Everyday Eating with Celiac Disease

Living with Celiac Disease

My story of being diagnosed with Celiac Disease December 28, 2009

Filed under: Everyday Living with Celiac Disease — Michelle @ 3:13 am
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I learned from those who have celiac disease that they’ve had it for a long time without knowing it.  I wonder how long I’ve had it, but it was my twin sister’s diagnosis that lead me to my own.

For years, I’ve consumed an excessive amount of ice on a daily basis (about a gallon worth of water each day), annoying my husband.  This condition, known as pica, is not unusual for those with anemia.  I was diagnosed with iron-deficiency anemia at age 17, along with malnutrition and hypothyroidism.  The treatment- change my diet and take daily iron supplements, along with medication to treat the thyroid disease.    I’ve done what my doctor prescribed.  However, for years, I continued to have the anemia, no matter how much supplements I took and how much iron I consumed in my diet.  I am not a big meat eater, so I often turned to iron-rich veggies and peanut butter as my sources.  As I changed doctors through the years (due to college and changing residencies), I was asked to increase my dosage of iron– rather unpleasant to the stomach.  Not seeing any change in status, I gave up on the supplements and resigned to the fact that I’ll be forever anemic (not recommended).

My twin sister, Marilyn, also had similar experiences.  She, too, enjoy consuming ice and was also diagnosed with anemia.  In the last couple of years, she developed a dysphagia- a problem with swallowing.  After seeing a couple of doctors, she was diagnosed with Plummer-Vinson Syndrome, esophageal webbing that inhibits swallowing, often associated with anemia.  I, too, began having diffuculties swallowing foods, especially breads (not sure if this have any relevance to celiac disease or just merely a coincidence).   Since Marilyn had it, I figured I get myself checked out.  I went to my doctor and asked to have a Barium swallow procedure done, since this is what lead to her diagnosis.  Surprisingly, it turned out negative.  Knowing I was not making this up and feeling there is definitely something wrong with my throat (about a week later, I had a piece of chicken stuck in the “webbing”, rather painful and frustrating experience), I began researching this condition, Plummer-Vinson Syndrome.   In my research, I learned there seemed to be an association with celiac disease.  It was about a year ago where I wondered if this is something I had.  I had stomach pains and spasms, along with my swallowing issues.  Because celiac disease is a lifetime condition, I discounted it thinking that if I had it, I would have already known, especially by my 30’s. 

Marilyn’s health began to deteriorate.  Her swallowing issue worsened and so she met with her gastroenterologist who suggested a throat dialation and a biopsy of the small intestine to test for celiac disease.  When she called me about this prior to her procedure, my instant thought was- yep, I bet it’s celiac disease.   Her procedure resulted in a positive diagnosis of celiac disease (a text book picture apparently).   She had blood tests that also yielded some of the untreated results of celiac disease.  Her body ailments all resulting from malabsorption- chronic fatigue, heart arrythmia, osteoporosis.  When she told her doctor that she has a twin sister with similar signs and symptoms– palor, thinness (my BMI is at 18.5, although my twin is thinner) trouble swallowing and, at this point, tongue pain– his response- she must be tested right away.

So, I scheduled my appointment with my doctor that Monday and within 3 weeks, I, too, got my diagnosis.  Now that I know what the problem is and how to treat it, in time, my symptoms will subside.  What a relief!!!

Here lies a challenge– starting a gluten-free diet.  I enjoy cooking and baking and a good challenge!   Gluten is in so many foods we eat- breads, pasta, cereals (including oatmeal, which has been my breakfast everyday for a couple of years!!), baked goods- cookies, cakes, and pies, and Chinese Food!  It’s a good thing I always like my rice and potatoes!!   One of the challenges is knowing what to look for in a food label.  Many prepared foods have gluten and you really need to know what to look for as something that contains gluten, such as malt flavoring, emulsifiers, starches, etc. 

I have always been conscientious of my health and as such, I eat a relatively healthy diet.  I do not typically buy pre-packaged food (unless it was pasta) and instead I make most everything homeade or “from scratch”.  I’ve discovered in my web searches that there are several websites that provide guidance to eating a gluten-free diets.  Of course, there are recipes, products, and a list of places to go to for gluten-free goods.  In this blog, I’m going to share these experiences with you, critique some of the products and also provide some ideas of everyday meals that I make at home.

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