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GiaK

Histamine food intolerance

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GiaK

mast cells are where histamine is regulated basically...if you want more you'll have to google it...I'm not thinking of a good, in a nutshell source of explanation at the moment. I understand it's complicated, sorry. 

 

I just found this in my email I saved...I haven't reread just now, but it might kind of explain I think:

 

http://thelowhistaminechef.com/histamine-mast-cells-and-methylation-a-mother-battles-mcad/?utm_source=feedly

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btdt

I will try but expect I will have to come back to it at a future date as this is not my best day.  Again thank you. 

peace

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btdt

Going to put what I get from you link here to guide myself and maybe others that have questions about this. 

"For anyone going through mast cell activation disorder, or histamine intolerance, you are aware that the symptoms can affect *any* of your body systems, many of them all at once. This is because histamine and other chemicals housed in the mast cells don’t stay isolated, but travel throughout the body."

"In our world, we have experienced symptoms in some body systems more dramatically than others. Skin presentations from foods, friction, contact with triggers could cause swelling, hives, dermatographia as well as other persistent skin lesions and eczema. We’ve had years with terrible stomachaches, headaches, dizziness, vomiting, leg pain, neurological symptoms and anaphylaxis. The neurological symptoms have been mostly tics or behavioral shifts from exposure to triggers, or being overloaded with chemicals he was exposed to outside our home."

The liver is important in this process... more than I can grasp just now.. I know my liver is hurting and has been a long time. 

 

 I go into more detail in this presentation  (http://www.slideshare.net/tiffanyblackden/working-with-histamine-overload-april-2013-20158082 )

") I’ve shared at Mastocytosis Society conferences, but it has a LOT to do with supporting the liver. The liver support I am talking about in particular is supporting methylation and sulfation in the body that assist in clearing chemicals, both exogenous (those entering our body from our environment) and endogenous chemicals (those made by the body).

* Histamine is housed in mast cells.

"The magic of genetics has given us a way for us to understand some deficiencies in enzymes in our family. As we’ve studied methylation as it affects mast cell activation, we’ve also come to a greater understanding of how lifestyle, diet, environmental exposures can all cause FUNCTIONAL deficiencies that can look exactly like genetic disorders.

If you are looking into genetics and enzymes related to high histamine levels in the body, you may have stumbled over some of these: MTHFR, MAO A, DAO1, ABP1, HNMT…and more! Some of those affect enzymes that are responsible for histamine degradation, and some are in the methylation cycle. These and many more genes are involved in the body’s ability to excrete chemicals from the body, INCLUDING histamine. There are some very detailed warnings for supplements, medications and more, for those of us who have some of these genetic mutations (I like the term variant better, but you’ll see mutation in many texts as you dive into the ocean of genetics) in the methylation cycle. Some of us need to have activated forms of vitamins, because our bodies can’t convert nutrients as simple as folic acid. Some of us need to avoid high sulphur foods or medications. Then, many of us need to lighten up the already heavy toxic load on our livers. Something to be aware of, though, is there is no way there can be a ONE SIZE FITS ALL solution to chronic issues like this, because our individual genetics vary SO much! For instance, Epsom salt baths are really helpful for many people (transdermal absorption of magnesium sulfate can help with a number of health issues, especially supporting sulfation, a Phase II liver detox process!), but for people with certain CBS gene mutations, they can actually drain some of the vital nutrients from the body, if overused.

Our goal in helping our little guy was to lower the histamine we were putting IN his body,reduce the amount of the chemicals that were competing for the same pathway out, and lighten up the functional bottleneck that was backing up histamine in his body. Part of the reason this was happening was his genetic hiccups in the methylation cycle inhibit some of the enzymes that act as the ‘bouncers’. The liver secretes these molecules in order to escort the chemicals you don’t want in your body anymore to the door…or the toilet, as the case may be.

Methylation does more than just excrete the bad stuff, it is also a process that turns genes on and off, supplies active enzymes that manage important metabolic functions in the body and more. The big gene that is being talked about in our methylation circles is MTHFR. These are a few resources, if you want to learn a little more about it.http://babyfoodsteps.wordpress.com/2013/03/24/snips-about-snps-mthfr/  http://www.MTHFR.net    and     http://www.mthfrsupport.com/

So I am likely sick now from taking the last drug... as I noticed a big drop in clarity when I started cefuroxime I finished 10 days worth last night and slept most of today. I think it is time I had a epson salts bath.. hate that the tub is dirty as I have been sick and others don't clean it ...dirty enough to need a chemical to clean it.. chemicals make me sick too... so it is getting soda and vinegar today ... and I will think about if it is clean enough for a bath if I get the energy to do it if not I will soak my feet. 

Thanks for the information.. It took me right back to self care... funny how that happens so much. 

peace

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btdt

I was going to see about testing MTHFR but became really ill before and used the apt for illness as they will only do one thing perv visit at docs here

need to rebook... again. 

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GiaK

For those of you who deal with food sensitivities I will share an update that I just shared with one of my histamine diet support groups...


So at this point it makes more sense for me to call the issues that remain histamine sensitivity, rather than intolerance. Seems I simply have to eat histamine containing foods appropriately and as needed and then nothing is necessarily off limits. Maybe it's also more accurate to simply call myself a sensitive...in a general sense and not limited to histamine. This particular view on the general and global issue of sensitivity has allowed me to come to understand far more than histamine in my body.


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Wildflower0214

I made the mistake of doing an elimination diet during the first few months of a CT, and it threw me into a tailspin. I have been stuck on the same 14 whole food items for two months. I react to everything I put in my mouth. I am currently dealing with insomnia about every other/third day I don't sleep at all. Everytime I try to add a food, the first thing to go is my sleep. Actually, the insomnia started directly after the start of elimination diet.

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Altostrata

Very happy to report that my histamine food intolerance is just about cleared up, after 6 months on a low-histamine diet.

 

I developed reactions to histamine-containing foods about a month after I started taking 325mg aspirin per day on the advice of my cardiologist. Over 6 months, the reactions got worse and worse. My gut ached. I was having palpitations and barely sleeping.

 

I had to figure out what was wrong, coincidentally I had read about Gia's experience with histamine intolerance -- the symptoms all fit.

 

Figuring the aspirin had injured my gut (very common with daily aspirin), I went on a gut-healing and low-histamine regimen. I tried and had to discard lots of supplements. What I settled on is described below.

 

Gut healing protocol

Quercetin 650mg 2x day, glutamine 1000mg 2x day, 1/2 tbsp black seed oil (nigella sativa) once a day, DGL licorice as needed, turmeric and ginger as needed.

 

Probiotics: Bifidobacteria (b. infantis, etc.), L. plantarum (Goodbelly).

 

Honey, coconut oil, and olive oil.

 

Other supps: Fish oil, vit E, betacarotene, vit D (6000IU), magnesium glycinate, glycine, vitamin C, taurine. Occasional DAOsin, digestive enzymes.

 

Drugs: 0.10mg ketotifen (mast cell stabiiizer and H2 blocker) per day.

 

I bought most of my supplements from Swanson's. My philosophy is: Spend as little as possible to try a supplement, you'll lose less when you have to give up on it. (Swanson's takes returns, too.)

 

Low-histamine diet

I used this food list http://www.food-intolerance-network.com/food-intolerances/histamine-intolerance/histamine-intolerance-hit-tolerated-foods-list.htmlplus inspiration from The Low HIstamine Chef (I'm not much of a cook, though).

 

I ate the following organic, wild, or free-range foods:

  • Proteins: Chicken, turkey, lamb, frozen-at-sea cod.
  • Vegetables: Lots of cooked green leafies excluding spinach. Carrots, parsnips. Acorn squash, zucchini. Onions and garlic.
  • Fruits: Apples, blueberries, Asian pears, pomegranates.
  • Complex carbs: Rice, quinoa, mlllet, oats, lentils, split peas, potato, sweet potato; later, corn and wheat.
  • Oils: Coconut oil, olive oil, grass-fed butter.
  • Honey

I started this diet in early July. By November, I noticed I was reacting less to foods. I started adding new foods in January and am now eating 80% of my usual diet. I'm yet to add cured meats, aged cheeses, eggs, and dairy.

 

I tried many supplements and had to give up on them because of reactions. I could not tolerate most probiotics. Used DGL (H2 blocker, reduces stomach acid) more often at the beginning. After 5 months, reduced quercitin to once a day because it gave me acid reflux in the evening. Reduced glutamine to once a day. Just reduced black seed oil to 500mg liquid capsule per day (Swanson's).

 

I've started eating yogurt, but it was difficult. When you don't eat a food group like dairy, you stop making enzymes to digest it. In the case of dairy, that's lactase. I found I needed to take lactase supplements to eat a half-teaspoon of yogurt. I did this every day for a week, and now it seems I can eat yogurt.

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Wildflower0214

Very happy to report that my histamine food intolerance is just about cleared up, after 6 months on a low-histamine diet.

 

I developed reactions to histamine-containing foods about a month after I started taking 325mg aspirin per day on the advice of my cardiologist. Over 6 months, the reactions got worse and worse. My gut ached. I was having palpitations and barely sleeping.

 

I had to figure out what was wrong, coincidentally I had read about Gia's experience with histamine intolerance -- the symptoms all fit.

 

Figuring the aspirin had injured my gut (very common with daily aspirin), I went on a gut-healing and low-histamine regimen. I tried and had to discard lots of supplements. What I settled on is described below.

 

Gut healing protocol

Quercetin 650mg 2x day, glutamine 1000mg 2x day, 1/2 tbsp black seed oil (nigella sativa) once a day, DGL licorice as needed, turmeric and ginger as needed.

 

Probiotics: Bifidobacteria (b. infantis, etc.), L. plantarum (Goodbelly).

 

Honey, coconut oil, and olive oil.

 

Other supps: Fish oil, vit E, betacarotene, vit D (6000IU), magnesium glycinate, glycine, vitamin C, taurine. Occasional DAOsin, digestive enzymes.

 

Drugs: 0.10mg ketotifen (mast cell stabiiizer and H2 blocker) per day.

 

I bought most of my supplements from Swanson's. My philosophy is: Spend as little as possible to try a supplement, you'll lose less when you have to give up on it. (Swanson's takes returns, too.)

 

Low-histamine diet

I used this food list http://www.food-intolerance-network.com/food-intolerances/histamine-intolerance/histamine-intolerance-hit-tolerated-foods-list.htmlplus inspiration from The Low HIstamine Chef (I'm not much of a cook, though).

 

I ate the following organic, wild, or free-range foods:

  • Proteins: Chicken, turkey, lamb, frozen-at-sea cod.
  • Vegetables: Lots of cooked green leafies excluding spinach. Carrots, parsnips. Acorn squash, zucchini. Onions and garlic.
  • Fruits: Apples, blueberries, Asian pears, pomegranates.
  • Complex carbs: Rice, quinoa, mlllet, oats, lentils, split peas, potato, sweet potato; later, corn and wheat.
  • Oils: Coconut oil, olive oil, grass-fed butter.
  • Honey
I started this diet in early July. By November, I noticed I was reacting less to foods. I started adding new foods in January and am now eating 80% of my usual diet. I'm yet to add cured meats, aged cheeses, eggs, and dairy.

 

I tried many supplements and had to give up on them because of reactions. I could not tolerate most probiotics. Used DGL (H2 blocker, reduces stomach acid) more often at the beginning. After 5 months, reduced quercitin to once a day because it gave me acid reflux in the evening. Reduced glutamine to once a day. Just reduced black seed oil to 500mg liquid capsule per day (Swanson's).

 

I've started eating yogurt, but it was difficult. When you don't eat a food group like dairy, you stop making enzymes to digest it. In the case of dairy, that's lactase. I found I needed to take lactase supplements to eat a half-teaspoon of yogurt. I did this every day for a week, and now it seems I can eat yogurt.

Thank you!!! I have only been able to eat like 15 foods since October. Adding foods has been very difficult. And, I know I need to do something similar to what you did when I get well enough to tolerate anything new.

 

Thx again for such detailed info.

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freespirit

Alto,

 

You posted this a few months ago..so just wondering where you are now regarding your diet. Are you able to eat more or less normally now?  Also, how did you go about reintroducing foods you weren't able to tolerate before?

 

I found I was able to eat some things all along that are higher histamine, but not others on the safe list. I do challenge myself sometimes, by trying different foods...there are times when eating carefully that I still get a histamine response, but have no idea what I've reacted to.

 

Are you still taking medications related to this or off those as well? I know everyone is different in all of this. There are many things I don't miss from my previous diet (wheat and dairy), but spices, tomatoes, avocados I really miss. One night I had a dream about tomato sauce...

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freespirit

I just wanted to add another resource I've just found on histamine intolerance. I haven't read all the way through, so can't necessarily recommend..but it's someone who also took AD and ended up with mast cell issues. Her list of high histamine foods is different than some others I've seen..which as in everything, leads me to think so much is individual in this.

 

http://alisonvickery.com.au/

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GiaK

this is my latest update on my healing process...it's histamine related but not totally explicit because it was originally written for another audience...still there are links to more info on histamine too.

 

I wrote most of this post for The Receiving Project group which I posted about a couple of days ago. It’s got dietary info if you’re into that sort of thing. I’m healing and food continues to be a phenomenally important part of that gestalt.  Healing is many things synergistically coming together in my experience. And that kaleidoscope of things is likely to be different for every person. I’m sharing the post mostly as I wrote it for The Receiving Project, but I’ve made a few edits for the purposes of this blog.
 

Astonishing loveliness. This is a weird gift and may not mean much to most of you but it’s so HUGE and FUNDAMENTAL to me that I’m going to share it anyway. Yesterday afternoon I went to my amazing healing chiropractor man and he gave me a suggestion. B12. I’ve been trying to add B vitamins to my diet any way I can for a few years because I know I need them but my chronically ill body wouldn’t tolerate them. I’ve also been getting slowly better and better over that time as I’ve done other things my body could tolerate. It’s been a journey about learning to listen. So I’ve been doing other things to strengthen my nervous system in general (the nervous system needs B12 and my nervous system is shot to hell from a chemical brain injury) so when this doctor suggested B12 once again yesterday, I thought that perhaps it was time to, once again, try a natural whole food that holds a lot of B12…I know my nervous system well enough to not start with a vitamin in a pill or capsule, generally synthetic and full of other stuff. Anyway…long story short I ate some liver…that is what my body asked for after I considered my options and sat in contemplation.
 

I wrote the below for one of my healing groups last night where we are healing similar conditions:
 

“OMG and WOWEE…I’ve been wanting to tolerate B12 forever…knowing I need it but not tolerating supplements or liver. I finally got an (internal) go on eating liver again…now that I’m eating it, it’s like I’ve been shot up with a wonder substance…calming and energizing all at once…a thing of beauty. Last time I ate liver I got horrible histamine reactions…totally different now…but oh, wow…I’m so glad I don’t limit myself to plant foods because I’ve tried every plant source and I’ve tried supplements and nothing was tolerated. This is clearly taking me to the next level. My body experiences it as though it were pure LOVE.

you know liver is the perfect food for optimizing methylation it seems…it’s got lots of b6, b12 and folate…natures methylator.

I am in awe. My body is clearly a temple and it has guided me every step of the way…astonishing and lovely. And while my body ultimately knows — it’s needed the help of everyone here and so many other places too in order that I might learn enough to hear what it has always been saying. I am so grateful.”


The methylation issue is tied into the histamine issue that I’ve written a lot about. I’m not making explicit links to it in this post since it wasn’t written for this blog in mind initially. If you want more information please visit: Histamine intolerance round-up
 

Anyway, the gift is the man (chiropractor) who told me it was time to consider B12 once again. And it’s huge…perhaps some of you will understand just how huge…I don’t know. I am on a journey back from having been bedridden for 2 years…homebound for 5 and now still piecing wellness together. I’ve had to eat liver every 4 hours since I introduced it yesterday and when I do I continue to feel amazing. My body is quaking with joy. It’s utterly indescribable.


Again…this is weird but I’m sharing it anyway because this is my life and it’s wondrous and weird…this is my body and it’s awesomely connected to everything and it tells me what I need in every moment as I heal….it’s been doing that from the beginning of this trip into the depths of illness.


Also it’s been a practice in humility because my egoic self would prefer to not eat animals ever, but the wisdom of my body shows me that I cannot control everything and that I am deeply intertwined in creation. I take comfort in the fact that all of nature eats itself and I’m blessed with a consciousness that can recognize that I am part of this web of life, complicated and lovely as it is.
 

Read also:
 


Eating wholesome whole real food is important for body/mind/spirit health and well-being. I’ve written a lot about my adventure with diet and healing here:  Nutrition and gut health, Mental health and diet
 

And you can find more Foodie posts and recipes here.

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LoveandLight

Wow that's amazing!

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GiaK

oh. amazing? why? I'm not sure what you're responding to.  :)

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LoveandLight

Hi Giak

 

The piece on liver and B12 :)

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GiaK

oh...that was from a couple of weeks ago :-) 

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GiaK

today's post is new info...I didn't cut and paste here but it's actually more relevant to the subject here...I'll cut and paste below: http://wp.me/p5nnb-cjS

 

Food sensitivities, histamine and mast cell activation syndrome

MAY 27, 2015

Note: This may be of interest to you if you have protracted psychiatric drug withdrawal issues, if you have autoimmune issues, and also other chronic illnesses like CFS and/or fibromyalgia
 

My food sensitivities have continued. I tend to learn a whole lot by paying attention to them and they oddly allow me access to parts of the psyche for healing when I sit with them in meditation. It’s almost as though there is a psychedelic aspect to my experience with them. I am not alone in this. I’ve found others who have this experience too. They are difficult to live with and I continue to work with them from as many different windows as I can. None of these different lenses on this broad systemic phenomena are absolute or definitive in and of themselves. Such is the path of learning to deal with the body/mind/spirit in holistic fashion.
 

In western medicine they are best explained and understood as a form of mast cell dysregulation, I’ve found. I’ve not ever gone into that in any explicit fashion on this blog because I’ve tried to keep it simple and so I’ve talked about histamine intolerance mostly, which is often a manifestation of mast cell dysregulation. Because I’ve been so tragically wounded, and thus traumatized, by western medical practitioners I’ve not been able to easily work with doctors from that system and have not found a competent doctor who understands mast cell dysregulation all that profoundly, in any case, so what I know I’ve largely learned from my fellow sufferers who’ve done all the collection of data from their own bodies with practitioners in their lives. We compare notes on health forums.
 

I am hugely indebted to the networking around Yasmina Ykelenstam, The Low Histamine Chef. With her and 37 other special women who’ve been following her work since the beginning I’ve been supported in ways for which I am forever grateful. Many of us have been able to piece together wellness in this way. We’re all very different and so it’s been an incredible experience of synergistic learning.
 

Some of my long-time friends in the chronic illness circles, in general, too have taught me critically important things that have helped my healing process. The truth is I wouldn’t have healed as much as I’ve healed without the input of folks gaining information from western medicine. It’s been a vital part of my process even while I’ve largely avoided directly subjecting myself to the machinations of the system on a practical level.
 

So, the above is basically an introduction to a video I’m going to share which features an unusually sensitive and empathic western medicine doctor, Dr. Anne Maitland whose specialty is mast cell activation syndrome. That is another way of calling what I prefer to simply call mast cell dysregulation. I’m sharing this video simply because I have, indeed, been remiss about passing on this information and I think it may be helpful to many of you.

 

 

This may be of interest to you if you have protracted psychiatric drug withdrawal issues, if you have autoimmune issues, and also other chronic illnesses like CFS and/or fibromyalgia. All these issues have a lot of crossover once they become chronic and longterm. I’ve written about these crossovers from yet another window here: Protracted psychiatric drug withdrawal syndrome, chronic illness, CFS, Fibromyalgia. Yeah, they all have things in common. 
 

So, this video is long and I’ve not actually watched the whole thing. She’s a good speaker and the beginning of the talk very expertly talks about the different sorts of manifestations of sensitivities us folks are dealing with and the fact that we are often labeled hypochondriac or eating disordered. She’s good. She’s also not explicitly talking about histamine intolerance because it’s assumed. Histamine intolerance is part of the picture she speaks of. I think even if one doesn’t listen to the whole thing it may be helpful to a lot of the readers of this blog — not as an end, but as a beginning to further research.

 

https://youtu.be/ktFdr-9rpIM

 

<iframe width="560" height="315" src="https://www.youtube.com/embed/ktFdr-9rpIM"frameborder="0" allowfullscreen></iframe>
 

These issues and others became extreme for me upon withdrawal from a large cocktail of psychiatric drugs, but histamine intolerance and thus mast cell issues unrecognized can also lead to being drugged with psychiatric pharmaceuticals to begin with, from what I’ve seen, so anyone taking these drugs might want to rule out this condition. Being that a lot of neuroleptics and benzos and it seems SSRIs too all have significant anti-histamine properties this may impact a good number of folks. Since first starting to write about this I’ve heard from many readers who’ve found help in understanding their circumstances with this information.
 

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Adagiooo

Thank you for posting this GiaK. I have terrible, terrible food intolerances. I hope I can find something in this topic and this article that will help me. I'm so tired and demoralized right now I just can't read anything else about withdrawal...or anything else for that matter.

 

I hope you are enjoying life as you continue to heal and be in the real world. You are an inspiration to me but I believe much stronger.

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GiaK

Alison does good work too...and that's a good article, thanks.

 

I've not been able to supplement with glutathione supps yet, like she has...but her suggestion for food sources are very good and working towards the capacity to supplement is also a very good idea.

 

thanks again. 

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btdt

 

Nonimmunologic Histamine Releasers - and - Other Degranulation Triggers2
Polymers Dextran Compound 48/80 Calcium ionophore A23187 Bacterial Toxins Snake venoms Biologic polypeptides Ascaris species Jellyfish Portuguese man-of-war Spines & hairs of Caterpillars Nettles Moths Foods Shellfish, Any fish not fresh Strawberries Egg Whites Tomatoe Nuts (peanuts, walnuts etc.) **Download our diet guideline. Chemicals & Drugs Aspirin Alcohol Opiates (Codeine,Morphine,Percocet/Oxy etc) NSAIDs (Non-steroidal anti-inflammatories: Advil,Motrin,etc) Polymyxin B sulfate Colistin sulfate Thiamine hydrochloride Tyramine Trimethaphan and Trimetaphan Tubocurarine chloride Quinine sulfate Papaverine Dipyridamole (Persantine) Iodine based radiographic dyes Scopolamine hydrochloride Gallamine triethiodide Neuromuscular blocking agents (all):eg.,
  • Dexamethonium
  • Gallamine triethiodide
Dextromethorphan (cough suppressant) Stilbamadine isethionate Chlortetracycline bisulfate Amphetamines Hydralazine hydrochloride Tolazoline hydrochloride Cinnamaldehyde Cinnamic acid Benzoic acid Sodium benzoate Fungal infection drugs Local anesthestics: lidocaine,etc.(any amino amide-type)
  • Perfume, Man-made materials, Scented products, Chemicals
  • High in Histamine or Tyramine, Gluten, Soy, Salicylates
Physical Agents Dermatographia (Darier's Sign) Pressure Cold Heat Cholinergic agents
  • Exercise, hot baths/showers, fever, occlusive dressings,

    eating spicy foods, emotional stress

Solar light waves Water Vibration Insect bites (Wasp, Hornet, Bee, Mosquito) Infections Inhalants Scents/Odors, Smoke (wood burning, cigarette, marijuana) Latex Foods (**Download our diet guideline.) Cosmetics/Creams containing salicylates Preservatives, Additives, Dyes, Artificial flavours/colouring Vasculitis Internal diseases

 

Contact Agent Triggers of Skin Reactions2
Acrylic monomer Aminothiazole Ammonia Animal Dander Cat and Dog Saliva Arthropods Benzophenone Benzoyl peroxide Carrots Castor beans Cephalosporins Cetyl alcohol Chlorpromazine Cobalt chloride Cod liver oil Diethyltoluamide Estrogenic creams Exotic woods Flour Formaldehyde Hair sprays Horse serum Lindane Monoamylamine Nail polish Penicillin Perfumes Phenylmercuric propionate Platinum salts Potatoes Silk Sodium sulfide Spices Stearyl alcohol Streptomycin Sulfur dioxide Taliphatic polyamide Tetanus antitoxin Wheat Wool

http://www.mastocytosis.ca/symptoms.htm

 

I have been taking Thiamine... B1 100mg a day for a wk. Along with Phosphatidyl Choline.. trying to treat chemical sensitivities .. multiple chemical sensitivities I found it he idea on a MCS web site.  This has been a major problem for me so I took a chance and today find  this post about thiamine increases histamine. 

 

I had a hint my memory was working better when I had to copy some numbers today and it went way better then normal as I could recall a few numbers at a time correctly most of the time this is new for me. I thought it was the B1 helping... now I find this. 

 

I was checking on Thiamine on this site to see if anyone had posted about a Thiamine deficiency psychosis.. as I just learned there was such a thing to day... I guess if the alternative of not taking thiamine supplements for some people is a psychosis then it is worth a bit of histamine... 

 

I would love to have some input on this if anyone has any ideas as to the relationship of thiamine to psychosis and or histamine increase either... as I am blowing in the wind here just now not knowing what to think. 

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Wildflower0214

Thanks everyone, for posting such good and informative material. I have POTS, which has recently been reclassified as an autoimmune disease. I have had it since I was about 13 and ended up drugged when I was 23. I can now look back and see how mast cell issues def played a huge part in all of this. I have done a bit of preliminary research and have found that there seem to be a lot of people who have POTS who have Mast Cell Activation as well. I can't say I'm surprised.

 

I have been stuck on what was 15, but now has been limited to 12 foods for 9 months. I have tried to add food by small spoonfuls, but have not had success.

 

I honestly don't know where to go from here.

 

But, I would like to point out that those of us with mast cell issues are dealing with 2 hurdles, not one. In WD, many people who do not have mast cell problems are sensitive to food, probably because of the nutrient content. Those of us with the mast cell component as well, have the same issues as those in WD with nutrient sensitivity, but it is compounded by histimine issues.

 

For instance, I have heard many people who have intolerances say that if they eat a food too frequently, they have a problem. But, I have found that while that was true for me before WD, during this CNS mayhem....if I don't eat a food regularly, I start to react to it. If I go a week and don't eat somethhing, the next time I do eat it is generally a disaster.

 

So all of this becomes very very very confusing.

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GiaK

one step at a time...we all unravel these issues in our own ways it seems...

 

I wanted to share that understanding this all as a mitochondrial issue has become equally important...I needed to get enough wellbeing back to understand just how important...

 

I wrote a bit about that recently here:
 

Psychiatric drugs and mitochondrial damage

http://beyondmeds.com/2015/07/15/psychiatric-drugs-and-mitochondrial-damage/

 

best to you...it does all come together as we continue to pay attention. 

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Wildflower0214

Thanks Gia.

 

I am learning that getting better is a "moving target" as Alto said in an earlier post.

 

If I am honest, I don't know what the heck I am doing, but I keep learning a little bit at a time.

 

I just want to have enough variety in my diet to be healthy.

 

I will figure it out... One step at a time.

 

Thanks for all of your posts and your blog. They have both really helped me. The only reason I even knew about AD WD is from finding your blog after literally combing the web for weeks while I felt like I was losing my mind. In a way, the information you posted there saved me. The validation I felt when I found beyondmeds was the beginning of healing for me. Thank you.

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GiaK

that's just it...none of us know what we're doing and the truth is NO ONE knows what they're doing...we get to learn it in a really big way, which in the end will serve us well...this stage of the process is a bit gnarly. 

 

This is a post from a couple of days ago on exactly this topic:

 

 

Not knowing and living with confidence

 

The more we engage with our lives without requiring reassurance, the more we realize that this is already the case at all times. We can never have objective confirmation that we are making the right choice. We don’t know who we are, what happens when we die, how to have the best relationship or be the best parents possible. No one has ever been able to prove just what it means to live the best life possible or how to do so. Basically, we’re just falling through space, making it up as we go.
 

We can however choose to act and live with a confidence that has no objective justification or we can choose to act and live with hesitation and self doubt-which as it turns out has no objective justification either.
 

We may find that as we practice showing up without apology, a deeper confidence is cultivated. An attitude that arises out of not knowing but that manifests as fully embodied presence. We know that we’re just winging it, that we will continually make mistakes, but we learn that this will be true whether we do so with confidence or with self doubt. We learn that we really only have our own unique version of being human to offer the world.
 

– Bruce Tift

 

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Wildflower0214

 

that's just it...none of us know what we're doing and the truth is NO ONE knows what they're doing...we get to learn it in a really big way, which in the end will serve us well...this stage of the process is a bit gnarly.

 

This is a post from a couple of days ago on exactly this topic:

 

Not knowing and living with confidence

 

The more we engage with our lives without requiring reassurance, the more we realize that this is already the case at all times. We can never have objective confirmation that we are making the right choice. We don’t know who we are, what happens when we die, how to have the best relationship or be the best parents possible. No one has ever been able to prove just what it means to live the best life possible or how to do so. Basically, we’re just falling through space, making it up as we go.

We can however choose to act and live with a confidence that has no objective justification or we can choose to act and live with hesitation and self doubt-which as it turns out has no objective justification either.

We may find that as we practice showing up without apology, a deeper confidence is cultivated. An attitude that arises out of not knowing but that manifests as fully embodied presence. We know that we’re just winging it, that we will continually make mistakes, but we learn that this will be true whether we do so with confidence or with self doubt. We learn that we really only have our own unique version of being human to offer the world.

Bruce Tift

 

"Gnarly" is a pretty appropriate word to describe this. I feel like I figure it out for a week or so, then the symptoms shift, the baseline changes, blah blah blah... And I'm back in the dark again fumbling around trying to find the doorknob. And, if I'm honest, sometimes I just sit down in the middle of the darkness and sob. Then, I get back up again.

 

It's helpful to know there are those who have gone before and have found their way.

 

That excerpt resonated with me in that so much in life is uncertain. I suppose getting accustomed to it is better than fighting it. Easier said than done...

 

And, falling through empty space... That is exactly how it feels...

 

Much to learn... One foot in front of the other.

 

Thanks you for the thoughtful response.

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GiaK

wildflower...I wrote this for one of my dietary groups recently...I'm sharing so you can see that I too am continuing to learn and grow and sometimes also fall down...

 

Oh my. I really thought I'd pretty much beaten the reactions to food. After months of adding new foods pretty much all the time with little thought recently and never having to do much more than meditate for a bit or something simple like that to smooth out whatever issue might be I decided to add eggs. Eggs were one of my worst reactions. I was totally confident that all would be well since I've added a couple of foods that were almost as bad with no problem. 
 

I've been supplementing with phospholipids of all sorts to heal mitochondrial damage and it's been going really well so I figured I might was well try to get some of them from eggs...Lecithin is a vitally important source of choline and eggs are high in lecithin. So...I ate eggs in complete confidence that it would be no problem and in stead I've had the histamine reaction of the year. Anyway. I am bummed but know how to find my way out and will get back up and do that. For the time being though I'm fried...no sleep last night and still totally out of my body with weird terror **** I've not felt to this degree in a long while. blah. I really need to sleep. I'm strung out.

 

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Wildflower0214

Oh!! You have no idea how timely this is. I just had a run in with an egg a few weeks ago. Lol I was so disappointed. I had eaten them before during this, and lost them a few months ago in a wave. I ate it confidently, I was convinced it would be fine. Not so.

 

Thanks for the post. That has to be frustrating for you, being as far out from the WD process as you are to have a single food item propel you into symptomatic chaos, even if temporarily.

 

Thank you for sharing this. I really do appreciate it.

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Toulouse

I don't know if I'm gluten intolerant now or histamine intolerant since my WD. Or if the Paxil WD caused my current situation or if it's coincidence. Got really flushy or itchy this past week, accompanied by my throat feeling tight. Which made me visit the er. (No signs of Anaphylaxis. The doc suggested I see a Rheumatologist since my allergist came up empty thus far. I'm hoping this is all WD related.

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Altostrata

If you go on a low histamine diet and your symptoms go away, you have histamine intolerance. Generally, this means you need to help your gut heal from irritation or infection.

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Toulouse

If you go on a low histamine diet and your symptoms go away, you have histamine intolerance. Generally, this means you need to help your gut heal from irritation or infection.

I've been doing a little of both, with varying degress of improvement.  I need to pick a lane for a week or two and compare. Right now I'm doing Gluten free only since Sunday. My symptoms have improved mostly, though just tonight getting a couple itchy spots in an otherwise symptom free 3 days.  Nothing too bad, but frustrating I'm itching at all tbh. 

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NoMeaning25

@GiaK

Would the anti histamine diet help with sinus issues? I have severe hayfever - itchy eyes, ears, closed chest, sneezing and the worst is closed clogged up ears that are full of pressure constantly. Ive had the above for 2 months now and going insane because im unable to take anti histamines. I took 60mg Allegra and the side effects were not worth it and it did not help. Its also ottotoxic so i dont want any more exposure as my ears are already messed up from antidepressant withdrawal. I have very loud intermittent tinitus

Do you think the diet would help with the above? Im suffering quite badly.

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GiaK

try it. I don't know...it very possibly could. 

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