So, I’ve sat with the information that I have been officially diagnosed with celiac sprue disease for a bit over a week now. While I knew I had an issue with gluten I guess I hoped that the test would come back something other than positive. And, initially, it did.
On the first trip back to my GI doctor after having drawn 1 million vials of blood, the lab forgot/did not do the main genetic test. <sigh>
On the second trip back, the lab’s results on the genetic test was negative. With my abnormal transglutaminase test result late last year, the anecdotal information that was consistent with the traditional misdiagnosis of celiac (IBS, belly issues, itchy rash, anemic beyond belief, malnourished diagnosis years ago…) my doctor was baffled as to the negative genetic test.
I asked for a second lab test done at a different lab and the doctor wanted to see the backup documentation to the genetic test already done. All of the percentages were not sent to the doctor; just the lab’s assessment and interpretation. Needless to say, when my doctor saw the actual lab test results and the levels the genetic test was NOT negative. It was clearly positive therefore celiac sprue cannot be ruled out.
So, days before my birthday it was confirmed that my various nutty symptoms including losing my sense of smell were all associated and related to having celiac disease.
I am so not the picture of celiac disease. First off, I am of Caribbean-American (read: Black) descent. Celiac sprue is prevalent in Mediterranean and Celtic cultures. So, now a deep search into my heredity is warranted.
Right now, I have no words. This is not a life-threatening condition but it is considered an autoimmune issue so my children must get tested. Until I know for sure, regular birthday cakes, grilled cheese sandwiches, biscuits and the like will not even be introduced to her. I’d love to be able to say that in the 13 months since I’ve been gluten-free I learned how to make a tasty loaf of bread in my Breville bread maker. And, that I can make a killer gluten-free cheesecake — I can’t. I’ve been too scared and unsure of which flours to use and in what precise proportions.
Gluten-free baking is different from any other type of baking I’ve ever done. And here’s the true rub — I owned and ran my own bakery for about 8 years. Yup. I’m a TOTAL gluten head. Dunkin’ Donuts was my favorite place in the whole wide world, second only to every delicious smelling bakery I’ve ever passed. I used to eat dessert at every meal. When I was a vegan I made VITAL WHEAT GLUTEN RIBS from scratch! I LOVED wheat/gluten. I made the bestest fluffy biscuits using my Grandmother’s recipe.
So, now that I have to leave that stuff alone…what do I do? I just gave away my cake decorating paraphernalia just yesterday. Why ice cakes when I can’t bake them?
I’m sure that this is some sort of grieving process/withdrawal reaction but it feels very final. I guess things will start looking up when I can make a tasty gluten-free cake that does not look like my sad lavender flower birthday cake.