non-invasive tests to confirm coeliacs (celiacs) disease?

[SnowyMoon]

My son has been showing symptoms of coeliac's and so the GP told us take him off gluten which stopped all the symptoms and his weight and height have taken a huge leap up.We are awaiting appointment with a pediatrician but he called me first to tell me we would need to put my son back on gluten in order to test for coeliacs by doing a biopsy and we had to confirm diagnosis of coeliacs.I am not comfortable doing this as my son has congenital heart disease and operations have always been avoided unless they are life and death situations. Both the cardiologists and I feel that since symptoms have been so strong and gluten being removed has had such a positive effect the biopsy would be unnecessary and dangerous but the pediatrician says it is essential. We meet with him again on 23rd July and just wondered if there were any alternative less invasive diagnostic tools to diagnose this condition? Blood tests have been excluded for now since they could not draw any blood from him due to his abnormal anatomy.

[SnowyMoon]

Thanks for your reply. I think, for now, i will stick with my decision not to have him tested,  he's due a mitral repair or replacement in the next year or two so I think getting him up to strength for when that comes around might be more important for now. You are right though, i hadn't considered how he might deal with it when he gets older and has more choice in decisions about what he eats etc. but if it isn't going to harm him to leave the decision until later then i think waiting a few years is the best option. Thanks again for your help to get it straight in my head! :)

[mgonzalezmd]

There are a bunch of long term effects of UNTREATED celiacs disease.  But if you are able to commit to treatment without the confirmed diagnosis, I am not sure there is any real benefit to gettting a confirmed diagnosis.  It sounds like your child is quite young.  So you have to wonder if you will be able to commit to the treatment long term without a confirmed diagnosis (2 years from now, 5 years, 10 years)?  What about when he is a teenager and deciding what he eats?  Will he be able to stick to the diet based on a suspected diagnosis?  Just throwing these things out there to consider.  Of course you could persue a more formal diagnosis later when he is older and less fragile (but he would need to be on a regular diet for a while prior to testing).  

More about celiacs and long term issues can be found here:
http://medschool.umaryland.edu/celiac/faq.asp

[SnowyMoon]

Thank you so much for answering, I don't suppose you know if there are any other benefits to having a firm diagnosis? The gluten free diet has been much easier for us to adapt to than the high fat/ increased calorie diets we had to follow before and now he is gaining so much more weight so if the only benefit of firm diagnosis is to make us commit to it then I wouldn't want to put him through any more than he has to. I'm keen to go armed with all the info before I go into the pediatrician so I can consider my options and hopefully make the right decisions!

[mgonzalezmd]

To make the diagnosis, blood test can help, but are not perfect.  The gold standard is a biopsy of the intestine (while still on gluten).  Some would say a second biopsy once off gluten is also necessary.  With that being said, you always have to weigh risk versus benefit with any medical treatment or procedure.  Adopting a gluten free diet can be very difficult for some families and having a proven diagnosis helps the family make the big commitment to a long-term, gluten-free diet.  If biopsy is off the table, finding a way to get some blood may be a reasonable compromise (but there can be some false positives or false negative with the blood test).