Have you recently been diagnosed with SIBO or know someone who has? I have compiled a list of my top 8 pieces of advice that I wish someone had told me when I was first diagnosed. Please enjoy and share with others who are just beginning their road to recovery.
- It’s a marathon, not a sprint. I am a planner. I can’t help it. As I was healing from SIBO, I kept wanting to know when I would be “fully recovered” so that I could get on with my life and stop feeling handicapped. I wanted to know how much longer I had to continue spending ridiculous amounts of money on healthcare expenses. But no doctor seemed to be able to tell me that. The truth is that only time will tell how long it will take to get you back to feeling healthy again (or maybe for the first time). If you are a planner like me, it may be helpful to think of your healing journey as a marathon, not a sprint. Try to enjoy life (for me it’s about time with family and friends, yoga classes, walks, and date nights) and appreciate the positive aspects of SIBO (perhaps as a wake up call or a lesson in patience).
- Get ready for change (and withdrawals). Sometimes I wish my diagnosis had been different because making changes is difficult. Especially when it involves food. One of my daily routines before beginning to treat SIBO was rewarding myself with a sweet treat every afternoon. There was a little coffee shop a block from my apartment that carried my favorite brand of gluten-free, vegan treats. I thought that it couldn’t be too bad for me- heck, it was free of gluten, dairy, and eggs (some of my main triggers). But what I didn’t realize was that I was eating a lot of sugar with each of those treats. When I gave up sugar (in all forms- refined, unrefined, & fruit) cold turkey, I was a MESS for about three weeks. I mean a REAL MESS- I was a miserable person to be around. It is important to stay committed, because it gets easier the longer you stay away from it. And when I began to allow myself to have a treat here and there again, it was easier for me to recognize when I was starting to spiral into my “too many treats” mode again. Another tip for staying committed is to prepare- remove all sweets from the house and ask family members and friends to help support you by avoiding bringing temptations around you.
- Only restrict your diet as much as absolutely necessary. Dietary restrictions pose the risk of creating nutrient deficiencies, especially if they are extreme or long-term. I would consider many of the diets recommended for SIBO to be highly restrictive and pose a risk for creating these issues. Additionally, they can be highly problematic for individuals with a history of eating disorders or disordered eating. My recommendation- consult with a SIBO-knowledgeable physician, nutritionist, or health coach before implementing any dietary restrictions. And if your diet ever gets to the point where you stop enjoying food or you feel like you need to quit your job to be able to cook for yourself, you may want to rethink whether you REALLY need to be that restrictive. Don’t get me wrong- dietary changes can be very helpful and often necessary with SIBO, but you also need to be able to live your life.
- It will cost lots of money. Healthy food is expensive. My food budget nearly doubled when I began eating for SIBO and I had already been eating pretty healthfully before. But I was unable to enjoy as many meals provided by other people (such as at events). Plus, I couldn’t buy cost savers such as beans and rice or subsidized foods such as milk and corn. And when you have to choose buying low FODMAP vegetables over buying those that are inexpensive and/or in season, the costs add up. And then there are the health care costs…my health expenditures have amounted to over $9,000 since I began treating SIBO in early 2014 (and that’s with REALLY good insurance that covers alternative health care such as naturopathic and chiropractic visits). I recommend considering expensive testing very carefully- ask your doctor what information it will provide and in what ways (if any) the testing will change the treatment plan. Then, speak with others and see about their success (or lack thereof) with such testing.
- Find your root cause. When I was first diagnosed with SIBO, some of the articles I read made curing it seem easy. Simply take some antibiotics, then a prokinetic, then follow a diet. However, when this didn’t work for me, I thought I was a hard case and became frustrated. But I am seeing over and over again that other people are in a similar scenario. I think that there is a disconnect between how the treatment process is portrayed and reality. I also think that there just isn’t enough knowledge out there right now for how to deal with SIBO in the long-term. However, finding your root cause is a surefire way to truly heal. You may be thinking “well, where do I start?” Start with something, try it, see if it works, and look for patterns. You will slowly start peeling back the layers and getting closer to your root cause. I think it is really helpful to continually ask “why?”. When I realized that I didn’t tolerate kale, I asked why. I then realized that it was because high sulfur foods or supplements caused issues for me. I started searching for why that could possibly be the case since these foods are supposed to be so healthy. I came up with two possible answers: 1) genes and 2) heavy metal toxicity and started treating the one that seemed most plausible/fixable. Only time will tell if I have gotten to the ultimate root cause.
- Don’t believe everything you read. Including this blog post! Find what resonates with you and your body, not just what someone on the internet (or even an expert) says. There are plenty of sources out there that say fiber and water will cure your IBS. For some people, this is true. But for the majority of those with SIBO-induced IBS, fiber will make you feel worse. Just because it is written, does not mean it is true. I am also a bit skeptical of current breath test interpretation for some individuals. Many of the labs interpret a positive lactulose breath test as a certain elevation above baseline within the first 120 minutes, but some physicians disagree with that time frame and believe that the lactulose solution reaches the large intestine sooner. If the later is correct, then there are false positives going around out there. Ask your doctor how they interpret the breath test. If they take your symptoms into consideration in the interpretation, that is probably a good sign (For example, if you have a faster transit, perhaps the solution reaches your large intestine at say 90 minutes. Or if you have slower transit, perhaps it has not even reached your large intestine at 120 minutes).
- (If possible) work with someone who has experienced SIBO firsthand. I found that it can be really difficult for practitioners who have not experienced SIBO firsthand to relate to patients or clients going through the struggle. It is a condition that goes against so many of the things that medical doctors, naturopathic doctors, and even nutritionists learn in school. I could imagine how someone with SIBO would seem like a crazy person to a doctor who has not actually been in the scenario and experienced how frustrating and difficult it can be. They may think- how on earth could a person react to fruits and vegetables!! These foods are supposed to be healthy! But if you cannot find a practitioner who has experienced SIBO firsthand, do not worry. There are individuals out there who are very compassionate and intelligent and may be able to help guide you along. You may just have to do some of the grunt work yourself.
- There is hope! After reading all of these tips, I realize that they may sound sort of depressing. But there are so many things to look forward to. If you got this far in my blog post, please give yourself a BIG HUG because it signifies that you are committed to taking control over your own health. When you tune into your body and make positive changes in your life, you are bound to experience the benefits. With a little bit of patience and perseverance, you will be able to enjoy a healthy and fulfilling life! I wish you the best of luck and I have an open door- comment box 😉 – for any questions or concerns.
Kat Immuneliving says
I love and appreciate your blog. It has helped me tremendously in my Sibo recovery journey !!
So happy to hear this!! Thank you 🙂
cathleen baxter says
This is a great post. Thank you for sharing. I have a question. What are you doing to chelate heavy metals if you have a sulfur issue? That seems to be the same roadblock for me.
I have been hesitant to share yet because I like to wait until I know something works for me before telling others about it. But if you want more information, look into Dr. Andy Cutler’s oral chelation protocol.
Sue Byers says
Thank you, Lindsey Byers told me about your blog plus sent the link. I found it very helpful so far. Thanks,again. Sue
Great advice! – I feel as if I have been living the same life as you! The thing that turned things around for me was Lactoferrin. I would say I am now 90% better compared to two years ago. Its all trial and error and don’t rush anything…
So glad to hear that you are experiencing results!
Would you be so kind as to tell me your regimen/protocol?
HI Shawn, I wasn’t sure if you were asking Riley or myself that question. For me six things helped me improve.
1) – I became aware that Stress is a big part of this, not saying stress is the cause – I am certain it wasn’t in my case as I used to have a really stressful life and in comparison when I got sick I had an easy life. But I found it very hard whilst trying to get better to be in any situation that made me uncomfortable. An example of this is for my job I sometimes need to go away to the city – around 2 hours away. The thought of my stomach getting bad whilst away actually made me feel ill and caused a loop, I was feeling bad before leaving the front door. My first piece of advice is to try and get some time out from these pressures – sort of un-commit yourself to any pending event you might be worried about ( I was even worried about attending my friends wedding)
2 – Limit Carbs and Sugar – I tried FodMaps, SCD and Fast Tract. I would say the Fodmaps was the most restrictive and Fast Tract the most lenient. Each diet I gave two months and kept a food diary throughout. I progressed through and realised that all diets had their qwerks, I think there is no 100% that works for everyone but start off with the basics and build up. I lived off of Chicken and Salad for weeks to get myself on a stable platform. Overall the Fast Tract was my favourite and worked best for me.
3 – If possible get a blood test to see if you are low in Vitamin D and lactose test to see if you are intolerant to Lactose, I was very low in vitamin D – which could have been the cause of all of this. With regards to Lactose – this is a massive restriction from many of the diets. If you know you aren’t intolerant the restrictive diets become a whole load easier to deal with and well if you test positive you may have just found your cause …
4 – Whilst on my last diet (Fast Tract) I made my own Kefir using organic whole milk – Its really easy to make, tastes horrible to start with but you soon get to accept it. I started off with half a teaspoon per day and used to get a burning feeling inside my stomach and by the end of month 2 I was drinking around a pint a day with no side effect at all.
5 – I forced myself into situations that made me feel uncomfortable (but gradually). I basically lost confidence in my stomach so wanted to avoid any situation that meant I was too far from my regular home / work. As I said in step one it was a sort of loop, my stomach would already be bad before I had even left home because I had woke up thinking about the possibility of my stomach being bad… Stupid hey?. The way to deal with this one for me was head on. So I knew the last time I went to London (I live in the UK by the way) I was really worried on the train (2 hour journey) and then being stuck in a meeting in London far away made me feel so so bad, yet coming back I felt brilliant So instead of going to a meeting I organised a weekend there to meet my friend and catchup. I booked a hotel close to where we were meeting, so I had a quick fall back fall back plan if I felt ill and secondly I felt by organising with a friend they would be a lot more understanding if I suddenly had to go due to feeling ill compared to being in a meeting and darting out.. . I did this same routine four times until it was normal and I actually barely worried. Then I upped the anti by not booking the hotel so I had to go up and come back (this sounds like nothing but it was a huge deal for me at the time. But again doing it enough times I started to gain trust back into my stomach and now I don’t think about travelling as an issue now.
6 – Lastly Lactoferrin, so this is something I am experimenting with now. I think anyone with SIBO is used to spending hours and hours searching the internet for cures. I wouldn’t like to think how much time I spent reading medical papers and looking up new treatments. Many articles I read talked about BioFilms (the protective shield around the bacteria you want rid of). I decided that before I went down the route of herbal antimicrobials I would use Lactoferrin. Lactoferrin binds iron and as far as I understand makes its harder for the pathogenic bacteria to use and easier for your body to use. My plan was each evening to take a 250mg tablet of Jarrow Lactoferrin (found on Amazon) for one month which could get rid of the biofilms and then add in some antimicrobial herbs and start experimenting. After the first week I got a massive headache (I am not sure if it was related or not – but I never get them so maybe?) but after progressing into the second week I started feeling different – more energy and my stomach felt a bit more stable. I introduced some foods that were previously trigger foods. They still caused issues but nowhere near as severe and by the next day I was better again. I kept going and introduced the trigger foods again as I thought that maybe it wasn’t so much the SIBO causing the issue but more to the point my body no longer being used to Carbs or Sugar. Two weeks of the small amounts trigger foods (one day some carbs, one day some chocolate)but the rest of the time maintaining the strict diet and it became apparent that I no longer had symptoms at all. It turns out that Lactoferrin is also an antimicrobial as well (I didn’t fully appreciate this until after)
So where am I now? – As I said above, I am 90% cured, I have confidence in my stomach again – I feel in control, I personally feel this is over 50% of the problem) once I felt in control my life spiralled upwards and things kept getting better.
The final 10% is what I am working on now. I am still on the same dose of Lactoferrin as above, my symptoms return if I eat a mass load of carbs and sugar ( I mean a lot! – and I know any normal healthy person shouldn’t eat that much anyway but … It makes me realise something is still there.) . The positive is no matter how bad I feel all is well by the next day.
My goal is to kick this for good and something you end up realising is you become your own scientific protect. I have dedicated so much to this, I have pages of links to articles. I have so many medical plans, I have food diaries all all with scores of how I am feeling – looking for patterns, looking for triggers, what helps , what doesn’t
My next step is Herbs and to looks at a plan of which ones are effective antimicrobials and come up with a test plan and see what happens.
BTW there is a load of other stuff I tried, various consultants, treatments that didn’t work – if I documented all it would be pages upon pages – above is the key points that worked for me.
Sorry this is so long, I hope it helps someone.
This gives me such hope – thank you so much for taking the time to reply. Be well!
Marjorie Rawson says
I am so happy to have found this site! I have been diagnosed with IBS-D and SiBO. It all started with a regular case of gastritis about a year and a half ago. Long story short I’ve been on Riflaxin with returning to symptoms a few weeks later. I definitely have sulfer smelling feces and urine. I need and welcome any help with this I can get. Please share any diets, supplements info ! I have been taking Probitoics, Vitamin D, C for years. Help!
Thanks for commenting. A bit of a shot in the dark here because you may already be aware of this- but I am curious whether you have done a trial removal of the vitamin C? Since it can cause diarrhea.
Best of luck!