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I'm one of the few Dutchman on the list with a son (9 years old) who is
diagnosed DH about three years ago (after years of medical searching).
A dermatologist did a skin biopsy, and diagnosed DH. No small intestine
biopsy was done. Since then he is on a GFD with good results. His skin is
normal again and only twice he had a few blisters again.

We hoped that since the GFD he would be less tired and would have more
appetite, but that staid the same (althouh he likes the GF bread more than
normal bread). Everything he does, he does slowly as if he knows that hurry
up whould exhaust him too much. He is also rather skinny, so a few weeks ago
we decided to go to a children's doctor, specialized in intestine to see if
something else "inside" is wrong...

This doctor mentioned that it would had been wise if the dermatologist three
years ago had done a intestine biopsy as well to know if our son also has
CD. He advised to do a CD test to be sure if he has CD as well or not, and
examine the condition of the small intestine.

To rule CD out, we agreed to do the test(s), although our son is not
enthousiastic to eat normal food again (being scared of the blisters and
itching again).
At first a anti-body blood test is done, which was negative. Now he is
eating normal food (this is the third day, no reaction yet) to see if/when
he reacts to gluten, after which another blood test will be done (which
should be positive). Two intestinal biopsies will follow, ultimately showing
CD or not.

I am curious if other having DH do have CD as well (diagnosed), in other
words:  is the CD test we have started usefull or not...

You could mail me privately ([log in to unmask]) and if you like I will put the
results on the list (I don't know if there are enough people with DH on the
list to get a reliable result...).

Thanks,
Bert Pleijsier ([log in to unmask])