well, we all went back to the specialist doctor today to get the results of the labs. daniel was negative for the genetic marker for celiac, and had no gluten antibodies (which could have been because he hasn't eaten gluten since september, but it was still a good thing) and so was i. chris had one of the two genetic markers, but since his antibodies were also negative, she wasn't concerned with that. so, apparently there is only a 1% chance that daniel could still have celiac in the absence of those markers. good news! she told us to go ahead and put him back on a regular diet, and to watch him for signs that he is having trouble, but chances are very good that whatever the problem was last summer, it is not celiac disease.
so, why am i not dancing in the streets? of course i was relieved that daniel will not have to live with such a restrictive diet his whole life, and that none of the rest of us will either. as long as he continues to do fine, the problem seems to have solved itself. but, i also didn't feel as happy as i expected to. i don't know if i had just been preparing myself for the news to be different for so long, or what, but i feel confused and let down, and worried that there may be something else entirely going on that we don't know what it is. not that he is sick right now, just that he could be if we go back to how things were--but this time, without the celiac diagnosis to pin it on. i know, tomorrow has enough worries of its own, without me worrying them all up front.
but also feeling like all this time, energy and effort that i have been putting in these last 4 months, not to mention the expense and extra planning, was all just a big waste. did i just colossally overreact? is it possible that the sickness went away when we took out gluten just because of a coincidence? that makes me feel kind of stupid or crazy, like "those moms" who are convinced that every little thing that happens to their kid is some big emergency.
this is apparently the hardest good news that i've ever had to hear.
tonight for dinner we are having homemade whole wheat bread, and cake. with lots of gluten.
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2 comments:
I can understand your feelings, but feel you should be proud of yourself... You didn't just sit around whining when you saw Daniel wasn't well, you did something about it.
Things got better, right? And you helped quite a few people get connected to gluten-free info. And you did the best thing for your family and your little boy.
So be encouraged! You are a great mom who takes your kids' health seriously!!!!
christy--thanks for your encouragement! i think it was the initial shock that i had a hard time with...things get better as i see all the postitives!
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