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  1. #1
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    Been told most IC sufferers are misdiagnosed, and it's Mast Cell Activation Syndrome

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    Hi All

    Just wanted to share my story of thinking I had IC over the past six months. After lots and lots of pain and spending a fortune on specialists - and due for a laparoscopy under general anesthetic as was advised that I have IC - I then saw another doctor in London who is the UK's doctor leading urogynecologist.

    I told him my history with all my symptoms (going to the toilet every 30-60 mins, pelvic pain, pain with sex, burning after urination, burning in vagina etc). Also my issues with pelvic floor muscles + pain (i've been on muscle relaxants for past three months).

    He then asked to have a look at me, and whilst I started to walk over to the bed to undress, by my surprise he said he wanted to check my skin round my neck instead. He said I had a very faint rash around my neck (I couldnt see it) he then did a little scratch on my arm, and he showed how it came up quite swollen - which is not normal.

    After taking a look at me internally, he then said he believed i was suffering from a histamine reaction / or 'mast cell activation syndrome'. A UTI that i had six months ago, despite being treated with antibiotics, continued to create inflammation due to my body making too much histamine. I read a lot about people thinking IC being triggered by a previous inflection so this made sense.

    He prescribed me a strong dose of ranitidine (like zantac) and antihistimines (brand name clarytin) twice a day, and also put me on an low histamine diet - no fermented foods, dried meats, shellfish, tuna cheese, alcohol, vinegar, chocolate, certain fruits (citrus, berries, pineapple, papaya), tomatoes, avocados and most importantly pulses (lentils, chick peas, peanuts, any legume beans basically). Similar to IC diet but more specific, and many things that not on IC one.

    After just five days I feel better than I have done in months. He told me that he sees over a thousand people a year with suspected IC and he has only diagnosed it about three times. He said it's incredibly rare and he thinks most IC sufferers are misdiagnosed.

    So anyone reading this it's worth seeing if you can find someone who specialises in histamine intolerance / or over activation of histamine. It's a very new way of looking at things, most docs don't understand - but now I'm thinking it makes sense how I read some IC sufferers get relief from anti histamines and Quercetin etc. and of course muscle relaxants but the pain is coming from inflammation in the bladder. If you cant get to a specialist then you can find the diet online and buy anti histamines and rantidine over the counter.

    Anyway good luck with your journey and hope this info helps some people!
    Last edited by AnnieBel; 01-14-2018 at 03:58 AM.

  2. #2
    ICN Member Songbird's Avatar
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    Re: Been told most IC sufferers are misdiagnosed, and it's Mast Cell Activation Syndr

    Thanks for posting. Itís always helpful to hear from top specialists what their findings are.
    I also have mast cell IC and the doctor who diagnosed it was a leader in his field over 25 years ago.
    Thatís why hydroxyzine is such a blessing for those of us who have that repsonse.

  3. #3
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    Re: Been told most IC sufferers are misdiagnosed, and it's Mast Cell Activation Syndr

    Hi! I am so greatfull you wrote this. My story is exactly the same then yours. I went to see the urologist on Tuesday and he planned a ton of exams for me. I spoke to him about your diagnostic and he said I could try antihistaminic while waiting for the exams.

    Today, 2 days after taking my first dose of antihistaminic, I feel like a brand new girl!! Tell me, on your side, are you still feeling better? Did you stop the antihistaminic?

    Thank you soo much : your comment litteraly save my relation with my spouse, my job, and my life.

    Send you bigg love!

  4. #4
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    Re: Been told most IC sufferers are misdiagnosed, and it's Mast Cell Activation Syndr

    Hello

    Amazing to hear from you and your story!

    Mine has been a bit slower, but three weeks in and I'm 75% better. My histamine probs have been made a lot worse with stress (huge changes in life, mother sick, moving continents) and pelvic floor syndrome. But I'm very nearly on the mend with the diet, relaxation techniques and seeing a pelvic floor specialist. My bladder pain puts my pelvic muscles into spasm so just need to manage that now.

    My urinary frequency has gone down from 25+ times a day to less than 10 and most nights i sleep right through. so the low histamine diet and anti histamines def works.

    Anyway so happy to hear your success. IC is incredibly rare I've been told and most people don't have it. Let's keep spreading the word
    A

  5. #5
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    Re: Been told most IC sufferers are misdiagnosed, and it's Mast Cell Activation Syndr

    this is very interesting.... I take an anti-histamine and it definitely helps me. If I do have mast cell activation and not IC would high impact exercise bother me? Because that is definitely one of my triggers

  6. #6
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    Re: Been told most IC sufferers are misdiagnosed, and it's Mast Cell Activation Syndr

    I dont know i'm afraid.. I haven't been able to do high impact exercise for a while but going to try. in meantime i find yoga really helpful for my pelvic floor. how did you know you had mast cell activation? I had test for histamine but i wasn't intolerant. still creating too much though.

  7. #7
    ICN Member
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    Re: Been told most IC sufferers are misdiagnosed, and it's Mast Cell Activation Syndr

    I haven't been diagnosed with mast cell activation , only IC. I was just asking if mast cell would produce pain with exercise because that doesn't make sense to me. It does make sense that known allergens such as chocolate or soy would but a lot of us are also very sensitive to acid. IC is still a mystery disease to me and to many doctors i'm afraid.

  8. #8
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    Re: Been told most IC sufferers are misdiagnosed, and it's Mast Cell Activation Syndr

    Thank you for this, very interesting, as my IC was triggered from an all over body allergic reaction to grass at a park being cut and blown by blowers. My body broke out into a huge rash, was misdiagnosed as scabies, treated for it but got worse, then was properly diagnosed and had to have steroids to clear up the allergic reaction. After the steroids, the bladder pain started. I've been on elmiron since 2010. It does help a lot, and I do take Zyrtec or Claritan. Would you share the dose of Claritan taken twice per day and the dose of the Ranitidine?

    Last question, are you to be on this for life, or can you go off the diet once your bladder is calmed down?
    Hugs to my IC pals!

    -Michelle
    Wife and mom of 2 kiddos (11 & 13). I am 51 years old
    Diagnosed with IC in October of 2010 after a severe allergic reaction. I was 43 years old with a 3 yo and a 5 yo.
    Elmiron instills gave me 2 full months of total remission until January of 2011
    Started Elmiron on 10/22/2010 (200mg twice per day)
    Started Elavil 20 mg. in 2/2011 - 8-2012
    Started 25 mg. Hydroxyzine in July 2011 - 10-2012
    Prosed DS as needed for flares (generic is called Hyophen - much cheaper and works but I prefer Uribel)
    Tums with any possible caution foods, now I take nothing but Hyophen if needed
    Started running in February of 2011, yoga in 2012 to current
    Lost the constant "urge to pee all the time" feeling in April 2012 after starting Detrol LA (took 4-6 weeks to kick in)
    No longer using any supplements
    Current meds: 200 mg elmiron - that's it. I eat pretty much anything. Stress triggers flares!

  9. #9
    ICN Staff ICNDonna's Avatar
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    Re: Been told most IC sufferers are misdiagnosed, and it's Mast Cell Activation Syndr

    Many people with IC feel better with antihistamines. I did a brief search this morning and found a drug glossary with the following information on antihistamines:

    "Antihistamines have the ability to reduce secretion of neurotransmitters and neuropeptides that could trigger mast cells or damage the bladder directly. Antihistamines also have anticholinergic properties, which help reduce frequency of urination. The sedative properties reduce nocturia.

    "Histamine is one of the substances that are released by mast cells and can cause pain & vasodilation. By blocking histamine release symptoms of IC can be reduced. However, mast cells are not found in bladders of all IC patients."

    I hope this helps with understanding the "why" antihistamines can be effective.

    Donna
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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.
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  10. #10
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    Re: Been told most IC sufferers are misdiagnosed, and it's Mast Cell Activation Syndr

    Hi there

    Thanks again for your post,, i'm having a bit of relapse Think probably caused by getting a UTI and then thrush. feel like i've gone back to square on and I and can't get follow up with the doc for another month. can i ask what antihistimine you are taking?
    Thanks
    Annabel

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