I'm new here and newly diagnosed with ME.

I have a  long history of digestive issues going back at least 15 years, but I've definitely gotten much worse over the past 4-5 years.

I have had recurring "attacks" of severe cramping and diarrhea followed by long episodes of constipation. Painful bloating, belching, and heartburn are a part of my daily life. Nausea, intense stomach rumbling, extreme fatigue, joint pain, muscle pain/weakness, and bladder symptoms that mimic Interstitial Cystitis (had testing that was negative for that) are also frequent. I've also had frequent hives, skin rashes, and itching. And brain fog. Almost forgot that one.

I've been to several gastroenterologists. One treated me for IBS and was ineffective.  After she failed to help me, I figured I was on my own and had to live with this and tried to for several years, but I got so much worse that I had to leave my job, so decided to try a new "progressive" GI doc in town. He treated me for a year with mostly antibiotics for SIBO. I did improve while on Xifaxin (even the brain fog lifted), but the symptoms always came back after completing the course of meds.

During this time, I took 5 or more separate courses of antibiotics for SIBO, meds to reduce bile (made me horribly ill), proton pump inhibitors, carafate, fiber supplements, Miralax, antispasmodics, and probiotics (because he was "progressive"). He finally did an EGD and the path report showed villous blunting, but testing for celiac was negative (including genetic testing). I also tested negative for h pylori.

When I realized that he didn't know what else to do for me, I decided to treat this naturally and so began to research and consult with natural wellness professionals. During this time I tried ox bile, Betaine HCL, antiparasitics, numerous natural antimicrobials, DGL, natural laxatives, lots more probiotics, several leaky gut type diets, and several more supplements I can't remember (brain fog).

None of the above helped, either. In fact, I continued to get worse. The elimination diets removed many foods from my list and-despite the fact that these diets didn't help me-I am unable to resume eating the foods that had been eliminated. I now  consume about 6 different foods but even then my digestive symptoms can be intense some days and less so on other days.

My weight kept dropping until I had very little body fat  left and not much muscle mass, either and I was so weak that I spent most of my days lying down. I've been pretty much confined to my home for months.

By way of a casual conversation, I stumbled upon a doctor who was finally able to diagnose me. I had another EGD and colonoscopy done and excess mast cells were found throughout my digestive tract-as well as chronic inflammation and areas of erosion.

I started gastrocrom yesterday and, so far I've only had a slight increase in belching and bloating, but it's hard to know if that's the med or just the disease. I'm starting low and building up slowly with lots of water for each dose.

Now that I know this is mast cell mediated, the unpredictability of my symptom flares make sense. I could never find a pattern, because I was only looking at diet. I couldn't understand why going out one day would make my gut so much worse for days after, or why being cold makes it worse. I also flare from inhalation of chemicals (scented laundry products, lawn fertilizers, etc), exposure to sick people, exercise, stress, and who knows what else.

I'm just really glad to have gotten a diagnosis that finally makes sense. And I'm happy to have found this place and am looking forward to learning and healing along with all of you.

Your story sounds very familiar - and much like mine! Do you mind me asking who your doctor is?

I too tried Gastrocrom, and while it helped somewhat I could never get to the full prescription dose. My doc, Dr. Philip Miner, suggested Ketotifen which has been a HUGE help!  

I hope that you continue to get better.

Nicole

Hi Hope,

Welcome!

My doctor, Scot Lewey in Colorado Springs, recommends ketotifen as his first choice mast cell stabilizer, too.  His regimen also includes probiotics (VSL #3 is his favorite), and H2 antihistamines.  

I take gastrocrom, H1 and H2 antihistamines, probiotics (PB8), 500 mg. l-glutamine, twice a day, follow a low histamine diet, and use bromelain as a digestive enzyme (not recommended if you have a lot of inflammation and irritation in the GI).  These meds keep me stable enough that I can even cheat a little on my diet and not create havoc.  I sometimes still have episodes that are baffling as to the cause.

One of Dr. Lewey's suggestions was to use Lomotil to help stop the cramping and sudden emergencies to find a bathroom.  He recommended pre-medicating with it before long trips.  I haven't tried it yet, but plan to.  He said his ME patients tolerate it well.

My GI problems became chronic after an infection with a parasite, and my colonoscopy showed too many mast cells.  Now I'd say they recur, but aren't always an issue.

Thank you for the welcome.

I had no idea that Dr Miner was an expert in this. We really did just stumble upon him. We were down at OU for something else and just happened to meet a nurse who had recently left her job on the GI floor, so we asked her if she knew of a doctor who specialized in IBS.

I started to realize that he's not your run-of-the-mill gastroenterologist when his office staff told me that the wait to get in to see him would be 6 months.