Posted 9/13/2006 8:42 AM (GMT -6)
Yes, I was recently diagnosed with eosinophilic esophagitis.. I meant to post something, but life got in the way. Sorry.
I first discovered problems in 1999 due to a choking incident. At the time my gastro doctor hadn't heard of this condition and diagnosed me with silent acid reflux with a Schatzki's ring. I have been scoped every several years since then and my strictures kept coming back. Last year I started developing some very painful acid reflux. The major change in my life was increased stress.
This year my gastro doctor was doing more research and realized my condition might be caused by e.e. He went back to the previous biopsies from the endoscopies, and said the results showed a large presence of the eosinophilics. It can happen when the esophagus is irritated from acid reflux, so he didn't think anything of it. Another tell-tale sign was that I had several rings rather than one with Schatzki's ring. However, it's now obvious that I have ee, and the acid reflux isn't serious except when my diet is really bad and/or high stress. In some ways I'm lucky, but I don't know when my stricture is becoming serious enough that I need to have it dilated. In fact, that is a concern now. Apparently there is a greater chance of side effects from dilation for someone with e.e. More chance of an esophagul tear, etc. So my doctor will be less agressive in the future about dilating me.
The chest pain increased dramatically after I was scoped/dilated last year. I suspect there may have been some damage to the esophagus, although the gastro doctor won't admit it.
Like many others, I have asthma and allergies. The asthma doesn't bother me unless I am exposed to certain allergens. I went to an allergist last month and he confirmed that I am allergic to cats, dogs, dust, and ragweed. No major food allergies and no surprises. Like that article said often happens, the allergy tests were inconclusive since it's unlikely any of these (w/ the exception of dust?) could be the allergen. I found it very interesting that the allergist knew more about eosinophilic esophagitis than my gastro doctor. He suggested that I consider Flovent. It is a steroid inhaler, which is why my gastro doctor was hesitant. He said that if my strictures continue I should consider it. He said the difference between using this and the usual inhaler method is that the medicine has to be deposited in the mouth. He said it doesn't reduce strictures, but it does stop them from getting worse. He also said the one side effect is that the patient can get thrush in the mouth since the medicine changes the environment in the mouth. Irritating, but there are medicines to treat it and it's much preferable to choking. (The article skooby quotes mentions it.)
Another interesting thing. This condition can run in families. I have a brother who is ten years younger (38 now). He was having trouble with choking and had his first endoscopy done early this summer. He also had several rings in his esophagus, just not as serious. He was diagnosed w/ e.e. right off the bat. He told me and I was prepared to go into my gastro doctor at my next appointment to demand why he didn't catch it. Just a few weeks after I found out my brother's diagnosis my doctor called, asking me to come in because he thought we needed to modify the diagnosis. I don't know if this will impact how I try to manage this in the long term. I have taken steps to reduce the dust in my bedroom. Obviously we will be less aggressive in dilating. But I'm still taking Nexium -- I'm not sure why it's supposed to help.