I'm no help on the diagnosis, but wanted to say that what the paediatrician is saying about coeliac disease simply makes no sense whatsoever.

1. Coeliac disease is a reaction of the gut to gluten, a protein found in wheat and other grains. The reaction to ingested gluten causes flattening of the gut lining which leads to diarrhoea and malabsorption, and hence eventually to weight loss. Now, it's possible some gluten might be passed into breast milk - I couldn't find any data on this in a quick riffle through Pubmed - but surely it would have to be in tiny quantities. How could ten days of ingesting such tiny quantities have been enough time for the baby to develop the kind of marked gut lining reaction that leads to weight loss?? (Less than ten days - it would have had to be going on for long enough for the baby to lose the weight, so the reaction would have had to be very marked almost immediately for this to happen.)

2. When coeliac disease is suspected, the appropriate action is normally to check a blood test looking for the antibodies that may indicate that this reaction is happening, then follow it up with a gastroscopy to biopsy the duodenal lining. It's crucial to do these tests and establish the diagnosis, as it obviously has major long-term implications in terms of restricted diet, increased health risks, follow-up - you don't want to be subjecting someone to a lifetime of all that if you don't even know whether they have coeliac disease in the first place. But the tests for coeliac *will only show up positive if the person being tested is being exposed to sufficient amounts of gluten in the run-up to the tests.* Otherwise, you get a false negative (since the tests all measure the body's reaction to gluten - which will be non-existent in a person who isn't consuming any gluten). Correct practice is therefore to advise the person to remain *on* their usual diet until the tests have been done. If this paediatrician actually is seriously suspecting that this baby has coeliac disease secondary to gluten in the breastmilk, correct practice would be to arrange the tests for coeliac *before* changing the baby's diet, to avoid a false negative.

Someone needs to be asking this paediatrician some serious questions here. Would mom feel up to taking a copy of this e-mail to him and asking... well, more politely put, but what the hell??! Apart from anything else, I really want to hear what this doctor has to say in explanation!

(In fairness, I'm not a paediatrician or a gastroenterologist. I am, however, a GP who does have to have a basic understanding of coeliac disease in order to deal with patients who have it and who may present to me and need appropriate initial investigations and/or monitoring once the disease has been diagnosed. Unless there's been a very recent sea-change in the understanding and management of coeliac disease, what I'm reading here just does not make any sense.)

(OK - also in fairness, messages do get garbled in being passed on. Maybe the paediatrican mentioned the query over coeliac disease as an entirely separate issue from the stopping breastfeeding and mom misunderstood. I would really like to get to the bottom of this.)

Enough unhelpful ranting. I will shut up... well, except to say that if this actually is what the paediatrician said, mum needs to think very seriously about finding another paediatrician.


Best wishes,

Dr Sarah Vaughan
MBChB MRCGP

             ***********************************************

Archives: http://community.lsoft.com/archives/LACTNET.html
To reach list owners: [log in to unmask]
Mail all list management commands to: [log in to unmask]
COMMANDS:
1. To temporarily stop your subscription write in the body of an email: set lactnet nomail
2. To start it again: set lactnet mail
3. To unsubscribe: unsubscribe lactnet
4. To get a comprehensive list of rules and directions: get lactnet welcome