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ENOUGH WITH THE GLUTEN JOKES

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I am a crazy Marvel fan, but they just pushed me over the edge. A week or so ago I binged watched Jessica Jones, Season 2. In one scene, her friend Trish Walker who is a radio talk show host and also happens to be on a drug-induced rage loses it in the middle of an interview with a gluten-free writer. Said writer is basically an idiot, but I think the greater point is that the scene represents society’s uninformed rage and condescension about gluten-free eating.

Trish asks the writer – “How many people die a year from celiac disease?” The writer then incorrectly says, “Oh, it’s not a direct cause of death.”  Wrong!!!! Trish – “Your books says gluten can mean life or death”. Stupid writer – “I didn’t mean that literally.” Guess what? You’re still wrong. Trish – “So would you says it’s worse than gun violence or what’s happening in Syria?” After some back and forth, Trish says, “You clearly care about gluten deeply, but here’s the thing. It doesn’t matter.”

My heart sank when I watch this, but I was going through the first stage of grief: denial. Trish then goes on a drug induced rage, so I justified it to myself. She is clearly an asshole, so when she says gluten doesn’t matter, she is just clearly being an asshole.

Flash forward like ONE WEEK and my first watch of the new Deadpool trailer this morning. Guess what? GLUTEN JOKES. IN THE TRAILER. I can only imagine how the rest of the movie will be.

Deadpool says to his girlfriend on entering the house, “Sorry I’m late. I was rounding up all the gluten in the world and launching it into space where it can’t hurt us ever again.”

HAHAHAHAHAHAHAHAHA. Not. The irony here is that if Deadpool could actually do this, he would truly be my superhero. (Although how much would that suck for the rest of the world? I’m not too sure right now – seems like people who make fun of celiacs deserve a gluten-free world).  Laughter is not what I’m feeling after watching these two scenes.

Without launching into a bunch of swear words and throwing my laptop at the television, I’ll just copy and paste the note I just emailed to Marvel:

I can no longer defend your gluten jokes to the celiac community. After the Jessica Jones episode, I was shocked to see another gluten joke in the Deadpool trailer. I’m not a Marvel subscriber, but believe me, I own every movie and tv show and watch them regularly. I love everything Marvel, and I am a celiac patient. I understand the temptation of making fun of people who don’t have celiac or gluten sensitivity and choose not to eat gluten because one of the Kardashians did it, or they read on a supermarket tabloid that removing gluten from your diet is part of a miracle cure diet that will help you lose ten pounds tomorrow. Media organizations like yours NEVER differentiate between these trendy folks who choose to not eat gluten and celiac patients whose lives are at risk if we do eat gluten, even molecules of gluten. I often tell people that if I wasn’t diagnosed with celiac, I’d go to a gluten spa tomorrow, bathe in the stuff and shove as much of it down my throat as possible. Let’s face it – gluten is delicious, and I can never eat a molecule of it again.

From BeyondCeliac: “Celiac disease is a serious, genetic autoimmune disorder triggered by consuming a protein called gluten, which is found in wheat, barley and rye. When a person with celiac eats gluten, the protein interferes with the absorption of nutrients from food by damaging a part of the small intestine called villi. Damaged villi make it nearly impossible for the body to absorb nutrients into the bloodstream, leading to malnourishment and a host of other problems including some cancers, thyroid disease, osteoporosis, infertility and the onset of other autoimmune diseases.” Not really that funny, is it?

Did you know that it is estimated that 1% of people in the United States have celiac disease, but 83% of those are undiagnosed? Did you know that celiac patents can die from intestinal cancer due to celiac disease? Did you know that the presence of less than 20 parts per million of gluten in food can make someone with celiac very sick? That means it can be extremely risky to eat anywhere where gluten is present in the kitchen, whether it is actively put in the food or not? (Cross-contamination – learn about it). Did you know that celiac disease is totally disruptive to celiac’s lives and can be disabling? Do you know that there is only one treatment for celiac – never eat a molecule of gluten again? Do you know how hard that is? Can you imagine being a kid who can’t eat any food at a birthday party or with your friends at school? Can you imagine how it feels to go to a Marvel movie with your friends, having to explain to them on the way in why you can’t eat the popcorn or other snacks, and then have your hero Deadpool make fun of your very serious, deadly disease right on the screen in front of said friends? It’s hard enough to be a kid, and there are a lot of kids who look up to Marvel. I can only hope that the Marvel writers who think it’s hilarious to keep making fun of our disease are in the undiagnosed 83% and will eventually be diagnosed and realize the hard way that celiac disease is not funny. Karma’s a bitch. Maybe that’s the only way to get your writers to open their eyes? Actually I wouldn’t wish this disease on my worst enemy, so I hope none of you have it.

I demand a response to this email with a statement of what Marvel is going to do or say about celiac disease and gluten jokes moving forward. If you are going to profit from making fun of our disease, I expect Marvel to make a donation of said profit to celiac research, so that we can finally find treatments and a cure for our hilarious disease. Our disease is under attack from all forms of entertainment. I can no longer stay quiet, I no longer respect Marvel, and the Marvel heroes are no longer my heroes.

Thank you.

http://www.cureceliacdisease.org
https://www.beyondceliac.org
https://glutendude.com
My site: https://glutenfreebeerbabe.com

If anyone else would like to contact them, here’s the webpage I used. https://marvel.com/help/contact  BUT IF ANYONE KNOWS HOW I CAN DIRECTLY CONTACT THE MARVEL WRITER’S ROOM, PLEASE LET ME KNOW!

Yeast Options for Gluten Free Beer

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img_0281In honor of #NationalBeerDay last Friday, this post from Gluten Free Watchdog is very timely. Thanks as always to Tricia for her amazing work. For those of you who can, subscribe to her website for the most up-to-date education and laboratory testing of the g-f food we love to eat.

Anyone who has brewed beer is familiar with the little liquid yeast bottles pictured above. Yeast is yeast is yeast, right? And yeast is g-f, so now worries. With all things celiac, it’s just not that simple. Who knew that yeast is often grown on barley? (News flash: I didn’t). I did know that yeast is also collected from beer that has been already brewed, so if it’s gluten-full beer, that seems like a bad option. And since beer is not regulated by the FDA for gluten content, and ingredient listing on labels is optional, it sure is a tricky industry for celiacs.

A statement by Tricia’s interviewee in this article reminds all of us celiacs that when asking people who make our food and drink if we are able to consume it, it’s equally important how the person answers our questions as to the content of those answers. Does this person know what celiac is? Has this company thoroughly researched its ingredients? Do they truly know about cross-contamination and how dangerous it is to celiacs? Sometimes it’s even just the “vibe” or feeling you get from a person. Who can forget this conversation, although an easy one to figure out?

One of my goals this year is to brew a batch of gluten-free beer. When I was diagnosed with celiac two and a half years ago, I wanted to sell all of my home brewing equipment and give up. Then I started noticing that there are a lot of g-f home brewing kits and ingredients out there. This article about yeast is certainly another piece in the puzzle and shows how much research I still have to do before I get brewing! That is, if I can get my health to the point where I can brew again. I’m not there yet, and this weekend I was bedridden with one of the worst migraines I’ve had in a long time, combined with some kind of stomach flu/fever. It’s hard to do anything besides work and basic personal care when one is this sick, but as other chronically ill patients and pain patients know, we just get back on the horse on a daily or hourly basis and try to put one foot forward again (or is that the horse’s foot we put forward)?

Happy brewing, cooking and eating celiac people!

knight-clip-art-in-vector-or-eps-format-free-clipart-panda-free-JuJs6d-clipart

Gluten Free Confusion

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I’ve been meaning to share my conversation with the person at the counter of a local BBQ restaurant a few months back.

Me: I have celiac disease. Do you have anything without gluten?

Her: <crickets chirping>

Me: Ummm, let’s see. Maybe if I suggest something, you can tell me if it has gluten.

Her: What about macaroni and cheese? Cheese doesn’t have gluten, right?

Me: That’s ok. I’m not hungry.

See, having celiac disease can be so amusing!

Gluten-Reduced Beer

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I have made a personal decision to not drink gluten-reduced beer.  I know it’s controversial, but since my Tissue Transglutaminase IGG has doubled, even though I remain 100% g-f, I’m being extra careful.  This report is one of the many that I have read that led to my decision.  I am a paid member of GFWD, so I’m hoping you can read this:

Can Individuals with Celiac Disease Drink Barley-Based “Gluten-Removed” Beers such as Omission? A Gluten Free Watchdog Special Report

Gluten Free Craft Beer!

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Have you all seen this story in Allergic Living? Yes, I now subscribe to a magazine called Allergic Living. I thought I was a nerd when I subscribed to Cooking Light, which I recently cancelled. I used to think – well, I can just make any recipes with gluten, and substitute other things. Then I thought – why? I now subscribed to magazines that have g-f recipes to begin with….

Anyhow!!! Back to the beer – check this awesomeness out!  I have tried Ground Breaker’s IPA in cans, and it rocks….

The Craft Brewmasters Who Are Getting Gluten-Free Beer Right

Extension of Comment Period for Proposed Rule for Gluten-Free Labeling of Fermented or Hydrolyzed Foods

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The FDA has extended the comment period for its “Proposed Rule for Gluten-Free Labeling of Fermented or Hydrolyzed Foods“. (Thanks to Virginie for the link)! It’s a little difficult for me to translate the political speak here, but I think what they are proposing is to extend their rules for gluten-free labeling of food to fermented or hydrolyzed foods. Fermented foods includes BEER! Some of the points of the proposal as far as I can tell are:

  • The”August 5, 2013 final rule” is where the FDA established section 101.91 to define the term “gluten-free” for voluntary use in the labeling of foods
  • The 2013 rule is voluntary and this new rule for fermented & hydrolyzed foods is voluntary too
  • The 2013 rule’s definition of “gluten-free,” is that foods are either inherently gluten-free or they do not include any of the following:
    • Ingredients that are gluten-containing grains
    • Ingredients derived from a gluten-containing grain that have not been processed to remove gluten
    • Ingredients derived from a gluten-containing grain that have been processed to remove gluten if use of that ingredient results in the presence of 20 parts per million (ppm) or more gluten in the food
    • In either case, any unavoidable presence of gluten must be less than 20 ppm.

If I am reading this correctly, that first item would be important for g-f beers. Gluten-reduced beers contain barley, which is a gluten-containing grain. So according to this, the gluten-reduced beers would not be able to be labeled gluten-free. But I have a really bad feeling that I am reading that wrong, and they will allow the g-f label if the manufacturer maintains records showing that the product had gluten removed down to the 20 ppm level. This is the same policy that currently regulates g-f labeling of food.  If it has less than 20ppm of gluten, it can be labeled g-f.

Personally, I think that food and drink containing grains that contain gluten should not be allowed to be labeled g-f, no matter how processed to remove gluten they are. (I have seen voluntary labeling of these foods as “Gluten-Reduced”, which I think is the proper way to label these products). I also don’t think that food and drink that contains up to 20 ppm of gluten should be allowed to be labeled g-f, but again, that’s my opinion. Personally, I am trying to switch to eating and drinking 100% certified g-f products, as in no gluten whatsoever goes in my body. Not gluten-contaminated food, not gluten-reduced food, not up to 20 ppm of gluten food. Call me picky, but I have a disease that requires I don’t eat any gluten, and I want to feel better already, damn-it!

But no matter what your opinion, the point of my post (sorry if it’s not clear) is that we can all express our opinions to the FDA. You have until April 25th!  Here’s the link:

Food Labeling; Gluten-Free Labeling of Fermented or Hydrolyzed Foods; Reopening of the Comment Period

Review of Copita Restaurant, Sausalito, CA

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Finally ate at Copita in Sausalito. Suzi took me for my birthday – thanks Suz! I think I had too high of expectations, this being a “100% gluten free menu”, so I was disappointed. Firstly, our server was terrible. She hardly said two words, was never around & made us feel very unwelcome. Any server who never asks if you want a second drink when your first one is sitting empty for an hour (literally) is just…just…stupid. Even for selfish reasons, such as an increase in the total bill will result in a bigger tip, right? Drinks are an easy way to greatly increase the total bill, right? The busboys were good, but cleared away our food and empty drinks quickly, and then with no server, we felt like they just wanted us to leave. We had to then ask for a dessert menu, of course. Anyway, the food. It indeed seems to be gluten free. Almost. I find it fascinating and very frustrating that they go to the trouble to have a completely g-f menu, and then they use Ommission gluten-reduced beer to make a batter for a few of the fried dishes. (And contaminate the fryer while they’re at it). Why? It’s so bizarre! They add gluten to a gluten-free menu when they could use truly g-f beer or seltzer, which I believe is a perfectly good substitute in fried dishes.  

Seeing Ommission on the food menu gave me a bit of hope for ordering a g-f beer, but then a second really weird thing happened. Not only do they not have g-f beer on the g-f menu, they don’t even have Ommission. SO…. They use Ommission as an ingredient but don’t have it on the beer menu? I wouldn’t drink it anyway, but hmmmmmm.The food tasted really good. There were limited options for me, because of my other many allergies, but I was able to order the carnitas. Unfortunately, compared to Marinitas’ carnitas, well, it didn’t really compare, and it was about 1/4 of the amount you are served at Marinitas. But it was good. Suzi ordered the chicken enchiladas, which I wanted as well, but the sauce is made with ground almonds, another food I can’t eat. BTW when I asked about the almonds and if they could be kept out, our wonderful server said, “No. They’re ground in the sauce.” Then crickets. No suggestions, no questions about my allergies, nothing. Anyway, Suzi said the enchiladas were delicious. The margaritas were also wonderful and shaken at table side, for what that’s worth.  

So, for the price ($9 for guac? $5 for chips?), I expect at least decent service. For a well advertised g-f restaurant, I’d expect them to have a clue about issues for celiacs and other allergens, like most of us don’t drink gluten-reduced beer and don’t want it in our g-f food. But the food and drinks are delicious. Still, I’d rather go to Marinitas in San Anselmo any day of the week….

http://www.copitarestaurant.com

http://marinitas.net

Willkommen!

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I’m Sara, and I’m a celiac. (Insert – “Hi Sara!”)  I was diagnosed over a year ago. Celiac disease is “when eating certain types of grains sets off an immune mediated response that causes measurable damage to the small intestine. This, in turn, interferes with the small intestine’s ability to absorb nutrients in food, leading to malnutrition and a variety of other complications.” Blah blah blah – it sucks. Big time. No wheat. No rye. No barley ever again. Not even a molecule.

The one thing I really, really, really (I’m using the word “really” here three times. Really. A lot. Really.) did not want to give up was beer. I’ve been a beer geek, since I was 18, errrr, I mean 21. Almost thirty years later, I’d guess I’ve tasted more beer than most people taste in a lifetime. I even brewed my own! Since I have quite a few health issues, including my worst – chronic daily migraine – I decided to go completely gluten-free for the rest of my life. Period. Good-bye bread, good-bye pasta, and gulp. Good-bye beer. I packed up my brewing equipment and was ready to sell it on Craig’s List.

But wait! Along with other wonderful, new gluten-free foods (including bread (sort-of) and pasta), there is a burgeoning gluten-free beer industry that reminds me of the craft brewing days of the 80’s and 90’s. Experimental brewers who create beer like you’ve never tasted before! Some really good, and some really bad. Many questions bubbled up into my mind while trying these, um, interesting brews. What the hell is sorghum? Can a celiac drink gluten-free beer made from barley? Is sorghum malt just like barley malt? Some of us may wonder just how beer is made in the first place. And most importantly, can we ever drink beer again that adheres to the Reinheitsgebot? Ummmm, WTF? (The answer is no. I think.)

Here starts my gluten-free beer quest for knowledge. Hopefully I’ll be able to taste g-f beers from around the world! You know that the best way to research beer is to drink as much of it as possible, right? I hope you’ll join me on this intriguing voyage. Let me know if you have questions along the way, and I will try to find the answers. And most exciting of all, let’s get back to drinking some good beer.

Prost!

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Please see my “About” page for great g-f links