Post by kickingfrog on Feb 4, 2011 14:37:18 GMT
Talk by Dr Yannakou
on Tuesday, 2nd March 2004
(in Durham, UK)
(From Vee )
Dr Yannakou came to give a talk on the hereditary aspect of coeliac disease then answered a range of question related to CD. I hope the following notes give an accurate account.
Genetic link
(Very) briefly, he explained that there is a genetic link between CD and family members. This means that with first degree relatives there is a 1:10 chance of them having the condition.
Siblings 15% (1:7)
Children 10% (1:10)
Parents 5% (1:20)
Other relatives 3-5% (1:20-1:30)
General population 1% (1:100)
These figures refer to the chances of having active symptomatic CD
OR they could have CD but not have any symptoms
OR they could have latent CD i.e. It hasn’t ‘got going’ yet.
If someone is diagnosed early then they may be able to prevent nutritional deficiencies e.g. osteoporosis, infertility, anaemia, vitamin deficiencies etc. Undiagnosed coeliac increases the risk of malignancy by a small amount. The risk of small bowel lymphoma is increased by 50-fold, though this cancer is rare in the general population (1:50,000) so that it is still very unusual in patients with CD.
Screening for CD
This is done initially by a blood test for antibodies. If the test is positive then it is followed by biopsy, particularly to see if there is anything else present, apart from coeliac. Where the blood test shows a negative result, the risk of active disease is very low but the patient could still develop the disease in the future. The major ‘problem’ with being diagnosed coeliac is the gluten-free diet, especially with young people.
There is disagreement within the medical profession as to whether people with latent (inactive) CD should be restricted to a gluten-free diet or that family members without symptoms should be screened at all.
Research in Durham
Recent research in Durham, using a zoom endoscope, was able to show pictures of the lining of the small bowel in great detail. This had the advantage of giving immediate feedback to the patient as well as medical staff, as it was able to show the severity of inflammation/damage. The endoscope was on loan for research purposes only and has now been returned.
Questions and answers
Q. Can someone be diagnosed if they already on a gluten-free diet?
A. If no gluten is ingested then the blood test for antibodies, will show negative and a biopsy will not show clear results. The patient needs to be eating gluten for the test to be positive.
Q Is it possible to improve feedback from an endoscopy?
A. Not at present. The biopsy samples need to be analysed which takes at least a couple of weeks. The process is complex and complicated as they can show varied results.
Q. How long should you wait for a bone scan?
A. This can vary from a few weeks to a few months. Diagnosing bone density is not urgent and the equipment may be needed for more urgent cases.
Q. Are there more women with CD than men?
A. Yes and no! More women are diagnosed because anaemia is more likely to be significant (and therefore symptomatic) due to menstruation. Men’s symptoms are more asymptomatic and may not be recognised as early.
Q. If someone in the family has IBS but their blood test for antibodies shows negative, will the blood test be reliable?
A. . Yes. An negative blood test in this situation is adequate reassurance of the absence of CD
Q. If your son or daughter has been told by doctors they will not test for coeliac if they show no symptoms, what could you do?
A. There is no clear answer, but most doctors have an open mind and will test. It is important that children make up their own minds about whether they wish to be screened.
Q. Is there any way of telling how long you have had CD?
A. No. Symptoms can drag on and not be diagnosed as CD
Q. Is there a genetic link between CD and IBS?
A. IBS is a common condition and does not have a genetic element to it.
Q. If you have Irish ancestry are you more likely to have CD?
A. Yes. 2000 years ago farming of grains/cereals started in Mesopotamia and the Middle East. This method of farming gradually moved westwards so Ireland was the last place in Europe to start growing crops. Current information shows that people with the Coeliac HLA DQ2 gene increases in population from east to west. eg.
Israel 10%; France 17%; England 25%; Ireland 30%
Having CD, especially 2000 years ago meant that people were malnourished, and/or infertile so they died early or were unable to pass the gene on. Hence the east/west trend. The figures will change over time.
Q. Should babies in families with CD keep on gluten-free food for longer than those who aren’t?
A. Yes. For a year, at least. Evidence from research in Scandinavia supports this as they had a clear drop in diagnosis of children.
Q. Should people with mild CD stay on a strict gf diet?
A. There is argument as to whether it is ‘fair’ to keep people with mild CD on a gf diet. (It is particularly difficult to encourage teenagers to maintain such a diet.) If people, who have been on a gf diet for years, want to test to see how they respond to gluten then it is VERY IMPORTANT that they do this through a MONITORED PROGRAMME via the hospital. This would entail blood checks every 6 months and an endoscopy every 12 months.