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I am hoping that I might seek you advice about what to do next :
A short history :
At 2 years old my son was referred to a specialist because of chronic
diarrhoea. I trialed a gluten free diet for about 3 weeks and saw some
improvement. All the bloods came back negative and I was told it was
toddlers diarrhoea and he looked in good heath . His iron etc was normal and
he was of normal weight and height . (Of course the bloods were taken while
he was on the gluten free diet!).
The diarrhoea continued on and off. Last year after a stomach bug it
worsened and did not improve (though the rest of the family was well again).
We checked out all the other options i.e. parasites etc . So my doctor
agreed we could try some allergy testing as he had had some sensitivities as
a child and there are food allergies in the family. He showed allergies to
wheat, peanuts and eggs. Then I received the news that my sister (his aunt)
was diagnosed with celiac last year (biopsy confirmed). We eliminated the
foods peanut, egg and wheat and there was some improvement, but then it
worsened again. He also had "growing pains" / joint pain. I trialed a gluten
free diet (I now know I should have done blood tests first, I did not know
this at the time). Within a couple of weeks he was much improved. So we went
to the doctor and he referred us to a specialist. He did bloods. His iron,
B12 etc was normal and the blood tests for celiac came back negative. I
myself had been doing some reading and realised that blood tests should have
been done while on a gluten diet. So we went back on gluten and he was much
worse: migraine headache, diarrhoea , nausea etc. He stopped being able to
eat dairy. We kept this up for 3 weeks and did the bloods again: negative.
We could stand no more because I felt there was no hope of a diagnosis. We
went back to gluten free. He has been gluten free for a couple of months now
and all the food he could not tolerate before he can now eat, except the
gluten. So I think his gut is healing or is less irritated.  He was so sick
on gluten that the idea that he would need to stay on gluten for  weeks/
months to do a biopsy has put me off this option. And even if we did this,
I am not sure that it might not come back negative. He might be in a pre
celiac state. After all I realise that he is of normal weight and height,
his iron etc was normal. If he has even a trace of gluten he has diarrhoea
within 1/2 hour, turns a grey colour :-/ lasting a couple of hours and feels
sick for about 24hours.  I guess I have decided to wait until there is some
other kind of testing. I would appreciate your thoughts.
Thank you for reading
Tarnya Burge in New Zealand
Mum to 6

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