May is Celiac Awareness Month because let’s be fair, all things have an awareness month now (which is fine).
I was diagnosed with Celiac in December 2017 after a hell-ish year and a half with a very unhappy stomach. The way I describe it is that it was the stomach virus that never went away. My school had a stomach bug going around and I got a…form of it? Because while everyone was vomiting as a result of this bug, I wasn’t…I just felt like I wanted to all day for almost two weeks (remember that super stomach virus a couple years ago – it was that). And somehow, my stomach was never the same after it.
Once the virus passed (and I stopped feeling like I wanted to throw up for hours on end) my stomach was permanently unsettled. I didn’t feel nauseous, but my stomach was noisy and rumbly. Think about when your stomach makes noises or growls; but imagine having that almost all day everyday for over a year. It’s not pleasant; it doesn’t hurt, but it’s pretty uncomfortable.
When it persisted for a few months, I went to my doctor who tried a few basic things like adding in probiotics and antacids to try and neutralize anything she thought could be causing it. She also had me do trials of eliminating dairy for a few weeks and when that didn’t work, she tried a gluten elimination which also proved to not be helpful. In the end, she sent me to a gastroenterologist (GI) because she had exhausted what she could do in general practice.
I finally saw a GI doctor about a month later who did blood tests and again had me try elimination diets. He also started me on a medication that was used to mostly treat H. Pylori along with killing other bad bacteria that can invade your gut and cause a lot of the symptoms I was having.
The medication worked….like 75% of the way…at least for awhile. Since I felt so much better he tried one more round of it to see if it would clear all of my issues.
And it did clear everything….or so I thought.
After the second round my stomach felt awesome; like it did before this virus invaded and made my life miserable.
But within a few weeks a lot of the rumbling and discomfort was making it’s way back into my life. So, that’s when he said it’s time for an endoscopy so he can actually see what is going on down there. He’d put the possibility of the endoscopy out to me at the beginning of us meeting as well as the word “Celiac” but he respected that I wanted to explore other options first.
If you’ve never had an endoscopy; it’s basically a small camera on a long tube that they insert in your mouth (don’t worry, you’re asleep) that goes through your esophagus and into your stomach and the upper part of your small intestines. While they are looking around, they also do biopsies (aka scrape part of your stomach lining, esophagus, intestines, etc) to see if there is anything there that shouldn’t be.
While it’s not fun, it’s relatively painless. Your throat may be a little sore from the camera, you may have a little burning or discomfort in the biopsy locations and since they pump air into your stomach to inflate it…you have the…fun…of…releasing that air…throughout the day (that was probably the most painful part, in all honesty). But you can go back to work the day after, no restrictions on activity or anything. They just ask that you take it easy the day you have it and have someone drive you home because of the sedation.
My doctor called me about a week later to give me the news I didn’t want to hear: the biopsy tested positive for Celiac and that he wanted to run one more Serology blood test to confirm the diagnosis, which will show whether you have antibodies in your blood that can indicate an immune reaction to blood.
The blood test confirmed the diagnosis. He, until this day, says he hated calling me to tell me that more than anyone else because from day one I was so adamant that it couldn’t be celiac; I loved pasta too much, I never had an issue; it never hurt me. I put up such a hard fight against it mostly because I didn’t want it, but also because I had literally almost no symptoms of it: I wasn’t vomiting or nauseous, the discomfort didn’t happen as soon as gluten entered my system; nothing. I just had rumbling in my tummy.
And as soon as I hung up the phone I started sobbing like a five year old.
I am fully aware that I wasn’t dying, it’s not like it’s cancer or anything terminal. But, I was so angry and sad. Initially I was angry at my doctor for telling me (he did try to be nice and tell me to wait to make any lifestyle changes until after Christmas – which was the next week – to give me one more “good holiday”) and then I was angry at my body for rebelling against me. I was angry that I had something that I can’t fix or cure with a pill and something that could make me sicker as I go throughout life if not maintained.
Of course, me being me, I ate ALL the gluten-filled foods in emotional eating up until January 1st. Because screw you stomach!
Yes, I’m aware it didn’t help in the long run. But, I did it anyway.
My anger maintained when I finally went grocery shopping for gluten-free foods and basically broke down in the middle of Wegmans because I was so mad that I had to do this.
I’m still mad at times, I’m still sad. Dealing with a diagnosis like this is hard because it means you literally have to change so many parts of your life because gluten is in almost everything and my body basically sees gluten as poison.
I’m not as sensitive to gluten as some are: I can actually eat a meal with gluten once (though I know I shouldn’t) and it doesn’t hurt me. There are some people that are so sensitive to it that the second they ingest it, they feel sick. I am lucky that I’m not as severely celiac, but I still have it. And I will always have it.
Throughout this month I’m going to be sharing my story along with a lot of information and resources about Celiac Disease. I understand that this doesn’t affect everyone, but it’s become so prevalent in so many that I want to help bring awareness and understanding.
If you’re someone who was diagnosed later in life like I was, I get you and I get your angry and overwhelmed. It gets better, but it takes time. Keep reading this month for all of the things I’ve learned over this past year and a half.
If you’ve been diagnosed with Celiac or have questions/comments, feel free to leave them down below.