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Crohn's disease / Ulcerative colitis / Mastocytic enterocolitis

Discussion in 'Gastrointestinal and Urinary' started by Thinktank, Sep 4, 2013.

  1. Thinktank

    Thinktank Senior Member

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    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.
     
  2. aimossy

    aimossy Senior Member

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    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.
     
  3. Thinktank

    Thinktank Senior Member

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    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".
     
  4. aimossy

    aimossy Senior Member

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    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.:)
     
  5. Thinktank

    Thinktank Senior Member

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    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.
     
  6. aimossy

    aimossy Senior Member

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    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.
     
  7. Thinktank

    Thinktank Senior Member

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    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.
     
  8. aimossy

    aimossy Senior Member

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    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.:)
     
  9. Thinktank

    Thinktank Senior Member

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    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.
     
  10. aimossy

    aimossy Senior Member

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    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.:hug:
     

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