Going Undiagnosed

The New York Times recently published an article that touches on some things I’ve been thinking about lately. In The Overlooked Diagnosis of Celiac Disease, Carolyn Sayre discusses how long it often takes to get a confirmed diagnosis, and how many people are likely going undiagnosed.

One in every 133 Americans has celiac disease; 10 years ago it was thought to affect one in every 10,000 people in the United States… It takes the average patient 10 years to receive a diagnosis.

What really caught my eye was the idea that the diagnosis is seemingly becoming more and more popular. One in 133 in the US. I know a handful of people who have a gluten intolerance to some degree, a couple who claim full-out celiac disease. In my office of 6 people, 2 of us have it.

But is the disease itself becoming more common, or is it just that more people are actually being diagnosed? According to Dr. Bongiorno in the article, many doctors are unfamiliar with current research and some of the more uncommon ways the disease presents.

That certainly makes sense to me. I was diagnosed by my natural-path after doing a food trial; we removed all wheat and gluten from my diet for a month. After reintroducing wheat, I realized just how bloated and gassy it had been making me. It was like I didn’t know how bad I felt until I no longer felt bad. I didn’t realize I was bloated, I thought that’s just how my stomach looked.

When I told my family doctor, he actually tried to argue with me, saying that if I had celiac disease I would have been so ill it would have been obvious. Well, clearly not, because it wasn’t obvious enough to me to question how I felt.

I’m beginning to think the diagnosis is simply becoming more common because people are more open to the possibility. More people are questioning how they feel, they’re visiting alternative medical professionals, and they’re simply looking for more information.

(Of course, my other theory is that the typical North American diet is causing an increase in those suffering from celiac disease, but that’s another discussion for another day.)


  • Theresa

    I just told my GP that I’ve been gluten free for a year. My symptoms aren’t GI ones but neurological. I get dopey and fall asleep if I eat wheat. It gives me headaches and back pain. I can’t officially be diagnosed because I refuse to do a food trial that will cause damage. My back just hurts too much now if I eat gluten.

    I think people are more open, but I’ve heard it said that wheat today is a very different grain then in the past. Not nearly as close to the land. It was very sad for me to read Recognizing celiac disease : signs, symptoms, associated disorders & complications / Cleo J. Libonati; foreward by David M. Capuzzi and realized that my mom was probably celiac. It brought me to tears to read through 142 pages of symptoms and time and again see more and more things she’d put up with that could so easily have been fixed by a GF diet.

    • Dawn Wentzell

      I wouldn’t be surprised that wheat is very different today than the original grain, with factory farming, genetic modifcation of seeds, processing, etc.

  • Emma

    I am currently in a trial to see if a GF diet will help me. I have had blood tests for celiac disease (which my doc says were negative, but I have read that the only true lab diagnosis is a biopsy of the intestines while still eating the harmful food, so I’m confused on that…) and I have chronic ulcers. At the point of me changing my diet (2 weeks ago) I was so sick I could barely leave my house. Now, two weeks later (with a stress level that is higher than before) I am feeling loads better. I’m not sure I even want to do the trial that my nutritionist recommended at the end of my 30 days… I’m terrified of getting that ill again!

    • Dawn Wentzell

      I’m happy to hear you’re starting to feel better, Emma! And I totally understand your reluctance to try the trial. Good luck!

  • Andressa

    DanaA thought: If somonee’s making a lot of stuff with coconut and nut flours, the fiber’s pretty filling and there they are getting tons of fiber and maybe not so much of the fat they need. That could be an explanation for the poor health right there. I have found studies stating that the more fiber you eat relative to the fat you eat, the less calcium you absorb. Stands to reason that’s true for other minerals too. Plus you just plain need fat and fat-soluble vitamins to absorb and use minerals, so having less of those things in your diet isn’t doing you any favors.The other piece of this is that if you’re overdoing the agave or honey but you’re not eating much in the way of liver or eggs, there goes your protection against the agave and honey. Liver and eggs contain choline that prevents non-alcoholic fatty liver disease. Agave is one of the (if not THE) most concentrated sources of fructose in the modern human diet. It’s worse than HFCS. Fructose in the absence of choline is what builds up fat in the liver.There are other examples, if people think about it, of ways in which some foods can displace the nutrition of other, more important foods. If you’re eating too much displacing food and not enough nourishing food you will wind up in trouble and it doesn’t matter if all your foods are Paleo or even if they are processed.The Anasazi found that out the hard way.

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