For those who treated SIBO, did antibiotics change how you tolerated carbs/foods?

[outdamnspot]

Yep, it's me again lol. I mentioned in another thread that I finally got to see a gastroenterologist at the start of the week who diagnosed me with SIBO due to severe food intolerances (he thought breath testing was expensive and a waste of time). Anyway, he gave me an antibiotic (Bactrim) to take for 5 days, but I've been too nervous to start it.

The problem is that I seem to require carbs for my adrenals and general physical health, but these flare up my SIBO symptoms and I grow intolerant after about 2 days and crash (it used to be about a week). Then I cycle off carbs and might feel great for a day or 2, but crash again (presumably due to not consuming carbs). So neither state seems optimal to start an antibiotic because I'm really scared of crashing myself further and just don't know what to eat during treatment, and keep putting it off as a result.

I was curious if anyone with severe food intolerances who treated SIBO went through anything similar? I've actually read some specialists say you *should* be consuming carbs to feed the bad bacteria; I've also read some people say antibiotics suppressed their intolerances and they could eat what they like.

I kind of feel like I will just have to start it on a day where I'm consuming carbs and hope I can continue with carbs during the course.

 

[Archie]

I think intolerance comes mostly from missing some probiotics in gut , or wrong ratio of them, so i dont quite understand the method why use antibiotics . Are sure you wont shoot yourself in the leg by taking antibiotics ?

https://www.medicalnewstoday.com/articles/325560.php

http://blogs.discovermagazine.com/d-brief/2019/01/18/gut-bacteria-food-allergies-microbiome/

https://www.sciencemag.org/news/2014/08/gut-microbe-stops-food-allergies


I would really do the opposite than taking antibiotic, you could start by taking probiotic like this one:

https://www.amazon.com/Advanced-Orthomolecular-Research-AOR-Probiotic/dp/B0082DDQH6

 

[outdamnspot]

I think intolerance comes mostly from missing some probiotics in gut , or wrong ratio of them, so i dont quite understand the method why use antibiotics . Are sure you wont shoot yourself in the leg by taking antibiotics ?

https://www.medicalnewstoday.com/articles/325560.php

http://blogs.discovermagazine.com/d-brief/2019/01/18/gut-bacteria-food-allergies-microbiome/

https://www.sciencemag.org/news/2014/08/gut-microbe-stops-food-allergies


I would really do the opposite than taking antibiotic, you could start by taking probiotic like this one:

https://www.amazon.com/Advanced-Orthomolecular-Research-AOR-Probiotic/dp/B0082DDQH6

To be honest, I don't see how I can shoot myself in the foot further since I can barely eat. The gastroenterologist I saw is a universty doctor and has a specialized interest in food intolerances, and said my issue is probably an overgrowth of bad bacteria.

Most people here say Probiotics are a disaster for SIBO.

 

[Archie]

I have fresh ideas lol

 

[Carl]

Your food intolerance is caused by your Increased Digestive Permeability and only fixing that will eliminate it. I can tell you that all the guides on fixing that on this forum are wrong! L-glutamine cannot and will not fix it. It cannot fix it because IDP is caused by an infection and L-glutamine has no antimicrobial effect. L-Glutamine has nothing more than a placebo effect. All the ideas surrounding IDP are also incorrect and an example of poor quality science IMO. Which is what happens when people ignore what the human body is indicating. I worked all this out long ago but life has been dealing some difficult cards since then. Lyme and countless other problems.

SIBO usually comes from poor stomach function ->hypochlorhydria. That can be a result of Urease positive infection in the stomach. It is fairly easy to get an indication of this if you consume something acidic such as lemon juice. Urease + urea (saliva) + hydrochloric acid = ammonia and carbon dioxide (burp).

Have you tried taking any Pantothenic acid (vit b5)? Why do you need carbs, do you suffer from hypoglycaemia?
Supporting you kidney/adrenal and lowering your cortisol levels might be helpful. It does with me. Tu Si Zi (Dodder seed) helps enormously.

That antibiotic drug contains two antibiotics. What form is it in? Capsules or tablets?

 

[outdamnspot]

Your food intolerance is caused by your Increased Digestive Permeability and only fixing that will eliminate it. I can tell you that all the guides on fixing that on this forum are wrong! L-glutamine cannot and will not fix it. It cannot fix it because IDP is caused by an infection and L-glutamine has no antimicrobial effect. L-Glutamine has nothing more than a placebo effect. All the ideas surrounding IDP are also incorrect and an example of poor quality science IMO. Which is what happens when people ignore what the human body is indicating. I worked all this out long ago but life has been dealing some difficult cards since then. Lyme and countless other problems.

SIBO usually comes from poor stomach function ->hypochlorhydria. That can be a result of Urease positive infection in the stomach. It is fairly easy to get an indication of this if you consume something acidic such as lemon juice. Urease + urea (saliva) + hydrochloric acid = ammonia and carbon dioxide (burp).

Have you tried taking any Pantothenic acid (vit b5)? Why do you need carbs, do you suffer from hypoglycaemia?
Supporting you kidney/adrenal and lowering your cortisol levels might be helpful. It does with me. Tu Si Zi (Dodder seed) helps enormously.

That antibiotic drug contains two antibiotics. What form is it in? Capsules or tablets?

Are you saying lemon juice will worsen a Urease positive infection? I actually consume lemon juice (freshly squeezed) twice a day, for the carbs and effects on digestion, and it does make me burp.

I need carbs because my body simply can't run on protein and fat; I crash badly.

The antibiotic is a tablet .. Why do you ask?

 

[Carl]

No it will not worsen the infection but if there is a urease positive infection present in your stomach then any acid that you consume or when your stomach attempts to produce acid, it will react with the urease enzyme produced by the bacteria and produce ammonia - a considerable amount of it.

It doesn't sound like you need to do any further testing because I would say with confidence that you have a urease positive bacterial infection in your stomach. It is that which is stopping your stomach successfully producing HCl which is not destroying any bacteria/yeast/fungi or parasites. They then colonize your small intestine producing the problems that you are getting. However those bacteria are not your real problem, because as soon as you can get your stomach working and producing acid when it is no longer deactivated by ammonia, any bacteria will be destroyed.

I recommend that you lighten the load on your body by not consuming anything acidic because it is only producing ammonia which your body has to deal with.

I would also guess that you have more than one infection. When a urease positive infection takes control of the stomach other pathogenic micro-organisms can more easily set up home because the stomach cannot destroy them.

I know this from personal experience. I have eaten food which does not require acid to digest such as carrots and my stomach has attempted to destroy something ie I have burped because my stomach attempted to zap something it did not like with acid.

re:antibiotic tablets. I wondered whether they might come in useful to destroy the cause of your CFS. However just swallowing them is highly unlikely to do that because of their biofilm. Capsules would of been better.

 

[MTpockets]

I took antibiotics for SIBO. In my opinion it really helped. Sort of gave my body the leg up it needed to start winning the battle. After the antibiotic I started up with collagen and L-glutamine. I also went pretty hard core on the probiotics, which some studies have shown contradicting results in that they actually HELP with SIBO, not cause problems. I have found that to be the case. I also started a digestive supplement with ox-bile in it.

I was on a very restricted diet for several years, but I attribute a large part of that to the damage caused by my undiagnosed Celiac disease. There was a LOT of damage to repair. 5 years on and I still do the probiotics and fermented foods, but I don't need the enzymes or the l-glutamine anymore. I only have a few foods that are absolute no gos now.

I don't function well low carb either, so I know the struggle. I am happy to say I tolerate carbs pretty much normally now. If I am eating a super carb heavy meal I make sure to eat a larger portion of fermented food with it, and I am just fine. As a side note, all of my carbs come from whole foods. I don't eat sugar ever, and I think that makes a difference as well.

 

[MTpockets]

As an afterthought do you know if you tolerate Bactrim? I took it for a kidney infection once and almost landed in the hospital after two doses. It really lowered my blood pressure bad. I have MTHFR so in hindsight shouldn't have been proscribed it in the first place. Just a sort of PSA.

 

[BeADocToGoTo1]

Yep, it's me again lol. I mentioned in another thread that I finally got to see a gastroenterologist at the start of the week who diagnosed me with SIBO due to severe food intolerances (he thought breath testing was expensive and a waste of time). Anyway, he gave me an antibiotic (Bactrim) to take for 5 days, but I've been too nervous to start it.

The problem is that I seem to require carbs for my adrenals and general physical health, but these flare up my SIBO symptoms and I grow intolerant after about 2 days and crash (it used to be about a week). Then I cycle off carbs and might feel great for a day or 2, but crash again (presumably due to not consuming carbs). So neither state seems optimal to start an antibiotic because I'm really scared of crashing myself further and just don't know what to eat during treatment, and keep putting it off as a result.

I was curious if anyone with severe food intolerances who treated SIBO went through anything similar? I've actually read some specialists say you *should* be consuming carbs to feed the bad bacteria; I've also read some people say antibiotics suppressed their intolerances and they could eat what they like.

There are a number of things here that I would reconsider.

1. Find a functional medicine doctor who is actually experienced with treating SIBO. Your gastro clearly is not. Bactrim is not the solution if you have methane production bacterial overgrowth issues, for example.

2. The breath test is important to determine whether the issue is an overgrowth in methane producing or hydrogen producing or both. If you do not test for it, assume both and take antibiotics for both (e.g. Neomycin and Rifaximin). Just doing one, especially the wrong kind (like Bactrim) will only make things worse.

3. There are a number of other actions necessary for the treatment, which includes supplements for attacking the biofilm, botanicals, prebiotics, probiotics, and of course stopping any insults through food and beverage.

4. Regarding the carb note and cycling. What kind of carbs? How many grams of carbs per meal and per day are you consuming? Are you getting enough micronutrients? Enough healthy fat? Moderate protein (using rule of thumb formula)? How is your blood glucose, insulin and A1c? Steady? Have you looked into nutritional ketosis so that you are not so dependent on spikes and crashes due to glucose?

5. If your intestines and stomach are super sensitive, irritated, leaky gut issues (has this been tested?), mucous lining issues, etc. are you using supplements to help heal? Things like GI-Encap, Glutagenics, L-Glutamine come to mind.

Most people here say Probiotics are a disaster for SIBO.

They do? That is not my experience. When you use antibiotics to open up real-estate, you want to have it be taken up by the beneficial kind. During my SIBO and Candida treatment time I used them multiple times per day, ~30 minutes before a meal and 1-2 hours away from my antibiotics pills.

 

[outdamnspot]

As an afterthought do you know if you tolerate Bactrim? I took it for a kidney infection once and almost landed in the hospital after two doses. It really lowered my blood pressure bad. I have MTHFR so in hindsight shouldn't have been proscribed it in the first place. Just a sort of PSA.

I'm not sure; I may have been on it for sinus issues as a kid. I actually took my first dose about 4 hours ago and felt a little odd afterwards .. kind of light-headed/off-balance, but not sure if it lowered my blood pressure per se. I have MTHFR too. When it affected your BP, was it very obvious? The doctor said if there was an issue he would prescribe something different.

 

[MTpockets]

I had to stay flat on my back or risk passing out. I didn't have a way to measure so I don't know numbers. I know it is on the list to avoid for MTHFR. You may see what else he can give you just to be safe.

 

[outdamnspot]

I had to stay flat on my back or risk passing out. I didn't have a way to measure so I don't know numbers. I know it is on the list to avoid for MTHFR. You may see what else he can give you just to be safe.

Ah, I've been up and about today so never noticed anything along those lines. I do feel very crashed though. It's only a 5-day course and I'd really like to try get on top of these food issues, so am going to keep pressing on for now.

 

[outdamnspot]

There are a number of things here that I would reconsider.

1. Find a functional medicine doctor who is actually experienced with treating SIBO. Your gastro clearly is not. Bactrim is not the solution if you have methane production bacterial overgrowth issues, for example.

2. The breath test is important to determine whether the issue is an overgrowth in methane producing or hydrogen producing or both. If you do not test for it, assume both and take antibiotics for both (e.g. Neomycin and Rifaximin). Just doing one, especially the wrong kind (like Bactrim) will only make things worse.

3. There are a number of other actions necessary for the treatment, which includes supplements for attacking the biofilm, botanicals, prebiotics, probiotics, and of course stopping any insults through food and beverage.

4. Regarding the carb note and cycling. What kind of carbs? How many grams of carbs per meal and per day are you consuming? Are you getting enough micronutrients? Enough healthy fat? Moderate protein (using rule of thumb formula)? How is your blood glucose, insulin and A1c? Steady? Have you looked into nutritional ketosis so that you are not so dependent on spikes and crashes due to glucose?

5. If your intestines and stomach are super sensitive, irritated, leaky gut issues (has this been tested?), mucous lining issues, etc. are you using supplements to help heal? Things like GI-Encap, Glutagenics, L-Glutamine come to mind.



They do? That is not my experience. When you use antibiotics to open up real-estate, you want to have it be taken up by the beneficial kind. During my SIBO and Candida treatment time I used them multiple times per day, ~30 minutes before a meal and 1-2 hours away from my antibiotics pills.

I saw several functional medicine doctors a few years ago when my illness first became 'severe'. Unfortunately, since I'm 90% bedridden now, it isn't really an option physically or financially; here, integrative doctors charge more than specialists, and the stool testing they use (which I did 3 years ago) is $450 alone. Then the breath testing is $300+; my parents wouldn't pay for that. All of that has to be paid for privately. Plus, I am so physically incapacitated by whatever I eat that I wouldn't be able to attend the appointment anyway, or be able to fast for the breath test, or wait 3 weeks for the results; it took me 4 months to see the gastroenterologist and it was pure luck that I was sleep deprived enough to have the energy to make it. I have no choice but to trust the gastroenterologist at this point since if an antibiotic doesn't help, I'm basically screwed. I feel like I'm approaching the point I'd need hospitalization otherwise, and that just isn't going to happen, since I've asked to GPs about it and neither really grasped how severe the food issue is (despite having lost almost 1/3 of my body weight). Maybe when I finally collapse from weakness.

I am following a Carnivore diet at this point and consume mostly fresh ground beef (80/20) which provides a lot of fat. For carbs, I will have beef liver (about 5-10g of carbs a serving). I supplement with Vitamin C and B12, but unfortunately can't afford any other supplements.

I did find a study confirming what you said about Bactrim not treating a methane overgrowth. I'm wondering if I should call him and ask about that. He seemed very nice and not holier than thou like a lot of specialists and said he would change the prescription if I had no/poor response.

 

[MTpockets]

Rifaximin was what I used for the SIBO just to be clear. I don't think the treatment would have helped otherwise.

 

[kangaSue]

The gastroenterologist I saw is a universty doctor and has a specialized interest in food intolerances, and said my issue is probably an overgrowth of bad bacteria.

I think all GI's come to that same conclusion when you've exhausted their limited arsenal of things to try for complicated GI problems. I was told the same thing but eventually found it more likely to be an issue of malabsorption from having (non-occlusive) Chronic Mesenteric Ischemia.
If you're contemplating getting another opinion, I've heard good things in a local gastroparesis facebook group about the Alfred Functional Gut Clinic and the Austin Hospital Intestinal Rehabilitation Clinic in Melbourne for having doctors well versed in treating these sorts of things (GI dysmotility).

 

[BeADocToGoTo1]

... I am following a Carnivore diet at this point and consume mostly fresh ground beef (80/20) which provides a lot of fat. For carbs, I will have beef liver (about 5-10g of carbs a serving). I supplement with Vitamin C and B12, but unfortunately can't afford any other supplements.

I did find a study confirming what you said about Bactrim not treating a methane overgrowth. I'm wondering if I should call him and ask about that. He seemed very nice and not holier than thou like a lot of specialists and said he would change the prescription if I had no/poor response.

Sorry to hear about all those struggles. It is promising that your gastro may be open to suggestions and learning new things. Absolutely discuss it with him. Not attacking the biofilm is another important item to discuss, otherwise the bacterial film (like a coating) can remain intact with the antibiotics not having much of an effect. So then you have unleashed an atomic bomb in your intestines, but the bacteria you wanted to get are still sitting in their bomb shelter, to use a crude analogy. All the good bacteria just got decimated in the process, leaving you with a bigger dysbiosis.

Regarding the carnivore diet:

• Does this include fish? If not, you might be lacking in omega 3, even if 100% grass fed.
• How about eggs?
• How about nuts?
• How about olive or olive oil?
• Ground beef: unless you know that your butcher is on the spot taking a nice cut of grass fed organic beef and mincing it for you, it can be some of the worst meat you could get. Look into proper, whole cuts instead.
• Liver: you have to be extremely careful of the quality here as well, since it is the toxin filter of an animal. This means you are having to process all the stored toxins from the animal liver.
• So would it be correct that your total carb intake for the day is 30 grams max? That is extremely low.
• Are you getting enough high quality, trace mineral rich, salt?
• I may have asked this before (sorry). How is your water quality? Electrolyte balance?

Regarding weight:

• Are you losing muscle and bone weight, or fat weight? Weight loss should never be bone or muscle, and it is important to measure this, even if it is just roughly using a home scale.
• Are you at a healthy fat percentage, or are you losing weight to get to a healthy fat percentage?
• Have you measured how many calories you take in versus how much you would need as your metabolic rate? Your gastro should be able to help you with this as well.
• I may have mentioned this before, but did your gastro do a comprehensive stool test which would include things like fecal fat level and distribution (checks if you have issues with different types of fat intake and digestion), pancreatic elastase (for EPI, pancreas enzyme marker)and chymotrypsin (for EPI, pancreas enzyme marker), parasites, pathogenes. You may also ask him for a fasted trypsin blood test (to see if you produce enough enzyme for protein breakdown).
• Have you tried taking enzymes with your meal to help with absorption? Your gastro again may be able to give you a prescription to something like Creon to see if it helps your symptoms.

 

[hb8847]

I saw several functional medicine doctors a few years ago when my illness first became 'severe'. Unfortunately, since I'm 90% bedridden now, it isn't really an option physically or financially; here, integrative doctors charge more than specialists, and the stool testing they use (which I did 3 years ago) is $450 alone. Then the breath testing is $300+; my parents wouldn't pay for that. All of that has to be paid for privately. Plus, I am so physically incapacitated by whatever I eat that I wouldn't be able to attend the appointment anyway, or be able to fast for the breath test, or wait 3 weeks for the results; it took me 4 months to see the gastroenterologist and it was pure luck that I was sleep deprived enough to have the energy to make it. I have no choice but to trust the gastroenterologist at this point since if an antibiotic doesn't help, I'm basically screwed. I feel like I'm approaching the point I'd need hospitalization otherwise, and that just isn't going to happen, since I've asked to GPs about it and neither really grasped how severe the food issue is (despite having lost almost 1/3 of my body weight). Maybe when I finally collapse from weakness.

I am following a Carnivore diet at this point and consume mostly fresh ground beef (80/20) which provides a lot of fat. For carbs, I will have beef liver (about 5-10g of carbs a serving). I supplement with Vitamin C and B12, but unfortunately can't afford any other supplements.

I did find a study confirming what you said about Bactrim not treating a methane overgrowth. I'm wondering if I should call him and ask about that. He seemed very nice and not holier than thou like a lot of specialists and said he would change the prescription if I had no/poor response.

This sounds incredibly stressful and my heart goes out to you. I am dealing with a lot of similar issues, namely SIBO, severe food intolerances, CFS, neurological symptoms, depression, etc. I also have MTHFR.

For me what has helped so far has been:

- B12 has been a game changer for me with regards to the food intolerances. As mentioned I have MTHFR but SIBO can also inhibit the uptake of B12 and so over time you can become deficient. Simultaneously, some varieties of SIBO produce folate, so careful if taking supplements which contain both - better to do it separately and see how you react.

- The type of B12 is also important, particularly if you have MTHFR issues as you might not be able to process some forms of it. For me Hydroxycobalamin does nothing, not even in injection form. Methylcobalamin or adenosylcobalamin you might want to give a go, and if you have digestive issues it might be worth getting pills you can absorb sublingually.

- Antifungals - Nystatin powder in particular which doesnt get absorbed by the body and so carries very little risk even if you do have an overactive immune system. If you do have a fungal overgrowth in the gut you will experience a die-off reaction from taking it (like the flu). This is good as it reveals the problem, just reduce the dose and work your way up.

- I'm having another stool test done shortly and will share whatever insights I learn from the follow up doctors appointment with regards to the best antibiotics to take to get rid of SIBO.

In the meantime, best of luck. And know that there are others out there who are going through the same shit as you and know how much of a nightmare it is. Keep strong.

 

[outdamnspot]

Sorry to hear about all those struggles. It is promising that your gastro may be open to suggestions and learning new things. Absolutely discuss it with him. Not attacking the biofilm is another important item to discuss, otherwise the bacterial film (like a coating) can remain intact with the antibiotics not having much of an effect. So then you have unleashed an atomic bomb in your intestines, but the bacteria you wanted to get are still sitting in their bomb shelter, to use a crude analogy. All the good bacteria just got decimated in the process, leaving you with a bigger dysbiosis.

Regarding the carnivore diet:

• Does this include fish? If not, you might be lacking in omega 3, even if 100% grass fed.
• How about eggs?
• How about nuts?
• How about olive or olive oil?
• Ground beef: unless you know that your butcher is on the spot taking a nice cut of grass fed organic beef and mincing it for you, it can be some of the worst meat you could get. Look into proper, whole cuts instead.
• Liver: you have to be extremely careful of the quality here as well, since it is the toxin filter of an animal. This means you are having to process all the stored toxins from the animal liver.
• So would it be correct that your total carb intake for the day is 30 grams max? That is extremely low.
• Are you getting enough high quality, trace mineral rich, salt?
• I may have asked this before (sorry). How is your water quality? Electrolyte balance?

Regarding weight:

• Are you losing muscle and bone weight, or fat weight? Weight loss should never be bone or muscle, and it is important to measure this, even if it is just roughly using a home scale.
• Are you at a healthy fat percentage, or are you losing weight to get to a healthy fat percentage?
• Have you measured how many calories you take in versus how much you would need as your metabolic rate? Your gastro should be able to help you with this as well.
• I may have mentioned this before, but did your gastro do a comprehensive stool test which would include things like fecal fat level and distribution (checks if you have issues with different types of fat intake and digestion), pancreatic elastase (for EPI, pancreas enzyme marker)and chymotrypsin (for EPI, pancreas enzyme marker), parasites, pathogenes. You may also ask him for a fasted trypsin blood test (to see if you produce enough enzyme for protein breakdown).
• Have you tried taking enzymes with your meal to help with absorption? Your gastro again may be able to give you a prescription to something like Creon to see if it helps your symptoms.

I appreciate the help, and apologize if I sound defensive at all. I get frustrated because I can barely look after myself anymore, but have effectively been left to deal with this all on my own; it's just like sinking into a deeper and deeper hole everyday where the food reactions get more and more disabling, making it almost impossible to seek out help, and then when I do try to seek out help (at a great physical cost) it just isn't there. I'm baffled that modern medicine can effectively leave you to starve to death. On top of that, my parents give almost no sympathy or financial aid and basically just blame me for the state I'm in -- my mom will tell me I have CFS because "my diet is terrible" and then when I bring up the food intolerance, she says they're probably psychological anyway and if I just had some carbs I'd probably feel better

It just makes me feel helpless because I *wish* I could follow up on the suggestions/advice people give, but often my entire energy envelope is exhausted just trying to make it through the day.

I'm feeling despondent today because I finished the Bactrim course last week and have seen no improvements. I spoke to the receptionist at the GI's office yesterday and expressed my concerns, and she said he would likely follow up with a different abx, but she left a message today saying she spoke to him and he thinks I should see a dietician. How will that help, though, if I can't tolerate any foods? As you said, if I have a methane overgrowth, Bactrim wouldn't have helped anyway, so I don't see how he can consider his work done. I will likely end up trying the Doxycycline I have saved, as it seems to be a more common SIBO treatment, but I am wondering what the minimum amount of time I should probably wait between courses is? 5 days for the Bactrim seems short anyway, as I've seen most SIBO courses going for 10-14 days. Alternatively, there is a probiotic (Symbioflor 2) that helped in the past as well, which I have a bottle of, though I am a lot more ill now than when I first tried it 2 years ago.

• Does this include fish? If not, you might be lacking in omega 3, even if 100% grass fed.

No, I don't really find fish filling enough so tended to avoid it.

• How about eggs?

Intolerant

• How about nuts?

Intolerant

• How about olive or olive oil?

Intolerant

• Ground beef: unless you know that your butcher is on the spot taking a nice cut of grass fed organic beef and mincing it for you, it can be some of the worst meat you could get. Look into proper, whole cuts instead.

Yes, it's all minced to order for me, and the only way I can afford this diet unfortunately; buying whole cuts would be too expensive.

• Liver: you have to be extremely careful of the quality here as well, since it is the toxin filter of an animal. This means you are having to process all the stored toxins from the animal liver.
• So would it be correct that your total carb intake for the day is 30 grams max? That is extremely low.

Yes, but not sure what I can do otherwise as carbs provoke the worst of my symptoms.

• Are you getting enough high quality, trace mineral rich, salt?

Yes, I liberally use sea/himalayan salt on all my food.

• I may have asked this before (sorry). How is your water quality? Electrolyte balance?

I drink fresh mineral water whenever I can. Otherwise it's tap water, though the quality of Australian tap water is supposedly pretty good.

• Are you losing muscle and bone weight, or fat weight? Weight loss should never be bone or muscle, and it is important to measure this, even if it is just roughly using a home scale.

How would I know if I'm losing bone or muscle weight?

• Are you at a healthy fat percentage, or are you losing weight to get to a healthy fat percentage?

I'm not sure.

• Have you measured how many calories you take in versus how much you would need as your metabolic rate? Your gastro should be able to help you with this as well.

Yes, I am roughly meeting my calorie intake needs for the day.

• I may have mentioned this before, but did your gastro do a comprehensive stool test which would include things like fecal fat level and distribution (checks if you have issues with different types of fat intake and digestion), pancreatic elastase (for EPI, pancreas enzyme marker)and chymotrypsin (for EPI, pancreas enzyme marker), parasites, pathogenes. You may also ask him for a fasted trypsin blood test (to see if you produce enough enzyme for protein breakdown).

No he didn't. Maybe I can ask my GP about it.

• Have you tried taking enzymes with your meal to help with absorption? Your gastro again may be able to give you a prescription to something like Creon to see if it helps your symptoms.

No, I guess I was skeptical they would do much for intolerances?

 

[hb8847]

I appreciate the help, and apologize if I sound defensive at all. I get frustrated because I can barely look after myself anymore, but have effectively been left to deal with this all on my own; it's just like sinking into a deeper and deeper hole everyday where the food reactions get more and more disabling, making it almost impossible to seek out help, and then when I do try to seek out help (at a great physical cost) it just isn't there. I'm baffled that modern medicine can effectively leave you to starve to death. On top of that, my parents give almost no sympathy or financial aid and basically just blame me for the state I'm in -- my mom will tell me I have CFS because "my diet is terrible" and then when I bring up the food intolerance, she says they're probably psychological anyway and if I just had some carbs I'd probably feel better

It just makes me feel helpless because I *wish* I could follow up on the suggestions/advice people give, but often my entire energy envelope is exhausted just trying to make it through the day.

I'm feeling despondent today because I finished the Bactrim course last week and have seen no improvements. I spoke to the receptionist at the GI's office yesterday and expressed my concerns, and she said he would likely follow up with a different abx, but she left a message today saying she spoke to him and he thinks I should see a dietician. How will that help, though, if I can't tolerate any foods? As you said, if I have a methane overgrowth, Bactrim wouldn't have helped anyway, so I don't see how he can consider his work done. I will likely end up trying the Doxycycline I have saved, as it seems to be a more common SIBO treatment, but I am wondering what the minimum amount of time I should probably wait between courses is? 5 days for the Bactrim seems short anyway, as I've seen most SIBO courses going for 10-14 days. Alternatively, there is a probiotic (Symbioflor 2) that helped in the past as well, which I have a bottle of, though I am a lot more ill now than when I first tried it 2 years ago.

• Does this include fish? If not, you might be lacking in omega 3, even if 100% grass fed.

No, I don't really find fish filling enough so tended to avoid it.

• How about eggs?

Intolerant

• How about nuts?

Intolerant

• How about olive or olive oil?

Intolerant

• Ground beef: unless you know that your butcher is on the spot taking a nice cut of grass fed organic beef and mincing it for you, it can be some of the worst meat you could get. Look into proper, whole cuts instead.

Yes, it's all minced to order for me, and the only way I can afford this diet unfortunately; buying whole cuts would be too expensive.

• Liver: you have to be extremely careful of the quality here as well, since it is the toxin filter of an animal. This means you are having to process all the stored toxins from the animal liver.
• So would it be correct that your total carb intake for the day is 30 grams max? That is extremely low.

Yes, but not sure what I can do otherwise as carbs provoke the worst of my symptoms.

• Are you getting enough high quality, trace mineral rich, salt?

Yes, I liberally use sea/himalayan salt on all my food.

• I may have asked this before (sorry). How is your water quality? Electrolyte balance?

I drink fresh mineral water whenever I can. Otherwise it's tap water, though the quality of Australian tap water is supposedly pretty good.

• Are you losing muscle and bone weight, or fat weight? Weight loss should never be bone or muscle, and it is important to measure this, even if it is just roughly using a home scale.

How would I know if I'm losing bone or muscle weight?

• Are you at a healthy fat percentage, or are you losing weight to get to a healthy fat percentage?

I'm not sure.

• Have you measured how many calories you take in versus how much you would need as your metabolic rate? Your gastro should be able to help you with this as well.

Yes, I am roughly meeting my calorie intake needs for the day.

• I may have mentioned this before, but did your gastro do a comprehensive stool test which would include things like fecal fat level and distribution (checks if you have issues with different types of fat intake and digestion), pancreatic elastase (for EPI, pancreas enzyme marker)and chymotrypsin (for EPI, pancreas enzyme marker), parasites, pathogenes. You may also ask him for a fasted trypsin blood test (to see if you produce enough enzyme for protein breakdown).

No he didn't. Maybe I can ask my GP about it.

• Have you tried taking enzymes with your meal to help with absorption? Your gastro again may be able to give you a prescription to something like Creon to see if it helps your symptoms.

No, I guess I was skeptical they would do much for intolerances?

outdamnspot:

Are you able to eat anything at all without reacting? People here have mentioned intestinal permeability and while that could well be an issue if you are dealing with immune system problems it will cause symptoms to flare regardless of permeability. The body will respond to any food or substance that enters your bloodstream as a foreign invader and will attack, giving you symptoms. And if you have SIBO, you will likely have nutrient deficiencies which could well be contributing to an immune system problem (vitamin A, D3 and B12 are essential for immune function.)

What symptoms are you getting from foods? Do they change depending on the food? Are they physical, mental, both? Is it just located in one area like the stomach? Do they cause changes in bowel movements? Does it happen immediately or after a delay, or even the next day?

I know I've already mentioned it but if you haven't already please to try some B12 or B-complex supplements - I was in a similar sounding position to you before taking methylcobalamin in particular.

Another thing you might want to consider is whether you have a histamine intolerance. If you do and you eat foods containing histamine you will experience a delayed reaction - a few hours after eating or even the next day. The symptoms can vary, look them up, but generally they including things like diarrhoea, sleep disruption, headaches, anxiety, "fever", aching joints etc.

Histamine can (1) be produced by gut bacteria or (2) be released by your immune system which can itself be triggered by SIBO. If you have a damaged gut lining it also inhibits your body's ability to produce DAO which degrades histamine.

An easy way to check this is to go on a low histamine diet (have a look at some lists online, most veggies and fresh poultry are fine, avoid the skin, as are grains like rice). If it seems to be a problem then longer term you might want to have your DAO levels checked or mast cell activation. You can also buy OTC antihistamines like Cetirizine depending on where you live which might calm down a reaction.

It sounds like you have problems though with several foods so it's likely if histamine is a problem it isnt the only one. If you do have immune system problems then paleo foods are generally better than grains, so you might want to avoid the rice.

Best of luck if you try any of this.