cell inflammation in IBS- D

[Eternity78]

Hi All ! while I was searching for any new treatments for IBS-D , I came across this diagram that shows possible causes of IBS-D in the left white side and their available treatments and drugs in the right yellow side ..most of the symptoms there are familiar to me but the last treatment stated as ( Mast cell stabilizer ) indicated for cell inflammation" is new to me ..has anyone heard of it ? or has used it before ??

[Hidden]

I haven't either but it may be a good idea to either liaise with your doctor, the NHS (that's if you are in the UK) or even Monash University that created the FODMAP diet.

Well done for finding this on the internet.

[Barnclown]

Hello eternity

Love your chart: THANKS!

Have been studying this subject all this year... have found lots of good legit published info relating to it...maybe these documents will interest you:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

diarrhoea isn't "so much" an issue for me...according to gastroenterology, my lifelong lower GI issues are hyper-reactivity to fruit & veg + IBSC-like slow transit dysmotility due to the cumulative effects of all my combined underlying immune dysfunction & connective tissue disorders. I feel very satisfied with this initial diagnosis...such a relief to have my suspicions confirmed! And now we'll all see what ongoing investigations with gastroenterology nutrition & dietetics clinic + immunology into any possible part a mast cell disorder may be playing

🍀🍀🍀🍀 coco

PS my main comorbidities are: infant onset SLE (systemic lupus)+ hEDS (hypermobile Ehlers Danlos Syndrome) + early onset SS (sjogrens syndrome) + Primary immunodeficiency (hypogammaglobulinaemia G, A & M) + small cell vasculitis

[Eternity78 in reply to Barnclown]

WOW !! Finally a silver lining hope actually suggesting that the Umbrella IBS term is a low grade inflammatory disease in mast cells induced by a mutation mostly genetic in the immune system function !! plus there is a name for it MCAD ( Mast Cell Activation Disease ) .

Differnt diagnosis , different medical term and of course different therapeutical pathways !! This is what i could understand from the highly complex medical terms used in those studies in the links ( i used google translate to help as English is my second language 😳 ) Now ..the problem is how can we convince even the highly educated GI consultants to believe in the results and new findings of these research studies ?? may be they will describe us as delusional speaking out of despair 😩😓 and that these studies are just still in the trial phase ..whatever excuse they give us to dismiss the new findings , personally i think that the term IBS and the "dysfunctional cause " concept is RUBBISH that i can not digest it mentally ..it is more convincing when i read that IBS is kind of an inflammatory Disease in a specific complicated pathology ( a genetic mutation in the immune system causing this change or Activation in the mast cells )

Thank you so much for both links and although the medical terms and language are difficult but it was for sure a useful resource that shed a light of hope at least for the future generations .

[Barnclown in reply to Eternity78]

You're v welcome!

And: Exactly! 👍🏻👍🏻👍🏻👍🏻

I've spent a lifetime avoiding gastroenterologists as much as poss for all those reasons you've explained so well...lifestyle management of my mouth to a*s inflammatory reactivity & slow transit dysmotility has been tough going, and i've had to survive very rough phases when i've had to submit to gastroenterology & colorectal surgeons. But this has taught me a lot about their deficiences/prejudices and my abilities to cope. During the past 12 months, i've had to turn to gastroenterolpgy & colorectal medicine again....and the way i'm getting what i REALLY need from the IS by proving, in terms they can understand, that my gastro manifestations ARE inflammatory...this has taken A LOT of effort on my part...but it's paying off. I wish the same for you🤞🏻

My husband & his sister have early onset Crohns Disease...they've endured several major bowel resections each and spent lifetimes on steroids. She has an ileostomy. Their gastro ordeals have helped me keep mine in perspective 😉 while i've knuckled down for decades of surviving my version of gastro ordeal

I too hope i live to see establishment health systems instigate a more enlightened & humane approach to these problems 🍀

[Eternity78 in reply to Barnclown]

I'm truley sorry to hear about your struggle either with your diseases or with the doctors to let them understand what your body is screaming for 😥

may i ask what Meds are you taking now ??

have you had any surgeries ? and in which country you have received the "it" treatment you were asking for ? if you don't mind please ..or if you prefere to DM for your privacy feel free to do so 🤗🌹

[Barnclown in reply to Eternity78]

Hello again

Am in the UK under NHS care for all my comorbidities

I think you're asking about the 5 part treatment plan that's currently helping with this persistent 22 month worsening of my chronic lower GI issues:

1. Diet: Low fibre, low fermentable foods (no fruit & veg except peeled potatoes, white rice, white flour + the occasional piece of dried fig/date/raisin/walnut/almond/brazil)

2. Methylcellulose (Celevac) tabs: daily before breakfast 2x a.m. & before supper 2x p.m. With plenty of water. This is an insoluble nonfermentable bulking agent

3. Ortis cube: daily 1/2 cube before sleeping p.m. This acts as a simulant

4. Immunology clinic's daily antibiotics : coamoxiclav 625mg 1x a.m. + 1x p.m. prescribed for hypogammaglobulinaemia PID as prophylactic antibiotic, and has damped down chronic persistent pockets of bacteria driven multisystem infections including gastritis due to slow transit small bowel bacteria overflow

5. Rheumatology's daily therapeutic dose of oral combined therapy lupus meds: these include daily 5mg prednisolone which has proven to help stabilise my lower GI issues by damping down inflammatory process (my other daily lupus meds are: hydroxychloroquine sulphate + mycophenolate cellcept + amitriptyline)

Now my medics are looking into whether i'm affected by a Mast Cell Disorder

My only GI surgery was a full-on emergency haemorrhoidectomy on early onset strangulated prolapsing piles when i was 30. These severe early onset piles developed in my teens due to hypermobile ehlers danlos syndrome (hEDS)

I hope something in there can be useful to you..i've been ultra conscientious about self help/lifestyle management including complimentary therapies, exercise, diet etc all my life...my medics say this is standing me in good stead generally

🍀😘

[Eternity78 in reply to Barnclown]

Thank you so much for the detailed information , i'm really speechless and shocked how any human body tolerate this loaded amount of drugs !!

Then again must cope with the side effects if there are any ..I Greatly appreciate your patience, insistence and strength to face all of these disorders/ diseases you've mentioned ..i will check them out in more details and try to convince our local doctors to look closer at my condition from another perspective.

I once talked this way to one of my doctors and he said " I will prescribe you an antidepressant !!

Thanks again ..hope you stay in good health and take care 💕💐

[Barnclown in reply to Eternity78]

Well, my mother didn't let me know i'd been diagnosed with infant onset lupus. I grew up just thinking i was "sickly".

When i moved to the uk @ 21 yrs old, the nhs took me on as unaware of my immune dysfunction as i was. The health system helped me surive emergencies& diagnosed my secondary conditions for 40 years while i conscientiously practiced lifestyle management/self help with complimentary therapies & avoided pharmaeuticals as much as poss

Meanwhile over 40 years progressive multisystem debilitation & disabilty got worse & worse

Finally a brilliant rheumy figured my lupus out 6 years ago & my mother confessed about the infancy diagnosis.

So i've just had 6 of the healthiest years of my life thanks to my heavy duty lupus meds: have been feeling less pain & more stamina + resilience than i've had since my teens.

Go figure!

So far am experiencingno side effects at all...and am so glad to feel more alive again...

Am wishing you every success in your search for convincing diagnosis: you'll get there! Don't let the b*****s get you down...as you know, there really ARE good medics out there too

😘🍀😘🍀