Understanding Mast Cell Activation Disorders

NIAID research is improving understanding of mast cell activation disorders, which can cause a constellation of symptoms, ranging from skin rashes to depression.

[justbambitious]

I also have Eds mcas and pots Ive been having problems so long and I was ignored I really hope they educate doctors so we can start earlier management to help us live with less pain!

[mraokmelle]

Omg this is EXACTLY WHAT IM GOING THROUGH! I've been going through this since I was 7 years old and it's only gotten worse I'm 25 now.

[MelissaPruitt-ou]

Well this is exactly what I’m
Going through also. Was sent to er two days ago with a mass cell flare! Finally dr’s Need to realize that this is not just allergies!!! I had a skin scratch test and was allergic to the SALINE! The negative that should have no reaction! I’m so glad these dr’s are looking into this ! I feel like I’m educating my own family dr of this, as he is not even educated much on this

[cherrylane]

Check out also for low dopamine in the brain. If you are a Highly Sensitive Person, you already have lower dopamine than others. Where there is low dopamine, there's more activation in mast cells. Treated with dopamine agonist (if you have low dopamine), antihistamines (H1, H2), vitamin D, (a small amount) injection of adrenaline under the skin of your belly. Occasional cortisone. Some also benefit from IV saline infusion, MCAS comes with dysautonomia. (You can also have EDS, if hypermobility is present)

[IAMAMARTIAN]

I have systematic mastocytosis I take sodium cromolyn and mix it with water, lots of zertec (generic works too) and montelkaust to help with breathing and head pains. Try getting your doctors to do blood test, bone density test, bone marrow test, and a 48 hour urine test. After that you should know if you have a mast cell disorder. Stay strong guys we will be ok 😊

[lilruca]

The hypermobility issue will pretty much solidify that you have Ehlers Danlos Syndrome. EDS is a collagen disorder, mast cells make up the extracellular matrix which is a bunch of collagen. Basic science says cells make up tissue which makes up organs, etc etc. So of course a connective tissue disorder will have connective tissue cells act up. So many people with Ehlers Danlos Syndrome are struggling to cope with all these symptoms because doctors keep recategorizing syndromes and disorders that tell the same story! I shouldn't have to spend money and time to go back and forth with doctors to find out I have EDS pots and mcads because some doctors think by diagnosing you with EDS it goes without saying you have pots and mcads, and other doctors think you have to be individually diagnosed. And then all the doctors argue over what to call your condition.

[Loveandkindness]

I was diagnosed with hEDS (Hypermobile Ehlers-Danlos Syndrome). With this rare genetic disorder: 1 out of every 15 people that have hEDS, also develop Cranialcervical Instability (CCI). Those that have CCI and hEDS, unfortunately always also have MCAS. I also have POTS which is very common. I used to have Idiopathic Intercranial Hypertension, another common comorbidity, but it has since been resolved suddenly and unexpectedly on 10/4/2019. (Thanks God!)

I also have been diagnosed with MCAS and am in the process of changing my own diet. I’ve been sick since I was a kid and getting worse. (I’m a 37 year old woman now). Not the only one in my family that can, “write on their own skin” either!😏 (Another tell-tell sign of MCAS).

I live in a permanent neck collar these days. But, the collar is absolutely essential and became *the* diagnostic tool, (for me anyway), that absolutely proved my diagnosis of CCI and hEDS. I can breathe better, eat better and sleep better. I’m in far less pain and discomfort. I don’t mind the collar now, it’s part of me. I feel much better wearing and sleeping with it on than without.

I’m starting low dose naltrexone, Benadryl twice a day and aggressive PT to strengthen my neck and back muscles. I’m hopeful to have even more and improved less pain, increased energy and problems in general moving forward. (LDN is known to improve inflammation and help your immune system fight back).

God bless and I wish you all the best in your pursuit to find answers.

[Successu]

I have this syndrome and have been using quercetin twice a day for this past 3 months and can now eat foods that I cut out of my diet. Recently I did have a histamine attack and it lasted for a few days. The rage that comes up in me makes me so miserable that I can’t be around people. Oh ya I am 68 going on 16 and I have now increased to 3 per day.

[Slowleek]

My family has MCAD and Ehlers Danlos Syndrome. The joint problems they describe sound like EDS

[maryclairekalamafoni]

I have mast cell activation syndrome. Diagnosed at age sixty! Î have almost every disease in the book that goes with it, asthma, allergies, ehlers danlos, dercums, chiari, chronic drippy/stuffy nose (even with meds), all over itchiness, dishydrotic eczema (not dishydrosis), myofascial pain syndrome, all of the neurological ones I've read, plus more that I can't remember just now. Get it?! Neuro includes memory?! Never mind. But there really are things I read that I recognised and can't recall !! Because I have migraines and chronic kidney disease and polymyalgia rheumatica and giant cell arteritis and fat liver (I wouldn't want to be called fatty, but just fat, so that's how my liver will have it) and those aren't a part of all this, I don't think, I do think I have a lot to learn. Seems I never stop saying that!

[rhondaannjackson]

Hows everyone doing.I have MAST CELL ACTIVATION SYNDROME. I have had everything. It sucks it has really consumed me.Its hard tl plan anything because im sick all the time.Its killed my marriage. You know how i feel, to all my people with this disease.

[Hemlock]

They should test for lyme disease too. Sometimes this can cause excessive mast cells and high histamine levels.

[colleenpisaneschi]

Excellent to know they're working on it, and we finally have validation.

[verawaters]

Sounds like the family with the joint issues and inherited MCAS have Ehlers-Danlos.

[DeniseTG]

Well with approx 30-50% now experiencing this as long haulers IT IS TIME TO REALIZE MUCH MORE COMMON AND TEACH MANAGEMENT BROADLY TO PROVIDERS!

[ajs]

I wish I could find a doctor to diagnose me after all of these yrs of similar issues. I suffer with hand & feet redness/heat/swelling everyday after I eat and I get severe asthma attacks. My doctor has tested my blood for nearly everything but the results keep coming back within normal ranges. I have terrible IBS and skin rashes on my arms/neck/legs too. I was diagnosed with severe food allergies but avoidance diets haven't helped reduce my symptoms. Since I started experiencing these issues, I went from 138lbs down to 107lbs from not being able to eat in the past couple of years. My doctor finally told me last week that he is out of options and that these symptoms are probably just anxiety/stress related. I find it hard to believe that these physical food-related symptoms are just manifested in my head all these years. I was adopted from South Korea, so I don't have any knowledge of my own family medical history. It has become a living nightmare, but I am hopeful that this may be something similar to what I am experiencing.

[jakewillson]

I was diagnosed with mass cell activation disorder last month, I’m receiving treatment and I’m finally starting to feel better, the internal and external hives are awful, I’ve had hives the size of baseballs in diameter all over my body, I have no family history of this illness either

[tlux.]

I'm going through the same thing ... My grandmother had it too.. I can't stay in the sun heat that long neither can I stay in the cold

[MBrusaZappellini]

I have MCAS but not EDsyndrome...it’s taken 20 years (after having a ruptured appendix and peritonitis in ‘98) to get CLOSE to a diagnosis....thankful for my RNP who looked at my blotchy purple legs and heard my complaints of burning sensations with extreme fatigue...SHE figured out that it was MAST cell related and she put me on Montelukast, and within 2 days my never ending rash/hives (that I had been living with for months at a time) 2 days...and it disappeared completely! I have since stared a more complex protocol, which has been helpful...but...I’m still finding weird and painful symptoms.
Like most people with rare/complex health issues I’m desperate to feel better- I can barely function and I have almost zero energy to devote to anything but the basics. A formerly super ambitious hardworking artist, it’s becoming rare for me to even have energy to create.
I’m eager to hear if anyone knows of any clinic or Drs who treat MCAS in the US or (my husband’s country) Italy... TIA

[stacycochran]

Got some lab results in. My ANA and my DNA single strand both was positive. My inflammation marker was off too. My doctor is sending me to a specialist to find out what autoimmune disorder it is, if it is one. I have almost every symptom of Mast Cell. It’s so hard trying to find out why I feel bad 😞 My tryptase came back as 10.8 so I didn’t know if that’s good or bad? I never had allergies until a few years ago. I can’t hardly go outside without welping up, having a rash or something. Asma has also occurred, stomach issues, anxiety, bone pain. Some doctors in the past said everything looked good until now. My stomach doctor mentioned Mast Cell and it really makes sense with all my symptoms.