Sunday, July 27, 2014

Where I almost give up hope and then find out there may be a better way

There comes a time when you want to say "screw it" and do what make you feel less sick.  But then a light shows up and you realize that maybe it's not as bad as you feared.

Recently one of my coworkers noticed that I was eating gluten-free.  With a knowing smirk and crossing his arms, he asked me what happens to me when I eat gluten now.  I told him I curl up in a fetal position and wish for death, before dragging myself to the bathroom for my digestive system to try and rip itself apart for several hours, and it takes about 24 hours before I feel anything close to normal.  He opened his mouth, closed it a moment, nodded his head with a chuckle and said, "You have the very same symptoms my mother has, and she has Celiac's.  You probably have it too."  Since then, he's been telling me about restaurants with good gluten-free food and offering all sorts of advice.

It made me feel a little more confident that my plan to take a week of vacation to eat enough gluten to show up in a blood test.  I mentioned it to my sister, who said that you really should be eating gluten for two weeks, but even then her tests weren't positive because she has an over-active immune system.  My inner skeptic wanted to come out and argue, until I remembered how long it took one of my doctors to find the right level for a drug in my system because my liver metabolized it so fast.  I also remembered that according to the 23andMe DNA reports, my sister and I have identical immune systems - we share all 359 SNPs currently identified as affecting the histocompatibility between us.  But then, even though we'd make greaet organ donors for each other, my sister and I have differing lifestyles.  Maybe it's possible that I wouldn't need to eat gluten for so long.  I mean, I could hope, because I honestly don't see how I could handle being sick for so long.  It's not like I have a secondary income to rely on while I deliberately make myself sick for a diagnosis.

Today at church, I ran into another person who did the same thing I did - went on a gulten-free diet out of frustration, only to not be able to eat it in any form now.  She went back to eating gluten for over a month and her test still wasn't conclusive.  Her doctor told her that it can be very hard to get a postive test, even for those who had tested successfully for it previously after going on a gluten-free diet for several months.

Obviously, I needed to do more research on this test.  So, I checked and read the following:

"Keep in mind that positive antibody or genetic test results only suggest the presence of celiac disease—the test results cannot confirm it. If these screening tests come back positive, the next step in diagnosing celiac disease is to get a biopsy of the small intestine."

In short, to really prove it the doctor has to see damaged villi.  According to the page that covers the biopsy: "For biopsy results to be accurate, you must be eating gluten (at least 4 slices of bread) for one to three months prior to the procedure."  

I was about to give up hope, when I read that you can also be diagnosed by testing positive for dermatitis herpetiformis.  Looking at the pictures, I had a major outbreak of this about three years ago.  The skin in the area is still scarred and I pretty certain I have an active patch on my back, which drives me nuts.  In that case, I only need a skin biopsy to prove I have Celiac's.  Talk about being thankful for weird things.

Did a little more thinking and research.  According to my mother and her step-mother, I had horrible colic as a child until my mother's step-mother put me on 2% milk.  For a moment, I wondered if maybe I was reacting to the gluten in breast milk, because my great aunt told me that I would let other people feed me without any problems, but I would scream bloody murder when my mom tried to feed me.  However, after reading this from the University of Chicago Celiac's Disease Center, I'm thinking that it wasn't from the gluten in the breast milk.  It probably wasn't gluten related at all.  However, it is possible that when I was at my grandparents' house I only had rice cereal, and when I was at home, I was occasionally fed Cream of Wheat.  Mom's no longer around to ask and Dad doesn't remember after almost 50 years and four other children.  On the above website, I did read: "A large prospective study conducted in Colorado showed that if gluten is given to the infant too early (i.e. during the first three months of life), this highly increases the risk of subsequent onset of celiac disease compared to the infants who were first given gluten around four to six months of age."  So, it's a possibility, because I do know that we occasionally fed our infants Cream of Wheat in our family.  And it's not like this information was available then.

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