4 ms·

I didn't expect this level of attention at all. I hope it is appropriate for me to respond. - what positive effects did you get taking S. Boulardii ? Intestin

I didn't expect this level of attention at all. I hope it is appropriate for me to respond. - what positive effects did you get taking S. Boulardii ? Intestinal "well-being," feeling I can almost forget about my intestines, whereas normally my abdomen always hurts very badly, to the point my entire body is straining in reaction to it. This is only in combination with the other measures I took; S. Boulardii alone is insufficient. Whenever my intestines felt fine, my head felt clear and my nose/sinuses would stop being congested; and vice versa. This phenomenon has been consistent throughout my illness and has led many a doctor to scratch his/her head and/or not take me seriously. I tried doubling the dose after reading about that on the net (some people take 25m+ CFUs), but it gave me dryness/constipation and resulted in diverticulitis so I gave that up. - did you try reuteri ? If no why ? If yes what happened ? Only as part of larger probiotic formulations. I don't tolerate most and I'm not sure why. It may be that some strains produce histamines or include FOS (when I iterated through probiotic products, I was not aware of FOS - please see my other reply below where I discuss FOS). So I don't have any experience with it. - what forms did you take the supplement in ? What form do you prefer and why ? Any brand recommanded or things to watch out ? Do you know natural reliable food sources ? I take KAL S. Boulardii (ordered from iherb). I use veg. capsules because of a bias I have: I had bad side effects to a few liquid probiotic formulations I tried early on, so I ended up avoiding them as a general rule (which might be invalid but I have no further need to re-test it). - can you tell me more about your 3 courses of H. Pylori eradictation ? Why ? How ? What are the results and costs ? The reason I got the treatment in the first place was chronic inflammation in the stomach and intestines. I also had severe chronic sinus inflammation (enlarged turbinates specifically) that never abated, and a very bad response to histamines (redness, itching). I had asthma-like throat constriction; a doctor once told me "of course your heart rate's up, you're almost choking!" after I went in because I felt out of breath. I had a general drunken feeling, and would even get giddy at times. I have considered the possibility of auto-brewery syndrome, but there's no way to tell now. The doctor was a gastroenterologist so he focused on the digestive issues. After the eradication therapy, that all got much worse and I developed noticeable food intolerances. I think I was already sensitive to those foods, but not enough that I'd notice at the time. I specifically could no longer tolerate dairy and sugar at all, and I had to greatly limit harsh foods (acidic stuff like vinegar, or very salty foods) or else I'd get gastritis extremely quickly (confirmed on endoscopy). My scalp started to itch and lots of hair fell out in my crown area. I am better with dairy nowadays but still can't have sugar, and vinegar just destroys me (I guess because it is corrosive AND high in histamines). I also can barely eat acidic foods and have to avoid most of them. - did you notice what in your life may cause you to loose a proper gut content ? I had always felt great until the age of 11, then it hit me and I started to have "attacks" which I didn't understand at the time, and doctors couldn't figure them out at all. I was given a bunch of things like nasal steroids for the sinus issues, and some symptomatic treatment for the stomach. I felt so terrible though, literally like I was dying. I imagine waterboarding feels like that, because I just felt like I was unable to breathe adequately and even though it wasn't visible, I felt like I was making a contorted face all the time because of the feeling of straining. I kept asking for help but after doctors couldn't find anything, my parents began punishing me for what they thought was malingering (long story there - but they are forgiven and we are on good terms now). I have some theories about what caused it but nothing concrete. I moved country (continent too, in fact) just 2 years prior and hygiene was far worse. I went through several bouts of gastroenteritis. I also got a salmonella immunization (capsule) and the doctor instructed my mom to open it up and release the powder in some milk, to make it easier for a child of my age to swallow it. I got extremely sick with some kind flu-like illness + gastroenteritis after that, even though my siblings who took the same immunization did not get sick. Please see the reply I made below for some more details if you're interested edit: I forgot to mention something relevant that would relate my experience with the article. A while back I read an article written by an autistic man, in which he mentioned "face tightness" being part of his being autistic (I only made the connection later so I don't know how to find it again). I truly think there is something to that. I felt strained and neurotic whenever my symptoms flared up, and I was quite antisocial in high school, yet mellow on the few days my symptoms cleared up. edit: further details added. I typed this up a bit quickly (it's late here) so I had omitted some important things.

code_duck 8y ago
A lot of your symptoms sound similar to some things that I have been through. I found out that I have celiac disease, after suffering through a lot of physical symptoms which were sometimes paired with mental symptoms such as confusion or mood swings, which are common with celiac. The exact cost seems to be a mixture of things… release of neurotransmitters and immune system chemicals, disrupted gut flora, chronic pain and discomfort, and malnutrition from poor absorption. Like yours, it’s a long story.
- theprotocol 8y ago
  I don't have any statistics, but judging from the number of sites and blogs that have popped up that deal with similar conditions, this seems to be an increasingly common problem. It seems like you could now speak about brain fog and everyone would understand what you meant, and I don't think that was the case 15 years ago. I've only ever made 2 top-level comments related to this issue on HN and they have surprised me with the amount of attention they generated. A lot of people are going through desperate times because of conditions like this. It's hard to appreciate how bad it can be just by trying to imagine the symptoms for an instant. It's much harder to imagine what it feels like to experience that for months; years; decades.
  - code_duck 8y ago
    I think the conversation about that came up with chronic fatigue. These days it’s used to describe mild hangover-like states, mostly. What people with celiac suffer is more like the confusion that comes with multiple sclerosis. As far as other people’s ‘brain fog’ I think they’re referring to a much more mild condition. Self described sensitivity to gluten is on the rise. Possibly some gluten intolerance is on the rise, too. However, incidence of -actual- celiac disease as confirmed by biopsy has not changed, but screening and diagnosis have gotten a lot better.
    - kaitai 8y ago
      There are actually some very interesting studies looking at blood samples from the 1950s, for instance, that indicate that celiac is much more common than it used to be. See for instance "Increased Prevalence and Mortality in Undiagnosed Celiac Disease" in the journal Gastroenterology, July 2009.

code_duck 8y ago

A lot of your symptoms sound similar to some things that I have been through. I found out that I have celiac disease, after suffering through a lot of physical symptoms which were sometimes paired with mental symptoms such as confusion or mood swings, which are common with celiac. The exact cost seems to be a mixture of things… release of neurotransmitters and immune system chemicals, disrupted gut flora, chronic pain and discomfort, and malnutrition from poor absorption. Like yours, it’s a long story.

theprotocol 8y ago
I don't have any statistics, but judging from the number of sites and blogs that have popped up that deal with similar conditions, this seems to be an increasingly common problem. It seems like you could now speak about brain fog and everyone would understand what you meant, and I don't think that was the case 15 years ago. I've only ever made 2 top-level comments related to this issue on HN and they have surprised me with the amount of attention they generated. A lot of people are going through desperate times because of conditions like this. It's hard to appreciate how bad it can be just by trying to imagine the symptoms for an instant. It's much harder to imagine what it feels like to experience that for months; years; decades.
- code_duck 8y ago
  I think the conversation about that came up with chronic fatigue. These days it’s used to describe mild hangover-like states, mostly. What people with celiac suffer is more like the confusion that comes with multiple sclerosis. As far as other people’s ‘brain fog’ I think they’re referring to a much more mild condition. Self described sensitivity to gluten is on the rise. Possibly some gluten intolerance is on the rise, too. However, incidence of -actual- celiac disease as confirmed by biopsy has not changed, but screening and diagnosis have gotten a lot better.
  - kaitai 8y ago
    There are actually some very interesting studies looking at blood samples from the 1950s, for instance, that indicate that celiac is much more common than it used to be. See for instance "Increased Prevalence and Mortality in Undiagnosed Celiac Disease" in the journal Gastroenterology, July 2009.