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All Fired Up

I am a calm person for the most part.  It takes a lot to get me worked up, but when I get worked up, look out. 

As I was checking out Twitter this afternoon, my pal, Jules of Jules Gluten Free, shared an article that was on Forbes.com.  The article is titled “What We’re (Not) Eating: A Potential Danger of Gluten-Free”.  I was a little perturbed before I even read the article, and then even more so after I finished reading.  I saw that Jules had left a comment and I went to add my 2 cents.  As usual, I had to log in or sign up to leave a comment.  What should be an easy task, is/was no easy feat on Forbes.com.  I am still waiting for access and am growing more & more impatient, so perhaps I’ll just post my comment here. 

Dear Megan Casserly (Blogger on Forbes.com):

After running into major roadblocks while trying to access Forbes.com to comment on the article you wrote “What We’re (Not) Eating: A Potential Danger of Gluten-Free”, I decided I would just write my comment here.  Just because select people have chosen to use Celiac Disease or gluten sensitivity to mask their eating disorder does not lessen the fact that there are millions of Americans who must follow this diet for legitimate health reasons.  One actually has nothing to do with the other.  You are comparing apples to oranges.  Anorexia Nervosa is a disease that can manifest itself in many ways.  Having suffered from Anorexia as a teen and again as an adult, I am here to tell you that I would do whatever I had to do not to eat.  I would tell people I had already eaten, I would say I had plans to eat later, etc.  However, eating gluten-free (having Celiac Disease) has/had absolutely nothing to do with my eating disorder; they are two separate conditions.  

Eating gluten-free is NOT a fad diet.  People with Celiac Disease or gluten sensitivity get sick when they eat gluten.  It may not happen immediately, but believe me, we pay for it. 

May is Celiac Disease awareness month, so maybe we should thank you for bringing even more awareness to Celiac Disease and the gluten-free diet.  Earlier this month, 1in133.org and its creators held the Gluten-free Labeling Summit in Washington, DC to get the attention of the FDA.

“In 2007, the Food Allergen Labeling and Consumer Protection Act (FALCPA) tasked the Food and Drug Administration (FDA) to finalize standards for gluten-free labeling. Four years later, the FDA has failed to fulfill that mandate. To the millions of Americans who eat gluten-free food, this inaction is a big deal.” 

Just check out what a BIG deal this is to so many people:

(source)

An excerpt from an email Jules sent to me:

Hi Kim –

Don’t know if you saw the TIME Mag article this week or not, but this goes along with that Forbes piece as really bad for the cause. It amazes me how there is REAL news (what could be bigger than a 1 ton cake?!) on GF and the FDA in DC and they’re not covering it, in favor of anything about stars or fads instead.

Time Magazine contacted me for an interview about 1in133, our event and the motivations for it, etc. I spent over an hour with the Time journalist (taking precious time from building the cake!) that day, and corresponded with her via email thereafter, offering her high res photos of the massive cake, or even of the Congresswomen or FDA Commissioner speaking at our event (what I considered to be the news-worthy illustrations for such an article). They declined, in favor of a cartoon drawing of a cracker box, labeled "Fad’s Gluten-Free Crackers."

The journalist made it clear from the beginning of our interview that her editor wanted a piece on why GF is a fad diet, and was particularly interested in getting quotes from those of us at the event about whether and why we are mad at people who eat GF when they don’t have to do so for medical reasons. Clearly, they weren’t able to get such quotes, but I nonetheless was unable to convince her that her story angle is already overdone and misses the point entirely.

I gave it a valiant try, but apparently she didn’t want to hear anything I had to say for over an hour (and she recorded my interview, as well) about the need for gluten-free standards at the federal level, the number of new companies entering the GF market just trying to get a piece of the $2.6 billion pie without care for cross-contamination, the fact that with any diet there are people who are on it for the wrong reasons but that doesn’t mean that we should ignore the millions of us who must be on the diet or for whom changing our diet works, the fact that eating GF can be as healthy as you make it (just like any other meal plan) … etc . Mainstream media (for the most part) write the story angle they want the public to hear. Period.

One positive note in all this though, is Kim O’Donnel, who took the time to write as substantively as she could (in the 500 words she was given by USA Today) about the true need for safe GF foods. You can find the piece here.

So, please, don’t label the gluten-free diet a danger, a fad diet, etc.  Respect it.  Thank your lucky stars that you don’t have to follow it and that you are fortunate enough to not have to scrutinize everything that goes into your mouth. 

Anorexia and other eating disorders are a real danger and are not to be taken lightly, but don’t blame the gluten-free diet.  An anorexic could just as easily claim that he or she is vegan/vegetarian, allergic to peanuts, shellfish, etc.  Those aren’t the causes of eating disorder; they are simply the excuse of the day.

Sincerely,

Kim Bouldin

Fired up Celiac and former anorexic

22 comments to All Fired Up

  • Thanks for this, Kim! I read the Forbes piece earlier today and was really bothered by it… Why is gluten intolerance/sensitivity and Celiac so hard to get right?

    You're right on! Thanks for posting.

  • This got me worked up, too. I am a very thin Celiac that became malnourished before diagnosis. Many people thought I was anorexic. Nope. Just starving even though I was eating a lot. I've also been close to many people with eating disorders (not to be taken lightly, as you say), but let's not mix the two! If the girls in question really DID have gluten intolerance, they obviously needed nutrition counseling. If they did not, glad they got to the root of the problem… but why the shoddy post on gluten intolerance/celiac. Even the picture of the oats… "oat grain husks are a source of gluten"??? Um, only if they've been hanging out with wheat proteins!

    I didn't hear anyone mention that undiagnosed food intolerances can cause or exacerbate eating disorders…. THAT would be a good article!

    • gfreeislife

      Kathleen – The author really needed more info and should have included more if she was going to write about this topice.

  • Renee

    Okay, I am fired up too! I am thin, Celiac and I have Gastroparesis which is basically a stomach that does not digest food well or in a timely fashion. I am on a very restricted diet. I can only eat a very small amount of fiber per day which takes out many fruits, vegetable and meat protein…all staples to the Celiac, and for a while i was only able to drink fluid. Eating disorders are very different from gastric disorders and diseases. Get it right Forbes, for some of us eating is really painful!

    • gfreeislife

      Renee – Exactly. It isn't always about what you see on the outside. Just like "You can't always judge a book by it's cover". There is much more to it.

      Kim

  • Wonderul emotive post, Kim. I am very proud to know you and you have my utmost respect. Thanks for sharing a bit of yourself with the world within this post.

  • tara

    Right on, Kim! I recently went off my gluten-free diet and my MS symptoms got a lot worse. Yes, I'm thin, but that's thanks to MS and how it caused me to lose an appetite. My gluten-free regimen is to feel better, to get a tiny bit of relief from the constant MS symptoms. It has nothing to do with an eating disorder, it's a choice for optimal health and well-being.

    • gfreeislife

      Tara,

      I am glad that you are getting some relief from the gluten-free diet. I pray that you continue to get relief.

      Kim

  • [...] A wonderful blog post from another CD friend  “So, please, don’t label the gluten-free diet a danger, a fad diet, etc.  Respect it.  Thank your lucky stars that you don’t have to follow it and that you are fortunate enough to not have to scrutinize everything that goes into your mouth. [...]

  • Jen

    Awesome Kim!!!! There are so many HORRIBLE articles out there about the diet and it makes me crazy. Thanks for writing this!! If I hadn't gone gluten free, there's a good chance I'd have had to have a section of my intestines removed by now and would be incredibly unhealthy. I thank God I found the diet and am healthier than ever!!! :) :)

    • gfreeislife

      Jen,

      I am thankful that you found the diet and are feeling better! Such a relief! I hate to hear about anyone suffering, especially from something as simple as food that can be removed from a diet.

      Kim

  • Esther

    Kim, if gluten-free is big enough for Time and Forbes to attack it, that means it’s BIG! More demand, more new foods, more restaurant participation, lower prices…I think any publicity is a good omen.

    • The problem Esther is that gluten-free is not what celiacs want to promote. They want to promote the seriousness of our auto-immune disease. Personally, I don't need more choice. I need to be taken seriously so I can keep my health and my sanity.

  • Krysten

    I was irritated that in the comments, the writer put there are restaurant cards to use when you eat out meaning the girls were hiding behind that excuse. I was glutened at my own wedding reception after repeatedly telling the staff planner my food had to be gf and she told me she had a niece with celiac so she understood. If as the bride I can't get a safe meal, how can I trust any restaurant 100%? It's not that easy, it's a gamble.

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