Recalcitrant SIBO ongoing for 3 years

[dogtrainer]

32 year old female, symptoms (burping constantly, food not moving, delayed emptying) presented acutely after 6 years of keto and 1 year OMAD. Obviously this dietary strategy burdened my system and lowered digestive output. but I have been working at recovery for nearly 3 years and It seems no matter how “simple” or “digestible” I make my diet, the food just sits there and feeds bacteria.

one practitioner thought I had A B1 deficiency leading to dysautonomia. Megadosing B1 worked and I could eat 5 foods that month (yay!), but only for a month. Now no matter how much B1 I take the food just sits there.

same with thyroid. Can take high doses of T3 and still bloat, burp, constipated.

same with carrot salad.


I have tried everything under the sun and nothing has really worked persistently. When my digestion slows down I blow up to 6 months pregnant looking even after eating one bite of meat, one teaspoon of honey, or taking a sip of water. I have a complete and total loss of appetite. Food simply doesn’t appeal to me ; I only eat so I don’t pass out at work.

Even the supplements I take (B1, antimicrobials, ginger, cascara, magnesium etc) cause me to bloat up. Some days I feel like I don’t even have room for those pills.

This makes it extremely hard to concentrate.

i am to the point where I will probably need to see a doctor for some type of imaging. But any type of emptying study involves Ingesting radioactive Substances and it freaks me out.

I’m writing here to hear anyone else’s experiences fixing digestion like mine. I am trying not to lose hope.

why do things work for a month or two and then stop working? What am I missing to restore normal functioning to my organism? Am I permanently damaged from a lifetime of not feeding myself properly? what can be done to make stomach acid again?

 

[mostlylurking]

32 year old female, symptoms (burping constantly, food not moving, delayed emptying) presented acutely after 6 years of keto and 1 year OMAD. Obviously this dietary strategy burdened my system and lowered digestive output. but I have been working at recovery for nearly 3 years and It seems no matter how “simple” or “digestible” I make my diet, the food just sits there and feeds bacteria.

one practitioner thought I had A B1 deficiency leading to dysautonomia. Megadosing B1 worked and I could eat 5 foods that month (yay!), but only for a month. Now no matter how much B1 I take the food just sits there.

same with thyroid. Can take high doses of T3 and still bloat, burp, constipated.

same with carrot salad.


I have tried everything under the sun and nothing has really worked persistently. When my digestion slows down I blow up to 6 months pregnant looking even after eating one bite of meat, one teaspoon of honey, or taking a sip of water. I have a complete and total loss of appetite. Food simply doesn’t appeal to me ; I only eat so I don’t pass out at work.

Even the supplements I take (B1, antimicrobials, ginger, cascara, magnesium etc) cause me to bloat up. Some days I feel like I don’t even have room for those pills.

This makes it extremely hard to concentrate.

i am to the point where I will probably need to see a doctor for some type of imaging. But any type of emptying study involves Ingesting radioactive Substances and it freaks me out.

I’m writing here to hear anyone else’s experiences fixing digestion like mine. I am trying not to lose hope.

why do things work for a month or two and then stop working? What am I missing to restore normal functioning to my organism? Am I permanently damaged from a lifetime of not feeding myself properly? what can be done to make stomach acid again?

How much thiamine did you take? Dosage? type? I ask because I've recently recovered from the same thing, via high dose thiamine hcl.

 

[dogtrainer]

2g TTFD, 6g HCL sometimes

 

[Nicole W.]

Don’t know if you’ve tried these yet but they have worked very well for my husband who has SIBO: Biocidin alone for a few weeks then introduce MegaSporeBiotic. Now he takes Biocidin in the morning and MegaSporeBiotic at night. It’s reduced his symptoms by 80%.

 

[Vins7]

How much thiamine did you take? Dosage? type? I ask because I've recently recovered from the same thing, via high dose thiamine hcl.

Did you fix bloating taking thiamine too?

 

[dogtrainer]

Did you fix bloating taking thiamine too?

My bloating was more or less gone for a month on high dose B1 then stopped working.

 

[dogtrainer]

Don’t know if you’ve tried these yet but they have worked very well for my husband who has SIBO: Biocidin alone for a few weeks then introduce MegaSporeBiotic. Now he takes Biocidin in the morning and MegaSporeBiotic at night. It’s reduced his symptoms by 80%.

Thanks, yeah I tried biocidin early on and didn’t help. Not going to add probiotics unless it’s a last resort.

 

[S-VV]

Have you been evaluated for gastroparesis? Some prokinetics may help

 

[mostlylurking]

Did you fix bloating taking thiamine too?

Thiamine has fixed my digestive system. here's a video about it.


View: https://www.youtube.com/watch?v=Pi0O_fzczYA

 

[Vins7]

Thiamine has fixed my digestive system. here's a video about it.


View: https://www.youtube.com/watch?v=Pi0O_fzczYA

this gives me illusion. How much thiamine did you take and in what form?

Did you do other changes un your diet or other aspectos?

 

[JacobG]

Thiamine can work for some people. Often you have to go hard on the anti-microbials/fungals/parasitics and then crowd out the last bugs with strong probiotics. While you do that your diet has to be absolutely stellar. It could be that you also need some hcl/enzymes/tudca for digestion.

 

[mostlylurking]

this gives me illusion. How much thiamine did you take and in what form?

Did you do other changes un your diet or other aspectos?

I take 2 grams of pure thiamine hcl powder a day, divided into two doses, one in the morning and one before 3:00 pm. I follow Dr. Costantini's recommendations here: HDT Therapy I spent about 2 months working up to this high dose. This works for me. I have a long history of gut issues; many people who wind up with Parkinson's Disease start out with gut issues. I developed autonomic nervous system issues, they got worse last fall. I started to get a tremor in my right hand (no more).

I eat a lot of dairy and cooked mushrooms or shredded raw carrot daily. I eat a lot of ripe oranges and orange juice. I eat a lot of gelatin. I eat eggs from my free range chickens. I eat oysters and also liver once a week. I do eat some muscle meat occasionally.

I avoid all nightshade vegetables (tomatoes, peppers, eggplant), also cantaloupe and other melons. These foods cause me allergic reactions. I avoid bananas and pineapple; these foods are high serotonin and I react badly to them. I had leaky gut for a long time; it caused a lot of food allergies. I do not eat nuts, seeds, grains (avoiding PUFA and gluten). I eat at home.

 

[mostlylurking]

My bloating was more or less gone for a month on high dose B1 then stopped working.

How much were you taking? I had to repeatedly increase my dosage over a 2 month period in order to get to a level that continues to work. I started with about 300mg/day of thiamine hcl and worked up to 2 grams of thiamine hcl/day.

 

[mostlylurking]

2g TTFD, 6g HCL sometimes

That is a huge amount. Were you consistent with taking it? My experience is with thiamine hcl; I tried TTFD but it gave me a headache that lasted 36 hours. My dose is 2 grams HCL, I tried taking 2.5 grams of it but I got shooting electrical zapping pains in my legs (a sign of too high a dose) so I backed down to 2 grams.

 

[opson123]

With gastroparesis and slow transit time, the things that helped me the most were butter, coca cola and dark chocolate.

Butter with starch and meat/egg meals (or pretty much every kind of "normal" meal), with every bite you also eat a bit of butter. It helps the food "slide" through. Too much butter will give me diarrhea and too little won't help at all, so getting the amount right is tricky and annoying. It's maybe a tablespoon per meal, depends on the amount of food I eat.

Coca cola and a square or two of 70% dark chocolate after every "normal" meal. Coke helps with shortness of breath after heavy meals and digestion in general. I drink 1 - 1.5 cans, depends on the amount of food I ate. Dark chocolate helps with slow transit time. Went from having a bm every 3-5 days to having it everyday. It's important for me to eat the chocolate after meals as it can trigger my gastroparesis if it's eaten on an empty stomach. Having a bm everyday helped a lot with bloating as well.

If you have issues with coke bloating you, you can try coke zero or pepsi max. I initially also felt really bloated with normal coke and drank pepsi max. I don't know what happened and when, but now I'm able to drink normal coke.

I don't eat starch/meat/"normal" meals that often though. I normally eat UHT low lactose milk (skim or semi skim) with maple syrup and instant coffee, eggs with butter and salt, and dark chocolate and honey as a dessert. After adding dark chocolate to my diet I'm now able to eat like 200g+ of honey without loose stools which I used to get from like tsp or something. Even with these foods I find it important to drink the milk first, then eggs/butter and then dark chocolate and honey. Helps with avoiding the eggs triggering gastroparesis.

Another thing with a protein heavy meal is that I can't eat it without enough carbs or it will sit like a rock in my upper intestines, even if eaten with butter. So coke is great in that regard as well. I also eat honey with the square or two of dark chocolate.

I hope these help. They aren't a cure though.

 

[dogtrainer]

That is a huge amount. Were you consistent with taking it? My experience is with thiamine hcl; I tried TTFD but it gave me a headache that lasted 36 hours. My dose is 2 grams HCL, I tried taking 2.5 grams of it but I got shooting electrical zapping pains in my legs (a sign of too high a dose) so I backed down to 2 grams.

I did a lesser dose for a month and digestion was much improved, it stopped working and I’ve slowly increased to the super heavy doses with no changes. B1 used to cause a feeling of motility thru small intestine. It doesn’t do that anymore.

 

[dogtrainer]

With gastroparesis and slow transit time, the things that helped me the most were butter, coca cola and dark chocolate.

Butter with starch and meat/egg meals (or pretty much every kind of "normal" meal), with every bite you also eat a bit of butter. It helps the food "slide" through. Too much butter will give me diarrhea and too little won't help at all, so getting the amount right is tricky and annoying. It's maybe a tablespoon per meal, depends on the amount of food I eat.

Coca cola and a square or two of 70% dark chocolate after every starch and meat/egg meal. Coke helps with shortness of breath after heavy meals and digestion in general. I drink 1 - 1.5 cans, depends on the amount of food I ate. Dark chocolate helps with slow transit time. Went from having a bm every 3-5 days to having it everyday. It's important for me to eat the chocolate after meals as it can trigger my gastroparesis if it's eaten on an empty stomach. Having a bm everyday helped a lot with bloating as well.

I don't eat starch/meat/"normal" meals that often though. I normally eat UHT low lactose milk (skim or semi skim) with maple syrup and instant coffee, eggs with butter and salt, and dark chocolate and honey as a dessert. After adding dark chocolate to my diet I'm now able to eat like 200g+ of honey without loose stools which I used to get from like tsp or something. Even with these foods I find it important to drink the milk first, then eggs/butter and then dark chocolate and honey. Helps with avoiding the eggs triggering gastroparesis.

Another thing with a protein heavy meal is that I can't eat it without enough carbs or it will sit like a rock in my upper intestines, even if eaten with butter. So coke is great in that regard as well. I also eat honey with the square or two of dark chocolate.

I hope these help.

Thank you. I haven’t had starch in over a year. It gives me instant upper bloating, burping, brain fog that doesn’t go away for several days. It’s painful to eat starch.

on good days I can do a little sugar. Usually though it gives me burping & bloating.

 

[mostlylurking]

I did a lesser dose for a month and digestion was much improved, it stopped working and I’ve slowly increased to the super heavy doses with no changes. B1 used to cause a feeling of motility thru small intestine. It doesn’t do that anymore.

have you tried the carrot salad? with a little vinegar?

 

[dogtrainer]

Thiamine can work for some people. Often you have to go hard on the anti-microbials/fungals/parasitics and then crowd out the last bugs with strong probiotics. While you do that your diet has to be absolutely stellar. It could be that you also need some hcl/enzymes/tudca for digestion.

I have taken betaine with small-moderate improvements several times. I’m currently back on it. It seems to work ok for a week then stops. I can take 20 pills and still burp and get bloated.

Im adding a small dose of zinc, B1, iodine, potassium to the betaine to maybe start coaxing my own acid production again.

 

[dogtrainer]

have you tried the carrot salad? with a little vinegar?

Every day for nearly three years. It’s probably helping me from my digestion being a 1 or 0, but my digestion I would rate as a 3-4 the vast majority of days. If peristalsis isn’t moving at all the carrots feel painful going down.