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I am very worried about three-year-old Evan. If you have any ideas
for me, please e-mail.
One year ago he became very ill. Evan had always been a "high-
needs" kids with a poor appetite, but the constant diarrhea, salty
sweats, fatigue, occasional vomiting and irritability were new. We
eliminated milk which ended the vomiting, wheat elimination saw
some improvement, then eliminating all gluten stopped the diarrhea.
Blood tests taken two months after being ill and before the gluten-
free diet did not suggest malabsorption. His pediatrician suggested
a biopsy which would be done in her office with no anesthesia. We
refused this brutal and invasive procedure for our little boy. Our
G.P. gave Evan a diagnosis of celiac disease with no further
testing.
Not seeking new pediatrician may have been our big mistake.
It took us a while to discover all the hidden forms of gluten in
his diet. I can only guarantee the strictness of his gluten-free
diet for the last seven months. But, in retrospect, Evan should not
have gone gluten-free before more testing was done. A bowel biopsy
performed under anesthesia was never offered as an option. Antibody
testing was not performed, either.
Evan is now 12--18 months speech delayed, has terrible tantrums
during which he bangs his head, and still fits the clothes and
shoes he wore before he got sick. He is growing, but very slowly.
He refuses all but a very limited repertoire of foods (gluten-free
pancakes enriched with almond flour, soy formula and shredded
carrots; homemade french fries; muffins and cookies; peanut butter;
fruit juices; cheddar cheese...not much else). He eats very little
food at all. We honestly don't know if Evan's problems are
behavioral, developmental, or medical.
Friday we drove for three hours to see another pediatrician at the
Children's Hospital. This doctor wants to do a sweat test for
cystic fibrosis, blood tests for antibodies and nutrition, and will
likely have the G.I. team do a biopsy under general anesthesia
after we re-introduce a regular diet.
QUESTIONS
- Must the regular diet continue for at least six months, even if
diarrhea returns (and stays) much earlier?
- Can cystic fibrosis and celiac disease be confused? Evan has no
respiratory problems.
THANK YOU
Thank you in advance for your ideas. I appreciate the support I
have received from this list over the last nine months or so.
...Pam
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