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Mast Cell Activation Syndrome (Mcas)


IrishHeart

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IrishHeart Veteran

Gluten free ---but feel as if you have been glutened? Have bone pain, your brain is fogged up, feel as if you have allergies, but you test negative?  Maybe your heart races and you feel anxious, but have no clue why as you are not really an anxious person by nature?

Feel like a vampire  when you step out into the sun?

 

Any of these below sound familiar?

 

  • Gastrointestinal symptoms, including nausea, vomiting, diarrhea, abdominal pain, bloating (sounds a lot like celiac and/or irritable bowel syndrome doesn’t it?)
  • Low blood pressure
  • Fatigue
  • Wheezing
  • Itching, flushing, hives, sores on the face and scalp
  • Episodes of fainting or dizziness
  • Bone pain
  • Cognitive impairment (brain fog)
  • Anxiety
  • Rapid weight gain or loss
  • Anaphylaxis
  • Chest pain and/or a racing heart
  • Sensitivity to sunlight

These symptoms may be a result of mast cell activation syndrome. 

 

You do not need to have all of them. I don't, but I have several flare up on me from time to time when I have had too many histamine-rich foods (still learning my level) and it makes my life miserablel.

 

I have read tons of research on this disorder and think maybe many celiacs have it but they just do not realize it.

 

Fortunately, Dr. Jess (yes, a real live MD with celiac) aka Jebby  has written an excellent discussion of this celiac-related autoimmune disorder and what can be done to diagnose and treat it.

She has several Pub Med citations and credible research for you to read and consider.

 

I follow a low histamine diet and take Quercetin, Vit C and probiotics, but some people can be prescribed medication under the care of a physician who actually knows what MCAS is. (good luck with that)

Some of you may already need to carry an Epipen and cannot figure out why you keep having anaphylaxis.

 

I am fortunate that my GI doctor was knowledgeable enough about histamine intolerance and why our guts may be lacking the enzyme DAO and he was very encouraging in that it can resolve in time (fingers crossed)! It better!! I love bacon, shellfish, chocolate, aged cheeses and wine (who doesn't!)..and those are big giant triggers.  <_< 

 

Read more here:

 

Open Original Shared Link

 

Hope this helps!

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GottaSki Mentor

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.

 

Now if we could figure out the correct protocol to control my symptoms...there is just so much unknown within the mast cell spectrum -- at least more of us are talking about it.

 

Learn all you can and then talk to your doctor and/or doctors.  My primary, celiac doctor and allergy were all receptive to testing for MCAS when I presented my symptoms and research.  Rheumy not so much, but no surprise there.

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notme Experienced

(lolz - dr. larry afrin, <inventor of the nasal spray? ) 

 

does this always co-exist with celiac disease?  or can it be an independent problem?  (i swear, my brother is in the e.r. once monthly for 'mystery allergies'  he does already carry an epi pen for Lord knows what because there is never a clear answer why he is having an allergic reaction!) 

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anti-soprano Apprentice

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

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GottaSki Mentor

(lolz - dr. larry afrin, <inventor of the nasal spray? ) 

 

does this always co-exist with celiac disease?  or can it be an independent problem?  (i swear, my brother is in the e.r. once monthly for 'mystery allergies'  he does already carry an epi pen for Lord knows what because there is never a clear answer why he is having an allergic reaction!) 

 

No, this does not always co-exist with celiac disease...but for those of us with symptoms that do not improve or with intolerances that continue to increase (both in items and severity)...it is certainly a possibility.

 

and yes, it could be the reason for mysterious "allergic" reactions - sometimes called "Idiopathic Anaphylaxis" (anaphylaxis with no known cause).

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IrishHeart Veteran

Mast cell activation syndrome (MCAS) is a condition with signs and symptoms involving the skin, gastrointestinal, cardiovascular, respiratory, and neurologic systems. It can be classified into primary, secondary, and idiopathic. Earlier proposed criteria for the diagnosis of MCAS included episodic symptoms consistent with mast cell mediator release affecting two or more organ systems with urticaria, angioedema, flushing, nausea, vomiting, diarrhea, abdominal cramping, hypotensive syncope or near syncope, tachycardia, wheezing, conjunctival injection, pruritus, and nasal stuffiness. Other criteria included a decrease in the frequency, severity, or resolution of symptoms with anti-mediator therapy including H(1) and H(2)histamine receptor antagonists, anti-leukotrienes, or mast cell stabilizers. 

 

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IrishHeart Veteran

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

 

I sincerely hope the allergist is savvy enough to recognize it for what it is.

 

There are plenty of PUB MED articles on this disorder, but busy docs do not often read them (thank heavens my GI guys does. and he also reads whatever I bring or send to him! I know, he is awesome.)

 

There are enlightened ones out there.

 

Good luck, and please tell me what happens!!

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anti-soprano Apprentice

I sincerely hope the allergist is savvy enough to recognize it for what it is.

 

There are plenty of PUB MED articles on this disorder, but busy docs do not often read them (thank heavens my GI guys does. and he also reads whatever I bring or send to him! I know, he is awesome.)

 

There are enlightened ones out there.

 

Good luck, and please tell me what happens!!

I will let you know what he says on Thursday.  I'll either be elated or pissed- both will motivate me!!  I've already been recommended to see a rock-star hematologist in Atlanta by my wonderful GI doc, so if my allergist doesn't come through, I'll be looking in that direction.  

 

I've only read a bit of what's been recommended by you and Dr. Jess so far, but interestingly enough, as a child I would break out in hives when eating strawberries or chocolate milk.  Hmmmm.  I "grew out of it" and I swear I didn't have an issue with this again until I had a serum sickness reaction to Bactrim last April.  Since then, the hives (and other symptoms) have been coming and going in waves.  Maybe it was there before the bactrim incident but I wasn't clued into the reaction?  Has anyone else had a trigger event like that? Does anyone else experience swelling of the lymph nodes along with other symptoms?  

 

Random questions: With removal of the high histamine foods, do symptoms (once you reintroduce foods) generally intensify or become more bearable?  From what I gather people have an easier time once their system has calmed down.  I am paranoid that they will get worse, even though all signs point to that not being the case :)

 

I can't tell you how many times I've been reading on this forum- present and past posts- and noticed people who are having some type of allergic reaction to foods but have negative scratch tests.  This could be affecting a great many of us.  I'm looking forward to some answers  :D

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pricklypear1971 Community Regular

For those of you suffering from mast cell skin issues, this cream may help.

Open Original Shared Link

I used it on my dh and it helped just a bit, at certain points, but sounds like it should help you more.

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IrishHeart Veteran

For those of you suffering from mast cell skin issues, this cream may help.

Open Original Shared Link

I used it on my dh and it helped just a bit, at certain points, but sounds like it should help you more.

 

 

But the way my skin, joints and muscles burn and itch?.....I would have to bathe in it.

The autoimmune response  has to   "die down inside" after a big histamine hit. I have some spots, yes, but 

it's not a pinpoint spot so to speak. It is systemic.

like heat is boiling through my blood and nerves.

I am afraid that, in my case, a topical cream would never help me.... It's really hard to describe. :mellow:

but thanks for your suggestions, I truly appreciate it. 

 

maybe it will help others with urticaria!

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IrishHeart Veteran

I will let you know what he says on Thursday.  I'll either be elated or pissed- both will motivate me!!  I've already been recommended to see a rock-star hematologist in Atlanta by my wonderful GI doc, so if my allergist doesn't come through, I'll be looking in that direction.  

 

I've only read a bit of what's been recommended by you and Dr. Jess so far, but interestingly enough, as a child I would break out in hives when eating strawberries or chocolate milk.  Hmmmm.  I "grew out of it" and I swear I didn't have an issue with this again until I had a serum sickness reaction to Bactrim last April.  Since then, the hives (and other symptoms) have been coming and going in waves.  Maybe it was there before the bactrim incident but I wasn't clued into the reaction?  Has anyone else had a trigger event like that? Does anyone else experience swelling of the lymph nodes along with other symptoms?  

 

Random questions: With removal of the high histamine foods, do symptoms (once you reintroduce foods) generally intensify or become more bearable?  From what I gather people have an easier time once their system has calmed down.  I am paranoid that they will get worse, even though all signs point to that not being the case :)

 

I can't tell you how many times I've been reading on this forum- present and past posts- and noticed people who are having some type of allergic reaction to foods but have negative scratch tests.  This could be affecting a great many of us.  I'm looking forward to some answers  :D

 

Don't be paranoid.... that's pointless.  :)

yes! I have some very , very good days!! I was really, really bad for years...I am not the same person I was just 3 years ago.

 

I had many triggers for celiac. the MCAS can occur at any time....in anyone.

 

Take heart....I went to the GYM 12 -15 X a month ---during the last year!! Before that, I could barely walk, breathe and I suffered from all kinds of symptoms. 

 

I just "pushed the envelope" the last few weeks with HH foods and I am paying for it. :huh:

 

I posted this so others could see that SOMETHING else may be causing those symptoms that you know full well are not from gluten.

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mamaw Community Regular

Irish heart

 

I could  HUG  you!!!! Sorry to say I never heard of this but  I  really think  I  have  it.. As  a  young  person many years ago  I was  very  fair, red headed, freckled gal....It  seems  I  react  to  everything  on the  planet..... I've  been  to  two  immunologist  in the  last  several  years... I've  had angio lymphatic  edema  for  nine  months, hives, anaphylactic shock from  drugs, itching  skin,  rashes, burnt redness on  face  &  neck & more.... When  I  have  reactions  it  isn't always  immediate  but  sometimes a delayed  response...Even  when I must  do  speaking  engagements I  get  Beet  red, then  anxious. My  skin  feels  burned  &  parched & looks  that  way.... Docs  said  oh you are just  a  super-sensitive  person, take  allegra.. or  Benadryl....Years  ago  another doc  said  don't  take  any histamine  containing drugs!

I  try to  eat  healthy  but  I'm sure  some of the  veggies, fruits  are causing  me  problems as well....

Where  is Dr Jess located? I  would love to find  a doc  near  me ........I  have good  days  & very bad  days....

 

I also  get  rapid heart  beat, BP  highs & lows, blood  sugar issues & so much more....I'm now  off to  research  what foods are  high  histamine.....

Sending  you a  gold  star  for  informing  us.......

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IrishHeart Veteran

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

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IrishHeart Veteran

(lolz - dr. larry afrin, <inventor of the nasal spray? ) 

 

does this always co-exist with celiac disease?  or can it be an independent problem?  (i swear, my brother is in the e.r. once monthly for 'mystery allergies'  he does already carry an epi pen for Lord knows what because there is never a clear answer why he is having an allergic reaction!) 

 

 

 

I saw that Dr.Afrin thing too in the article and giggled  (because we are both sillypants juveniles who are easily amused and see the irony)

 

But...come on now, sweets....your brother has celiac!.

you know it.  he knows it.....nobody is sick without cause IMHO

and with a sister with celiac.?? ..pls. tell me he has been tested.

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anti-soprano Apprentice

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

 

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":Open Original Shared Link  

 

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...

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GottaSki Mentor

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!): Open Original Shared Link

 

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!!!

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anti-soprano Apprentice

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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IrishHeart Veteran

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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jebby Enthusiast

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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IrishHeart Veteran

Jess,

I heart you. :)

Thanks for sharing so much with us.

G

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jebby Enthusiast

 

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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jebby Enthusiast

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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IrishHeart Veteran

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.

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GottaSki Mentor

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 ;)

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dilettantesteph Collaborator

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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      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
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    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
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