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Melissa writes: “I wanted to thank you for your article in the Scott-Free Newsletter on how long it takes children to get celiac disease- see: gluten and the brain. I am the mom of two, a self-diagnosed celiac, and my oldest was sick for almost a year, and the doctors still didn't see a need for an endoscopy. I didn't want to wait, while he fell down in the growth charts. His anemia didn't resolve, and he felt horrible … so I put him on a gluten-free diet and he felt so much better.
I got my son back, and he started dancing. So, I ordered a stool test from enterolab (www.enterolab.com), which I know is controversial, but it was enough evidence to convince doubting family members to take it seriously (his numbers were all 2-10 times higher than upper normal limits). He became himself again, but we still struggle to regain some of the growth losses. With my youngest, I carefully introduced gluten (and sometimes accidentally) and he gets very sick from it with painful gas and diarrhea. I also had genetic testing done on him, (he is positive for HLA-DQ8). I am much more confident now, from past experience, and with you to back me up, in telling everyone that he's just like his brother, and can't have any gluten.
Fortunately he wasn't sick for any prolonged period of time, and didn't develop the other food allergies and picky-eating that his brother did. When he's older, he can test it out some more, but I'm not going to make him sick for months or years just so that a lab can tell me what I already know.
Some doctors (and patients) think that the gluten-free diet is some type of punishment, worse than being sick, but the time it takes to get the "definitive" diagnosis, while getting sicker and sicker, is often, as you say, inhumane.” Melissa. |
