Mast Cell Activation Syndrome (Mcas)

[icelandgirl]

Glad you had a good appointment...those really can help to lift spirits.

My safest foods are chicken and all green veggies except peppers. I currently eat all meats, only fresh caught fish (hubs likes to fish - worked out well when we learned the hista nonsense), most veggies except those with high histamine or nightshades, a small amount of rice or one slice of gluten-free bread...can't do the ones with soy...per day, lots of almonds in all forms, coconut oil, salt and black pepper (recently found out black pepper was HH, but have not removed it or my red wine. the strange thing is i can drink red wine without issue which is crazy but i try not to question it. coffee, nettle tea, red wine and lots of water are my beverages. oh and recently got small quantity of egg...not sure if its because i switched to a fresh source and can eat two a day and also no problem in baked goods...i make a breadlike substance with apples, coconut and almond flours, eggs, vanilla and cinnamon...kinda tastes like an apple cinnamon muffin -- emphasis on the "kind of"

That's funny...my husband was just saying that he needs to become a better fisherman to feed me. He doesn't get much time to between work, the kids and coaching soccer...but I would welcome some fresh fish!

Your bread like substance sounds good to me...but then again I'm hungry. Lol! Would you be willing to share the recipe when you have time?

Thanks

[jpach]

I feel like I have found family in this forum!!! I can't even begin to describe how amazing it felt to read the previous 9 pages of posts and realize that I am not alone! I am in the beginning of my journey and have found the internet to be a helpful, but scary and overwhelming place, when it comes to research. I was recently diagnosed with Mastocytosis. My only symptom at this point is urticaria pigmentosa (skin rash - looks like red freckles). I am of German and Irish decent, so I am no stranger to freckles! Sadly it makes people stare and kids ask questions and provides a general uncomfortable and self conscience feeling I don't like to wear a bathing suit or shorts and even tank tops make me a little uncomfortable. 

 

Reading through forums and low histamine vs. paleo vs. gluten-free ..... Agh! I am overwhelmed. I am getting the 24 hour urine test and the blood test done early next week, so I am sure that will tell me more. The thing is, I am not having outbreaks or harsh reactions like anaphalaxsis  (sp?). How can I tell if I am reacting to something?

 

I started gluten free earlier this week and don't really feel a difference yet. What I am getting pretty frustrated by is conflicting info. Alcohol is a no-no accept that it also acts as a histamine liberator. But I love wine and martinis.  Meat in the fridge is constantly building histamine, but here is a slow cooker recipe. Where to start?   I am thinking of going strict gluten free and continue taking my prescribed Singular, Zyrtec, and Benedryl and add in 1,000 mg of Quercetin, 500 mg of Bromelain, 500 mg of Nettle Extract and 1,000 mg of vitamin C a day. If I do not notice any changes with the urticaria, I am thinking of trying Open Original Shared Link or a Open Original Shared Link or Open Original Shared Link. I am trying to be patient, but that is not one of my virtues. I am curious though as to how I will 'see' or notice results if the rash doesn't go away. Will the rash go away if I stay gluten free? Is 30 days long enough to give any of the mentioned methods a shot? How do I know if my histamine levels are safe? Will a tanning bed help the urticaria symptoms? Doc mentioned PUVA therapy, will the tanning bed do the same thing? 

 

There are so many fantastic gluten-free websites with recipes that satisfies my foodie soul. Open Original Shared Link is awesome. So is Open Original Shared Link. Open Original Shared Link has some good gluten free recipes too. I have made dozens from each of these and have yet to be disappointed. Iowa Girl kills the Chipolte Burrito Bowl copycat! 

 

Anyone else have Mastocytosis? Does it get worse or can I coast along if I manage properly? 

 

I'm sorry for the wordy post. Just. So. Many. Questions. 

[GottaSki]

I feel like I have found family in this forum!!! I can't even begin to describe how amazing it felt to read the previous 9 pages of posts and realize that I am not alone! I am in the beginning of my journey and have found the internet to be a helpful, but scary and overwhelming place, when it comes to research. I was recently diagnosed with Mastocytosis. My only symptom at this point is urticaria pigmentosa (skin rash - looks like red freckles). I am of German and Irish decent, so I am no stranger to freckles! Sadly it makes people stare and kids ask questions and provides a general uncomfortable and self conscience feeling I don't like to wear a bathing suit or shorts and even tank tops make me a little uncomfortable. 

 

Reading through forums and low histamine vs. paleo vs. gluten-free ..... Agh! I am overwhelmed. I am getting the 24 hour urine test and the blood test done early next week, so I am sure that will tell me more. The thing is, I am not having outbreaks or harsh reactions like anaphalaxsis  (sp?). How can I tell if I am reacting to something?

 

I started gluten free earlier this week and don't really feel a difference yet. What I am getting pretty frustrated by is conflicting info. Alcohol is a no-no accept that it also acts as a histamine liberator. But I love wine and martinis.  Meat in the fridge is constantly building histamine, but here is a slow cooker recipe. Where to start?   I am thinking of going strict gluten free and continue taking my prescribed Singular, Zyrtec, and Benedryl and add in 1,000 mg of Quercetin, 500 mg of Bromelain, 500 mg of Nettle Extract and 1,000 mg of vitamin C a day. If I do not notice any changes with the urticaria, I am thinking of trying Open Original Shared Link or a Open Original Shared Link or Open Original Shared Link. I am trying to be patient, but that is not one of my virtues. I am curious though as to how I will 'see' or notice results if the rash doesn't go away. Will the rash go away if I stay gluten free? Is 30 days long enough to give any of the mentioned methods a shot? How do I know if my histamine levels are safe? Will a tanning bed help the urticaria symptoms? Doc mentioned PUVA therapy, will the tanning bed do the same thing? 

 

There are so many fantastic gluten-free websites with recipes that satisfies my foodie soul. Open Original Shared Link is awesome. So is Open Original Shared Link. Open Original Shared Link has some good gluten free recipes too. I have made dozens from each of these and have yet to be disappointed. Iowa Girl kills the Chipolte Burrito Bowl copycat! 

 

Anyone else have Mastocytosis? Does it get worse or can I coast along if I manage properly? 

 

I'm sorry for the wordy post. Just. So. Many. Questions. 

 

Welcome!  I can't answer most of your questions, but wanted to check...were you ever tested for Celiac Disease?  You need to be tested before removing gluten as the antibodies that are tested for are produced only in response to gluten consumption!!!

 

I know on the FaceBook Mast Cell and other internet Mast Cell forums there is a much larger mix of folks with Mastocytosis and other Mast Cell disorders...have you found some of those helpful?

[jpach]

Welcome!  I can't answer most of your questions, but wanted to check...were you ever tested for Celiac Disease?  You need to be tested before removing gluten as the antibodies that are tested for are produced only in response to gluten consumption!!!

 

I know on the FaceBook Mast Cell and other internet Mast Cell forums there is a much larger mix of folks with Mastocytosis and other Mast Cell disorders...have you found some of those helpful?

Thanks, Lisa! I tested negative for Celiac, but my doctor (who thankfully doesn't insist on cramming me full of meds) said that autoimmune disorders such as mine may benefit from a gluten free diet. This along with vitamins and only 3 prescriptions a day should help control the Mastocytosis. 

 

I will check out the Mast Cell forums. The only reasons I haven't found these helpful was the reactions and disease progression seems to be much further along than mine. 

[GottaSki]

Thanks, Lisa! I tested negative for Celiac, but my doctor (who thankfully doesn't insist on cramming me full of meds) said that autoimmune disorders such as mine may benefit from a gluten free diet. This along with vitamins and only 3 prescriptions a day should help control the Mastocytosis. 

 

I will check out the Mast Cell forums. The only reasons I haven't found these helpful was the reactions and disease progression seems to be much further along than mine.

Mine is pretty far along as well.

Good luck to you

[durrsakja]

Is there a way to tell MCAS apart from sulfite intolerance? I have been suffering from skin burning and redness these past few months (and chronic hives since my celiac diagnosis a year and a half ago) which were made worse by a bad reaction to antibiotics. Now my face and neck feel sunburnt when I have high histamine and high sulfite foods. Seems the lists of foods to avoid overlaps quite a bit. Any idea on how I can figure out which one is affecting me?

Also I am seeing a new allergist on Tuesday. Not sure if he will take the MCAS questions seriously but other than printing out the research do you guys have any tips on how to properly approach the subject? My previous allergist just told me to wait until the end of summer because heat was making my skin sensitive and did not consider MCAS as a real issue.