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Mast Cell Activation Syndrome (Mcas)

g f but still sick?

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130 replies to this topic

#16 GottaSki

 
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Posted 06 January 2014 - 09:09 PM

Just because I've been researching this after eating what I thought was a completely low histamine diet and still had a reaction:  I found egg whites on a list of "foods with potential histamine releasing effects":  Also here is an in depth explanation of why eggs may be bad for some (although it does not properly cite sources- so take it for what it's worth!): http://www.thepaleom...tocol-eggs.html

 

In a private conversation with Dr. Jess (man, her ears must be RINGING!) I asked her about the eggs and she said she had a strong reaction to them at her worst. I had eggs for four consecutive mornings before the last reaction (during which I was pumping antihistamines :angry: ). I itched on day 3 and had full out hives through the antihistamines on day 4.  Just a warning for those just now figuring this out  :) How many people on here have said they can't eat eggs?!?!  I didn't think I had a problem with them before now and hopefully I'll be able to reintroduce them later.  

 

After that experience, I decided to just say "screw you" to food.  I'm trying the paleo Autoimmune Proticol (AIP) for 30 days (without high histamine foods) and seeing if it resets my system.  I'm starving, but trying to get the hang of it.  No grains, no nuts, no seeds, no eggs, no night shades, no, no, and no.  This better work.  It resembles Gotta Ski's diet, so maybe there is something to it...

 

Oh man...it is tough to remove all the no, no's....I can tell you it gets easier...

 

I started an elimination diet geared to Autoimmune Disease back in August 2011 because we couldn't identify any specific additional intolerances during my first two years gluten free -- LOL...upon trial I ended up intolerant of everything except eggs (which I lost later to histamine) and butter...wish I could tell you I got foods back, but I failed all trials miserably...at least all my trials revealed clear reactions that I never would have sorted out had I not removed everything at once.  Do make sure when you start re-introducing foods that you do it one food item (not group) with at least three days between each trial as some reactions are not immediate.  I started those trials three weeks after I removed everything (took about 4 days to notice huge improvement).

 

If you do find improvement during the elimination -- might want to consider leaving high histamine and histamine inducing out to trial them last.  Kinda interesting back in the very first weeks of my elimination diet I ate an avocado (hadn't removed as I had no idea about histamine) and had immediate swelly belly to the point of looking about 8 months pregnant...never understood why I lost them until the hista connection.

 

The good news is most folks are able to add many items back in during the initial trial and even more after 6 months.  That you are removing histamines long before I figured it out...one year after my initial elimination diet,,,is really a very good plan if you suspect histamine intolerance or any mast cell disorder....not easy but worth it.

 

Now about this starving dealio....besides meat and standard veggies...you do know sweet potatoes, yams and purple sweet potatoes are not nightshades...I eat them often. Also, Zu-noodles....zucchini spiralized into a pasta like substance and other squash - spaghetti and butternut are my staples...butternut squash fries roasted in the oven are yummy.  Oh...fresh herbs really help ... I generally use cilantro or basil...but all herbs help spice things up :)

 

I can tell you even though I miss many foods I can say without a doubt I wish I would have known to try removing everything at once - including histamines - much earlier.

 

I am crossing what I got that you improve during your 30 day reset and are able to regain many, many, many, many, many - did I say many? - foods that you have removed.

 

Hang in there -- you can do this!!!


  • 1

-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 :)


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#17 anti-soprano

 
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Posted 07 January 2014 - 12:46 AM

Thanks Lisa!! I will eat more once I figure out how to manage the cooking.  I'm not what I would call handy in the kitchen, with the exception of the microwave :)


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#18 IrishHeart

 
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Posted 07 January 2014 - 05:25 AM

I can tell you this: eggs gave me nausea, cramps and the big D --my whole life--and now, they don't. Yaay!

So the eggs may be a person-to-person issue.  

 

The various lists of histamine foods vary online, I know --but the urticaria association does not eliminate them.

I have been on a Paleo diet for a few weeks and my egg consumption has increased, but my histamine level has reduced.

(the flare up of symptoms I had last week resulted from my own stupidity- <_< -chocolate, champagne, lobster , sauerkraut--were all consumed during the holidays and the level built up inside me and bam!)

 

I can also tell you that my multiple chemical sensitivities resolved!

For the entire time I was ill before diagnosis and two years after, I could not even walk into one of those candle shops for a while there.

I had to give up perfume, anything with peppermint (how odd, I know) and the smell of things like bus exhaust, etc, would make me want to hurl.

 

I would say to the hubs--Can't you SMELL that?! Man, that's awful!--often and he would look at me like I was insane. LOL  Apparently, my sense of

smell was so acute that I was overwhelmed and it was sensory overload. Lights were too bright, sounds were assaultive, that sort of thing. 

It was like my adrenals were pumping so hard and I was on high alert. I had heart palps so bad, yet doctors told me my heart was fine.

I would have restless legs and be up half the night. Itching --but my skin was on fire, so of course, that HURT--and the little red sores on my face and scalp were just awful. I felt like someone gave me a sleeping pill some days and my bones BURNED.

 

All that nonsense stops when I avoid high histamine foods.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#19 jebby

 
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Posted 07 January 2014 - 06:35 AM

THANK YOU Irish Heart and Dr. Jess!  I look forward to convincing my allergist to test me on Thursday.  Thanks to you both, I will go armed with scientific validation that MCAS exists and that I have many of the symptoms. 

 

Shellie

Hi Shellie,

Good luck with your appointment. My allergist, who is also a friend of mine, did not initially believe that I could have MCAS because he had never seen a case of it before me (he actually had, but since he didn't know about it, he didn't know to evaluate his patients for it). Through my conversations with Dr. Afrin, who I am pretty sure did not invent the nasal spray, many doctors believe MCAS is very rare, but once they see a case or two of it, they will start to see it in their practices all of the time.

I feel that we are just at the beginning wave of awareness of this disorder, and the rates of diagnosis are much lower than even celiac disease. Please keep us updated on how your appt goes!

Jess

P.S. Also, just as an FYI, the 24 hour urine samples have to be chilled or kept on ice at all times, if you allow it to get too warm the results will be meaningless.


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#20 IrishHeart

 
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Posted 07 January 2014 - 06:38 AM

Jess,

I heart you. :)

Thanks for sharing so much with us.

G


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#21 jebby

 
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Posted 07 January 2014 - 06:42 AM

 

Dr. Jess is one of us. :) She is not a 'celiac doctor"--she is just a doc who has celiac.

She is recovering herself and has graciously shared her knowledge and insight. 

We "met" on here and on Gluten Dude's site and compared notes and  when she told me she was writing this article, I had to post it.

 

I have put this info out there many times on here, but her article is comprehensive and so, I felt I should write the post and link to it.

 

As for food lists..

 

 

 

 

Foods that have lower histamine levels :

  • Fresh meat  and fowl, game meats

  • Freshly caught fish

  • Chicken

  • Eggs

  • Fresh fruit such as: apple, apricot, blueberry, cranberries,, mango, melon, red currants

  • Fresh vegetables: all okay except Tomatoes, eggplant, avocado

  • Grains: all gluten-free grains are fine: corn, rice, oats, millet, etc .

  • Fresh milk and milk products OR substitutes for milk ie. coconut milk

  • Cream cheese, cottage cheese

  • All fruit juices BUT NOT CITRUS OR TOMATO

Foods that have higher levels of histamine:

  • Alcohol, especially beer and wine

  • Pickled or canned foods

  • Cheese: especially mature cheese – the more mature ,the more histamine it contains

  • Smoked meats, smoked ham, bacon and Salami, etc.

  • ALL SHELLFISH and  canned fish

  • Beans and pulses (especially chickpeas, soy beans, and peanuts)

  • Soy products (soy milk, soy cream, tofu, soy sauces.)

  • Sauerkraut or other pickled foods

  • Some fruits (, bananas, kiwi, oranges, papaya, strawberries, pineapple)

  • Cashew nuts

  • Chocolate, cocoa, salty snacks, sweets with preservatives and artificial colorings

  • Products made from wheat (easy for us to avoid)

  • Vinegar

  • Yeast

  • Ready- made meals

  • Black tea

  • Additives: Benzoate, Food dyes,  Nitrites, Sulphites

 

Hi again Irish Heart,

Thanks for sharing this list. My worst reactions, but far, since 2012 have been from foods and drinks with added sulfites, such as dried fruits, wine, vinegar, etc.  As I've gotten the MCAS under control with antihistamines, quercetin, and probiotics, as well as keeping my histamine intake low, I have been able to add some of the foods back in, such as eggs, avocado, chocolate (as long as I eat them in moderation). If I have been glutened, my MCAS symptoms usually skyrocket about 1 to 2 weeks later. I can tell because I will start to have mild wheezing.

I always carry an Epipen wherever I go as I travel quite a bit. One of my scariest reactions was last summer on an airplane and I came very close to having to use it. 

J


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#22 jebby

 
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Posted 07 January 2014 - 06:44 AM

Jess,

I heart you. :)

Thanks for sharing so much with us.

G

Hi G,

The feeling is mutual. Thank you so much for giving me the opportunity to share my experiences!

J


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#23 IrishHeart

 
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Posted 07 January 2014 - 07:28 AM

Thanks Irish and Dr. Jess!

 

I too figured this out in the year since I realized histamine was a big part of my puzzle.  It is tough to get diagnosed...but heck many of us with these symptoms are used to doing our own research.

 

I love that Dr. Jess has organized this info to be found in one spot...took me quite awhile to find it all on my own.

 

 

 

 

My SkiLisa was the first one I met who had these symptoms besides me and we talked about it at length and compared our notes...we had all the research and had our Eureka moments together! It was validating to have Lisa concur with me....and my GI doc too....and then, I met Jess.

 

I KNOW there are more of us with this celiac taga-long It's not something most doctors are aware of.

3 years ago., I had an allergist look me right in the eyes and say with a huff "You don't have allergies! "

Technically, he was right....but what was CAUSING all that misery?

 

Meanwhile, my face and skin was bright red, full of spots, my nose was dripping, my eyes half -closed and tearing, my throat half closed and scratchy and my mouth was burning. My skin was on fire and my head was swimming with brain fog.

I left there and thought...great, another one who thinks I am just making stuff up. Bah! 

 

They just may not think outside the box . And how would any of us know if we are not our own best advocates?

 

We have to be.


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#24 GottaSki

 
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Posted 07 January 2014 - 07:37 AM

Thanks Lisa!! I will eat more once I figure out how to manage the cooking.  I'm not what I would call handy in the kitchen, with the exception of the microwave :)

 

Let us know if we can help...Preparing limited whole foods is actually a great way to get used to cooking as there are not many ingredients to worry about.

 

I'll PM you so I don't turn this into a cooking thread ;)


  • 0

-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 :)


#25 dilettantesteph

 
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Posted 07 January 2014 - 11:49 AM

I have a question.  If you know that you can eat large amounts of high histamine foods without symptoms, can you pretty well rule this out as the source of continued problems?  This would be continued problems that come and go, but not in relation to eating high histamine foods.  Can it be for example, that stress is your trigger, and high histamine foods need to be eliminated during a stressful period, but in absence of stress, you can eat all the high histamine foods that you want without experiencing any symptoms?


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#26 IrishHeart

 
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Posted 07 January 2014 - 12:11 PM

I have a question.  If you know that you can eat large amounts of high histamine foods without symptoms, can you pretty well rule this out as the source of continued problems?

 

 

 

I would think so, yes. but perhaps Jess and Lisa have some other thoughts. 

 

 

ETA: I am not "sure" about anything regarding this thing, however, since it does not seem to be very predictable or consistent. <_<


Edited by IrishHeart, 08 January 2014 - 05:18 AM.

  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#27 IrishHeart

 
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Posted 07 January 2014 - 02:22 PM

Of NOTE:

"It is thought that approximately 1% of the population suffer from histamine intolerance (with 80% of these being middle-aged women), similar numbers to what is commonly seen with the likes of food allergies, celiac disease, etc.

 

As with these other reactions however, it is thought that this number might be an underestimation, particularly in light of most individual’s likely lacking awareness of histamine and its potential effects."

 

 

and

 

"Given the associations with other inflammatory states, including neoplastic conditions, it may be prudent, if a diagnosis of histamine intolerance is made, to also look for these underlying conditions (coeliac disease, Crohn’s disease, ulcerative colitis, colonic adenoma). It also pays to assess for some of the nutritional cofactors that are either involved with normal DAO activity (vitamin B6, copper), or histamine breakdown (vitamin C)."

 

Makes sense that someone with celiac or other GI autoimmune diseases would be affected by this HIT then. 

 

 

These thoughts came from a very good article on histamine intolerance with citations here

 

http://thatpaleoguy....ne-intolerance/


  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#28 GottaSki

 
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Posted 07 January 2014 - 03:35 PM

I have a question.  If you know that you can eat large amounts of high histamine foods without symptoms, can you pretty well rule this out as the source of continued problems?  This would be continued problems that come and go, but not in relation to eating high histamine foods.  Can it be for example, that stress is your trigger, and high histamine foods need to be eliminated during a stressful period, but in absence of stress, you can eat all the high histamine foods that you want without experiencing any symptoms?

 

Interesting question.

 

Since there is no one protocol that works for everyone with mast cell disorders, I don't think this is a yes or no question.  If limiting high histamine and histamine inducing foods along with antihistamines and mast cell stabilizers helps the body from reacting to triggers by limiting the amount of histamine and other mediators being released in the body during mast cell degranulation, then it seems prudent to reduce or remove these foods.

 

If a person did have only the one trigger of stress and removing histamine foods during times of stress relieved symptoms then it seems to follow that they could eat more of these foods when not under stress....I just don't see a scenario where there is one clear trigger or a way to know which life event or combination of events would be the catalyst of symptoms.

 

In my opinion, there are just too many pieces to this puzzle for a clear answer.


  • 0

-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 :)


#29 Adalaide

 
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Posted 07 January 2014 - 05:13 PM

I've mostly be lingering and watching. But I thought I'd just poke my nose in and say that I have this issue too. It took months of being beat over the head with the obvious before I admitted it, mostly because I'm stubborn and it was a third entire group of foods to eliminate and I was very resistant. It made a world of difference for me though. Honestly, the most remarkable and immediate was that I stopped using my allergy medication which I had been taking daily for half my life and only sort of worked. I'm waiting to see what spring is like though, since I do have severe tree pollen allergies.

 

For me personally, the two absolute worst offenders are tomatoes and hard cheeses. Processed is worse, and the harder the worse off I'll be. On the other hand, chocolate doesn't seem to bother me at all. Most other things fall somewhere in between. I balance my preservatives, other cheeses (A POX UPON... SOMETHING!) and pretty much everything else I eat very carefully. Most of the time. And when I don't, I end up with days like today and remember why I'm doing this.

 

I do the whole allergic to heat thing over this too which is darn inconvenient in the summer. I have to plan my whole life around the weather, plan what I'm doing at certain times of day. I almost can't leave home between certain hours at all and even in the evenings in summer and into fall I don't leave home without a sack of ice packs. (Thank you Lisa, saved my butt more than once last year!)

 

The whole thing is annoying, but manageable and life gets better following an appropriate diet. And, for some of us if necessary, we need to follow additional plans to minimize exposure through means other than diet but I'm not sure how many other people that bothers. Even with what seemed at first to be micromanagement of my entire life over this, it's as much second nature now as being gluten free and I'm so much better off. I'll review before hitting farmers markets and roadside stands in the spring (because I have SO MANY things I can't eat, personally), throw a sack of ice packs in my backpack and not give any of this a second thought.


  • 2

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#30 IrishHeart

 
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Posted 07 January 2014 - 05:58 PM

I've mostly be lingering and watching. But I thought I'd just poke my nose in and say that I have this issue too. It took months of being beat over the head with the obvious before I admitted it, mostly because I'm stubborn and it was a third entire group of foods to eliminate and I was very resistant. 

 

:)  fortunately people who care about you are more persistent than most?

 

...and just be careful of the risotto.xx love, "mom"


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





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