An Open Letter to Meghan Casserly

Dear Ms. Casserly,

I am appalled at your recent post, What We’re (Not) Eating: A potential Danger of Gluten-Free.  I find it highly irresponsible to portray the gluten-free diet as “restrictive” and a “danger” even if your intent was to shed light on those who are using it as a cover for an eating disorder.   Being on a gluten-free diet because it causes ill-health and using a diagnosis to continue a destructive pattern of anorexia or bulemia are two totally different things.   I know the seriousness of eating disorders.  I have a degree in Psychology and had the fortune to learn from a professor who is a contributor to the DSM specifically on eating disorders.  Eating disorders are no joke.  Neither is having to eat gluten-free because it has caused numerous health problems throughout your life.

I suffered with migraines my entire life.  Something I resigned myself to living with for the rest of my days.  I was even tested for Lupus after the migraines became daily occurrences in 1998.  I started having vertigo spells in college.  Chest pains and heart palpitations started after college and stumped doctors.  I was diagnosed with IBS in 2000 after repeated testing turned up nothing.  Then, in 2009, I was diagnosed with Hypothyroidism, Anemia, Iron Deficiency, and Vitamin D Deficiency when I found myself fatigued every single day.  I worked 15 hours a week and I still crawled into bed when I got home from work and I stayed there until I absolutely had to get up.  After starting Synthroid, feet and leg pain started and my fatigue was worse.  Thankfully, my Naturopath connected the decline to the Synthroid and I was able to get off the Synthroid, on supplements and start improving.  However, I still wasn’t all better.  Spending a day at Disneyland with my best friend and her family wiped me out.  Doctors told me to get more exercise to improve my energy, yet more exercise just made it worse.

Finally, I went off gluten after researching the connection between gluten and chronic illnesses like Hypothyroidism.  I did it a little backwards, I know.  But after so much testing, if taking a simple protein out of my diet would make me better, I was willing to do it rather than go through more invasive testing.  Besides, I was already eating whole foods.  A diet where a lot of gluten was already naturally removed.  A diet that may look restrictive from an American perspective because I wasn’t eating packaged or processed foods with the exception of sprouted grain breads/buns and whole wheat pasta.  I wasn’t deprived at all.

Just six weeks after being gluten-free, I had only one symptom of my Hypothyroidism still sticking around.  Cold hands and feet/getting colder faster than others.  No vertigo.  No migraines.  No chest pain.  No heart palpitations.  No nothing.  I felt better than ever.  I actually gained health I never had through removing gluten from my diet.

This is a serious diet and too often, mainstream media demonizes the diet because some people are using it as a fad.  Now you have demonized it because some are using it as a cover for eating disorders.  This only serves to misinform the general public, most of whom have no idea what gluten is, what it is in, and why some people have to remove it from their diet.  This is why the “general public has come to see [gluten] as bad.”  The gluten-free community is NOT happy when anyone speaks out against this necessary diet for those of us who cannot tolerate even a crumb of gluten.  Quite frankly, you pissed me off.

In trying to make your point, you used the following quote from a site:

“Hi all. I wanted to share my secret with all of you. I told everyone I was going to the Dr. because I was having stomach issues. I never went and then a week l8r I told everyone that it was suspected that I was gluten intolerant. It’s extremely common and Gluten is in EVERYTHING. It’s in almost all salad dressings, it’s in most marinades, soy sauce, breads, noodles, beer, oatmeal, almost All cereals just everything. You can’t eat out because you can get glutened through cross contamination as well. You can’t eat anything at fast food places except salad. Even Mc D’s chicken on salad has gluten. My sister has it and she lost a bunch of weight because there is nothing she can eat and it’s just such a common allergy no one 2nd guesses me. Hope u guys are all well and good luck!”

And you ended your post with:

“What’s left to eat?

Next to nothing. And for some, that may be exactly the point.”

Yes, gluten is in a lot of salad dressings, marinades, soy sauces, non gluten-free breads, some noodles, non gluten-free beer, non-certified gluten-free oats, most cereals.  But it is most certainly not in “EVERYTHING.”  Eating out isn’t impossible because of cross-contact.  Many of us eat out.  Some fast food places have more than just salad options that are gluten-free.  What’s left to eat?  Next to nothing?  You are so wrong.

Fact #1: The only restriction on a gluten-free diet is no gluten.  This is only as “highly restrictive” as you perceive it to be.

Fact #2: Fruits and vegetables, which are found in abundance in grocery stores and farmers markets are gluten-free.

Fact #3: Fish, meat, and poultry (also in abundance) are gluten-free (as long as your local grocer isn’t padding their ground meat with flour)

Fact #4: Cheese, milk, milk alternatives, and most dairy are gluten-free.

Fact #5: Nuts and seeds are gluten-free

Fact #6: There are more gluten-free grains than gluten-full grains.

Fact #7: Many restaurants (especially chains) have gluten-free menus now and do everything they can to eliminate cross-contact in the kitchen.  Most restaurants that do not have gf menus will work with you in order to proved a gf meal if you take the time to explain your needs.  Also, there are many ethnic foods that are naturally gluten-free.

Fact #8: There are still no labeling standards for foods which may or may not contain gluten because the FDA still has not completed them.  This would make buying packaged foods, personal care products, and medications easier for those of us who have to be gluten-free.

Fact #9: There is more gluten in today’s crops of gluten-full grains than there were hundreds of years ago and our bodies weren’t meant to process as much gluten as we are exposed to today.

While your intent was one thing, it came across as completely different to those of us who live gluten-free for health/medical reasons.  You could have chosen a title that was more about eating disorders than the eating gluten-free.  You could have, you could have, you could have.  Yet, you didn’t.  Now you have the ire of an entire community of people because of how you portrayed a diet that is life saving to us.  Yes, life saving.  I felt I was at death’s door a little over 2 years ago.  Now, I have no need for thyroid medications or supplements.  All my tests are within normal limits with no use of meds or supplements by simply removing one little protein.

So what’s left to eat now?

A whole hell of a lot.  Point taken?

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6 comments

  1. Dang woman, I think I have a crush on you! Well written post! I have read similar articles recently calling gluten-free a fad. I say if that fad leads my grocery store to stock more gluten-free products, bring it!

    There is nothing in wheat, rye or barely that is a fundamental nutrient in our diets. It’s asinine and irresponsible to state otherwise.

    Sure, there is gluten in a heck of a lot of places it doesn’t belong, but if you steer clear of processed foods, which you should be dong anyway, then you’re less likely to find it in places it doesn’t belong.

    Taco Bell “meat” is a perfect example. Wheat IN meat? Next to it on a bun, I can see. I can order without the bun. But when you put it inside your “meat” then you’ve just lost yourself at a minimum 1% of the population and possibly as much as 10% as potential customers.

    • Aw shucks, Theresa. I’ve read many articles and seen a lot of interviews that were just off the mark, but this one really riled me up.

      It’s funny you bring up the Taco Bell “meat.” The list of ingredients of the meat is online and available to everyone yet so many people keep defending it. At home, my taco meat is just meat and seasonings. Nothing that I don’t keep in my pantry or that I can’t pronounce. Taco Bell “meat”…yeah. *shudders*

  2. Outstanding post, Debi! Thank you so much for writing it. You’re speaking for many, many of us who simply cannot eat gluten but have long ago cast aside the notion that the gluten-free diet is restrictive, there’s nothing to eat, etc. If the author’s intent was as stated, this article could have been done so much better and educated folks on celiac as well as eating disorders. (Incidentally, there sometimes is a correlation between the two.) Instead, it was presented in a sensationalist fashion and I seriously doubt that it helped anyone … in either group.

    Shirley

  3. Your response was spot-on! It is incredibly frustrating when medically necessary diet changes are perceived as “choices” or “fads.” Is it really a fad to want to be healthy? Wouldn’t it be great if everyone chose to be healthy! Thank you for speaking up for the many people who eat gluten-free by necessity, rather than focusing on the few who use it as part of a system of covering up their illness. There was a chance in the article to highlight the problems associated with the illness of anorexia, rather than the way it was written. Thank you for speaking up for a whole community!


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