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New Study Takes a Deep Look at US Celiac Disease Rates Over Time


A new study looks at celiac disease rates and gluten-free food consumption. Image: CC--Scott Maxwell

Celiac.com 09/26/2016 - Previous studies have indicated an increase in celiac disease rates in the United States, but these studies have been done on narrow populations, and did not produce results that are nationally representative.

Researchers recently released an new comprehensive report, called, Time Trends in the Prevalence of Celiac Disease and Gluten-Free Diet in the US Population: Results From the National Health and Nutrition Examination Surveys 2009-2014. The research team included Hyun-seok Kim, MD, MPH; Kalpesh G. Patel, MD1; Evan Orosz, DO; Neil Kothari, MD; Michael F. Demyen, MD; Nikolaos Pyrsopoulos, MD, PhD, MBA; and Sushil K. Ahlawat, MD. They are variously affiliated with the Division of Gastroenterology and the Department of Medicine at Rutgers New Jersey Medical School in Newark.

Using data from the National Health and Nutrition Examination Surveys, a team of researchers recently examined current trends in both celiac disease rates, and gluten-free diet adherence.

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Currently, far more people follow a gluten-free diet than have celiac disease. The numbers of people eating gluten-free food far outpace the levels of celiac disease diagnosis. This may be due to perceptions that the diet is healthier than a standard non-gluten-free diet.

This research teams recent surveys examine the current trends in the prevalence of celiac disease and adherence to a gluten-free diet, including people without celiac disease, using nationally representative data from the National Health and Nutrition Examination Surveys (NHANESs) 2009-2014.

The study evaluated 22,278 individuals over the age of 6 who completed surveys and blood tests for celiac disease. The subjects were interviewed directly regarding their prior diagnosis of celiac disease and adherence to a gluten-free diet.

The researchers found that 106 (0.69%) individuals had a celiac disease diagnosis, and 213 (1.08%) followed a gluten-free diet but didn't have celiac disease. These results correlate to an estimated 1.76 million people with celiac disease, and 2.7 million people who follow a gluten-free diet without a diagnosis of celiac disease in the United States.

Overall, the researchers found that the prevalence of celiac disease has remained steady (0.70% in 2009-2010, 0.77% in 2011-2012, and 0.58% in 2013-2014), however, those who follow a gluten-free diet but don't have celiac disease have increased over time (0.52% in 2009-2010, 0.99% in 2011-2012, and 1.69% in 2013-2014). The researchers conclude that the two might be related, as the decrease in gluten consumption could contribute to a plateau in those who are being diagnosed with celiac disease.

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3 Responses:

 
Anita
Rating: ratingfullratingfullratingfullratingemptyratingempty Unrated
said this on
27 Sep 2016 10:09:36 PM PDT
Right... Because it couldn't possibly be that the majority of doctors just don't take it seriously and rarely even attempt to diagnose it until the patient has anemia (At the least..) and/or is otherwise dying.

 
Pippy
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said this on
04 Oct 2016 8:46:01 AM PDT
Indeed. Over the years, ALL the docs I saw said I had too long of a list of symptoms and to pic the top three (tired, anxiety depression) and they still did nothing but check my iron which was very low and needed transfusion. 20 years later I am I got diagnosed 2 YEARS after being in ICU for four days on intubation. I do not trust any doctors any more. They proved themselves to me a long time ago. Now they say I have a rare muscle disease. Thank you for nothing medical community, you failed me and continue to get millions of others; The medical community gets an F- . What good are studies!?! Errrggg!!!

 
Elisabeth Gerritsen
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said this on
03 Oct 2016 11:05:41 PM PDT
Same here: after years of having stomach and bowel pain my doctor suggested I might have celiac disease, but he did not send me for any tests to the hospital. He advised me to go on internet for further information. After months of eating gluten-free all my pains were gone. So six months later I reported to the doctor and he send me for tests to the hospital. And of course they did not find any celiac reactions. To get a positive test I had to eat gluten again for at least 3 months! No thank you, I will not do that. Too much pain. I guess there are many people like me who avoid gluten without being labeled as celiac patient. More study is needed, I guess.




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I've given up on all those processed gluten free foods out there and have stuck to eating a whole foods diet. I have noticed such a huge, massive, difference in my energy, mood, sleep, and well being. Needless to say I've been doing a lot of cooking but have been leaving sugar out because I don't know the safe brands. I tried using Stevia in the raw but keep getting horrible headaches when I use it. I saw that the first ingredient is Dextrose so it's not "raw". Anyway, what are the safe brands out there as far as white and brown sugars go? I made saurkraut and pork chops last night and would've loved potato salad. Also while I'm on here, what about Mayo? What's safe? I saw Sir Kennsington was gluten-free Certified.

My Celiac disease presented as yours did: anemia, unexplained weight loss, aches and pains (due to vitamin and mineral deficiencies from malabsorption), the abdominal burning (whether I ate or not), decreased appetite, itching, the works. Plus I had a mood like a gorgon, which wasn't helped by my friends telling me "how slender!" I looked. My bones were basically all that was holding me up. I've had the blood panel too, which has proven very informative. I had a follow-up celiac panel after I'd been on the diet for over a year and it showed the diet was working. I also went through an anger phase because my (now former) doc (who is also my dad's doc and knows he has celiac AND knows we're related...) just wrote me a prescription for antidepressants, whereas I might have been spared years of feeling crappy (my late 30s!) if he'd just ordered a CBC and found the anemia. I'm a woman and I feel like sometimes whatever you say to a doc (even female docs!), all they hear is "psych symptoms". It really made me mad. But I've always pooped like a champ so I didn't exactly have typical symptoms either. Then I thought about how long it took my poor dad to get diagnosed (decades), which was before there was all this awareness, and I feel grateful for the fact that it took comparatively far less time for me to get my diagnosis and start feeling better. Don't worry about not finding stuff you like to eat: since gluten-free has become "the new thing" there are so many choices and the price has come down considerably since my dad got diagnosed (over 12 years ago). If your doc confirms celiac, then you'll be back on the (albeit gluten-free!) mac and cheese in no time, this time actually absorbing some of the mac and cheesy goodness! Feel better and take care.

If you are worried about your glycemic levels, then you should test with a glucose meter. I have diabetes (insulin resistance/TD2) and rice and potatoes spike me like crazy! I might as well consume ice cream! But if you do not have diabetes, no worries!

Thanks to both of you for your replies. I wasn't so much concerned about the arsenic (although that is an additional consideration) as I was about the glycemic level. I don't bake enough to make blending my own flour blends worthwhile, so I will definitely check out the links you provided, Ennis_TX. So far I'm tolerating oats and my gastro doc says I can keep eating them as long as they're certified GT. I just looked at some crackers I have for hummus and noticed their main ingredient is rice. I should probably just eat the hummus with veggies!

I agree with Ennis. It sounds like she is getting access to gluten way too often to expect healing. I had some pretty severe patches of intestinal damage when I was diagnosed. Anemia was my symptom and I had no gut issues then. So, just because she injests gluten and does not have some major symptoms right away, does not mean she is not building up antibodies. Have those antibodies been re-tested to see if they are in the normal ranges now? Missing patches of damage in the small intestine is possible. Heck, the small intestine is the size of a tennis court (goggle it). So easy to miss. Also, your GI should have taken more than four samples? How many were taken? (Forgive me, if I have forgotten.) Cross contamination in your house is real, especially if you have kids in the house. Member Jebby, a preemie doctor who has celiac disease, was not getting well. Turns out her four small and adorable children were glutening her. She made her house gluten free. Just something to consider. You mentioned she had access to gluten at a party. So, does that mean she caves in and eats it? She needs to become a stakeholder in this diet.