Skip to content
Ad

Mastocytosis and Mast Cell Disorders

All discussions in this group

Next
  • Is it possible to have MCAS and autoimmune disease

    I'm so lost... my allergist thinks I have mast cell activation syndrome and my rheumatologist thinks it's just my lupus.... I also get thorat swelling and anaphlatic reactions from foods and sents... rheumatologist told me that's just a allergy. I also told him I have hasimotto and celiac...

    Last reply
  • MCAS and Hydrocortison intolerance

    Hello, This is my first post here and I like to thank everyone for reading and repliing I have CFS/MCS MCAD/Mcas and Mitochondria problems. So a bunch of things. Due to all this stress my Adrenals became risky weak. Now I´m in a very severe state and overwhelmed, because: I´ve got a recipe...

    Posted
  • My last ditch attempt in trying to live...please help

    Someone please help me Ive tried so hard to deal with these medical problems that it has led me here in a last ditch effort for help. Im going to be completely honest in hope that someone in the community can save me. Im on the verge of possibly commiting suicide because I can no longer see the light...

    Last reply
  • Paediatric mastocytosis

    My one year has just been diagnosed with sm. We live in Ireland where there is no specialist in the area. We would like to have her seen by a paediatric specialist in the UK. Does anyone know of an centres that specialise in sm in children where she can get treatment?

    Last reply
  • Difficulty with doctors taking you seriously?

    Hi everyone. I'm new here. I have not received a formal diagnosis yet, but am in the testing process. It's a little unnerving because I have virtually all the symptoms and signs. The "allergy attacks" started on 6/28. I had a ten day span where I had anaphylactic reactions scout...

    Last reply
  • Mast cell disorders and tattoos

    I don't have a formal diagnosis yet however I do know I have some form of mast cell issue. I was wondering if it is safe to get a tattoo and if there are any special precautions I need to take?

    Last reply
  • Just told mast cell disease now what to expect

    I have been searching for answers for over 2 years and was just told from blood and urine work up that this with symptoms looks like mast cell. I was put on zertec and zantec and suppose to go back in 6 months. I had severe flushing and hives on face and neck and heart racing, anxiety feeling all over...

    Last reply
  • nm3 nm3

    Mast Cell Issues??? Please help...

    Ok, I'm needing some advice here. This issue all started about 5 years ago, in 2012. I started to feel cold, almost feverish, but no temp. I broke out in a rash on my arms, chest, groin, legs...etc. I felt run down all the time, dizziness after eating. Fast forward to today, I take a load of supplements...

    Last reply
  • Could I have Mast Cell Activation Syndrome?

    I'll try make this as short as possible. I'm a 21 year old female with Ehlers Danlos Syndrome and POTS. Over the past 2/3 years I've had 4 bouts of GI related problems (vomiting, severe diarrhoea, cramps etc) but they've never been caused by infection, food poisoning or a gastric flu....

    Last reply
  • Anti depressant / anti anxiety

    I have an over production of mast cell in my stomach and high esenophil count in my esophagus . I need to be on an antidepressant / anxiety pill. Every one I try sets off my mast cell. Any suggestions of ones that have worked for you ? I am on gastrochrome and Allegra for my mast cell condition

    Last reply
  • Question about Ketotifen

    Has anyone taken ketotifen for mast cell in the gut? I have been prescribed this to hopefully replace my gastrochrome. Any side effects ? Did it help with the mast cell activation ?

    Last reply
  • Xolair

    I am new to this group but have been diagnosed with MACS for over 12 years. I have done well on high dose steroids until June of this year. I went to the MAYO Clinic in in October. I spent 10 days in the hospital there, and after 7 weeks came home to start Xolair and wean off the steroids. I was...

    Last reply
  • GI ATTACKS from Mastocytosis

    Does anyone else experience the piercing, cramping abdominal pain, nausea & diarrhea when degranulation occurs? It hits me so fast, I must carefully, but speedily get the the restroom! My lower back spasms while my GI track empties, leaving me extremely fatigued & deep aching bone pain in my...

    Last reply
  • Mastocytosis?

    Hello everyone, I'm currently undergoing tests having passed the worst winter ever with reactions to wood smoke, pollution etc (I tested positive for allergies) and with GI problems worsening by the day. I already have pernicious anemia but that doesn't account for my strange reactions....

    Last reply
  • Is this a squamous cell carcinoma and what should be done?

    Hallo.  I have been on various other areas on this site as have had a number of problems that have been treated, so this one has gone to the 'back of the queue' for a while.  About 2-3 years ago, I developed a new brown mole on the back of my hand.  I guess I should have had it...

    Posted
  • Statins help with MCAS?

    Was curious - has anybody with MCAS had a reduction in symptoms when taking statins for high cholesterol, particularly Fluvastatin?  I ran across an article in The Journal of Immunology called "Fluvastatin induces mast cell apoptosis and autophagy..." (apoptosis: cell death)  As it...

    Last reply
  • Gardening Activate Mast Cell Activation????

    Has anyone had Activation from gardening outside? Any tips or clues on the cause? 1/2016, traveled to Mayo Clinic & diagnoised with Mast Cell Disorder, CVID, Autoimmune Urticaria..........lots of new meds H1, H2, H3 Blockers, IVIG......however, my hometown doctors ask me how to spell my conditions....

    Last reply
  • Back/muscle pain

    Hello, Ive just been told I have MCAS after my Dr discovered high histamine levels in my blood work.  I also have high mercury levels due to a seafood heavy diet. I have muscular back pain that started suddenly...there is obvious inflammation.  My Dr. believes it is being caused by MCAS.  I...

    Last reply
  • Please help with symptoms!!!

    Hi I am 44 yo I have been overweight most of life so I suffer from all sorts of aches and pains that I relate to weight and being out of shape.  Anyhow recently I have had this weird feeling on left side under ribs almost like a bubling or gurgling of stomach and I can feel it when I breathe at...

    Last reply
  • MCAS and Orthodontics (Braces)?

    Has anyone seen any correlation between orthodontics (braces) and MCAS flares? My daughter has been very sick with MCAS-like symptoms for almost 2 years now, and although she never had any "classic" nickel allergy reactions in her mouth, all her horrible system-wide symptoms started about 6...

    Posted
  • MCAS and dissolveable sutures

    Do any MCAS patients have any experience with dissolveable sutures, such as VICRYL (polyglactin 910) or PDO (Polydioxanone)?  From what I've read, these sutures are designed to stimulate the immune system to generate chemicals to dissolve them, and am wondering if the immune system of someone...

    Last reply
  • Excessive Mast Cells in Colon

    I'm 25, female and just trying to survive. I have had multiple procedures done, most recently upper and lower endoscopies. My gastroenterologist found an excessive amount of mast cells in my colon and started me on Pepcid twice a day. He said to see him in a month. I have been reading and have come...

    Last reply
  • Trying not to go crazy

    I have always tried to be a positive, happy person but having mast cell disease makes it difficult some days. The isolation and anxiety that comes with trying to manage is enough to drive me mad some days so I try to focus on hobbies like sewing, writing, gardening (when the bloody wasps aren't out...

    Last reply
  • Masto Flare up?

    Hello all, I am new to the group and am excited to have found this site. I have been clinically diagnosed with Masticytosis and I am unsure what to do right now. I have had an extreme amount of acid reflux, pain in my upper abdomen, hot flashes, flushing, upset sotmach, dizziness, extremme fatigue and...

    Last reply
  • MCAS tests

    I believe I may have MCAS in addition to ME/CFS. What is the routine procedure for testing in the UK ? Do I need a referral to a specialist, and if so, which field of medicine is most appropriate ?

    Last reply
  • Been trying to find a doctor who'll pay attention for years.

    I'm 62 and I've been ill ALL MY LIFE. Never able to sleep properly, severe constipation, urinary pain and urgency, nausea, all from infancy. I learned to live with it all, never realising that it wasn't normal until I trained as a nurse. I always had allergies, rashes, always tore myself...

    Last reply
  • mast cell activation disorder

    I was diagnosed with mast cell Activation disorder and now I think my sister and my mom have the same disorder but it's manifested in different ways my sister has heart trouble (arythmia) and anaphylaxis allergies to shrimp and other Foods I react to stress and gluten and my mom reacts to food...

    Posted
  • Question about testing for MCAS

    My doctor ordered 2, 24 hour urine tests for me to complete. One is an 11 beta prostaglandin F2 Alpha test and the other is a N-Methylhistamine test. So, my question about these tests is if I should just take them normally, or if I should eat the foods that I know that I react to since, yes...

    Last reply
  • Doctor in my area

    Does anyone know of a good doctor for mastocytosis in Texas? Preferably West Central Texas? The nearest one I've heard of is in Boston.

    Posted
  • Recently diagnosed Celiacs questions about histamine intolerance

    38 year old woman, just this past month been diagnosed with celiacs. I started doing some reading and have found some interesting information. I am wondering if anyone out there has had the same symptoms as me and if they can help. Since I was about 8, I would have these random, recurring "episodes"....

    Last reply
Next


We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.