Guest blogger shares what it's like to live with celiac disease

Guest blogger shares what it's like to live with celiac disease

You've probably seen some gluten-free products at the grocery store, but people with celiac disease who are rely on them face more challenges trying to grocery shop and eat without getting sick than most of us could ever imagine. In this guest blog, Dana Mancuso, public information manager for the Urbana Park District and an Urbana mother of two, writes about what it's like to manage this disease in her daily life.

 

Blog PhotoFor most people, soy sauce, while a bit on the salty side, poses no health risks. For me and millions more with celiac disease, it is one of thousands of food products on the market that more often than not contains gluten and if consumed is bad news.  You’d be surprised where gluten hides. It’s in everything from Twizzlers (one of my former favorites) to some tea bags.

Gluten is a protein contained in wheat, barley, rye and derivatives of those grains, such as spelt. It is one of the reasons bread dough is sticky-and you can even buy it as a separate product to add to baked
goods.

For those with celiac, this protein causes an autoimmune reaction in the small intestine, leaving the villi damaged and unable to absorb key nutrients such as vitamin B, calcium and others. Outward symptoms include such indelicate problems as constipation, bloating, and diarrhea. Long term, celiac disease can lead to osteoporosis, infertility issues, an increased risk of intestinal cancers.

The reason for sharing this information with you is that while there are many people with celiac who have unfortunate gastric symptoms, I had no obvious outward symptoms whatsoever. I was diagnosed because I was observant about the results of my routine blood tests and asked my doctor for more information.

My liver enzymes were in the below normal range, and had been for a few years. My physician let me know that could be an indication of malnutrition (or malabsorbtion.) Further investigation led to suspicion of celiac, which was confirmed by two types of testing: special blood tests to look for antibodies, and because those were present, an intestinal biopsy to check for collapsed villi.

One in 100 to 133 Americans are estimated to have celiac disease-97 percent of whom are yet to be diagnosed. May is Celiac Awareness month and I urge you to talk with your physician at your next regular appointment about testing for celiac, especially if you have unexplained gastric issues or have a personal or family history of any autoimmune
disease-as is my case.

According to the Celiac Disease Foundation, Symptoms of celiac disease can include:
 _ Recurring bloating, gas or abdominal pain
 _ Chronic diarrhea or constipation or both
 _ Unexplained weight loss or weight gain
 _ Pale, foul-smelling stool
 _ Unexplained anemia
 _ Bone or joint pain
 _ Behavior changes/depression/irritability
 _ Vitamin K Deficiency
 _ Fatigue, weakness or lack of energy
 _ Delayed growth or onset of puberty
 _ Failure to thrive (in infants)
 _ Missed menstrual periods
 _ Infertility male and female
 _ Spontaneous miscarriages
 _ Canker sores inside the mouth
 _ Tooth discoloration or loss of enamel

There is not a cure for celiac disease, but there is a treatment that  eventually allows the intestine to repair itself: a gluten-free diet for life. This way of eating is challenging for everyone to follow, as so much of the American diet contains wheat.

Everything from bread to cereal to breaded foods like fried chicken all have to be adapted. I can still eat these items, but I need to buy gluten-free versions that use other types of flour such as corn, tapioca, rice, sorghum and quinoa,
and other grains I had never even heard of before my diagnosis let alone eaten. Gluten-free products are often up to twice as expensive as the originals and they sometimes are higher in calories and fat to make up for the lack of gluten.

Food choices are complicated when I eat out. I prepare many items at  home because of the risk of cross-contamination. I can’t eat restaurant chips and salsa because they fry corn tortillas and flour tortillas in
the same oil. I can’t eat a burger from a restaurant that steams or grills buns on the same surface where they cook meat. And there are even some cases where food that is safe at home is not when eating out.

One example is rice. Purchased in bulk, some rice can be packed in wheat flour to keep it from sticking together in the shipping process. There are only a few restaurant kitchens that I trust have enough knowledge to prepare my food in a separate area, using separate pans, new gloves, etc. I am hopeful that more will become interested in serving those of
us with celiac disease. Salad (no croutons!) is healthy and has its  place, but can be a real drag when it’s your only meal choice.

It has been just over a year gluten-free and it is getting easier. I still occasionally long for food to be simple again. And I do admit to wanting a real pizza, real pasta, an occasional donut or cookie dough ice cream without having to make it myself. I do not and will not cheat.  It potentially takes only 20 parts per million of gluten in my food to cause a reaction. I cannot afford to leave to fate whether I am a person who will react to very small or larger amounts of gluten. And based on my nearly symptomless diagnosis, I may never know if I have reinjured my intestine if I do eat gluten.

I was fortunate to have discovered my condition and glad I am able to manage it. I take extra vitamins to be sure I am absorbing enough of them, and to make up for the lower levels of some vitamins in my diet because wheat flour is vitamin enriched.  My family is adapting, too, and my kids and husband now read labels, a positive unintended consequence of this new normal.

Find out more about celiac disease at these websites:
www.celiaccentral.org
www.celiac.nih.gov

 

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urbana1234 wrote on May 08, 2012 at 8:05 pm

Thank you for posting, good info. I am gluten-free by choice (for athletic performance). I thought it would be very difficult to replace my nutritional needs but it is going well so far after about a month or so. I buy in oatmeal, pancake mixes in bulk from Amazon and other bits. I shop at Aldi and they are really good about labelling things which surprised me. The Walmart in Urbana has a small gluten free section as well which is nice.

Jodi Heckel wrote on May 09, 2012 at 9:05 am
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Very interesting and really good information. Thanks for sharing this, Dana!