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Gluten Intolerance Group Annual Educational Seminar - Malmo, Sweden and Copenhagen, Denmark

The following is from a talk given at the Gluten Intolerance Group Annual Educational Seminar on April 1, 1995 by Dr. Alessio Fasano, Pediatric Gastroenterologist, University of Maryland School of Medicine which was also reported in the May 1995 issue of the GIG Newsletter. The findings of these experts indicate that the incidence of celiac disease in the general population could be as high as 1 in 300-500 people when one takes into account all forms of the disease. Here is a report of the meeting:

The question which was brought up was How prevalent is celiac disease?. Although there is much data on the incidence of celiac disease that has been collected in Europe, there is almost no data from the United States. After compiling data on the incidence of celiac disease in Europe, something very unusual was noticed.

Two cities in Europe - Malmo, Sweden and Copenhagen, Denmark, which lie only 20 miles apart, seem to have a large difference in the incidence of celiac disease. In Malmo, the incidence was 1 in 500 people, which is quite high, while in Copenhagen it was 1 out of 11,000, which is much lower. Keep in mind that these figures represent only those patients whose celiac disease had been clinically diagnosed by a small intestinal biopsy.

There are three major ways in which celiac disease presents itself in patients. The first are the asymptomatic patients who have no symptoms whatsoever, but exhibit damage to their small intestines upon examination. The second are patients with the latent form which means they have blood-tested positive for CD, nut no tissue damage has occurred yet. This form will later develop into the typical or atypical forms. The third is the typical presentation, which shows up when the patient is between 6 and 18 months old. These patients develop the classic symptoms: diarrhea, fatty stools, lack of weight gain, irritability and anorexia. Typical presentations of celiac disease are rather rare in comparison to the other forms, which leads to the overall under-diagnosis of CD, and is illustrated by the following statistics:

Clinical Presentation

Cumulative Prevalence

Classical (Typical) Form

1 in 2500

Atypical - Late Onset Form 1 in 1500
Asymptomatic Form 1 in 1000
Latent Form (CD Associated with other Diseases) 1 in 300-500*

*Researchers in Italy have reached the conclusion that the incidence of celiac disease would be more like 1 person with celiac sprue for every 300 to 500 in the general population, when looking at all forms of the disease.

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Serological screening using anti-gliadin and anti-endomysial antibodies allows doctors to obtain a much more accurate picture of the actual number of people affected by celiac disease. In Europe, for example, researchers have found a much higher incidence of celiac disease than expected (1 in 300!), and it is spread uniformly throughout the population. Researchers re-tested the cities of Malmo and Copenhagen and found the incidence in Copenhagen to be 1 in 300. The difference between the two cities is in the clinical presentation of the disease. In Denmark there were more people who exhibited symptoms of osteoporosis, dermatitis herpetiformis, short stature and other atypical presentations. The awareness of physicians that these presentations could be celiac disease was very low.

The discussion then turned to the United States:

The next question discussed at the meeting was: What is the true incidence of celiac disease in the United States? The researchers believe that the recently discovered antibody markers will help in answering this question. According to them, we should soon be able to tell whether the low estimates for celiac disease in the US are fact, or if atypical presentations of celiac disease have been overlooked, thus resulting in the extraordinary low level of diagnosed celiacs. A study conducted at the University of Maryland looked at 159 children with atypical symptoms (short stature, poor weight gain, chronic diarrhea, abdominal pain, asymptomatic relatives of celiacs).

The following chart summarizes the study:

Study: 159 Children With Atypical Symptoms*

Symptom Group No. Screened Positive Screen Negative Screen
Short stature 78 7 71
Poor weight gain 21 6 15
Chronic diarrhea 17 1 16
Abdominal Pain 8 1 7
Asymptomatic 35 2 33

*Please keep in mind that this study was not based on a random cross-section of the population, but, rather on children who already exhibited atypical symptoms.

It is crucial to make the correct diagnosis, and to keep even asymptomatic people free of gluten . This is due to the associated morbidity, such as chronic ill health. With regard to the pediatric population, permanent stunted growth may result from a misdiagnosis. If the physicians fail to make a timely diagnosis, there is no time for catch-up growth, and the individual may be short forever. The same is true with skeletal disorders such as osteoporosis. Everyone with celiac sprue who experiences osteoporosis must place a certain amount of blame on the physician for not diagnosing celiac disease in time to prevent such demineralization.

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1 Response:

 
Caryl Sawyer
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
05 Nov 2007 8:57:00 AM PDT
Good info. My doctor has refused to even discuss celiac disease with me. What an ass.





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@cyclinglady thanks for checking in Restricted diet didn't do much. Still had some VA last time they checked. Heath still otherwise fine, so RCD remains unlikely. My sxs kick in lockstep with life stress, so that kind of points to some general IBS stuff on top of celiac disease. Very doubtful I'm getting any gluten in, but fingers crossed my system is just a little hyper-vigilant, as I ponder on this thread.

I have always noticed that the table wine in Europe is pretty damn good! I am a wine lover and so is my husband but he does like his Green's beer.

The reason they set the limit at 20ppms is that through scientific study, they have proven that the vast majority of people with Celiac Disease do not have an autoimmune reaction to amounts below that......it is a safe limit for most. Also, just because that limit is set at 20ppms, does not mean that gluten-free products contain that amount of gluten. Testing for lower levels becomes more expensive with each increment down closer to 0-5ppms, which translates into higher priced products. Unless you eat a lot of processed gluten-free food, which can have a cumulative affect for some, most people do well with the 20ppm limit.

I'm in the Houston area so I'm assuming there are plenty of specialists around, though finding one that accepts my insurance might be hard. This might sound dumb, but do I search for a celiac specialist?? I'm so new to this and want to feel confident in what is/isn't wrong with my daughter. I'm with you on trusting the specialist to know the current research.

Hi VB Thats sounds like a good plan. Would it help to know that a frustrating experience in seeking diagnosis isn't unusual With your IGG result I'm sure a part of you is still wondering if they are right to exclude celiac. I know just how you feel as I too had a negative biopsy, but by then a gluten challenge had already established how severely it affected me. So I was convinced I would be found to be celiac and in a funny way disappointed not to get the 'official' stamp of approval. Testing isnt perfect, you've already learned of the incomplete celiac tests offered by some organisations and the biopsy itself can only see so much. If you react positively to the gluten free diet it may mean you're celiac but not yet showing damage in a place they've checked, or it may be that you're non celiac gluten sensitive, which is a label that for a different but perhaps related condition which has only recently been recognised and for which research is still very much underway. We may not be able to say which but the good news is all of your symptoms: were also mine and they all resolved with the gluten free diet. So don't despair, you may still have found your answer, it just may be a bit wordier than celiac! Keep a journal when you're on the diet, it may help you track down your own answers. Best of luck!