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Mast Cell Activation Syndrome (Mcas)

g f but still sick?

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#106 icelandgirl

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Posted 28 July 2014 - 03:58 PM

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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#107 GottaSki

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Posted 28 July 2014 - 06:42 PM

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.co...e-5#entry905063

Edited by GottaSki, 28 July 2014 - 07:01 PM.

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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#108 icelandgirl

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Posted 28 July 2014 - 07:02 PM

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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#109 GottaSki

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Posted 29 July 2014 - 06:52 AM

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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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#110 icelandgirl

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Posted 29 July 2014 - 08:06 AM

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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#111 GottaSki

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Posted 31 July 2014 - 06:49 AM

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

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#112 icelandgirl

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Posted 31 July 2014 - 08:58 AM

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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You never know how strong you are, until being strong is your only choice.
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#113 GF Lover

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Posted 31 July 2014 - 09:52 AM

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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HAVE A SUPER SHINY DAY

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

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#114 icelandgirl

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Posted 31 July 2014 - 11:02 AM

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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#115 GF Lover

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Posted 31 July 2014 - 11:38 AM

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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HAVE A SUPER SHINY DAY

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

Celiac.com - Celiac Disease Board Moderator

 

hairy-spider-smiley-emoticon.gif


#116 icelandgirl

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Posted 31 July 2014 - 01:28 PM

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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You never know how strong you are, until being strong is your only choice.
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#117 icelandgirl

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Posted 31 July 2014 - 01:30 PM

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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You never know how strong you are, until being strong is your only choice.
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#118 GottaSki

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Posted 31 July 2014 - 04:58 PM

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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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#119 icelandgirl

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Posted 31 July 2014 - 07:27 PM

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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You never know how strong you are, until being strong is your only choice.
Bob Marley

#120 jebby

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Posted 07 August 2014 - 05:11 PM

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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