Hello. I am sorry that I didn't have time to sit down and write you a response yesterday. However, I wanted to share some tips with you. When I was first ill and undiagnosed (had never even heard of a mast cell), I was just like you in that I couldn't eat or drink anything. Even a bite of food would send me into anaphylaxis -- masto style anaphylaxis, that is -- with the diarrhea, stomach pain, body tremors, nausea, passing out, etc. While no one could figure out what was wrong with me, I quickly realized that ingesting anything was partially causing it. So, I stopped eating out of necessity. I was so ill that I was bedridden (when you don't eat, you eventually lose your energy) plus my body was battling inside from what I could tell. The most I could do was to sip gatorade, water, and the tiniest bits of chicken soup broth. I seriously couldn't have more than one sip every 10 minutes or I would just start all the symptoms.
It took 4 weeks for my body to calm down and I began to recover. I figure that it just needed that long for it to heal itself. Very slowly (still bedridden) I was able to eat a little more soup at a time and even add a little white minute rice. Then part of a piece of toast. As I began getting better, I started a journal/food diary on my computer so that I could track and identify what my safe foods were. Every day I recorded various pieces of info, such as the date, my weight (this was a concern because I couldn't stop dropping 2 or 3 lbs every day), what I ate and drank and how I felt after ingesting that. I tracked this for a couple months, but was quickly able to identify my safe foods (and I wasn't very adventurous -- I only ate maybe 5 foods or so). I didn't care if the foods were boring, though, because when you get that sick from food, the allure of eating completely disappears. I simply forced myself to eat tiny bits throughout the day as a means of giving myself some energy.
Obviously, it wasn't only food that was causing my problem, but I didn't know that. I did know that I was so fatigued all the time, that I didn't want to do anything. So, I pretty much just rested at home and would occasionally go out to a movie with my husband -- as long as I could sit and rest, it was better than trying to do anything. Even walking from the parking lot to the grocery exhausted me and made me feel ill. So, I pretty much changed my lifestyle to include resting all the time. I didn't realize it, but this was exactly the right thing to do because it allowed me to avoid all triggers as much as possible and let my body heal.
As I got better, I was able to start adding a bit more food and activity to my lifestyle. Somehow I just knew what was making me feel better, so I completely overhauled my lifestyle (career change as well) and started getting better. I was able to start living my life again, although I was always fighting my mysterious symptoms. I got better and better, though, and was happy enough for the next 10 years. Eventually, I got annoyed with not feeling good all the time, though, and pushed for more answers. That is when I discovered Mast cell diseases, found Dr. Akin, got the right meds and then quickly got much better.
So, you see, you are not a freak of nature in your inability to eat! LOL. Perhaps you could try keeping a very detailed journal and in the meantime, just rest and be very patient. Eventually your body should calm down. If you are already on prednisone, then that should help. Just give it some time and get some good movies and books to relax with while you wait. I guarantee that you won't have to wait the 10 years that I did to get really better!
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