Posted 11/4/2013 6:30 AM (GMT -7)
I trace my illness to some type of gut infection, being laid out on the sofa for 10 days with severe nausea, unable to keep anything down. No one else in the family got sick. After that, major digestive problems in the upper GI, poor digestion, GERD, esophageal swelling, etc. That lasted 2 years, then I gradually began to heal BUT fatigue was horrific (perhaps to due inability to eat, vitamin and mineral deficiencies?).
Next thing was nerve damage in my feet -- really nasty case of unknown origin.
Later, CFS one whole winter, lived on Tylenol, thought I just couldn't recover from some type of virus.
Fast forward 12 years ... another 10 day presumed gut infection with major diarrhea, lost 10 pounds in 10 days. Then the muscle spasms and cognitive neuro issues began, symptoms gradually accumulated, poor sleep, migraine, then joint pain ... then about 6 months later yet another episode of gut pain, diarrhea all over again. This time it did not resolve and I subsequently realized I could no longer digest gluten, then yeast, and now 12 years later I have identified high histamine foods (which particularly means yeast and anything with yeast, cultured, fermented, etc although there are a few others not in this class) as a huge trigger to pain, inflammation, congestion, fatigue, etc.
Namian, Your symptoms are exactly like mine though I would have to add to that list considerably as well.
I think whatever happened to my gut, the biome was changed permanently. Previous to this, I had a rare UTI and was prescribed Cipro. I'll never know if this contributed, but if it didn't, the infection itself surely must have changed gut biome.
Also, my understanding is that with only skin involvement in children, mastocytosis is usually "outgrown." But not always. Some children do go on to systemic mastocytosis, from what I've read. It would be worth pursuing a diagnosis because mastocytosis can be very serious. There are several types, the worst being mast cell leukemia. I wouldn't want you to miss something serious. The low histamine diet I posted was from the Mastocytosis Society, so yes, diet can help that. Sometimes medications are also needed, depends on how severe the problem is. Triggers for mast cell release are not only food but weather, stress, activity, bug bites or stings, surgery, medications, the list is different for each person. (Hmmm, sounds kind of like what triggers fibromyalgia symptoms, too!)
Thank you to everyone who posted and shared! I was feeling discouraged this past weekend, but I know now that there are many of us who would discuss dietary information intelligently and non-divisively if given the freedom to do so.
I'm holding out for the fecal transplant if they ever offer it to Fibromites with "co-morbid conditions", which purportedly will make taking probiotics a thing of the past.
Fecal bacteria is the new frontier. :)