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danmlee (@danmlee)

Mast Cell Activation

Blood Cancers & Disorders | Last Active: 3 days ago | Replies (108)

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@jbhmaine

I have had serious abdominal pain since childhood, urticarias, cough problems, and other symptoms that match the new international criteria for MCAS. I had to do my own online research to basically self-diagnosis. Over a life-time I have received about a half dozen or more misdiagnoses, including childhood abdominal pain so severe I fainted and had my appendix taken out only to learn it was normal. I had dozens of x-rays of abdomen, and nothing could be found, all negative so lived for another twenty plus years with diagnosis and treatment for a duodenal ulcer, though that never appeared in any x-ray. Then I got diagnosis of IBS, which seems to be correct but researchers now know that IBS and MCAS often are comorbid syndromes. I’ve been prescribed various medications for IBS none of which did much. Finally a gastroenterologist tested me a new diagnosis Small Intestine Bacterial Overgrowth (SIBO) which came back positive. That explained the IBS symptoms. The gastroenterologist recommended a Xifaxin trial. It is a very expensive drug with no evidence of effectiveness as far as I could find any studies. So I use probiotics and Ultimate Meal green food for every breakfast, and this helps the IBS symptoms. But not the MCAS symptoms. At least I got four boxes of free samples of Xifaxin, which I can use for international travel if I get traveler’s ‘revenge’. For the newly emerging chronic cough problem I went to an ENT and allergist and all tests came back negative. Four different doctors and specialists could not figure out a diagnosis. A couple years ago I managed to convince my Medicare family practice doc to get me one of the genetic tests for mastocytosis. (My grandfather died of what my father reported was an ‘odd’ form of leukemia; my guess is it was mastocytosis leukemia.) That came back negative. But that test is not one for MCAS. There seems to be no good test yet available for MCAS. Finally last summer when I was in Canada my allergy-like symptoms got much worse, the cough kept me from going public. I went to the local drop-in family health clinic, and the doctor suggested, as I described my symptoms and research findings that I do two trials – a powdered inhaler and if that failed, a generic of Singulair. The inhaler only caused my chronic cough to get extremely worse. The Singulair reduced the cough symptom about 60% in a few days. I read a 2014 medical research article on MCAS symptoms and positive response to an antileukotriene is now one of the diagnostic criteria for MCAS. I take a low dose daily and it has seemed to continue to help. Osteopathic neck manipulation has also helped with chronic cough reduction, as there seems to also be a structural problem in part may be due to my mild scoliosis.

Here is my own short summary of diagnostic criteria based on my reading of medical research articles, Akin, Valent and Metcalf (2010) revised with Petra et al (2014):
Table II. Criteria for the diagnosis of mast cell activation syndrome (MCAS).
Idiopathic MCAS.
After primary and secondary rule out: no detectable clonal MC, no reactive disease, and no allergen-specific IgE Episodic symptoms consistent with mast cell mediator release affecting two or more organ systems evidenced as follows:
• Skin: flushing, urticaria pigmentosa, pruritus (itching), angioedema, dermatographism; rashes, hives
• Respiratory: wheezing, sore throat, stridor; [cough]
[Idiopathic anaphylaxis, with urticaria (during anaphylaxis, unlike SM) and high IgE.]
• Cardiovascular: chest pain, hypotensive syncope or near syncope, tachycardia
• Gastrointestinal: abdominal pain (cramping, bloating), nausea, vomiting, diarrhea, malabsorption, esophagitis; gastroesophageal reflux
• Naso-ocular: pruritus, nasal stuffiness; conjunctival injection
• Neurologic: headache, memory and concentration difficulties/brain fog, paresthesia, peripheral neuropathy
• Musculoskeletal bone/muscle pain, degenerative disc disease, osteoporosis/osteopenia
• Systemic: anaphylaxis, fatigue, faintness
Documentation of an increase of a validated urinary or serum marker for MC activation: esp. increased tryptase
Response to anti-mediator therapy (decr in frequency or severity or resolution of symptoms: e.g., H1, H2, antileukotriene meds

I have or have had 15 of these symptoms. Response to the antileukotriene seems fairly definitive to me.
Wishing everyone in this thread best of luck in getting good diagnosis and finding optimal medication and diet.

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Replies to "I have had serious abdominal pain since childhood, urticarias, cough problems, and other symptoms that match..."

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

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?