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Last year (31 Oct 2003) Agnes Mikesh wrote about concerns that she might have IGA nephropathy, because of a brother with kidney disease and blood in her urine, and asked how many others had been diagnosed who are celiac with IGA Nephropathy (deposits of IGA on the kidney, sometimes leading to glomerulonephritis and ultimately kidney damage).
I did not see any summary but since her only symptom was traces of blood in the urine I asked my GP about this condition since over the past two years I also have had persistent microscopic haematuria without urine infection.  (I had already had a cystoscopy and kidney ultrasound to rule out bladder cancer and bladder/kidney stones and had been told it was idiopathic haematuria which was "quite common and not to worry about it"). 
As a result I was referred to the kidney specialist whom I've just seen. His conclusion was that yes, it was quite likely that I had secondary IGA nephropathy, because of  CD and a history of other autoimmune conditions in the family.  To be certain, a kidney biopsy would have to be done and this is not justified in my case because I do not have other symptoms (mild proteinuria, oedema, hypertension, renal insufficiency). Also the biopsy is not without risks and, even with a confirmation of IgAN, there is no treatment of the very early condition which is quite common even in the general population and often benign.
Nothing can be done to avoid the serious consequences that can result later in life but I was recommended to have regular monitoring for traces of blood and especially protein /creatine at my annual coeliac checkup.  He also recommended that my 15 year old coeliac son had these checks as there is some familial association.  We are both healthy with low blood pressure and on a strict GF diet so I believe the outlook for us is favourable.
However it is something  (yes, yet another thing) other coeliacs should be aware of especially if they find, as I did, that their doctors try to treat their haematuria with antibiotics for non-existent UTI infections or suggest a other procedures like cystoscopy.  It would then be worth mentioning secondary IgAN as a possibility.
If you search in the Listserv archives under 'nephrology' you will find previous correspondence about this going back some years.  The connection with CD is now definitely recognised though there seems to be no recent research on the incidence or morbidity of coeliacs with this condition. It may be that the relevence is the other way round: ie people presenting with IgAN should be tested for CD.
The best web article I have found on it was from emedicine (quite technical): http://www.emedicine.com/med/topic886.htm though there are lots of others.
This study relates CD to IgAN: Am J Gastroenterol. 2002 Oct;97(10):2572-6 Celiac disease and HLA DQ in patients with IgA nephropathy.Collin P, Syrjanen J, Partanen J, Pasternack A, Kaukinen K, Mustonen J http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12385441
Kidney disease always sounds rather alarming so please remember that diagnosed coeliacs with this condition do not necessarily get these complications.
Charlotte Ward-Perkins, Oxford, UK

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