(Confirmed) SIBO Negative – I’m In Remission!

So by some chance, last week I decided to compile all the protocols I’ve done into a document so I could keep track of everything, and share with future practitioners I may work with or with other SIBO patients. I retook the SIBO breath test with lactulose just over 2 weeks ago, and found out the results today. I knew a negative test was a possibility since I’ve been telling people I feel about 75% better, and I’m reacting to less foods than I was before. I feel almost like my old self again. This is nearly as good as we can hope for after having SIBO…. at least Dr. Siebecker says that she sees people get as good as 90% usually, but not usually 100%. I can live with this. Please read the below document if you want information on how I got better:

Chelsea’s SIBO Success

I will say that although all this stuff worked for me, I recognize now more than ever that things that were the key to my getting better may not help others. It’s like once you find the key to treating your SIBO, the key is yours alone and will not work for others. As for what worked best for me, I don’t really know! I tested once when I was diagnosed and the only subsequent test was the negative test. I feel like I experienced the most die-off from the Rifaximin/Neomycin combination treatment. Two rounds of that were needed.

What’s next for me? I’m excited to resume my life, travel and get out more, maybe even have a few restaurant meals in the near future. Drew and I have a trip to Seattle planned in September and I’m excited to navigate that trip with fewer limitations. But the biggest thing I’m excited about is saving some money. I’ve been hemorrhaging money practically this whole year, just breaking even most months. As for diet, my new way of eating (mainly whole foods, mostly organic, free of gluten, lower in carbohydrates without being ketogenic–and generally low FODMAP-ish) is part of my life now, and I don’t mourn the loss of what once was my normal. Not to say I’ll never eat a piece of regular gluten-filled non-organic GMO pizza again, but at least 90% of my diet will continue to be lower fermentation (with FODMAP reintroductions as tolerable).

My advice to anyone still in the trenches of their SIBO treatment: stay the course, do your best at keeping a lower fermentation diet with foods you can tolerate, keep going with treatments and don’t get discouraged. All of my treatments had only about 2 weeks in between so I had a real shot at reducing the bacterial load instead of giving it a chance to build back up. You can do it SIBO warriors!

SIBO-Friendly Fish (or Crab) Cakes Recipe

Hi guys! I always intend to post recipes more frequently on here than I actually do, but the truth is that I eat so simply most of the time that I don’t have much to share. I know how hard it is to stick to the SIBO Specific Food Guide–the list of non-allowable items is so much larger than what you CAN eat, so I find it’s easier for me to stick to the basics rather than trying to recreate foods I miss (though I do that occasionally, when time permits). I also find that it’s easier to recognize what foods or quantities of foods are my “triggers” by eating more simply.

This recipe is an exception to that for me. I adapted it from the following website: The Tastiest Catch SCD Crab Cakes. Obviously I substituted the lump crab meat for canned salmon, which is much cheaper than crab meat. However, I have made it before with crab and it was amazing, so you should definitely try that adaptation as well (pro tip: there are cans of lump crab meat at Costco in the refrigerated section, so I’d get it from them). Also be sure that you are choosing mayonnaise and mustard with safe ingredients. I have found that the Primal Kitchen Avocado Oil Mayonnaise is the only type without sweeteners, garlic or onion added. However, I do not strictly follow the rigidity of the SIBO Specific Food Guide and am personally OK with smallish amounts of sweeteners that are not honey, so for this recipe I used Sir Kensington’s Sunflower Oil Classic Mayonnaise. It’s super high quality and tastes just like homemade. Please also note that Old Bay Seasoning is SAFE on low FODMAP, and I would not skip it here. It’s super delicious and essential. I also would like to note that I believe the almond flour could be substituted for another nut flour if you don’t tolerate almonds well, but I have not personally tried other nut flours to make a recommendation.

Ingredients:

• 3/4 cup mayonnaise
• 1 egg, beaten
• 1 Tbsp Old Bay (or other seafood seasoning)
• 1 Tbsp Dijon mustard
• 1 Tbsp fresh squeezed lemon juice
• 1 Tbsp chopped fresh or freeze-dried chives
• 1/4 tsp cayenne powder (this is optional; also I like it spicy so your tastes may differ)
• 1/8 tsp freshly ground black pepper
• 1 16 oz. can (large) of canned Salmon, picked over for skin/bones (I get the Wild Alaskan canned salmon from Trader Joe’s – alternatively, you could buy a boneless, skinless canned salmon or use leftover salmon filet chopped into pieces) 
• 1 cup blanched almond flour
• Oil, for cooking (I use either Avocado Oil or Coconut Oil)
• Lemon wedges, for serving

Directions:

1. Mix egg, mayo, Old Bay, Dijon, lemon juice, chives, (cayenne, if using), and black pepper in a medium bowl.
2. Fold salmon gently into mayo mixture. Be careful to leave some chunks of salmon for texture.
3. Fold in the almond flour just until nicely blended — do not over mix.
4. Take a table spoon and scoop out about the size of a golf ball, pressing them into cakes.
5. Heat a large sauté pan over medium heat and add enough oil to coat the bottom of the pan.
6. Cook crab cakes 2 to 3 minutes per side, or until crab cakes are golden brown on both sides. (Temperature may need adjusting)
7. Serve with tartar sauce and lemon wedges. Note: I actually use Primal Kitchen’s Chipotle Lime Mayo for dipping, but please know it does contain garlic powder as one of the last ingredients, so I would omit if you are especially sensitive to garlic.

Hope you guys love this recipe as much as I do!

Round 5: Another Herbal Protocol

Hello to my fellow SIBO peeps! I hope you all had a symptom-free Fourth of July (for those that celebrate it). I wasn’t plagued by any of my digestive-related symptoms for the holiday, which I am extremely happy about (but I did have a pretty gnarly headache throughout the weekend, which has been coming and going everyday this week as well). This past weekend, I took the breath test again to see where my numbers are at. When I initially spoke with my doctor, I was still pretty symptomatic, so I believed that re-taking the test would just give us information on my progress, without thinking there would be a chance of the test coming back negative. My doctor also ordered the IBS Detex blood test finally, which is Quest’s version of the test created by Dr. Pimentel, which ultimately identifies if your SIBO is autoimmune in nature (the autoimmune response is from your body creating these anti-Vinculin antibodies, which basically attack your Migrating Motor Complex – you can read more about it here). I’m still waiting to hear back for both tests and will definitely update you all with the results.

My doctor actually explained to me when ordering the breath test that most patients feel the best post-antibiotics about 4-6 weeks afterwards, so relief is not instant for most people–which I can say aligns with my experience. Since I have now been off the antibiotics for about 4 weeks, I can say that I feel 60-70% better. I’m not getting the gurgling-gas feeling that I normally have within an hour of a meal. My bowel movements are super regular. I’m feeling like I can eat more simple carbohydrates like fruit without having a reaction. I am not completely symptom free, and I’m still treading carefully around higher FODMAP foods, but I am incorporating a few while keeping my symptoms low. I think there is a chance that my breath test could come back negative, or at least significant improvement. I actually feel hopeful for the first time since getting this diagnosis, and I feel like even if I’m not negative for SIBO yet (or in the case of autoimmunity, never will stay in remission), I know I can manage this condition. Prior to feeling all the symptom improvement, I had purchased a bunch of herbals to take under the guidance of my integrative dietitian. Since I already spent all the money on them, I decided to proceed with taking them. I will stop if my results come back negative, which I expect to receive in a few days. I started at a full dose rather than starting low and ramping it up because my body tends to not react much to medicine, and I haven’t felt any negative effects, which signals to me that there isn’t die off because there’s nothing left to kill… so I’m super hopeful about that!

Regardless of the outcome, I will keep updating this blog, hopefully with some lifestyle tips that help me manage having digestive issues. So far, I will say the biggest thing that has helped me is just planning ahead as much as possible. The answer for why this is so helpful is two-fold: (1) Managing stress with IBS/SIBO is probably the number one key to feeling better. I know that SIBO isn’t brought on by stress, but it certainly can be exacerbated by it. If you aren’t sleeping well because you’re worrying about things, it has a compounding effect. One of my biggest SIBO symptoms is fatigue, so getting a good night’s sleep has been crucial, and a huge factor in that is keeping stress low–so for me, even if my life is a predictable routine, I like it that way so much better than dealing with the stress of trying to figure out what to eat, when to do the shopping, whether or not to go to the gym, etc. And (2) it gives me more time to do the things I enjoy doing, like spending time with my boyfriend, family, and puppy!

Also remember, it’s about being flexible. I am not very flexible when it comes to my “schedule”, but I can be when I need to be. Yesterday, I went to my parents’ house for Fourth of July dinner (on a work night! – this is rare for me).  I knew beforehand that I still wanted to be in bed by about 9pm (yes, I know that’s early, but that works for me– I need a minimum of about 8 hours of sleep every night, and I wake up at 5am so I have time to work out before going to work, which sets my digestive system up for success too!). My life is very regimented normally, so my plans for the evening were to take a shower, prepare my breakfast and lunch in advance (sometimes I cook eggs in the morning, but I wanted chia pudding, which needs to soak overnight), and also lay out some clothes for the next day (both a gym outfit and work clothes). Since I knew I wouldn’t be coming back until later, I took my stress out of the equation by working ahead. I took a shower before heading over to my parents’ house, prepared my meals early, and laid out weather-appropriate clothes. By thinking ahead, I was able to enjoy my time with my family much more, knowing I could come home and basically put on my pajamas and head to bed. Of course, we’re all different and what works for me may not work for some of you, but preparation is huge for me.

Anyways, I will continue with the herbal protocol until I hear the results of my SIBO test! Wish me luck ya’ll!

Managing Life and SIBO

It’s been a bit since I wrote a post on my progress. It’s sort of one of those situations where no news is literally just no news. Do any of you sometimes feel like a broken record with talking about SIBO with friends and family? Where it consumes at least half of your waking thoughts? You dream about different treatments and them actually working. You start surrounding yourself with other SIBO friends in far away places just because you know they are someone you can talk to who understands at least a little bit what you’re actually going through. I feel so bad for my family, boyfriend, and friends that they have to put up with listening to me talk about this diagnosis constantly, what it means for me, my limitations, what the prognosis is. I’m tired of talking about it too, but I’m obsessed. Obsessed with finding out more information, of finding relief for myself.

Man, I’m getting really burnt out from it, and I feel so weak admitting that because I know many of you have been suffering with this “diagnosis” for years and I’ve only just been diagnosed since December 2016. I started seeking out treatment for my digestive issues in May of 2016. I had problems for a few years before that, so all told I’ve probably had SIBO for about 3 to 4 years, and I’ve been actively treating it since February of 2017 (so only about 3-4 months). I just feel like the more information I’ve learned, and especially information shared at the SIBO Symposium this year, the more I have come to terms that there honestly probably isn’t a good solution for most of us yet.

It seems like almost all SIBO patients fall into one of two categories (or sometimes even both): Autoimmune Type (usually presents as SIBO-D) or Methane Type (which we just learned isn’t even technically SIBO, but rather “Bloom”, which we historically have referred to as SIBO-C). For the Autoimmune people, my understanding is that there aren’t any treatments currently being used to prevent the autoimmune response to the Vinculin (the exception would be people working directly with Dr. Pimentel–I believe he is trying a few experimental approaches, but I don’t have information on how successful they have been thus far). The Autoimmune Type usually is responsive to Rifaximin, and patients can expect relief for about 6 months before the relapse ultimately occurs. For Methane producers, we’ve been prescribed Rifaximin and Neomycin, which we’re told is pretty effective–but even if we’re able to get that Methane down (below 3 ppm is Dr. P’s gold standard), we usually don’t have lasting results at all (less than the 6 months seen in Rifaximin). We can’t keep taking a dual course of antibiotics every month, so it isn’t a good solution. And for some of us, if you’re like me, it didn’t provide any lasting relief (less than 1 week) after 2 consecutive rounds. So we have to wait on this new statin drug that’s supposed to interrupt the process by which Archaea make Methane, thus pickling the Hydrogen producers and getting rid of the overgrowth. But that’s at least a few years away, so what do we do in the meantime? Well, at least they are working on it… I hate to imagine my life had I been diagnosed at some point in the 90s, well before any of these treatments. I would’ve been told it was IBS, stress related, sent on my way.

All this being said, I’m doing another round of herbs soon under the guidance of my Dietitian. We just started working together but I really like her so far. I’m transitioning to the SCD + Low FODMAP diet, but totally enjoying adding a little more carbohydrates (in the form of some starchy veggies like butternut squash and fresh fruits). The round of herbs will include Atrantil, which I have been interested in for a few weeks now since it seems to work in a similar way to the statin’s method, rather than a “kill” approach. I’m hopeful that it may work for me, at least for symptom management. But I think after this, I may be done for awhile. My wallet certainly can’t keep up with the expenditures of being consistently on some kind of treatment–I’m pretty much breaking even each month after rent, treatments, food. I’m doing better, though. I’ve been successfully introducing some FODMAPs in moderate portions (2 TB of cooked onions, for example) without any negative effects. I think the mind/gut connection is very strong for me, and I’ve been less stressed lately so my body is recovering from flare ups faster than it normally would, and foods that I thought would trigger a response previously are going down OK. So I think after this, if it doesn’t work at all, I might just keep on with the diet, and stop all the supplements. Not because I’m giving up, but because sometimes I think the healthiest thing for us is to step back, take a break, let the body heal a bit, and then press on. No, the SIBO isn’t going to walk away on its own, but I’m only 24. I need to reclaim some of my social life. I haven’t been a good friend, daughter, or girlfriend since focusing on treatments. I’ve been selfish because I allowed myself to be selfish in the name of healing, but I can only be selfish for so long. Those are just my thoughts at the moment.

 

SIBO Symposium Notes: Overview of Nutritional Therapies

I got a lot of views on the last post, so I’m glad I could be helpful to the SIBO community. Thanks for all of your support. Some of the SIBO Symposium talks were incredibly technical in nature (lots of medical jargon) and being that I am not in the healthcare field (or science for that matter) I don’t know if I could do the topics any justice other than trying to copy what they say word for word, which would be very challenging…. so I think I will stick to the topics that I got the most out of, knowing that most people would also get the most out of them, too. You can probably read about the other topics after some of the experts summarize their takeaways 🙂 or alternatively, NUNM Continuing Education is still selling the recordings, so you can access it that way (I believe it’s $455 for the entire symposium, and $55 per talk). Anyway, the following are my notes from Kate Scarlata’s presentation. I tried to capture as much as I could as accurately as possible. Notes below….

Overview of Nutritional Therapies for SIBO with Kate Scarlata, RDN, LDN

Disclosure: diets that are commonly used in SIBO treatments

• My personal pros and cons to these different approaches
• Deeper dive into the low FODMAP diet: current research, 3 phases of nutritional plan

My Story

• Been a dietitian for more than 25 years
• At 30, when pregnant, experienced a strangulated bowel
  • Had an ovarian cyst removed at 18
  • Adhesions caused the scar tissue to wrap around and strangle the intestine
  • 3 months pregnant with colicky pain, admitted to ER
  • Had 6 feet of small intestine removed, including the ileocecal valve
  • 10 years later, developed abdominal discomfort and bloating
    • It was 2003, nobody yet talking about SIBO
    • Fired her GI, and asked a new doctor to prescribe what she needed

Bacterial Overgrowth

• Heterogeneous condition
• Dependent on what microbes are overgrown in your small bowel to determine what symptoms will occur
  • Some microbes metabolize bile salts, so if bacteria metabolize the bile salts, you will malabsorb fat or have bile acid induced diarrhea
    • Usually presents as IBS-D
  • Carbohydrate metabolizing bacteria generally create the gas and bloating
    • Diarrhea not as common
    • Presents as significant amounts of bloating
  • Gram negative coliforms such as Klebsiella cause inflammation in the gut
    • Will see flattening of the villi (similar to what we see in Celiacs)
    • Typically lower in the small bowel
    • Presents as problems with starches and sugars
  • We all have our own microbial fingerprints
  • Trillions of bacteria in our gut, about 1000 different species
    • We don’t know of a perfect gut microbiome combination
    • Our response to diet is very individual so we must treat with an individual approach
  • Dietary changes can affect the fecal microbial fingerprint in just 1 day

Kate Scarlata’s Viewpoint on each of the diets

• Important sticking point: none of these diets have been studied specifically for SIBO
• We do have a lot of evidence in the low FODMAP diet for patients with IBS, and SIBO and IBS are intertwined
• SIBO Specific Diet
  • Originated from Dr. Siebecker in Portland
  • Will absolutely make you feel better
  • Very restrictive, reduced carbohydrates
  • No science behind this diet
  • In practice: Patients that do this approach are usually malnourished, besides themselves emotionally, and have mindset of legal/illegal which makes them afraid to expand their diet
  • Decrease in quality of life, difficult to eat socially
  • Long term effect on colonic microbiome has not been studied
  • Can result in low fiber, high protein, which is not good long term for colonic microbiome
• Specific Carbohydrate Diet
  • Also very restrictive with no starches, no simple carbohydrates that require enzymes
  • Evidence in kids with inflammatory bowel disease, particularly with those with Chhorn’s
  • First started as a dietary method to treat Celiac’s disease many years ago
  • Popularized by Elaine Gottschall who had a child with Ulcerative Colitis
  • Composed primarily of monosaccharides
    • Category of carbohydrates that are absorbed into the bloodstream
    • Premise is that everyone doesn’t break down these complex carbohydrates due to lack of the enzymes, which feeds harmful bacteria
    • Reality is that there are many fibers that are digested that are prebiotics, so feed probiotic or healthy microbes
    • Majority of people with SIBO are probably not lacking the enzymes to break down complex carbohydrates
  • People usually feel hungry on the diet due to lack of potatoes, rice
  • Science shows us that although fructose is allowed on the diet because it’s a monosaccharide, fructose malabsorption exists in 1 in 3 people (even though this is the primary form of sugar on the diet)
  • Absorption of sucrose and starches likely not a significant problem in most SIBO patients
  • Women are majority of IBS/SIBO patients, and they have less serotonin than men
    • Increase serotonin by complex carbs
    • SCD results in decreased serotonin
  • Methane positive and hydrogen positive = higher risk for hypoglycemia, so risk of not getting enough carbohydrates with this approach
  • Avoids processed foods, focuses on whole foods which is good
  • Improves the quality of the diet
  • Despise the use of terms Legal/Illegal – leads to an unhealthy relationship with food
  • Includes highly fermentable foods like garlic and onion that can create a lot of gas
• GAPS (Gut and Psychology Syndrome Diet)
  • No science, my least favorite
  • Hinges on fear
    • Potentially going to cure food allergies, autism, joint problems, ADHD
    • Targeting children – so parents dealing with sick kids use this diet as a “cure all” for them
    • Recommends skin sensitivity test for food
  • Good because avoids processed foods
  • Fruit cannot be eaten with protein in this diet, which protein helps enhance fructose absorption
  • Meat stock used all day with and between meals
    • Worry of lead contamination overdosing with so much broth
  • Very high in animal fat and protein, not enough carbohydrates
    • High fat can feed archaea (methanogens)
    • Protein has unfavorable metabolites
      • Need balance because we all malabsorb protein
      • Potential for unfavorable bacteria metabolites to feed off of malabsorbed protein
    • Helps reduce some of the bloating but goes too far
  • Low FODMAP
    • Very strong evidence, science based for IBS
      • 60% of people with IBS-D fulfill the criteria for SIBO
    • Moderately restrictive, but intended for short term use to heal the gut, and then liberalize as tolerated
    • Carbohydrate intolerance extremely common in people with SIBO
    • Lactose, excess fructose, and fructans hardest groups for people clinically
    • 50 – 86 patients have a clinically meaningful response to low FODMAP diet
    • Reduces osmotic load that causes diarrhea
    • Reduces gas production in the distal small bowel (reduces food source for bacteria)
    • Associated with less histamine release (maybe because we’re feeding less bacteria with the ability to break down histamine, or could be because reduces distention and mast cells aren’t being activated)
    • Moderately restrictive but allows foods from every food group, which is a good thing
    • Visceral hypersensitivity has not been fully studied, but less pain seems to be an effect of the low FODMAP diet
    • Cons: Can be misused by staying on it indefinitely
      • Should be used as a healing phase, then a reintroduction phase
      • Looks at SIBO as IBS on steroids – may need to be on the healing phase for 6 to 8 weeks, whereas only 2 weeks on IBS
      • Need to work with a dietitian! Many people try to do it alone.
    • Con: reduces GOS (prebiotics) which can cause long term effects
      • Try to reintroduce when tolerated
    • Cons: allows processed foods, less nutrition, less fiber, emulsifiers
  • The Cedars-Sinai or low fermentation diet (by Dr. Pimentel)
    • Not studied, least restrictive
    • Can work for a mild case of SIBO
    • Emphasizes discrete meals and allowing time for the MMC to work
    • It avoids some fermentable foods, but not all
    • Go out, be as normal as you can. Good mindset approach to diet
    • Nutritional inaccuracies
      • Pasta and white bread lack nutrition, have fructans which are highly fermentable for some people
      • Butter not allowed due to lactose, though it has ~ .1g of lactose per TB which most people should tolerate
      • Gluten free diets are low carbohydrate – not necessarily, many products are based on rice which is very high in carbohydrates
    • Allows foods that grow under the ground such as onion, garlic, sweet potato, but these are highly fermentable for most people
  • Fast Tract Diet
    • Not been studied in SIBO
    • Says hinged on science but only based on one case study (with only 9 people)
    • Formula used to judge how fermentable a food is
    • Use sometimes in practice in the sense that if something has a low glycemic index, it takes a long time for the food to be absorbed
    • Some fermentable foods that don’t fit into the equation such as garlic and onion since they are low in carbohydrates
    • Reduces fermentation, so less bloating
    • Allows sucralose, which is controversial, and more recently we have done breath tests after giving sucralose where it can be fermentable based on the individual’s bacteria

 

Low FODMAP is a great starting point for the majority of SIBO patients

• Around since 2005, originated from Monash University in Melbourne, Australia
• FODMAP rich foods are reduced initially, then reintroduced methodically to tailor the diet to the individual
  • We all have our own fingerprint of microbes, so we all react differently to FODMAPs
• FODMAPs are osmotic and pull water into the gut, especially heavy feeling in constipated patients
• FODMAP effects are cumulative
  • We all have our own personal threshold for FODMAPs
• Heightened sense of pain in SIBO patients
• Bacterial fermentation can affect the motility of the gut
• Why are FODMAPs malabsorbed?
  • Very common to malabsorb lactose, for 70% of population this is true
    • Common to have reduction in the enzyme after weaned from breast milk
  • Fructose has a slow transport mechanism and is poorly absorbed
    • Needs glucose for certain pathways
  • Fructans and GOS we all lack enzymes for absorption (but not everyone feels sick from them)
    • Due to various metabolites being made
    • Bacteria and movement of gut different in all of us
  • Polyols malabsorbed especially when inflammation is present
    • Common in Celiacs
    • Absorbed in pores in small intestine
    • Erythritol (a polyol) in presence of fructose results in greater fructose malabsorption, so avoid Truvia!
  • High FODMAP sources
    • Lactose: wet cheeses, milk, custard, ice cream, yogurt
    • Fructose: apples, boysenberry, figs, mangos
    • Fructans: dried fruit, nectarine, persimmon, watermelon, garlic, onion, wheat, chicory root extract
    • GOS: legumes, pistachios, cashews
    • Polyols: apples, apricots, blackberries, cauliflower, mushrooms, sugar alcohols (mannitol, sorbitol)

3 Phase Nutritional Approach

• Remove high FODMAP foods for 2 to 6 weeks
• Try to reintroduce FODMAPs via the Challenge Phase
• Integrate the tolerated FODMAPs back onto the plate
  • Goal: to have the most nutritional balanced diet while controlling the patient’s symptoms

Global FODMAP Research Trials in IBS

• Lot of interest in low FODMAP diet globally
• Small numbers of subjects (only up to 100)
• All studies had dietary advice given by trained dietitians
  • Patients found diet easy to adhere to
  • Efficacy in symptom management (50 to 70% of symptoms)
• Randomized control trial in Australia
  • Comparison between moderate FODMAPs like an average Australian diet to a low FODMAP diet
  • Provided all of the food to make sure diets were compliant
  • Patients analyzed symptoms with visual analog scale
  • Patients with IBS on the moderate FODMAP diet
    • Higher symptoms compared to low FODMAP diet
  • Healthy control patients were OK regardless of moderate or low FODMAP diet
  • 70% of patients that benefitted from the low FODMAP diet were across the board (both types of IBS, constipation and diarrhea)
• Randomized control trial in the US
  • 84 patients
    • 45 on low FODMAP
    • 39 on modified NICE diet (diet used in the UK specific for IBS therapy)
  • Participants were asked if they had adequate symptom relief after a week
    • Not statistically significant results, but the low FODMAP group did a little better
  • People were then asked about quality of life standpoint
    • Patients had a small increase at least with NICE diet but a larger increase with low FODMAP
  • Abdominal pain and bloating were significantly less with low FODMAP diet
• Another study in healthy controls (16 healthy subjects)
  • Wanted to see with an MRI what happened when people ingested FODMAPS, if you could see the distention or gas in the colon
  • MRI taken before they ate food
  • MRI taken after drinking water with glucose, water with fructose, and water with inulin, or mix of water with glucose and fructose
    • Followed up with a scan every hour for a total of 300 minutes
    • After every MRI, they measured the breath Hydrogen level
      • Results: 50% saw an increase in Hydrogen of at least 20ppm after the fructose
        • Quick rise in fermentation but dissipates quickly with fructose
        • No rise when fructose mixed with glucose, absorbed much better (sucrose is glucose and fructose, so it should be well absorbed)
      • 81% showed a rise in Hydrogen after inulin
        • This continues to get higher over time as bacteria ferment it
      • Water content: quick rise with fructose, glucose helps with this
      • Fructans: trouble by fermentation and gas production, not by water content
    • Another study in Canada looking at low FODMAP diet and measuring metabolites (urinary)
      • Low FODMAP diet resulted in 8 fold reduction in Histamine (not sure what that means)
      • Metabolite picture is being evaluated more in recent studies
      • 2 other metabolites increased associated with anti-inflammatory effects (but don’t know the full implications of that)
    • Study presented in 2016 at DDW (Digestive Disease Week)
      • 12 individuals with IBS-D
        • Measured the LPS (a bacterial endotoxin)
          • Found it was twice as high in individuals with IBS-D
          • Put them on a low FODMAP diet and the LPS normalized similar to healthy controls
        • Looked for bacterial richness
          • Bacteria in the gut had much more diversity in the bacteria
        • In animals, took LPS rich feces and put it into rats
          • Administered colonic distention to rats
            • Individuals with IBS-D feces were more sensitive to the colonic distention
            • What’s causing the visceral hypersensitivity?

Application of the Low FODMAP Diet in Kate’s Practice

• Screens all clients for Celiac before modifying diet (makes sure they are eating gluten so the test is accurate)
  • If patient has already removed gluten, she will do the celiac gene testing (usually not covered by insurance – if positive for gene, it doesn’t tell us anything. But if negative, they can rule out Celiac)
• Looks for alarm features like blood in stool, experiencing night sweats
  • Not normal for IBS/SIBO, so she will send them back to their doctor
• Assess for appropriateness for full elimination diet
  • Individuals with eating disorders have dysbiotic colonic environments
    • Often malnourished and have issues with motility
    • Anorexics that have resumed healthy eating have a permanently altered gut microbiome
    • Won’t put patient with a history of an eating disorder on a full elimination low FODMAP diet and always asks patients if it’s a part of their history
    • A lot of people with SIBO have fears associated with eating, but it’s a little different than a true eating disorder
    • If the patient has a history of an eating disorder, allow therapist to evaluate and decide for them if dietary modifications are suitable rather than make that call themselves
    • Looks at clinical hypnotherapy for those patients with eating struggles to modify more the mind/body than the diet
  • Is this individual ready to change their diet?
    • The answer is pretty much always yes for symptom relief
  • FODMAP swaps
    • Find out first what they like to eat to make their diet similar to their old diet without causing problems
      • If they like garlic, incorporate garlic infused oils (fructans are only water soluble, not fat soluble)
      • Onion can also be sautéed in oil, just remove the pieces before making the dish, but make sure you sautee them alone (if you add tomatoes, water is added so the fructans have something to dissolve into – so oil and onion only at first, remove pieces, then add other ingredients)
      • Legumes – keep quantities small
        • Space throughout the day for Vegetarians
        • Canned beans are lower in FODMAPs, but discard the water before eating.
          • Soaked beans do not lower FODMAPs in the same amounts as canned, so stick with canned.
        • Wheat flour is off the table, so bake with gluten free blends
          • 1 for 1 Bob’s Red Mill, Trader Joe’s, King Arthur, etc.
        • No soymilk, but Firm tofu OK
          • Silken tofu is not suitable
          • Edamame is suitable
        • Swap out milk for lactose free, hemp, almond, coconut, rice milks.
        • Sourdough bread is suitable when it’s a slow leavened bread
          • Yeast is often added to accelerate the process, so not low FODMAP
        • Patient improvement
          • With dietitian overview and meal plan, patients saw relief in just 1 week
          • When managing the dietary guidelines alone, can take up to 4 weeks to experience relief
        • No standardized protocol for FODMAP reintroduction
          • Tolerance can change over time, so try again in the future (because gut flora change over time)
          • Consume a quantity of food that is normal for the patient
            • Ex: don’t drink a whole gallon of milk
          • Select foods that only have the FODMAP that is being challenged
            • Apples have sorbitol and fructose, so not a good challenge food
          • If patient passes a challenge, go back to low FODMAP for each continuing challenge
          • Might test 3 groups, take a break for a month, and then do the remaining challenges
          • Failed challenge defined by noticeable negative consequence
            • Not just a single bubble in the gut, it would be more painful gas
            • Constipation returned
            • Ran to the bathroom
          • Mannitol challenge example
            • ½ cup of raw mushrooms (you can cook it but measure raw)
            • Then increase to 1 cup of mushrooms
            • Then increase to 1.5 cups of mushrooms
            • Track symptoms, what else they ate, cooked or raw, and when did they experience symptoms
          • Diet is only one piece of the SIBO “pie”
            • Still need to identify the underlying cause with GI doctor
            • Using motility drugs can help
          • Orthorexia common in SIBO
            • Healthy eating gone too far – patients instructed to go on too restrictive of a diet
            • Leads to malnutrition, fears of foods, impairment of daily functioning
            • Remind patients they did NOT cause their own SIBO
            • Work on developing peace with food, not fear.
          • Study primarily in Animals
            • Bacteria eat what we don’t digest
              • Too much protein results in negative metabolites, sulfide gas, ammonia
              • Carbs are preferred fuel source for bacteria
                • Bacteria produce butyrate which encourages mucin which maintains the gut integrity
                • When you don’t feed the bacteria, they eat you
                  • Study: fiber rich diet in rats, then put them on a fiber-free diet and the bacteria broke down the mucin layer and started to eat it

Fermented Foods

• Kombucha, Yogurt, Sauerkraut – all have FODMAPs
  • Some people think that by taking complex carbohydrates and fermenting them (break them down) it will help with digestion
  • If easier to digest, will small bowel bacteria be able to get to foods they normally couldn’t because they were too complex before? Yes.
  • Not all microbes added to ferment are probiotic (associated with good health)

Stress and Gut Microbiome

• Changes in gut microbiome lead to changes in emotional behavior
• Being sick is stressful – is your diet causing you stress?
• Serotonin is not regulated by the microbiome directly but it is indirectly

Role of Probiotics

• Probiotics recommended during antibiotics because of better decontamination rate, but more research is needed
  • Reuteri (DSM 17938) probiotic strand shown to dramatically reduce methane and improve bowel movements
    • Treatments not as effective with antibiotics, so worth it to try this particular strain
    • Try for 4 weeks, twice a day with 10⁸ CFU (100 million CFUs) capsule

Conclusions

• Space meals for MMC – 3 to 4 hours is sufficient
• Balance the plate
• Less processed foods, less refined grains, less additives such as emulsifiers
• Remember long term colonic environment – want to feel well but also keep gut microbiome healthy for the long term
• Work to understand the underlying cause beyond diet
  • Work with a trusted team, the more integrated, the better
  • Primary doctor, GI doctor, dietitian, pelvic floor therapist
• Stress management techniques should be included in dietary considerations
• No evidence based diet for SIBO but since a large overlap with IBS, the low FODMAP diet is the most evidence based start for most patients in the SIBO population
• Remember that SIBO requires more than just a diet approach

Q & A

• How do you approach patients who aren’t able to expand their intake of foods, still have multiple food intolerances after SIBO treatment and low FODMAP diet?
  • What are the food intolerances – did the food just cause a gas bubble? If on low FODMAP, have them do a food log and find out what their symptoms were and navigate the arts and science of what is truly bothering them.
• Re: fat rich diets feed methanogens and high protein and fat can lead to excess bacterial metabolites – can you provide a source for further reading on this?
  • Yes, I can and I’ll send it to Justin afterwards. But absolutely, there’s a number of studies.
• How do you approach patients who have difficulty spacing out meals; patients who feel light headed or dizzy even a couple hours after eating?
  • Lightheadedness and hypoglycemia trumps the eating window. Look at what they’re eating, make sure they have fiber and fat with their meals so they stay satisfied. Individuals with both hydrogen and methane, bacteria are getting the carbs so episodic hypoglycemia is observed.
• What about resistant starches like boiled cooled potatoes in SIBO?
  • I don’t encourage a ton of them initially since they are highly fermentable, but when expanding the diet, resistant starches increase butyrate production in some people which is favorable. Bacteria have to be able to break it down and produce the butyrate. Use to rebuild the microbiome after the SIBO is cleared.
• What are your thoughts on juicing in general, vs. as part of fasting in addition to the possible benefits of a juice fast?
  • I don’t do that. Juicing – look at the picture. If patient has severe gastroparesis, we may incorporate some juices as needed but often what happens is that people are making juices or smoothies with 7 cups of spinach, 3 bananas – if its more than you would eat on a plate, it’s too much.
• For patients with chronic SIBO, what is your approach to diet since they may be more restricted?
  • I’m your poster child. I am not on a very restrictive diet. I’m like a tortoise, put my head out and eat a bunch of stuff, then go back to low FODMAP. Bacteria change regularly so a little bit of trusting your gut, expand the diet as you can and go back when you can’t. Chronic SIBO is usually with methane in practice, and the most important thing is keep the bowels moving.

 

For some reason, Kate’s talk was just what I needed to realize within myself that I needed to make changes to my lifestyle and diet. I think a lot of us are in this mindset of restriction, and not feeding the bacteria, but that really isn’t what the diet is intended for (at least not in my opinion). You won’t become cured by following any diet, no matter how restrictive (again, my opinion–also not taking Elemental Diet into account). The diet is meant to help the patient get control of their symptoms, determine which foods are most bothersome, and try to incorporate as much variety as possible beyond that. You don’t need to go Keto/LCHF, and on the other hand, no need to go raw vegan either (I’ve seen both meat heavy and fruit/vegetable heavy diets preached in the SIBO Support Group on Facebook). I think the best approach is balance, but I also know that we’re all super different. Maybe Keto or Veganism works super well for one person–neither of those work very well for me. I’m doing much better incorporating a few fruits and some squash. I’m even going to try to reintroduce grains next week. Be patient with yourself, and don’t be afraid to experiment a little to figure out what works for you personally. As Kate said, our microbes change over time, and so do our reactions to food. Maybe a break from fruit was what I needed to be able to digest it better again. Just my two cents!

SIBO Symposium Notes: Methane and Autoimmunity

Hi ya’ll. So some of you may know that I attended the webinar version of the 2017 SIBO Symposium a few weeks back. It was an incredible experience that I can’t even begin to explain the value of. I learned so much, and hope to share with you a bit of what I learned. I’m re-listening to the recordings (which are only available to those who paid the registration fees, or pay the continuing education fees which are higher than what I paid to register)–and I cannot stress this enough, but if you have SIBO and want to learn more about your condition, pay the fees and go to the Symposium! It’s open to the public, you don’t have to be any sort of practitioner to attend. So keep that in mind when the next SIBO talk comes up, it’s well worth it. So I’m trying to take some detailed notes to share with those who missed out. I’ll try to answer any clarity questions if you have them, but I think I was pretty good about writing in the context of things. Anyway, the following are my notes from Dr. Pimentel’s  presentation on Methane and Autoimmunity. The subject is near and dear to my heart, as I am a Methane producer. I have not been tested for the autoimmunity issue, but I am hoping to get that done soon. Without further ado, notes below….

Methane and Autoimmunity

• Food poisoning is really important and is increasing depending on your lifestyle/what you do
• Lawsuits (expert witness) on whether food poisoning caused someone’s Irritable Bowel Syndrome – have to prove beyond a reasonable doubt that IBS was caused by SIBO
• Burden moving to food production to not cut corners since it can result in IBS

2017 (present time)

• A lot has changed
• Metanalysis in 2015 about food poisoning causing IBS – Mayo Clinic did most comprehensive review in history and at the right time.
• Food poisoning causes IBS. Case closed. No controversy.
• There is no longer much controversy about stress NOT causing IBS.
• Now that we know the cause, we can figure out the solution and study it more closely.
• Risk factors: severity of food poisoning predicts whether you will get IBS. Diarreah for a week is more likely to result in IBS, women are more likely to develop IBS (2 to 1 odds).
• Women also more susceptible to autoimmune issues (but we don’t know why).
• If so sick you needed antibiotics for food poisoning, you are more than likely to get it (not because of antibiotics but severity of sickness)
• You can’t assess anxiety 3 days prior to food poisoning since you don’t know you’re going to get food poisoning.

How much IBS is caused by food poisoning?

• What proportion are SIBO?
• Ex: someone who has had IBS-D for 20 years, the first 2 days could have been caused by food poisoning, but you don’t remember the food poisoning, you just remember the constant D.
• 17% of patients remember exactly the event that started the IBS. (Food poisoning, blood in stool)
• We know what CDC says about how much E. Coli, Salmonella etc. is out there, and we know that IBS is caused by food poisoning, we know a certain % of people get IBS, we know a certain number of people will go in remission after a food poisoning event, and then get IBS at a later time (activated) – created a mathematical model off of this
  • Put 300 million people into the US today, in proper age and gender, nobody with IBS and took CDC data and plopped on top (food poisoning now occurring) – 9.1% of the entire US population would go on to develop IBS based on what we know.
  • We know based on this that food poisoning is the cause of at least 2/3 of cases of IBS
  • Not just the minority of IBS
• Take notion that food poisoning causes IBS (we have seen in animals before us, but using parasites. Since we don’t have a lot of parasites in the US we aren’t looking at that as closely)
  • Campy (parasite) is the most effective (provocative) parasite for causing IBS (15% of people with Campy go on to get IBS) – hard to use in the lab since you have to be extra careful when dosing to rats. Wait until 3 months after to assess the rats. Campy has come and gone, rat is now immune to it and kicked it out. 3 months later, 27% now have SIBO (QPCR used instead of breath testing in rats).

Mechanism for how this happens

• Not only did they get SIBO, bowel habits have changed (IBS), increased rectal lymphocytes
  • Rat model seems to mirror what we see in people so it is valid.
• Pimentel ordered large book on Toxins
  • Is there a toxin common to all these different bugs?
    • Yes, it’s cytolethal distending toxin (CdtB)
    • Maybe this is what was causing the delayed motility
  • Did a study where they deleted the toxin from Campylobacter (Campy) and so it’s only producing half the toxin (deactivated) – waited 3 months, did experiment over again, if you don’t have the toxin, you don’t develop the phenotype of IBS or SIBO
  • If you are traveling in a place where you know you may get food poisoning, take Rifaximin with each meal and you won’t get IBS
    • Best result was the rat that took the Rifaximin the day before, the day of the Campy infection, and the day after. Now GI doctors are taking this when they travel. Not FDA approved for that use but the most proactive. Kill it before it does anything.
  • MMC is what cleans the SI when you aren’t eating – repetitive wave like a broom sweeping your gut. Prevents food from covering villi
    • Wave is deficient in people with IBS/SIBO. How is the wave destroyed?
    • Cells that make this wave – looked at rats with Campy and have SIBO, campy and no SIBO, etc. and counted the cells – can predict who will get overgrowth based on the number of cells that people had
    • Theorized that CDTB was killing the cells. Cells can multiply and grow back and multiply. They have plasticity, they are able to recover. So why aren’t they coming back?
    • Antibody to the CDTB, give it to the rats 4 days after Campy and no Campy. The Antibody goes to the nerves on both groups because of Molecular Mimicry. CDTB protein is similar to the protein of the nerves in the gut, and you develop an autoimmunity to the nerves in the gut. CDTB is taking advantage of you to attack you, and then you are left with antibody that attacks you.
    • The protein is called Vinculin – if you don’t have Vinculin, you don’t have the nervous system of the gut
    • Gave rats just the toxin instead of Campy, huge spike of the antibodies
    • The higher the antibodies, the lower the vinculin, and the more severe the overgrowth

Blood Test

• Wanted a test that said you have IBS and nothing else
• Took 2375 IBS-D patients, 142 subjects with IBD including Crohn’s (73) and Ulcerative Colitis (69), 121 patients with Celiac and 43 healthy subjects
• Set the test high for 2.8 (greater than 90% confidence that you have the disease) Anti-CdtB
  • Don’t want false negatives or false postiives
  • 98% chance that if positive, you have IBS
  • Also means that food poisoning started your illness
  • Some don’t have SIBO
• Some GI doctors have the mindset that they know how to diagnose IBS, they don’t need a test for it
  • Pimentel’s response is that well, if you knew you had IBS, wouldn’t you want to know if it was food poisoning that caused it? Most do.
  • If you have high antibodies, know that if you get food poisoning again, you will become harder to treat? Yes, they would want the test.
  • See patient from Boston – went to India for business and got food poisoning 15 years ago, he’s doing well now after Rifaximin. Asked for blood test, Dr. Pimentel says there’s no need to do it, but agreed and test was positive. Patient was relieved that the test was positive because it gave him closure.
• Separates the IBS-D from the IBS-C (not as major a contributor for IBS-C and Methane)

IBS-C and Methane

• Antibodies are really good for IBS-D and M, but not C (Methane)
• Looking at Methane as the cause of C, and it isn’t necessarily SIBO.
  • Referred to C/ methane as Bloom.
• Pathophysiology of C is different, and Methane is important.
• If you have Methane, you have Constipation (direct correlation)
• Methanogens have been around for a very long time
• Study that analyzed the correlation in Brazil between how close you lived to a sanitation landfill and whether you lived in a slum or not a slum (landfill is where methanogens proliferate)
  • Closer you lived to a landfill, the more methanogens on your breath and in your stool
  • Bugs are colonizing you because of your proximity and contamination in your environment
  • Familial connection as well
  • We think we need Archaea but quantity depends where you live and your environment
    • Sub-Saharan Africa, 75% of adults have Methane and most people are perfectly healthy
    • Methane slows the gut down – in Sub-Saharan Africa, it’s harder to get nutrition from your food because accessible nutrients are harder to obtain.
    • People from those regions of Africa that move to other countries with more abundant food sources, you develop obesity. Methane producers can harvest more energy from the same quantity of food.
    • The higher M.Smithii in stool, the higher in the breath. Higher correlates to harder stool.
    • Methane doesn’t paralyze the gut, but it holds things.
  • As you age, the more likely you are to get Methane (especially in people 95+)

How are we going to treat this?

• Looked at M. Smithii in test tubes with the combination of Rifaximin and Neomycin (more than 80% likely to make the patient better and eradicate Methane)
  • Does not eliminate all methanogens, which is a good thing
• Did a double blind control trial
  • 1 group got Neomycin and Placebo, the other group got Neomycin and Rifaximin. At the end of the treatment, severity of constipation was lower if you got both drugs, bloating was lower.
  • Problem with Neomycin and Rifaximin, the results do not last. Methanogens come back more quickly and more resilient. Can’t give the antibiotics for 2 weeks every month. It is not a “be all, end all”. Rarely has a long effect and if it doesn’t last, we have to think outside the box.
  • Try to get the Methane less than 3. Best results observed at that level.
• If you have Methane on your breath test, you are hyperglycemic more than if you don’t have Methane. Methane changes how your body reacts to glucose.
• Took patients with BMI over 30 (obese) – if your Methane is positive, you have almost 50 more pounds over other obese patients.
  • Can Methane be predictive of obesity?
    • Yes, but you have to have both Methane and Hydrogen.
  • After Bariatric surgery, looked at results 6 months later
    • Those that had Methane on their breath lost less weight
      • Methane also predicted that the results of bariatric surgery are not very significant
    • Methane is not overgrowth, it’s a bloom, blossoming, outgrowing things
      • We don’t know how much is in the small bowel vs. the colon, what we’re seeing is that the colon methane bugs are proportional to the amount of methane on the breath test
      • Methane is high to begin with and lactulose doesn’t make it go up

Statins

• Aspergillus is a fungus that lives in wet areas (discovered in Japan), and rice tends to accumulate it when it gets moldy.
  • Aspergillus produces Lovastatin – not intended to lower your cholesterol, it was intended to effect its environment and effect the bugs around it to protect itself.
  • M. Smithii uses an enzyme called F420 and takes the Hydrogen from the syntroph, a syntroph is a bug that’s helping you out, and it’s producing Hydrogen which then through F420 as part of the pathway that makes methane. Lovastatin blocks this enzyme, and you don’t get Methane. And because you don’t get Methane, Hydrogen goes up. When Hydrogen goes up, the bugs that make Hydrogen don’t like all that Hydrogen and it makes them sick, so they go down. So if you block this, you get Methane going down and Hydrogen going down because the Hydrogen intoxicates the Hydrogen organisms.
  • Methane production drops really quickly, within days. And because you aren’t producing Methane, Hydrogen starts to rise, but it pickles the bugs and they don’t like all the Hydrogen. Hydrogen bugs loves the Methane because it keeps them from intoxicating themselves.
  • Lovastatin fits perfectly in the F420 pocket and blocks this enzyme.
  • Did a study using Syn-010 (Lovastatin in a release form)
    • The Statins on the market are designed to lower your cholesterol, so they get the statin in your bloodstream
    • We want the Statins to act in the gut, not the bloodstream. Syn-010 keeps it almost all in the gut, not the bloodsteam
    • The lower the methane dropped as a result of treatment, the less constipated patients were, and essentially the drug removed the dependence on laxatives.

Is Methane a Friend or Foe?

• Bugs are good and bad, don’t want to annihilate them
• People living next to the landfill are healthier in that they can remove more nutrients from less food, so in their situation it is advantageous to have the methane
• Too much on the Methane side you’re getting constipation, too much on the Hydrogen Sulfide side you’re getting diarrhea, and Methane is a separator for constipation.

Conclusions

• SIBO is seen in at least 60% of patients with IBS
• M. Smithii causes the constipation
• Breath test strategizes who should get which drugs
• Accute gastroenteritis causes IBS, maybe not all IBS but 2/3 of IBS.
• C. Diff gastroenteritis causes SIBO because of the CdtB in the rat model through this autoimmunity to Vinculin
• You can diagnose IBS, therefore IBS is a disease, not a syndrome (has a biomarker)
• Blood testing can save money since you don’t have to do the colonoscopies
  • Higher the antibody, the greater the SIBO
    • Greater travel risk because of food poisoning, so strongly recommended to give Rifaximin with each meal during length of travel since subsequent food poisoning incidents can make the patient sicker and harder to treat
  • Having these antibodies, having IBS makes you 2 to 3 times more likely to get food poisoning again
  • Patient going to Costa Rica, Dr. Pimentel prescribed half a pill of Rifaximin to be taken with each meal (again, Rifaximin is not approved for that) while you are there. She was there for 2 weeks, with 18 friends. 17 people on that bus ended up getting diarrhea. The only person that didn’t was the IBS patient.

Q & A

• Thoughts on the SIBO Cyrex Antibody test?
  • I have not used it, I’ve been using the Commonwealth one that’s available through the 15^th. It’s a different format so I haven’t been following it over time since I haven’t done it.
• Can Intermittent Fasting help with SIBO?
  • Like I said in the morning, if you don’t eat, SIBO is less. Cedars diet talks about not eating every hour. Eat, and then fast. We are feast and famine organisms. Why have a cleaning wave that only works when we aren’t eating if we’re supposed to be eating all the time? 4 to 5 hours between meals works. It helps with whatever few cleaning waves they have.
• Besides taking Rifaximin while travelling, what can we do to reduce the chances of getting food poisoning?
  • Basic habits of travel – don’t eat salad, when you go to the buffet, eat directly above the burner, not the sides where it isn’t as hot (that’s where the E. Coli is sitting). Hot food, bottled food and drink are good. Some places refill empty plastic bottles and use a hot gun to make it look sealed again so be careful.
• Just to reiterate in your opinion whether herbs or Rifaximin are used to kill bacteria, you believe patients should not eat a restricted diet while on these?
  • Are you talking about the herbs from the Hopkins study? I don’t use it much, but folks from this college (NUNM) have told me that the amount that’s in there may be a little harmful, so I haven’t been using it. Even though it is natural, natural products can be harmful too.
• Mayo Clinic published a study saying that the first antibiotic you should use for SIBO is Cipro. What are your thoughts?
  • Cipro causes tendon ruptures, Cipro causes an apocalypse on the colon flora, it’s associated with microbial resistance. We studied Cipro and absolutely it works, and it’s cheaper, but you use Cipro once and it works 75% of the time it will never work again because of resistance, so we are looking for things less resistant than Cipro.
• If the test (IBSChek) is so accurate, how come it isn’t available?
  • It is available through the 15^th and Quest has a slightly different version of the test, Cyrex has some version and I have no idea how it works or what it does or what it’s testing exactly. The Commonwealth one will be available in weeks so not to worry.
• Since you have seen a correlation between Methane and Obesity, do you see weight loss after treating the patient?
  • That’s exactly what we’re studying right now, in an animal model if getting rid of methane causes weight loss. When we gave methanogens to rats, and then fed them a high fat diet, if you have methane and you’re on a high fat diet you’re in big trouble, because those two are working together so well. These rats gained an immense amount of weight. Then we dissected the rats and looked for the methane. The thinnest rat in the entire study was emaciated and had zero methane bugs in the gut, didn’t gain weight and was on a high fat diet. The highest weight rat is the one that had methane everywhere and was on high fat.
• In your experience, besides prokinetics, is there anything you can do to increase motility? Supplements?
  • Prokinetics are being discussed later so I’ll leave that for them to answer. You can’t fix this motility very easily especially if anti-Vinculin is really high. We did plasmapheresis in 3 very distended patients with pseudo obstruction with the highest anti-Vinulin rates we’ve ever seen and they got better, but it was for about a month. We can’t keep a catheter in a patient’s neck long term. We thought it would last longer but it didn’t.
• Do you think colonic irrigation helps or harms the bugs in the gut?
  • What I know is there have never been any studies before and after colonic irrigation, so I don’t know the answer to that. New way of thinking that the holy grail of treating microbial disease is Fecal Transplant, but what we don’t know we don’t know, and what we do know, we do know. Case showed someone that had C. Diff and got FMT, C. Diff is gone. Donor had methane though, and person who got the FMT is now suffering with immense constipation. Might start screening for methane with FMT based on that case – point is knowing is more important than not knowing.
• What dose of Rifaximin is being used for food poisoning?
  • Again, it’s not FDA approved but we use half a pill with every meal. I do it when I travel and recommend to the patients when they travel. (550mg)
• What % of the 2/3 patients with chronic SIBO are methane dominant?
  • Constipation constitutes about a third of IBS, and 80% of them have methane. 95% of people with methane are constipated.
• Can the autoimmune process involving Vinculin lead to other autoimmune conditions such as Hasimoto’s, Multiple Sclerosis, etc.
  • The only link we’ve found has been with Scleroderma, they have some of the highest Vinculin antibodies, that’s the only thing we’ve found so far for autoimmune links but we haven’t studied all these conditions yet. Remember that autoimmune conditions are more common in women such as Rheumatoid Arthritis, immune system may be slightly different in women but we don’t know why.
• Can you speak to which labs to use to run the antibody and breath tests?
  • There’s a number of labs you can use, you can go to a doctor with a QuinTron machine, which is what we have, to do the breath test. For the antibody test, Cyrex does it, Quest does it and Commonwealth’s will be with someone else soon.
• You said that Rifaximin and Neomycin have a high relapse rate, which is what we see as well. What are the next steps in treatment?
  • We do use Allicin a little, it works very well for methane temporarily. We are hopeful for this lovastatin drug and we think it’s going to be the Holy Grail for methane, at least for now.
• Is lovastatin a standard prescribeable medication?
  • The answer is no, the phase 3 trial is scheduled to start in September, as I’ve been told. Trial is designed, FDA has approved it.
• Do you have any experience with the herbal Atrantil for methane?
  • I have heard from at least 2 people at this meeting that they have found Atrantil very effective for blocking methane production. I haven’t personally used it so I don’t know the answer to that, but I know Allison Siebecker has and she likes it. It depends who you talk to.
• How does finding a positive on the IBSChek test change how you would treat the patient?
  • The higher the antibody may predict lack of response to Rifaximin is what we’re seeing, again not published but what we’ve seen in the clinic. It predicts likelihood of getting food poisoning, so have them be more cautious during travel. Also gives them closure for how they got SIBO.
• What is the latest research comparing the small and large bowel?
  • Only 1 study in terms of deep sequencing, and what we know is that the colon of human bugs is more similar to the colon and stool of mouse than your own small bowel. You can’t look at anything that’s going on in the stool and predict anything about what’s going on in the small bowel.
• Would you follow up the anti-vinculin test with a breath test or just treat with Rifaximin?
  • That’s a good question. If you have constipation, I’m going to do a methane breath test for sure. If you’re just D or mixed, it’s up to you.
• How do you get insurance coverage for preventative use of Rifaximin?
  • You don’t. It’s not approved for that, so you can’t get insurance to cover it.
• Which type of SIBO, methane vs. hydrogen is easier to treat?
  • Hydrogen is easier to treat and stays away longer, usually about 6 months, because it’s due to this autoimmune response. We’re better able to handle it. Methane, even though we have cool data, it keeps coming back and we’re studying a bit more. Our clinics are filling up with methane patients because they’re suffering and it keeps coming back and we don’t have a good answer for methane yet. This Syn-010 trial could be filled up in a few weeks because there’s so many people. Rifaximin is working for the hydrogen side so we’re getting more and more methane.
• Is it possible for C. Diff or any other intestinal inflammation to be the underlying cause of SIBO?
  • C. Diff has CdtB, C. Diff leads to IBS, same as Campy and the others.
• Using Lovastatin, how much of a methane reduction occurred on breath tests?
  • Some patients, 0 within a few days. Others took a little longer. Because there was different doses in the trial. The problem with methane is it varies by diet. If you don’t eat the night before, you won’t have any methane. If you fight the weeds off enough for long enough and the grass has grown in, there won’t be room for the weeds. We might be able to train the bowel to keep the methanogens at a low level. We don’t know for sure yet.
• Do you use anti-CdtB and anti-vinculin antibody test serially to track progression of autoimmunity? Do you see it decline over time? How often do you retest?
  • We are starting to use it, in some patients especially when we’re trying more toxic therapies for some very sick patients. I’m not going to get into it.
• Are parasites (Giardia, Amoeba, etc) included in any of these analyses?
  • Yes, if you look at the Mayo Clinic website, there’s a section on parasites. The problem with parasites are most of the massive amounts of studies so far have been on bacteria and post infectious SIBO, not parasites.
• MY QUESTION ( I was super giddy when he answered it): For patients with methane, is a lower fat diet more recommended (not taking weight loss or weight gain into consideration)?
  • So, this is early conceptual stuff, but methanogens make methane from hydrogen, ammonia, acid. Anything with a hydrogen source helps them make methane. So if you’re drinking lemon juice, or apple cider vinegar all day and every day, and you’re a methane producer, guess what, you’re producing more methane because the acid is going to fuel the methane production. So I think there’s going to be a SIBO diet for the SIBO and a methane diet for the methane. But we haven’t worked that out yet. Low acid diet may be beneficial for someone with methane, you can quote me on that but don’t start forming a diet around it without more science.
• How does Saccharomyces Boulardii fit into IBS treatment or prevention?
  • I don’t know if there’s enough information on IBS and Saccharomyces Boulardii, I know there’s a correlation between C. Diff prevention and Saccharomyces Boulardii, maybe for even Pouchitis, not a lot of data on IBS.
• Is CdtB and vinculin antibody testing valid for IBS-C? And how do you interpret discordant results (e.g. negative CdtB, positive vinculin)?
  • Doesn’t work in C. In terms of how to interpret, the antibodies for CdtB go away after awhile because it’s gone. CdtB comes first, then vinculin comes later. CdtB can drop off because you haven’t had food poisoning in 5 years, but vinculin stays.
• Do you recommend standard testing for SIBO in obesity or treatment with surgery?
  • We’re still seeing if methane reduction results in weight loss. We’re studying in the animal models first before going to humans.
• Does ethnicity play into diagnosing if methane is pathogenic?
  • So what we see is that the highest percent of methane positive are in women of African American descent and tend to be very constipated also. It may be ethnic or culture or parents or a number of other factors. Obesity is higher among African American populations in the United States as well. In Japan, they are interested in Lovastatin because it came from Japan, and they don’t have methane in Japan. Prevalence of methane in Japan is very low.
• Can IBS-D facilitate a bloom of methanogens causing mixed IBS?
  • When you aren’t methane, it’s hard to make you a methane producer. If you have methane we can make you hydrogen only by using antibiotics. But it doesn’t go the other way.
• What are your thoughts on CBD as a treatment for SIBO?
  • That’s a great question but I don’t know the answer to that.

END

Hope that you learned some cool stuff from this, I know I did!

 

SIBO-Friendly Toasted Coconut Cake

Hi all. Thought I’d take a break from ramblings on myself and my journey and share a delicious cake recipe with you guys on the day of my partner’s birthday (and we are actually having this cake tonight in celebration!). While many of us follow a variety of diets, I think with a few modifications, this could work for most of the various SIBO diet plans. Full disclosure: this is my first SIBO friendly baking experiment. Without further ado, the recipe and modification suggestions are below. Enjoy 🙂

Ingredients:

• 3 eggs
• 1/3 cup finely ground, blanched almond flour
• 1/3 cup toasted unsweetened shredded coconut (I used untoasted and toasted it in a pan over the stove)
• 2 TB melted butter (if you have to avoid butter, I think that melted coconut oil would work nicely)
• 1 tsp vanilla
• 1 tsp baking powder
• 1/4 cup lakanto golden sweetener (purchase here: Amazon) – if doing SIBO Specific Diet or SCD, a few TB of honey should work. For Low FODMAP, maple syrup or plain sugar should also work.

Directions: Separate the eggs, reserving the yolks in a separate bowl, and beat the whites until stiff. To the yolks, add the melted butter, vanilla, sweetener of choice, shredded coconut, almond flour, and baking powder, and mix well. Once mixed, add in a generous spoonful of the stiff whites and incorporate it gently. Then add the yolk mixture into the whites, folding it gently. Pour the batter into a parchment lined cake tin (I used a 9 inch round). Bake at 350 degrees for about 30 minutes.

For the Coconut Vanilla “Buttercream”:

• 3 TB heavy whipping cream (you could probably use coconut cream here)
• 6 oz mascarpone (I used Whole Foods brand for its natural sweetness – you could sub cream cheese or omit this all together and just make whipped cream)
• 1 tsp vanilla
• 1 TB lakanto (or other sweetener of choice)

Directions: Add all ingredients in a bowl. Beat thoroughly until thick and spreadable (careful not to over-beat). Frost your coconut cake, or enjoy on a spoon – I won’t judge! 😉

Optional add-ins (full disclosure, these are still untested):

• 1/4 cup of blueberries or chocolate chips may be good added to the batter.
• 1 – 2 TB of unsweetened cocoa powder in the buttercream
• Serve with sliced strawberries, bananas, or pineapple

Recipe notes: This recipe (including the buttercream) yields one 9 inch round cake. I would double it to make a 2 layer cake. I might even triple it to make a 9 by 13 if desired.

Let me know what ya’ll think!

Just Kidding, SIBO is Back!

Hi all,

I’ve been really lagging on updating my blog and writing this post. I meant to update sooner, but I think I was too busy feeling sorry for myself to sit down and actually write this. As fate would have it, the same day I wrote the post about being in remission (which was also the day I had spoken with my doctor), my symptoms came rushing back that evening after dinner. So I was symptom-free for about 4 days (while sticking to the Fast Tract Diet and Keto/lowish FODMAP) just to have it all go back to the way it was. I emailed my doctor that night and waited….. and kept waiting…. and waited some more… until 3 days had passed. I then called and left a message requesting a call back. I still heard nothing for another day, and then it was the weekend, so I called back again on Monday. I hate to be that patient, the annoying one that won’t go away, but at the same time I was like “OK, we probably got the bacteria numbers down at least, so I wanna keep treating if we aren’t going to retest”. I was feeling pretty anxious which I’m sure didn’t help matters. The Monday call also went to voicemail, so I left another message.

The same evening, I finally got the call back, but I had missed it thanks to the awesome cell service at my new apartment (UGH!). Finally, we got in touch the next morning, and my Dr. advised that I should do another course of Rifaximin and Neomycin. I went and filled the script that weekend, and I’ve been on the antibiotics (round 2) for about 11 days now. It’s going pretty much the same as last time, except less D and more headaches (just nuisance headaches, not severe). So you might say I’m tolerating it slightly better than last time, but I wish I could go back in time just as a reference to be sure. I’ve already made up my mind that I won’t be doing these antibiotics again. The only exception to that would be if my Dr. finally does agree to retesting me, and if we see that my numbers are almost normalized. I just think repeating the antibiotics time and time again will cause some level of resistance (I know Rifaximin is supposed to be good about not creating antibiotic resistant bacteria, but I am leery about that).

I’ll follow up with my doctor again after this round of treatment and I plan on insisting for another breath test, and also getting the IBSChek test finally done to figure out if I have the autoimmune type of SIBO caused by food poisoning. I wasn’t sure it was necessary before, but after speaking with a few others and participating online in the SIBO Symposium this past weekend (side note to any of my SIBO readers: you should absolutely 100% pay to participate next year or on future SIBO talks! I learned so so much about this condition and was able to ask Dr. Pimentel a question! I can’t stress enough how helpful the Symposium was for me), I think it could provide a lot of valuable information as well as potentially provide me some closure to know what my root cause is.

On a somewhat related note, I will be writing a blog post on some SIBO Symposium highlights once the recordings are available to me in a few weeks. I missed a few of the talks unfortunately, but I’ll be watching and re-watching, and take some notes for you all to share. I am not a doctor so obviously this will be written from a fellow patient perspective, but hopefully you all can find it helpful. The presentation given by the FODMAP queen, Kate Scarlata, especially stood out to me. As someone with a past of eating restriction, I am always on the lookout for my past behaviors controlling my present mindset. I’ve been concerned lately that the need to stick to a Keto diet is starting to make me fear carbohydrates in an unhealthy way. Yes, Keto and Fast Tract have been helping me, but I haven’t at all experimented yet with adding more carbs (so no longer at a ketogenic level of ~20 net carbs per day). I thought I was doing myself a favor by going to Keto levels because I’m also wary of being on the brink of ketosis (such as eating 50 net carbs) and feeling terrible because my body wouldn’t know whether to use glucose for energy or ketones. I would like to get over that apprehension though, and feel like I can safely eat some carbohydrates without being too symptomatic.

Kate really stressed during her presentation that none of these various SIBO diets have been studied and proven to help people with SIBO. The most science-based of the diets is the Low FODMAP diet, which has been proven to help people with IBS (not SIBO), so this is the diet she most recommends and uses with clients. She also stressed the importance of a short elimination period, figure out your FODMAP triggers, and modify the low FODMAP diet to fit your needs! The other thing that was stressed is that these diets won’t cure SIBO, they are purely for managing your symptoms. I think so many of us get extremely stressed about the diet, myself included, thinking if we slip up occasionally that we’re feeding the bacteria and cannot heal and recover. I’m now realizing that what we do 80-90% of the time should be more than sufficient! It’s OK to go out to eat for a special occasion and not worry too much — obviously you have to accept that you may have some discomfort from eating off plan but for a lot of us, I think that’s more healthy than the alternative of deny, deny, deny, and then (for some of us) binge. Now, I’m saying enough is enough. I’m going to start working with a dietitian who can help with getting over the fear of carbohydrates and guide me to eat to control my symptoms. I hope to anyone reading this that feels the same way has the courage to find a practitioner that can help them, too!

In Remission from SIBO… for now

I hesitate to write this post because I don’t want to be eating my words in a day or two if I get a flare and come to the harsh realization that it’s all coming back. Now I think I know why there’s so few success stories for SIBO. Even the people who get better are too afraid to “jinx” it. We all know we’re susceptible to getting it again, so how do you move on and not allow your life to be ruined, to be paralyzed in fear of eating sugar again or that slice of pizza calling to you from the box in the kitchen. It’s been 4 days since I stopped treatment and I haven’t had any symptoms.

I had my follow up appointment with my doctor today (he does phone appointments, so I took advantage of that). I told him how I felt on the antibiotics, and that I’ve been symptom free since the course ended a few days prior. He told me that usually 6 weeks after the treatment is over, people are feeling their best (if it really did work) since the inflammation finally reduces. I was going to ask about retesting, but he addressed that head-on. He didn’t want us to retest since I’m feeling better, which is the goal anyway. He told me the reasoning is, if it isn’t gone, then we’d do another round, which we would do eventually if my symptoms return anyway. I was then instructed to call him if I feel like I’m relapsing, we can test then and treat it again. If I feel OK, I should follow up with him in 6 weeks (late June, early July). Keep taking the Resolor, and actually increase the dose to 1mg (I’m taking 0.5mg right now to titrate up to the full dose–if I experience abdominal cramping, I should continue with 0.5mg). He also reasoned that since I am feeling better, even if there’s still some overgrowth, the prokinetic (Resolor) should help take care of the rest of it. I’ll keep you SIBO warriors posted on how this all goes.  Keep your fingers crossed for me.

In other news, I’m moving this week so I’m living my life out of boxes currently. It’s not my favorite time. Anyone with food sensitivities or SIBO knows that it’s a pain in the ass to move when you have to pack up all your kitchen shit, and yet still cook at home without your normal tools available. I just thank the heavens that I don’t seem to have histamine intolerance, so I was able to meal prep on the weekend as per my usual, and then pack up the majority of my pots, pans, utensils, small appliances, etc. I’m still able to cook up some eggs for breakfast and left out my nonstick pan, so I can also saute veggies. I prepped some very easy meals for this week (taco bowls with cauli-rice, and turkey egg roll in a bowl) so I should be covered. Part of the logistics is of course making sure I’m able to locate my essential cooking utensils quickly once the boxes are at the new place since we plan to cook there from the first day. I haven’t yet ventured into the world of dining out with a million food intolerances and I’m not quite ready to start just yet, especially with SIBO remission as a real possibility. I’m not sure when the fear goes away–fear of food, fear of relapse, and even fear of actually being better and not knowing how long it will last–but I’ll let you guys know.

Actually Healing from SIBO?!

I hate to say it out of fear that it isn’t true, but I think I’m responding to the antibiotics very well. My only concerns are that I haven’t really felt what I would consider a “die-off” reaction, and I haven’t seen any biofilms being passed (but I don’t know that it’s necessary to pass biofilms in your stool to kill the bacteria). Here are my main observations over the last 13 days (tomorrow is the last day of the antibiotics – eeek!):

1. The bacteria seem to really really love the guar gum. I’m reacting to it within 30 minutes of taking it. The reaction has lessened as the antibiotics course has progressed, though. For anyone looking to supplement their antibiotics with guar partially hydrolyzed guar gum, this is the one I have been using: here
2. The first day or two, my BMs were excellent. I am normally constipated and only go about 3-4 times a week MAX (also using lots of magnesium citrate supplementation) After a few days of this, the D started. I’m talking lots of D. Probably between 6 to 8 times a day. Luckily, it wasn’t accompanied by any stomach pains or urgency, I just knew that I needed to go based on a fullness feeling and desire to pass gas. I actually didn’t mind this symptom too much because the D wasn’t painful like it was on the Elemental Diet. I also felt better knowing my intestines were being cleansed regularly.
3. OMG, how did all that gas fit inside my body? Days 4 through 8 were the worst gas-wise. Even days 9 and 10 I had some gas, but probably my normal amount. I’m talking the kind of gas where you feel like you’re pregnant because the gas baby keeps kicking you and shifting. Since I was having D (see above), I couldn’t pass it freely when it did finally feel passable. So I’d run to the toilet, pass a little (along with more D), and literally feel no better because there was just SO MUCH GAS! I don’t think I looked that distended, but I never had much distention with my bloating anyways, more just that fullness-feeling. It was very uncomfortable and distracting, and my work productivity suffered because of it.
4. Mild headaches, sometimes upon waking and sometimes not until later in the afternoon. Usually my headaches are related to hunger, but these were not. They were a slight nuisance but they would just come and go. I didn’t take any pain relievers for them, honestly because Ibuprofen usually does nothing for me, and my own paranoia about introducing other drugs during the antibiotics course. I don’t want to screw this thing up.
5. All my symptoms are lessening in severity as the course of antibiotics progresses. The gas is still present, so I don’t think I’ve fully beat SIBO, but I do think I’ve made progress. The volume of gas definitely feels like it could be less. And the fact that I’m not constipated makes me hopeful that my methane may be gone, which is supposed to be the harder type to beat. That may return after the antibiotics though, since diarrhea is a side effect of Neomycin, so stay tuned. I didn’t have much methane to begin with which does make me hopeful about that.

Next steps for me are finishing this course of antibiotics, and immediately following it with Resotran (Resolor), a prokinetic drug that my Doctor prescribed. Hopefully I tolerate it well. Then just 3 days after finishing the antibiotics, I will have my follow-up appointment with my Doctor to discuss any improvements and game plan on whether to keep treating or re-test. I think I am going to push for a retest, even if my symptoms return more fully after the antibiotics. I really need some confirmation that all my efforts are working, so I want to know where I’m at. But then again, I would be super devastated if my numbers haven’t improved or have even worsened. Trying to stay positive. Anyway, here’s to hoping I’m on the path to slaying the SIBO dragon.