Hello! I just joined today, but I've been following the forum since last fall. I've already gotten a lot of useful information from reading it, and I'm excited that I can ask questions now.
I am a 49-year-old woman with multiple health problems including a 12-year history of chronic diarrhea. Since the diarrhea began in 2003, I have seen 9 gastroenterologists and had many colonoscopies, endoscopies, blood, stool and breath tests. Except for an esophageal GIST (gastrointestinal stromal cell tumor), which was removed in 2006 with no recurrence, the results were otherwise mostly normal except for occasional reflux esophagitis and regions of villous atrophy and edema in my small intestine. 2009 pH impedance and manometry showed markedly impaired esophageal motility. One blood test showed positive antibodies to CBir1, an antibody that has a high association with inflammatory bowel disease, but there was no evidence of IBD. Fecal O&P and standard stool culture have all been negative except for a positive result for C. difficile in 2011 (3 subsequent C. diff tests were negative, with most recent test 12/2013). Other diagnoses have included IBS-D, celiac disease, fructose intolerance, and SIBO. I have followed medical advice for each condition without improvement in symptoms.
Before 2003, I had allergies to Bactrim, erythromycin, and strawberries, with contact reactions to nickel and clear plastic thread used in some clothing. Since the onset of the diarrhea, I have developed a long list of allergies and adverse reactions which are weird and sometimes very severe (I can give more information if people are curious, but I'm worried this post is too long already, so I won't give it here). I now react to whole classes of medications, medical plastics and dressings, many foods, and environmental irritants. I have been tested many times for autoantibodies, always with negative results. Two rounds of scratch tests for foods and environmental allergens were also negative.
My other health problems are mostly neurological -- I've lost most of my vision and have small fiber neuropathy and chronic pain, along with focal cognitive deficits. Trying to treat the chronic pain with opioids in 2005 kicked off my first major urticaria flare. In early 2010, I was diagnosed with neuroborreliosis (CNS Lyme disease) -- a combination of clinical presentation and positive IgG and IgM antibodies.
In each of the past five years, I have had a serious flare of my ongoing diarrhea lasting for several months. With each flare, I also have bone and joint pain, cognitive problems, severe fatigue, and significant weight loss. My most recent flare began on October 3, 2013. This time, the diarrhea was preceded by a series of histamine-like responses to food. My notes from that time describe metallic taste, tight throat, coughing/wheezing, reflux, itching, nausea, anxiety, dizziness, and drop in blood pressure. Foods that were formerly “safe” to eat were no longer safe; in fact, I couldn't seem to find any foods that didn't make me sick. The reflux got bad enough to affect my voice. I started getting patches of hives; a place on my neck that itches almost all the time became darker than the rest of my skin, and I developed several other “trigger patches” that, if I scratch them unthinkingly, set off bad itching elsewhere. I was able to get an old Singulair prescription renewed at the end of October, and that helped to reduce the symptoms a little bit. When I mentioned the new symptoms to a friend in my chronic illness support group, she asked me if I had ever been tested for mastocytosis. I hadn't, so I did a literature search and started reading. That was when I found this forum.
In February, I went to see my gastroenterologist. I told him about the new symptoms, and asked for a re-evaluation. He had previously mentioned the idea of testing me for mastocytosis or pancreatic insufficiency, but it had never happened, so I asked if he would still be willing to do those tests. He ordered a test panel including serum tryptase and fecal pancreatic elastase, and suggested that I try an OTC antacid or antihistamine to help with my reflux. I started Zantac 75 mg on February 20, 2014, increasing the dose every few days until I was taking 150 mg twice a day. This helped quite a bit. The wheezing and hives stopped. However, I am still having problems with reflux and itching, and I am still having multiple bouts of diarrhea every day. I sometimes have night-time attacks of diarrhea, preceded by increased histamine symptoms not relieved by my current dose of Zantac.
At my March follow-up, we reviewed my test results. My serum tryptase result was 3 ng/mL (ref range 2-10 ng/mL). My gastroenterologist was reluctant to proceed without advice from a specialist, so I gave him contact information for Drs. Philip Miner, Norton Greenberger, and Lawrence Afrin. In early April, I wrote to Dr. Afrin to ask if he would be willing to see me. He wrote back to me the same evening. He said "Your symptom list easily makes mast cell disease a reasonable diagnostic consideration, and you are correct that mast cell activation syndrome (MCAS) or mastocytic enterocolitis are more likely diagnoses in your case than systemic mastocytosis." He told me that, while he would not be accepting new patients until sometime later this year, he was willing to advise my local physician on how best to pursue a diagnosis of MCAS or mastocytic enterocolitis, try to answer any questions he might have about mast cell diseases, and provide him with a list of references. I forwarded Dr. Afrin's response to my gastroenterologist. Unfortunately, at my next appointment, he told me that he could no longer care for me.
I wasn't able to find anything on this forum about Dr. Greenberger, so in early May I wrote to Dr. Hamilton after first calling Brigham & Women's to see if he accepted self-referrals (he does). The scheduler suggested that I make an appointment and then send him my records along with a "please advise" letter, so that's what I did. I'd seen from his contact page that he went to school in Baltimore, where I live, so I asked him if he could suggest any local doctors. He just called me on Friday. All I can say is, these mast cell specialists sure are nice! He agreed with Dr. Afrin that my symptom list makes me a good candidate for MCAS. He said that my good results with Singulair and Zantac also point in that direction. He knows gastroenterologists and allergy/immunology folks in Baltimore (his brother is a gastro at Hopkins, and he collaborates with some of the a/i people there), so he wants to see if he can get me tested locally to save me the trip, and get me set up with someone who will help with trials of Gastrocrom and other antihistamines. He offered to help facilitate this. I told him that I was nervous about going back to Hopkins -- I haven't had good experiences there -- and he said he thinks I just haven't seen the right doctors. I hope he's right. It would without question be easier for me to see local docs. He said he'd be glad to see me in Boston, too, so I know that is still an option if Hopkins doesn't work out.
I've seen that there are a few other members in this area. If anyone has found a good local primary care doc, a/i person, or gastroenterologist who is willing to work with MCAS patients, I'd love to have that information.
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