I was diagnosed nearly 5 years ago. I have had diahorrea for 2 1/2yrs so lost 13kgs. I have been to Gastrologist, had 2 colonoscopies, diagnosed with colitis, on gluten free diet, tried strict fodmap diet, been on Budesonide (steroids) almost continuously for 2 yrs and still having trouble. Recently it has worsened with cramping, pain and feeling very unwell in gut even though I take good quality pre and pro biotics.
A poor gut affects Parkinson’s symptoms & I really don’t know what else to do. Any thoughts/suggestions would be greatly appreciated .
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Psalmody
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Have you tried the Specific Carbohydrate Diet? That is what I try to follow. There are very small studies showing it can normalize the microbiome: healthunlocked.com/cure-par...
Sorry to hear about your digestive issues - have you tried some fermented products like kimchi, sauerkraut, kefir, etc.? Have you been tested for SIBO? I agree with ccraspberry that consulting a functional medicine doctor would be a good idea, but if this option is not possible I recommend the book "Fix Your Gut" by John Brisson. I've been using it personally for the past few years and find it very helpful, although was very disappointed that there is no subject index and even worse - the table of contents doesn't even provide page numbers which I had to fill in myself. May be now there is a better edition.
Wishing you all the best and keep us posted, there are many knowledgeable forum members who may provide good advice.
Two common ones that have shown benefit in inflammatory diseases of the gut are Low Dose Naltrexone (LDN) and melatonin. Both have very good safety profiles. Melatonin studies in humans involve ulcerative colitis (UC), which is generally considered worse than colitis, and in animals involve colitis. LDN studies involve humans with Crohn's or Irritable Bowel Disease (IBD). Here is a link to a melatonin / UC study in humans using only 3 mg/day of melatonin :
>>> ' Colitis induction in untreated rats caused necrotic effects in colon tissues, a significant increase in colonic IL-1β, TNF-α, MPO, and MDA levels, and a remarkable decrease in GSH and TAC levels in colon tissue in comparison to the control group. Meanwhile, melatonin treatment reversed these parameters by improving the microscopic and macroscopic colitis features and extra-intestinal (kidney, liver, and spleen) changes in all treated rats compared to the colitis control group. These results denote a reduction in colitis severity due to the anti-inflammatory and anti-oxidative effects of melatonin and its positive impact on the vital organs. ' <<<
It should be noted that in the above animal study, a human equivalency dose would be approximately .81 mg /kg /bw.
This next study involves the use of LDN in the treatment of IBD :
>>> ' Naltrexone directly improves epithelial barrier function by improving wound healing and reducing mucosal ER stress levels. Low dose Naltrexone treatment is effective and safe, and could be considered for the treatment of therapy refractory IBD patients. ' <<<
Your gastroenterologist should be familiar with LDN and its very good safety profile, but may not be familiar with melatonin for this use. In the human study, the dose was extremely low and is generally mainly considered useful as a sleep aid at that dose. The animal study was a significantly higher dose and had fairly impressive results.
I think LDN is most noted and tested for helping patients with Crohn's disease or IBD. It is generally not a fast treatment in such cases, but it seems to be effective based on studies and anecdotal evidence, over time.
What is your diet like ? Do you eat dairy? Meat? Could the prebiotics be affecting it as don’t they ferment? Do you eat any processed food? Fruit juices or dried fruits with fructose? Olive oil?
Hi diet is gluten free, diary free and I dont eat much red meat at all. I dont eat processed for, juice of dried fruits. Occasional Olive Oil. My diet is pretty boring really as I try to eat carefully.
Maybe try cutting out prebiotic for a while just in case it is feeding the wrong bugs?
I think olive oil is a good thing usually at least, not sure about for ibs. Could you try more red meat in case your b12, iron is low? It is very nutrient dense if you can tolerate it especially liver. What about bone broth home made? That often seems to be suggested to soothe gut.
I assume you avoid beans and lentils and chickpeas as part of the fodmaps diet? And lectins?
Have you looked at oxalates and salicylates in food and if you are getting too much of either of these?
Otherwise berberine is probably a good thing to try in case of an infection. Thorne is a good brand.
My friend had this and was sensitive to dairy but after going gluten free her dairy allergy and symptoms cleared up. Are you sure you aren’t eating something with gluten that you aren’t aware of? Even oats I think have a type of gluten like protein so they may affect some people.
I had to look up oral Budesonide as I only knew it only in inhalation form for asthma. I see the oral med is used for Crohn's, IBS and diarrhea. I was reading side effects and note it can cause abdominal pain. The inhaled form can cause diarrhea. I'm not a medical professional, but have you tried other meds for your stomach issues? Or gotten a second opinion from another GI doctor? My husband has numerous medical issues and seeking out 2nd and sometimes 3rd opinions, followed by medication changes has made a profound difference in his symptoms and how he feels.
So, this is really a longshot, but I had a friend with the same problem (was diagnosed with this and that, buncha doctors, colonoscopies, different meds) but after a lot of misery it turned out the culprit was that every morning for years she'd been taking a spoonful of some "all natural health tonic" that contained aloe.
She'd started on the advice of a clerk in a health food store...and never linked the two things together, but it turns out diarrhea can be a wicked side effect. (And of course, since she'd been doing it since forever and aloe seemed so natural she never brought it up)
Not that that you're even necessarily ingesting aloe somehow (could you be?) but some other silly little component of something seemingly innocuous you eat/take regularly? Even a tea! Get on Google and look EVERYTHING up!
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