“I know what’s wrong with you. You have a disease called noassatol.” That’s what my husband said to me when I was down to 114 pounds (at 5′ 5 1/2″) and had a very flat bottom. I was 35, uncontrollably losing weight, and very weak. It was scary.
It turned out to be celiac disease, and a gluten-free diet cured me. You can read my complete celiac diagnosis story here, but before celiac awareness month is over, I want to share a few thoughts with you.
First there was celiac disease
The gluten-free world has really changed. It used to be that people adopted a gluten-free diet for one reason – celiac disease. At first it was considered a childhood disease, but now we know it can be diagnosed at any age. Here in the US we learned in 2003 that many more people have celiac disease than what we realized thanks to a prevalence study.
More people are getting diagnosed, but unfortunately some doctors still don’t take women’s symptoms seriously enough. Here’s what a study from Switzerland found:
“A survey of nearly 1,700 people with celiac disease conducted by Luc Biedermann, MD, of University Hospital Zurich, and colleagues indicated that the time between the first reporting of symptoms to a physician and receiving a diagnosis of celiac disease averaged about 31 months for men versus 50 months for women (P<0.001).” Source – MedPage Today
And while I’m on the topic of celiac disease, I have to bring up a pet peeve of mine.
It’s called celiac disease NOT celiac’s.
Celiac is not a name. It comes from the Latin word coeliacus meaning “of the bowels.” So celiac disease is a disease of the bowels. Sometimes, particularly in Europe, it is spelled “coeliac” which comes from the Latin spelling of the word. We say “heart disease” or “lung cancer” not “heart’s disease” or “lung’s cancer.” In the same way, celiac disease is like saying bowel disease.
Then there was gluten sensitivity
As more people were getting diagnosed with celiac disease, a new group emerged–those people who do not have celiac disease but are intolerant or sensitive to gluten. Their symptoms are often just as severe and varied as those with celiac disease, but lack the intestinal damage. Some people believe it may cause damage to other organs, but regardless, the symptoms themselves are enough reason to stop eating gluten.
It’s important to be aware of both
We need to make people aware of the effects of gluten that can be caused by both celiac disease and gluten sensitivity. It’s important for people to be tested for celiac disease, which requires a strict gluten-free diet for life, and knowing they have the disease can help some people to comply, especially if they don’t have obvious symptoms.
But it’s also important for people to understand that just because a doctor tells them that they don’t have celiac disease doesn’t mean that gluten has no affect on them. First, it’s possible that the celiac test was wrong. Tests can be performed and read improperly. But even if a person truly does not have celiac disease, they need to know that gluten may still be the cause of their problems, otherwise they might continue eating gluten and suffering from symptoms that are due to gluten sensitivity.
So while I want people to be aware of celiac disease, I also want them to be aware of gluten and the effects it can have. Gluten Dude has a terrific infographic showing the many symptoms and different parts of the body that can be affected by gluten (make sure you scroll down the page to view the whole graphic).
If you know someone who might have celiac disease or gluten sensitivity, talk to them, give them information, and encourage them to see a doctor. Lots of people still don’t know that the food they are eating could be causing the myriad of symptoms they are experiencing.