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How Does Delaying Diagnosis Impact People with Celiac Disease? 01/11/2012 - In an effort to understand how delayed celiac disease diagnosis became the norm for most patients over the last few decades, a research team conducted a study to assess the issue. Their study also looked at how delayed diagnosis affects health-related quality of life (HRQoL) for those with celiac disease, and considered differences with respect to sex and age.

Photo: CC--MPClemensFor the study, the team collaborated with the Swedish Society for Coeliacs to send a questionnaire to 1,560 randomly-chosen members, divided equally by age and sex. A total of 1,031 members (66%) responded. The team first measured HRQoL using the EQ-5D descriptive system, then translated the results to quality-adjusted life year (QALY) scores.

The team then compared the results against the results from a survey of the general population. There was some good news and some bad news.

The good news is that, while the average QALY score during the year before treatment was 0.66, it improved after diagnosis and treatment to 0.86, which is  better than that the score of 0.79 for the general population.

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The bad news is that they found the average person with celiac disease faced a delay in diagnosis of 9.7 years from the first symptoms, and 5.8 years from the first doctor visit.

The team concede that the delay has been reduced over time for some age groups, but contend that it still remains unacceptably long for large numbers of people.

Untreated celiac disease results in poor HRQoL, which improves or exceeds that of  the general population if diagnosed and treated. Reducing the delay in diagnosing celiac disease will go a long way toward reducing the burden of celiac disease.

To do so, they say it is necessary to raise awareness of celiac disease as a common health problem, and to intensify diagnosis practices. This may, the note, make mass-screening for celiac disease an desirable option in the future.

Authors: Fredrik Norstrom, Lars Lindholm, Olof Sandstrom, Katrina Nordyke, Anneli Ivarsson

Source: welcomes your comments below (registration is NOT required).

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13 Responses:

Anne Marie
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said this on
13 Jan 2012 4:36:30 PM PST
I find the information about the diagnosis taking over 5 years from the first doctor visit to be quite interesting and unfortunate. Within 3 months of going to the doctor for my symptoms, I was diagnosed with celiac disease. I did have a third cousin who had already been diagnosed, but I was tested for Diabetes and Lactose Intolerance before getting an endoscopy.
As a child, I had many other medical concerns including tonsillitis, and I think any stomach issues had been ignored, from the time I had been able to talk. I may be on the high side for being diagnosed after the first symptoms though. I read a few weeks ago in my baby book, that on my doctor visit at 18 days, I was allergic to something in breast milk. They never found the source, but my mother still eats wheat. I was born in 1984 and not diagnosed until 1997. This delay just shows the importance of spreading the word about celiac disease to help those suffering without a name and give them hope for a healthier future.

Trevor Bower
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said this on
13 Jan 2012 5:53:37 PM PST
I wish there was additional information regarding what are the negative affects on the quality of life with delayed diagnosis.

Kristin Jordan
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said this on
16 Jan 2012 10:36:35 AM PST
Interesting study that asks some good questions. I'd like to see a study like this one that takes the even longer view. What about those of us who took decades to get a diagnosis? Sometimes we are left with major health challenges because of the length of time to diagnosis.
My celiac symptoms were severe in childhood (and went undiagnosed), improved at puberty, then presented me with all sorts of primarily non-GI health challenges (anemia, dizziness, anxiety, general weakness) as a young adult, and then returned with full force after the births of my children. I was finally diagnosed at the age of 40, four years ago. And, even with a completely GF diet (plus many other food sensitivities addressed as well), I still require iron infusions and have multiple GI symptoms.

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said this on
07 May 2013 3:52:39 PM PST
Wow. I'm 40 and just starting a gluten-free diet. Not sure about celiac but most symptoms there. The worst part is knowing all those years of thinking I was lazy and different from everyone and having panic attacks could've been prevented. What would my life have been like? Sad...

jodie brown
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said this on
11 May 2013 10:02:13 PM PST
I can very much relate to Kristin Jordan's comments. I am 50 years old and after having horrible symptoms all my life nearly killing me before I was eleven, and now 50 years of suffering and finally got a diagnosis. I had ALL the symptoms but one... Obvious malnutrition. I look healthy because I am a fitness fanatic and healthy nut. But every doctor I have seen my whole life seems to act as though I was lying about the many symptoms I had. They all told me to exercise more and eat less. I'm in decent shape, but I look like a VERY pregnant 50 year old. I have been gluten-free for 3 months now. My blood work is higher than it was (IgA 519 from 474) when I ate gluten. I feel lousy, look lousy and cannot find any answers regarding this blood work. Does anyone have any info on my numbers? I'm glad to get the diagnosis and for all the websites.

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said this on
16 Jan 2012 1:28:13 PM PST
very interesting.

Greg Marlow
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said this on
18 Jan 2012 2:26:02 AM PST
It took me 11 years to get the celiac diagnosis from the first mental symptoms. I was out of work for most of that time because of the mental symptoms and lost an income of about $800k.

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said this on
26 Jun 2013 3:44:21 AM PST
I am currently experiencing brain fog, poor memory, retention, poor word retrieval which started in my late 40s. I wasn't diagnosed with celiac until 58 years. I have advanced celiac. Had to step back from a highly paid administrative position 5 years ago. My retirement is half of what it was supposed to be if I could have worked for 3 more years. This sucks.

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said this on
20 Jan 2012 6:51:57 PM PST
Lucky for me (but also unfortunately) I was diagnosed at 52, during my first colonoscopy. The doctor sent me right to the lab. I didn't even know what celiac disease was but got on the internet as soon as I got home. Good Lord--there was my entire life detailed. I cannot even begin to describe the misery-from tooth loss to massive Vitamin K deficiencies that I suffered all those years. Needless to say, I am a new person since going GF. Of course I have residual effects like cartilage loss but am grateful I found out.

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said this on
01 Feb 2012 5:48:50 PM PST
I was diagnosed at 42 and continue to suffer the effects of a lifetime of celiac. I think it is important to note that other countries TEST ALL CHILDREN in their population when they are inoculated for childhood diseases. This happens in countries with some measure of socialized medicine because when profit is not tied to illness, management and prevention of chronic illness are incentives.

ann byer
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said this on
11 Jun 2012 1:14:34 PM PST
I too am a late-diagnosed celliac. I was found to have genes for it from both parents.

Elsie C. Fiore
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said this on
17 Aug 2012 5:58:20 AM PST
I am 85 years old and have just begun realizing my digestive system has gone awry. This is also true with my brother and sister who are 84 and 88. I told my doctor months ago about my urinary and bowel problems, however he did not recognize any problems. I am now waiting for an appointment with a GE specialist. You mention Swedes, however, my family is Norwegian. We are basically well. My mother lived to 84 (with anemia?) My father lived to 95 with kidney problems. I hope my new physician pays full attention. I need to live to be 96.

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said this on
16 Oct 2012 9:39:09 AM PST
I hope you live past 100. You've done something right. You're still here!

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I didn't mean my world fell apart because of celiac but because of something else. Finding out about celiac disease actually gave me hope.

@PosterboyOne thing is though I never get heartburn. And this only happens when I've consumed something for consecutive days, like I had the bananas and too many nuts. But if PH has something to do with it then maybe when I'm eating more vegetables and broth that's why I usually feel much better,...

I have seen this a few a gluten free of my previous customers has the disease, but he gawks at my prices and then goes eats from other stores and consumes gluten products.....I tried offering freebies left over items to get him to switch....been watching him degrade ove...

I don't know, it's probably best described as a lot of bile, sometimes yellow, sometimes green (sorry) and a lot of mucus (sorry_) and when I eventually throw it up (if it gets to that point) it's burning in my throat, so I equate it with acid. Also because of the term "antacid" I think of it as...

I'm a scientist to be (currently a student..) And i know how you feel