Share Your Gluten-Free Story: Meet Mandy!

This is a guest post by Mandy.

Most sources say that the average time from onset of symptoms to diagnosis of celiac is six to ten years. Though I have not been biopsied and diagnosed with celiac, I have enough symptoms to merit going off gluten for life. My story and realization took six 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 my only problem. Unfortunately, this stomach bug would not go away. 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 on, my symptoms seemed to multiply. I experienced digestive problems, a constant foggy head, dizziness, muscle aches, multiple sinus infections, and bronchitis for weeks. There were days that I could barely get out of bed. In fact, I spent about three weeks in bed, unable to do anything. My doctor also put me on a beta blocker to slow my heart rate. (That doesn’t seem too healthy for a twenty-five-year-old, now does it?)

Unfortunately, nothing helped. I went off caffeine. I underwent more tests. I accumulated huge medical bills 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. I saw heart doctors, gastroenterologists, even a TMJ specialist. Doctors just gave me another medicine for heartburn, dizziness, and my constant nausea. I heard things like, “Oh, you have anxiety! Why don’t you take something for that?” ”We think you must have IBS” (IBS, I learned, is code for “we don’t know”).

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 to things 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 felt drugged.

My issues came to a head in January 2010 during an episode of vertigo (dizziness). When I went to the clinic, I found out that I also had very low vitamin D levels and a low white blood cell count. (I later learned vitamin deficiencies can be a sign of celiac.) I battled the vertigo for three months and still did not feel well. This led me to find a good family doctor (finally!) who was very helpful and caring. She really seemed to want to help me find some answers. She did some blood tests as well and found that my white blood cells had some abnormalities. She was concerned that I could have an immune disorder or some type of cancer. After seeing a blood specialist at the cancer center in my town, the only answer they had was, “It’s idiopathic.” (Another “I don’t know.”)

Instead of giving up, my doctor decided to order a food panel test for me. I had suspicions at this time from my own research that my problems were food related and I suspected gluten, so I stopped eating it and ate other things instead. I waited five weeks to get the results of my blood test. 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, and much of what I had been eating the past 5 weeks. AUGGGHHH! No wonder I felt so badly!

So, in the summer of 2010, I had to drastically alter my diet to exclude oats, potatoes, egg whites, and tomatoes. Additionally, I still felt affected by the gluten, so it was added to my no-no list. My doctor decided it wasn’t necessary to do further testing, since I was already off gluten, but she advised me to pay close attention and to not eat anything containing my food allergies or gluten, as they would continue to cause me problems if I ate them. (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. Not so good!)

The difference since removing these foods from my diet has been amazing! There were seriously times I thought that I must surely be dying based on how awful I felt daily. Now, to actually have entire days and weeks where I felt like I could function with the rest of humanity– awesome! Although things are going much better, I cannot say that I have been without moments of feeling less than stellar, there is a definitely a learning curve. Just a few months ago I found that a medicine I just started taking used potato as filler/inactive ingredient. After flu-like symptoms hit me, I researched the ingredient list and found the culprit. I now know to never assume with anything. Always check before ingesting.

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 since I changed my diet. My husband and I have definitely eaten much healthier for the past two years. What was hard at the outset is now second-nature to me (and my husband, bless him).

Finally, dealing with food allergies and gluten intolerance (at the least, possibly celiac) couldn’t have come at a better time. This past November, my husband and I had our first baby. I am so thankful that I am feeling better since I have a beautiful baby girl to care for (and my husband!). I hope my story encourages others who feel like there is no answer and no hope to ever feel better.

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

Because of my personal experience, my love of cooking, and my desire to know more about food allergies, I felt like it was a great outlet to start my own blog where my goal is to give you helpful tips, delicious recipes, and frugal advice I have learned while dealing with my own food allergies. Come visit me over at http://www.sensitiveandcentsible.com. I would love to have you stop by and stay a while!

Would you like to share you Gluten-Free Story? Go here for more information!


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Comments

  1. Great account of how you discovered the disease. So many out there have the same experience and yet feel so alone. Ever since I was a child doctors kept saying IBS to me too, when I just knew that they had no idea what was going on. When doctors don’t know what’s wrong, just admit it, don’t give a bogus ‘diagnosis’. You would think that doctors should get at least some training in food related illnesses since it’s so common. Thanks for writing about your experience!

  2. Mandy Griffith says:

    I hope that my story helps someone that reads it. I think food related problems are certainly not considered often enough by doctors–hopefully that is changing. 6-10 years is way too lomg for anyone to feel so awful! Thank you for sharing your comments!

  3. My husband has self-diagnosed himself as having an oat intolerance, but he seems to be fine with wheat. I have stopped consuming gluten to help control my menopausal hot flashes, it seems to really be helping.

    Thank you for sharing your story.

    • Mandy Griffith says:

      It’s amazing how many symptoms are helped by stopping the wheat. I’m glad you are helped by it! I have met more people that end up figuring these things out by themselves. Take care.

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