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Wednesday, January 6, 2010

5 Misconceptions About Celiac Disease

In case you took off earlier this week on a brief stint as a member of the Amish community I'd like to bring your attention to this tasty little bit of validation from Dr. Mark Hyman, a swoon-worthy MD for any Celiac who's ever gotten the uber-expensive brushoff from a member of the medical community. Anyone who boldly shoots down misconceptions about Celiac Disease gets a gold star in my book. Make it two.
I'm not going to lie, it is very awesome to see my story, our story substantiated in such a mainstream forum. I think we can all celebrate greater awareness and fewer people saying "ohhhh, so you can eat whole wheat flour, right?" I could carry on and detail the myriad of ways this HuffPo article kicks ass but I'd rather move down to the comments section of the aforementioned piece.

Stand back, I'm just going to let it all out - what a horrific, disconcerting, tumultuous, infuriating, slap in the face laundry list of word vomit. Okay, maybe that's not entirely fair; there were some very thoughtful, truthful comments from people sharing their personal stories, expressing gratitude for the article and handing down tips from their own lives. That's the good.

And then there's the bad. And the bad is so very, very bad. Let's break it down: we have three basic types of damaging comments.  
First: your Basic Comment Thread Dingbat, spraying inflammatory remarks in a pathetic attempt to spike the traffic to their various internet endeavors.  
Second: Naysayers who either have an unnatural attachment to (in this case) wheat and feel the need to defend it to the death or who don't want to acknowledge that they might have a problem so instead try to shoot holes in the article.  
Third, and most damaging (in my opinion) are the Haphazard Helpers. These are people, often well meaning, who divulge little tidbits they've picked up along the way from various cobbled together sources but are, in fact, wrong.

The spreading of incorrect tips and information is probably the most dangerous thing to our efforts in spreading Celiac awareness. It harms people with Celiac because they might follow said advise and it harms people who are undiagnosed because it leads to longer periods of undiagnosed and suffering existence. And so, in an effort to squash some pretty heinous untruths, I'd like to offer up some of the misconceptions I've encountered in the last two and a half years. I apologize if these are old hat for some of you, everyone has to start somewhere.

5 Misconceptions About Celiac Disease

1. I don't experience any outward I can't have Celiac Disease

The symptoms of Celiac Disease are so vague and ambiguous and varied among people that it is the number one reason why it goes undiagnosed for so long. Some people with Celiac are thin, some are not, some have problem skin, nausea or fatigue, on and on and on. It's really a grab bag. Maybe the most puzzling symptom of all is displaying NO symptoms. Just because you are not wearing a rut in your floor to the bathroom does not mean that your villi are not under serious attack. Dr. Green backs this up with the 6th question. If there is someone in your family who has Celiac Disease - get tested.

2. I've tried the Gluten Free Diet for a few weeks...but I still have symptoms. This means I don't have Celiac Disease.

When we read articles and medical websites they pretty much all say the same thing - go on the GF diet, if you feel better it means you can start joining Celiac groups. If you don't start feeling better within a few weeks the natural course of thought is - hey - it's not Celiac, bring on the endless breadsticks. To this I say: hold on a second there bronco. Celiac Disease destroys villi and the intestines and that whole squiggly area down there that deals with food digestion, absorption and all those good things our bodies should do naturally. If you are damaged, that is to say - inflamed - this means your whole food processing system is on the defense. You may react to lots of foods and the extent of the damage done by Celiac may have left you open to a whole host of food allergies or sensativities. Dr. Green confirms this in the answer to the final question. I personally did not start feeling better until I got back to basics - eating extraordinarily simple things like rice, plain chicken, the occasional veggie. Once my stomach calmed down and I was able to keep a meal where it belonged I started adding in new things and keeping a food journal. Yes, I know, it's time consuming, it makes you feel weird and abnormal, it sucks. Listen to me! It will help you get your life back on track so you can live it and stop worrying about food. When you react, you'll know what food caused it and you can lay off for a while. Later on, you can experiment and see what happens. Case In Point: I was unable to eat garlic for two and a half years. Last week we bought a shaker of garlic powder and I've been doing fine with it. It takes time, Celiac causes damage - it's not something you can just bounce back from in a few weeks.

3. Celiac Disease goes away.

A fellow Celiac said this to me about two years ago at a college party. She gave me the once over with glazed eyes before she said her doctor had told her if she stuck with the diet the disease would go away and she could go back to her "normal" life. She was also drinking beer. Now, I won't profess to know what kind of aerial somersaults this doctor's words did in the air before entering her ear canal to be mangled by her brain - maybe he did in fact say Celiac would go away, maybe he didn't. But in this and any realm of thought let's just get it out: Celiac Disease Does Not Go Away. However, by sticking with the GF diet your symptoms will go away (yay!). Here is a succinct debunking of this myth. Sounds like a damn skippy cure to me.

4. Everyone should go on a Gluten Free Diet, it's a great way to lose weight.

Pre-'throw out the take out menus' I was consistently 40 pounds overweight. My whole life, basically. I was a big eater - but not a big enough eater to constitute for 40 pounds of baggage. I went GF in July before my Junior year of college and by October I had dropped those extra 40  - they literally just melted away from my body as if they'd never been there. Without an single bead of treadmill induced sweat. (Women around the world, take this as your cue to begin cursing me down to my very toenails). People at school saw this change and wanted to know what my secret was, wanted to know how they could do it the same way, wanted to know where they could buy GF food. Here is a whole higgeldy-piggeldy scientific super-paragraph detailing a study which shows those on a Gluten Free diet are at risk for poor vitamin status - GF foods are not enriched with the things we need (that we often don't get elsewhere because of a lack of nutrient rich foods) and so it's just that much harder to get the juice our bodies need to run. Bottom line: if you do not have an issue with gluten a Gluten Free diet is, at this time, not a healthy way to live.

5. It's okay if I slip up and have gluten every once in a while, I don't feel sick.

And let's bring the wagon train right back around to Dr. Hyman's little HuffPo gem. He outlines very clearly why this is complete manure so I won't wax on about it here. I will just say though - the first time I saw someone talk about "cheating" (on a Facebook Celiac group) I was absolutely shocked. Why would anyone knowingly feed themselves poison? It was then that I realized so fully that not everyone has the same experience with gluten, especially symptom wise. What might be serious pain and a serious disincentive for me might be no big whoop to the guy chugging beers. I also have to realize, darlings, that some people? Some people are just irresponsible and nothing will change that.

And of course, do your own research. Use your internetting skills and go out and find the truths that work for you. Remember, just because it's on the internet doesn't mean it's true. Any schmo can whip up a website, as this blog can attest to.


  1. Great stuff, thanks for posting... I too really appreciated the Huff article, as I do w/ most Huff, but the comments (still glad they do go both ways, as annoying as some were) were unnerving, and so I'm happy you've addressed some of them. The positive comments were promising and optimistic. But, the negative comments force me to take a step back and make sure I know my facts too, which is what you've done, and so thank you!

  2. Great article, Jessica! Recently I heard another misconception that was new to me: "if you were really Celiac (this was said to me), then you wouldn't be 'episodic' (react to gluten if accidentally ingested) - you more likely have a wheat allergy. If you were Celiac, it would be more of a gradual decline over a few years..." Ahem. I think I'll trust the gastroenterologist on this one!

    I look forward to reading more of your posts!

  3. Right on! My favorite celiac experience? When I was starting a new prescription & asked the pharmacist to double check that the pill was gluten free. She look at me and said with all seriousness, "but it's a small pill. a little gluten won't hurt you". I walked out & picked a new pharmacy.
    Love your writing!

  4. Hi Jodie! Sometimes I forget that there are people just starting out on their GF life and a lot of information we take for granted is brand new or unknown to them, it's important to keep it fresh! Glad to hear I'm not alone in my worry over the comments - thanks for coming by!

    Hey GF Chef! Don't you love how people relish telling you about your body? People don't understand that with Celiac...there is no norm!
    Thanks so much for linking to me in your blog, I really appreciate your kind words, you're awesome!

  5. Erica! You snuck in there while I was typing up the previous comment :) Boy, do I love when people try to make me feel stupid about my food issues - you did the right thing, more power to you!
    I've just found out that one of my pills has lactose in it...and it's impossible to get it without lactose. What's the deal with unnecessary fillers? I call for a mass protest.

  6. They are so common misconceptions, but I hate it! I read an article based on the Huffington Post one that was fine, but like on the HP article, so many negative/confused comments. Someone was even saying that they had family in Italy that ate lots of bread and pasta and they were fine so everyone else should be too. I hate the ignorance. Anyways, great article Jessica =D.

  7. That was a great article you are talking about.
    He really made a lot of very important points.

    I know what you mean about the comments. I think
    your list here is very well done. You nailed it!


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