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Thursday, January 29, 2009

My Celiac Journey -- Part II -- “You look allergic.”

Just beginning the series? Here’s what you’ve missed.

Part I - The Weight Loss Competition


Thanks for the kudos last week. I hope you’re enjoying my story. This episode picks up where Part I left off: Was I being a hypochondriac or was something actually wrong with me?


I couldn’t stop thinking about how, 2 years earlier, I had done some research and realized that I was showing symptoms of Bi-Polar Disorder. I had taken my fears to a psychiatrist, and he agreed with me. He started me on Lithium, which I hated, hated, hated. But it seemed to help. It was bad enough learning to cope with that. I wasn’t sure that I wanted to find out something else was wrong with me.

I lived in denial for as long as I could, making excuses for myself. Eventually, I could stand it no longer. That night I bit the bullet: I pulled up to my laptop and typed in I started searching by symptoms:

  1. Fatigue - slept about 9-10 hours a night and still needed an afternoon nap. Check.
  2. Achy joints - even on warm days now, and can't write for very long anymore either. Check.
  3. Strange, triangular flush/rash on my cheeks - and it's spreading now, too. Check.
  4. Tenderness in my skin. Check.
  5. Easily bruised. Check.
  6. Blood sugar irregularities. Check.

WebMD came back with a variety of results: Rheumatoid arthritis, Cronic Fatigue Syndrome, Lupus. Wait. Lupus?! I pulled up the symptom checksheet for lupus. It wasn't a perfect fit, but it was really really close. I was terrified, but I just couldn’t bring myself to face another diagnosis like that. I kept talking myself out of going to see a doctor.

Then I got the Headache.

It wouldn't go away. It didn't matter what I took, it got worse and worse and worse. My co-workers and students questioned my health, I shrugged it off. One night I got a glass of wine to try to relax, not knowing that the tannins in red wine can actually cause headaches.

The pain in my head exploded exponentially, and I ended up in the urgent care, thrashing in the worst agony I had ever felt. I missed 2 days of work before it faded back to a steady ache. I had that headache for 2 weeks before I dragged myself to a doctor.

I needed a new doctor, so I searched for an office that had an endocrinologist on staff, just in case I did have Lupus (God forbid). I made the appointment, left a little early from work, and went to see Dr. Shultz.

Dr. Shultz looked like he should be a jolly old grandpa, sitting on a front porch somewhere, drinking lemonade and telling stories. His eyes were twinkly, and he had a very friendly smile, and I knew, just looking at him that he was really, really, really smart.

He took one look at me, cocked his head to the side, and said, "I think this is a visit that I need to sit down for." He sat, crossed his legs, and waited. “What’s wrong with you?” was all he asked, and then he let me talk.

I poured it out to him: everything EXCEPT my trip to WebMD. Would he say lupus? I didn't know. All I knew was that I didn’t want to say that word. I had always wondered in the back of my head what the psychiatrist would have said if I hadn’t gone in biased towards a diagnosis. I didn’t want to influence this doctor, too.

When I stopped, Dr. Shultz just made a grunting noise, as if in agreement with what I had said, then he did a quick examination. He touched the hot patches on my cheeks, looked at my cold, cold hands, felt my neck, checked my reflexes and the joints in my wrists and fingers. And then came the questions:

  1. Did my hands, feet, or face fall asleep? .....yes
  2. Hmm. Did the cold make my hands hurt? .....yes
  3. Hmm. How long had I had that acne? (And here I began to wonder where he was headed) ...since my pregnancy - my son was born 9 years ago
  4. MmHmm. Did I get gassy a lot? Belching? Passing gas? .....I guess so.
  5. More than I used to? ......yeah, but I'm starting to get older. (Here he gave me a fairly dirty look over the top of his glasses. I grinned sheepishly.)
  6. MmHmm. Diarrhea? (Now I was really confused) .....I guess so, sometimes.
  7. What's your favorite food? (I stared at him blankly.)

He sat down again, licked his lips, and smiled. He didn’t seem to care that I hadn’t answered that last one. He just looked at me over the top of his glasses again, and said:

"You look allergic."

Those three words changed my life forever. He took me off of all wheat, corn, and dairy products, as well as all artificial flavors and preservatives. It would clean out my system, he said. You’ll lose some weight this week, he said, and that’s ok. Just be sure to keep eating balanced meals.

In addition, he told me that I have Renaud's phenomenon - that was the cold hands and feet.

Finally, (just in case) he was having me tested for rheumatoid arthritis and lupus, and he ordered a broad blood test which would look for other, similar issues. Then he sent me home and told me to come back in two weeks.

Those were the longest two weeks of my life. All I could hear, over and over was the word "lupus". He had said it. He had really said it.

On the bright side, I won the weight-loss contest for the first time in forever: that first week I dropped 10 pounds.


Ashley said...

Wow! I would be scared out of my mind, too. I'm glad we know it isn't lupus so you don't have us scared waiting for Part III.

Linda said...

I was convinced I had an endocrine problem, maybe even Addison's disease, so I was shocked when the doctor said he thought it was digestive. He didn't have celiac disease in mind, but it set me on the right track. I then pushed for celiac testing and got it in the end.

Michelle said...

Wow. You really had to wait two weeks to hear if you had lupus? Ouch!

And I can only imagine the fun you had with that diet. Little Miss is just dairy free, and I know how hard it is to find foods that don't have dairy hiding in them. Pulling out so many other foods at the same time -- especially the artificial stuff. wow.

And thank you so much for coming to visit my blog on my SITS day. Today has been so much fun and so lovely to see the response and fun comments. I really appreciate it. I hope you enjoyed my blog and come back to visit soon!

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