How Does Delaying Diagnosis Impact People with Celiac Disease?

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.

I wish there was additional information regarding what are the negative affects on the quality of life with delayed diagnosis.

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 gluten-free diet (plus many other food sensitivities addressed as well), I still require iron infusions and have multiple GI symptoms.

very interesting.

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.

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 gluten-free. Of course I have residual effects like cartilage loss but am grateful I found out.

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.

I too am a late-diagnosed celliac. I was found to have genes for it from both parents.

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.

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.

I hope you live past 100. You've done something right. You're still here!

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 gluten-free diet (plus many other food sensitivities addressed as well), I still require iron infusions and have multiple GI symptoms.

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...

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 gluten-free diet (plus many other food sensitivities addressed as well), I still require iron infusions and have multiple GI symptoms.

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.