ASHLAND — In 13 years, Jennifer Johnson has cheated on her diet only two times — both of which she regretted.
While many people look forward to a “cheat day” here and there, Johnson said it’s just not worth it in her case. The 27-year-old Ashland woman has celiac disease, a disease in which the small intestine is hypersensitive to gluten (a protein found in wheat, barley and rye), leading to difficulty in digesting food.
“It’s one of those things where I always had it,” she said. “It wasn’t always super severe, I just kind of got used to the pain.
“Growing up there was never a day where I didn’t feel pain, and I just thought it was completely normal. I remember at one point I asked my sister, ‘Are you chronically in pain,’ and she looked at me and said, ‘No, that’s not normal.’”
Without anyone able to give her answers, Johnson tried her best to cope with the pain.
“The doctors just kind of pushed it aside saying, you know, it’s probably just growing pains and stuff,” she said.
Finally, when Johnson was 14, her mother (who later learned that she, too, has celiac disease) spoke with another woman with celiac disease and realized her symptoms sounded similar to that of her daughter’s. It was after that conversation that Johnson began weaning off gluten.
“They day after I tried going gluten-free, my mom asked me how my pain levels were and it was the first time I didn’t have to lie to her,” she said.
According to the Celiac Disease Foundation, there are more than 200 known celiac disease symptoms, which may occur in the digestive system or other parts of the body. Johnson said she had failure to thrive and would experience bone and joint cramps, among other signs and symptoms.
Her New Year’s resolution for 2007 was to go completely gluten-free, meaning she started to steer clear of products with wheat, barley, rye and oats.
“Oats are sometimes okay, it just depends on the field that they’re grown in because they tend to swap wheat and oat fields every other year to keep the soil fresh,” she said.
Naturally gluten-free food groups include fruits, vegetables, meat and poultry, fish and seafood, dairy, beans, legumes and nuts. There are also grains and other starchy foods that are naturally gluten-free, such as rice, potatoes, quinoa and millet. Click here to see more gluten-free foods and substitutes.
Adopting a gluten-free diet seemed simple in the beginning; however, “Being 14 and saying you’re on a diet raises a lot of concerns with different people, and there were some people who thought I was trying to cover up an eating disorder or me having OCD, which wasn’t the case,” she said.
Trips to the grocery store proved challenging at first, especially since gluten is in many different products, and because she also has dyslexia.
“I didn’t know if I would ever get it, but thankfully, with lots of trial and error, I’ve got it pretty down pat,” she said.
The increased availability of gluten-free products over time has also helped; although, Johnson said even though some products are advertised as “gluten-free,” it’s important to read the label.
“I know a lot of times things will say that they’re gluten-free and then I’ll look on the ingredient list and it’s like, ‘Oh, I still can’t have it,’” she said.
Johnson said her go-to foods are rice and basically any fruit and veggie. She said misses regular bread, but the gluten-free alternatives have gotten better over time.
“Unfortunately, now there’s no cheat day with celiac disease,” she said. “Every day I have to think about food."
And it’s not just food that she has to be cautious about — she also makes sure to check the ingredient lists for her hygiene and beauty products. She said there are certain chemicals derived from wheat that can be found in products like shampoos and soaps.
“I would use shampoo and it felt like my scalp was burning,” she said. “I just thought it was because I was using cheap products, but come to find out it was actually because there was wheat in that product.”
One of the most challenging parts of the disease, she said, is feeling alone, as though no can understand or relate. Fortunately, Johnson said she was able to connect with others who have celiac disease via the Richland County Celiac Support Group.
“Finding other people in the area that had it was a big help,” she said.
According to the Celiac Disease Foundation, celiac disease is estimated to affect 1 in 100 people worldwide.
Johnson said growing up she never realized what a huge social role that food plays.
“Some people will want to go out to dinner or grab coffee and at first I would just turn down those offers because I had a lot of shame attached to it because I felt bad I couldn’t participate, but now I’ll just come and I’ll just bring my own food and it’s fine,” she said.
To anyone else with celiac disease, Johnson advises to do your research, give yourself grace on the days when you make a mistake, and to find a friend or support group.
“Having celiac is very isolating, so I can stay physically healthy with food, but just to stay mentally healthy, just having a good set of friends and a good support group has been invaluable,” she said.