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Posts (3)

Jan 29, 2019 · Mast Cell Activation in Blood Cancers & Disorders

No…. just taking ibuprofen… which then hurts my stomach… I should ask…

Jan 28, 2019 · Mast Cell Activation in Blood Cancers & Disorders

Hi, I am having different but similar struggles also. I have MCAS which I only recently figured out in the past year with an allergist and GI doctor. I have type 1 diabetes and celiac and some other more minor auto immune issues- hypo thyroid, Reynayds, etc. The MCAS for me is bouts of 3 or 4 am (always around this time) severe bloating nausea diarrhea vomiting, low blood pressure where I can’t keep my head up, sweating, flushing, shaking. I can’t stand these episodes. I started a low histamine diet but now with celiac there are so few things I’m able to eat between low histamine and gluten free. And I’ve been taking antihistamines but still getting these attacks, so just started Chromolyn Sodium and it’s now giving me really bad headaches. I don’t feel like my allergist knows enough about MCAS and there’s no one who can take me as a new mast cell patient. I’m having times of feeing hopeless and scared this won’t get better. I need to find someone who has figured out how to live with MCAS and how to deal w the headaches so I can take the chromolyn. I have skin symptoms too, but no breathing issues… it’s my gut and skin affected. Not sure what to do at this point. I work in a full time professional position and then do other part time work. Struggling…

Nov 9, 2018 · Mast Cell Activation in Blood Cancers & Disorders

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?