Conditions, Interstitial Cystitis

Is it Really IC or could it be Mast Cell Activation Disorder?

In many cases of interstitial cystitis, mast cells are raised in the bladder and play a big role in the unpleasant symptoms of an IC flare. Modern medicine likes to put names on symptoms but sometimes this may not describe the real issue well.

Interstitial cystitis is often a diagnosis of exclusion and similar to syndromes such as Irritable Bowel Syndrome (IBS) it is a functional disorder with an array of symptoms. The condition in itself could even be a symptom in itself. In the case of raised mast cells the question is whether it is really IC or could it be mast cell activation disorder (MCAD)?

In order to recover from chronic illness, finding the root cause of the illness is key. The question here is: why are the mast cells in the bladder?

What is Mast Cell Activation Disorder?

Mast cells are a type of white blood cell that are found on most human tissue, and especially where the body interacts with the environment. Mast cells play a big role in allergies. I have written all about mast cells here.

In mast cell activation disorder, mast cells (a part of the innate immune system) become hyperactive, releasing chemicals such as histamine that can affect every organ system in the body.

Mast cells are designed to sense invaders and as a response release chemicals to deal with them. But in the case of allergies this response is triggered to harmless invaders (such as pollen).

In MCAD there is an accumulation of mast cells that are either genetically altered (in this case we talk about mastocytosis) or there is an abnormal activation of mast cells, with the result of their chemicals being released when they shouldn’t be (mast cell activation disorder). This type of mast cell disorder is more common, although it is hard to diagnose and guidelines have only been published fairly recently.

MCAD generally presents as an allergic/inflammatory condition that can affect different body symptoms and express as IBS, depression, skin conditions and probably interstitial cystitis.

One sign could be an intolerance to histamine rich foods (aged foods).

MCAD and Interstitial Cystitis

As I have explored in this previous blog post, IC is often presents with a raised number of mast cells in the bladder tissue.

This could simply be a result of the inflammation in the bladder. In this case, IC may be the disease and mast cells a symptom of the disease.

But what if IC is a symptom and the raised amounts of mast cells are the root cause? The mast cells could be there for a different reason altogether.

In a patient that also suffers from an array of allergic conditions and IBS (amongst others), the bladder may just be another organ that is affected by an underlying root cause.

Conventional medicine likes to categorize diseases and label them. In functional medicine on the other hand, one would look at the common denominator of all the symptoms.

Chronic disease at the end of the day is a mismatch between our genetics and our environment that causes body systems to fail.

So what if interstitial cystitis is just a symptom and not a disease in itself? Would it not change the way we look at treatment options?

What causes Mast Cell Activation Disorder?

I am interested at looking at root causes of bladder conditions because I strongly believe that this is the way to tackle them. So in the case of IC my question is: why are mast cells raised.

Here are some potential causes for mast cell activation:

  • Chronic infections: mast cells are part of the immune system that are designed to attack invaders. Constant infection could be one reason for chronic mast cell activation. This may be in the gut or in the bladder, or both. There is evidence that chronic hidden infections lead to the symptoms of IC (here and here). Parasites, bacteria, fungi and viruses can all cause mast cell activation [1, 2, 3]. In my opinion, this is one of the likely causes of mast cell accumulation in the bladder.
  • Allergies: An over-reactive immune system can react to harmless particles such as pollen and foods, causing an allergic reaction. Mast cells play a role in allergies. Maybe the mast cells in the bladder are reacting to foods and maybe IC is just the symptom of allergies?
  • Heavy Metals: Heavy metals have been shown to activate mast cells [4]. Therefore, heavy metal toxicity may be a reason for chronic activation of mast cells.

I have looked at some potential treatment options here and will explore more options in future blog posts, so stay tuned.

Now I’d like to hear from you: Are you suffering from IC and allergic conditions? Do you thinks MCAD could be to blame? Let me know in the comments.

Pin it for later:


Kresser, Chris Could Your Histamine Intolerance Really Be Mast Cell Activation Disorder? November 2016

Molderings, Gerhard J et al. “Mast Cell Activation Disease: A Concise Practical Guide for Diagnostic Workup and Therapeutic Options.” Journal of Hematology & Oncology 4 (2011): 10. PMC. Web. 19 June 2017.

Anand P, et al Mast cells: an expanding pathophysiological role from allergy to other disorders. Naunyn Schmiedebergs Arch Pharmacol. 2012 Jul;385(7):657-70. doi: 10.1007/s00210-012-0757-8. Epub 2012 May 6.

Haenisch, Britta, Markus M Nöthen, and Gerhard J Molderings. “Systemic Mast Cell Activation Disease: The Role of Molecular Genetic Alterations in Pathogenesis, Heritability and Diagnostics.” Immunology 137.3 (2012): 197–205. PMC. Web. 19 June 2017.

  1. Saluja, R., M. Metz, and Marcus Maurer. “Role and Relevance of Mast Cells in Fungal Infections.” Frontiers in Immunology 3 (2012): 146. PMC. Web. 19 June 2017.
  2. Lee TD, et al Mast cell responses to helminth infection. Parasitol Today. 1986 Jul;2(7):186-91.
  3. Afrin LB, et al Mast Cell Activation Disease and Microbiotic Interactions. Clin Ther. 2015 May 1;37(5):941-53. doi: 10.1016/j.clinthera.2015.02.008. Epub 2015 Mar 12.
  4. Bent, S., Göttsch, C., Braam, U. et al. The effects of heavy metal ions (Cd2+, Hg2+, Pb2+, Bi3+) on histamine release from human adenoidal and cutaneous mast cells Agents and Actions (1992) 36(Suppl 2): C321. doi:10.1007/BF01997363


  • Reply

    Garylene Porter

    June 21, 2017

    Interesting theory. I suffer from IBS, IC, and have raging allergies to pollens and dust to name a few. Mast cell activation disorder makes sense. Now, what do we sufferers do about it?

    • Reply


      June 21, 2017

      Still just a theory, however, but your case underlines the connection. I’m working on a post with some possible treatment options, hoping to have it out by Monday morning.

  • Reply


    August 5, 2017

    I have IC, IBS, rhinitis, and seasonal allergies. My doc suggested I take a daily antihistamine to help with the IC, and have had amazing results! I also have bouts of massive bloating at times, after eating select foods….to the extent that I look pregnant and in pain. I do believe in your theory!
    Please continue research to help all of us with IC. Thank you!

    • Reply


      August 5, 2017

      Hi Lynne, thanks for sharing! It’s very interesting to hear this confirmed by real life stories rather than just reading about it in research papers!

  • Reply


    August 5, 2017

    This is very interesting to me because I have IC, IBS, and sometimes suffer from IC belly during a flare. I also have really bad seasonal allergies. But I have found the Claritin almost completely rids me of my IC symptoms. So I do feel there must be some sort of connection if Claritin is so reliable in providing relief.

    • Reply


      August 5, 2017

      Very interesting, thanks for sharing this! I hope it’ll help others find relief!

  • Reply

    Marianne lynch

    August 6, 2017

    This is the mist sensible thing I have read about IC so far. It is worth noting that people who have their bladders removed continue to have symptoms. Ic is mistaken as a bladder issue only as the symptoms are most noticable and painful most peopke with IC I have had food intolerances and IBS for years. The first thing recommended in IC management is to find out your food intolerances and therefore remove triggers. That is a clue to a mast cell issue. Keep this work up!

  • Reply

    Maria K

    September 27, 2017

    I am trying cyclosporine now. Have had severe IC, very painful, for 3 years and nothing has helped. I have loads of mast cells in my bladder biopsy but my uro cant tell me why. We are now exploring the auto immune aspect therefore the cyclosporine. I am so desperate for relief. Thanks for your blog. I hope and pray for a cure. This is one of the worst illnesses to have!

    • Reply


      September 27, 2017

      I feel for you, let us know if the cyclosporine works for you. Mast cells could be a sign of hidden infections or allergies – both something you could explore, I’ve written more posts about this that you could check out.

  • Reply


    March 9, 2018

    For years I have had horrible pain that feels like the worst bladder infection ever but if I have a urinalysis it’s negative for infection. I’m allergic to many medications and found most treatments make the symptoms worse. Recently I discovered Benadryl actually made the pain decrease or disappear. I have EDS and suspected of MCAS and found your article during my search for answers. Thank you for shedding light on this subject.

    • Reply


      March 10, 2018

      No problem. Urinalysis misses many infections, so it doesn’t always guarantee absence (in fact, mast cells could be present if there are hidden infections) – just something to bear in mind.

  • Reply


    May 24, 2018

    I have mast cell activation disorder. I was occasionally getting some mild burning in my bladder that would come and go. No bacteria found in my UA. One morning, I woke up at 4:30 AM with severe burning in my bladder. When I tried to urinate in my bathroom it really burned and I noticed that I was also have cramps and bleeding. I’m post menopausal so there was no reason for this. I took my H1 and H2 anti histamines right away along with Quercetin followed with water. A few hrs later I was near normal, with only slight burning. My cramps and bleeding only lasted 15 minutes. at the time I had to go to the bathroom. I believe this was a mast cell release that occurred in my bladder and also affected my uterus. I know what caused it, too. I had pasta sauce (tomato) with my dinner the night before and I believe it set off my mast cells and caused a release.

  • Reply

    Deborah Orpin

    May 26, 2018

    You may have access to my entire medical history…it will prove your theory beyond a shadow of a doubt. My doctors won’t listen to me and keep insisting that my IC is a separate disorder but I know my own body and I have mountains of medical tests that prove what I have been saying for years.

    Just last week I had been doing really well with my IC after starting physio and her working to release my pelvic floor which she feels is causing my bladder to be “strangled” and inflamed and not able to empty properly starting an infection, starting a mast cell activation episode starting I cannot even pee without heavy duty diuretics.

    Then last week I got bitten by about a thousand mosquitoes and I had a massive mast cell activation flare and the first one to join the party…my bladder went from being 100% fine, my diet and my life completely the same just got bitten by a thousand mosquitoes and bammm….IC cleared up right away with the heavy duty anti-histamines the chemist had to put me on to stop the MCA flare.

  • Reply


    June 23, 2018

    I had suffered with IC for 3-4 years and after numerous visits to the doctors for antibiotics and urine tests, I was referred to a urologist,
    That is the day that changed everything. The consultant had an interest in histamine intolerance and thought that my symptoms could be as a result of this. He sent me for tests and lo and behold my DAO levels were at an all time low; this is the enzyme that fights histamine naturally in the body. At present my histamine cup was running over and this can affect the smooth muscles in the body, of which the bladder is one,
    He set me on a course of antibiotics and a daily histamine and a list of foods that I should avoid but also those I should include in my diet. This was my salvation and I managed to reset my system and begin to function again, I have had a few slip ups, but the low histamine approach will always fix it and an antihistamine too!
    Thanks for your articles and it is nice to know we are not suffering in solitude.

  • Reply

    Laura Westwood

    September 30, 2018

    I have been reading all of these comments with relief for I too have been diagnosed and been suffering with IC for just over 2 years now.
    I have had a history of UTIs since a child and then after a severe food poisoning ( dysentery) episode I developed IBS in my 20’s. Although I tended to get a least 1/2 UTIs a year I found everything really ramped up 2 years ago when I became pre menopausal…having an attack at least 1 every 6 weeks and it did feel like my body was under attack! Dry mouth, bloated tummy terrible bladder and burning urethra with no infection ( most of the time) although always blood & pus shown in my urine. I then discovered I had adenomyosis and endeometreosis and have recently had a hysterectomy as I believe it will be easier to cope if I have at least 50% less of the pain. I do believe there may be a link to hormones as my IC flared more before my period and improved afterwards ( sensitive to low oestrogen?) I have now started hrt and am keeping fingers crossed everything will calm down. Please keep up the good work as I believe this disease is very much misunderstood by professionals and there is a long way to go to educating GPS and even urologists who don’t seem to get the links to antihistamine and/or other triggers for this debilitating condition.

  • Reply


    March 16, 2019

    Very interesting! I’ve had IC for probably 15 years, but now at 68 it’s worse than ever. Throw in IB, & rashes on legs, arms & one hand, I truly believe it’s histamine. Oddly though, I’ve never had any kind of allergies.

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