It’s Story Time Day #10 Mandy’s Story

According to the University of Chicago Celiac Disease Center, the average time from symptoms appearing to diagnosis of celiac is 4 years in the U.S. Though I have not been biopsied for celiac, I have enough symptoms to merit going off gluten for life. My story and realization took 6 years from the onset of symptoms.

It is said that sometimes life-changing events or sickness can trigger celiac or gluten intolerance in a person. I’m not really sure what my trigger was; it could have been stress or a stomach bug, which my first doctor said was all I had. My story started rather dramatically when my brother-in-law took me to the ER with heart attack symptoms. I did, in fact, have irregular EKGs which merited staying in the hospital overnight on heart monitors. After some monitoring and additional tests, doctors decided my heart was fine and called my little issue “stress”.

From that point, my symptoms seemed to multiply. I experienced digestive problems, a constant foggy head, dizziness, muscle aches, and multiple sinus infections. There were days that I could barely get out of bed. In fact, I spent about three weeks in bed, unable to do anything. Additionally, my doctor put me on a beta blocker to slow my heart rate. (That doesn’t seem too healthy for a 25-year-old, does it?)

Unfortunately, nothing was helping. I went off caffeine. I went through more tests. I accumulated tons of medical bills just trying to find out why I felt so awful all the time. Further heart tests, kidney tests, a colonoscopy, an upper GI test, blood work, and samples galore did not help to diagnose my problem. Every test came back normal. Doctors gave me another medicine for heartburn and my constant nausea. “Oh you have anxiety too! Why don’t you take something for that?”
More time passed with no real answers.

One positive during this time was becoming reacquainted with a friend from college who I married in 2006. Yes, he wanted to marry me even with all my issues. He is a good man! I did have some better moments after marriage but never felt great. I already knew, from a previous allergy skin test, that I have multiple seasonal and outdoor allergies like trees, dirt, grass…you know, earth. 
No one ever mentioned the possibility of a gluten intolerance or celiac disease.

I learned to deal with feeling so awful all the time. I felt nauseated, dizzy, and exhausted every single day. Doing simple tasks took a great deal of effort. I remember sitting on the couch every night after dinner and falling asleep. I would describe it as felling drugged.

It all kind of came to a head in January of 2010 when I had vertigo. When I went to the clinic to be checked, I found out that I also had very low vitamin D levels and low white blood cell count. I battled the vertigo for three months and still did not feel well. This time, I found a good family doctor who was very helpful and caring, and she really wanted to help me find some answers. She did some blood work as well and found that my white blood cell count was still abnormal. She was concerned that I could have an immune disorder or some type of cancer since immune-related diseases run in my family. After seeing a blood specialist, the only answer I had was, “It’s idiopathic.” (Another “we don’t know.”)
Instead of giving up, my doctor decided to order a food panel test for me. I waited five more weeks to get the results. I was shocked to find out that I had positive results for allergies to oats, potatoes, egg whites, and tomatoes. These were some of my favorites! AUGGGHHH!

So, in the summer of 2010, I had to drastically alter my diet to exclude oats, potatoes, egg whites, and tomatoes. I still felt like gluten was affecting me too, so I added that to my no-no list. My doctor decided it was unnecessary to do further testing. She advised me to pay close attention and not eat anything containing my food allergies or wheat.

(I distinctly remember the last time I had gluten as a conscious choice…October 28, 2010. My husband took me to a yummy pizza restaurant for my birthday. Oh, was it good! And, I felt like I had the flu for about two weeks afterwards.)

The difference has been amazing! I cannot say that I have not had moments of feeling less than stellar—there is a definite learning curve. For example, a few months ago I found that a medicine I just started taking had potato used as filler. After battling the flu-like symptoms, I researched and found that potato was used as an inactive ingredient.

My best advice is to find a doctor you trust but, ultimately, YOU are responsible for your own health. I am happy to report that I have been much healthier and have eaten much healthier since I changed my diet. What was hard at the outset is now second-nature to me (and my husband, bless him).
Dealing with food allergies and gluten intolerance couldn’t have come at a better time. This past November, my husband and I had our first child. I am so thankful that I am feeling better since I have a baby to care for.I hope my story encourages others who feel like there is no answer and they will never feel better.

I was that person. There is hope. Don’t give up. Keep pushing a little bit more

You can find Mandy blogging over at Sensitive and Centsible

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  1. [...] can read my story over at Gluten Free Birmingham today as part of Jenny’s 30 days of stories for Celiac [...]

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