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  • HIT (Histamine Intolerance Syndrome)

    Anyone else got this & managing it successfully?
    Symptoms are:

    1. Allergic type reactions: skin rashes, sinus drip or stuffiness, diarrhea, constipation, vomiting, anxiety/panic attack, skin flushing, urinary frequency or burning.-- after eating certain foods or meals, (high histamine foods or histamine releasing foods), Exposure to animals, emotional stress. Many high histamine foods are also listed as IC trigger foods.

    2. Reactions do not occur as quickly as traditional allergic reactions, which usually occur right after ingesting the offending food, but can happen 12-20 hours later

    3. Traditional allergy tests (skin & blood) in the US come back negative.

    4. Some research says this condition is caused by lack of an enzyme (DAO) that processes histamine in the body. Unfortunately all the DAO supplements in the US include vitamin C, because that combination enhances the DAO, but with the IC, I can't take it. I read several articles that say amitriptyline (Elavil) can lower or block the DAO in the bodies of patients, often those who may already be genetically prone to DAO deficiency. I talked with my dr, but my IC is so severe, neither one of us was ok with stopping the amitriptyline.

    Got diagnosed with this 2 weeks ago and I'm really struggling, with an intermittent rash on my neck & chest, itching all over my body, a continuous IC flare from hell. I've only had 1 night this past week where I've gotten more than 3-4 hours of sleep. Really struggling to go to work & becoming more upset daily.

    Today will be Day 3 on an elimination diet. Breakfast is oatmeal w/1T maple syrup & water, lunch is chicken (pan-cooked in canola oil)/white rice/ zucchini cooked in canola butter, water. Dinner same as lunch, but with broccoli instead of zucchini. I have to follow the IC diet strictly, also a lox oxalate diet due to severe vulvodynia. I'm also temporarily cutting out most dairy, eggs, wheat since they are also common allergens.

    I am so sick & so desperate, that when I came home after being out Saturday feeling a bit better & then developed the neck rash within 15 min in my home, that I called my godfather and asked him to take my cat and her things for awhile, so I can purge the apt of allergens as best as I can. I was allergy tested & it showed no cat-allergy, but the same tests also came back negative for things I've had severe reactions to (peanuts, fish, avocados, bananas, latex).

    To try to clean the apt of pet dander, I got a carpet steam/heat cleaner at Walmart ($135) yesterday, I'll be using it on carpet, throw rugs & futon this week. I thoroughly vacuumed the bedroom, cleared wiped clean all flat surfaces, took books out of bookcase, dusted them & shelves completely, changed out air filter on air cleaner, wiped baseboards. Plan to shampoo carpets Tuesday after work. I threw away the throw pillows & chair pads from the living room as they can't be washed & Walmart had the chair pads for only $5 each.


    The lack of traditional positive test results, the clustering of offending foods, and the later than usual timing of response is what tipped off the allergist to this syndrome.

    I was fortunate that the allergist saw the rash on my neck, listened carefully to me, and was so wanting to help me that he researched what it could be & came up with HIT, which has not been researched in the U.S., mostly in Switzerland & the UK.

    Anyone got any suggestions for dealing with this? Or on how to get as much dander out of the apt as possible? I'm heartsick about possibly having to find a new home for my cat, but the research says to reduce as many histamines as possible and I am desperate. The plan is to keep her at my godfather's house, thoroughly clean, see if I get better, bring her back in awhile & see if I'm worse again.

    I'd consider moving, but rents have gone completely out of control here in the SF Bay Area. My rent was raised $150 a month last year, just got another notice on Sat, it's going up another $150/month starting January. I was horrified since that makes it $1670 plus $50 for water/trash, $180 for cable/internet/phone. But when I looked online, my apt is still under market value, it's in an average/middle class neighborhood, and to drop the rent I'd have to move to a pretty bad area. My IC is too severe to manage a commute, so I'm limited.

    Any suggestions or words of encouragement would be greatly appreciated! I'm very discouraged right now, desperate to get better because I'm running out of stamina & I still have 8 weeks of school (teacher) before summer vacation.
    Kadi

    -------------------------------------------------------------
    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

  • #2
    Re: HIT (Histamine Intolerance Syndrome)

    After reading your message closely, I do have one suggestion. There are a very few people who find oatmeal is a trigger, but there are that few --- you might try some cream of rice cereal for a few days to see if that makes a difference.

    Gosh --- I can't believe there are only eight weeks of school left. It seems like such a short time ago that school was just starting.

    Sending gentle hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

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    • #3
      Re: HIT (Histamine Intolerance Syndrome)

      I'm sorry to hear you are dealing with another health issue. Goodness. Just reading about all the cleaning you're doing wore me out! Where do you find the energy?
      I came across a couple of HIT tools that might help you if you don't know about them already:

      Histamine content app: https://itunes.apple.com/us/app/food...es/id419098758

      Symptom tracker app: https://itunes.apple.com/gb/app/mysy...ign-mpt=uo%3D4

      "When you gotta go, you gotta go!"

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      • #4
        Re: HIT (Histamine Intolerance Syndrome)

        I wish I could be of help, but I just wanted to say I'm sorry that you are going through this Kadi and I hope you find an answer soon. I can only imagine how frustrating this must be:-(
        "Where there is hope there can be faith. Where there is faith, miracles can occur."

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        • #5
          Re: HIT (Histamine Intolerance Syndrome)

          hugs to you! I'm pretty allergic, not that bad, but i do regularly break out in a rash for no reason (like a trip to the supermarket) in random aisles. no answers... that is hard work to try to make your house safe and figure out food whilst eating on a limited diet.

          May not be what you want to hear, but in case it helps, just wanted to add that seeds (i.e. the oil) can be another trigger. I've gone on an autoimmune protocol diet (IC friendly) and my final cuts (after having already cut out all grains, dairy, beans, pulses, sugar) + flaring veg & fruit, were eggs, nightshades (only ate odd bite of potato), and nuts + seeds.
          coconut oil is pretty safe for most people & looks like low oxalate, but we are all different i know!
          also have you come across the Low Histamine Chef? She wrote about dealing with IC, and cooking low Oxalate & Low Histamine so maybe of help.
          http://thelowhistaminechef.com/low-o...-missing-link/

          i really hope that you find some balance soon! the theory with the AIP is that if you can calm the inflammation & heal the gut at the same time, the body stops attacking itself and autoimmune disorders & inflammation go into remission.
          I'm wondering if it is the same with yours, that once you can calm your system down it'll get less sensitive. I really hope it does!

          Comment


          • #6
            Re: HIT (Histamine Intolerance Syndrome)

            I am a very allergic person (so is everyone in my family, must be genetic). I get sick to my stomach, hives, mouth swells, terrible bladder pain (my doctor calls it allergic bladder), I have even gone into anaphalatic shock. I have had the skin prick test and I am allergic to many foods. IF I am able to eliminate everything I am allergic to, I feel much better. The biggest challenge is dairy--I am very allergic to dairy and it is very hard to eliminate. For things that the doctors cannot test for I have to play detective to figure out what I am allergic to. I keep a food dairy and that has helped me figure out allergens. One thing I have figured out I am allergic to--Propylene and Polyethelene Glycol. These are chemicals in many household items (Hand sanitizer, cremes, shampoos, cleaners, etc) and many foods and medicines. I figured this out because I kept having a rash and had to look at the ingredients of everything i used and finally traced to down to these chemicals.

            I am terribly allergic to pet dander and probably would have to move out of a house where a cat had lived.

            I have to carry an epi pen at all times because my reactions can be so severe.


            Keep working at it and I am sure you can figure out your allergens too. I feel so much better now that I have figured all the allergens out and have eliminated them.

            Jo Ann

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            • #7
              Re: HIT (Histamine Intolerance Syndrome)

              I just saw this come up and also wondering that...i'm being treated with mast cell blockers/ low histamine diet and it's really helping! my urologist finds a lot of his patients respond well to this protocol...

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              • #8
                Re: HIT (Histamine Intolerance Syndrome)

                Hi Kadi,
                How are you feeling these days? I keep coming across mast cell activation and histamine with IC. Did changing your diet or meds help? How did you get diagnosed with histamine issues? I live in the bay area too, so I'd love any information you're willing to share. I hope you are doing better.
                "Where there is hope there can be faith. Where there is faith, miracles can occur."

                Comment


                • #9
                  Re: HIT (Histamine Intolerance Syndrome)

                  JVR are you on the mast cell / histamine intolerance FB group? you'll find good doctor recommendations on those groups

                  Comment


                  • #10
                    Hi Kadi,
                    I see you haven't been on the boards for a couple of years. I'm dying to know if you ever treated your HIT symptoms with any mast cell stabilizers. I know your Mom has IC too so you have a similar situation to me in that my daughter has IC too. I've been thinking of looking at treating IC with mast cell stabilizers and wondering if this avenue would be worth exploring. If you see this, I'd love to hear how you treated this and if it helped the IC symptoms at all. I hope you're doing better these days:-)
                    "Where there is hope there can be faith. Where there is faith, miracles can occur."

                    Comment

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