It all began with my dad. It was June of 2009 and dad’s health had been going downhill for quite some time. He didn’t have energy, was looking pale and, as a good stubborn German man, refused to go to the doctor and had been refusing for months. I will never forget the Sunday that we had done a trip through the orchards and when mom and dad dropped me off, as usual, I invited them up to my condo which is on the second story. Dad flat out said “no” because he didn’t have the energy. I had gone over there a few days later and dad could hardly walk across the living room without stopping to gather his energy so he could keep going. He had turned into an old, old man in front of our eyes. My brother emailed me, asking if he needed to fly in from Washington state. I told him no…but I honestly didn’t think dad was going to make it. Later, he would tell us that he wasn’t sure he was going to live much longer.
A couple of weeks later I received a phone call while I was at work. It was my mom and my dad had driven himself to the ER from his part time job at a golf course. They had found a hernia and would have to do surgery. When they did the pre surgery blood tests, he came back severely anemic and ordered an upper and lower GI to find out where they internal bleeding was. Otherwise, why would you have such severe anemia? The gastroenterologist did the tests and told mom that they biopsied a portion of his upper GI but he was pretty sure it was Celiac Disease.
My mom is super resourceful so started doing research so when the test came back positive for Celiac Disease, she was ready to rock n roll. Everything got put into a box and I was the proud recipient of TONS of food. Mom started baking and cooking gluten free, dad was mad at the world. Here he was, in his 60’s. He was already a diabetic and had a thyroid condition…why this too? No bread, no pasta, no beer…Father’s Day was right around the corner so I did my due diligence as his daughter and found gluten free beer. It was no Bud Light but it worked!
We would later find out that all of these autoimmune diseases work hand in hand and when you have one, you are very likely to have another.
Mom’s research took her to find that if you have a relative with Celiac Disease, you have a 1 in 22 chance of having the disease too. A few months later I took a blood test and it came back positive for Celiac Disease. I spoke with my doctor and she told me that as long as I didn’t have the symptoms, to keep on living my life the way I was. (BTW, this is NOT correct. If you are diagnosed with Celiac Disease you must IMMEDIATELY start eating gluten free).
As time went on, I starting having symptoms. I had always been anemic but now I was having intestinal issues. I would eat and then head straight to the bathroom because it went through me so fast. I would have severe cramps and would go home and just curl up on my couch, praying they would go away. I was bloated and had no energy.
I finally decided it was time to go gluten free. Should be easy, right? My mom and dad had just gone through it and I was sure it would be easier for me.
I went through the purging process as well, taking food out of my pantry and donating it or giving to it friends. I then headed to the grocery store, Vitamin Cottage, actually. I will NEVER forget standing in the pasta aisle, looking at the mac and cheese and wondering which box of $5 mac and cheese was actually any good. Which $6 pasta was any good. I was overwhelmed and, before I could start crying, I bought a box of mac and cheese and went home. It was overwhelming and I cried all the way home. The mac and cheese sucked. It was expensive so I ate it all and cried more.
The next day I put on my big girl panties and went to City Market. I bought a few things because a girl’s gotta eat. I asked mom for help. I tried things and figured out which ones weren’t good, although I’d eat it anyway because GF food is EXPENSIVE. Most breads were only good for toast, buns were hard, eating out was horrible and still can be bad. It was FRUSTRATING.
But I’ve lived and I’ve figured out what is good, what isn’t, where is safe to eat, where make my tummy hurt and in this, I’ve found friends who are going through the same thing. It’s so much easier when you have people who know exactly what you are going through.
And that’s my journey, so far. I know there is more to do, this is my platform and there are many more people who feel alone in this world, or who haven’t been diagnosed with Celiac although they’ve been diagnosed with everything under the sun. And the true cause is Celiac Disease.
I ask that if you know someone who has Celiac Disease and feels alone in the world, share this blog. If you have a question for me, ask. I’m here to help, I’m going on this journey for a reason.