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Mast Cell Activation Syndrome (Mcas)

g f but still sick?

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130 replies to this topic

#1 IrishHeart

 
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Posted 06 January 2014 - 08:35 AM

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:

 

http://www.thepatien...ac.com/2014/01/

 

Hope this helps!


  • 3

"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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#2 GottaSki

 
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Posted 06 January 2014 - 09:29 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.

 

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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-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 :)


#3 notme!

 
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Posted 06 January 2014 - 10:02 AM

(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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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

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have a nice day :)

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#4 anti-soprano

 
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Posted 06 January 2014 - 11:39 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


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#5 GottaSki

 
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Posted 06 January 2014 - 11:54 AM

(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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-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 :)


#6 IrishHeart

 
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Posted 06 January 2014 - 01:52 PM

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. 

 

http://www.ncbi.nlm....pubmed/23179866


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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


#7 IrishHeart

 
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Posted 06 January 2014 - 01:54 PM

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!!


  • 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


#8 anti-soprano

 
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Posted 06 January 2014 - 03:39 PM

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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#9 pricklypear1971

 
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Posted 06 January 2014 - 03:44 PM

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

http://chronichives....n-cream-recipe/

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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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#10 IrishHeart

 
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Posted 06 January 2014 - 03:52 PM

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

http://chronichives....n-cream-recipe/

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!


  • 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


#11 IrishHeart

 
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Posted 06 January 2014 - 03:57 PM

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.


  • 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


#12 mamaw

 
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Posted 06 January 2014 - 04:28 PM

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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#13 IrishHeart

 
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Posted 06 January 2014 - 04:57 PM

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


  • 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


#14 IrishHeart

 
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Posted 06 January 2014 - 05:11 PM

(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.


  • 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


#15 anti-soprano

 
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Posted 06 January 2014 - 06:18 PM

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":  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.thepaleomom.com/2012/06/whys-behind-autoimmune-protocol-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...


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