May – Celiac Awareness Month, Effects of Disease & New Tool To Catch It Early
GREENWOOD VILLAGE, Colo. (CBS4) – Painful bloating, frequent diarrhea, severe joint pain, brain fog and depressed mood. These are all symptoms of an autoimmune condition called celiac disease. It damages the small intestine, and is only treated with a gluten-free diet.
If it’s not caught early, celiac can cause a host of other health problems. Doctors say it can cause an increased risk for intestinal cancers, infertility and miscarriages, neurological issues and osteoporosis.
Jenny Levine Finke, of Greenwood Village, has suffered from celiac disease for 10 years.
“I think at first when you’re diagnosed, it comes as a relief like, ‘Oh, I finally understand what’s going on in my body and there’s something I can do about it,’ but then there’s also this mourning period, because your life is about to change. It’s going to be upside down for a while,” Levine Finke said. “There’s a lot to learn. There’s a lot to know, and when you go gluten free you do you start missing foods, you start missing the lifestyle that you once had.”
She now runs a website and wrote a book helping others with the gluten-free lifestyle to manage celiac disease.
“I really do think it takes a few years to get used to the gluten free lifestyle… it takes a few years at least to just start getting comfortable,” Levine Finke said. “I would say that you know, every day I still learn something new. I still go through a lot of emotions every day, even 10 years into this. So, it’s a journey… a never-ending journey.”
Celiac is one of the most mis-diagnosed conditions, often mistaken for other medical problems.
“This huge spectrum of issues that come from undiagnosed or late diagnosis can really be prevented if we diagnose early and then institute the treatments… a gluten-free diet,” said Dr. Travis Wilkes, the medical director for EmpowerDX. “The treatment becomes really, really important.”
Wilkes developed an at-home celiac gene test, just released on the market this month.
It’s a unique do-it-yourself mouth swab test that can tell you whether you have the celiac gene. Wilkes says if you have the gene, it doesn’t mean you have celiac right now, but it means you have the predisposition to possibly contract it down the road.
“You may not have symptoms today, but understanding your risk today may help you a year from now, five years from now, when a symptom presents, you’ll understand what should be on your radar and what shouldn’t,” Wilkes said. “Especially with a condition like celiac disease that can have such a wide variety of symptoms, that it’s so easy to miss, but yet so important, because missing it leads to serve such terrible health complications.”
There are other at-home tests on the market, including finger prick tests that test if you currently have Celiac Disease. The issue with those is you must be eating gluten for the disease to show up on a blood test. If you have been eating gluten-free due to suspected gluten insensitivities, the swab Celiac gene test may be a good way to go, so you don’t have to get back on gluten.
Levine Finke used the test to check her 14-year-old daughter Sydney Finke. Levine Finke says her son took a gene test in a doctor’s office a while back and doesn’t have the gene, so she was curious about her daughter.
“I think what would be really great is to know is does she have the gene because then if she has the gene, she could potentially prevent celiac disease from turning on, by eating potentially a gluten free or low gluten diet in her life, and really paying attention to her gut health and things like that,” Levine Finke said. “So it can be really empowering to her to know she could be on the spectrum, and she can do something about it as she becomes an adult.”
Sydney Finke’s result came back 10 days later, and she does have the gene.
“I wasn’t too surprised,” she said. “I’m not totally worried, because I’ve seen the lifestyle my mom has, I know that I’ll be able to take care of myself… it’s nice to know I have the gene… when I do go out with friends, or with my grandparents, I will eat gluten, so that’s just something I’m going to look out for and not eat as much as I normally would.”
Her mom says this new knowledge truly is power.
“It is very empowering to know that she has the gene, it doesn’t mean she has celiac, it doesn’t mean she has to eat gluten free at this time, but it’s something we can know about and be aware of, if her condition changes at any time in her life,” Levine Finke said. “Obviously, we’d rather her not have the gene, this is definitely a tough lifestyle.”
But she’s confident her daughter will be able to work through the challenges celiac may create.
“She loves to cook, she loves to bake, she’s in here baking and dancing and so she knows how to make a lot of gluten-free food,” Levine Finke said. “She makes the best chocolate chip cookies, and they’re gluten-free, so she’s going to be okay someday.”