Wednesday, January 20, 2010

The Diagnosis

The blog has been getting some hits… yeah! And the biggest reaction is – “What? I didn’t know you were allergic to gluten!” or “How did you get diagnosed?” I figure it’s easier if I just lay it all out. Bear with me; it has been a long process to diagnosis.

My first signs of an allergy were in Fall of 1999. I just left home where we ate traditional Chinese meals (naturally gluten-free) 95% of my life. I was inadvertently working hard to put on the “Freshman 15”. Let’s be honest, I could use a few of those pounds, having graduated HS weighing in at 92 lbs at 5’3”. The night the allergy struck, I had just eaten pizza, mac ‘n cheese for dinner and a cookie for dessert. I proceeded on to the nearest fraternity party with a bunch of people from my floor and three guys from High School.

The next morning, I was covered in hives, throat swollen, eyes swollen shut, couldn’t hear anything because my ear canals were swollen. I went to the ER on campus. Obviously, I was allergic to something but we couldn’t figure out what. I was put on a regimen of four types of allergy meds and some mild steroids. A week or so later, the hives were gone. The doc thought maybe it was the barley, hops or wheat in the beer. I had told him that wheat products didn’t have this type of affect on me previously (after all, I worked at a Bagel shop in High School), so we ruled out wheat and assumed it was hops or barley. But I had eaten barley soups before with no reaction. Conclusion: Allergy to Hops.

I tried to be brave again my second year in college. Beer pong with Ice house. What a bad idea. Then, to soak up the alcohol, we ordered Papa John’s pizza. Kasey, my roommate, and I had a tradition to share a large PJ’s Pizza and watch American Pie late into the summer nights. I woke up the next morning again covered in hives. I vowed to never drink beer again.

A few years later, an allergist concluded that I was positive for virtually every one of the 100 allergens tested. Prick arm with needle, apply allergen, wait 15 min, see what gets puffy. For me, I had passed out at 7min and was given some anti-histamines. They took blood to conduct the rest of the tests.

Fast forward to 2006… I had pretty common stomach problems that I just kind of dealt with. Finally, after encouragement from my sports trainer, Steve, I went to see an alternative medicine guy, Dr. M. It sounds a little crazy, but Dr. M. performed muscle testing, which is a tool from Applied Kinesiology to identify allergies. Applied Kinesiology is an alternative method of medical diagnosis that uses muscle testing. In the 1960’s, Dr. John Goodheart found that body muscles instantly became weak when the body was exposed to allergens or harmful substances. Based on the foundations of Chinese medicine, the goal is to balance the body’s energy and return it to health. Read up on “muscle testing”. It sounds far out, but is it?

I learned that I have sensitivities to wheat, brown rice, white and brown sugar and milk. I removed these from my diet for several weeks and began to feel better. After awhile, however, I reintroduced some of those foods back in with moderation since I didn’t think there would be serious long-term effects.

With more time on my hands and a move to the health-conscious Chicago, I increased my work outs to 6-7 times a week. You’d be surprised, but at one point I was actually what I call skinny-fat. I weighed less than 120 lbs, but was 28% body fat. This means I carried almost 34lbs of fat on me! In 2008, I met my trainer Randy who pushed me harder than ever and changed my body composition, finally achieving 15% body fat. Over time, I began developing pains in my joints and leg muscles. Soon, the pain became so severe that I couldn’t even walk.

A visit to Dr. D at Active Body and I was diagnosed with a mild form of compartment syndrome so I started therapy which included Graston Technique and Active Release Technique . These are used to break down the scar tissues between my muscles to return to normal muscle function. After months of twice weekly appointments, I was walking with less pain but something was still going on. My aerobic heart rate would spike to 207 (it should be 185).

Enter: Dr. N, sports medicine specialist. My reaction to Dr. N when he gave me Ventolin for my newly identified exercise-induced asthma was, “inhalers are for nerds. Ugh.” My blood tests all proved to be normal, except with slightly high triglycerides. However, my heart rate was still really high.

Enter: Dr. B, a cardiologist who specializes in arrhythmia. I underwent an EKG, Echo Test and Stress Test. No signs of arrhythmia, phew. Too bad I only had a few appointments, this Doc was easy on the eyes!

Enter: Laura, PT. I now need physical therapy to rehab my sprained gluteus medius. This happened because I was overcompensating during exercise to avoid more pain in my legs. I also continued to see Dr. D for Graston/ART and so I had three physical therapy appointments per week and was spending more money than I was making.

Enter: Monique, RD. Dr. N referred me to a sports nutritionist who promptly told me to eliminate wheat from my diet. “Give me 9 months,” Monique says. She was sure I had gluten intolerance. It would take at least 9 months of full gluten-elimination to truly realize the changes. A few expensive consults later, I decided I could eliminate gluten on my own without getting her meal-by-meal weekly planner.

I decided to go 100% gluten free on April 13, 2009. This was the day after I met Ernie’s mom for the first time, who made a fantastic brunch with strata (which includes gluten). It was a great way to say goodbye to bread.

After a decade on this long and arduous road to the final diagnosis, meeting with over ten health care professionals and thousands of dollars later, I finally feel pretty healthy. I still get the occasional stomach pain or other small intestine irritations, but overall, much better. No more inhalers for me, as my wheezing is gone. My feet aren’t swollen at the end of the day because of poor circulation. I can walk with no pain; my joints don’t hurt when I sit. I don’t bruise as easily, and my skin heals faster after minor cuts.

Gluten allergies are very difficult to diagnose. I’ve heard many stories about how long it takes to find out the real cause of someone’s health issues. The fact is that less than 1% of people have Celiac Disease which can be tested for, but many people have gluten intolerances. It’s often the last thing a doctor checks when something is wrong. Most allergists just give you medications to fend off the symptoms, but to treat the symptoms and not cure the cause is the downfall of many healthcare providers.

So, that’s my saga. I'd be surprised if you made it all the way through the story! It's not meant to sound 'woe-is-me' because I'm happy, healthy and ready to experience this new decade!


E said...

Can I schedule an appointment with Dr. B? Seeing as how he is so easy on the eyes and all :) Maybe you can post a picture of him on this blog so we all can enjoy.

Cindy said...

Haha, silly...

Anonymous said...

With all due respect, a simple blood test is all it takes to diagnose celiac.

100% gluten free doesn't include removing the shawarma from the bread (see Jordan trip post).

But I hope you're feeling better, and will keep on doing so.