Coeliac test negative - now what?

[wangle99]

Finally had the result for DS coeliac screen - its negative. Admittedly the Dr said he got that result over the phone and is waiting to see paperwork before 100% sure that is the case.

He has said to start DS on a gluten free diet asap and will review him in a year, we are getting an appt for the dietician.

Argh was so hoping it would be coeliac disease as it would be nice to know what we are dealing with but I feel just as lost as ever!

No surprise re: doctors, you will find many on glutenfreeforum who have given up on educating their drs and moved on to those who understand. It's a very complex area and many are simply not trained in that.

I have realised that I'm about one year ahead of DS's paediatrician.

First time I explained about him having intolerances and he laughed on my face, next visit a year later he justified DS reaction to milk despite a negative test result as... intolerances!

Second time I explained about the need to retest for soya as it was the thing that was causing more dificulties in gettings DS into a healthy diet. He told me that he couldn't see why soya could be a problem as it was "hardly" part of anybody's diet. One year later he lectured me on how soya is present in almost every processed food (a thing I knew when I asked 12 months before)

I recently asked about probiotics and enzymes and he told me the only way to deal with food allergies is total exclusion of the offensive food... someway I know we will be talking probiotics next year!

I read that it takes American adults an average of 7 years to be diagnised as coeliacs. During that time they have 35 days sickness a year; after diagnosis it drops to under 5. Medics who know what they are talking about in this field are few and far between.

We saw a paediatric dietician today, her opinion was that testing for food intolerances is a waste of time and that it should be sussed via an elmination diet.

Her suggestion was we try wheat removal only for 1 month but try and keep gluten in DS diet.

So that's what we will do from tomorrow!

you're doing a good job of educating your doctor, Isababel.