Today’s post (my 100th post by the way…who woulda thunk it??) is a simple shout-out to Giant Food Stores.

The label above is now going on all of their gluten-free items in their stores.

Wegmans does this and it is such a huge help when we go food shopping. And when I say “we” I really mean Mrs. Dude.

Not only are they including the label, but the literature we received from them shows me that they “get it”.  I’ve scanned the pamphlet and I’ll show it below.

But I’ll point out one section titled “Who should follow a gluten-free diet?”

And within this section, they have this little nugget: Following a strict gluten-free diet when not medically prescribed poses a significant risk for intolerant intake of folic acid, B vitamins, iron, calcium, vitamin D and fiber.

YES!!

And on their website, they have a gluten-free shopping list, gluten foods to avoid and a resources page with recipes, etc.

So kudos to you Giant. We’re getting there.

Here’s the pamphlet.

And another one bites the dust.

I have now added PF Chang’s to the list of restaurants I can no longer eat at. And as you can tell by the picture above, I’m quite sad about it.

First…a little PF Chang’s history. After my celiac diagnosis in 2007, I did not go out to eat for a few months. It was simply too difficult. And then I heard that PF Chang’s, which has a location just a few miles from my house at the time, had a gluten-free menu. I love Asian food. I missed eating out. It seemed like a match made in heaven.

I still have vivid memories of that first evening out…

I remember waiting for a table, very anxious about the ordeal. And my little Dudette put her hand on my knee and said “It’s ok Daddy. At least you don’t have cancer.” Little did she know at the time. Mrs. Dude and I had to contain ourselves from breaking out in ironic laughter.

I remember ordering and giving my big celiac speech for the first time.

I remember having my first, and last, Red Bridge beer.

I remember really enjoying the food, my family and the atmosphere and feeling almost normal.

And I remember thanking the waitress profusely when the meal was over, telling her it was my first time out since my diagnosis and actually tearing up as I was talking to her. To me, it was an emotional experience. To her, she probably thought I was nuts.

The next few times I visited PF Chang’s, it was all good. I felt safe (from a gluten point of view), the service was always exceptional, as was the food.

But then little things started happening.

One time, my food came out on the wrong plate. For those who don’t understand this, PF Chang’s has a different plate for their gluten-free dishes, which I love. But my food did not come out on that plate. So naturally, I questioned my server, who assured me it was gluten-free and was a tad put off that I asked her to go back in the kitchen and verify. It left a poor taste in my mouth.

And then, whenever I’d eat there, I’d start to feel like crap afterwards. I’m not saying I was being glutened (I’m not saying I wasn’t either) but I just didn’t feel well.

I know a lot of their dishes are high in fat and very high in salt, but it shouldn’t make me feel this bad.

My visits became less and less frequent and Mrs. Dude suggested I stay away from them permanently, which I have.

Until yesterday.

I had a meeting in northern Jersey and was headed back to the Dude Ranch at about 2 in the afternoon. I passed by a PF Chang’s and decided to give it a shot. It’s amazing how hunger can cloud your judgement.

I ordered the gluten-free chicken and broccoli dish with brown rice and told the waitress I was a “severe celiac”. I always use the word “severe” when I eat out, hoping it gets them to take me a bit more serious.

My dish came out. Looked good. Took a bite. Tasted fine. But it was really spicy?!?

The chicken and broccoli dish is not supposed to be spicy. I asked the waitress about it and she said they put the wrong sauce on it.

You’ve gotta be kidding me!!

She assured me the sauce was indeed gluten-free and came back a few minutes later with the correct meal.

Should I have eaten it at this point? I don’t know. But again, I was starving, I was already there and for the most part, I know they take the whole gluten-free thing pretty seriously, so I gave them the benefit of the doubt.

To make a long story short, I ate my lunch and enjoyed the heck out of it.

But as soon as I got in the car, I can’t begin to tell you how much my stomach hurt. Beyond painful. And not in a sour stomach kind of way, but in an “alien ready to explode out of my gut” kind of way. The pressure and the tightness was unbearable for the 20 minute drive home.

As soon as I got home, I had to lie down and I ended up sleeping for three hours.

I haven’t eaten since yesterday’s lunch.

And this morning, I feel out of it and Mrs. Dude says I look “pasty” (how’s that for a visual??)

Now this just shouldn’t happen after a lunch out.

So to you PF Chang’s…you had me but you lost me.

I sincerely appreciate the effort you put in for all celiacs, but our relationship has now come to an end.

I’m not sure what the PF stands for in your name, but for me it now means Painful Food.

(If you’ve had any good or bad experiences at PF Chang’s, would love to hear about it.)

As I mentioned in my blog post on Tuesday, I get emails from fellow celiacs asking for help. Your response on Tuesday was nothing short of incredible and it helped Denise (aka Mary) so much. She was beyond appreciative.

For that, I thank you.

I also realized that for every celiac that reaches out for help, there must be 100 more who suffer in silence; who are afraid to ask for help. So your contributions are also helping them.

Again, kudos to you. Our community seriously rocks!

Which brings me to today’s call for help. I will call her Susan. Her email to me is below. Her family thinks celiac is good because now she’ll be skinnier. You just can’t make this stuff up.

If you can take a few minutes and respond to her letter, you’ll be helping her and countless others.

————————————-

Hey Gluten Dude.

I don’t really know how to start this. I guess I’m just sending you this email because I haven’t talked about this to anyone.

I am 21 I’m a student nurse and when I was diagnosed with celiac a few weeks ago I didn’t know how to react.

The response from family and friends was “its ok you’ll be fine you; it’s just like any diet and the good thing is you’ll be healthier and skinnier.”

Not really knowing what to do I turned to the Internet and I found you.

The time when I found you, you had that article up and your thoughts on celiac and death. And in the attempt to think like my family, I realized how important this really is and that it’s a way of life, of survival.

I can’t say I haven’t been struggling. I haven’t told all my friends so I haven’t really gone out or gone to their houses.

I have lived life till recently with incredible tummy aches, various runs to the toilet, anxiety and depression because of this and the feeling of total exhaustion throughout the day. I have also had lactose intolerance ever since I can remember. I remember my mum trying to force me to have my daily dose of calcium through a huge glass of milk, it would totally kill me.

I would also be called lazy as I was constantly tired and couldn’t concentrate.

Now that I know where all this is coming from. I don’t actually know how to take it.

I would like to know if you have any advise to give me.

I would also like to know if you know anyone living in Australia with celiac that I could talk to.

What I liked about your website is the fact that there are people like you talking on behalf of us and that there are other people just like me everywhere. I am not alone and at least this makes me happy.

Thank you for your patience in reading all of this and thank you for your blog.

Hope to hear from you soon

Sincerely
Susan

What the heck is a Haiku you ask? In its simplest form, it’s a Japanese poem of seventeen syllables, in three lines of five, seven, and five.

And what on earth does it have to do with celiac disease? Absolutely nothing at all.

So then why am I writing a celiac Haiku? Well, when you post 31 blogs in 31 days, you need to think outside the box a bit. And I’m pretty confident this has not been done before. So even if it’s lame, I can still say it’s original.

Oh…and by the way, I am so game for your Haiku as well. All I ask for is one verse if you’ve got it inside you. It’s asking a lot, but it would be so cool to see what you come up with.

So I present to you, the first ever Celiac Haiku.

I used to drink beer
Now Titos is my best friend
I love you Titos

Pasta oh pasta
You were so soft this morning
Now you are granite

Time for a sandwich
But when I take my first bite
The bread falls apart

Not since I was two
Have I needed so many
Naps during the day

There is a bread crumb
On my gluten free counter
Time to disinfect

You told me before??
You’ll have to say it again
Yes…I have brain fog

Coffee and sushi
You are two of my best friends
Thank god you’re g-free

Order food naked
I will leave it up to you
What that really means

Dominos pizza
That was a half assed attempt
Going gluten free

Miss Kardashian
How was the In-n-Out Bun?
Gluten free?? Oh…Hi!!

What’s Gluten Relief?
It’s a scam for the ages
Please don’t believe it

The NFCA
Your intentions were honest
Please drop the amber

Celiac disease
It’s an autoimmune thing
A pain in my ass

There’s much we can have
Focus on the positive
It could be much worse

The month is now May
It’s Celiac Awareness
Let’s make it all year

To all celiacs
Let us journey together
Power in numbers

Mrs. Dude thank you
It’s not easy living with
Somebody like me

And to my Dudettes
May you be spared the curse of
The celiac gene

I get a decent amount of emails from fellow celiacs asking for help/advice.

If it’s medical question, I usually try to persuade them to find a GI who understands celiac disease (good luck with that one) as I’m reticent to give out any medical advice since I am not really qualified (though I did stay at a Howard Johnson’s last night.)

But sometimes I get emails asking for emotional advice.

I received two emails this week that just tore me apart. Both dealt with a recently diagnosed celiac whose family does not take the disease seriously…at all.

I provided some advice, but I also told them I would post their stories on my blog as we have an awesome community who would love to offer support and guidance (that would be you folks).

The first letter is below. It is from Mary (not her real name.) I will post the second one another day this week.

Please leave a comment and help Mary. Thanks.

———————————————–

Gluten Dude,

I have an ongoing issue and I’m not quite sure how to handle it.

Ever since being diagnosed with Celiac disease and DH, my family has treated me horribly about my disease. It has gone as far as being called a hypochondriac; that I use it as a crutch to not see family; that I’m afraid of dying.

I go to family get togethers and every stinkin time it’s comments like “oh well, just a little wont hurt” or “maybe I’ll grow out of it” or “you can have rice and beans, can’t you?”

I have explained so many times and they just don’t get it. And to even bring up cross contamination, oh man.

The last time I tried to bring a gluten free dish, that person over-rode me and assumed gf food was nasty and had someone else bring a gluten filled dish.

I’ve tried to just enjoy being with family without the food but it just keeps comin up and I end up being called the things I had mentioned above.

I know I’m not those things they say and I’m simply looking out for my health.

So my question is “How do you cope in this type of situation when all methods to detour it fail?”

My family thinks I’m being a B****, a hypochondriac, and that I’m not livin life and shelling up; that I’m using it as a crutch.

I show up and am so fed up with the stupid comments after explaining like a broken record and having them assume what they think I am.

Please give me some advice because I really need it.

Thanks.

Mary

There is a link at the end of this post to sign a petition to “Help Ditch NFCA’s Amber Designation!” Please consider signing it.

Question 1: When you see an amber traffic light, what’s your first reaction? CAUTION

Question 2: When you see that a restaurant is endorsed by the NFCA, what’s your first thought? MUST BE SAFE FOR A CELIAC

Question 3: Why would the NFCA have an Amber Designation as part of their GREAT Kitchens program when Amber means it’s not safe for celiacs??

I am not here to attack the NFCA. At all.

They do a lot of wonderful things to raise celiac awareness and are a great organization to have in our corner.

But I, and A LOT of others in the gluten-free community, feel that they have simply dropped the ball on this one in a major, major way, and we are asking for your help in having the NFCA drop their Amber Designation.

Here is a quick recap of what is going on…

To promote a greater level of food safety for those with celiac disease and non-celiac gluten sensitivity, the National Foundation for Celiac Awareness (NFCA) introduced a tiered credentialing system for restaurants that will enable gluten-free consumers to understand restaurant practices through a voluntary and transparent disclosure process.

As part of the program, they have two designations.

1) GREEN. This means the NFCA has approved them for the following: Ingredient Verification, Comprehensive Training, Strict Cross-Contamination Controls

And here is the stamp of approval for the Green Designation:

Ok…so far, so good.

2) AMBER. And here is where we run into trouble. Amber means the NFCA approves them for the following: Ingredient Verification and Basic Server Training, but Kitchen practices may vary widely

And here is the stamp for the Amber Designation:

What words jump out at you? GLUTEN FREE

I look at that and it’s all I see.

And when somebody sees gluten-free, what do they think? That’s it’s safe for celiacs.

So my question to the NFCA is this?

Why would you ever have any kind of designation that says Gluten Free when it’s not safe for celiacs or people with gluten issues? 

I’m not saying they have ulterior motives, but I cannot think of one single explanation for this.

And of course, this all came to a boil when they endorsed Domino’s new gluten-free pizza, which is as far from safe for celiacs as you can get. And despite the clamor from our community, they have refused to budge and seem to be burying themselves deeper and deeper.

I’ve said this before and I’ll keep saying it until I’m blue in the face: Gluten-free should mean gluten-free. Period. Not kind of gluten-free. Not mostly gluten-free. Not gluten-free, but with a warning.

Why is this so difficult to comprehend and more importantly, why is it so difficult to enforce?

So please help all of those who need to be gluten-free for health reasons.

Sign the petition below and help us ditch NFCA’s confusing, potentially dangerous, Amber Designation.

Thank you.

A special shout-out today to some of my favorite female gluten-free bloggers.

Whether you are a mom or not, today we celebrate you!

Thank you for sharing your stories.

Thank you for opening your hearts.

Thank you for sharing your recipes.

Thank you for spreading awareness.

Thank you for being such awesome voices in our community.

I KNOW I forgot some of you. It either means I couldn’t find a picture or I spaced out. My apologies in advance.

And of course, an extra special shout out to my mom, for whom if it wasn’t for her genes, I wouldn’t have celiac disease.

Totally kidding mom…thanks for EVERYTHING. I love you!

I was hoping to do a positive, life is good type of post today after a long week of media hell (because life IS good dammit). But alas i had to post this…

In response to my Today Show rant from Thursday, where the guest doctor on the show called celiac disease “trendy”, a reader shared her celiac story on my blog. She was beyond disgusted on what she saw on The Today Show, as we all were.

Her story is the result of what happens when celiac disease is not taken seriously and patients are not listened to.

I want to dedicate today’s blog post to her. Please read her story below and share it…it’s an important story to tell.

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Hi Gluten dude! I feel a bit of a rant coming on….

It’s misinformed, arrogant “doctors” like this who kept me from being properly diagnosed for many years. I suspect it keeps millions from being diagnosed properly.

From late 2007-late 2010, I tried to find out why I was in so much debilitating pain and dropping weight so quickly. I lost a drastic 90 lbs. because I could not eat or keep anything in me. My entire GI tract BURNED from mouth to rectum and even water burned doing down.

One doctor told me “congratulations on your weight loss”.

Another said I needed to “do volunteer work to get my mind off it all.” (I could not even dress myself or tie my shoes)

Another encouraged me to work out at a gym. I tried but kept feeling faint on the treadmill and then, my legs and back went numb.

I heard “it’s just menopause”, fibromyalgia, the catch-all “IBS and GERD””…and my favorite, “it’s just stress” because my father had just died.

I was offered more drugs than you can imagine: pain meds, anti-depressants, anti-anxiety meds, sleep meds, antacids, thyroid meds I did not need —and even sent to a psychiatrist– to get me to shut up and leave the office. Drugs made my already ripped up gut worse and so I did not take them.

I have no psychiatric problems, but I sure as hell thought I would lose my mind.

We spent $30K out- of -pocket on tests, physical therapy, alternative doctors–anything to to help me get well. NOTHING worked.

I lost major muscle mass and tone, my ability to comprehend, articulate and recall information.

I had difficulty remembering how to cook, balance a checkbook and drive my car, and I suffered insomnia, sores, burning skin, and severe burning neuropathy, numbness, parasthesia and weakness. I banged into walls and tripped down stairs, becoming covered in bruises. I was propped on the toilet when I was passing everything and washed down with cold clothes to keep me conscious.

My poor husband thought I was dying.

I had horrid joint, bone and muscle pain, pelvic floor pain, and kidney and liver pain. I was unable to walk the length of my driveway without gasping for breath, acquiring anemia, losing my hair. I was unable to walk, stand, lie down or stand without agonizing pain.

No doctor could tell me what was wrong. FOR 3 YEARS.

Our life came to a stand still as my husband watched helplessly while I went downhill. I forced myself to keep moving so my muscles would not atrophy as my buttocks and muscles wasted. I dragged myself around and researched endlessly to figure out what the hell was going on.

I was told “it could not be celiac” because my blood panel was negative and “no one in my family has it”. (well, someone has to be diagnosed first for that statement to be relevant and blood panels are negative often enough to keep people undiagnosed!) The GI doctor I saw for years did an endoscopy yes, but failed to biopsy me while down there, yet t I did not know this until a year later when I finally saw the report. (lesson? never trust the word of a “nurse practitioner”–ask for the report and read it yourself!)

They were all Wrong . Wrong. Wrong.

I figured it out myself and brought it back to my PC doc and the rest is history. So many things in my life are explained now: migraines, miscarriages, inability to have children, gall bladder disease, etc, etc.

The very celiac-savvy GI doctor who takes care of me now said he feels so bad for all I went through. He looked at pictures of me from that time and taking into account my own medical and family history, especially that of my father’s, my genes (HLA-DQ2) and the dozens of AI diseases in my family —and said “couldn’t anyone SEE it? You’re a walking Celiac”

I said “Doc, this disease tried to kill me” and if I had not been so relentless, I would either be dead or in a mental health ward by now.

I hope I can get my muscles and my life and “me” back, but the road to recovery has not been easy. I never say die. Now, to make sense of the nightmare we went through, I focus on helping others who are struggling for a proper diagnosis.

CURRENT RESEARCH and the well-respected Celiac experts (like Dr. Fasano) KNOW there is more to diagnosing it than the Celiac Panel and the “gold standard” biopsy.

Some celiacs (like me) blood test negative for various reasons. A stroll through PubMed articles will explain that for anyone who is interested. My doc will biopsy me next month in hopes I do not have refractory sprue from years of being undiagnosed. He was waiting for me to be strong enough to endure the procedure.

There is no question that something has to change in the way the medical community views CD.

While our disease is “treatable” (but not curable), as are most Autoimmune diseases, the serious complications and tendency towards developing other AI diseases (like diabetes, Rheumatoid arthritis, lupus, hypothyroidism et. al ) as well as lymphoma IN CONJUNCTION WITH LONG UN-DXED CD makes this a worthy foe indeed. It’s nothing to take lightly nor is it “easy” for many of us.

So, this disease is “trendy”?? Oooh, so THAT’s what I was during those lost years in what I call Gluten Head Hell–I was being “trendy”. My husband is delighted to hear this news. Here we thought, I was just dying and no one gave a rat’s ass.

Being “trendy” makes it all better now.

Lady, you do not know what the hell you are talking about and I do not know how you call yourself a doctor. Pick up a medical journal once and awhile and learn why this disease is finally becoming diagnosed PROPERLY. You should be ashamed of your reckless comments, but since you spend your time appearing on TV shows instead of keeping current with medical journals, I doubt you have given any thought lately to your oath “First Do No Harm”.

Gluten dude, thanks so much for letting me vent. I feel much better now :>)

In honor of Mother’s Day, I thought I’d have Mrs. Dude handle the blogging duties today and give the scoop of what it’s truly like living with a celiac.

Oh, and by the way, the outfits in the picture above are from last Halloween, not from a night when the kids were out. We have totally different costumes for those nights

Mrs. Dude, take it away.

—————–

I never thought I would hear myself say “DON’T KISS ME. I JUST ATE A BAGEL!”

I never thought I would worry about what color sponge my kids use (on that rare occasion when they wash the dishes.)

I never thought that once my kids outgrew the diaper bag years, I’d have to pack one for my husband (for food…not diapers).

I never thought I would be the hostess that would tackle my guests before they reached into the icemaker without using the scooper.

I never thought I’d use the word “contaminate” so much.

I never thought I would spend so much time hating a tiny little protein that you can’t even see but still makes Gluten Boy sick!

I never thought I’d have to dissect the previous nine meals we ate when he doesn’t feel well.

I never thought I would become the supermarket whore that I have become. I bop from one to another without looking back!

I never thought we would be the ones that food servers cringe at.

I never thought I would need my reading glasses to food shop!

I never thought Google would become such an imperative ingredient in my cooking.

I never thought I’d get so mad when the Dude emptied the dishwasher this week and put “his” cutting board in the girl’s bread drawer.

I never thought I’d have to worry about the dogs licking his face (our dogs are NOT gluten free).

I never thought I’d be married to someone with the nickname “Dude”.

I never thought I would come to respect a group of people I have never met as much as I respect the celiac community.

I never thought I would say this, but my gluten boy has really turned into Gluten Dude. I love what his voice/rants have added to the celiac community. He is passionate about everything in life (which can be exhausting…good thing he doesn’t have a blog about politics!!)

Happy Mother’s Day everyone!

I know what you’re thinking…

“C’mon Dude, not another rant about how celiacs aren’t getting the respect they deserve!! You’re beating a dead horse here.”

And I couldn’t agree more. I’m sick of writing about this stuff.

But more importantly, I’m even more sick of the reasons why I need to write about it.

And as long as our wonderful entertainment industry keeps trivializing celiac disease, I’ll keep writing these posts and doing my part to raise awareness and call these [insert bad word] people out.

If you have not already, watch the above video. It’s all of five seconds. I apologize for the crappy quality, but I recorded from my phone just the one segment which blew me away and spared you the rest of the video. You’re welcome.

If you just don’t feel like watching the video (and I don’t blame you), here’s the transcript:

Annoying Host: You hear a lot about celiac disease these days. What is that exactly?

More Annoying Doctor: That’s a new hot disease these days.

Annoying Host: Yeah…it’s a trendy disease (with an eye roll).

Were they being tongue-in-cheek? Perhaps.

But here is my question.

Would they have called AIDS “trendy” in 1985?

Would they have called polio “trendy” in 1901?

Would anybody, anywhere EVER call cancer “trendy”?

Of course not.

So why can’t celiac disease get the same goddamned respect?

And for those of you who will jump at me for comparing celiac disease to those other very serious diseases, I get it. Celiac is treatable (not curable) with a strict diet while the other diseases are much more difficult to treat and have a higher fatality rate.

But why trivialize it when it is indeed a very serious autoimmune disease that is extremely difficult to live with? What’s the point?

And by the way, the doctor went on to say that celiac disease is “very easy to address. All you need to do is cut out the gluten and your symptoms resolve altogether.”

Really? That’s it?? Wow…I wish I knew it was that easy. Thank you so much doctor. I guess all of my suffering even though I’m gluten free is all in my head.

And the ONLY symptoms she mentioned were bloating, cramping and diarrhea. Like all we deal with is a tummy ache.

So to The Today Show…you get an EPIC FAIL for helping to perpetuate the myth that celiac is a trendy disease that is not to be taken seriously. May your ratings continue to fall as they have been.

And to everyone else who knows the truth about our disease, please share this post. Their twittername is @todayshow. Send them this link and tell them we deserve an apology, using whatever spicy language you would like.