Crohn's disease / Ulcerative colitis / Mastocytic enterocolitis

[Thinktank]

Just wondering if there's anyone else on here with some type of inflammatory bowel disease and having any luck getting into remission?

I've personally been diagnosed with Crohn's but i don't agree with the diagnosis because the inflammatory markers and inflammatory lesions are way too unspecific for Crohn's.
There's a much deeper etiology to my IBD which i'm trying to find out.

Looking forward to hear your experiences.

 

[aimossy]

did you have your calprotectin level in stool checked and or scopes or wireless pill camera endoscopy? im tryin to get to bottom of my very bad guts. good to know what inflammatory markers are up and how high.ANA WBC ESR.

 

[Thinktank]

Yes i did genova's CDSA 2.0 test
Calprotectin was within normal range but eosinophil protein X was extremely elevated.
I've also had two gastroscopies with biopsies, two endoscopies with biopsies and a pillcam study. All inflammation and ulceration in the small intestine, colon and stomach is non-specific.

ANA negative, ESR < 5 = low, hs-CRP < 0.1 = low.

I really don't think i have Crohn's whatever the gastroenterologist says. I've used Crohn's meds and recently high dose prednisone which haven't helped.
I'm to see dr. Meirleir soon, hopefully he has a better explenation than "Crohn's".

 

[aimossy]

trust your instincts!!! you obviously know your stuff
I have heard from gastro that calprotectin level needs to be over 150 for chrons often up into 500s but I don't know definites. I guess there could be mild forms of IBD
I spose your off all milk and wheat or checked for foods that are irritants by now.i don't know about the genova CDSA 2.0 test.
I wouldn't want to be on prednisone either if it doesn't help
I want to have a wireless pill cam done to rule chrons out
eosinophils raised/wbc
ana raised esr raised calprotectin 95 not checked since last year
im not sure what to think they are all up but not screaming ya know.

hope dr meirleir can help let us know how it goes? id be real interested.

 

[Thinktank]

Yeah i did a lot of testing and my calprotectin was 15 by the way.... I also tested for IgE and IgG food allergies & intolerances. I seem to be highly intolerant and allergic to many different foods but i believe even IgE-negative foods cause a reaction from the mast cells releasing all sorts of inflammatory mediators.
I also have a hyperpermeable intestinal lining aka leaky gut so all those proteins, bacteria and toxins leak through the lining causing my immune system to go haywire, contributing to more intolerances and allergies, it's a vicious cycle.

A pillcam study is definately something you should do. My pillcam study revealed a lot but yet again, non-specific.
Next step for me is a double balloon endoscopy with biopsies from the small intestine.... Also have the GI effects profile and celiac profile lining up next week. I'm pretty sure i also have celiac disease with some pathogenic critters eating away on my intestines and releasing all sorts of neurotoxins.

Have you ever had an endoscopy with biopsy? Pref. from the colon AND ileum (first part of the small intestine). The pathology of it usually tells a lot.

How's your weight doing? Are you losing it or are you stable?

I'll keep this thread updated with my findings and dr. Meirleir's comments.

 

[aimossy]

I only had a gastroscopy over 5 yrs ago and a biopsy for celiacs.am a hell of a lot worse in the gut now than then.worked really hard to get off omeprazole.really want to have the pill camera,ive lost over 10 kg. gut drives me up the wall wakes me at night thru sleeping meds. came off wheat year and a half ago.if I don't have milk products bloating gets less and wind but pain and weird stuckness in upper middle gut worse.feel damaged in there now.hard to breathe its like its all pulling on my heart and lungs.uuurgh.
some probiotics made me worse recently.wrong sort for me im figuring.
im off to gastro soon
is there anything you have found that helps for you,
simethicone for me and lactulose syrup has been only thing saving me from pain over last couple weeks fibre is a tough one for me.
vitamin b supps have caused more high middle gut pain for me and worsening of symptoms elsewhere same sort of thing with vit b supps.
thanks for great info/ fingers crossed for you. hope someone with more experience posts for you.

 

[Thinktank]

Things that have helped me:

- DGL tabs 20 minutes before each meal, extremely soothing on the intestinal lining. I can eat what i want if i take that stuff and the good thing is it doesn't block stomach acid which you NEED for digestion. Unfortunately, i believe i have become allergic to DGL / licorice now... that damn vicious cycle. Luckily i feel PepzinGI + zinc glycinate / copper combo is healing my stomach ulcers so no more need for the DGL.
- VSL 3, helped the first time, stools became formed and i felt a lot better so i stopped using it. The second time using VSL 3 it increased my anxiety and panic attacks, my immune system is now reacting to it or some strains are converting histidine into histamine.
- PepzinGI, (zinc-carnosine) just started this a week ago and i notice it's helping with my gastritis / stomach ulcers.
- Creon
- Going off gluten and all grains, i'm now also off all dairy.
- Avoiding high histamine foods or foods that trigger mast cell degranulation.
- Avoiding foods high in undigestible fiber.

- Things that made everything worse:
- CONVENTIONAL MEDICINE - PPI blockers, antibiotics, steroids like prednisone etc.

You need to get off the PPI and try something to soothe / heal the ulcers. I'd say start with DGL / PepzinGI / L-glutamine and create a diet. If something bothers your stomach, don't eat it for a while and introduce it back later.

High dose B vits also bother me. I get diahhrea/spams and a feeling of over-stimulation followed by a heavy crash. Maybe it has something to do with methylation or my liver, hopefully the 23andme and Yasko's DNA tests will show if i have some genetic mutations that cause this reaction.
I've ordered a low-dose B-complex without nasty fillers, maybe i'll do better on that one.

Things that work for me might make you worse.

 

[aimossy]

thanks thinktank, great to see what you have tried and experienced
what are DGL tabs and pepsin GI? how does l glutamine affect you?
I get worse on ppi and ranitidine and don't like how they make me feel. react to antibiotics now. have you tried activated charcoal im thinking about it.because of reacting to things I thought I might try a bit of nilstat as a bit of a sibo starter and keep working on diet.
I have found that if I try anything I have to go slow and gentle with it.
managed to get off ppi after vit d bombing from doc.and if I keep trying to put gut thru it I think its kept reflux at bay.
i have bifantis probiotic sitting there and i think ooooh i dunno.haha
the gut is bloody complicated
hope the tests show stuff for you and finger crossed for your low dose b.
its unreal how we are all so similar but react different.

 

[Thinktank]

DGL = the de-glyzerrizinated form of licorice. You should only use this version and not plain licorice.
You must have chewable tabs so it mixes with your saliva and creates a soothing mixture.
PepzinGI = Zinc-l-carnosine, it can heal stomach / intestinal ulcers in some. It's especially used a lot in Japan.
L-Glutamine, not sure about the effect so i've ordered a few different brands to try out. One thing i worry about is the conversion of l-glutamine to l-glutamate, a neurotoxin if it's level is too high. L-glutamate already showed high in my Genova Nutreval panel.

Check out iherb.com for reviews and lef.org for more detailed information about the supplements mentioned above.

Yeah you NEED stomach acid for digestion and as a barrier for pathogens. PPI's and H2 inhibitors only make intestinal problems worse on the long run. It's just a bandaid that will not cure you. I hope you can find a way to get off it soon.

Yes i've tried activated charcoal for 1 day, my poo got all black so i discontinued the use of it but i was thinking about trying again because of my cognitive problems, maybe it can soak up some toxins. I know of a few gastroenterologists who use it as a part of their treatment. It seems also to inhibit TNF-a which is usually elevated in Crohn's. The conventional biological medications lower TNF as well.

 

[aimossy]

thanks soooo much I will check it all out.
I worried about the L glutamine for that reason
they must take out the element in the licorice that elevates cortisol and blood pressure for that supplement.
havnt used ppi or h2 for almost two years but at a point where have to find something else cos I don't want to go back on them will by some charcoal tabs I think but might see if I can get some thru amazon.
great info for me to use thanks again
hope your visit to doc m is soon.

 

[parabola]

I know this is an old thread but hopefully this could help someone. I was diagnosed with crohn's, I think they were uncertain with my histology too, but the defining feature was 'cryptitis' which is very indicative of crohn's. I seem to have a 'smouldering' version (for which I'm grateful mostly) in that my CRP never gets very high, but that also meant it evaded discovery for a long time.

Given your multiple allergies I would strongly recommend trying an elemental diet (Elemental E028 formula, NOT Modulen as it contains whole protein in the form of casein). It made me feel really well, plus it gives an excellent baseline for reintroducing foods one at a time, such a great starting point, leaving no doubts over whether it could have been something else you ate.

 

[Seven7]

I have colitis.
I do the canasa suppositories, I am trying BPC-157 see if it helps.

 

[snowathlete]

Yes i did genova's CDSA 2.0 test
Calprotectin was within normal range but eosinophil protein X was extremely elevated.
I've also had two gastroscopies with biopsies, two endoscopies with biopsies and a pillcam study. All inflammation and ulceration in the small intestine, colon and stomach is non-specific.

ANA negative, ESR < 5 = low, hs-CRP < 0.1 = low.

I really don't think i have Crohn's whatever the gastroenterologist says. I've used Crohn's meds and recently high dose prednisone which haven't helped.
I'm to see dr. Meirleir soon, hopefully he has a better explenation than "Crohn's".

Just to say that I was disappointed with De Meirleir's response to my developing ulcerative colitis while on his treatment protocol, so I would not recommend seeing him for IBD. He should have brought a stop to my treatment (antibiotics) which as it turns out was the cause of the UC and which there was even a case study paper reporting the same from the same specific abx as I found out myself. Instead he didn't show much concern and as I continued the treatment it got worse. In the end I saw a gastro, had a colonoscopy and started treatment for UC. But I continued to decline and it was only when I stopped De Meirleir's treatment that I improved - rapidly - though I have not made a full recovery. Prednisolone did not work for me either, it did nothing. Mesalazine helps, it keep a lid on my inflammation but I am permanently on the maximum dose and reducing the dose or forgetting a dose makes all my symptoms, including ME much worse. My calprotectin tests are always normal even when I am passing blood and in a bad flare. Doesn't work for everyone.

My UC flares if I eat emulsifiers or preservatives, so I avoid them entirely along with other additives as much as possible. When flaring my gut is also sensitive to gluten, and loads of other things, so I find things that my gut can tolerate better when flaring. Basically, do an elimination diet patiently, but I would suggest finding a good gastroenterologist rather than an ME doc.

edit: just realised this thread is quite old, but maybe this info will be useful to someone at some time.

 

[kangaSue]

Something that gets overlooked by all the specialists in the way of an inflammatory bowel condition is Chronic Mesenteric Ischemia (bowel ischemia).
I have the Non-occlusive Mesenteric Ischemia variant of it but it's a diagnosis that doesn't get a foot in the door because the majority of G.I.'s only know bowel ischemia as the acute type which has often progressed to bowel necrosis so has inflammatory marker pathology with it.
When it's chronic, there is generally just enough blood flow getting to the bowel so there is no blood pathology findings to guide a diagnosis despite it being widely reported to occur in a wide variety of conditions where chronic GI dysfunction is a symptom.

 

[Thinktank]

@kangaSue , are you having treatment for that condition? Or did you have surgery?

 

[kangaSue]

@kangaSue , are you having treatment for that condition? Or did you have surgery?

There are some causes of Chronic Mesentery Ischemia that have a surgical fix. Mine being non-occlusive (which accounts for about 30% of CMI cases), the only option is peripheral artery vasodilators. I use a couple of nitrate meds, nicorandil and Nitro-Dur patches but I've come across reference for using cilostazol or dipyridamole which I also found helped but I couldn't tolerate it like I do the nitrates.

Anything that causes vasodilation can help, supplements like arginine, citrulline, N-acetylcysteine or as a surgeon advised me once, you could try Viagra.

The doctors weren't keen on me using vasodilators because I also have low blood pressure but as it turns out, I had a paradoxical response in getting a raise in b.p. which indicates that autonomic dysfunction is part and parcel of the whole situation and which I'm still trying to get to the bottom of.

 

[mikefromvancouver]

I have crohns disease and was in remission a year ago, I was on LDN and supplements. But now its active again..

Anyways, I feel your pain, this is an awful condition. I have the variety of Crohns that gives 24/7 fatigue.

 

[kangaSue]

@Thinktank, In regards to finding some benefits using dipyridamole, I came across the subject of purinergic signalling and the experimental use of dipyridamole in IBD.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340257/ (especially point 3.3b)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3675791/

IBD is associated with excessive inflammation of the bowel, and purinergic signaling has been implicated in IBD. Intestinal inflammation is associated with a severe shift in metabolic supply and demand for oxygen, resulting in profound hypoxia of the inflamed mucosa. This was pretty much what was seen in me during a colonoscopy to conclude I had bowel ischemia from NOMI.

 

[parabola]

I have crohns disease and was in remission a year ago, I was on LDN and supplements. But now its active again..

Anyways, I feel your pain, this is an awful condition. I have the variety of Crohns that gives 24/7 fatigue.

Did you stop taking LDN or did it stop working for you? How long did you take it?