Undiagnosed

When C was 15-16 months old, he’d had this unusual diarrhea for about 2 months.  It was orangey colored and very mucousy (sp?).  I nursed him until 14 months.  It was right after I stopped nursing that it started.  I took him to the doctor and they thought it must be parasitic.  They did a stool sample and there were no parasites.  They then decided it was probably an allergy to milk since he had just started on cow’s milk.  Removed the milk and it eventually got better.  They wanted me to reintroduce milk, but he was fine on soy milk and rice milk so I left it alone.  Until he was very underweight.  We had moved back to California and his new doctors were concerned with his weight and wanted him to start trying milk.  I added it back in his diet and there were no problems.  He was usually floating around the 10th percentile for weight and 50th – 75th for height (birth was about 50th/75th).  When he was about 4, his weight dropped down to the 4th percentile and I was looked at harshly for having him on a vegetarian diet.  He has never eaten meat and now at 10 years old I can SOMETIMES bribe him to try some for money…  Anyway, his weight and the way doctors look at me about it have always frustrated me.  When he was diagnosed with diabetes, I had brought him in to the doctor’s office.  I called and said I needed him tested for diabetes.  We got there and the Dr’s first idea was that he was malnourished.  Wanted to know what I was feeding him, what a typical day was meal-wise.  Then, came back in the room and informed me that I was correct and he was in DKA.  Handed me some printed papers about what that meant and told me to drive straight to the hospital.
Two months later, he was still losing weight and the blood work came back saying it was celiac disease.  I had never even heard of this before.  The word “gluten” sounded a little bit familiar, but I never would have guessed what it meant.  The more I read about it and it’s atypical symptoms, the more I wondered if C had suffered from this his entire life.  Moody, irratible, generally not feeling good… These were all very normal for C.  Not that he didn’t have plenty of great, happy, fun times in his life, but moody was definitely something people could use to describe him.  Changed the diet, changed the kid.  Granted, he’s back to being moody, although I still think less than ever, but his ever changing blood sugars probably have a lot to do with that also.
Anyway, I just read an article about a little boy who’d accidentally been eating gluten (with celiac disease) and had mucous is his stools.  This got me thinking.  I’ve meant to look it up, but keep forgetting.  Sure enough, I’m reading that problems having to due with inflammed intestines will cause stools to contain mucous.  Examples given are Krohn’s Disease and Celiac Disease.  Other possibilities are parasites.  It broke my heart that 10 years ago they were quick to test for parasites, but nobody thought to check for Celiac.  It breaks my heart that recently I’ve read two articles suggesting that untreated Celiac Disease could actually be a cause for Type 1 Diabetes, not just a related autoimmune disease.
I guess I shouldn’t be suprised.  They say that it typically takes 10 years for a person to have symptoms of Celiac Disease before diagnosis and we’d be right on target for that.  I just really hope that it changes soon.  I hope doctors start testing for this more routinely.  My other son and I were tested.  Just a vial of blood and under $100 and it was done.  Why are more people not being told they should get this blood work done?  One in 133 people have it?  There is a serious lack of awareness going on.

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