Do you also have sinus issues (polyps), year long allergies, asthma? Joint pain? Does your cuff always burn? Do probiotics make your pouch worse? Does your pouch “health” fluctuate with your menstrual cycle? Have you tried every diet but still can’t get your pouchitis to go away? Perhaps paleo type diets make you worse? Do you have lots of food intolerances? Low carb seems to make you better? Do abx make “it” go away only to return? Is prednisone like a miracle drug? Are you “allergic” to aspirin (salicylates) or maybe have been diagnosed with AERD? Pvc’s? Tinnitus? Insomnia? Does taking glutamine for your leaky gut make you worse? Do high altitudes and chlorine make you worse? Does your CBC always reflect high wbc’s, eosinophils and IgE?
If you answered yes to many of those, you might be dealing with MCAS or histamine intolerance (or both) and this might offer you some insight and hopefully, some pouchitis relief. I won’t go into the details of mast cells, the different M1 M2 M3 and M4 receptors and histamine intolerance but know that mast cells release histamine and are predominant in “hollow” organs: sinus, lungs, gi tract as well as joints (and many other places). Also know that few doctors know anything about this (yet!).
My colitis came on suddenly ten years ago after taking just ONE antibiotic pill (septra=sulfamethoxazole and trimethoprim). It was like a switch was turned on. Ten years prior to that, I developed debilitating nasal type allergies. It turned on like a switch too. My colitis was swift and severe and resulted in what most of us have, a j pouch. Right after take down, I had chronic pouchitis and cuffitis. When I had my temp ostomy, I had way less “allergies” which I always thought was curious but every doctor shrugged it off (been to over 56 of them in 18 years).
For the last eight years, I’ve been trying to “kill the it.” I’ve posted here on a few times of my “go to” kill regimes for my pouch. I was convinced my gut and immune system was reacting to a specific “thing/pathogen/infection.” I have had positive tests for Babesia and MAP. Antibiotics, especially metronidazole, help immensely so I always thought they were killing “the thing.” I have been chasing herbs and antibiotics as they offered “some” relief to my pouch inflammation but upon stopping, the inflammation ALWAYS quickly returns
Like you, I have tried SOOOOO many diets, paleo, AIP, FODMAPS, GAPS, you name it, I’ve probably tried it with little success in symptom reduction. Fasting helps. Of course paleo type diets made me worse; they are loaded with fermented, high histamine, high oxalate foods and meat. Low carb helps me as it helps many of you. I think it does reduce the bacteria in our guts, and thus, reduces histamine.
Gut dysbiosis and the bacteria involved in it are huge players to histamine production, the over-production of it and our body's non-efficient processing of it (SNPs). Taking probiotics or prebiotics always made me way worse. Since many probo strains increase histamine and prebiotics increase gut bacteria, it's all makes sense now.
It wasn’t until I started having very high histamine again this year that I was like WTF is going on. I had been diagnosed with AERD, sinus polyps (no smell or taste for 18 years and three surgeries; they always grow back), asthma, salicylate intolerance, etc. I knew histamine was always involved but to what degree, I wasn’t sure. No doc ever put the pieces together in the 13 minute office visits we had; they just wanted to put me on the latest and greatest MAB. This makes sense if you look at how MABS work and they pathways they “target.” MABS are an elegant solution to many “over-reactive” immune type things; just watch the nightly news and you will see how Humira works for a gazillion different things. I did not want to be a life-long patient of pharma and the side effects I experienced from Remicade always stopped me from going this down this route again. I’m not dissing MABS! If they give you relief, you actually have insurance allowing you to afford them and have no side effects...AWESOME. I have Dupixent (dupilumab) on the back burner as it specifically helps the TH2 type inflammation I deal with.
I dug into MCAS and the research. I learned that almost every SIBO herb I was taking that I thought was helping (and they were to some degree) was high in salicylates. Doh! This goes for many "healthy" foods too. Gah!
Because I use budesonide in my sinuses, and lungs, I thought what about my pouch? Instead of using metronidazole topically in my pouch which helps immensely, I crushed my Entocort (budesonide) pellets and rinsed/held those in my pouch over night; such RELIEF! Ok, now I'm getting somewhere! Topical budesonide helps every “hollow” organ I own (stabilizes mast cells). Ah ha! I should also mention when I take prednisone I am a completely normal human being in that I can eat anything, poop normally and feel amazing. Corticosteroids inhibit mast cells. Taking prednisone put me in “remission” after my first major flare but we all know what they do long term at high doses plus they mask the root cause.
I realize of course, infections like MAP can cause an immune dysregulation and destabilise the gut wall and it IS involved but no one really knows exactly the how or why yet. Also, that somehow the luminal bacteria in our ileums (pouches) are very involved in this bacterial histamine production. Did the septra that “started this” kill off some indigenous bacteria keeping the histamine in check? I don’t know but I believe that metronidazole, my miracle drug, simply reduces MY OWN bacteria and thus reduces histamine production. As soon as I go off of it and my microbiome “re-grows” the histamine ramps up again. For most people, this is normal, for us with our switches turned on, this turns into our chronic agony.
After learning all this, I immediately went on a strict low histamine diet and added a few support supplements to help stabilize mast cells. There are many mast stabilizing supplements; learn your genetic SNPS to research which of them might work best. Don’t just start taking X, if you do have MCAS as adding loads of supplements could actually make you worse. I also added DAO before each meal. I continue to take my daily otc antihistamine and use budesonide in all things hollow (sinuses, lungs, pouch).
I am SO MUCH BETTER. I can sorta smell and taste again after so many years and my poop is finally firming up and not burning. The elimination diet is strict (BORING) but who cares! The hope is after 3-6 months you can expand your food selections.
DAO. Those with dysbiosis, leaky gut, crohns, colitis, etc. are almost always lacking in DAO (magnesium deficiency and many other things contribute to this too). Supplementing DAO has helped me; others have posted about DAO on here too. It’s important to note, you can’t just take DAO and still eat a high histamine diet. It won’t work. Histamine overload is like a bucket, you have to keep that bucket empty there is no way to cheat with just taking a pill. If you are interested in trying DAO, get it from Diem. They are the only ones that manufacture it in the USA so go to the source to be assured quality: umbrelluxdao dot com
I recently also started taking Peptide BPC-157 orally. It has definitely helped my gut. I’ll make a post about it. It’s synthetic. If you do want to try this, see a functional doc and get a script. There are many amazon type suppliers and there is crazy hype around it about being a “miracle” type elixir. Don’t believe it. If you want to try it, get it compounded as it must be kept cold. It’s not a long term use thing. There are a few studies on it for crohns and colitis. Not a magic bullet but it has significantly reduced my bloating and seems to be helping with zero side effects.
I continue to work on calming my limbic system as this is also a key component. A huge factor that must be addressed in auto immunity is a maladaptive stress response. This can go deep, to childhood; WHY we over react to everything and the nervous system and brain must be addressed too. Mast cells are there to protect us and if your limbic system is out of whack, you (they) are over-reacting to everything. You’ve GOT to calm it. DNRS, EFT, meditation, whatever works for you to change your brain, do it. It’s a huge piece of the puzzle. I have also mitigated blue light from technology and wifi and emf’s. These all do weird immune things too. Too deep to discuss in this post. I also got my D levels up from the SUN (important!) and as mentioned, eat that super fun (not) low histamine organic diet.
It has taken me almost two decades to put the pieces together. My hope is that as I continue to reduce histamine in my body, my gut can finally heal and the inflammation will go away. I’m not sure if the chicken of the egg came first here or if I can get those levels low enough to truly heal but I think I finally have found some relief and answers.
I truly hope this might help you too. Don't give up! Keep researching, keep seeking answers. There is always something new to try.
A great resource is mastcell360 dot com. Amazing info and advice and you can learn a ton more.