared butter, toaster, a kosher kitchen, and GD, and IH, made me realize that early on. or I would still be suffering.
Thanks GD for helping me, and so many others.
Now I have to go answer a math question!
“Thanks GD for helping me, and so many others.”
You are quite welcome!
“Being diagnosed doesn’t make you a ‘better’ sufferer of the problem. Being undiagnosed doesn’t make you a ‘lesser’ sufferer. Being educated makes you more educated and being an asshole makes you an asshole. That’s just the facts.”
dang, where are those “like buttons”??? I Like! I Like!!
It’s kind of long, but I wouldn’t mind THAT on a T-shirt either. Maybe we need a BOOK of quotes (and still some T-shirts).
How frustrating! Before I got my diagnosis, which wasn’t immediated because the homeopath took me off gluten before running a screen, I FELT that no one would take me seriously ( not here, but in the outside world, and maybe among some celiacs). In retrospect, I don’t know what I was worried about. Now, with the diagnosis, nothing has changed, I was off gluten before, i am still of course now, bc it is like you debilitating….but I have come to the realization that (diagnosis or not) NOBODY understands other than a fellow sufferer!
I find that my family members and friends who took the time to learn about CD do “get it” and are wonderful sources of support.
Maybe they have never felt the physical or emotional pain (and isolation) I have felt from being so ill, but they all saw me go downhill and they cried tears for/with me and they felt helpless. I thought my poor hubs, mother and sister would become seriously ill themselves worrying so much about me. Many people could only say” I’m praying for you”. I appreciated that thought.
Some people abandoned ship (it hurt me terribly– but so be it)
but there are people in my life who are empathetic and that is very supportive and I appreciate their efforts more than I can say.Some have even learned to cook safely for me.
My point is–yes, only a fellow celiac/gluten intolerant knows what it feels like to suffer from this thing, but the most important people in your life can be very helpful–IF they are willing to learn about the disease.
I have learned valuable lessons about human nature during my long illness. It’s this: Some people have a “there but for the grace of God go I” mode of thinking. I could well imagine the “Whew! thank God, that’s not ME that is in that agonizing pain! ” thought bubble over their heads. Some stopped calling and have never asked about my progress since.
Sadly, we cannot make other people give a shit.
True empathy is a gift. Not everyone has it. Some of us possess it innately and those of us who have suffered become masters of it.
I just wanted to say Dude that I LOVE YOUR BLOG!!! I love your snarky and brutally honest approach to CD- Celiac Disease SUCKS BIG TIME! Reading your blog has made me feel validated all those times I got glutened, felt horrible and all alone because no one around me understood. I struggled not only physically but emotionally . I would be depressed and hating my life – for a short minute- ok maybe two. ;). I realize now it’s the symptoms talking and not how I truly feel deep down. It helps to know not everyone feels chipper and full of happiness every minute with this stinking disease- I am not seeing rainbows or kittens and certainly not expelling unicorns when I am suffering from gluten exposure In those times I am not a happy camper and don’t have the engery to pretend I am fine..but generally I TRY for my husband’s and children’s sake to keep to myself as much as possible and keep my stinking attitude under wraps- doesn’t always work lol I can be a real witch post glutening but I try.
I say: Speak your mind Man!
I will never forget the first time I stumbled upon your blog: I had been struggling with being the (I thought) one jacked up person who doesn’t get better (or skinny) from Nazi-ing out the gluten. I was reading a post in your beloved snarky tone and literally said, “Holy crap!!! It’s not just ME”. I have never been so happy to be “one of the crowd” in my life (I have a bit of a rebellious streak).
I haven’t been blog visiting much as the last year has been psychotic for me: broke my leg, threw a wedding for my middle daughter, sold a house, bought new house, packed and unpacked both houses all while still not feeling “better” and having my guy working out of town for 98% of that time. BUT…
I love knowing that there will be a voice of reason, cynical and in your face, voice and a group of people whom I’ve never met who understand when people, (even friends) treat you as if you’re exaggerating or lazy.
I am a “speak all your thoughts” kind of gal and I often feel as though I live in a silent world w/ Celiac. I live w/ a family I love and whom know me well, but still don’t KNOW. Your blog gives me a place to come in rage, anger, exhaustion, fear and even self-pity, and someone knows…
That’s what I’m here for Kara…
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