This is my first post and my story is a little complicated so bare with me, I will try to make it short. Just looking for some feedback and anyone that experienced something similar or any advice. Little background: 26 yr female vegetarian for 5 yrs, was active before symptoms began
It all began back in July 2012. I started felling tired all the time, extremely sore neck and shoulders which caused severe debilitating headaches, brain fog, hot flashes, body aches, lightheaded etc (no stomach issues). I kept going to the doctor saying something was not right with me and kept getting the same answer, it is muscular. So I changed how I sat at work, did neck stretches, spent tons on chiro and massages. No releif. I almost passed out while food shopping so my 4th time to doctor I had done my research and said test for everything, Lyme, west Nile etc. (not gluten). My doc also ran a mono spot which to my surprise came back positive. I cried when she called because I was so relieved to have an answer and an end in sight. I was on work restrict of 1/2 days for a month. They said there is nothing you can do but rest. Very slowly I started to feel better. I wasn't myself until the end of October. This time period for me was a personal h*ll so I was so happy to have it behind me.
Fast forward to January 2013. The sore neck hit me first, then the awful headaches and hot flashes. Pretty much every symptom had returned. I was 100% convinced I had mono again. And this time it hit me even harder. I couldnt work at all, I was off work full days starting in early March with no diagnosis (chronic condition they called it) To make long story short it took me 5 visits to the docs again to get it through to them that this was not muscular and had to be mono again. They finally ran a more extensive blood test to see if mono was active currently and it was. No one could explain it. My CBC blood tests were normal. Last time they were elevated. I rested daily from early March and hardly left the house to do anything, I was told to be off work for 4 weeks and rest. I was starting to feel a little better and then March 22 I felt a million times worse. I began to notice when I felt my sickest I was burping a lot and even had some gas which always made me feel better. Usually during this time I had hot flashes too. One night I woke up with severe pain in my chest. I was so scared it was my heart. Then I starting burping and the pain went away slowly. Also good to note was that I wasn't sleeping well at all. One night I awoke at 4am and couldn't get back to sleep until 8am. Sometimes I just couldn't fall asleep until very late.
After that scare, I decided to see a diff doctor. He right away said I do not think you have mono again. Your CBC levels would be elevated if fighting off a virus and the other test isn't all accurate. He said I probably have something post viral and thinks CFS. I mentioned the burping and he didn't know what would be causing it besides a medrodose pack I had finished a while ago. I mentioned maybe systemic yeast as I have struggled with chronic yeast Infections for years. He pretty much said that was not it and doctors do not really believe in that. He decided to treat it like CFS and prescribed tramadol for my neck pain and amitriptolyne to help me sleep. He also mentioned a gluten free diet in passing. I kind of laughed it off and decided to research it some more later.
That night I took the tramadol and the neck pain was relieved significantly. I ate some tuna with pickles and a wheat frozen pizza. That night was awful. Severe stomach pains, gas, burping, chills and hot flashes. It lasted from 9pm-2am and it was awful. Something in my brain clicked and thought maybe the gluten from the pizza did it. Saturday March 31 was my first day gluten free. I also begun tramadol 2 times daily and the other for sleep at night. The week went well. I was feeling much better. Able to get up and do a few things. I didn't know whether to attribute to meds, diet, just good timing or what. The neck pain is still there when the pain meds run out so the diet hasn't eliminated them and I'm still having trouble sleeping.
Here's the kicker, I was doing very well until last night I awoke at 3am with severe stomach pains again. I couldn't pass gas or burp so I started throwing up stomach acid. After that I could burp some and my stomach was ok enough to sleep. But this morning I awoke with an upset stomach and it lasted all day (still there now) with burping and gas all day. I hadn't eaten any gluten and am 99.99% sure there was no cross contamination. The only single factor to my two worst stomach pains was having tuna that day. I can't imagine it was from the canned tuna. Right now I don't know what to do.
Do I continue the gluten free diet? I've read I can't be tested if I'm not currently eating gluten. I wish I would have been tested before going gluten free. I am also afraid if I go without eating it, I will be intolerant forever as I've read ppl have problems with the body processing it after cutting it out. I don't want to stop eating it if that is not the problem.
Do you think the mono caused a gluten intolerance? How do I know if gluten is the culprate if I've already taken it out of my diet and now had stomach problems? Could tuna be the problem? Anyone have any experience with systemic yeast? I can't find a whole lot about it on the Internet but still consider it a possibility. What else could be causing all of these symptoms? What could be causing the stomach issues? Are they related?
I am going to see a neuropathic/alternative medicine doctor on Monday as well as my regular doctor to see how the tramadol is working. He said if my neck muscles are still so tight he wants to do trigger point injections. What should I be asking these two doctors? I just want some answers and some way to get back to being normal me. I have also been tracking my food and how I feel for the past two weeks (one of them gluten free).
THANK YOU FOR TAKING THE TIME TO READ THIS! From a person struggling to gain their life back, I sincerely appreciate it!