Day 278: Celiac Disease in Its Manifestations

Friday, June 20

I started the day at work with an Under $20 Pinot noir staff tasting.  We tasted through 3 flights of Pinots from Oregon in that price point.  We do staff tastings every month or so as a group, which is a great way to keep the palate strong, keep the thumb on the pulse of certain wine categories, etc.   But, it was kind of early to evaluate wine at 9:00 a.m., at least for me.  I am already not a morning person.  But, it’s not usual that we’d meet so early to taste through wine flights - it was a reschedule.

Anyway.  After work I joined two co-workers at Mazatlan Mexican restaurant in Tigard to meet a former co-worker.  It was nice to catch up and to hang out with this group. 

I got home and did some strength training, to include 250 crunches, leg lifts,  push ups and other hand weight and ankle weight exercises.  I’ve been feeling like I haven’t been getting intense workouts.  I go in phases.

Anyway.  I haven’t been feeling great.  I have been bloated again.  My legs and arms feel swollen.  My stomach has been grumbly, not terribly achey, but there’s been discomfort.  My energy has been low again.  I’m worried that I haven’t been cautious enough with my gluten-free diet.  It’s a constant issue for me. 

My friend Carolyn met me at the office, randomly, today and we ran over to Golden Leaf Thai for lunch.  We stopped by a couple of lunch options, but had to leave because there weren’t gluten-free options.  I felt like such a pain, and it was one of those classic living gluten-free moments when I  was the ‘difficult’ luncher.  We agreed on Thai, and I ordered a shrimp salad, which was totally safe. 

But, when I went to Mazatlan this evening with my co-workers, I took a gamble.  I ordered shrimp again with onions, mushrooms, garlic and a sauce that was questionable.  It very well could have had gluten.  But my worry wasn’t just about dinner tonight.  I have had a few questionable bites throughout the week.  The dead give-away is my swollen stomach.  It’s so bizarre.  That and my exhaustion.  Like today, at 4:00 p.m. I felt like I had hit a wall.  I wanted to put my head down and take a nap.

When I got home this evening, I flipped through Shauna James Ahern’s book Gluten-Free Girl: How I Found The Food That Loves Me Back…& How You Can Too.  I re-read the part when she was finally diagnosed with Celiac.  And I’m quoting an informative paragraph without permission:

“Celiac disease is still a bit of a mystery.  Why do some people develop it as infants, upon their first feeding of wheat, and others have a sudden, acute onset as adults?  Scientists are not entirely sure.  Those of us who have celiac disease are genetically disposed to it, but we are not born with active celiac disease.  Some scientists are now theorizing that it may be a viral infection of the gastro-intestinal system that causes celiac disease to awaken in the body. … It is clear that a trauma to the body of some sort - injury, miscarriage, or even stress - can trigger the body into full-blown celiac disease.”

It makes me think about my own diagnosis, when I learned about having Celiac and how I cut out gluten and dairy for two months until my gut healed again.  I had lesions on my small intestine from my immune system attacking all the pre-gluten-free contamination.  AFter cutting both gluten and dairy out of my diet, well, that’s the best I had felt in years!

I eventually re-introduced dairy back into my diet and I’m not convinced it’s been a good decision.  I love cheese, ice cream, yogurt - dairy.  But I’m not sure my gut does.

I am pretty sure I have had smaller episodes from my pre-disposition for Celiac as a youth, teen and even during college.  I used to get sore throats a lot, strep, ear aches, bronchitis.  I always felt really sick after drinking one beer or drinks with vodka, gin, etc.  I had heart palpitations in college, mostly from stress and anxiety.  I didn’t know what was going on.

It wasn’t until I moved to Oregon, though, that my symptoms came on full force and I started swelling up.  In fact, the move was so stressful that I felt intense anxiety while I was packing up my things.  While I was excited for my move and new life, I was terrified, anxious, and stressed out of my mind.  I had never been so far from my family.  I went on a business trip to California right after I moved out here and I was so swollen that I didn’t feel right putting on my bikini when I went to the pool.  I have never had an issue with my figure.  I have always been athletic and toned.  I had self esteem about my body image.  But, something was very wrong.  I wasn’t fat, but I was extremely bloated and swollen.  I was totally self conscious of it.  It made me insecure and intensified my depression.

Also, a year later, when my ex-boyfriend and I broke up following the second chapter in our relationship, I was devastated.  My symptoms went absolutely crazy.  I would say that since I moved to Dundee, Oregon back in October 2004 I was dealing with regular bouts of IBS, headaches, anxiety, unexplained bouts of crying, depression - beyond the usual heartbreak.  I felt pretty bad.  And that’s when my congestion really started coming on.  I thought it was allergies, but twice I tested negative for allergic reaction.  My immune system has been out of wack for years now because of an autoimmune disease, beacuse of Celiac.

Every day I learn more about my disease and how it has affected me before and after diagnosis.  I am constantly learning about how Celiac challenged my well being.  And I am not 100% better yet.  I am still trying to manage this diet without getting depressed.  It’s an isolated world, living with Celiac.  I constantly feel awkward when I eat out with friends and often make mistakes with my diet because I get tired of dealing with it.  Which is bad!

Since I started swelling again, I’ve decided I need to try harder with my diet.  I’m tired of not feeling great, and I have no energy.  And I have to accept that missing out on certain foods I love isn’t as bad as feeling my myriad of symptoms that range from uncomfortable to unbearable.  If that’s not reason enough to get more disciplined, I don’t know what is!