Tuesday, July 19, 2011

How I Knew

Here's the story
Of a lovely lady
Who was eating tons and tons of gluten treats;
Suddenly she got a rash,
Then felt shitty;
And it would not let up....
[This is the part where I spare you two more verses -- insert brief, bridging instrumental here]
That's the way that I become a Glu-u-tard
The signs and symptoms of gluten allergy/intolerance/sensitivity/Celiac's disease are wide-ranging, and two people with the same underlying issue can have totally different experiences. Some people are asymptomatic, others are hypersensitive, and the symptoms vary quite a bit regardless of sensitivity. Today I am going to tell you about how I discovered my gluten allergy.

I was at an advantage from the outset. As soon as things started to get wonky, my mom reminded me that when the doc diagnosed her with her gluten sensitivity, they mentioned that there was a possibility that her children would also develop a late-life gluten sensitivity. As such, I was able to skip a lot of the usual crap from doctors about it being anything else, as well as skipping a bunch of exclusion diets. I had a starting point, and I think it saved me a lot of wondering what was wrong with me and why. That's right, audience, I was not always like this. There were many years of cupcakes and pasta and bread and breaded cupcakes stuffed with pasta. 

But then I started developing little rashes. The little rashes became bigger as I ignored my body's signal and plowed through gluten like it was going out of style. I suspected that the rash was related to issues digesting gluten, since the rash was similar to what my mom experiences when she eats gluten. No rash was going to stop me. Once I suspected, I went on a mission to eat as many different things as I could. I figured that I'd get them all in right away so that I wouldn't feel like I was missing out on anything that I really wanted to try for the rest of my life. [This was probably a stupid plan in retrospect -- nothing quite like figuring out if you're allergic to bees by sticking your face in a hive for a couple of weeks.] Then the rash got itchy. Did I ever itch. I had eaten all of the things I could think to eat except chocolate croissants. I gave up the grain before I had a chance to try one.

It was really hard to walk away from gluten. My entire diet was built around bread and pasta and cookies. In the midst of being itchy and feeling miserable, I had to re-learn how to eat. I binged on fruits and vegetables and tortilla chips and rice cakes -- the only things that I initially knew were safe. I had strong cravings for my old diet. I was in grad school, so I couldn't afford gluten-free substitutes (and most of them were gross back then anyway); I just lived without most starchy carbs. Carb withdrawal was painful and miserable. My body hated me for suddenly changing everything about its fuel source. I was not psychologically prepared for trips to the grocery store, since now I had to read every label on everything that I purchased. It easily took me 3 times as long to find even the most basic things to eat. 

But the itchy rash went away almost immediately. After a few days/weeks, I felt like a completely different person. I hadn't realized it, but I had been fatigued and headache-y. It felt like a fog was lifted -- suddenly standard operating procedure was revealed to be sub-optimal. I had more energy, I had fewer headaches, I was able to focus and think more clearly. Being a scientist, I decided to re-introduce gluten into my diet to see if it brought back the symptoms. They came back in full force after a trip to a pizzeria, then went away when I went back on my exclusion diet. I don't remember being digestively unwell as my sensitivity developed, but I definitely noticed a crap-ton (ha!) of issues after my first gluten poisoning incident in a restaurant about a month into the g-free life. My body was sending its message loud and clear that it did NOT want me to go back to my old ways, and that is how I became a member of the Glutard Bunch.

Here's me being stubborn and a bad role model. Don't do what I did -- do what your doctor tells you to do. My doc and I started searching for what ailed me with exclusion diets, because there was no fighting with health insurance to get that covered. After knocking it out of the park with the first exclusion diet I tried, I never bothered getting tested. First, testing costs money and I had terrible insurance. Second, blood tests and biopsies don't really appeal to me, since the treatment is the same regardless of if you have Celiac or if you're sensitive/allergic/intolerant. BUT DON'T LISTEN TO ME. I'M NOT THE RIGHT KIND OF DOCTOR TO BE MAKING THOSE DECISIONS FOR ANYONE, NOT EVEN MYSELF. CONSULT A REAL MEDICAL DOCTOR BEFORE MAKING BIG HEALTH DECISIONS. 

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