Jenny (from the UK) shared with me that she fought year after year to find out why her daughter, Holly, was sick. Doctor visit after doctor visit. One trip after another to the hospital. Missed school – lots! Seven years. SEVEN YEARS! – and she was only eight when finally diagnosed. Being sick was her life. Parent requests to have her tested for food intolerances and anemia were rejected – over and over again. They were told her problem was constipation and she would grow out of it. Constipation!?! She would go four to six weeks at a time without a bowel movement. The hospital had her on so many laxatives and stool softeners that she was on three times an adult dosage. Constipation!?!
When mom requested celiac testing after learning that a relative had it – her request was rejected. Why?!! Seriously. Why??!!! I guess diagnosing her with a behavior disorder, suggesting that she was withholding on purpose and required a psychologist made more sense. ugh! But repeated requests continued to be rejected. Holly had gotten so sick that mom was afraid she was going to lose her. She was so malnourished (despite eating) and extremely anemic. Her body became so full of poop that she could take nothing else in and vomited when she ate.
Finally, a hospital visit - and mom refusing to leave until testing was done. One test. A simple test. A life changed. A few weeks later, with her daughter now gluten free, Jenny finally got the chance to ‘meet’ her daughter for the first time. Holly, a once very withdrawn, shy little girl who found it difficult to socialize and make friends became healthy. The removal of a protein found in wheat, rye and barley and she is now a “cheeky, back chatting, moody, out-going nine, nearly ten year old,” according to mom. Being diagnosed – finally – “was a life changing event”.
WONDEFUL that mom now has an answer for her daughter - and by keeping her gluten free she is now healthy and happy and everything she should.
Of course regaining health is one thing – THE BIGGEST thing – but getting others to understand, well….. that’s sometimes another. Unfortunately, school became the next hurdle. After being accidentally given something at school with gluten, mom’s complaint received this response, "well Mrs., we shall give her nothing at all and that way no mistakes will be made." ?? Sure - 'punish' her for having a food intolerance - that's the way to treat our kids. This is disturbing and very very sad. Although, to be completely safe - especially with this attitude, they shouldn't give her anything on their own. But work with mom. Let her know ahead when something special will be offered. Give her a chance to supply appropriate replacements for what the other children are offered.
Awareness of this disease and the ‘simple’ cure still has a ways to go. (No, celiac is not actually cured---but a gluten free diet can sure feel like a person is cured from illness.)
No child should suffer for that many years when a ‘simple’ test can possibly provide life altering answers.