[jccgf]

People with coeliac disease are waiting an average of 13 years to be diagnosed, a poll has revealed.

Read more:
http://news.bbc.co.uk/2/hi/health/6623237.stm


Nothing we don't already know, but publicity is always good .

Cara

[jamietwo]

I was just coming here to post this, Cara! It sounds like they diagnose based on a "simple blood test" in the UK - there was no mention of biopsy. I wonder what blood test they use...

[rachelb]

You know, it's so interesting to me. I've been on this path for 3+ years now and the information available and the publicity about celic/gs has just exploded in that time. I know that I notice it more now than I would have before, but still it just keeps getting more and more mention. Yay! I think there are still a lot of undx'd people out there, but I like to think there are fewer and fewer of them all the time because the word *is* getting out.

Rachel

[annelb]

What is even worse than waiting 13 years to be diagnosed is never getting diagnosed. Over 90% of celiacs are undiagnosed. How many will ever find out that their health problems are related to diet? And that is only CD. What about all of us with gluten sensitivity?
Anne

[aklap]

I thought the number was 11...wasn't that the number that was thrown out at the Intl. Celiac Conference in NY?

Those of us with GS are probably in the same boat the CD'ers were in 5-10 years ago. We are left to fend for ourselves [practically]. Thank Heaven's for Dr. Lewey, Dr. H, Dr Ford, Dr Fine...those that can think outside the box a bit.

[jccgf]

Recognizing celiac disease on the basis of the various manifestations of the disorder is difficult. In a study20 of 228 patients with adult-onset celiac disease, it was found that 42 were diagnosed at age 60 or later. Seven patients with dermatitis herpetiformis were excluded, leaving 35 patients in the analysis. Fifteen of the 35 patients had been seen--with unexplained symptoms and abnormal blood tests--for an average of 28 years by their family physicians or in hospital outpatient departments before the diagnosis of celiac disease was made.

From: Detecting Celiac Disease in Your Patients by Harold T. Pruessner, MD
PMID: 9518950 Mar 1998


Over a 7 1/2-year period, 39 patients were diagnosed, 49% within the last 18 months of the study period. Fourteen patients (39%) had been referred to the hospital a total of 30 times with features suggestive of celiac sprue, yet without being successfully diagnosed: the delay between initial referral and diagnosis was 6 years in nine of these patients
How many hospital visits does it take before celiac sprue is diagnosed? PMID: 8835894

[darlindeb25]

I was never officially diagnosed, yet I was to doctors for over 25 yrs with symptoms and never an answer, just the one I was beginning to believe, "It's all in your head, you need something to calm you!"

My sister was officially diagnosed 7 yrs ago last March and I followed her in gf in July. Our dad went gf 3 yrs ago this coming Nov--he is 72. Sad that we have to be so sick for so long.

My son Joe has gained 100# in the last 5 months, his thyroid has nearly stopped working, he has fits of anger, heart palpitations, GERD and asked his doctor to test him for celiac and type 2 diabetes. His doctor simply said, "It's not necessary at this time!" His doctor will not like meeting his mom on Friday. I will be in Michigan for a wedding and Joe wants me to see his doctor with him. I am a little unhappy with doc's right now, he may not want to meet me!