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Ketogenic diet-MCAS person who may be salicylate intolerant.

Discussion in 'General Treatment' started by Misfit Toy, Jul 9, 2017.

  1. Misfit Toy

    Misfit Toy Senior Member

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    Hi everyone.

    Some know or have followed what is going on with me. I have developed severe MCAS. It has gotten so out of control that I am resorting to a strict diet of elimination.

    On all of the MCAS sites, people recommend ketogenic. Something is keeping me up at night. I have horrible itching. It's honestly worse than anything I have ever dealt with as it's constant, I can't sleep and it's unrelenting. People are suggesting that I may have a salicylate allergy as I have rid myself of all histamine foods and feel no better. I am not doing well low histamine, so it's possible that it's veggies.

    On a recent spectra cell test that I had done, it came back saying that I do not do well with fructose. IT showed up that I am intolerant to fructose. Fructose is also in veggies.

    A week and a half ago, I made carrots and broccoli with dill...all fresh and organic and had profuse diarrhea.

    Has anyone else done a diet like this? I am scared TO DEATH to do it for fear I will not be able to add foods back in, but I am desperate. Like more desperate than I have ever been as I'm barely getting out, or leaving apartment.



    I have migraines after certain foods and itching. I had Earth Balance spread last night with no soy and I had an immediate reaction. Earth Balance is made up for vegetable oil and palm oil. I can't help but think...salicylates.

    It just seems so wrong to me to avoid veggies. I was not trained to do so and it's undoing years of programming to juice, eat salads, etc.

    I can't have any butter, milk, or cheese of any kind. NONE. Highly allergic.

    I am being told to just eat chicken and white rice right now. Why not beef? UGH.

    I would like to also say that even though one can go to a specialist in MCAS...after much research, the things they recommend are basically things that everyone recommends. The same meds, etc. It's not like they have a magic wand or a rabbit they can pull out of a hat. Xolair, Ketotifen, Zantac, Pepcid, Zyrtec, etc...are the standard meds. Oh, and Cromolyn/Gastrochrom. If you can't even handle them, or they are not doing the job, that's a problem.

    I can handle Zyrtec and Zantac or Pepcid but they are not touching my profuse itching and hydroxyzine makes me feel spaced and depressed. Something is triggering me and I need to find what it is.
     
    Last edited: Jul 9, 2017
    gabriella17 likes this.
  2. Crux

    Crux Senior Member

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    Hi,

    I see many folks here who have some type of histamine intolerance. I've had bouts of it too.

    Copper is necessary for histamine metabolism along with B6 and vitamin c.

    There are low carb foods with it, but I'm not sure they are tolerable for you. Nuts, seeds, chocolate... How about lobster and crab ? Mushrooms ? Oysters?

    One thing though, anything that raises nitric oxide can cause migraines. Copper can do this if zinc is low.

    http://glutenfreeworks.com/blog/2010/07/28/understanding-copper-deficiency-in-celiac-disease/

    Ugh, bad news about your suffering ...
     
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  3. Misfit Toy

    Misfit Toy Senior Member

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    This all high histamine. All of it. I am trying to eliminate histamine and salicylates. Chocolate is the highest liberator there is for histamine. All shellfish and nuts, seeds, etc. Sadly...

    I have high copper, low zinc.
     
  4. Crux

    Crux Senior Member

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    Sometimes copper seems high when zinc is low. Copper will increase in serum when there's inflammation/ infection.
    It may still be low in tissues.

    Just a thought.
     
  5. Misfit Toy

    Misfit Toy Senior Member

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    My zinc in every test is super low. It's always low. Worked with a nutritionist who diagnosed me with high copper and low zinc and pyroluria.
     
  6. lafarfelue

    lafarfelue Senior Member

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    Oh dear, this sounds really frustrating for you. I'm sorry you're going through this... hopefully you're getting closer to figuring out what might help you though? I'm thinking of you!

    My Mum went through many years of being very intolerant to salicylates. She was stuck eating green beans for a long long time. And slightly overripened green pears were the only fruit she could eat for quite some time, I think..? (She had no issues with fructose itself though.)

    This is a pretty good list of what veggies work for this kind of reactivity: http://salicylatesensitivity.com/about/food-guide/vegetables/ There are some decently nutritious foods in these lists, I hope that you can still tolerate a decent number of these.

    On a positive note, my Mum still needs to pay attention to what she eats, but she is no longer as reactive to salicylates as she was. It took a while (years) for her system to start behaving itself, but once she got a good handle on what was activating everything, things became quite a lot better for her. Keeping my fingers crossed for you that you have the same, over time.
     
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  7. Crux

    Crux Senior Member

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  8. Mesurfer

    Mesurfer

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    Have you checked your kidneys. Poor kidney function can make you itch...
     
  9. Misfit Toy

    Misfit Toy Senior Member

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    Hi guys...not looking for more info on Histamine. I am truly so over reading about histamine. I am trying to lean toward a low salicylate diet...very different than the histamine situation. @Crux -the low histamine diet and the low salicylate diet are very different..you need to know this.
     
  10. Misfit Toy

    Misfit Toy Senior Member

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    Thank you for your response! I wasn't aware that green beans are okay for low sal. diet. Very good! I can't have pears, but that's okay. TY.
     
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  11. lafarfelue

    lafarfelue Senior Member

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    No problems at all. Anything to help ease the burden and stress even a little. :hug:
     
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  12. Chelby

    Chelby

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    What about oats? they are low salicylate, low histamine and gluten free.
     
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  13. Misfit Toy

    Misfit Toy Senior Member

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    Yes, I am on oats. Loving my oats.
     
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  14. Strawberry

    Strawberry Senior Member

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    I have no knowledge of salicylate at all, but I think the reasoning behind no beef is the way it is raised. Supposedly beef that is 100% grass fed naturally and organic, antibiotic free etc is safe, but it is near impossible to find. And unaffordable. Chicken is easier to raise organically and in the fields. I have also heard that all lamb is organic and safe, but definitely may not be safe for you.

    Anyway, my one suggestion that I wanted to see if you are aware of, is sprouted peas. Apparently they are very high DAO (to reduce the histamine) up to 10 days old and sprouted in the dark. I learned about that tip from Yasmina and if I remember right, she is also unable to eat salicylates?

    My poor advice aside, I will be following this thread as I also get body itching, although it is normally tolerable. But it can at times keep me awake at night. Hydroxyzine is my go to when that is out of control. Ketotifen helps keep it controlled, although I know you are unable to take that.

    Wishing you the best of luck and hope that salicylate avoidance will help.
     
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  15. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Hi @Misfit Toy, I wrote this, then forgot to post it...oops...

    I could never understand why I felt better when I ate crap, until I realised I have a salicylate sensitivity. High salicylate foods definitely make me more irritable, and spaced out, insomnia and restless legs are worse too.

    Do you have an aspirin/NSAIDs sensitivity/allergy - does aspirin give you asthma? This can be a huge clue. Have you heard of Samter's Triad?

    I also have trouble with high sulfur foods and sulfites. Similar symptoms - sulfites make me itch, and wheeze.

    A lot of gluten free flours are bleached with sulfites, and some foods like canola oil apparently contain naturally occurring sulfites.

    Does the spread you reacted to contain canola? I thought I had a sulfite free diet, but lots of products have hidden sulfites that aren't labelled.

    I don't follow a low salicylate diet as it's too limited, but just a much much lower one than before as I was eating a ridiculous amount of veggies and fruit a day, in an attempt to make myself better.

    My (limited) understanding of the sulfur/sulfite/salicylate thing is that it's a threshold problem, one can't break them down as quickly and efficiently as a normal person, so they build up in your system.

    I try not to have high salicylate foods at night, as they make my insomnia worse.

    I read ages ago that high copper can be a cause of salicylate/sulfite sensitivity, because it depletes zinc and other nutrients needed to break them down - via the PST pathway in the liver. I don't know if that theory is scientifically valid, but I do think I have high unbound copper.
     
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  16. Misfit Toy

    Misfit Toy Senior Member

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    @antherder -wow..thank you. YES, my problem is mostly with veggies and fruit. I don't eat fruit anymore which can't be good for you with the amount of minerals in fruit. Vitamin C, etc.

    I love veggies, so originally I took them out and felt better but was still itching. I added Brussels sprouts, celery and green beans back in. I am grateful for them and I love Brussels. I will try iceberg but no nutritional value at all.

    My diet is better now. I have about 13 safe foods and many proteins and animal meats. Lamb, beef, chicken, turkey so I am grateful. I can eat eggs. I have those veggies. Tonight I had a baked potato and I can eat rice, brown rice, millet, quinoa and oats. So, this is good.

    I tried adding in nuts and did terrible but I am okay with macadamia nuts.

    I have high copper. This is interesting, because yes, that's me. I have pyroluria. So, I take zinc, but probably not enough.

    So, I m fine on canola. Zero problem with canola. I have not had an aspirin in years. YEARS. Aceteminophen is not aspirin....right? I can't remember.
     
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  17. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Yeah, I think that's paracetamol, which is different. But don't quote me on that...

    Glad you have some safe foods to eat. Baked potatoes...yum... I think peas are low salicylate, but high copper. I eat them anyway, cos I like them. :)

    A lot of personal care products are high salicylate too, like mint toothpaste, essential oils. Most herbs are high sals.

    Do you mean high unbound copper, or high bound copper (ceruloplasmin)?

    The interesting thing about salicylates is that they are apparently the plants natural pesticides, designed to stop pests devouring them and diseases killing them.

    That's why they are more concentrated in unripe fruit, because the plant doesn't want any critters eating the flesh and distributing the seeds before they are mature. (Peeling the fruit will significantly reduce the salicylate level.)

    Unfortunately, organic veggies and fruits can have more salicylates than the sprayed stuff, as organic farmers tend to use naturally disease resistant plants.

    Fascinating stuff, in my opinion, but really annoying also!
     
  18. Strawberry

    Strawberry Senior Member

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    @Misfit Toy Was wanting to see how your itching is doing? Did removing salicylates help? I had stopped the ketotifen and no longer could sleep due to itching, wondered if you had figured it out yet.
     
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  19. Misfit Toy

    Misfit Toy Senior Member

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    No. No figuring it out yet, but I have added more foods and honestly, I am better. The ketotifen made me sick as a dog.
     

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