Celiac Disease – My Journey From Feeling Sick to Feeling Fabulous!

It never occurred to me that I might have celiac disease. Sure, I knew what it was, but I never thought that I would ever have to deal with it.

The Early Signs 

I was 33 years old and had recently given birth to my second daughter. I had occasional stomachaches, best described as “my stomach is eating itself.” But, I was still post-partum, had two young children, and was getting very little sleep. I didn’t really think about it. Heck, I didn’t think about myself much at all, other than the occasional shower and which clothes were clean.

About nine months later, I caught a stomach bug. In an effort to ease the discomfort, I was on a diet of saltine crackers, plain pasta and plain bagels. I only felt worse and worse. I ultimately ended up at an urgent care facility with severe abdominal pain, which they attributed to an ovarian cyst. I went to my OB/GYN and had a pelvic ultrasound, which showed perfectly normal ovaries. Yet, I was still miserable, despite the chicken noodle soup.

Finally, I went to a gastroenterologist. She thought it was just a lingering stomach bug, but ran blood work just in case. The next day I got a phone call. My gluten antibody counts were off the charts. A person without celiac disease has an antibody level of zero; an elevated level, which is a sign of a problem is around 100, and mine was over 500. There was a very high likelihood that gluten was the culprit of my problems! They scheduled an endoscopy for the following week just to confirm, and told me not to alter my diet – yet.


The Last Gluten Hurrah

Knowing what the likely outcome would be, I ate all kinds of gluten that week: pizza, pasta, brownies, beer, sandwiches, bread, soup in a bread bowl, you name it. And I felt SO sick. The endoscopy revealed what the doctor suspected – damage to the villi in the small intestine, consistent with celiac disease. So began my journey into the gluten-free world. I didn’t know anyone else who had to follow this type of diet, and my doctor wasn’t much help. I relied on the web to figure out how to navigate a gluten-free diet in a gluten-full world.


The Road Back to Health

It was tough, trying to figure out what I could eat, and determining all of the foods that I could no longer eat. I didn’t make my family go gluten-free with me, so I taught them about cross-contamination. I had to change my entire approach to meal preparation, so that I could cook for them, while also keeping my own food safe.

I did begin to feel better once I stopped eating gluten, and at the end of the day, I am thankful that my disease is easily treated with a simple change in diet. There are no medications required, and I can live a healthy life by just cutting out gluten. I’ve maintained a positive mindset from day one, and that’s truly been the key to my success. I actually consider myself lucky, because while there are so many people fighting terrible diseases, I can sit back and enjoy a glass of wine and still feel good.

A gluten-free diet certainly has its challenges; eating out and going out are the big ones. But I make it work. I miss beer, I miss good pizza, I miss bread. Sometimes I just think about how it would feel to have a chunk of fresh sourdough bread dipped in olive oil… but then I remember that I’d end up lying on the couch, curled up as if my body was literally eating itself.

Looking back, I now recognize that I had some of the other signs of celiac disease. Foggy brain (which I had attributed to lack of sleep with a newborn), bleeding teeth and gums (attributed to not flossing as often as I should; showering was a challenge, forget about flossing), lowered immune system (I got the flu and was laid up for over a week, but again, blamed the winter and lack of sleep and day care germs). I just never connected the dots. If it hadn’t been for my amazing gastroenterologist who sent me for blood work just to be sure, I might still be suffering.


Better Than Ever

Now I’m thriving. I am making my way through parties, weddings, happy hours and dinners, all while maintaining a gluten-free diet. And with the gluten-free options available these days, it’s easier and more delicious than ever. What I found to be most helpful in my journey was talking to and sharing with other people who are also dealing with celiac disease or gluten sensitivity. When you receive a diagnosis like this, it can be scary and overwhelming. But we are all in this together, and we can help each other. I look forward to continuing to share my experiences with you, and I hope that you will do the same.

Sarah Lewis is a married mom of two daughters living in central Connecticut. She’s been living with her celiac diagnosis for almost 2 years now, and is happy to share her experiences with others. She can be reached at sbojo32@gmail.com or @Sarah_Lewis32 on Twitter.

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