Wednesday, June 8, 2011

Gluten free diet for non Celiacs

As I discussed in past posts here and here, I have Celiac Disease, which was diagnosed by a blood test that showed extremely high antibodies in my blood and then was confirmed through an endoscopy and biopsy of my small intestine.  I have an autoimmune response to gluten where my own body fights my small intestine when I eat gluten, making the intestine walls slippery and unable to absorb nutrients and digest my food.  The gut becomes permeable and we call it "leaky gut."  If I cheat on my diet, there's several short term repercussions like diarrhea for a week, foggy brain and inability to concentrate, and general tiredness.  These are just my personal symptoms, but everyone is a little different.  The long term consequences of cheating on my diet is that there would be a good chance that I could die young of small intestine cancer, among a slew of other related diseases.  In fact, I had a number of issues in my first years of being diagnosed that I'll blame on malnutrition from Celiac.  Celiac Disease is technically a gluten intolerance.  I am not allergic to gluten because I do not have an anaphylactic response.  In other words, my throat won't swell shut and I don't need to carry an Epi pen like someone with a peanut allergy.

I am also lactose intolerant, as are most adults.  When I drink lactose, I get a stomach ache, but besides the inflammation, I'm not doing permanent damage.  Therefore, I'll eat cow's milk ice cream every now and again and just deal with the temporary discomfort.  I eat cheese and sour cream on a regular basis, but I put soy milk or almond milk in my morning latte.  This sounds much less severe than gluten intolerance, yet it is called lactose intolerance.  When consuming lactose, some people can take a pill with enzymes that will help them digest the lactose.  These don't work for me. 

On the other end of the spectrum are people who are gluten sensitivePeople who are gluten sensitive do not have an autoimmune response to gluten, nor do they have leaky gut syndrome.  They simply feel better when they don't eat gluten.  I appreciate that people thought to themselves, "I get ____ symptoms too often, maybe I should try eliminating things from my diet and see when I feel better."  They try eliminating things from their diet and realize that they feel better not eating gluten (and I'm sure most of them avoid lactose as well).  I think this is great, to take your health into your own hands and see what makes you feel better.

Now, I was diagnosed in 2003 with my Celiac Disease, but I had been sick for over a year and several doctors had passed me by and told me there was nothing wrong with me except that I was stressed out.  My impression is that doctors are very aware in 2011 of Celiac Disease and would happily offer the blood test to people with a collection of health problems or just Irritable Bowel Syndrome (the syndrome for people who they can't diagnose with any real disease, but who suffer nonetheless with no cure).

The increased Celiac awareness has caused a large number of previously undiagnosed people to finally be diagnosed.  An old study claimed that 1 in 133 people have Celiac Disease.  I read in a recent New York Times article that 6% of Americans eat gluten free.  I hate to point this out, but maybe 6% of New Yorkers eat gluten free, I can't picture people in Alabama climbing on this fad diet. 

The increased awareness about gluten have caused a huge number of people to go on gluten free diets.  

Some companies that sell gluten free food have realized that they can make us the processed food we used to enjoy, such as pizza crusts or cake mixes, make it gluten free, and charge us 300% of what we used to pay for these items.  My pizza crust costs $4.00 without anything on it, it's a personal size, and it doesn't even taste good.  My cake mixes are about $6 each.

Recently, some companies have started marketing their products as gluten free and claim that it will help people loose weight!  Really?  Substituting whole grains or wheat flour for potato starches are going to help someone loose weight?  Do you know why I lost weight because of Celiac Disease?  Because I was malnourished and didn't digest my food for over a year.  Yes, cutting out pizza, bread, and beer from your diet and substituting it with whole foods like meats and veggies and fruits is a quick way to loose weight, but substituting it with gluten free products that use starches and rice flour might make you fatter. 

The result of all of this is that there are four types of consumers of gluten free foods:  Celiac Disease sufferers (the gluten intolerant), people who are gluten sensitive, people who are trying the latest fad diet, and our partners who are sometimes forced to suffer through gluten free options.  (Dave eats his own pizza crust, bread, cereal, and beer, but he'll join me for the rest.)

I live in Boulder where people eat health food as candy.  At the farmer's market this past weekend, there were at least ten separate tents that specialized in gluten free food like cakes, granola, or pasta, and several more that had gluten free options.  Of course all of the vegetable farmers are naturally gluten free.  If you go to any grocery store in town, you can find whatever you want gluten free.

What does all of this mean for me when I go out to eat?  I hate to be the obnoxious customer, so I only mention the gluten intolerance in a situation where the menu isn't very descriptive and I don't know what to order.  Sometimes I'll get a great response like, "Oh yeah, we have a separate gluten free menu" or "We can do these five meals as gluten free, which one would you like?"  Other times I'll get an eye-roll without the physical eye-roll.  Other times I'll get someone who has never heard the word gluten before in their lives, pretends they know what's going on, then feeds me gluten.  I recently had a waiter ask me what happens if I eat gluten.  I told him I'd suffer from diarrhea for a month, he winced and promised me a gluten free meal.  My breakfast came out with a huge roll on top.  Some folks hear the word "intolerant" and don't think it's a big deal, so I will cheat and use the word allergy to have them take it seriously. 

Going out to eat is a risk I take to take part in a social life that most people enjoy.  However, I'm sick of not being able to trust that the restaurant I'm going to is actually feeding me gluten free food.  If they were serving people who are gluten sensitive, then I personally feel that a few grams of gluten ending up in their food from using a knife to cut their food that was used on gluten-filled food is okay.  This is not okay for me.  A few grams will trigger a response.  It won't be there, at the dinner table.  I'll wake up at 3 in the morning in a sweat and rush to the bathroom in pain when the food finally gets to my small intestine. 

I don't want to hate on the non-Celiacs who eat gluten free, because gluten free food is now available everywhere, thanks to this demand, and people are just more aware of what gluten is.  However, if my waitress thinks that I'm concerned about gluten because I'm trying a fad diet, then I'm most certainly going to be glutened at every meal outside of my or my close friends' houses. 

What are your thoughts? 


Alisa said...

For the most part, I agree with you here, except on the doctor part. I live in a super small town and even though I blood-tested to have "a decent amount of antibodies", it was passed off as nothing and the closest specialist that could help me is easily 1.5 hours away. So, my docs tell me I could be gluten sensitive, but I absoutely do not have Celiac when in reality, I potentially do. I've actually been told by several doctors that it would be just fine for me to eat gluten.

I'm 11 months gluten free and my fingers no longer tingle all day long, I don't need four naps everyday, I think more clearly, and my digestive system is so much happier! I can always tell when I've eaten gluten and effects last for weeks. It's not fun!

Despite having doctors that don't quite understand test results, my local market is fully supportive of a gluten-free lifestyle though I prefer to stick with mostly whole foods.

I agree that it is frustrating to hear that people are going GF to lose weight. There was a segment on Dr. Oz a couple months ago on that. I'm not exactly sure how they are losing weight being GF because a lot of the products have less nutritional value and are calorically higher but it does increase demand which means there are more products that are available even here in a small town. Our local Piggly Wiggly just added a gluten-free section (though I still prefer the local market) and we even have a pizza place that offers GF pizzas for a ridiculous price. Not too shabby for a town of 10K!

YellowBunnies said...

You fall into a category that I didn't even mention, but I'm so glad you brought it up! I've only met a few celiacs in my life and I've met more people who have gotten tested, but don't have hard diagnoses because of test results that weren't 100% what the doctor was looking for! I'm so lucky that my diagnosis was so easy, or I probably wouldn't have stuck with the diet. If you had antibodies, I'll call you a Celiac! No matter what, I'm so proud of you for figuring out what makes you feel better and sticking with it, because in the end, that's all that matters! I am curious if you find that you have reactions to small amounts of gluten. Also, I'm so glad you have found good substitutes where you live!

Thanks for the heads up on Dr. Oz. I'll look into that. One of my favorite podcasts calls him a non-doctor because he harps pseudoscience.


Alisa said...

I can have a very small amount (as in contamination, not "oops, I ate a corner of a piece of toast") and sometimes be okay. If I have a very small amount two or more days in a row, I'm not okay. I find that when I visit my parents, I am sick from day 2 through a few weeks after I get back home despite religiously avoiding gluten. I have always thought that it was because they have so much gluten-containing foods around so all the contamination adds up over time and makes me miserable.

My mom told me about the Dr. Oz thing and I caught it online, so it may still be up.


YellowBunnies said...

Sounds exactly like me! I get this problem if I eat out too much. Contamination is unavoidable and it just builds up after 2-3 meals out (sometimes only 1!) and I get sick for a long time. Yuck!

I'm kind of curious if someone who is 100% gluten sensitive has the same reaction (since I'm classifying you as more Celiac).

Alisa said...

I wonder the same thing, and if they do, does the reaction last as long? I used to get sick to my stomach EVERY time I ate (no matter what I ate) from ages ~15-28. I always wonder if that was sort of a precursor or a warning sign or just sensitivity at that point (I was a vegetarian for most of that time and ate a lot of soy substitutes which contained a ton of gluten). I no longer get sick every time I eat. That ended about 1.5 months after I stopped eating gluten. I'll have to do more research!