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  1.  
    I recently saw a Mast Cell specialist and she said I looked identical to many of her other patients, only much worse off. She saw me symptomatic and asymptomatic (fasting & on prednisone) and was absolutely amazed at the difference. She asked if I noticed a reaction to salicylates without me bringing them up.

    Waiting on the blood results, but there are far too many boxes to tick for this to be a coincidence. I think most of us have some type of Mast Cell disorder, and salicylates are causing these cells to break down and release all types of chemicals into our blood stream which explains our array of symptoms. I have some red specks on my chest/shoulder that no dermatologist has ever been able to diagnose, and are likely mast cell infiltrate.

    I'm not buying Salicylate Sensitivity is an isolated intolerance, it's far too disabling. I can tolerate one thing for sure, fish. Canned fish, baked fish, it really doesn't matter. And water.

    Prednisone is a godsend; within minutes all of my symptoms disappear. That's not because the prednisone is lowering my salicylate levels; the reaction happens FAR too quickly, it's reducing inflammation.

    The question is what to do about it? How many of you have actually religiously tried Ketotifen? Cromolyn Sodium? H1/H2 antihistamines?

    Salicylate Intolerance (chemical intolerance) is a problem with mast cells. Get your tryptase checked. Has anyone else gone down this route and been diagnosed with Mast Cell Activation, which seems to be far more common than previously thought? I haven't been put on Ketotifen or Cromolyn yet, and I'm really curious if anyone has any luck with them.

    My worst symptom seems to be a shutdown of my autonomic nervous system. My skin, mouth, and eyes dry out because they stop producing moisture. I get told I'm a pretty good looking guy, but when I'm symptomatic it really.... it's terrible, on top of angioedema.

    All the triggers you guys constantly talk about. They're on these lists for Mast Cell Disorders:

    http://www.mastocytosis.ca/symptoms.html
    • CommentAuthorlindyd
    • CommentTimeSep 30th 2016 edited
     
    I worked out some time ago that my own Salicylate Sensitivity was just a part of a Mast Cell disorder and have been taking ketotifen for some years now.
    For me it is a "wonder drug" which has allowed me to live a semi "normal" life.
    I can now eat a certain amount of moderate sals and am no longer so sensitive to
    airborne chemicals such as perfumes/laundry products which used to cause me such issues.
    I can now eat out and spend time time with people who are smelling of toxic chemicals!
    I am not cured by any means...the ketotifen just takes the edge of my symptoms and I have a "new normal".
    I have no formal diagnosis other than one of "possible salicylate sensitivity" from
    a hospital allergist and my Rhuematologist has "possible undiagnosed Mast Cell Disorder" on my notes.
    In the UK the understanding of Mast Cell Activation Disorder/Mast cell Activation syndrome is still very limited and most doctors/allergists will not diagnose it. They only understand Mastocytosis.
    Having said all this I feel that there is a "true" stand alone Salicylate Sensitivity which is part of the Triad in Sampters Triad..SS, Asthma and Polyps. I have said for some time on this forum that I feel that there are two catagories of people here.. those with the Triad and those like myself with SS as part of a wider issue, most probably a Mast Cell Disorder.
    But I am not a medical expert.. just an expert patient as the medical professions call us nowadays :o)
    ps my Tryptase was normal.. however I was taking the ketotifen at the time and refused to stop taking it for the test.. so not necessarily a useful test!
    • CommentAuthorklrskies
    • CommentTimeOct 29th 2016
     
    i have had 2 tryptase blood tests so far, both at 19. i get tested every 6 months. I have had 2 bone marrow biopsies with a diagnosis of clonal mast cell activation syndrome. I am prescribed cromylyn sodium and H1 and H2 antihistamines.
    The cromylyn sodium allowed me to eat a few things withoutso much diarehea and colon spasms. Its not a drug that allows me to eat anything, but Im much more comfortable, able to eat select foods with minimum drama. After taking it for several months, I noticed that some foods that I should have been able to eat caused me problems...long nights with several trips to the restroom. I started looking for clues, as we must be pro-active with this disorder. 2 things that i became aware of is that i seem to be intolerant of many things on the Salicylate Intolerant list too. I also wanted to try Ketotifin to see if it helped me. I ordered some Ketotifin online and began a modest doseing of it. I noticed it seems helpful with bowel flares, Nasal Congestion and twitching eye, Aches and pains, Sleeping more thru the night, lowering my anxiety level...my favorite time to take it is nighttime. Im trying to pay attention to eating low salicylate foods as well as low histamine. Like many people, i can always eat eggs, rice, chicken, but am always looking to expand my diet. A nice addition is Danalion coffee. I can add heavy cream and sugar and really enjoy it since I cant enjoy coffee or tea anymore. I have to get roasted dandalion without the added ingredients...chicory is often added but its high in salicylate.
    • CommentAuthorcjeanbrown
    • CommentTimeNov 18th 2016
     
    Hi everybody,haven't participated in awhile,my symptoms haven't been bothering me but this discussion caught my attention because of the mention of dry mouth skin etc. My mouth dries out so bad it's painful.Went through the whole Rheumatologist Sjogern Syndrome testing but never could confirm I had that through their tests.Thats my biggest problem now.I don't get the swelling lips and throat anymore but my feet still swell and feel like they are on fire when I eat certain things. Could I have just moved on to new symptoms with the dry mouth? I take medication for it to produce saliva.Its rough on your teeth and feels like your mouth is always blistered.
  2.  
    Ten years after discovering my SS, I'm now learning about Mast Cell Activation Syndrome. I'm convinced that's my problem. It's the only diagnosis that would explain ALL of my symptoms. The problem is finding a doctor that understands it enough to diagnose and treat it. The closest I've gotten to a diagnosis is an allergist telling me I have "twitchy" mast cells, but he doesn't know why and doesn't know what else to do about it. I'm still searching for help. I'm at the point that the symptoms have become debilitating.

    How did you find a doctor?
  3.  
    I finally found a doctor who really understands MCAS. He's almost 4 hours away from where I live, but it was worth the trip. He was able to diagnose me as having MCAS mainly from my medical history, but is waiting on test results to decide the best treatment plan.

    This is the first doctor I've ever heard speak intelligently about salicylates. He said there are a lot of overlapping foods when it comes to high sals and those that trigger mast cells. So it's easy for someone to think they are intolerant to sals in food, when in reality it's mast cell activation. He didn't dismiss the possibility of having both issues, but it can be difficult to determine sometimes.
    • CommentAuthorlindyd
    • CommentTimeMar 5th 2017
     
    Which country are you in pruittmama?
  4.  
    I'm in the southeastern United States. I went to a doctor in Atlanta, Georgia. The doctor is an allergist, Dr. Theodore Lee.

    Dr. Lawrence Afrin is the author of "Never Bet Against Occam", a book on Mast Cell Activation Disease. His assistant's email is easily found on the website of the university hospital where Dr. Afrin practices. I thought it would be a shot in the dark to get any help from him. But both he and his assistant responded the next business day. Among others, they both suggested Dr. Lee and thought he would be the best option for me.
    • CommentAuthorlindyd
    • CommentTimeMar 13th 2017
     
    Have you read the Dr Afrin book pruittmama? What do you think of it..I have the book and the Mast Cell Community rave about it and I had great hopes when I got it that it would be really informative and helpful but I was totally underwhelmed and disappointed when I read it and found he waffled a lot and seemed to put every symptom in every patient he has ever seen down to MCAD...
    • CommentAuthorpruittmama
    • CommentTimeMar 14th 2017
     
    Yes, I purchased and read it last April. Personally, I found it very beneficial.

    Perhaps taking into account where we each were in the MCAS stream of things would explain why our opinions differ...at least in part? When I read it, I had spent almost a year in pain, seeking doctors' help to no avail, finding no medication or supplements to offer relief, and eventually feeling as if no professional knew or cared about what I was experiencing. Dr. Afrin's explanation of MCAS offered, not only an explanation of my current symptoms, but also my entire medical history. I learned about the simple addition of OTC H1/H2 antihistamines and started getting relief from some of my symptoms. It gave me hope that I may actually find relief and not have to live the rest of my life in pain. The book educated me as to what to ask the doctors that I saw during the following year. And I feel sure that I'll refer to it even as Dr. Lee prescribes a treatment plan so I can continue to play an active role in my own care.

    In regards to the 'every symptom...put down to MCAD', it seemed that either the testing of MC mediators or the success with treatment for MCAD eventually revealed that his suspicions were proven true with each of his patients. Perhaps his belief that MCAS is actually very common could account for his being "quick" to suspect it? And I would also take into consideration that his patients were often referred to him by other specialist who already suspected MC involvement.

    I'm sorry you didn't find it helpful. Is your health stable now, or are you still searching for things to improve it? I remember you were taking Ketotifen. Are you still on it? Is there anything more you use as an MC stabilizer?

    I've always regarded your comments as very reasonable and respectful. I hope my thoughts on Dr. Afrin's book come across in the same manner.
    • CommentAuthorTalismanJ
    • CommentTime9 hours ago
     
    Hello to all,

    I would respectfully disagree that salicylate sensitivity is caused by MCAS whereas some people do have MCAS, I do not and I cured my salicylate sensitivity using my natural methods in 5 1/2 months.

    Here is my ebook link: https://www.amazon.com/dp/B06W9GY4FM

    Dietisarubixcube wrote:

    "I'm not buying Salicylate Sensitivity is an isolated intolerance, it's far too disabling. I can tolerate one thing for sure, fish. Canned fish, baked fish, it really doesn't matter. And water."

    Being a male you should maintain a 9 to 1 zinc to copper ratio whereas if you were female you should maintain a 4 to 1 zinc to copper ratio. This would alleviate most of your inability to tolerate most common foods - meat, eggs, grains, etc.

    Also, you should increase your molybdenum intake from food.

    Here is a website with a complete list of foods and drinks that have molybdenum in them in varying degrees.

    http://wholefoodcatalog.info/nutrient/molybdenum/nuts_and_seeds/high/

    This link will take you to one of the lists, then from there scroll down and you will be able to access the other lists of foods.

    I have added Rye bread to my diet and it is an excellent source of molybdenum.

    Also, most people who have an issue with sulfites usually have an issue with bad breath in some form - this is because sulphur is a cause of bad breath and sulfites are a form of sulphur. Getting the proper amount of molybdenum from your diet will curb the bad breath and will also alleviate some bloating in the stomach area as sulfites will also cause bloating.

    The body only needs a small amount of the trace mineral molybdenum which we can get easily from our diets. The problem is when you have a high copper diet the molybdenum gets used up rapidly by combining with the copper not the sulphites in our bodies. Men are supposed to have a 9 to 1 ratio zinc to copper diet and women are supposed to have a 4 to 1 ratio zinc to copper diet. Unfortunately a majority of the healthy foods they promote today (sweet potato, avocado, etc.) are high in copper and low in zinc coupled with the demonizing of eating red meat (best most absorbable zinc source - you can have 6 to 8 servings a week spread out) you have many people with high copper diets. The dark meat of the chicken (legs, wings, thighs) would be your other source of zinc as they have 19% zinc per leg, thigh, etc. A hamburger has 54% zinc.

    Lower your copper intake in your diet, lower your intake of high sulphite foods and preservatives such as maple syrup, brown sugar, etc. and include green beans, oatmeal, 2% white milk (not chocolate as chocolate is loaded with copper) buy in glass bottle or jug not plastic (as the molybdenum will be used up attaching itself to the toxins seeped into the milk from the plastic jug), vanilla custard (Culver's Custard, etc.) and some kidney, black, etc. beans in your diet and you will get the results you are looking for. Remember too much molybdenum (usually from taking too many supplements) can be toxic to the body.

    Go to World's Healthiest Foods website WHfoods.com and they have a list of 100 healthiest foods where they give you a breakdown of the vitamins and minerals in a serving of food - this will help you rebalance your diet.
    • CommentAuthorTalismanJ
    • CommentTime9 hours ago
     
    Also, minimize the nightshade family - white potato, tomato, etc. from your diet as the solanine in these foods accumulates in the thyroid gland interfering with the thyroid gland's functions. Solanine is removed from the body only thru feces not urination.

    Scary and surprising you can tolerate any kind of fish as most fish are loaded with toxins just like sea salt is loaded with toxins - unless it's wild salmon from Alaska as an example.

    Please note some of these toxins are nerutoxins that affect the brain thus also might be the root cause of your problems and not MCAS.