• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

BeADocToGoTo1

Senior Member
Messages
536
Hi @outdamnspot,

It is beyond frustrating when you cannot find the help needed and people around you, including doctors, do not take it seriously. I went through all of that as well and had 20+ specialists tell me I was fine, or it was in my head. I also was sensitive to absolutely everything. Nausea for about 6 months straight, to the point I had to take anti-nausea meds to get some food down (mostly home made soup at the time). This is why I had been replying to your posts about looking into ruling out some of the malabsorption possibilities, including EPI.

EPI or Exocrine Pancreatic Insufficiency was the most important underlying cause of all my gut issues, food sensitivities, malabsorption, leaky gut, yeast and bacterial overgrowths, muscle and bone wasting, depression and a myriad of other symptoms. Symptoms started stealthily but progressively became worse.

In your case EPI absolutely needs to be ruled out by your gastro! Uncovering this literally saved my life.

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.

It does not work that way. Bactrim will not magically make you feel better. If it is SIBO, it is a multi-month, multi-pronged approach that is needed as I mentioned in a prior post. I would be very careful with just throwing antibiotics at it. You could make things worse and be left with a bunch of resistant ones.

A dietician is not a bad idea at all, especially with trying different approaches. They may be familiar with very specific things to avoid or try and slowly build up.

However, I agree that if you cannot tolerate anything it may be something to try a little later.

  • 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.

If you can tolerate it, add it. Can of sardines in water or some smoked salmon perhaps. When you mention it is not filling enough I wonder again if that is more to do with your body signaling it is nutrient deficient and not breaking down the food properly.

  • 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.

I used a Tanita scale with body composition monitor for a rough indication of weight, body fat %, body water %, muscle mass, metabolic age, bone mass, visceral fat, and basal metabolic rate.

https://www.tanita.com/en/understanding-your-measurements/

  • 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?

It is something simple to try and can be lifesaving as it was in my case. It 100% resolved my food intolerances and food sensitivities, along with dozens of other symptoms. Before I became ill I could eat absolutely anything. At my worst I could barely tolerate even some clear bone broth or rice. Everything hurt my stomach and intestines and made me nauseous and doubled over.

It will just help break down food into usable nutrients. Get the enteric coated ones preferably. But over the counter ones are something you can try immediately. They are taken during the meal. A no brainer to try.

If you also have gallbladder issues, you can try an oxbile supplement to help break down fat.

  • 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.

For your gastroenterologist

Please discuss with him the following crucial elements.

1. EPI or Exocrine Pancreatic Insufficiency:
  • PERT. Some doctors will prescribe pancreatic enzyme replacement pills like Creon to see whether your symptoms go down. You can also buy over the counter ones, but they will be unregulated in terms of strength. Better than nothing though, and they will help you break down food.
  • Stool test: fecal fat level and distribution (checks if you have issues with different types of fat intake and digestion). A 24 hour collection test is pretty standard.
  • Stool test pancreatic elastase
  • Blood test fasting trypsin (to see if you produce enough enzyme for protein breakdown)
  • Comprehensive Stool test for parasites, pathogenes, dysbiosis
  • Stool test chymotrypsin (similar to, but not as accurate as elastase)
2. Stomach acid: Is your pH low enough to start digesting food? If it is too high this will exacerbate any SIBO, candida overgrowths, and malabsorption. Are you taking antacids or PPI? Have you tried the simple selftest

A simple unscientific test to approximate acid level is by drinking a quarter teaspoon of baking soda (sodium bicarbonate) mixed in a glass of water on an empty stomach in the morning. This creates bubbles within two to three minutes when mixed with the hydrochloric acid in your stomach. If after five minutes nothing happens, there is a very good chance the pH of your stomach acid is too high (i.e., low stomach acid).

3. Intestinal permeability

@hb8847 wrote some really good points above. Intestinal permeability (a.k.a. leaky gut) is something that your Gastro can also test for. The one I did was:

Cyrex Laboratories - Intestinal Antigenic Permeability Screen

It measures intestinal permeability to large molecules, which can cause autoimmune reactions, inflammation, food sensitivities, malabsorption, etc.

4. Gallbladder function. Yet another element that is important in breaking down food and thus any gallbladder issues can cause malabsorption.

5. SIBO and Candida overgrowth. Already mentioned before. With SIBO, both methane and hydrogen ones should be tested and tackled. Multi-pronged approach is needed as just antibiotics is not enough.
 
Last edited:

outdamnspot

Senior Member
Messages
924
@hb8847 and @BeADocToGoTo1 apologies for not getting back to you, I've been too unwell to spend much time online.

I just had a quick question @BeADocToGoTo1 I ended up getting a prescription for Creon from my GP. I've been nervous to try it because I've read people with severe sensitivities/MCS even react to the ingredients in it, but I guess I have nothing to lose at this point. I was just wondering: if the food sensitivities are secondary to other issues like SIBO, histamine intolerance etc., is there a chance the Creon might still help? I was just feeling a bit torn because my friend's mom (a really smart, retired doctor) thinks I have MCAS and has suggested trying an OTC H1/H2 blocker like Zantac and Zyrtec for the food issues, though likewise I'm nervous about starting anything new. So been a bit torn on which path to go down. Do you think the Creon is a good first choice?
 

BeADocToGoTo1

Senior Member
Messages
536
Do you think the Creon is a good first choice?

Hi outdamnspot.

Creon can help break down food better into usable nutrients. When I was not breaking food down properly these undigested particles created auto-immune type of reactions and all kinds of food sensitivities in my case. Also, because of all the nutrient deficiencies and constant irritations I was unable to heal the irritated lining of my intestines, and thus more particles would cause irritation and another vicious cycle was caused. Since it is made from pig's pancreas it is quite natural of a product, unlike the other two. Of course the coating of the outer pill has some chemicals in it, so perhaps try one pill in the middle of the meal to start, and see how it goes. What strength did the doctor provide? To give an indication, I use close to 100,000 units per meal without issues, but I started much lower.

Zantac and Zyrtec are two totally different animals.

Zyrtec is an antihistamine and could help with allergies. My wife takes it every day to avoid getting hyves. If you are to try it, start it on a different day from Creon so you can track how you feel.

Zantac is a stomach acid reducer, so is only really something to do temporarily if you have e.g. a stomach ulcer or gastritis to bring down stomach acid (increase pH). When I had really bad acid reflux, I took it for a very brief period in conjunction with many other actions to resolve the root cause of acid reflux. Never touched it since. This stuff will reduce your ability to properly digest food and will cause issues when used for long periods. It should not be taken willy nilly. I cringe when I see the ads and hear people just take these like M&Ms and then continue drinking their shite sugary drinks and pizzas.

Have you also looked at some of the other supplements I outlined in Primal Pancreas that help with healing the lining? E.g.:

  • Gl-Encap: Contains deglycyrrhizinated licorice (DGL) root extract, marshmallow root extract, slippery elm bark, and aloe vera.
  • Glutagenics: Contains glutamine, deglycyrrhizinated licorice (DGL), and aloe gel.
  • Pure L-Glutamine: Can help with intestinal irritation and repair of mucosal lining.
  • GI Sustain: Medical food. Great way to get micronutrients and macro nutrients on a sensitive intestinal system. I took this daily for about a year or to get extra calories and micronutrients
 

outdamnspot

Senior Member
Messages
924
Hi outdamnspot.

Creon can help break down food better into usable nutrients. When I was not breaking food down properly these undigested particles created auto-immune type of reactions and all kinds of food sensitivities in my case. Also, because of all the nutrient deficiencies and constant irritations I was unable to heal the irritated lining of my intestines, and thus more particles would cause irritation and another vicious cycle was caused. Since it is made from pig's pancreas it is quite natural of a product, unlike the other two. Of course the coating of the outer pill has some chemicals in it, so perhaps try one pill in the middle of the meal to start, and see how it goes. What strength did the doctor provide? To give an indication, I use close to 100,000 units per meal without issues, but I started much lower.

Zantac and Zyrtec are two totally different animals.

Zyrtec is an antihistamine and could help with allergies. My wife takes it every day to avoid getting hyves. If you are to try it, start it on a different day from Creon so you can track how you feel.

Zantac is a stomach acid reducer, so is only really something to do temporarily if you have e.g. a stomach ulcer or gastritis to bring down stomach acid (increase pH). When I had really bad acid reflux, I took it for a very brief period in conjunction with many other actions to resolve the root cause of acid reflux. Never touched it since. This stuff will reduce your ability to properly digest food and will cause issues when used for long periods. It should not be taken willy nilly. I cringe when I see the ads and hear people just take these like M&Ms and then continue drinking their shite sugary drinks and pizzas.

Have you also looked at some of the other supplements I outlined in Primal Pancreas that help with healing the lining? E.g.:

  • Gl-Encap: Contains deglycyrrhizinated licorice (DGL) root extract, marshmallow root extract, slippery elm bark, and aloe vera.
  • Glutagenics: Contains glutamine, deglycyrrhizinated licorice (DGL), and aloe gel.
  • Pure L-Glutamine: Can help with intestinal irritation and repair of mucosal lining.
  • GI Sustain: Medical food. Great way to get micronutrients and macro nutrients on a sensitive intestinal system. I took this daily for about a year or to get extra calories and micronutrients

The Creon capsules are 10,000 units, I believe. I was told to take 30,000 units per meal for my body weight. Unfortunately, I can't really afford any other supplements at the moment.
 

BeADocToGoTo1

Senior Member
Messages
536
@BeADocToGoTo1 :
You were writing about attacking the biofilm additionally to antibiotics.
Do you have some recommendations how to do that exactly?

Thanks!

Products I used included Interfase, Interfase Plus Enzymes, and Serralase - Proteolytic Enzyme Blend from Klaire Labs, and Biocidin Advanced Formula from Bio-Botanical Research.
 

BeADocToGoTo1

Senior Member
Messages
536
The Creon capsules are 10,000 units, I believe. I was told to take 30,000 units per meal for my body weight. Unfortunately, I can't really afford any other supplements at the moment.

For confirmed EPI, the intial amount that doctors often mention is 500 lipase units per kilogram of body weight per meal. Pay close attention to how your stomach feels. If you start to feeling a burning sensation or ache, lower the amount. If you are taking 3 pills per meal, make sure to stagger them: 1st after the 1st bite, 2nd in the middle, 3rd before the last few bites.
 

outdamnspot

Senior Member
Messages
924
For confirmed EPI, the intial amount that doctors often mention is 500 lipase units per kilogram of body weight per meal. Pay close attention to how your stomach feels. If you start to feeling a burning sensation or ache, lower the amount. If you are taking 3 pills per meal, make sure to stagger them: 1st after the 1st bite, 2nd in the middle, 3rd before the last few bites.

I've tried the Creon the past two days. It's hard to assess the effects so far. I eat two main meals a day (ground beef) and tend to do a water enema afterwards, just because I don't have much natural motility. Apologies for the description, but usually this presents as a kind of 'sludge' with lots of what appears to be undigested fat; after using the Creon, I didn't really notice any of that and was passing more just straight fecal-colored water, so maybe it is helping digestion? I don't notice any pain, but I am in a very bad crash and my gut health is so bad, part of me is (psychosomatically?) wondering if it's making things worse or not.

I guess the best test will be to see if it helps with a food I'm typically intolerant to .. which is basically all carbs at this point?
 

MTpockets

Senior Member
Messages
202
Location
AZ, USA
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?
I'm not sure why others are taking l-glutamine, but for me I took it to rebuild my stomach not to kill anything. As someone with celiac I know it is one of the more prominent nutrients needed to repair intestinal damage. So at least in my case the effect is real and proven, not placebo.
 

boolybooly

Senior Member
Messages
161
Location
Northants UK
Very sorry to hear of your difficulties outdamnspot. I have had problems myself and recognise some of what you are saying though its not safe to assume its exactly the same and what works for me will work for you, it may or may not but the best I can do is tell you about things that have helped me.

Top of the list is I have been taking a tablespoonish (a dollop) of apple cider vinegar (ACV) with mother in my drinking water for a few months now. I was in real trouble before this as I was getting headaches from everything except meat, but this helped a lot along with other changes below.

I dont eat any potato or other nightshades now as that is really bad for me as it causes mouth ulcers++ and I dont eat coconut oil dairy or palm oil because I got into a bad situation when I tried a high coconut oil diet and it made me unwell, very prone to unbelievable oedemas in my upper respiratory tract causing nasal polyps and even temporary deafness. That same inflammatory syndrome made me prone to headaches due to vegetables with lectins, even green lettuce and broccoli.

I later realised it was probably due to medium chain triglyceride (MCT) overdose and there is evidence it can cause TH2 shift type hypersensitivity, even anaphylaxis. So now I make sure I keep the MCTs proportionally low in my diet and it really has changed things. I can now eat fresh salad with grated carrot which is a nice complex carb plus celery and lettuce along with pecan nuts and a dressing of ACVwm and maple syrup and walnut oil. I think the ACV may help with acidifying the stomach.

I have also been finding white cassava garri is OK as a carb source, I mix it with salt, garlic and boiling water into a soup or stodge (called fufu in some parts of Africa) and it is palatable and can be mixed with meat or sardines or mayonnaise to good effect. It has half the carb per mass of refined starchy carbs like wheat or even rice and does not cause as bad constipation, as I think the gut holds on to carbs as in evolution it was a "good" food to make the best of by digesting as long as possible, garri is less stimulating of whatever it is that constipates me if I eat rice or wheat flour products. I believe garlic has a bacteriocidal activity and I like the taste so have plenty of that with carby food.

Hope that helps, got to get some sleep.

links to related posts
https://forums.phoenixrising.me/thr...ation-made-worse-by-honey.52424/#post-2217200

https://boolyblog.blogspot.com/
 

boolybooly

Senior Member
Messages
161
Location
Northants UK
P.S. I forgot to mention that to eat pecans I have to roast them at a low temperature (120°C in an electric fan oven) for two hours to denature whatever it is that otherwise would make them inedible for me. The low temperature is to avoid acrylamide etc formation.

Also I think ACVwm, besides acidifying the stomach and helping digestion, can change biota and has probiotic qualities due to its complex of fermentation products, which is why it needs to be the "with mother" variety.

Also forgot to mention the full range of nightshades is surprising as it includes bell peppers, tomatos, chilli peppers also blueberries and aubergines (eggplant); google will find you a bunch of lists. I have to avoid all of them and also have to avoid olives for the same reason which are not nightshades, which suggests its a reaction to the alkaloids which both olives and nightshades contain.