And then this happened
Updated: Dec 2, 2018
About a week after my first IUI procedure, I had my yearly physical with my primary care doctor. She started our appointment as she always does: by asking how I was doing. And I broke down in tears. I told her how frustrated I was and how I felt like I'd tried everything and nothing was working and I just wanted to get pregnant. I just kept taking negative test after negative test. I remember hearing people say that even if you miscarried it was "a good sign" because at least it meant you could get pregnant. Well, I couldn't. I never miscarried because I couldn't get pregnant.
She looked over my chart and asked if I was still getting migraines (yes) and if I was still lactose intolerant (yes). She asked if I'd noticed anything else new or concerning and I said "well, my husband asked me to mention that I'm exhausted all the time, but I don't think that's abnormal, I've always just been tired." I could sleep for 12 hrs and still wake up tired. I also remembered he'd been complaining about the fact that our shower drain was constantly clogged and at my last hair appointment my hair dresser pointed out that it seemed like I was losing more hair than normal.
"Ok," she said "I'm going to run a few other tests." She pointed out that a lot of my symptoms were in line with thyroid issues, but she'd tested that the past two years in a row and both times the tests came back normal. So we did the blood work. I got the results about three days later while I was riding the train home from NYC where I'd been for work.
Turns out I had Celiac Disease. The symptoms are similar to those of thyroid issues, which is why she'd kept testing for that. Some of the symptoms of Celiac include: migraines, extreme fatigue, infertility, iron-deficiency anemia, and lactose intolerance. I had all of them. And hair loss was often seen in people who'd had undiagnosed Celiac for quite some time.
Here's the thing about Celiac that many people don't understand (and that's because information about the disease is simply not communicated properly): it's not an allergy, it's an autoimmune disorder.
Wheat allergies are a thing though. It's exactly what it sounds like: an allergic reaction to wheat. It can be deadly. Symptoms include itching, hives, or anaphylaxis. The reaction is instant, or can happen within a few minutes, similar to other allergic reactions like bee stings and peanuts.
Celiac disease is a genetic, autoimmune disorder that causes the body to launch an autoimmune response when the person consumes gluten (a protein found in grains like wheat). Celiac is not something you're born with, it's something you develop. To develop Celiac, you have to have the genetic predisposition, and then some sort of activation trigger to launch the autoimmune response. Those triggers can include stress, surgery, some viral infections and other traumas. I was in life threatening car accident in college (so about 10 years prior to this diagnosis) and as a result underwent a great deal of trauma, stress, and a few surgeries.
Based on my blood work and symptoms, the gastroenterologist said I'd likely had the disease for about 10 years.
So what exactly does Celiac do to your body? When you develop Celiac, your body launches an attack every time you eat something containing gluten. That attack kills the villi (lining of your small intestine) and over time, you develop malabsorption. Meaning your body can't absorb nutrients. Even if you're taking vitamins and eating the healthiest foods. Your body simply can't absorb all the goods. Hence my anemia, exhaustion, migraines, infertility, etc.
So long story short, it's not an instant reaction. It's something that happens slowly over time and basically just wears your body down until you have enough of these awful symptoms to make a list, call your doctor and say "something must be wrong here." People will ask "how come it took so long to diagnose?" Because that's just the nature of the beast. You have to have it for a while for the symptoms to start to show and then add up. There's no cure, but it's very easily treatable if you eat a strict gluten free diet.
So there I was, researching Celiac for the next four hours on my train ride home from New York. Here was my first question: I'd done IUI a week ago. So what if that procedure and the infertility drugs made me pregnant, but my body couldn't sustain the pregnancy because of the Celiac? And then I had even more questions. I knew I could start treating the Celiac immedietly, but how long would I have to wait to try to get pregnant again? Would it take years to repair the damage to my body? I called my PCP and my OB first thing the next day to ask about question number one. They said that if the IUI worked, I would likely miscarry because I simply didn't have time to reverse any of the damage to my small intestine, so my body just wouldn't be able to get enough of the nutrients it would need to sustain a pregnancy yet. So now what?
My stream of consciousness went something like this: We figured out why I'm likely not able to get pregnant, so that's sort of good news because now I can go gluten free and then try, but how long will that take? At the same time, I may actually be pregnant right now, but if I am I'll probably miscarry. Should I hope for a miscarriage because then I'll at least know that getting pregnant isn't the issue? Would that mean if I finally treated the Celiac I could get pregnant on my own? But who hopes for a miscarriage? I couldn't do that.
Over the next few days, my husband and I went to Whole Foods and bought pretty much every single gluten free item they had. I did research, asked friends and Facebook for recommendations on their favorite GF products. I cried a lot about the foods I'd never eat again. Family recipes and childhood favorites that I could try to make a GF version of, but that I'd never actually taste for real again. I was in mourning for bagels, but at least I had some answers. I had something I could actually do in an effort to change my baby making outcome.
One week later, I took a pregnancy test - it had been two weeks since the IUI and it was time. For the very first time ever, I didn't see the word NEGATIVE.
It said YES +.
YES PLUS! My husband and I kept saying it over and over again. We couldn't believe it. The IUI worked. All those months. All those tests. All those tears. All the drugs. All the prayers. Everything. Finally.
Now, if I could just stay pregnant. If I could just eat all the right things and help my body heal and grow this little baby. The odds weren't in my favor, but I just knew. I remember distinctly that the fear of not being able to stay pregnant was a fleeting one. I just knew this was it - this very first YES + was my little Belle. And it turns out I was right.
She's my little miracle and she's determined and feisty. She has things to do and places to go. She's so busy and she never stops moving. She's tough and strong and she's fearless. She has been all of these things from day 1....from YES +