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IBS and systemic/non-g.i. autoimmune symptoms

Hello all,

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!

-Amy

  1. I know it has been a few months but I just joined and saw your post. It rang true for me. I've had IBS-D symptoms since a teen (now in my 40s). Theythey got worse in the past 5 years and I started going to many specialists starting with GI. I've now seen 3 GI doctors and a Rheumotologist; only one thinks I could have any thing more than "just IBS." I have now had a colonoscopy, Upper GI and capsule study. No evidence of Crohns, Ulcerative Coilitis, or Celiac. But I have I increasing Reactive Protein tests over time and am positive for ANA autoimmune markers. I'm currently on steroids and a medication for Ulcerative Colitis, and they help. I have stopped losing weight. But I don't have a diagnosis! I'm frustrated and don't know my next option but I'm glad to hear I'm not alone.

    1. Let me know where you are now!

      1. Amy are you still available on this forum? I would really like to interact with you. My email is Dixzeland@hotmail.com. My name is Dixie and I too have IBS now for 11 years with no treatment. Thank you

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