On Being Gluten-Free Without a Doctor's Note

There has been A LOT of news lately about gluten intolerance. A lot. Basically, there have been several articles saying that those without Celiac disease have no need to be gluten free, including those who are gluten intolerant. These articles have ranged from “hey, you may have some placebo/mental effects where you think you’re consuming gluten, therefore, you feel awful” to “you’re an idiot if you’re gluten-free and without Celiac”. Now, I think most of the hostility comes from the fact that certain groups are adamant, almost militantly so, that no one should consume gluten ever. I’m not one of those people so I cannot address that argument. I frankly don’t care who does or doesn’t eat gluten. Have an extra croissant for me if it doesn’t bother you. Your choice.

 

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[I'd say I'm a little less fragile now]

Now,  I'm prettttty severely gluten intolerant - it caused a LOT of health complications for me. I had such severe osteopenia when I was 21 from not being able to absorb anything I ate that I fractured my foot...from barely running. On a DEXA scan, my bones looked like the bones of a 65 year unhealthy woman. There was concern that I could get seriously injured  if I engaged in the weight lifting and strength training necessary to help my bone density because my bones were so frail.  I was on heavy, heavy duty medicine to control daily debilitating migraines that brought me to every neurologist I could think of and made me endure more MRIs in one month than most people have in a lifetime. My knees essentially rotted away -  I had to get gel injections, wear a host of braces, do PT, and all sorts of crazy things just to be active. I still have virtually no cartilage in my left knee.  At one point, I was so ill I couldn't go to work...as a 20 year old. It got to the point where I thought I may just be having some psychosomatic reaction to the insane amount of stress I put myself through as an undergraduate/grad student because the best doctors in the country couldn't figure out what was wrong. I drove several hours, several times to have doctors tell me I couldn't lose weight because I wasn't trying hard enough; that I should do cardio for 4 hours each day and take my diet down to 800 calories. Seriously - a well respected doctor, at one of the best hospitals in the country, told me to do exactly that. I cried and then told him to shove it. I had so many problems, ailments, and illnesses that I was convinced I was just going to never feel better. It was actually my knee problems, foot fracture, and discovery of my very low bone density that pointed my sports med doc to suspect another issue and ultimately, got me off gluten in a very permanent way.

 

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[Oh hey look, gluten-free stuff]

I could never be positively tested for Celiac (although it is suspected since I have/had a host of other autoimmune issues) because I stopped eating gluten. To test positive, you need to eat a decent amount of gluten for a long period of time and I wasn't willing to put myself through that misery. For the record, I DO recommend getting tested before cutting out gluten. For me, the treatment was the same - stay the eff away from gluten - so the actual diagnosis didn't matter much to me.

I get that it’s easier to avoid gluten, particularly when you’re out, if you are able to say you have Celiac disease and have the tests to back that up. My husband is a chef and has worked in several restaurants where other chefs, waitstaff, etc. do not believe gluten problems are real. I've even heard stories of people purposefully serving people gluten just to prove a point. They view those customers who are gluten-free as pains. Sometimes, those customers are NOT very nice to the kitchen and waitstaff and legitimately are pains. But not always. At this point, most people at least recognize the words “gluten-free” and have some inkling of what it means.  The difference in awareness between now and five years ago is like night and day. But that comes with consequences.

Gluten-free awareness is a double-edged sword. On one hand, it has no doubt helped TONS of people, like myself, discover what was making them feel so bad. On the other hand, it's been used and adopted as a weight loss technique and quick fix by tons of people and sensationalized in the media. People using it in that way and not being educated on what it is doesn't exactly help others who need to legitimately eat a gluten-free diet. I can't count the number of times my husband has told me that someone orders something at a restaurant, asks if it's gluten-free, and then chows down on the bread basket. That's their choice, and that's cool by me - I definitely don't think anyone should tell anyone else how to live their life. But the reality is that incidents like that do make it really difficult to be taken seriously if you do need to stay away from gluten.

 

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[More gluten-free stuff]

That's not "blaming" the person who made the choice - that's blaming the media and society for making light of something that could have potentially serious consequences (and that, of course, is NOT limited to gluten-free stuff). That’s blaming the media for somehow making it okay for everyone to get pissed off about what is or is not on my plate. It’s food, people. If I don’t eat something because it makes me sick for 5 weeks, that shouldn’t be a big deal. But it is. (Note: I understand that there IS concern about what people eat in a country that has rapidly rising obesity rates and a slew of costly health conditions that impact public health. This is not an argument about being concerned about the state of nutrition in our country.)

I understand that others can make “being gluten-free” into a massive ordeal. I’m not one of those people. In fact, at most restaurants, I feel SO bad about having to ask if something is gluten-free that I make my husband do it. I so wish I was joking. I’m not a timid or terribly shy person but yet, I feel like I’m such a giant inconvenience to the kitchen and waitstaff that I literally shrink in my chair. I do the same thing at the homes of others - I will never be that person who demands something be made gluten-free. I will be the person that just doesn’t eat there and either eats before or afterwards. All of this tip-toeing and feeling so small  because I don’t want to eat something that makes me feel sick and wrecked my body for years. All of this, frankly, ridiculous behavior because I feel judged by trying to avoid something that my body views as toxic. And I know I’m not the only that feels that way. But at the end of the day -  I don’t need a doctor’s note or medical condition to legitimize what I do or do not put in my body. No one does. If you do, you’re hanging out with the wrong people. Period.