I’m one of those unfortunate folks who made the decision to stop eating gluten before I was tested for Celiac disease. This is unfortunate because I exhibited some of the classic symptoms of the disease for a long time without realizing what they related to. Knowing what I know now I would advise anyone with even an inkling of a thought that they may have Celiac disease to not stop eating gluten until they can be tested.
When I was in my early twenties I was diagnosed with a hiatal hernia and IBS. I always had a “sensitive stomach” and was keenly aware of bathrooms when making any travel plans. In fact, I can name more than a few anxiety filled situations where I feigned illness or ennui to get out of social situations explicitly because of my belly woes. I forwent eating, I took Imodium like it was a daily vitamin and I dreaded the familiar dying feeling that most foods seem to unleash upon my bowels.
When my stomach issues didn’t improve after my first daughter was born I was told that in order to find out what was wrong with me I would need a series of expensive tests. As a new Mom with little to no money I opted not to do that. I instead lived on Imodium and stayed away from trigger foods becoming vegetarian, as most meat made me very ill.
By my late 20’s I asked a new Dr. about my constant use of Imodium and told him of my constant stomach sickness which had been occurring solidly for over 10 years at that point. He told me taking Imodium excessively was ok and that was it. It was nervous stomach, it was IBS, avoid fried foods…yadda yadda. So I just figured that really was it, no sense worrying, taking Imodium was ok…plus Imodium is like magic, seriously that stuff saved my life.
So what’s my lesson in all of this other than Imodium being magical? Sure you may be a nervous wound up workaholic who turns whatever food you eat into fire water but sometimes guess what, you aren’t. It might be that you are eating foods causing inflammation, in fact you may be eating food that is causing your body to literally attack itself. Your body could be so wiped out actually, that your entire nervous system is on high alert, constantly, and it’s exhausted. Hindsight…also some Dr.’s are ‘stoooopid’.
So about that gluten.
The endocrinologist recently wanted to do genetic testing to see if I carry the gene for Celiac disease. Since my endoscopy and blood testing came back negative due to my gluten free lifestyle she wanted to rule out Celiac disease completely. Many of the things I suffer from are related to an autoimmune condition so even if I am not eating any gluten I can still be affected for that reason. Ding, Ding I carry the gene. The rarer of the two actually, and while carrying the gene isn’t a gluten death sentence, it is often triggered in folks with well, my immune system.
In a few weeks after I have my carcinoid test results back I will finally know a bit more. The good news is my antibodies tested negative for adrenal and thyroid. So I am not currently suffering from Hashimoto’s or Addison’s like my father and grandmother. I am still being annoyingly afflicted by Alopecia Areata (as is always the case when I try to grow my hair long…) but I have to admit to that being one autoimmune condition I don’t mind having haha. Hair today, gone tomorrow, I got over that affliction long ago. And so the journey continues!!