← Return to Mast Cell Activation
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Replies to "I have had serious abdominal pain since childhood, urticarias, cough problems, and other symptoms that match..."
Thank you for posting that. I have a bunch of auto-immune disorders already (Type 1 Diabetes-on insulin pump; Celiac Disease, Necrobiosis Lipoidica Diabeticorum, Hypothyroidism, Reynaud's Sundrome, and SICCA Syndrome) and recently and more frequently I am having episodes of what an allergist believes is Mast Cell Activation Syndrome. I wake up at night between 3 and 5 am violently ill. I am awakened from sleep with gas pain and nausea; I start sweating and ?flushing I guess? I have vomiting or diarrhea or both, terrible abdominal pain; fainting or inability to keep my head up and eyes seeing what's in front of me; and then shaking/my whole body shakes for several hours. Some bouts are not this bad and I take Zofran and Ativan and extra antihistamines and gas X and eventually stop shaking and go back to bed. These episodes are life threatening because of my diabetes and if my blood sugar drops while I am in an episode there is nothing I can do if vomiting. I have to take my pump off sometimes. I seem better on Ranitidine and Zyrtec and Ativan and Zofran, but a lot of nights I am fearful of getting sick and very often wake up nauseous and sweating, only to then take the Zofran and Ativan and return to sleep. I feel crazy, like this is all in my head, because they happen MORE when I am stressed (traveling for work and at a hotel by myself/or when my husband is away/or when I am in a hospital for another reason entirely/or I just climbed a mountain and there is no medical care nearby) but these bouts of illness wake me from sleep so I can't be thinking my way into these, as I am truly sleeping until I wake up ill. I have chest pain sometimes, a vague heavy feeling in the center of my chest, I have irregular heart beats all the time, my memory is terrible and often I can't complete my sentences, I have a chronic cough, I have osteopenia from malabsorption d/t undiagnosed celiac for 30 years (I am now Gluten free and low carb all the time); I sometimes cannot swallow or I choke, even on my own saliva; I have intermittent chronic bladder pain.I am light-headed at work often and sometimes have fainted. I see specialists for everything (Diabetes, Celiac etc) but I don't have anyone who knows what else to do to help me with MAST CELL. I live in MA and can get to Boston but the specialist at Brigham and Womens will NOT schedule me and will NOT EVER CALL ME BACK. I have been trying for months to get an apt with SOMEONE who understand MAst Cell and can help me. Would MAYO CLINIC be a good idea? I have SO much wrong and I am not feeling well. I work full time and then some, and I have a family, and I am unbelievably fatigued all the time. I feel like I need to learn so much more but I cannot find the time or energy. I had negative SIBO and negative Tryptase but an elevated Chromogranin a level, and my Gastroenterologist said we would recheck that in a year, but could be a sign or a neuroendocrine tumor. I also read it could indicate Mast Cell Activation Syndrome. I am taking a bunch of supplements for digestion (enzymes and Diamine Oxidase and sporebiotics) and that seems to help with eating a meal. I mostly avoid meals and eat snacks all the time because I am at the point where I HATE eating. Foods can bother me one day and not the next. I can't do gluten, and I am allergic to Vanilla and to Kidney Beans, and I have food sensitivities that also seem to come and go. The allergist said I will build up antibodies to anything I eat. I tested sensitive to Mackeral but I've never eaten mackerel in my entire life. I start thinking no one know what they are talking about. I read that tryptase levels are a marker but unless in an acute episode then its not that useful for diagnosis. What about the Chromogranin a level? Does anyone have advice for me? I think of myself as strong and resilient but part of me thinks I am dying of something. I can't continue like this. My PCP is useless; has never even spoken to my endocrinologist. No one communicates with any other providers. I'm so frustrated and so tired of all of it. Looking for advice, support, some reassurance? I have a nutritionist and am working with her on antihistamine diet, but I'm already a clean eater and I just stopped eating leftovers. Help?
Have u tried a low histmaine diet it is the only thibg that makes a big differenace for me. I have anaphylactic shocks if i dont take medication and eat strictlu