October 26, 2005 8:32 AM
Down syndrome and celiac disease
This is for the benefit of my readers who have children or loved ones with Down syndrome.
In some areas, our kids are more vulnerable - but you already knew that. I just discovered a new one. When our pediatrician ordered routine blood work on the boys (for those new here, I have four sons with Down syndrome - one by birth, three by adoption - you can google Down syndrome on the left sidebar for more about them, but the youngest three are those handsome fellas in the bathrobes a few entries back), I got a call back that Jesse had tested positive for celiac disease.
"That can't be possible," I insisted. Jesse's favorite foods are bread and pasta and he's been eating them heartily and with no problems all his life. But a repeat of the test showed the same results and we're not talking borderline, but major indicator. I've since learned, through our first visit to the gastroenterologist, that people with celiac disease sometimes exhibit no symptoms even as damage is accumulating interiorly.
Jesse has had slow growth - which has picked up considerably since his tonsils were removed almost a year ago (we had all the boys' tonsils removed and they have been remarkably free of ear, sinus, and throat infections ever since - plus breathing better at night and shooting up in height).
Anyway, the gastroenterologist said that doctors are gradually becoming aware of the need to test people with Down syndrome for celiac disease - which made me grateful for our incredibly gifted pediatrician, Dr. Sandra Groeber, who really knows her stuff and keeps up-to-date so faithfully. She also said she had had a 19-year-old patient come in who tested positive with no symptoms and whose final diagnosis was positive. His mother thought he'd never be able to handle The Diet, but he did and he is thriving.
So - the final diagnosis is made with a scope sent down to obtain a sample of the intestinal lining. For Jesse, this will happen next Thursday at the hospital under sedation. I have put off even researching the dreaded special diet until I know for certain - why get worked up and spend all that time unless I know for sure? - but am really hoping/praying that the Curtis family will not have to go gluten-free - because I can't imagine serving the things Jesse loves to everyone when he can't have them.
Plus there's that little detail of our family motto: "One for all and all for one" (from Dumas’ The Three Musketeers).
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Comments
Is SPELT gluten-free? I have a friend who eats wheat-free and she makes AWESOME bread, tortillas, dumplings, muffins, cookies, pie crust...all out of spelt. We prefer her stuff to storebought, all the time, anytime.
Posted by: floorplan | October 27, 2005 10:33 AM
Barbara...today is Thursday, so must be the day that the endoscopy is scheduled.
I am not surprised at all at the linkage between celiacs and downs. There is a high linkage between autism and celiacs, as well...and really, researchers are pretty sure they only know the tip of the iceberg when it comes to the relationships between these diseases and other diseases.
Yes, indeedy, Jesse may be asymptomatic right now, but Celiacs is one of those diseases that will affect him greatly over years of time. It can affect everything, really...behavior, ability to learn, even his teeth.
If, indeed, the scope gives you the gold standard "yes" for Celiacs, then we should talk. I've been cooking gluten-free for 2 years now...it is possible to make your own breads and sweets. A lot of chips are still okay because they are often corn or potato based. It IS a challenge for a large family...but it CAN be done. We all eat gluten free because...well...we feel the same way. All for one, one for all.
Posted by: Holly | October 27, 2005 2:56 PM
Dear Barbara, eating gluten free may seem daunting at first, but there are plenty of cookbooks available nowadays for celiacs. There are even gluten free mixes you can buy for making cakes, breads, muffins, and waffles available.
The benefits of feeling better will overcome the desire for wheat-type things eventually. And once you get past the cravings, it gets easier.
I don't have celiacs, but do have wheat sensitivities and it is possible to eat well without it.
Posted by: Cheryl | October 27, 2005 10:05 PM
