I’ve been dealing with disabling but ill-defined health issues for almost a year now. I’m at a standstill as far as treatment goes, because no specialists seem interested in me, and I’m trying desperately to do some research on my own and find others with similar experiences. I would like to post my history here to see if anyone has any insight into what I’ve been experiencing. The IBS portion comes fairly late, so please stick with it! 🙂
In March, 2017, I started having severe lethargy, muscle aches, weakness, mild nausea, and headaches. I thought I just had a viral illness, but it didn’t go away. After about a month of this, my legs, then my arms, got considerably weaker. I was admitted to the hospital for a week and treated for Guillain-Barre Syndrome, even though I didn’t have really clear diagnostic markers for the disease. I improved with IVIG, went home, and slowly got better over the next few weeks. I was told this was a one-off disease, and after recovering I would not get worse again. But about 6 weeks after my hospitalization, my fatigue and weakness got worse. I saw my neurologist, who said my clinical exam was fine. They did a neuromuscular test and that was normal too. Still I couldn’t lift a grocery bag and my legs shook walking down the stairs. I improved slowly again without treatment.
At the end of July, I felt quite a bit better, though still had issues with fatigue and mild weakness. At this point I was appalled with how much weight I had gained over the previous few months. I began intermittent fasting to lose weight (eating only between 2 and 8 every day). I continued to improve, more rapidly now, and felt fantastic throughout August and September. In early October the fatigue returned, then the weakness. Now I also had persistent nausea and very dry eyes as well. In retrospect, I kind of fell of the intermittent fasting wagon about the same time I started feeling worse, but these things might not be connected. I struggled through work for about 3 weeks, then one day woke up and when I got out of bed, my legs collapsed under me. I have been on medical leave since. I saw my neurologist again, but after 4 days of complete rest my weakness had improved considerably and my exam (as well as a repeated neuromuscular test) was normal. My fatigue and nausea persisted, though.
About 2 weeks after this, severe gastrointestinal issues began quite suddenly. My nausea got much worse, I began having cramping and diarrhea after about 2/3 of my meals, and I had a couple bouts of vomiting. My nausea after eating often got so bad that I would have to lie down and stay still immediately to keep from vomiting. This continued for a month without getting better, though I had a couple stretches of a few days where I would go from diarrhea to bloating and constipation. I started doing some research and thought I might have celiac disease. I had my doctor run blood tests, but they were negative. A strange thing happened though. I cut out all gluten while I was waiting for my test results (about 4 days) and the diarrhea immediately stopped. Nausea, energy level, and brain fog got significantly better too. I decided to keep gluten out after my celiac screen came back negative, and the improvement lasted about a week. Then everything got worse again.
My doctor started a full gi workup at the beginning of January and I’m waiting for an appointment with a gastroenterologist. But I decided to go on a low FODMAP diet and I have not had diarrhea since then (other then 2 times when I ate high FODMAP food). Two days ago I did my first deliberate reintroduction with wheat pasta (fructans). Within an hour: severe nausea, lethargy, brain fog, stiff fingers, hands shaking, legs shaking when walking downstairs, diarrhea. Lethargy and weakness lasted for about 2 days, but better today.
This severe reaction prompted me to do more research and I found this study: http://gut.bmj.com/content/early/2016/07/21/gutjnl-2016-311964
I’ve also seen studies that say NGWS is really (usually) fructan sensitivity (I haven’t tested any non-wheat fructans yet, but I’m eager to see if they cause a similar reaction). But I haven’t seen anything anywhere linking FODMAP sensitivity with systemic autoimmune or neurological issues, only with IBS. I know I can’t be the only one who has experienced something like this. And is it possible that if a wheat/fructan sensitivity is causing a systemic immune response, it could have done so for months before I had any g.i. symptoms?
Any thoughts or information on this would be very welcome!