Thanks…I Needed That

celiac advocate

Between Cheerios, the media, Udi’s, and some ridiculous infighting within the celiac community, there has been an aura of negativity surrounding my advocacy lately. I’m not a negative guy. I just can’t stand BS and I can’t stand injustice. So if I see it, I say it.

Other advocates simply focus on the positive. And that is needed in this community as well and I am appreciative of all of the advocates out there.

But we need people to call out the BS. Otherwise…well…nothing will change. And change is good.

celiac advocateMy point? Seriously…I do have a point. My point is that it can be a drag after awhile. I have a good friend who is a fellow celiac advocate and our conversations are almost always about what we do. Lately, we’ve been saying that we seriously need a night where we simply hang out and talk about anything BUT celiac. Now wouldn’t that be nice.

Anyway…long story short…I received the following email recently and if nothing else, it simply validated what I try to do here and made me believe that it is indeed all worth it. It was a real shot in the arm and so friggin’ appreciated.

Hey Glutendude!

Just wanted to drop by with a (not so) little thank you note. If it hadn’t been for your infographic of coeliac symtoms I’d never gone gluten free. If I hadn’t gone gone gluten free I probably wouldn’t be here now. Being okay, for the first time in my life, for a longer period at a time than I ever dreamt was possible.

Thanks.

I’ll probably never get the official diagnosis (yay for lab AND doctor screw ups, long story), but that really doesn’t matter in the long run.

Thanks for being an advocate, for ranting, bringing information, discussing and letting people vent!

Thanks for not bashing those of us who sometimes feel like we’re not coeliac/NCGS enough, but will never ever (NEVER!!!) willingly or knowingly eat the tiniest amount of gluten containing anything.

Thanks for making us belong too.

Thanks for having a gluten free safe haven on the interwebs. Where people are welcome as they are.

Thanks for yelling at the media.

As one of those who was bullied as a child, by the populair kids of course, it really sucks when your favourite television character gives a “gluten free punch line”. It’s not so much the lines themselves, but rather the wast amounts of them. Everywhere. Like all those innocent comments, that teachers didn’t thought mattered. But each time you feel like you matter a little bit less. Are a little less human than they are.

In other words, I have this not-so-strange fear that society is teaching children that it’s okay to bully children who are gf. As well as teaching gf children that they’ll have to quietly accept it. We all deserve better than that.

Sorry for the mini-rant.

Thanks for yelli,g at the media – can write it twice, right?

Thanks for having a space where ranting AND caring are encouraged.

Thanks for being around.

Thanks for saving my life.

Thanks for giving me some of the tools for me to save my life.

18 months ago I never thought I would’ve made it till the following Christmas. I am still here, 25 years old and still getting used to the notion of having a life.

Thanks.

You’re thanking me?? Thank YOU. I needed that. So glad you are on road to recovery. Welcome to your life.

GD

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20 thoughts on “Thanks…I Needed That”

  1. It’s true – sometimes just knowing all of us in the Celiac community have such a zealous advocate gets me through the day!

  2. I love, love, love this too. I FEEL everything this person said; it is so reflective of my situation (except the age). Thanks to the person who emailed the rant! And thanks to Gluten Dude for the blog! It really is a huge source of information, connection, inspiration, and emotional understanding that I need in my life. Keep on rockin’ it!

  3. Dude

    Agree wholeheartedly with your emailer & Courtney above!

    “Without a struggle, there can be no progress.” — Frederick Douglass

    Also agree the positive only advocates are helpful and needed; however, it’s disingenuous for supposed play acting “positive only advocates” to wrongfully throw negative rocks at you for challenging those who need challenging and to publically call your advocacy unnecessarily negative. I understand your frustration and will continue to support your valiant efforts. As an objective observer who did not fall off the turnip wagon yesterday, the wool is not easily pulled over my eyes. Keep on honestly advocating and your efforts for our good health are much appreciated!

    Had to laugh out loud with the Boss’ words. After my 3 types of celiac related cancer and 5 retina surgeries, my retina surgeon’s nurse said last week that I’m looking good. I didn’t know whether to believe her or be thankful for her “pity encouragement”. I thought to myself “Yep, as soon as I get my tooth back in, get my walnut sized mass under my tongue surgically removed and the vision back in my right eye, I’m going to be rollin'”! Just a little touch up and paint…indeed! At least I look unfazed!

    I’m also with you – and really looking forward after 3 unrelenting yrs of CD issues to putting all my pieces back together and enjoying at least 1 night out when CD is not discussed.

    1. Yeah…public positive awareness. But behind the scenes, some serious cattiness and just plain being mean. It is what it is.

      Keep the strength Hap…you’ve been through a lot.

  4. “If you see fraud and do not say fraud, you are a fraud.” – Nassim Taleb

    It’s a tricky thing, the criticizing of companies and organizations that make some effort to provide GF options. While you don’t want to discourage the effort or penalize a company just for trying to do the right thing, you also can’t stand by and say nothing when there’s real risk of making people sick(er), or when the quality of a product is so low it equates to taking advantage of the GF consumer.

    As you well said, there are plenty of folks out there saying only positive things. That calls for a balance of honest criticism and comment; which is what you’re clearly doing here. Keep doing it. We need it.

  5. Gluten Dude, Please know that your blog is often the only thing that keeps me sane. I have celiac and both of my young kids do too. Being a celiac and caring for celiacs can be lonely and surreal. I hear myself telling my son’s camp chef that he cannot eat out of a peanut butter jar that has ever been used by a gluten eater and think, “Can this really be my life?” Your blog has the sense of humor and the tell it like it is attitude that I crave.

    Your critics don’t speak for everyone with celiac and NCGS. How could they? We are all affected differently by this disease, and we all have our own ways of coping.

    Keep doing what you’re doing, please!!

  6. So nice that you received this positive feedback, GD! Really, who wants to focus on these negatives? Nobody, but it’s part of the job of being a gluten-free advocate. One can’t have it both ways. One can’t call one’s self a gf advocate and/or expert (as many do and sell books and more based on their expertise) and only share the good news and ignore the rest. Keep on keeping on!

    Shirley

  7. One of the best things that’s happened to me since my celiac diagnosis in 2002 was finding your blog. It’s given me more strength and saved my sanity more times than you could ever know!

    I have food allergies in addition to the celiac and live with a spouse who, even after all these years, refuses to understand much about either. I have been dealing with doctors who sneer and treat me like garbage as soon as I mention that I have celiac (one even put in my record that I am, basically, a self-diagnosing food faddist, completely ignoring my actual medical history). Even my long-time acupuncturist, who has long known about my diagnosis, made an unpleasant comment the other day about people who eat gf …. and on and on and on… As you know, it can really grind you down.

    But then I come here and you and this wonderful community you have brought together is like one big, informative support group. I’m suddenly no longer alone in this madness. You give me the strength to be an advocate for myself. Just knowing that there is a voice willing to fight for our dignity and our safety… It means so much. A big thank you from me as well!

  8. Yes – what this fellow said – in spades!!
    I’ve been gf for about 15 years (!?!?) and right about now, I am SO. SIcK. of having to look at every damn bite I eat with suspicion. I do it – I’ll never STOP doing it – my also-Celiac brother and I think of the stuff as Rat Poison.
    Hey! Rats love the stuff – it is made to taste DELICIOUS to them. – and then they die.
    Makes it easy peasy not to miss it.

    But, in these days when I sit across the table from my friends and think “OH MY GOD how sick they much be of me always sending the waiter away!!! ” and of course they are not, because they are good friends and they love me…

    In these days – having you and your Real Human Talk and NO BS policy – SO refreshing!! –
    and the fact that you are a fellow long-time Bruce fan makes it all that much better –

    I wanted to un-lurk and chime in here with the Gratitude for the Dude. 🙂

    Thanks for fighting the Good fight and being there.

    No Retreat, baby, No Surrender.

  9. I’m an NCIS addict. Partly because of its alchemical depth and partly because its surface lessons are so useful and pertinent to life, so my comments are going to reflect what I’ve learned from watching that show:

    We can’t always see the influence we are currently having on others today. That’s especially true about online groups, communities, forums, and blogs. Most readers don’t speak up. But that doesn’t mean we are not planting seeds and, thereby, affecting them for good.

    What you do for people matters.

    I wonder sometimes about those who blog Polyana style. Are their lives really as healthy and carefree as they portray? Since I’ve been sick for a lot of my life, I find it very hard to believe it is. Like you, I haven’t found a lot of healing in going gluten free. I have a lot of permanent neurological damage, but at least I’m not living my life in the shower anymore. I can be thankful for that.

    There is a very big difference between blogging about the joys of life “despite” celiac disease or non-celiac gluten sensitivity and telling people post after post after post after post how thankful you are that you have celiac disease. It makes me scratch my head and wrinkle my brow at bloggers who do that. I don’t get it. I can’t relate to that. I think that most of the people who come here to read your blog can’t either.

    While I look at life a little more objectively than others do, I’m also a realist. Clearing away the illusions and pulling back the curtain on the Wizard of Oz is what I do. That’s what you do too. You cut through the bull crap and get to the heart of what’s really going on, so I’ll say it again:

    What you do for people matters!

    And because that’s true, it doesn’t matter what anyone else thinks about what you’re doing. Thinking isn’t doing.

      1. Thanks. You have helped me to clarify and further define my purpose. I’ve been stumbling around with that for quite a while now. I got sucked into the low-carb crowd when I was chasing after a cure, and that blog just doesn’t want to die. LOL. But you’ve also given me some good ideas of what direction to go with that too. Thank you so much for just being you.

  10. Dude,
    Your the one who annoyingly insisted that gluten free wasn’t good enough, a totally unpopular and harsh opinion. And when that finally clicked I started getting better.

    Seriously, thank you. You are really helping people.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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