Low Histamine Diet

PLEASE READ THIS PARAGRAPH FIRST!

This blog covers my personal journey with mast cell disease and histamine intolerance.  I’m not advocating that you should follow the diet I follow, or that my diet is perfectly low histamine.  I tried a basic low histamine diet, based on information from the International Chronic Urticaria Society, because I was having anaphylactic reactions every time I ate.  Only 4 months into the diet these reactions no longer happened.  This particular version of a low histamine diet works for me – it may not be right for you.  There is much confusion about which foods contain histamine, block DAO or are histamine liberators: please read my blog post on the Truth About Food Lists for my personal thoughts on the accuracy of low histamine food lists and keep reading below for a more thorough explanation.   You might also like to read my post To Eat or Not to Eat for more detailed reasons on why I eat the foods that I do.

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A large part of treating mast cell disease, especially if you have significant Gastro-intestinal issues or have reactions after eating, is to follow a low histamine diet.  It’s an absolute mine-field.  There appears to be very few research papers or clinical trials into the histamine content in food, although I did find a link to the histamine levels in a small sample of foods on the Food Intolerance Network website.  Added to that, the diets purported online can’t agree on even the most basic of food groups: some say wheat is fine so long as it’s unbleached flour and yeast free, some say no wheat.  Some say bananas are fine, others say no bananas.  You get the drift.

The Food Intolerance Network did a study on the reactions of over 800 histamine intolerant patients to various foods, and their results can be found here.  As it states quite clearly, each individual will be able to tolerate different foods depending on where they are in the treatment of their histamine intolerance.   Non-tolerated, and tolerated foods, will vary enormously from person to person depending on their individual reactions and from food to food, depending on how it’s been picked, stored and transported.  It really is a game of trial and error, and there are only a very small list of foods that everyone with histamine issues reacts badly to (red wine, beer, tinned tuna, tomatoes, strawberries, oranges).

Of course, it’s more complicated than just the histamine content of food.  There are also foods which are purported to block the DAO enzyme needed to ‘mop up’ histamine (eg. tea), and foods which don’t contain histamine per se but are purported to liberate histamine already in the body (eg. cocoa, nuts and some fruits).  I use the word “purported” deliberately, as I’m unclear how these conclusions have been reached.

There is also the fact that you’re cutting out large groups of foods but not replacing them with much of anything.  If you’ve had mast cell issues for some years your body is probably going to be in a state of utter disarray.  It needs to be slowly built back up, and good nutrition is the key.  I personally don’t have the time or energy to become obsessed with my diet, but I do try to buy organically wherever possible and include fresh fruit and vegetable juices.  Juicing from scratch is a total faff if I’m honest, is expensive (you need a lot of produce for a small amount of juice), it assumes you already have a good juicer, and many juices are a bit like drinking medicine (!), but it’s a great way to feed your body easy to digest nutrients without having to think about complicated recipes.  There are some juicing recipes on my Recipe page, or if you’d like to look into this further I highly recommend The Raw Energy Bible by Leslie Kenton.  Not only are the juicing recipes in this book adaptable for a low histamine diet, but so are many of her raw food recipes.

I started off following a quite strict low-histamine diet and found I was both miserable and starving half to death.  So I relaxed, and just cut out the worst offenders, however I’m aware this won’t be feasible for some people who will have to stick to a very rigid diet in order to control their symptoms.

Below is the diet I’m (loosely) following (taken from the International Chronic Urticaria Society website):  This diet excludes all:

  • foods with naturally high levels of histamine
  • fermented food
  • artificial food colouring, especially tartrazine
  • benzoates including food sources of benzoates, benzoic acid and sodium benzoate
  • butylated hydroxyanisole (BHA) and butylated hydoxytoluene (BHT)

Items marked with an * are considered controversial and excluded, or included, by other versions of a low histamine diet.

Most of all, remember the List below is just a guide.  No definitive list of low histamine foods exists anywhere in the world!


THE LOW HISTAMINE FOOD LIST

Milk & Dairy

Allowed:

  • Plain milk
  • Ricotta cheese
  • Mascarpone cheese
  • Quark (similar to cottage cheese though thinner and made without rennet so always vegetarian friendly).
  • Butter
  • Cream (I also include Soured Cream, which is excluded by some of the diets).
  • Ice cream with allowed ingredients.

Restricted:

  • All other cheese, particularly hard mature cheese like mature Cheddar, or aged cheese like Stilton
  • *Cottage cheese
  • *Yogurt
  • Buttermilk
  • All pre-prepared dairy products made with restricted ingredients.

Eggs

Allowed:

  • All plain, cooked egg.

Restricted:

  • Raw egg white (found in some eggnog, hollandaise sauce and milkshakes).

Breads & Cereals

Allowed:

  • Any pure, unbleached grain or flour (note: all flour in the UK is unbleached by law).
  • Any plain, fresh bread, buns, biscuits, pizza dough with allowed ingredients.
  • Home-made or purchased baked cookies, pies etc. made with allowed ingredients.
  • Breakfast cereals made with allowed foods including all plain grains, plain oats and oatmeal, plain cream of wheat, puffed rice and wheat.
  • Plain crackers with allowed ingredients.
  • Plain pasta.

Restricted:

Products made with:

  • Artificial colours
  • Artificial flavours
  • Bleached flour (not available in the UK)
  • Cheese
  • Chocolate
  • Cinnamon
  • Cloves
  • Cocoa
  • Margarine
  • Preservatives
  • Restricted fruits
  • Some jams (known as jelly in the States)
  • Any food made with, or cooked in, oils with hydrolyzed lecithin, BHA or BHT.
  • Commercial pie, pastry and fillings.
  • Baking mixes
  • Dry dessert mixes
  • Pre-packaged rice and pasta ready meals.

Vegetables

Allowed:

  • All pure, fresh and frozen vegetables except those listed in the restricted group.

Restricted:

  • Aubergiene (also known as Eggplant)
  • Pumpkin
  • Sauerkraut
  • Spinach
  • Tomatoes and all tomato products including puree and passata.
  • Soy and all soy products, including soya lecithin.

Fruits

Allowed:

  • Apple
  • *Banana
  • Cantaloupe melon
  • Figs
  • *Grapes
  • Honeydew melon
  • *Lime
  • *Lemon
  • Mango
  • Water melon
  • *Pear
  • Rhubarb
  • *Papaya (pawpaw)
  • *Gooseberry.
  • *Blackberry.
  • *Blueberry.
  • Coconut
  • Fruit dishes made with allowed ingredients.

Restricted:

  • Strawberries
  • Raspberries
  • Raisins, currants & sultanas
  • Plums
  • Prunes
  • Pineapple
  • Peach
  • Orange
  • Nectarine
  • Loganberry
  • Dates
  • Cranberry
  • Cherry
  • Apricot

Meat, Fish & Poultry

Allowed:

  • All pure, freshly cooked meat or poultry.
  • Any freshly caught, gutted, and cooked fish within 30 minutes of being caught (which realistically means no fish, unless you are a fisherman’s wife!)

Restricted:

  • All leftover cooked meats.
  • All processed meats, eg salami, hot dogs.
  • All fish (except those on the allowed list) and seafood.

Legumes

Allowed:

  • All plain legumes, except those on the restricted list.
  • *Pure peanut butter.

Restricted:

  • Soy beans, including miso and tofu.
  • Kidney beans (also known as red beans)

Nuts & Seeds

Allowed:

  • All plain nuts and seeds.

Restricted:

  • *This diet does not restrict nuts of any kind, but other diets restrict cashew nuts and sunflower seeds, whilst yet other diets restrict nuts of all varieties.

Fats & Oils

Allowed:

  • Butter
  • Pure vegetable oil.
  • Home-made salad dressings with allowed ingredients.
  • Lard & meat drippings.
  • Home-made gravies.

Restricted:

  • All fats & oils with colour and/or preservatives.
  • Hydroloyzed lecithin.
  • Margarine.
  • Pre-prepared salad dressings with restricted ingredients.
  • Pre-prepared gravies.

Spices & Herbs

Allowed:

  • All fresh, frozen or dried herbs and spices except those on the restricted list.

Restricted:

  • Anise
  • Cinnamon
  • Cloves
  • Curry powder
  • Paprika
  • Nutmeg
  • Seasoning packets with restricted ingredients.
  • Foods labelled “with spices”.

Sweeteners

Allowed:

  • Sugar
  • Honey
  • Molasses
  • Treacle
  • Maple syrup
  • Corn syrup
  • Icing sugar
  • Pure jams, marmalades, conserves made with allowed ingredients.
  • Plain artificial sweeteners.
  • Home-made sweets made with allowed ingredients.

Restricted:

  • Flavoured syrups.
  • Prepared dessert fillings.
  • Prepared icings, frostings.
  • Spreads with restricted ingredients.
  • Cake decorations.
  • Commercial sweets (candies).

Miscellaneous

Allowed:

  • Baking powder.
  • Baking soda.
  • Cream of tartar.
  • Plain gelatin.
  • Home-made relishes with allowed ingredients.

Restricted:

  • Yeast and all yeast products including marmite, vegemite & bovril.
  • All chocolate and cocoa.
  • Flavoured gelatin (ie jelly/jello).
  • Mincemeat.
  • Prepared relishes and olives.
  • Vinegar and anything pickled in vinegar.
  • Most commercial salad dressings.
  • *Quorn is restricted on some lists (I assume because it’s so commercially prepared) but other lists don’t mention it at all. I eat some Quorn (like the mince, as it only has 4 ingredients) but not other Quorn products (like the burgers or sausages) because they contain many artificial ingredients some of which, like yeast, are restricted.

Beverages

Allowed:

  • Plain milk.
  • Pure juices of allowed fruits and vegetables.
  • Plain and carbonated mineral water.
  • Coffee.
  • Alcohol: plain *vodka, *gin, *white rum.

Restricted:

  • Flavoured milks.
  • Fruit juices and cocktails made with restricted ingredients.
  • All other carbonated drinks.
  • All teas.
  • All drinks with “flavour” or “spices”.
  • All alcohol unless on the allowed list, including beer, cider, wine.
  • Non-alcoholic beer and wines.

If you want a stricter low histamine diet, try the Mastocytosis Society of Canada’s list of allowed & restricted foods, although you’ll soon notice that they allow foods my diet does not and visca versa!

Further Notes

Acetic Acid:  I’m really conflicted about this ingredient.  On the one hand it is, I think (!), made from a process of fermentation and is the main component in vinegar.  However it is NOT vinegar, which is made by a further fermentation process.  Acetic acid is naturally occurring in body fluids and plant extracts and plays a role in body metabolism.  Although an E number (E260) it is not artificial and has no known contraindications to human health.  It’s present in lots of commercial products, including some bread, as it inhibits mould growth and has antibacterial properties.  Unless someone with much more knowledge than me can tell me I shouldn’t be eating it, it’s on my ‘allowed’ list occasionally and in small quantities.

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Tags: low histamine diet, low histamine foods

150 thoughts on “Low Histamine Diet

  1. Victoria

    Hi there, I’ve been deal with masto issues for a year now. I seem to go through waves of various symptoms and triggers. I am just starting on a low histamine diet but I have a question. If the low histamine diet is helpful, why am I reading that “if you tolerate it then continue eating it.” I tolerate many things that are on the high histamine list and react to some deemed low histamine. This message is confusing to me and I want to ensure if I am doing the diet, I am doing it the best way (as far as we know:) could you offer some guidance? Thanks so much

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    1. bertieandme Post author

      Hi Victoria

      Sorry to hear you’re dealing with mast cell issues. I can’t really offer advice, my blog just chronicles my own journey and I’m no kind of expert or anything.

      I try to follow a low histamine diet period, though obviously there isn’t concensus on exactly which foods are low histamine/DAO reducers/histamine liberators.

      I do eat some foods which are considered higher histamine or a histamine liberator and have outlined why I do this in this blog post: https://mastcellblog.wordpress.com/2013/11/06/whattoeat/

      I wouldn’t personally advise people with mast cell problems to eat anything just so long as they don’t react. Unless you have a true allergy, which isn’t the case in mast cell diseases, histamine is a build-up so if you keep eating high histamine foods eventually your bucket will overflow and you’ll have a reaction. I could eat a whole block of cheddar cheese today and have no reaction whatsoever, however the slice I then eat tomorrow could be the piece that tips my histamine bucket into overload. I personally don’t react to any food immediately, and only get bad symptoms if I’ve eaten many high histamine foods. Which is why I stick to low histamine foods always.

      I’m not sure where you’ve read the advice “if you tolerate it continue eating it”? Maybe they’re referring to low histamine foods, which people can still react to? Just because something is low in histamine doesn’t mean you personally will react OK to it. Mast cell diseases are very personal, and one person’s safe food might be someone else’s unsafe, eg. buckwheat is considered low histamine but I react badly to it, same with apples.

      Not sure I’ve been much help there!
      Jak

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      1. Joe

        If one’s system is presently overloaded just about anything eaten will cause discomfort and symptoms. The bucket analogy is a good one, remembering also that triggers continue to produce histamine even after the offending foods are removed. These periods therefore are not the time to attempt to determine what is and isn’t causing symptoms. I stopped eating mushrooms recently, as they are on some high histamine lists, and it has made a significant difference. In my case it takes weeks for the symptoms to clear out after an episode, generally at least two months, during which time I usually must medicate.

        If anyone is interested I can list those foods and other things I must avoid.

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        1. Robin

          Hi, Joe! When you say “symptoms”, which do you experience? Your assertion that it takes 2 months to clear your system after a bad response makes sense to me. Does this mean you are able to go medication free during your good periods? May I ask which disorder you have? I have TMEP. So far, it only involves my skin so my symptoms are the spots and itching. Are you able to drink coffee? This is one of those items I’ve found to be on some elimination lists, but not others.

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  2. Joe

    Robin,
    My diagnosis was simply IBS. There is obviously an underlying cause and therefore more to it but I never pursued it. I was prescribed acid blockers, went through them all, but decided after many years to get off them completely, which was not easy. I was also prescribed generic Ativan which worked great but comes with a cost.

    Symptoms: Flushing of the entire body, difficulty breathing deeply, stuffed head, bowel changes, indigestion, body itch, heartburn, gas and bloating, swelling of the feet and hands, hives, increased pulse, swelling in the back of the throat. The most difficult of these was the shortness of breath, some of which was a side effect of the acid blockers. I recognized all these symptoms in my late father, which helped me get a handle on the problem. I’d be a mess without the internet and his memory.

    It’s interesting you ask about coffee. Coffee is enemy number one! I can drink a cup of coffee everyday for the next two weeks and feel fine every day. Or I can drink a cup of coffee a couple times a week for a few months and I’ll feel fine. But then it will hit and take me months or up to a year to right myself, a bit of knowledge my father did not have as IBS or HI was not on anyone’s radar at the time. And he never suspected that coffee and all those healthy foods from his garden were causing his problems. I’ve relearned this lesson twice over the past eight years, that coffee is enemy number one, and after having consumed it daily for 35 years.

    If I’m Spartan about what I eat I only ever need activated charcoal to suppress symptoms, and then get myself completely back on the wagon with my eating. I was able to wean myself off acid blockers over a period of several months after experiencing acid rebound when I attempted it too quickly, and have been two years without these meds. I was on prescription strength of about 200 mg of ranitidine a day, for example.

    So yes, I would venture it is possible to live without the meds if you can identify what’s activating the mast cells, and if one possesses the self control. I no longer eat anything with tomato or nightshade save potatoes, and can’t consume anything from the onion family. Just doesn’t work. And there are many, many more, and much more to the story. But the sacrifice is worth it to avoid the results.

    That was longer than I thought it would be.

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    1. Robin

      Not too lengthy for me as I’m in the first stage of learning any number of things about CM (TMEP) and other disorders/diseases. Thank you so much for the quick response.

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    2. Shawna Wolfe

      Hi Joe,
      I have been fighting the same symptoms that you have described for 18 years. I have seen countless doctors, surgeons, and allergy specialists and no one ever mentioned this. I found out about histamine intolerance a few days ago and have been researching it ever since. I am %100 sure this is what is wrong with me and I feel hope for the first time. The problem is that I have found so many differing opinions on what you can eat. I was wondering if you could provide me with the list of food you eat. I just need to start somewhere and I should be on the strictest diet possible because of how long I have been suffering and my symptoms have gotten more severe over the last couple of years.

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      1. Joe

        Hello Shawna,

        Foods that I DO NOT consume:
        All coffees, Tea, Soft drinks.
        Caffeine.
        Red wine, beer. White wine and white rum are usually okay but never a lot.
        Dairy – though I will do a tiny bit occasionally, like a bit of feta cheese on a veggie pizza.
        Tomato, Pepper, Eggplant, and any food from the nightshade family save potato.
        Garlic, onion, chives, etc, – any food from this family.
        Peanuts. Tree nuts I tolerate well, especially cashews, but never a lot of nuts at one time.
        Spicy foods.
        Pepper
        Spices generally like ginger, cinnamon, etc., though a touch is okay occasionally.
        Ham and cold cuts and prepared meats like for sandwiches.
        Radishes and turnips and anything from this family
        Kale, Collards, Spinach, Chard, Beet greens and beet root. Romaine and leaf lettuce are fine.
        Cauliflower, Broccoli, Brussels sprouts
        Lemon, grapefruit. An occasional orange is okay. Never any citrus rind.
        Anything with added pectin because most pectin comes from lemon and grapefruit. (This one took a long time to figure out.)
        anything with carrageenan, annatto
        HFCS
        Salty foods like chips
        Sunflower seeds and oil. Pumpkin seeds are okay – maybe it’s the high magnesium that helps.
        Processed foods. I’ve learned to make my foods at home and read labels when I buy foods ready made. Even a trip to subway or a sandwich shop is bad because there are so many additional ingredients and colors that my system will no longer tolerate.
        Fermented foods like kraut and foods containing vinegar.
        cucumber
        Any and all artificial sweeteners and artificial anything.

        A typical day for me involves juicing a couple stalks of celery, a couple carrots, a red apple, half a head of romaine lettuce or a big handful of green lettuce and an apple sized piece of butternut squash. I’ll have one fried egg on a piece of 100% whole wheat bread, some steel cut oatmeal, a chicken thigh or half breast – microwaved. Throw in some nuts, usually walnuts, and some roasted pumpkin seeds or cashews. That’s a day.

        I will eat boxed cereal – Joe’s O’s or Barbara’s Original Morning Oat Crunch. Those are the only two. I just eat it dry like finger food.

        Rice is good, as is whole wheat pasta, green beans, sweet potato. I use brown rice.

        Lately I’ve tried to cut back on the amount of fiber I’m eating without sacrificing the nutrition, which is why I juice. It seems my system tolerates this better. Maybe it gives it a break. And I only cook with extra virgin olive oil.

        I don’t eat red meat anymore.

        Hope that helps and wasn’t too long. There’s more I could say, like how I reacted badly to Echinacea/goldenseal tea the only time I ever tried it, but that’s enough for now.

        Joe

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  3. KIM

    I’m hoping one of you can direct me to information about diagnosis of MCAS. I have had an uncontrollable all over body itch for over a year. I’m not typically one to complain and its seems like “itch” can’t be that serious but this has really been debilitating. I have had many tests done by several different doctors, and have been given various “medications” but none seem to work. I am fairly healthy otherwise (through this I have had scans of every part of my body and a boatload of labs). Are there any specific tests that I should request to either identify or rule out MCAS?
    This article is very interesting to me. Although I have had extensive allergy testing done and am not allergic to anything, I recently started to look at what I eat to see if there are any triggers I can identify. I came to the conclusion that anytime I eat a significant amount of chocolate I have an uncontrollable flare. Yesterday, I had pizza and an ice cream in a chocolate covered waffle cone and am absolutely miserable and itching uncontrollably today. Interesting that both of these items are on the possible trigger list. Needless to say, I will not be having chocolate or tomatoes of any kind and I am going to continue with my diet review. I am hoping that I am actually on to something as I am becoming quite desperate.
    This leads me to the question originally posed…..how is MCAS diagnosed? Are there any medical professionals that deal with it?

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    1. bertieandme Post author

      Hi Kim

      It depends on where you live, with the USA having better testing methods than the UK (which is where I live and this is my blog).

      There are a handful of Doctors who deal with Mast Cell Activation Disorder but they are few and far between. In the UK there’s basicaly only one or two – I was diagnosed by Dr Seneviratne in London. I don’t know the current best doctors to see in the States, but if you head to the Inspire rare diseases forum you can ask on there: http://www.inspire.com/groups/rare-disease-and-genetic-conditions – it’s an excellent forum for discussing mast cell issues.

      The first thing is usually to have some skin prick allergy testing done, to see if you have any true allergies. If these are negative you can then have your tryptase levels measured. If this comes back high it indicates Mastocytosis, if it comes back normal it may indicate MCAD.

      If the Doctor thinks MCAD may be a possibility he will want to test for urine Methylhistamine, urine PD2, urine Leukotriene, Chromoglanin A and Heparin. You may also want to be tested for the gut enzyme DAO, which would indicated Histamine intolerance rather than MCAD.

      Saying all that, diagnosing MCAD is notoriously difficult and I’m not sure a Doctor would consider MCAD or Mastocytosis purely on the basis of itchy skin, as both diseases usually have a much broader range of symptoms.

      Hope that points you in the right direction,
      Jak x

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  4. Sherri

    All of this information is very interesting yet somewhat confusing for me. I have had mild symptoms of HI for several years, but like everyone else suffered through it all without knowing what was happening until my recent self-diagnosis. Doctors told me is was possibly IBS, autoimmune thyroiditis, idiopathic (which means they have no idea), stress, etc. My symptoms are certainly not as debilitating as some of those I’ve read about (mostly intermittent hives and occasional mild GI distress) which completely went away for a couple of months when I started a grain-free diet. Now, the hives have returned almost daily though not quite as many and not really as “itchy” as they used to be. What I don’t understand is how you can know what the triggers are if it takes weeks for the “histamine bucket to overflow” and then even more weeks for the reactions to go away. It seems impossible to identify specific triggers with that kind of time frame, so how do you do it? I’m thinking maybe coffee alone doesn’t trigger my symptoms since I drink it every day but maybe a combination of having coffee and another trigger food in the same day is doing it? I would rather itch than stop drinking coffee anyway, so I guess my next step is a detailed food journal. I guess I’m an enigma because my IBS-like symptoms were 10 times worse during the period of time when I had an ovarian cyst and have been mostly under control since surgical removal of the ovary 7 years ago! I think that’s related to the histamine-estrogen relationship that my body is apparently very sensitive to.. Anyway, thanks for the information and support, everyone. It’s good to not feel so isolated for being different than everyone else.

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    1. Robin

      You sound like me, Sherri – confused and frustrated. I don’t get it! Some people go on and on about in detail about their triggers. I’m not buying it. I’m only 3 weeks into an elimination diet for my mastocytosis and I feel lost. I decided I’d try the antihistamines on an “as needed” basis but found. A couple of good days, then itch. What’s causing it? Today, while researching triggers, I happened upon “antibiotic” on a list. I’ve been on an antibiotic for the past week. Could that be the reason for things turning the wrong direction? Hoping so. Back to the drawing board, though. I’ll keep stumbling along and praying I get a fix on it in the near future.

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      1. bertieandme Post author

        Hi Robin

        I totally understand your frustration and really feel for you. However, you’ve only been on the diet for 3 weeks so try not to be so hard on yourself. You’ve been having symptoms for years and you’re not going to turn the situation around in a couple of weeks. It took 4 months for me to see *any* reduction in my symptoms following a low histamine diet, but then I’d been ill for 40 odd years!

        Don’t get all wound up reading every single thing you find on the internet – you’ll drive yourself insane. My advice would be to decide on a low histamine diet and stick to it for 6 months. If at the end of that you’ve seen no improvement *then* you can look at changing the diet.

        And remember, there’s no cure for Mastocytosis :-( If there were a cure none of us with mast cell diseases would be sick. I still get regular hives, itchy skin, insomnia, gut problems, hair loss etc. etc. I just don’t have anaphylaxis any more thank heaven.

        Jak x

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        1. Robin

          Thank you, Jak! I appreciate your thoughts, and I agree wholeheartedly. And I really appreciate the fact you talk of 1 step forward, 2 steps back, and I do try to take the online info with a grain of salt. The specific food triggers makes no sense to me if we’e going with the cup analogy. Good Lord, surely after weeks/months of being on a low histamine diet, you’d think the cup would get pretty low such that a mistake (hidden ingredients, say in a restaurant, in extremely low quantities ) would not cause the reactions. I asked my doctor yesterday and she simply suggested there would be times where I won’t know what’s causing the itch.

          I am trying (at least during elimination process) to take as few antihistamines as possible. Remind me again, are you on a regimen of antihistamines for the hives & itch or do you take on an “as needed” basis now?

          Also, you use the term anaphylactic “reactions”, what did you experience – start to finish? Regular use of EpiPen? Duration, roughly, of each episode. I picked up my EpiPens yesterday; praying I never have to make use of them.

          By your standards, have you seen a reduction in the hives/itch? Less frequent bouts of it?

          You’re so kind to let us all learn here through your experiences and that of others. BTW – I agree with you in that anybody who believes they have histamine intolerance should see a doctor; find out what they’re really dealing with rather than guessing. While I’m not thrilled with my mastocytosis diagnosis, at least I now know what’s going on.

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          1. bertieandme Post author

            Hi again Robin

            I have no experience of reactions to specific foods – I’m definitely in the bucket category when it comes to food and histamine release. As you rightly say, if you keep your histamine bucket low you can sneak in the odd high histamine food without tipping your bucket over. At least that’s been my experience. However, I do know people with mast cell disease who react very badly to specific foods, yet don’t test positive for allergies to those foods. We’re all different.

            My worst reactions are to drugs, despite not being allergic to any of the ingredients. We have no idea why I react the way I do to drugs, but I know it’s not uncommon. More about this on my drug blog post https://mastcellblog.wordpress.com/2013/06/25/drugreactions/

            I take both h1 and h2 antihistamines. Couldn’t do without my H2 drugs, as they treat my severe reflux and nausea. The h1 antihistamine does nothing for my sneezing, itching or hives. However, none of these symptoms are life threatening and are just annoying rather than anything else so I don’t worry about them. However I keep taking the H1 drug because I’ve found I get fewer migraines, much less stomach ache and my period pain is less when on them. I take both drugs every day.

            You have to remember that all sorts of things in the environment affect our mast cell reactions. Weather, stress, moulds, chemicals, heat, cold, fumes, menstrual cycle/hormones, emotions……the list is endless. I’d go nuts trying to work out what causes my hives or my skin to itch so I don’t bother.

            I’ve covered my anaphylactic reactions in this blog post https://mastcellblog.wordpress.com/2013/10/14/anaphylaxis/

            Jak x

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    2. bertieandme Post author

      Hi Sherri

      Sorry to hear you’re struggling and I admit it’s all very confusing – I know I felt like I was banging my head against a brick wall initially.

      Firstly you can’t “self diagnose” – you need some proper testing done to find out what’s really going on. You should have some allergy testing done to see if you have any true allergies if this hasn’t been done already. If you have no allergies you can have DAO levels tested, which will indicate whether or not you have HIT. You can also have various mast cell mediators tested which will indiciate whether or not you have MCAD. Not every case of hives will be due to HIT or MCAD so it’s pointless trying to treat for these diseases if you dont have them in the first place.

      I get a bit cheesed off with the information online about these diseases, with people following all sorts of weird diets etc. For me, I started on my low histamine diet and within 4 months my reactions *after food* stopped completely – I was having anaphyactic reactions within 20 minutes of eating, so the correlation to food was obvious. During the first 4 months I felt I took 2 steps forward and 1 back, and at times thought it wasn’t helping, but I had no choice other than to stick with it as I knew food was my main culprit.

      I don’t have “trigger” foods and don’t really understand the concept. As you say, histamine build up in HIT is like a bucket so if you eat low histamine foods your bucket won’t overflow and your symptoms will be mild (they probably won’t go away entirely because all food contains histamine and we produce histamine during the digestive process every time we eat *anything*!).

      Having got the anaphyalctic reactions under control which were down to my Histamine Intolerance (due to low DAO in my gut), it’s made very little difference to my other symptoms. I still get hives, I get have insomnia, I still have various gut problems. A low histamine diet isn’t a cure if you have mast cell disease (and I’m unlucky enough to have both HIT and MCAD) – there is no cure for mast cell disease. Other things than food affect histamine production in MCAD, eg. menstruation, stress, allergies, for me personally heat and cold etc. However, if I weren’t following the diet and taking antihistamines my symtpoms would be much worse.

      Jak x

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  5. Robin

    I”m tired so that didn’t turn out well. I trust you’ll read between the additional words and figure it out. Time for bed.

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  6. Joe

    That’s correct. It isn’t just the food. It’s anything you are exposed to. I had to change my daily vitamin because of the belching and indigestion. The one I use now leaves me symptom free. I have been figuring this condition out for nearly a decade, and learn new things daily. I never want to return to those old days, or be as miserable as my father was for so long.

    I have given up a lot of foods, and had to adjust to not using stimulants like coffee and tea. But if anyone had been through what I went through they would consider it a small price to pay to be symptom free.

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    1. Robin

      I understand that, Joe. Glad you were able to find a routine that works well. That’s the trick, I guess, trying to determine what will work best for us. I’m taking the baby steps, but I can see the difference in terms of itching already (roughly 3+ weeks). I’m going to stick with it! I have a trusty crock pot in place now so I can cook basic chicken dishes and freeze immediately. Once cooked, dinner’s a snap, but I’m still struggling with what to have for lunch. That’ll be my next to-do from list. Clearly, it’s a very slow process.

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      1. Joe

        It is a slow process, Robin. Laundry detergents, dish soaps, food additives, all these things are part of the new landscape that we were never exposed to before. Even different foods that were not part of our ancestry. It’s all changed. And it takes months for our systems to get back to normal when the exposure ends. Look at how long something as simple as a broken bone takes to heal, and then the additional time for muscles and tissue to recover their strength and function. Just because the injury is internal and not so obvious doesn’t mean it isn’t there or is as acute.

        I took three trips to the ER in 24 hours on one occasion, in hindsight all because of the foods I was eating, wholesome foods that were simply not wholesome for me. It’s a trial for sure. My wife made lasagna yesterday. The day before my son made a great dish with peppers and onion. Had to walk away from both. Just not going there again! Can’t even eat jams and jellies because they’re typically loaded with pectin and lemon. The things you learn.

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        1. Robin

          You’re a smart man, Joe; points well made about what we can’t see and how “the times they are a changin’!” ~Bob Dylan Fortunately, for me, we no longer have children at home so it’s just my husband and me maneuvering through this. He appreciates what I’m up against so he eats what I fix, that which will, hopefully, work for improved health. I do have some of his favorites in the fridge (salsa, cheese, condiments) which he can use to spruce up anything he deems too bland but so far, so good.

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  7. Kim

    I am trying to figure out if my 20 yr old daughter is having these issues. We started the GAPS diet back in September. She is very sensitive in general (and she has lyme disease, which flared when we got toxic mold), so she is avoiding oxalates and nightshades, just to be on the safe side, but some of the high histamine foods do seem to causes a reaction in her (green tea, strawberries, sunflower seeds, cocoa, beef…)–but not itching. She has had IBS type symptoms her whole life. Her behavior got a lot better when we switched to gluten/dairy/artificial anything/nut/strawberry/seed/yeast/cocoa/soy/barley/rye/corn/red meat free. She was 7 when we changed her diet. Her IBS stuff never really improved (she had a lot of constipation and spent a lot of time in the bathroom–like hours multiple times a day) until recently when we started the GAPS diet, but she does still get bloated sometimes. She is sick at the moment and not really eating much. She had some tea today, some bone broth, and some coconut milk. Somehow she ended up bloated from that and we don’t know why. She is not itchy, but she does have perpetual “goosebumps” on her neck and maybe a little on her chest. I don’t want to eliminate too many foods if that is not needed. Her issues are mostly cognitive–brain fog, concentration, memory, organization, etc. and the bloating. Anyway…if people usually have itching with histamine issues, then maybe I can rule it out at least. Thanks for your thoughts!
    Kim

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    1. bertieandme Post author

      Hi Kim

      Really sorry to hear of your daughter’s issues, especially from such a young age. I have no medical or nutritional qualifications, so can’t comment on what the cause might be. I know how frustrated you must be, but I’d be very wary of anyone diagnosing your daugher online, who’s never met her, tested her, has no access to her medical notes or has any qualifications in this field.

      That being said, my advice would be: if you suspect Histamine Intolerance, you could have a DAO test done as low DAO in the stomach is the cause of HIT. If this is normal you can at least rule HIT out.

      This blog deals mainly with Mast Cell Activation Syndrome, and it doesn’t sound from your brief description like your daughter fits this diagnosis. Not everyone with MCAD itches, but most have more than just gastro-intestinal symptoms and most people have predominantly diahorrea not constipation – there is a suggestive list of symptoms here http://oreds.org/uploads/3/1/5/0/3150381/mcadsymptomslist.pdf though obviously not every patient will have every symptom. Saying all that, I never get diahorrea, but that’s because my Ehlers-Danlos is slowing my bowel down.

      If you do decide to restrict high histamine foods from your daughter’s diet I’d advise you get the help of a nutritionist, as this diet is very restrictive if you are also gluten free, dairy free, nightshade free and oxalate free. I’d be as worried your daughter wasn’t getting enough nutrients as I would be about her bloating.

      Wishing you lots of luck in finding the cause of your daughter’s symptoms.
      Jak x

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      1. Joe

        Kim,

        One last thing. Activated charcoal capsules always relieved the bloating for me. They’re inexpensive if you don’t buy the homeopathic stuff like you find at a pharmacy.

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    2. Joe

      Kim,

      FWIW I had IBS symptoms long before I had serious itching. Dietary changes eliminated both. Tea is permanently out BTW for me, same with coffee – and no stimulants like caffeine. I’m no doc but suffered serious bloating and shortness of breath until I was able to figure what foods were the culprits, and eliminate them. When my symptoms were at their worst I survived on oatmeal granola. Maybe it’s oat’s soluble fiber that helped. Can’t really say.

      The onion family is out for me. No garlic, chives, etc., so I have to watch those broths and gravies.

      I also had stuffiness, like I had a cold when I didn’t.

      My amateur opinion is that there are foods and food groups causing the problem.

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  8. Anonymous

    I enjoyed your post. Making the switch to this diet instead of running around trying to work with all the supposed natural anti-histamine foods that only work for so long and then inflammation sets in the next time that you eat them.

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  9. Glo

    This has been a help as I am just beginning to wade thru all the diet info for mast cell activation syndrome. I see you have some foods that are restricted on my list. I will try these and see how I feel. It opens up a lot more in the fruit category. What exactly do you use for salad dressing? Salt and pepper and even plain salad can be good but sometimes I would love dressing. I have had a big improvement since I started watching my diet and I really notice when I slip. I know everyone has certain things that work for them that are on the restricted list for others. For instance I find a dry ginger ale soothes my stomach after I’ve eaten the wrong thing. Restaurant dining is ridiculous. Almost impossible to eat out without problems. I eat small amounts of anything that is on the restricted list to see if I can manage it or not. Definitely no tomatoes or hummus. Also since I’ve started this I no longer have panic attacks unless I’ve really gone overboard. Too much sugar is another trigger. For ten years I thought I was just crazy until I finally found an allergist who believed there was a problem. The relief in knowing I wasn’t just crazy is amazing. Also no more depression. Let me know about salad dressing!

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    1. bertieandme Post author

      Hi Glo

      Sorry to hear you’re also on the mast cell journey – it’s so difficult and, as you say, what works for one person doesn’t work for another.

      I wish I could help with the salad dressing issue but as yet I haven’t found a low histamine dressing recipe. All salad dressings use either lemon juice or vinegar as main ingredients. There is a mayo recipe on this page – it’s the best I can do. Or maybe you could adapt the chinese honey sauce recipe to be milder – it’s quite runny so would do as a dressing, though obv honey contains natural sugars which you may be avoiding. Sorry I couldn’t be of more help!

      Jak x

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  10. glo

    I did look at the recipes for sauces after leaving my first comment and thought I could probably adapt some of those for salad dressing. Natural sugars don’t bother me. The prepared junk food sweets are my weakness and really cause problems when I slip up with those. They’re bad even without MCAS. In the states it can be a challenge to find healthy foods it seems. Grocery shopping can take quite a while when reading labels. I was a label reader anyway but now I’m fanatical. Trying to stick with fresh when I can but it is hard when working full time and then trying to figure out what to make for dinner that doesn’t take a long time. I appreciate your recipes and will be searching out more. Easiest lunch I have found is a peanut butter and honey sandwich on gluten free bread. Apple sauce and graham crackers for a snack. It also seems to me that foods that are good for you are more expensive. Processed goo is cheaper to make ? Seems odd. Will now arm myself with a shopping list compiled from your recipes and see how it works for me.
    I really don’t feel bad at having been diagnosed with this. After 10 years I’m just relieved to know this is an actual problem and that I can do something to help myself. I look at it as an opportunity to eat better and regain my energy and mental health. I have always tried to eat well and exercise but have been so fatigued and depressed that the exercise especially fell to the side. Funny how all the time I thought I was eating well I probably was but just the wrong things for me. It was frustrating to eat well and still feel awful. Nausea almost every morning for 10 years and doctors telling me all I needed was exercise and I’d not be depressed etc. I’m a veterinary nurse and on my feet for almost 9 hours straight most days. Plus I’m 59. Coming home and working out or going out before work for a brisk walk are things I would love to do again and hope after I get the diet resolved I can. Energy level has increased and I’m sleeping well but have only been doing this for a month. Expect things will get better all the time.
    Thank you for starting this blog for all of us out there who have dealt with the frustration of this problem. Hope your health problems also improve over time.
    One more note, I also have pernicious anemia, I don’t absorb B12 so monthly shots. My doctor suggested I try a sub lingual which worked for about a week of dosing and then one morning I broke out in bad hives. Back to the monthly shots.
    Thank you for listening.

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    1. Joe

      glo,

      Boy can I see my journey in you. My doc is still clueless but that’s okay because I figured it out on my own.

      When I occasionally eat a salad I just use some olive oil and a touch of salt. Mostly it’s just some carrots, celery, lettuce eaten raw, just to get the good veggies. Those three I can handle. Am trying some Pines Wheat grass powder presently. A $34.00 bottle lasts 6 months supposedly at a couple teaspoons a day mixed in water. Helps make up for the collards and kale and spinach I can’t handle. Never thought I’d be eating wheatgrass powder but it’s not so bad. And there’s no gluten in wheatgrass powder btw, odd as that sounds.

      Once your body heals and you figure out the diet you’ll be good. And ditto on that eating out.

      Joe

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      1. glo

        Thanks for the advice. I do have a hard time with salads. Just don’t digest well but sometimes I really crave one. Will try just a dab of olive oil and salt and pepper. It’s so time consuming reading all the labels on things. I read about some things other people can eat that were on my restricted list. Rather than try one thing at a time I tried everything and well that was dumb! Now have to narrow this to trying one new thing at a time. I’ll get this. More self control.

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        1. Joe

          No pepper – or peppers – here. Learned that over time.

          And that’s the thing with salads for me. It isn’t the green or red or romaine or head lettuce. It’s the tomato, peppers, cabbage, broccoli, cauliflower, pepper, seasonings and dressing, which contains lemon, pectin from lemon, pepper, vinegar, carrageenan, annatto, spices, etc.

          Figuring out one’s diet and staying with it 99% can be an almighty trial. But it’s worth it.

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  11. Diane

    I find that if I eat food that is not good for me – as having chinese food at a restaurant – I sip Baby Benadryl and maybe take an Imodium tablet before or just after I eat. I have a condition called Mastocytosis and have a lot of histamines in by body. I’m not allergic to any foods. I’m still finding my way with different foods but do not have any reactions if I take afore mentioned over the counter drugs. I lost 30 pounds & was bed ridden for awhile trying to get my gastro intestinal insides to calm down and accept even the basic foods that I found I could eat. Taking these over the counter drugs has saved my life.

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  12. Glo

    I need to be very careful of what I eat and am also still learning what I can tolerate. I take a Claritin every morning but can not tolerate Benadryl. It makes me jittery and makes my heart race. I try not to eat out as that is generally what disagrees with me the most. However I have a mom who is 95 and an older sister who don’t get what I’m going through. So I try to limit eating out with them to about once a month and eat very tiny meals. This diet thing is hard to do. Had someone say why don’t you keep a food diary? Because things can change from day to day, that’s why. People still tend to think I’m just being ridiculous but I don’t care. After 10 years of nausea, depression, anxiety attacks and being bloaty I’m finally feeling good. Oh and the fatigue that no one gets. I’m able to do things again and I mean just basic things like cooking for my self after work and house work and now gardening. I had so much guilt because I couldn’t do these things and people thought I was just a lazy whiner. It’s so nice to have found people who get it.

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  13. Robin

    I’ve read a bit of apple cider vinegar is not too bad, the lowest histamine count of of all vinegar. Since I did the elimination diet for almost 8 weeks (strict), I’m finding I can have a few splurge items here and there. But I have to be very careful not to make it a habit, or things start going south very quickly. I’ve talked to a nurse who also has a mast cell disorder that we all have to be very careful about limiting our foods to the extreme. Too much of the same foods on a daily basis can turn on us. I hope to not be that person. For this reason, I eat mostly the low histamine foods, but allow a bit of the other things just enough such that my symptoms (I have TMEP) are barely noticeable. I actually find physical agents to be harder to figure out and manage, but I’m determined to get there. Time and patience are key to the process.

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  14. Terah

    Can I please give everyone some hope…. These “diseases” are curable and are NOT life long sentences. I’ve been suffering now for 4 months. I’ve seen 6 different doctors, over 10 visits, a full lab done (which all came back fine) and no answers, except every doctor still trying to shove cream down my throat for my entire body that’s covered in painful skin rashes! Iv’e lost my job over this. I’ve spent the last 4 months researching and I’ve come up with my own way to heal myself and it’s working!!! In the two weeks that I’ve changed a few things, my rashes have started to clear up! Our bodies know what to do to heal we just need to help it along. Our bodies are well made machines. Elimination diets are only part of the first fix. Our bodies naturally produce histamine and once the GUT IS HEALED you can go back to eating a well balanced diet. THE ISSUE STEMS FROM INSIDE THE GUT. I was always able to eat all foods. Had a sensitive stomach to some things but it wasn’t until I took a course of ANTIBIOTICS (that I now know I never needed in the first place) that made me allergic to a lot of foods. I ate a pickle and almost went into anaphylactic shock! How ridiculous! Here’s my plan to self heal my GUT and small intestines so I can EAT again! LIke I said, our bodies are designed and NEEDS to eat all kinds of fresh foods all colours of the rainbow, histamine producing or not. Forget all the killer foods (processed). YOu don’t need those anymore! Start your low histamine diet, suited for you. (another thing i’d like to mention is candida overgrowth!) Next, add in vitamins; vitamin C, D, B and evening primrose oil. Omega 3’s, Digestive enzymes, and please start adding new PROBOTICS back into your system! BUILD your immunity back to get your health back, and you will!!! Get off those med’s! They kill! and please for gods sake don’t take antibiotics! Worst thing I ever did. Lemon in your water turns alkaline in the body so drink lots! Another simple test I did was bought some PH strips and found out my body was way to acidic! If you have too many histamines, I’ll guarantee your PH is too acidic. Guess what happens when our bodies are too acidic? DISEASE. It’s really that simple. Heck, follow an alkaline diet too! Just know that by taking out foods that cause too much histamine you’re also shorting your body of nutrients that it might need to heal-which is why it’s imperative you supplement with those nutrients until you can HEAL YOUR GUT. I’m really sad that doctors only treat symptoms with meds. That will not heal your microflora! If you do any research, research how to heal your gut flora. Take the time you need to heal. YOu didn’t get here over night. The probotics ARE IMPORTANT (find some that don’t release more histamine-a good brand, which I’m currently taking is ALIGN). When your gut is over run with bad bacteria, its actually the bad bacteria that can also release the histamines. If your gut is full of holes (so to say) those get released right into the blood stream. IT’s all related. You have to start killing off the bad bacteria. While you’re at it I suggest looking into herbal remedies. They grow for us out of the ground for free (yes, I’m talking about weeds) to HEAL our bodies, but you can also buy it in a store if you like. Dandylion root, marshmallow root, slippery elm, plantain. Last but not least-I’m a coffee lover but I’d rather not die so until I can add it back into my life I found a great alternative. It tastes just like coffee but it will heal my gut at the same time!!! Roasted dandelion root and roasted chicory root! The power is within yourself to heal yourself. What are you waiting for?

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    1. Jak Post author

      While I appreciate you taking the time to comment so extensively, your advice is naive and insensitive. You’ve only been sick 4 months and are ‘cured’ – maybe you don’t have the diseases that many of us do. If these diseases were curable through diet or probiotics we’d all be well. I’ve been ill for 21 years – don’t you think I’ve tried everything you’ve suggested and a whole lot more – see this post https://mastcellblog.wordpress.com/2014/12/16/try/ for details.

      I don’t take antibiotics – I’m allergic. And my mast cell disease went berserk before I ever started antihistamines (to which I’m now also allergic so don’t take). Mast cell disease is potentially fatal, and a bit different to having ‘leaky gut’ or an imbalance of gut flora.

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    2. glo steiger

      First let me say I’m glad this seems to be working for you secondly let me ask if you have been diagnosed with anything? Believe me 4 months is not a lot of time with mcas. I have been through all the herbal stuff etc. my diet change has worked a lot but things can change so that what works one day may not be working in a couple of weeks. Every bodies systems are different wether using herbal eastern or western meds. We will all react differently. I’ve had mcas 10 years and have finally been diagnosed. This is a life long thing. I really hope this is not what you have. Antibiotics may be something that do cause problems for some people but please also realize they can save lives. I hope you stay healthy and hope all those things continue to work for you. I’ve done it and it didn’t help. Thank you for the thoughts thoughSent from Yahoo Ma

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      1. Robin

        I was going to weigh in on this person’s comment about “curable” but thought I’d wait. Had he/she read through the blog, it would be clear that most of us have been to doctors, have a diagnosis and that mast cell disorders are incurable. I do hate it when people don’t know enough about the facts, have no medical background and either self-diagnose or try to offer advice to those of us who have gone through the proper channels. Frustrating! But we know what we know. And that’s why we gather here, or on other social media sites like it.

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  15. glo

    This is the same type we get in the veterinary clinic. Pets in terrible shape and they have been healing it with herbs etc. I’m not against herbal remedies but its a good way to kill your pet as they can be poisoned by some of these things. Secondly if this worked so well why are you now here with your very sick pet? I could rant on this all day.

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