SIBO or gastroparesis? Please help - I am alone

[TenTen99]

Type 1 diabetic. 4 months ago, I suffered bad food poisoning. I have lost 28 pounds since and my body refuses to gain weight.

Anything I eat, it comes out heavily the next day. If I have green vegetables or high fat food (takeaway), it will be very thick cream like diarrhea. If I just eat crabs, it will be solid form but crumbly diarrhea.

I have seen a gastro specialist that is not of diabetic background and he said it was post infectious IBS. However, I am learning this is most likely SIBO but do not know what the original of this is. I am going to take a SIBO breath test.

My NHS diabetic team do not see the concern. I had an appointment for May, but it overlapped with my NHS physio appointment (for what SIBO is doing to me) & I thought I'd reschedule. Bad mistake. 2 months for appointment. Just before the appointment, I did a stool test with the diabetic team for parasites and also pancreas function, but they refuse to give me results over the phone. Telling me only consultants can do this.

I am now nearly skin and bone. No one to turn to, my family do not understand diabetes and so have no concept of how serious I am... so I turn to where I can: other diabetic type 1s. I have now decided to drink meal replacements, as I am learning by myself that SIBO or gastroparesis that caused SIBO means the bacteria in my small intestines are eating all my nutrients.

Any time I eat solid food, I feel gassy, sick, bloaty and my sugar levels have never been the same.

15 years diabetic. Good sugar level controls since I was diagnosed as a teen.

Should I go to this SIBO breath test or push for my diabetic team to see me ASAP???? And if its gastroparesis, what help can I get?

 

[Brunneria]

Hi @Ten1993 (or @TenTen99 )

i feel your pain!
i am not T1 and I ended up not having SIBO, but for a while there, I thought it very likely.
(my situation ended up being a variation of IBS caused by an imbalance of gut microbes, but not as high in the intestine as SIBO. Mine got much worse with a ghiardia infection that seemed to leave my gut ridiculously over sensitive to just about everything).

Like you, i floundered around trying to work out what it was. Food intolerances went through the roof, IBS ‘events’ happened regularly. I found eating carnivore helped, and I stuck with that for 5 years, functional, but not ‘well’.

I tried all sorts of things, including an elemental diet for a few weeks, in case it was SIBO. I assume those are the shakes you will be doing?
I found that the elemental diet shakes were the most peaceful my gut had been for years, but (since I am a diet controlled T2), the carb intake was a problem. I ended up sipping slowly, all day, in order to drip feed carbs and prevent sugar spikes from 3 or 4 shakes a day. A T1 might find using insulin avoids that problem (though timing might be tricky, since elemental diet shakes don’t require digestion, so the glucose hits the bloodstream insanely fast).

Things improved a bit after the shakes, and I limped along by eating carivore (fats always digested well, protein OK, carbs okish, and even tiny amounts of fibre were DISASTROUS). I was definitely suffering malnutrion, even with all sorts of supplements, so I assume it was malabsorption, since I just wasn’t absorbing all the nutrients I was making sure I ate.

Eventually, I kind of lost it, seriously afraid of the long term health effects of long term malnutrition, inflammation, food intolerances, insomnia, the IBS, and so on. At one point my gums started bleeding, and a blood pressure monitor cuff caused blood blisters. I had no idea what was going on so it took me a while to try increasing my vit C from 2-3x the RDA, to 40x the RDA, and within 2 days my gums healed. So my guts were absorbing so poorly I had take mega doses of lots of nutrients In order to absorb what i needed.

So (in desperation) I went to a nutritionist who suggested a v expensive private stool test to see what gut flora I had.

Marvellous woman. I am profoundly grateful to her.

9 months later, I am eating a huge variety of veg, some of the lower carb fruit, masses of fibre, my gut is functioning the best I have known it during my adult life, I am no longer depressed, insomniac and most (all?) of my food intolerances seem to have disappeared. It is amazing.

It turns out that I had some bad gut issues on holiday in my teens (France) and 20s (Israel), which left my gut unhappy and prone to problems. Then 6 yrs ago the ghiardia kicked everything up a gear. She told me that the carnivore eating must have kept a lid on the bad gut microbes that had probably been inside my intestines for decades and exploded following the ghiardia, but even carnivore had never quite starved the microbes out. The bugs in question were feeding off the protective mucous layer that should protect the gut lining from foods, chemicals and nasty bugs, which left me with endless inflammation and vulnerable to IBS, food poisoning and so on.

The nutritionist suggested very slowly (a half teasp at a time) that i introduce pre and pro biotics plus the foods that would cultivate beneficial bacteria back into my gut. Then they would build healthy populations and end up starving out the nasty bugs.

The slow, steady return to health has been absolutely wonderful.
I am now on the opinion that cultivating a healthy gut biome is one (poss the most important) thing vital to health, and a healthy immune system.

I realise that my health issues and story are different to yours, but I hope you can spot some similarities, and maybe take some hopeful reassurance that you may find a way to get better.

 

[TenTen99]

Hi @Ten1993 (or @TenTen99 )

i feel your pain!
i am not T1 and I ended up not having SIBO, but for a while there, I thought it very likely.
(my situation ended up being a variation of IBS caused by an imbalance of gut microbes, but not as high in the intestine as SIBO. Mine got much worse with a ghiardia infection that seemed to leave my gut ridiculously over sensitive to just about everything).

Like you, i floundered around trying to work out what it was. Food intolerances went through the roof, IBS ‘events’ happened regularly. I found eating carnivore helped, and I stuck with that for 5 years, functional, but not ‘well’.

I tried all sorts of things, including an elemental diet for a few weeks, in case it was SIBO. I assume those are the shakes you will be doing?
I found that the elemental diet shakes were the most peaceful my gut had been for years, but (since I am a diet controlled T2), the carb intake was a problem. I ended up sipping slowly, all day, in order to drip feed carbs and prevent sugar spikes from 3 or 4 shakes a day. A T1 might find using insulin avoids that problem (though timing might be tricky, since elemental diet shakes don’t require digestion, so the glucose hits the bloodstream insanely fast).

Things improved a bit after the shakes, and I limped along by eating carivore (fats always digested well, protein OK, carbs okish, and even tiny amounts of fibre were DISASTROUS). I was definitely suffering malnutrion, even with all sorts of supplements, so I assume it was malabsorption, since I just wasn’t absorbing all the nutrients I was making sure I ate.

Eventually, I kind of lost it, seriously afraid of the long term health effects of long term malnutrition, inflammation, food intolerances, insomnia, the IBS, and so on. At one point my gums started bleeding, and a blood pressure monitor cuff caused blood blisters. I had no idea what was going on so it took me a while to try increasing my vit C from 2-3x the RDA, to 40x the RDA, and within 2 days my gums healed. So my guts were absorbing so poorly I had take mega doses of lots of nutrients In order to absorb what i needed.

So (in desperation) I went to a nutritionist who suggested a v expensive private stool test to see what gut flora I had.

Marvellous woman. I am profoundly grateful to her.

9 months later, I am eating a huge variety of veg, some of the lower carb fruit, masses of fibre, my gut is functioning the best I have known it during my adult life, I am no longer depressed, insomniac and most (all?) of my food intolerances seem to have disappeared. It is amazing.

It turns out that I had some bad gut issues on holiday in my teens (France) and 20s (Israel), which left my gut unhappy and prone to problems. Then 6 yrs ago the ghiardia kicked everything up a gear. She told me that the carnivore eating must have kept a lid on the bad gut microbes that had probably been inside my intestines for decades and exploded following the ghiardia, but even carnivore had never quite starved the microbes out. The bugs in question were feeding off the protective mucous layer that should protect the gut lining from foods, chemicals and nasty bugs, which left me with endless inflammation and vulnerable to IBS, food poisoning and so on.

The nutritionist suggested very slowly (a half teasp at a time) that i introduce pre and pro biotics plus the foods that would cultivate beneficial bacteria back into my gut. Then they would build healthy populations and end up starving out the nasty bugs.

The slow, steady return to health has been absolutely wonderful.
I am now on the opinion that cultivating a healthy gut biome is one (poss the most important) thing vital to health, and a healthy immune system.

I realise that my health issues and story are different to yours, but I hope you can spot some similarities, and maybe take some hopeful reassurance that you may find a way to get better.

I cannot thank you enough for your response, it has given me hope and just knowing someone has responded is helpful.

I will seek out a stool sample as well. I was wondering what you did to cultivate a healthy gut biome? I understand everyone's stomach and situation is different, but would be a good framework to look into. At the moment, I have yakult every morning for another 6 weeks. Not seen dramatic improvements.

Thanks again!

 

[Brunneria]

No problem!
I will happily tell you how it worked, but please bear in mind that your body, your diabetes, and your guts are different from mine, so this may not work for you - and you need to eliminate the gastropareisis and the SIBO before you start inhaling fibrous foods which may cause further problems.

The nutritionist told me that any form of pre and pro biotics would help by developing a healthy and varied gut biome.
i was desperate enough to go straight onto the internet and watch every YouTube vid I could find. Then I bought EVERYTHING and then introduced them very slowly. Eventually I ended up having some of all the following every day
Plain (not flavoured or sweetened) kefir
Miso paste
sauerkraut (must be unpasteurised)
kimchi (must be unpasteurised)
kombucha (unsweetened, zero alcohol)
live coconut yogurt (unflavoured, unsweetened)
since then I have added umeboshi plum paste (unpasteurised) and unpasteurised pickles (sliced baby cucumbers)
I also took S. boulardii capsules

then, once you have some of those live bacteria inside you, you have to keep them alive in a thriving colony, and that means you have to feed them food they like - which is basically as big a range of soluble and insoluble fibre as you can.
She suggested chicory coffee, mushrooms, rice (I went with wild rice, since it is lower carb), lentils, pulses, beans, nuts, avocado, assorted veg, flaxseed… also avoiding processed food, sugar, fast carbs, etc, of course.
i found it very difficult (and slow) to introduce these vegetable foods so slowly it didn’t kick the IBS off, yet still managed to build the colonies. I also needed to keep things as low carb as possible to control my T2.

In the end, I got savvy, and now eat a breakfast of kefir, coconut yog, flaxseed, Purition real food protein powder, and a few nuts, with a chicory coffee. That ticks lots of boxes. Then I have kombucha with my evening meal, and a spoon of sauerkraut or kimchi with every meal, without fail. Oh, and a mug of hot (not boiling!) water with miso as a drink every day.

I have gone from eating carnivore ‘curry’ (just meat with a light dusting of spices), to what I ate this evening, a chicken and veg curry (spices, onion, garlic, butternut squash, chicory, pointed red peppers, courgettes, tomatoes, broccoli, and less than 10% meat, with pickles and live yoghurt).
my guts coped with it all, and feel GOOD on it - but it has taken 9 months of tiny incremental changes To get to this point.

Also, I recently signed up for the Zoe Study (I start in Aug). They suggest eating 30 different plants a week to cultivate a healthy gut biome, with no ultra processed foods, and there is another stool test (not cheap, and I have to pay) as part of the study. I am fascinated to find out how my gut biome has changed. Ultimately, the Zoe Study is intended to achieve personalised nutrition, based on how your body processes carbs, fats and proteins, and to help you feed/starve the appropriate gut bugs. So everyone gets to eat what suits their body, after tests to establish what the requirements are.

 

[TenTen99]

You have given me hope. Thank you, @Brunneria