Mast Cell Activation Disorder

[Mother of Jibril]

Hi everyone,

The last time I was here (about six months ago) I was struggling to figure out some ongoing health problems... abdominal pain, nausea, diarrhea, joint pain, headaches, chronically dry eyes, episodes of anaphylaxis, a weird skin rash, etc... After extensive testing to rule out other things (I saw two allergists, four primary care doctors, a dermatologist, rheumatologist, endocrinologist, immunologist, gastroenterologist, opthamologist, and two gynecologists), my doctors and I are finally confidant that I have <drumroll please> mast cell activation disorder (MCAD):

Open Original Shared Link

The symptoms and treatment are the same as for someone who has mastocytosis (too many mast cells, which protect your body from bacteria and viruses but also cause acute allergic reactions), but my mast cells just trigger very easily. I still don't know exactly why... I'll probably never know... but in my case this appears to be a systemic (body-wide) autoimmune disorder. All kinds of things will set me off... hot showers, hot drinks, cheese, leftovers with meat, exercise... and gluten (whether in the form of celiac disease or NCGS) is a known trigger for a lot of people with mast cell disorders!

So... I feel like I made a really smart decision more than a year ago when I decided stop eating gluten Thanks to anyone who remembers me... I use the tips I learned here ALL THE TIME.

[nasalady]

Hi everyone,

The last time I was here (about six months ago) I was struggling to figure out some ongoing health problems... abdominal pain, nausea, diarrhea, joint pain, headaches, chronically dry eyes, episodes of anaphylaxis, a weird skin rash, etc... After extensive testing to rule out other things (I saw two allergists, four primary care doctors, a dermatologist, rheumatologist, endocrinologist, immunologist, gastroenterologist, opthamologist, and two gynecologists), my doctors and I are finally confidant that I have <drumroll please> mast cell activation disorder (MCAD):

Open Original Shared Link

The symptoms and treatment are the same as for someone who has mastocytosis (too many mast cells, which protect your body from bacteria and viruses but also cause acute allergic reactions), but my mast cells just trigger very easily. I still don't know exactly why... I'll probably never know... but in my case this appears to be a systemic (body-wide) autoimmune disorder. All kinds of things will set me off... hot showers, hot drinks, cheese, leftovers with meat, exercise... and gluten (whether in the form of celiac disease or NCGS) is a known trigger for a lot of people with mast cell disorders!

So... I feel like I made a really smart decision more than a year ago when I decided stop eating gluten Thanks to anyone who remembers me... I use the tips I learned here ALL THE TIME.

Hi MOJ.....I remember you!

I'm not happy to hear about your diagnosis, of course, but I'm so glad that you've found your answer!

I know how frustrating it can be to float in diagnostic limbo....kudos to you for your perseverance!

Take care,

JoAnn

[Mother of Jibril]

I know how frustrating it can be to float in diagnostic limbo....kudos to you for your perseverance!

Thanks JoAnn I remember you too! Although it stinks to have another autoimmune disorder (as you know all too well)... especially one that affects so many different systems in the body... it's very nice to have it identified and be able to treat the symptoms. No more feeling like I'm crazy!

[Gypsy Princessa]

Hi, I've been diagnosed with Systemic Mastocytosis/Mast Cell Disease too, and while I tested negative for IgE mediated Gluten, my Immunologist and I have managed, very recently, to realize that gluten is one of my worst "triggers" (along with soooooooooo many unknowns, and a massive list of 'knowns'.), so I TOTALLY know where you're coming from. Gluten definitely does a number on my digestive system and joints, but we've discovered that consuming gluten & then running into or eating another 'trigger' seems to be sort of 'cumulative'...so if I eat gluten, for example, I get the sorts of things that you described, but THEN if I run into, say, dust or touch a banana, after eating gluten, I can find myself in anaphylaxis. That sort of thing. Diagnosis is a heck of a journey. Having suffered over 26 anaphylactic reactions last year, and 19 so far this year (that's a whole lot of Epi pens...over 40 of my own last year, plus paramedics and hospital administered...) the anaphylactic end of it is pretty grim. I've been resuscitated once too. The day to day living with it, like Gluten allergy/intolerance too, can be challenging. I'm REALLY glad that you know what you're dealing with.

If I may ask, did you have elevated tryptase? Are you on any medications to help with the MCAD/Masto? I'll probably run into you on Masto/MCAD forums. Like this wonderful Gluten forum, it's important that we share our resources, information and encourage each other. Really glad to have found this forum. YAH!

I'm starting to learn more about Gluten allergies...and my oldest daughter is showing signs of having it. Is there a genetic link?

K...since I'm new here, I'll be needing to go see what else is on here. Glad to see this forum. Thank you!

[Gypsy Princessa]

Sorry, I didn't mean to just use the words "Gluten Allergy/Intolerance". I was thinking "Celiac" too....because we know it's not just about 'allergies'...autoimmune diseases/disorders are challenging. I know you all know this....ergo we're all here. I'm still learning all the lingo. So, oops!

[Mother of Jibril]

Hi Gypsy,

Yes, I've run into quite a few people on the SM/MCAD/IA boards who are either sensitive to gluten or have celiac disease. And YES... the triggers are cumulative! My last attack (which left me vomiting uncontrollably for four hours) happened after a meal of gluten-free macaroni and cheese, bananas, and a bottle of pomegranate juice followed by a huge cup of hot chocolate... yikes! The histamine and heat were too much for my system... and this happened even while taking my normal doses of Zyrtec, Claritin, and Zantac. Thankfully, I haven't been to the ER since April, but I am using a lot of liquid Benadryl... I'm going to give Gastrocrom a try within the next couple of weeks.

I'm one of those people who has really normal tests... normal baseline tryptase, normal urinary histamine, normal complement levels, normal CBC... which has left a lot of doctors scratching their heads. It took six months for one of them to figure out that my immune system is making antibodies to my own mast cells. I wasn't going to give up without an explanation for the anaphylaxis! It's not like you can "fake" or exaggerate that kind of symptom. I'm sorry to hear that you've been to the ER so many times. Have you thought about going somewhere like the Mayo Clinic or Brigham and Women's hospital in Boston?

As to the genetic link... gluten sensitivity has a strong genetic link. Both of my kids are sensitive, although not to the same degree that I am. I have them on a "gluten light" diet. True systemic mastocytosis (too many mast cells) is not genetically linked, but other mast cell disorders can be. One of the most common is chronic urticaria, which is autoimmune about 50% of the time.

This is a good forum if you're looking for one: Open Original Shared Link

[celidoc]

Hi everyone,

The last time I was here (about six months ago) I was struggling to figure out some ongoing health problems... abdominal pain, nausea, diarrhea, joint pain, headaches, chronically dry eyes, episodes of anaphylaxis, a weird skin rash, etc... After extensive testing to rule out other things (I saw two allergists, four primary care doctors, a dermatologist, rheumatologist, endocrinologist, immunologist, gastroenterologist, opthamologist, and two gynecologists), my doctors and I are finally confidant that I have <drumroll please> mast cell activation disorder (MCAD):

Open Original Shared Link

The symptoms and treatment are the same as for someone who has mastocytosis (too many mast cells, which protect your body from bacteria and viruses but also cause acute allergic reactions), but my mast cells just trigger very easily. I still don't know exactly why... I'll probably never know... but in my case this appears to be a systemic (body-wide) autoimmune disorder. All kinds of things will set me off... hot showers, hot drinks, cheese, leftovers with meat, exercise... and gluten (whether in the form of celiac disease or NCGS) is a known trigger for a lot of people with mast cell disorders!

So... I feel like I made a really smart decision more than a year ago when I decided stop eating gluten Thanks to anyone who remembers me... I use the tips I learned here ALL THE TIME.

Hi I was wondering how many of your MCAD symptoms got better with stopping Gluten, Celidoc

[mslee]

Hi Guys!

I don't know if you remember me, but I haven't been around for a while either...but I have a bunch of autoimmune stuff going on too.

I posted about Lupus, I have been wanting to get back to you but had an insurance mix up & still waiting to see new Rheumy to get another opinion about lupus & celiac. See him in a little over a week...finally!

Mother I'm glad they finally put a name to your condition, sounds interesting...sorry it's been no fun. Will look into it more, had never heard of it until you brought it up.

Anyone ever hear of Oral Allergy Syndrome? I'm wondering if I'm dealing with that as well. Seems everything I eat makes me sick in some way or another.

Glad to hear your ok & have a dx, will be in touch...

have a good one!