Who the Heck is Gluten Dude?

gluten dude

Who am I? Darn good question. Been asking myself the same question since the day I was born.

As it relates to this website and my mission, I’m somebody who’s been gluten-free since 2007 due to a diagnosis of Celiac disease, where the doc said my numbers were “off the charts”. 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 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.

An Interview with Gluten Dude

If you are just a tad curious to read a bit more about me, following is an interview a fellow blogger did with me in 2012. And here are some wonderful testimonials from the community. Self-promotion is so ugly, isn’t it??

Tell me about your experiences before being diagnosed with Celiac Disease. How did you deal with your symptoms?

gluten dude halloween

As Britney Spears, just after my diagnosis.

When it comes to symptoms, I was one of the lucky ones. My symptoms were not as bad as many in the celiac community. I did not grow up feeling “sick” like so many others did. I had my issues which I have talked about in my blog. But for the most part, I was pretty normal (though my parents may seriously beg to differ!)

My main symptoms started about six years ago and consisted mostly of constant stomach pains. Every night, I’d lie in bed complaining that my stomach hurt. And every night, Mrs. Dude would implore me to go to the doctor. And every night, I’d say “Oh…I’m fine”. But after about a year of this, and losing 15 pounds on an already pretty slim frame, I decided to go to a recommended GI in Princeton, NJ.

Being the organized soul that I am, I kept a food journal for a week before my appointment. What did it consist of? A bagel here and there; a few bowls of pasta; a few beers. I thought I was being pretty healthy. The doctor took one look at my journal and my symptoms and asked me if I had ever heard of Celiac disease. I had not. He said that I need to get tested ASAP.

The blood work came back first and he said they were the highest numbers he’d ever seen (I wish they said that about my SAT scores!!). He told me this as I was on the table about to get my endoscopy. So before I was put under, I pretty much knew. When I awoke, he said the villi in my intestine were pretty much gone and I indeed had Celiac disease…quite badly.

And so my journey began…

How did you feel once you were diagnosed with Celiac Disease? Tell me about your experiences of implementing a gluten free lifestyle.

How did I feel? Angry, mad, pissed, upset. Pick a strong adjective and that was me. Six months earlier, I got a diagnosis of bladder cancer and now I had to deal with THIS?

All I could think about was the food that I could no longer have. My focus was not on my health, but on what I would miss out on. Not the best attitude I admit, but at the time, that’s what I felt (and still do once in a while by the way).

No Gluten

In case I forget…

I still remember going to Wegmans (our grocery store) for the first time after my diagnosis and just going up and down every aisle saying “I can’t have that. I can’t have that. I can’t have that.” It was so bizarre to me that all of the sudden there were so many foods that I could never eat again.

From there, Mrs. Dude and I immersed ourselves in all things celiac. We knew we had to be our own biggest advocates so we read and we read and we read some more. We brought all new kitchen cookware and utensils just for me. We made one shelf in the fridge and one in the freezer just for me. We made the pantry just for me. We made one of our kitchen counters off limits to everyone but me. I was my own island.

There is no way in h*ll I could have made the transition without the amazing support of Mrs. Dude. She was, and continues to be, incredible in her support and in trying her best to make me feel “normal”.

It was a tough transition though, accentuated by the fact that I was 100% gluten-free (never cheated, never will) but I was not feeling better. Going gluten free became easier but it took two years before I could feel myself begin to heal. And coincidentally, that was about the same time I stopped buying the gluten-free processed crap and focused on more natural foods.

no grain no pain

My “No Grain. No Pain.” tattoo.

It’s a real mindset to give up some of those foods. You buy Amy’s Pizza so you can still have pizza. You buy Pamela’s chocolate chip cookies so you can still have cookies. And I’m not knocking these companies. I’m thankful for them. But it wasn’t allowing me to heal. It’s now very rare where I’ll have something processed.

Do I miss it? Yep. But do I mourn my old lifestyle? I do not.

Do you have any tips for those new to the gluten free lifestyle, Celiac Disease?

I get this question a lot on my blog. And my answer is almost always the same: Patience. Lots and lots of patience. You will not adapt to your new life right away. Give yourself time to get mad, to mourn the loss of what was.

But during this time, DO NOT CHEAT. Not even once. You are done having gluten. Forever. The sooner you can accept it, the better.

Gluten Dude

With 3 of my favorite things: sushi, alcohol and warmth

You don’t have to love the idea. I don’t know one celiac who does. But you do need to accept it and embrace it because you have no choice.

What seems almost impossible when you are first diagnosed becomes difficult; moves up to bearable and eventually it becomes manageable. It never quite becomes easy but it does become something you can manage on a day to day basis.

And one big tip to celiac newbies: If in doubt, do without. It’s my new mantra. Don’t take chances if you’re not sure about something. That one minute of eating pleasure isn’t worth the days/weeks/months of pain you will endure afterwards.

Oh…and one last piece of advice. Don’t expect to feel better right away after going gluten free. Some celiacs do. Some don’t. I certainly didn’t. But be diligent, eat healthy, exercise regularly and eventually your body will begin to heal.

I love one of your earlier posts called “The bright side of having celiac disease (according to the Gluten Dude’s children)” because it’s very positive and I love #6 You’re not alone. How has Celiac Disease affected your family life?

Now that’s a good question. My kids actually gave up gluten just for me.

Oh, wait a minute…no they didn’t ;)

I actually once ordered a gluten-free pizza from a local Italian restaurant while one of my girls got regular pizza. She asked if she could have a bite of mine. After taking a small bite, she simply asked “Does all of your food taste like this?” Gotta love it.

mrs dude!!

The one and only Mrs. Dude.

Look…I’m blessed with an awesome family. Mrs. Dude is the best support system a guy can ask for and my kids are acutely aware of my disease, are very concerned about my health, are supportive of me and are as careful with their food as two teen girls can be.

As much as I wish it wasn’t, celiac is our life. We can’t separate the two because it’s part of every meal we eat and every place we go.

And the fact that I don’t feel well much of the time has an effect on them to. As Mrs. Dude frequently says, “When you get sick, it affects ALL of us.”

So it’s real important not to get pigeon-holed into thinking the disease is just about you. It’s not.

Let’s talk about your honesty and outspokenness. Where does this awesome passion come from?

I’m pretty passionate about a lot of things; annoyingly so at times I’m sure. Perhaps it comes from being deathly shy as a kid and making up for all the things I wanted to say back then but never did.

I’m very passionate about our disease and the misconceptions of it in a lot of the public eye. And the only way to get my message across is to be strong about it. Not obnoxious, but strong. Yes…it’s a fine line I walk and sometimes cross over, but I know I’m reaching people and that’s all that matters to me.

How irritating are the following: celebrities, media, and folks (family, friends, other people) who don’t do their research about Celiac Disease, Gluten Intolerance, Sensitivity? I personally believe that some people are not proactive in researching anything and talk out of their butts. It’s irritating to me because I believe in educating yourself. How crucial is it to advocate and educate others about CD, GF lifestyle?

Well…I wouldn’t lump all of those people together in one category so I’ll see if I can break it down for you.

Celebrities fall into one of a few categories.

You’ve got the Zooey Deschanels, who have some type of gluten-sensitivity but are pretty classy and quiet about it. Annoyance scale: 0 out of 10.

You’ve got the Gwyneth Paltrows, who don’t have celiac disease but still believe you can be ultra-healthy by going gluten-free; and are very public about it. Annoyance scale: 4 out of 10.

Kim Kardashian GlutenYou’ve got the Kim Kardashians, who are clueless and think it’s a weight-loss tool. Annoyance scale: 8 out of 10.

And you’ve got the Dean McDermotts, who actually have celiac disease and could be a great advocate for us, yet still eat gluten and are public about it. Annoyance scale: 10 out of 10. (But in all fairness, isn’t everybody on a reality show annoying??)

Don’t get me started on the media. They are always looking for a story and with all of the media outlets these days, there is high competition. So I expect nothing different from them then what they’ve always done: scrape the bottom of the barrel for a buck.

As far as friends are concerned, it would be nice if all of my friends were as knowledgeable about celiac disease as I was. But I certainly do not expect it. Why should I? They don’t have the disease…I do. Some of my friends get quite stressed having me over for dinner…understandably so. Not only do they need to worry about the food, but the cross-contamination as well. My message to them is this: I’m ok bringing my own food. Honestly. It’s not worth you stressing about. I’m there for the company. And the vodka.

At the end of the day, all I ask is that people be respectful of my disease. I’ve been lucky. The people in my life have been extraordinary to me. I hear much differently from a lot of other celiacs. It’s a real shame.

And as for family? They better be there for you 100%. It infuriates me when I hear otherwise.

Tell me about your blog. What is your goal with it? What new things will come to the Gluten Dude blog in the future?

I started my blog in October of 2011. Previous to my launch, I followed a lot of other gluten-free bloggers and I just felt there was a space that needed to be filled.

There were, and still are, many wonderful, talented bloggers in the celiac community. But many of them focus on the gluten-free diet aspect of the disease via recipes, etc. And like I said, these blogs are important.

gdude

Thanks for hanging with me.

But I wanted to be a voice that said “Hey, you know what…celiac really sucks…here’s all the crap we have to deal with…let’s share our stories…and make the journey together.”

And through this process, I sincerely hope to help people and be a strong advocate for those with celiac disease.

They say your blog isn’t a great blog unless you’re pissing off at least one person. I’m not sure I wholeheartedly agree with that, but I think people have an appreciation for honest, passionate writing and the response I’ve gotten in the past six months has been wonderful.

And kudos to the gluten-free community for opening their arms to me. Well, except the folks at celiac.com, but that’s a whole other story.

As for the future…who knows? I’ve always said I wanted to make a difference in people’s lives in some capacity; that I believe I’m here for a reason that goes beyond working and raising a family.

Perhaps my disease and my blog is part of this calling. We’ll see.

#NoCureNoChoice

27 Comments

  1. 1

    Laura

    Thank you! I’ve been gluten-free since I TOLD my GI doc what I had 25 years ago. Your blog and web page is such a gift! I have friends and family who think gluten just makes me sick to my stomach, pretty ill sometimes, but who don’t understand that it affects my joints, muscles, brain… You explain it all very well!

    I will be praying for Mrs. Dude, and I hope her cancer is blown away by prayers and thoughts of others! Celiac disease sucks, but cancer, I think, sucks more. Blessings to you both!

    Thank you, again!
    ~ Laura

    Reply
    1. 1.1

      Gluten Dude

      Thanks tons Laura. Yeah…cancer totally sucks it.

      Reply
  2. 2

    Tara

    Hi!

    I just stumbled upon your site and I’m so glad I did! My youngest daughter has Celiac and was diagnosed when she was just 1 year old. (I just added her to your faces of celiac) and 6 months after she was diagnosed, her number were 579! Now they are 12.
    On a side note, because we are all gluten free in my home, have you tried Ground Breaker Beer? It’s by far the best beer out there. Try it, you’ll love it.

    Reply
    1. 2.1

      Gluten Dude

      Got the picture…adorable. Glad she’s healing.

      Yeah…Ground Breaker is phenomenal. Can only drink it though when they send it to me. Not available in my area…yet!

      Reply
  3. 3

    gfchopstix

    Hi Glutendude,
    I’ve been a ‘silent’ follower for a long time now, but only just got around to reading ‘who the heck you actually are’ :P
    I do appreciate that fact that you blog about what our lives, living with gluten intolerance / celiac disease is really like, and how much awareness you raise for this disease.

    Thank you!
    Cheers,
    GF-Chopstix

    Reply
    1. 3.1

      Maggie

      I am so glad I found you. I love your huge sense of humor. It makes this transition (once and for all) a lot easier. I like your raw, down to the point, no bs, advice. I was diagnosed with this when I was younger. I tried to follow certain ways of eating, but always find a way to cheat. I was only cheating myself.

      Now it’s all about health so, thank you so very much for your great advice. You are different from other blogs.

      :)

      Reply
  4. 4

    Cheryl

    A great BIG thank you Gluten Dude. With the holidays rolling around and anticipatorial “anger over forthcoming comments from ignorant extended family member about my teen daughter’s Celiac Disease” building up, I googled that phrase and stumbled upon your website. It made me laugh and realize that we are not alone in our rants and concerns. Live long and prosper and Happy Thanksgiving!

    Reply
    1. 4.1

      Gluten Dude

      My pleasure Cheryl. It’s a shame the ignorance that is still out there. Happy Thanksgiving!!

      Reply
  5. 5

    Jacob Arlington

    I just wanted to say thanks, i just found your site today and it’s remarkable, my girlfriend has celiac disease and so does her mom and sister. I love the straight to the point no bs advice especially for someone who does not have Celiac or any gluten sensitivity.

    Reply
  6. 6

    Donna

    Celiac Dude–just discovered you and am still chuckling–thanks. I am going on 15 or so years as a celiac and find it frustrating at times to this day–but I too am an advocate for public awareness –the CORRECT info. I too have managed with humor, as have my friends sharing a meal with me–they step up and add their concerns to the waiter. Got to love sharing the wealth!
    I look forward to receiving many more words of wisdom from you–who knew I would find such an informative, fun article searching for bourbon information.
    Thanks again—yours in the gluten free society.

    Reply
  7. 7

    Cathy

    Very funny-just found out 72 hrs ago-a Sherlock Holmes derm dudette figured it out–after a shoulder break 5 months ago,discovery of osteopenia-starting after the break,and this weird rash-etcetcetc-needed to laugh,thank you very much😅

    Reply
  8. 8

    Emily

    Have any of you tried Goodbye Gluten bread? It says it’s certified gluten free. The company is in Horsham, PA. I think the bread is great: stays together, no holes, proper texture, great taste. I had my first decent sandwich in 10 years.

    Reply
    1. 8.1

      Gluten Dude

      And right by the Dude ranch to boot ;)

      Reply
  9. 9

    Diwash Rai

    Hey Gluten Dude.First of all i feel extremely happy ,relieved and happy finding your site.Im from Nepal its a country in south asia not so advanced like 1st world countries.Its been 2 years im having symptoms and just recently diagnosed coeliac after bundles of tests for Worms,IBS,Gerd etc etc.I felt the same as you have mentioned and im just 19 y.o..I was going through high shool life and everything felt so crappy and miserable.I suffered a lot,I have been going Gluten free diet for around couple of months and honestly im more motivated and inspired to go gluten free after reading everything in your site.Please keep updating everything.Lots of Love from Nepal :)

    Reply
  10. 10

    Dee

    You said, “except the folks at celiac.com, but that’s a whole other story”, tell us more :)

    Also, “As for the future…who knows? I’ve always said I wanted to make a difference in people’s lives in some capacity; that I believe I’m here for a reason that goes beyond working and raising a family. Perhaps my disease and my blog is part of this calling. We’ll see.”
    Yer kidding right? We’ll see” No offence to blind folks, but are you blind man?

    Reply
    1. 10.1

      Gluten Dude

      Many thank Dee. As for celiac.com…just not a big fan. I don’t feel like they are community first.

      Reply
      1. 10.1.1

        dee

        yes, it is not warm and family like, like your site is.

        Reply
  11. 11

    Mike

    Love your style of writing and the energy you put into this blog. My 14yr old son just been diagnosed so it is taking some time to download all this info and the impact. Being kosher makes it even more limiting what he can eat, but he is very disciplined and 2months down the line he is getting over his initial anger and disbelief.
    Look forward to reading/learning more from your blog.

    Reply
    1. 11.1

      Gluten Dude

      It sux in the beginning…no doubt. Glad you found me.

      Reply
  12. 12

    Brian

    Gluten Dude,

    I was just diagnosed with Celiac Disease about 2 weeks ago. Funny, I stumbled on your web site while Googling all things gluten free and after reading your story I find myself in that phase where I have to find all of the gluten free, processed food products on my local grocery store shelves like cookies. Thing is, I feel, like you, that even that stuff just isn’t going to help me “recover” from the damage I suspect I have from gluten. I have not had any sort of scoping procedure done yet, but when I was diagnosed it was like a light went off, yeeesss, this must be why I have suffered for so long (years) with constant gut pain and discomfort. Well, i guess only time will tell as I start a gluten free diet but I agree that only eating unprocessed foods is probably best. But how do you do it??? And do you really have separate shelves and utensils? Just wait until I tell me better half and my kids I need my own space in the kitchen away from their gluten contaminated products! Well, anyways, thanks so much for sharing and I look forward to reading your posts. My journey has just begun.

    Reply
    1. 12.1

      Pat

      Hi Brian,
      I too was just diagnosed recently from blood tests and immediately went GF and starting reading everything I could find on celiac. Although my GP didn’t think it was necessary, all the books and articles insisted that the diagnosis be confirmed with a scope. And (here’s the kicker) in order to have the scope I had to be eating gluten daily for 6 weeks. I had only been off gluten for 12 days by the time I saw the gastroenterologist, but he insisted I go back on. My body reacted really badly – 10 times worse than ever before. And every day I questioned why I was doing this to myself. Just as I was about to call quits, I emailed the celiac assoc and finally got some answers that made sense to me. Biopsies are currently the only clinically accepted proof of celiac. In very rare cases, the high TTG score has turned out to be from another cause. And having a scope at the beginning, gives a benchmark for down the road. (If my TTG scores do not come down substantially over the next 6 months, my gastroenterologist is suggesting I have another scope.) But here’s what convinced me. If I have to enter hospital or a nursing home and ask for a GF diet, they might not give it to me without the clinical diagnosis (too expensive). Also researchers are about 5 years away from a pill that we can take if we inadvertently eat gluten ( similar to what lactose intolerant people have) and chances are to qualify for the pill, we might have to have a clinical diagnosis. The conclusion was that I don’t want to spend the next 2 years getting my gut completely healed and then have to go on a gluten challenge for pragmatic reasons.

      I am just offering this to you as in your post above, you said that you had not had a scope “yet”. I decided to go ahead and get one and do indeed have severe “villous blunting”. (Isn’t that a wonderful phrase … I just love the sound of it. Makes me want to write a horror story and have the evil monster called Villous Blunting). It sounds like you are already eating GF, so you might want to start reintroducing gluten if you plan on having a scope. They told me the equivalent of 2 slices of bread a day. But just be warned, it might not be pleasant. The scope itself is a breeze.

      Wishing you all the best whatever you decide.

      Reply
  13. 13

    Pat

    Hello,
    After 2 years of complaining to my doctor that I am losing weight and then being diagnosed with osteoporosis, I finally was tested for celiac. My TTG score came in at 93 (7 being normal). I have now been gluten-free for 3 months (at least I think I have!) and just had the blood tests redone this morning. I have been warned not to expect a normal score yet .. but no-one seems able to tell me what is reasonable. eg. if I get a score of 60, should I be jumping up and down and congratulating myself that I’m on the right track ….. or should I be rushing back to the dietician to figure out where gluten is creeping in? Are there any guidelines on this anywhere?
    I haven’t really noticed a huge difference in my health – occasionally I get this incredible feeling of well-being wash over me but most days am just blah. Nothing specific, everything in general. I’ve put on about 4 pounds – another 13 to go …..
    It was a relief to read about you and that it took so long for you to feel well. I’m been thinking that I’m being a complete wuss about this.

    Reply
    1. 13.1

      dee

      Hi Pat,

      I will try not to sound too preachy here, forgive me if I do. I am very passionate about health since getting the CD and PM (polymyositis) diagnosis. Having diseases makes me feel like I am slaying a dragon, it is a fight for your life!

      Have you had your iron checked? Many with CD have low iron and other deficiencies. If your doc has not yet taken blood work, I would certainly ask for it.

      That bla feeling, I get it too, but not as much now, a year and a half later. You don’t mention your age, I think it plays a roll in how fast we heal. The younger you are, the faster it will be to heal, but 3 months is not nearly enough time for any age to show much difference.
      I noticed waves of eating, healing, and weight gain. I will have sudden desires to eat 6 times a day, huge meals! Ravenous! Then one day, suddenly, I am not that hungry and am satisfied with “normal” sized meals with small snacks. The body will tell you what it needs when it needs it, if we listen. Some days I crave broccoli, other days the thought of eating makes me feel ill. Same goes for all the foods I eat. I get cravings for weird things but think it is the vitamins the body is calling for. It’s pretty cool actually! For a while I craved blueberries mixed in squash with cinnamon and a little maple syrup. It is a great dessert when that sweet tooth takes over.

      OMG you are NOT a wuss! This disease reeely sucks! Dying from diarrhea . . . what a way to go . . .
      What made it worse were all my friends, family, and my DOCTOR’s all said how great I looked after losing 40 pounds in 4 months~~this idea that women are more beautiful when thin and sick . . . (that’s a future rant).
      This month I finally got back on the BMI chart, woohoo!

      Give yourself some time, and really pay attention to what you put in your body. If you are a boxed food, gluten free person, then it will take a lot longer to heal. What your body needs now, more than ever, all the vitayums it can get, and that will not come out of a box, can, or bottle. If you are not already, eat minimally processed foods, foods from the produce area and plain meats dept and eat what is in season and organic when possible, and buy your food more often for optimal nutrition.

      Seriously, stay out of the gf cookie and cracker isles. They are not helping anyone heal. They are great in a pinch, but I find when I have eaten processed food, they make me want more, I am never satisfied after eating it. It is not the kind of fat I want in my body.

      That bla feeling is your bodies way of screaming for nutrition! I have to say it is a bit weird that I eat things like a huge bowl of chicken, kale, and squash for breakfast . . . that took a while to get used to, but my body is thanking me for it now. I know it is hard to be patient; waiting for the body to heal is frustrating, be kind to yourself.

      Peace

      Reply
      1. 13.1.1

        Pat

        Thanks so much for your reply, Dee. I have had my iron and B-12 etc checked and took an iron supplement for the first couple of months. But I have been lurking a lot (as in almost daily) in the GF aisle at the grocery store. I will take your advice and stop doing that. Breakfast and dinner aren’t too much of a challenge — it’s lunch and snack times where I head for convenience foods.

        The most frustrating part for me has been the lack of and/or conflicting information from my GP and gastroenterologist. My husband is a surgeon and after listening to me rant about the different sets of advice I’d received announced that the situation required a scientific brain which he has … and according to him, I don’t. He disappeared into his study with his laptop and came out 1 1/2 hours later, shaking his head and saying it was all too confusing! Jeez!

        So the most important takeaway from your email is that I need to just start listening to my own body and take it one day at a time, instead of expecting instant results. OK .. I can do this.

        Thanks again.

        Reply
        1. 13.1.1.1

          dee

          you are welcome :) Glad to help any time.

          be well!

          Reply

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