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Mast Cell Activation Syndrome (Mcas)
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That must have been the page right after I got scared or bored ;)

Thank you both!!

 

Been there...done that...always bookmark and keep reading when ready :)

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My doctor is going to call the Mastocytosis Society. She said she has one other patient with it and that in the past, it was believed to be very rare. She is fully on board with trying out the newly proposed testing. She believes after looking at my file that I'm a good candidate for it but it didn't get me out of seeing the cardiologist. Slow heart rate can also make a person feel lousy. That appointment is on Monday. She also said my tests in October indicate a lot of damage and that my body could be reacting to food (in general). We are running those tests again. She said it's really going to take a long time to heal. Starting in March, my mom went on hospice, I began reintroducing foods (dumb) and stopped taking some vitamins because I ran out and was overwhelmed.

I had a heel scan at my Mom's place and it was -1.9 (-2 = osteoporosis). I'm making an appointment to get a Dexa scan. I go between my bed and my Mom's bed. It takes me all day to rest and then get ready to look descent so she doesn't worry about me while she's taking her leave. I make her as comfortable as possible and give her tender love with aromatherapy, old pictures and nighttime talks (not every night because I can't get there). It is gut-wrenching all by itself. She has Parkinson's and reading about the relationship between MCAS and Parkinson's is about all I can take since I have a front row seat with my beautiful mother. I'm looking for ways to put myself at ease. Send me an angel.

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Thanks to OP now I know why although most of my symptoms improved after going gluten-free I had very bad allergic reactions after having some mayonaisee and eggs and why I sometimes feel bad after having refined sugars. Thank you, IrishHeart! However I want to ask if one can get those symptoms by Leaky Gut after going gluten-free? Leaky Gut vs MCAS?

 

As of now it's still self Dx because doctors here in Eatsern Europe don't know what MCAS is at all. Any suggestions on how to avoid future flares apart from avoiding the thriggering foods?

Edited by radley
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I hope I'm not too late to this party to get some input.  :)

 

I'm not saying that I have MCAS or a histamine intolerance...but am wondering.  I'm still struggling with D 7-10 days a month, tons of bloating, dzziness/lightheadedness at times, fatigue, etc.  I just went through a week and a half period of pelvic pressure, needing to pee constantly without a uti present.  I have severe seasonal allergies that I am currently doing allergy shots for weekly.  I take Allegra every day and have for years.  

 

Something happened after I ate dinner last night though and when I looked into what I ate....there was a lot of histamine involved.  I had a salad with steak, quinoa penne and caramelized onions.  The onions were cooked in olive oil and balsamic vinegar...there was also balsamic vinegar in the salad itself.  After I finished eating...just minutes later, my nose was runny, itchy, face was flushed, my head felt funny, my lips got itchy.  I felt weird the rest of the night.  I took a Benadryl before bed, normally that makes me very sleepy, yet last night I had a difficult time falling asleep.

 

I have an appointment with my allergist next week to talk about my allergy shots so I'm planning to talk to him at that time.  I'm just wondering...could this be histamine intolerance?  I know that weeds and grasses are really high in our area right now and I'm a 4+ on the allergy testing on all of those so I know there's a lot going on with my body already.  

 

I'm sitting here though wondering what's up with my body and scared to eat breakfast.  I've been having a smoothie every day with bananas, berries, protein powder and either coconut water or almond milk.  But I'm scared to have the bananas and strawberries now.

 

Any thoughts or advice for me?  Thanks! :)

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I wouldn't jump straight to HIT or mast cell if you've been dealing with allergies.

Sometimes allergies change or worsen...so if you have been dealing with them long term it would seem you are experiencing a continuation of that and not a separate histamine issue.

Definitely talk to your allergist...perhaps try removing HH foods for a week before your next appt or perhaps you just need to try a different antihistamine or combo during your high allergy periods??

On a side note...Benadryl always put me to sleep...until recently....if I'm having one of my worse reactions I feel pretty normal after taking Benadryl...like my body is using it up. If I'm having a minor reaction Benadryl still knocks me out.

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I wouldn't jump straight to HIT or mast cell if you've been dealing with allergies.

Sometimes allergies change or worsen...so if you have been dealing with them long term it would seem you are experiencing a continuation of that and not a separate histamine issue.

Definitely talk to your allergist...perhaps try removing HH foods for a week before your next appt or perhaps you just need to try a different antihistamine or combo during your high allergy periods??

On a side note...Benadryl always put me to sleep...until recently....if I'm having one of my worse reactions I feel pretty normal after taking Benadryl...like my body is using it up. If I'm having a minor reaction Benadryl still knocks me out.

Thanks for responding Lisa...I really appreciate it.

 

I'm definitely not jumping to it...just considering.  I had just recently read Jess' blog discussing it so things were on my mind.  Add to that weird stuff that's happened...like 2 times in 3 weeks having what I thought had to be a UTI...just wasn't...and this second time it took about 10 days to stop.  Interestingly...thanks to my food journal...I discovered that for 2 nights before both of these episodes I drank a glass of red wine.  Weird?  It's the only wine I've had during the time as well.

 

I'm still having 7-10 days of D each month and I'm so gluten free.  I'm still so bloated all the time.  I guess then the whatever happened last night really made me start thinking.  I looked up stuff with what I ate and balsamic vinegar is an HH.  So...maybe?  Just don't know.

 

Anyway, I was thinking I could do low histamine for the next week until my appointment so I have something more definitive to discuss with him.  I'n struggling though.  Already gluten free...cut out dairy and soy a week ago to see if it would help with bloating and now this.

 

Can you give me an idea of what you eat for breakfast because that is trickiest for me right now?  I'd love input.  Also, do you think I need to cut out the histamine liberators as well...strawberries, bananas?  I can't tell from list to list whether almonds are ok...do you know?  How about coffee?

 

I don't take medicine much if I don't have to because I have such strong reactions...normally Benadryl takes me out.  Last night I was just laying there, thinking.  It was strange.

 

Thanks as always for your help and wisdom.

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Bananas were making me bloat before I put all the pieces together so I don't eat them...I do eat an occasional strawberry, but no longer load them in my morning smoothie.

With histamine the idea is to reduce as much as possible for a period and then trial how much you can tolerate. You may have already read the "cup" analogy...there are many items that cause the body to release histamine and other mediators...once you get to a certain point from food, environmental items and other items your "cup" is full..if more is/are released the body cannot properly clear the excess.

Almonds are low with regard to histamine...I can eat them, but not other nuts. Soy is HH, but some dairy is ok...just need to avoid aged cheeses primarily.

There is a really good link to the list I utilize...it rates the amount of histamine and notes whether it triggers histamine release....it is in this thread a few pages back. If you avoid all 2s and 3s and limit the 1s...you'll be doing a good trial.

For breakfast I have a smoothie most days and eat a larger lunch with meats, veggies and some fresh cheese most days. I have added eggs back recently, but was not able to eat them for a very long time.

Hang in there...how long have you been gluten-free now?

Here's the page with the list:

http://www.celiac.com/gluten-free/topic/105835-mast-cell-activation-syndrome-mcas/page-5#entry905063

Edited by GottaSki
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Bananas were making me bloat before I put all the pieces together so I don't eat them...I do eat an occasional strawberry, but no longer load them in my morning smoothie.

With histamine the idea is to reduce as much as possible for a period and then trial how much you can tolerate. You may have already read the "cup" analogy...there are many items that cause the body to release histamine and other mediators...once you get to a certain point from food, environmental items and other items your "cup" is full..if more is/are released the body cannot properly clear the excess.

Almonds are low with regard to histamine...I can eat them, but not other nuts. Soy is HH, but some dairy is ok...just need to avoid aged cheeses primarily.

There is a really good link to the list I utilize...it rates the amount of histamine and notes whether it triggers histamine release....it is in this thread a few pages back. If you avoid all 2s and 3s and limit the 1s...you'll be doing a good trial.

For breakfast I have a smoothie most days and eat a larger lunch with meats, veggies and some fresh cheese most days. I have added eggs back recently, but was not able to eat them for a very long time.

Hang in there...how long have you been gluten-free now?

6 months. Today is the first day since I don't know when that I haven't had a banana or strawberries. Weird. What do you put in your smoothie? Those really were my staples.

The bloating is really bothering me...it feels so uncomfortable all the time. I would love to do something to relieve it.

I got your list and that is super helpful. I am going to do this for the next week. Hoping for anything that helps this feeling. I welcome any other thoughts or help you want to throw at me. I've been feeling very discouraged. I need to do something that will help. It sounds like you are doing better....that's so great!

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Six months feels like a very long time, but in reality it can take longer to heal. Have you had your celiac antibodies run again? Checked all supplements, medication, etc for gluten? Are you living in a shared kitchen? If all these things have been addressed it is time to look to other intolerance.

In my opinion if you are having allergic type reactions and bloating...I would start with a histamine and histamine inducing food elimination before trailing other groups. As you can see by the list...these foods cross over into all other food groups. For example...I likely never had an issue with dairy, only aged cheeses. Can't tell you how nice it was to get butter, cream and fresh cheese back into my diet :)

My smoothies are all different....I usually add either kale or cucumber to a sweet fruit like pears. I limit my blueberries, but do prefer a purple smoothie to a green one ;). Some days I do coconut milk, almonds and agave.

Understand...I have a funky system...if I eat even my safe foods before exercise I have a worse reaction to exercise. If you do not have such an issue, I strongly suggest eating a real breakfast based on foods that are good for your body...I don't stick with "breakfast" foods for breakfast on the days that I skip exercise I've been know to have stir fry or hamburger with sweet potatoes for breakfast.

If you eat gluten-free oatmeal, quinoa or rice...all are good with cinnamon and apples in the morning.

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6 months feels like forever...mostly because I so desperately want to feel good and be able to be as good a mom to my 3 kids as possible. I had my antibodies checked a month ago and things had improved a lot. All of me medications are gluten free and the only supplement I take is a probiotic which is as well. My kitchen is somewhat shared. I cook all meals gluten free but my kids still have their cereals, crackers and waffles. I have a new toaster for my stuff.

I started the dairy and soy thing a week ago but have seen no difference at all in how I feel. Then I read Jess' blog and thought maybe that could be it. So I guess I need to just try the low histamine for the next week and hope for something. Beyond that I'm not sure what to do. Go back to the doctor...always frustrating. Ask to be tested for sibo? I don't know. I do feel discouraged...I want so much to feel good...or even great!

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6 months feels like forever...mostly because I so desperately want to feel good and be able to be as good a mom to my 3 kids as possible. I had my antibodies checked a month ago and things had improved a lot. All of me medications are gluten free and the only supplement I take is a probiotic which is as well. My kitchen is somewhat shared. I cook all meals gluten free but my kids still have their cereals, crackers and waffles. I have a new toaster for my stuff.

I started the dairy and soy thing a week ago but have seen no difference at all in how I feel. Then I read Jess' blog and thought maybe that could be it. So I guess I need to just try the low histamine for the next week and hope for something. Beyond that I'm not sure what to do. Go back to the doctor...always frustrating. Ask to be tested for sibo? I don't know. I do feel discouraged...I want so much to feel good...or even great!

I. Get. This!

Could have written the same thing at month seven....when I removed gluten my digestive system improved at first, but all my autoimmune and inflammation type symptoms got worse....oh so frustrating.

My best advice would be try removing histamines for one week...if you don't notice any improvement (don't expect miracles...just note less bloating or less pain or better bathroom visits, etc), than I would do a strict elimination diet ... I spent two years trying to remove single food groups with no real improvement. When I finally did an elimination of all high lectin foods....turned out I was reacting to many groups which is why we couldn't root out the problem by removing single foods or groups for all that time.

Hang in there...it can get better...but might get more frustrating before you get there.

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Lisa...you have no idea how much it helped me to read this...just hearing that someone gets it makes me want to cry!

 

I thought things were getting better.  April was so darn good!  Then something happened...I don't know...and things haven't improved since.  It's really hard and discouraging.  When I walked out of my Dr's office I really thought I had to just eat gluten free.  And I do that...really well.  I don't go out to eat.  I cook everything myself.  I'm frustrated.  How do you stay so positive?

 

Sunday it will be 2 weeks without soy and dairy.  Then I'm planning to introduce one back at a time and see.  Low histamine ones I guess.  What cheeses are fresh and low histamine?  I would love cheese right now.

 

I'm so hungry.  And I feel afraid of food.  I'm continuing to lose weight...but really all I'm eating is meat, fruit, veggies and almonds.  I don't really want to lose anymore weight because my pants are all hanging off my butt.  I've got 3 kids, 2 headed back to school tomorrow and I need to get clothes for their growing bodies.

 

Absolutely hanging in there, but having a hard time staying positive.  :(

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Hard cheeses have the higher histamines.  Blue cheese, philly etc. have the least. Hang in there girl.  I took me two years to start feeling close to normal again.  Remember, if one AI disease acts up...it may cause the others to flare also.  It seems like it's always something.  I lost weight before i gained and evened out again.  I was also afraid of food, first because it hurt so bad to eat, then after gluten-free I was afraid of the prior pain again.  I juiced everything for around 1 month or so and slowly introduced foods until the fear subsided.  At this point, more good days than bad is a blessing.

 

Hang in there  :)

 

Colleen

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Hard cheeses have the higher histamines.  Blue cheese, philly etc. have the least. Hang in there girl.  I took me two years to start feeling close to normal again.  Remember, if one AI disease acts up...it may cause the others to flare also.  It seems like it's always something.  I lost weight before i gained and evened out again.  I was also afraid of food, first because it hurt so bad to eat, then after gluten-free I was afraid of the prior pain again.  I juiced everything for around 1 month or so and slowly introduced foods until the fear subsided.  At this point, more good days than bad is a blessing.

 

Hang in there  :)

 

Colleen

Thanks so much Colleen. I'm obviously in serious need of encouragement right now. It does feel like it's always something...I get to where I'm like...why is this so hard! I don't want my kids feeling like mom is always sick but the 2 older ones go back to school tomorrow and there were plenty of bad days this summer.

I used to love food! Lol! I love cooking and baking, but right now it feels like anything could make me feel bad. I'm hungry.

Thank you again...just what I needed. I welcome any further wisdom you would like to share as well.

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Just think.  The more time that goes by, the more you are healing and your body is constantly adjusting to the ongoing changes.  This is all good stuff.  It took us a long time to get this way...it takes a long time to heal from it.  Remember, each day is a step closer to the goal.

 

Your not alone hun.  We've been there and will help and encourage you through it.

 

Colleen

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Just think.  The more time that goes by, the more you are healing and your body is constantly adjusting to the ongoing changes.  This is all good stuff.  It took us a long time to get this way...it takes a long time to heal from it.  Remember, each day is a step closer to the goal.

 

Your not alone hun.  We've been there and will help and encourage you through it.

 

Colleen

Thanks so much...just what I needed.
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Speaking of food...I want a piece of bread. It's that fun time of the month and I'm avoiding chocolate because of the histamine thing. Anyone know of a bread or have a recipe for one that is gluten, dairy, soy free and low histamine? Just want something like that. Hmmm...

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Speaking of food...I want a piece of bread. It's that fun time of the month and I'm avoiding chocolate because of the histamine thing. Anyone know of a bread or have a recipe for one that is gluten, dairy, soy free and low histamine? Just want something like that. Hmmm...

How about pancakes?

I stay positive, but have gone through periods that I am way beyond frustrated. The hardest periods are the flares that follow big improvement...those have been hardest on my family too.

Kids are tough...they are likely more sad that Moms feeling sick than about missing good times with you this summer. Here is what I did. Tell them age appropriate truth and when you have a good day...make sure to carve out time for them...even if that means a hookie day...save an hour or two to make sure school work gets done so they don't fall behind ;)

Six months really is still early days. You will continue to improve. Try (one that I'm still learning...each day) to reduce stress...guilt about what hasn't been completed or time you were unable to do fun things will not help. In fact...stress can cause inflammation! Take a tub, go for a short walk by yourself with an iPod...read a book...and hang in there...sometimes all we can do is hang on!

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How about pancakes?

I stay positive, but have gone through periods that I am way beyond frustrated. The hardest periods are the flares that follow big improvement...those have been hardest on my family too.

Kids are tough...they are likely more sad that Moms feeling sick than about missing good times with you this summer. Here is what I did. Tell them age appropriate truth and when you have a good day...make sure to carve out time for them...even if that means a hookie day...save an hour or two to make sure school work gets done so they don't fall behind ;)

Six months really is still early days. You will continue to improve. Try (one that I'm still learning...each day) to reduce stress...guilt about what hasn't been completed or time you were unable to do fun things will not help. In fact...stress can cause inflammation! Take a tub, go for a short walk by yourself with an iPod...read a book...and hang in there...sometimes all we can do is hang on!

Thank you again for your kindness and wisdom.  You've helped me so much!

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Icelandgirl,

 

It will get better, I promise! I remember hitting a point about 2 years ago when I seriously wished that I would never have to eat anything again because I felt like I was getting sick from everything. Your kids will be okay. None of my kids seem to even remember that I was in such a bad place a few years ago.

As for bread, have you ever come across socca bread?

Jess

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Icelandgirl,

 

It will get better, I promise! I remember hitting a point about 2 years ago when I seriously wished that I would never have to eat anything again because I felt like I was getting sick from everything. Your kids will be okay. None of my kids seem to even remember that I was in such a bad place a few years ago.

As for bread, have you ever come across socca bread?

Jess

Thanks so much for the encouragement Jess...I appreciate it.  Also want to say that I really enjoy your blog.  :)

 

I've become afraid of food.  I hate that.  I've always enjoyed cooking and baking and eating it.  Now, I feel myself just not wanting to eat...what else will bother me?  I did dairy and soy free for 2 weeks and no change.  Added back in a little dairy, no change.  I've done low histamine for a little over a week...I don't know if it's helping or not.  I miss strawberries and bananas.  I feel like there's only a few safe things to eat and I'm hungry, but afraid to eat.  This is so psychological!

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Thanks so much for the encouragement Jess...I appreciate it.  Also want to say that I really enjoy your blog.  :)

 

I've become afraid of food.  I hate that.  I've always enjoyed cooking and baking and eating it.  Now, I feel myself just not wanting to eat...what else will bother me?  I did dairy and soy free for 2 weeks and no change.  Added back in a little dairy, no change.  I've done low histamine for a little over a week...I don't know if it's helping or not.  I miss strawberries and bananas.  I feel like there's only a few safe things to eat and I'm hungry, but afraid to eat.  This is so psychological!

Try not to fear food. I know it's tough when you feel crappy and can't pinpoint what is causing it. If you aren't sure with the removal of histamines ...give it a bit longer. If you aren't improving at all then it may be some other food group or environmental factor or stress..etc.

Do something just for you every day...even if it is for a short time.

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Try not to fear food. I know it's tough when you feel crappy and can't pinpoint what is causing it. If you aren't sure with the removal of histamines ...give it a bit longer. If you aren't improving at all then it may be some other food group or environmental factor or stress..etc.

Do something just for you every day...even if it is for a short time.

I hear you, Lisa, I do. I just can't figure it out. I'm hungry a lot of the time and I look at food and just don't know. This is taking a huge toll on me mentally. I am trying to do something for me each day...but even when I do I have a hard time not thinking about all of this. On the bright side I had a good appointment with my allergist this week...wrote about it in the Hashi's thread...and that was helpful.

What can you always eat safely...without issues?

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I hear you, Lisa, I do. I just can't figure it out. I'm hungry a lot of the time and I look at food and just don't know. This is taking a huge toll on me mentally. I am trying to do something for me each day...but even when I do I have a hard time not thinking about all of this. On the bright side I had a good appointment with my allergist this week...wrote about it in the Hashi's thread...and that was helpful.

What can you always eat safely...without issues?

 

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" ;)

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doh...forgot fruit...most fruits that aren't on the HH list

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