MONTVILLE, NJ – The Montville Township Committee proclaimed May as “Celiac Disease Awareness Month” at its April 10 meeting, a move spearheaded by township mom Grace Sumka, whose daughter Elly was recently diagnosed with celiac disease.

Celiac disease is an autoimmune disorder triggered by eating a protein called gluten, which is found in wheat, barley and rye, according to the website beyondceliac.org. When a person with celiac eats gluten, it causes damage to the small intestine. When the small intestine is damaged, nutrients can’t be absorbed into the bloodstream, leading to malnourishment and many other health problems.

“My daughter can no longer have her favorite foods or go to her favorite restaurants,” Grace told TAPinto Montville. “She has to bring food to all parties, sleepovers and play dates. She feels isolated. She frequently says, ‘I just want to be normal.’ Elly is always worried about cross contamination – she has to make sure no one has touched anything with gluten before touching her stuff, and she has to be worried that a spoon that has touched gluten-containing items has also touched her food.”

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Grace said that when someone asks Elly what is it like having celiac disease she tells them, “it isn’t fair that I have celiac disease because my favorite foods like cupcakes, pasta, pizza, doughnuts, brownies, cookies, cakes – well, you get the idea – are not gluten free. I can’t eat them anymore or go to my favorite restaurants. You may not think it’s a big deal, but it is to me.”

Beyondceliac.org lists the following facts about celiac disease:

  • Even just a crumb of gluten is enough to start the autoimmune response in people with celiac disease.
  • An estimated 1 in 133 Americans, or about 1% of the population, has celiac disease.
  • It is estimated that 83% of Americans who have celiac disease are undiagnosed or misdiagnosed with other conditions. 6-10 years is the average time a person waits to be correctly diagnosed.
  • Gluten can be in non-food items such as play clay, sunscreen, toothpaste, medicine and lipstick.
  • There are no pharmaceutical treatments or cures for celiac disease – a 100% gluten-free diet is the only existing treatment for celiac disease today.
  • Long-term complications of celiac disease include: malnutrition, lymphoma, accelerated osteoporosis, nervous system problems, problems related to reproduction, intestinal cancer, and liver diseases.

At the meeting, Mayor Richard Conklin thanked Grace for bringing celiac to residents’ attention. She said that celiac has changed their lives in many ways. They had to buy a new toaster and cooking pots, and the social aspect can also lead to isolation.

“It’s not a well known disease, and people are saying it’s a ‘fad,’” Grace said. “They say, ‘well no big deal – you can’t eat gluten.’ But it’s in everything! And the problems range from being sick now to long-term illnesses. It’s a very serious disease.”

Lime green ribbons were installed on township lamp posts and light poles around the municipal building on April 25 to commemorate the awareness proclamation.  In addition, the following message will appear on the electronic board outside the municipal building, according to Assistant Township Administrator June Hercek: May is Celiac Awareness Month.

Grace said that she and Elly will be wearing lime green throughout May to raise awareness, and will be participating in fundraisers. At the township committee meeting, Grace and Elly posed for a photo with Conklin following the proclamation’s reading. Elly was wearing a t-shirt that said, “Help Celiac. Win The Battle.”

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