Daniela Paolone is a passionate advocate for people with SIBO and shares with Rebecca her own SIBO journey. Daniela and Rebecca chat about what support you need to be successful on your SIBO journey, and why keeping positive is key. They talk about why being your own Private Investigator when seeking a diagnosis, and then going through the treatment, is so important. She shares why she has been involved with the SIBO Discussion/Support Group on Facebook as an admin for the past 3 years, and why it can be such a useful online community.
In Episode 22 of The Healthy Gut Podcast, we discuss:
✓ Why sharing your SIBO experiences can help you to feel supported on your journey
✓ How to find information within the SIBO community to increase your awareness of symptoms, treatments, practitioners and more
✓ Why listening to your own body and being your own Private Health Investigator is so important
✓ Why staying positive is so key to a successful SIBO journey
✓ How really understanding what your symptoms are will help you to move forward with diagnosis and treatment
✓ The emotional and financial costs of SIBO
✓ Dealing with and treating adrenal fatigue and exhaustion
✓ The impact of SIBO on your social and family life and how to cope with this
✓ How being brave mentally during your journey will help you to achieve positive attitudes
✓ Why taking time to relax, using guided imagery, tapping and/or meditation can really help to deal with pain and calm our nervous systems
Daniela Paolone is a licensed marriage and family therapist, community speaker, chronic illness advocate and writer in Westlake Village, CA. She is the founder of Westlake Village Counseling, where she specializes in supporting those living with chronic illness, pain, invisible illness, and anxiety. She offers community presentations where she covers these topics and ways to manage them through mindfulness, tapping, health psychology and more. Daniela’s own health challenges with SIBO, chronic pain and illness also led her to becoming an admin for the largest SIBO support group on Facebook for the past 3 years. In her spare time, she enjoys cooking, hiking, being silly with her family and having tea or some wine with her friends.
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Rebecca Coomes is an author, entrepreneur, passionate foodie and intrepid traveller. She transformed her health after a lifetime of chronic illness, and today guides others on their own path to wellness. She is the founder of The Healthy Gut, a platform where people can learn about gut health and how it is important for a healthy mind and body and coaches people on how to live well with SIBO. Rebecca is the author of the world’s first cookbooks for people treating Small Intestinal Bacterial Overgrowth (SIBO) and the host of the SIBO cooking show and The Healthy Gut podcast.
REBECCA: Welcome to the show Daniela Paolone. It’s great to have you on the Healthy Gut Podcast today
DANIELA: Thank you Rebecca for having me. It’s a real pleasure to be on your show.
REBECCA: Yeah and we connected actually through the SIBO support discussion group which is now quite an enormous Facebook group for people with SIBO. And I would love for you to share a little bit about your own personal journey with SIBO and talk more about that Facebook group.
[00:34] DANIELA: Well it’s really interesting because that part of my journey has a lot to do with the SIBO group and actually the SIBO group at this point, I just checked today is at just over 14,000 members which is pretty astounding considering it’s only been around since January of 2014. And so honestly the beginnings of the group and the way it got started was really a game changer for me and being able to learn more about my diagnosis of SIBO and how to manage it. and so I am so grateful that it got started to begin with.
And yeah and I don’t know there’s a fun little story behind it which I think sometimes people who are in the group don’t necessarily know about. And really it got started because of the first SIBO symposium that happened in January of 2014 were Dr. Siebecker and Dr. Pimentel, Dr. Sandberg Lewis and others presented at the clinic up in Portland. I don’t know how I found out about but I found out about it, I decided to attend the webinar and a lot of other people did too. And so the nice part about attending it like that was, a) I didn’t get to travel so I got to stay home and watch it on my computer and it was a weekend event. But also they gave us the opportunity to have a chat box just for the webinar attendees.
So we all got to meet each other that way. And so that’s how I met Kenny King who is the creator of the SIBO support discussion group and that’s how I met other people as well. And so we were all just so excited to be in a space with other people like us that we didn’t want that go away. We wanted to try and figure out how we can keep these connections going. And so there was a lot of brainstorming at the end of the day. It was decided Facebook would be the best way to go. And at that time I didn’t even have a Facebook account. So I was like, “Well I will be more than happy to get everyone’s email who wants to be in this group. But beyond that I am kind of a fish out of water. I don’t really know anything about Facebook which is really funny.
And so Kenny was nice enough to actually get it going and starting it up. But it was really a group effort. It was a community effort and just having that opportunity for all of us to like get to know each other to learn about each of our specific conditions and symptoms was really eye opening because prior to that I was really in the dark. I had no idea what was going on. I didn’t know where to look. I didn’t know what to research and the nice part too was the people who did attend in the webinar who were the founding members of the group, a lot of them were also health practitioners. Maybe they were just health practitioners and some of them also had SIBO. So it was really a great collaborative little group that we got started with about maybe twenty members. And then obviously from there it just sky-rocketed to where it is now.
So it holds a special place in my heart. As cheesy as it might sound but I am very grateful to be a part of that community because it gave me so much.
[4:16] REBECCA: And I mirror the sentiment. It was the first Facebook group I found when I went online and started to research SIBO after being given the diagnosis. And I felt so alone and isolated and lost. Whilst I felt relief at having this diagnosis, I just thought, “Gosh no one I know has this and no one understand what I am going through,” and then I found this Facebook group which I think at that time when I went into it was probably only about maybe 7 or 8000 people in it. So it has grown significantly in the time since I first got involved. It was really great to know that you can go online and you could be having a rough a day and you could put a post up and people from all around the world would be there to support you. It was really comforting to know that.
[5:09] DANIELA: it is really comforting to know that and that’s the thing I like too is it is all around the world like, I mean the people who I met at the SIBO symposium, many of them are still in the group and a lot of us maybe we have not met in person but we’ve had maybe Skype conversations. So we have like our little appointment times where we catch up or we just have a phone conversation just to check in with each other. So you know it’s really like you said, it really helped open up the gateway to like not feeling so isolated like a fish out of water and totally feeling misunderstood and like alone and having the opportunity with the amazingness that technology offers us to have these different ways to communicate and to reach out. And I formed friendships with people who live really far from me but you know one day we will maybe get to meet. That would be nice. In the meantime we can schedule a little Skype sessions and just talk and just connect on that level and I think that’s a really important part of the SIBO journey or any journey for someone dealing with the chronic illness.
Having some people who you really feel get it where you can talk, vent, share your ups and your downs and also be a good listener for them as well because we don’t always, oftentimes that part of it is really hard to come by and so the group can offer that in many ways.
[6:49] REBECCA: it can. it can be very comforting to know that whilst you may not feel that you have support from friends and family in your immediate world that you can log on to the group and you will be able to get the support there because somebody in the group has gone through what you are going through. I don’t think I have ever seen anybody put a post up and asked for help and no one has either shared an experience or similar experience or at least some support or guidance that they can provide which can be really when you are feeling pretty low.
I think one of the things and I think it is fair to say this because it is a platform where often people go to vent and express their frustration in their day to day world when you first come into it you might feel that gosh all these people are really sick. Where are the positive stories? What is your kind of take on the fact that there is a lot of people out there talking about what isn’t going well for them that day and perhaps not so many stories of all the highs that happened and there’s plenty of success stories out of that group as well.
[7:58] DANIELA: Yeah that is a really good point. Initially people who maybe are first diagnosed or suspect they have SIBO will join the group and it can really be overwhelming because the group is so large people post questions all the time. a lot of them are the same questions too. But you know that’s fine. Everyone is always willing to answer and get support. But you are right a lot of it is venting. I am frustrated, I am so mad at my boyfriend or whatever it is. And yeah that can really take a toll too. So you really have to check in with yourself and find a balance. It can easily become all consuming. Dealing with the SIBO diagnosis or any diagnosis where it’s really not very well known about. Even among the medical professionals. That kind of brings up its own different challenges that you have to deal with. And so I lost my train of thought…
[9:03] REBECCA: I think what I have seen with the group is that you do need to use the group in an appropriate way for you at that point in your journey and if I think about myself, in the early days of my SIBO diagnosis I think it is fair to say I became obsessed about finding out everything I could about SIBO because I was so excited to have a diagnosis finally after so many years of looking for answer. But that obsession I think at times became a little unhealthy because I spent a lot of time in that Facebook group and I really took on board the emotional impact of other people saying how sick they felt. And so I had to learn to moderate my time in the group. And as I got well I now use my time to offer positive suggestions and support to people when I know that they have… Well you can see through their post that they are having a tough time. But I actively choose to stay within the group to share the positive stories that happen from SIBO.
[10:10] DANIELA: Yes, and I am glad you stayed.
Like when I had lost my train of thought and then now it has come back.
Ok so yes, a lot of times the comments do tend to be – I’m overwhelmed, I’m stressed, I don’t feel people understand me or my relationship is suffering, or I just don’t feel well. Whatever it is yeah that can really take a toll on someone. So you really have to check in with yourself and make sure that you are not like you say, taking on other people’s emotions and experiences. And that can be really tricky when you are already on an emotionally maybe vulnerable place because you are just in the beginning stages of starting to learn about what SIBO is for you and all that comes with it. and the social impact that it can have on your life and the impacts it might have at work or with family and just any changes that you might have to take on to manage the condition and to work towards getting better.
So that can be really hard but I also think it’s fair to say that is just part of the human condition. In general we have a tendency to perhaps put more attention on the negative and what is not working. And that is just kind of the way our brains tend to work. Unless you are one of those people who is really into mindfulness practices and practices a lot of meditation. If that is how you are as a person then that will make positive changes in actually how your brain functions and less attention would be on the negative and more on the positive. So I just think in general it is just in our nature to put more attention on the negative and what is not working.
And that is just kind of the way our brains tend to work. Unless you are one of those people who is really into mindfulness practices and practices a lot of meditation. If that is who you are as a person, then that will make positive changes in actually how your brain functions and less attention would be on the negative and more on the positive. So I just think in general it is just in our nature to kind of put more attention on the negative but also like you say with that said we have to just tend and take in the information as we feel ready. And if it is too much then we need to step back. And when we feel like we are getting the support we need in other ways or we are just learning in small increments little by little at a pace that is like les overwhelming, that is ok too. Because I know a lot of times people who join the group are like, “I am glad I joined the group. It’s great! There’s so much information but I am in information overload. In my newsfeed, in my Facebook account is like dominated by SIBO comments all the time. It’s like too much.
And so that’s where they just have to kind of push pause, check in with themselves and see where they can find some balance and maybe they just go in there once a week or maybe they just go in and access the files section of the group and just kind of skim it over because there are SIBO success stories in there and there are people who stay in who have recovered from SIBO or who have gotten to a better place where they have been able to maintain their symptoms and get their life back lose to maybe not absolutely back to what it was but their quality of life has improved where they can be a part of the world where they can function and work and live and just feel you know be in a much better place. Emotionally, physically, and health wise.
So some people do leave the group once they get better which that also makes senses you know. Once you have gotten better then maybe for that person it just is mentally just in their best interest to kind of put this chapter in the past and move on. But before they leave I always encourage them please before you leave can you type up a little bit about your journey, what helped you, what you learned, what were your takeaways just so that people can have the opportunity to check and look into that for themselves and just learn from your experiences. What worked for them and see what might benefit their own situation.
[14:10] REBECCA: Yeah and you talked about the file section of that group and I think it is often… it is an underutilized resource. There is a lot of really valuable information in there and people often don’t see it. so can you talk a bit about what is in the file section and even how people find it if they are listening to this podcast and thinking, “I never knew there was a file section to the Facebook group.”
[14:37] DANIELA: That’s very true. A lot of people don’t know and I know like if you access the Facebook group on your desktop or laptop computer then you will see at the top of the group you will open up to the group page and then you will see like tabs at the tops. It will say discussion and that is the SIBO forum where everyone types in their questions and response to comments and such. And then there’s other sections as well. Members you can see who is in the group I believe. And then as you go along the last tab on the far right is actually the files tab. So that is where you will access it. Now if you are accessing it on your cellphone, it’s a little bit different but you can still get it. I think you just go under more. Like you go to the group and then you go to a more button and then it has files listed in there. I think. Don’t quote me on that one but it is easier to access on a desktop or laptop.
And in the file section there is actual information from some of the leaders in the SIBO research and treatment protocols such as Dr. Siebecker, Dr. Sandberg-Lewis, Dr. Weinstock. I am sure there are stuff there from Dr. Pimentel. And that’s also to say that we have a lot of big name medical health professionals, some of them are in the top, leading researchers or doctors in this field of SIBO research and treatment that are a part of the group. They are not necessarily active but it is really nice to see that as an admin. We get so many people who join I would say like at least like 200 a day generally speaking. I would say as how many join each day. And sometimes I catch some of the names because there are 3 admins. There’s Katie, myself, and Kenny. And sometimes I see these big name doctors and I am like I get so excited.
And that’s just really nice to see that there are so many medical health professional who are in the group who are just there to kind of learn from the patient. And they will try a little bit here and there and we have to just remind them that this is not a place to prescribe or to give medical advice. That is something that we have to monitor really well. Just among the members in general but it’s nice to see that there is this community of not just the patients in the group, it’s also a lot of medical health professionals who are really realizing that this condition is really prevalent and just going undiagnosed a lot.
So that really is nice to see.
[17:32] REBECCA: yeah and I think it is great to see medical practitioners in there because they can learn so much from just listening to what people with SIBO are talking about. And so I am sure it can be highly beneficial to the when thinking about how do they support the treatment of a patient. The lifestyle component of living with SIBO is so important and dealing with a condition like SIBO is so multifaceted. It is not just about popping a few pills and drinking potions to get rid of it. It’s really all-encompassing and I feel confident that any practitioner in the group would be able to see that other challenges that their patients experience regularly based on what people are writing about.
[18:20] DANIELA: I agree and I think Yes you are absolutely right. It is a multifaceted approach and that is the one thing I really, as a licensed mental health therapist, you know I notice how much it can have an emotional toll on people. Like we said before feeling isolated, misunderstood, judged. Maybe not being taken seriously by their friends and family who think, “Oh they are just being dramatic or maybe they are just wanting attention or something. I don’t know what their problem is but they got to figure it out or something.”
Maybe they just don’t understand and that’s kind of how the people in their lives are kind of responding or they just don’t know what to say. And the same goes for the patient in dealing with doctors or other health practitioners because before I got diagnosed I was kind of being told, “Are you sure you are not stressed? Have you looked at your stress levels because it sounds like you need to work in that.” so basically the message was – it sounds like you are kind of just needing to handle your emotional state lady and maybe you are imagining things. And that was really an interesting experience. And before I got sick it was more about – oh you know you go to the doctor whatever I had in the past, I’ve had a couple surgeries before having the diagnosis of SIBO and really starting to feel these symptoms of SIBO. But in the past you are going to the doctor, you go, you listen to what they say, you follow their advice.
And that is kind of how I was approaching it when I finally got diagnosed. It took a long time to get diagnosed. And then I realized that really wasn’t working because I was listening to them and I wasn’t really getting anywhere which was really frustrating. So I had to switch gears a little bit and acknowledge with myself, I know my body best, I know what is going on with my health better than anyone right now because I inhabit my body. I know what it is doing. I know how it responds to certain foods and how my body hurts and the fatigue and the lack of mental clarity and this coming and going. And it’s worse some days and less problematic in others. And that is not something they are going to really understand. And that is something I think doctors are really slowly getting more and more exposure to.
My hope is that, as the SIBO conferences continue that that part of the condition gets more attention because I don’t really see it happening as of yet. And that social, emotional part of having this condition or having a chronic illness I think doesn’t get enough attention. And if doesn’t get addressed it can really make the healing and recovery part a lot harder on the person and also on our family. So it has this domino effect.
[21:47] REBECCA: Uhmmm it does. It’s really interesting. It seems to be such a common story whereby I think the general rule is that and not everybody is like this, it’s because the other admin Katie Caldwell, she was diagnosed with SIBO very quickly and I am so lucky and grateful for her experience that she did have that when she talks to us on episode 6 of the Healthy Gut Podcast. But for the rest of us, I think it is very common that it takes us many many years and quite often I share exactly the same story as you whereby went to doctors and they said, “It’s all in your head, blood tests has come back fine, there’s nothing wrong with you.“ And I know when I interviewed Angel Pifer on episode 8, we talked about being your own private investigator and really taking ownership of what’s going on in your body because we are the only people that know our body well. And just recently I had an interesting discussion with somebody in the Facebook group who was really angry that doctors, she felt that she should go to a doctor and they should know immediately what was wrong with her.
And I was saying,” Well we are the only ones that know what is wrong with us. Truly, we are the only ones that know what is wrong with us because we live in our bodies. And I think that it is a very interesting point of where you are in your journey as to whether you feel that you can own what is going on with you or whether you really want somebody else to own what is going on with you. I personally believe and it’s just my opinion that in order to get true health I need to take full ownership of my health because no one else knows me like I know me.
[23:28] DANIELA: Absolutely. I mean I think just like you said I was telling someone the other day, I said, “Having SIBO like you have mentioned earlier, you said finally I had a diagnosis.” That was my feeling too initially because it took so long of hearing from doctors so long. Just try this or that or you just need to meditate or go to yoga or try some probiotics. And just actually realizing that having this condition is I call it an emotional roller coaster because you have ups and downs. So it took me… it really isn’t that bad. It took me about 3 years to finally get a SIBO diagnosis. I know for other people it’s actually quite a bit longer. But I also know, I am 34, I also know that ever since I was in middle school, I was having gastrointestinal complaints. And they weren’t life impacting. They weren’t impacting my ability to go to school.
But it gradually just became more and more prevalent as I got older. And by the time I was 25 it was really starting to interfere. And so it’s just an emotional roller coaster and having initially been diagnosed with the IBS I was like, “Ok well that’s cool. Alright I got a diagnosis.” And then I looked into that more and I said, “Well that IBS doesn’t get me anything.” Like that is a diagnosis of exclusion. That is just saying, “Well we have done these test, you don’t have Crohn’s or Colitis, this or that.” so we really don’t know well what’s wrong with you. But since you are saying you have these symptoms and they are gut related we are going to give you this diagnosis. And send you on your way. And I was like, “Hmm ok I guess I will go along with what you are saying.” I mean they never told me it’s a diagnosis of exclusion. That was something I had to figure out on my own but I learned because I kept doing what they said. You know, “DO a food journal, try some probiotics. Do all these things,” and nothing was working. I mean this was more than IBS. I know I am not crazy. And at that time I was in graduate school to become a therapist.
So like listen I know mental health. I understand that people can manifest. That is possible. There are conditions where people are under severe distress and they can add to the symptoms or actually create them. And so I told myself, I understand this. I said, but this is not that. Like there is more going on? And so finally 3 years later I get a diagnosis but only because I was like you had mentioned, I was my own detective. I had to be my own advocate. And I stumbled upon Dr. Pimentel’s book, the new IBS solution. And that was the golden ticket for me because without that book I would not have had the knowledge. Enough of a basic knowledge of what to know to ask for. And that was the problem I was running into. At that I was in an information draught. I didn’t know where to go or how to even research.
I finally spoke and I’m like “Ok finally, I am feeling like I have some guidance like there is a path.” And so I came armed and I said, “OK this is good. This doctor is the head of gastroenterology at Cedar Sinai in Los Angeles. I live just outside of the city if LA.” I said all the GI doctors here know who he is. So this book should carry some cloud. And it did. I brought the book. my GI doctor said, “Oh yeah, I know Dr. Pimentel.” I said, “Well ok this is what he is saying.”
So it was this fine dance of like, “Hey I want you to take me seriously because I know there are more going on in IBS even though you disagree right now doctor. But this is what Dr. Pimentel is saying and this is… because of that information which I am presenting to you, this is what I would like to do. will you work with me?”
So it was kind of like it got to a point where I had to be like an attorney getting ready to go to court to have my evidence. As horrible as that sounds but that’s how I kinda how I have to go about it because I knew that if I didn’t anything, if I didn’t have questions or if I didn’t have anything concrete or scientific or whatever, it would just be all for nothing. Like I would go and nothing would get accomplished. No steps would take place. And so that’s what we did and he is like, “Ok.” He is like, “Do you want the breath test?” He said, “Let’s do these things first.”
So we had to negotiate and I said, “Ok fine. As long as we can get to the test.” And then we get to the test and it comes out positive and I am so over the moon. And I am like, “Yes I feel validated!” And in that moment I realized, ok this is a sign. Like this is my big takeaway. I have to really trust my instincts here and this is where I intuitively feeling I need to go. This is the direction that I needed. And this was the test I needed. And guess what, I was right. They didn’t think I had it but he was willing to go along with me which I am very appreciative of because finally I got the breath test.
And then I was excited, validated. Yey! Ok I got the diagnosis. So that was like the high, the emotional high. And then I am like, “Ok now what?” and that opens up this whole other kinds of horrors like this is what I have and now I am researching it. And now I am getting a little overwhelmed because it is not so easy and there is no magic pill and there is no magic formula to get better. You just kind of have to plot along, figure it out, what might help you and what approaches to try.
So that was then the, oh my gosh, process.
[29:47] REBECCA: Yeah, I think that is, it’s just such a common process for people where you get that initial relief and then you get that, “Oh now what. Oh my God, what am I going to do?”
I know that my listeners will want to know because those of us with SIBO seem to be quite fixated on with your hydrogen dominant or methane dominant. Are you comfortable sharing whether you are hydrogen or methane dominant SIBO?
[30:12] DANIELA: Oh yeah, that’s fine. I am methane dominant. So that typically generally speaking is the harder one to treat. But what I found that helped me was the combination of prescription medication and herbals. I did prescription three times but in three rounds of that over… I have also been… I would say I have been in treatment for SIBO for about 4 years but I don’t want to scare people. There were also other conditions I was working on as well. So I wasn’t consistently treating. I would do a round of treatment and then take a break, give my body a rest, work on other aspects like adrenal health. I need to work on my adrenal support. That was a big part of my healing process.
But I also it also took that long because I used a variety of doctors. I went through three GI doctors. All of them had amazing strengths and I learned a lot from each of them but at some point we plateaued and they just weren’t willing to keep investigating because I said, “OK I know I have IBS and I know I have SIBO, but I have some other stuff going on that doesn’t follow into these categories. And I need more support here. I need someone who is willing to go along with me on this.” And I did come across this amazing GI doctor which I have now and because of him I am now working with specialist and getting other treatments for other things that are going on. So I am very grateful but it is a process and I had to kind of look outside of my insurance and go outside of that and look at alternative practitioners.
I am a patient of Dr. Siebecker’s and I am so grateful to be one of her patients because she doesn’t take on patients at this point. But she was a big part of my healing process. So I have worked with naturopathic doctors. I have worked with chiropractors who practice functional medicine. And that has been pivotal. just working with certain practitioners got me to a place where I wasn’t lying in bed all day because I was exhausted, where I wasn’t in such excruciating pain that I got used to it, that I didn’t realize I was in pain and I was tired.
So for me it was a combination of prescription and verbals and also doing all to of testing to kind of gauge where my numbers were going because at a certain point I had a bad systemic infection going on which one of my functional medicine practitioners diagnosed. And he said, “No wonder you feel lousy.” He said, “Your white blood cell count is just insanely high.” He said, “You poor thing.” We didn’t know what the infection was but we worked on it and we did herbal treatments and I really credit him. That was before I attended the symposium. That was early on in my journey but it’s a process. It’s a process where you learn a lot about all the different approaches that you can take on and in my case the way I got to a better quality of life where I wasn’t feeling so fatigued and feeling so much pain was trying out these different practitioners. While not all of them worked out but a lot of them did and I am forever grateful because they each had their strengths.
And I would say the reason I am doing today is because I got help in my adrenal support because that pretty long. I was in stage three adrenal fatigue and working with a specialist who strictly does that kind of work. That was the key for me because the way he explained it really give your body a chance to get the best benefit out of doing these herbal treatments and prescription treatments and all these other approaches. You have to really hone in and give your adrenals that foundational boost because that is the energy resource your body will pull I from when you are taking these pills that are going to make you feel tired or you are going to have unpleasant detox where you are going to feel moody and tired.
So that is the resource that your body is going to tap into. And if is already on empty then the ability to really get the most out of that particular treatment won’t necessarily be there. Now that is his opinion. I am not a medical professional but in this case that helped me. That did. I did see an improvement.
[35:29] REBECCA: and what does adrenal fatigue feel like for the people that are listening who perhaps have never heard of it or wondered if they themselves might have some issue on their adrenals.
[35:41] DANIELA: Essentially it’s just not having a lot of energy, feeling tired, feeling moody. If anyone is having like thyroid… if they have thyroid conditions or are borderline thyroid to thyroid and the adrenals are intimately connected and so if they are just feeling like fatigue or moodiness, another key sign if someone is having adrenal fatigue is not getting quality sleep. But that is really hard to gauge and I didn’t realize it that my sleep was not good because again just like being in pain, you lose touch of having a perspective about what it feels like to not be in pain because you are so used to it after a while that it becomes your new normal. And the same goes for not getting quality sleep. At least for me I can’t speak for others. And so those are textbook signs.
And so I have heard other people I know now have all these gadgets out there that can kind of measure your sleep quality or when you come in and out of the different sleep states. I never went that route. I don’t think that stuff was even around when I was going through this but just getting that support with supplementation, that was what was needed to kind of buildup cortisol levels without getting too technical when we are stressed out. When we are in this place of having a chronic illness, it can really stress our bodies on a biological level also mentally and emotionally. And that can overwork the adrenal glands to a point where they just get tired. They sputter out.
And so that’s when the adrenal fatigue can kick in because the adrenal glands are not operating like they normally should and so the cortisol levels go down, hormone levels are impacted, thyroid hormone is affected because it needs cortisol to be supported, to function within its normal range whatever that is for the person. But all of this that I am saying is outside of my scope of being a therapist. This is just what I have learned as a patient and also this is also really tied to the functional medicine world. That’s where this information is coming from. It’s not something when I shared… when I got testing done for my hormone levels, my adrenal levels that traditional medicine at least here in the States, primary care doctor and the others were just like, “Oh well you just need to take this pill or something.”
But that was like a band aid. It wasn’t really into actually the root of the issue. And so I didn’t go along with that because I didn’t feel that was what was best for me. And I said, “You know what, I think I am just going to do my own thing. I am seeing this doctor outside of my insurance.” I told them that and then a year later we retested and the numbers got better and better and I am like, “Oh wow that’s working. That’s great!” and I said, “Yeah, I know. It’s an expensive way to go about it but this is better for me because this is actually getting to the core issue instead of putting a band aid on something that’s still going to be there.”
[39:34] REBECCA: And if anyone listening wants to learn more about adrenal fatigue and the connection with thyroid and SIBO, I have got a great episode with Dr. Michael Ruscio on episode 12. So you can head back to episode 12 and learn more about it there. I think something very interesting that you are talking about and we don’t experience this to this level in Australia is around having to choose to go outside of your insurance cover. And what I find interesting is here in Australia we have private insurance and we also public health care system. But we are very used to paying for things. We have to pay for our prescription medication and we have to pay for treatment and even when we go to see the doctor. Generally, we still have to pay something even if it is covered by our medical system. We get a discount but we still have to pay.
So the concept for us Australians to go and seek additional support perhaps with a natural therapist, functional medical doctor or a naturopath is not fun to us because we are used to paying whereas what I get the sense from my US based SIBO’ers is that it can often be a major barrier for people because they want to get it all done under insurance and I do wonder if that perhaps pulls people back in terms of getting the right people, the right health care team for themselves.
[41:04] DANIELA: Yes, I think that happens a lot. And also I mean people who have insurance just because they have insurance doesn’t mean they don’t pay anything. They still have to pay so much month for their insurance. They could have a high deductible. So like especially right now the deductibles can be like 5, 6000 dollars before insurance will kick in for certain conditions or under certain categories. So even with insurance it is expensive having to co-pay maybe 30 or 50 dollars to go see your doctor or to get your prescription. Just because we have insurance here everyone’s insurance is different too. It’s not universal. It’s not all the same. It’s all different depending on your employer or if you have your own personal insurance that you have as standalone.
So it is expensive as it is having insurance. So then the idea of having to find a doctor outside of your insurance because the doctors who are paneled with your insurances just aren’t cutting it for you is definitely a barrier because this condition is very expensive. It can get really expensive quickly. It can get overwhelming emotionally but it can also get overwhelming financially because all of the medications…. For example here in the states, I am very lucky with my insurance because they paid for my medication that a lot of people have to even let their insurance it gets denied. And that medication easily goes for 900 dollars or 1000 dollars or more just for a week’s worth of pills when Dr. Pimentel’s recommendation is to take it for 2 weeks.
And so it can be a barrier to a lot of people.
[43:07] REBECCA: Definitely. And like you say quite overwhelming. And does the financial cost of the treatment itself and there’s also the additional costs around often changing the way you eat and quite often people will need to quite consider overhauls to their diet. Particularly if they have eaten a very classic western diet which here in Australia and the states, we eat very similarly in the sense that we have a pretty high grain and carbohydrate based diet and when we move to looking after our bodies with SIBO quite often we need to move more to a protein and vegetable diet and that can be more expensive and very much perceived to be a much more expensive way of eating as well.
How have you coped yourself Daniela around the financial and the emotional cost if you like of SIBO?
[44:08] DANIELA: yeah I would say the financial has been a tough one. It has been very expensive for me. Again I got the best of the best support with certain practitioners but that was also incredibly expensive because there was no chance my insurance was going to even pay for a penny. And then to add to that all the tests that needed to be done and not just…it’s not just test you have done once and then that’s it you go back. Just like the breath test. There’s the adrenal test I did a few different times. Like my doctor wanted me to do it every three months and I said, “Listen this doesn’t mean I only have so much money. So I am going to have to space it out a little bit here.” I have to stagger for my own sanity mental sanity and for the financial. And for the things I had to stagger out my appointments with Doctors and I just saw maybe one or two practitioners. At that time it was outside of insurance because it’s very expensive.
So that’s the financial plus the supplement. You have to mention the supplements just to try and have better digestion and you know manage the breath test numbers and to keep the methane low. I would take different supplement for different things and timing out when I would take them. OK I am going to take this pill first, I am going to await a half hour and then I am going to take these pills which were the herbal like the herbal antibiotics before I eat a meal. So it was so… as far as the social impact needless to say, I stopped eating out. It was just a lot easier to eat at home. Just do that, go through life like that for a little while. And that was really hard for me because I come from an Italian and a Latino background and so food, that kind of food I grew up eating and the sense of community around food which ties to so many cultures, that’s just our way of connecting. All of that kind of went down. It just became less because it was just easier to not engage in that way because it just opened up so many questions.
“Oh why aren’t you eating that pasta?” Or, “You don’t want to have tamales.” Or whatever lies in to having to have that conversation. That in that in itself can be exhausting because then after all you start to feel like a broken record. Maybe it’s different family members that just aren’t aware of what is going on so you just kind of…I just found myself not doing that as much the eating with others like in a social setting or at a restaurant because then it would just open all these question that I wasn’t necessarily in the mood to go into. Because you kind of just want to escape a little bit once in awhile and just like enjoy the moment instead of having to like bring it up again.
So that was hard and also I think a big part of this was the fact that having it being a long progression of symptoms being worse before finally getting diagnosed, that takes a toll because already your sense of self is being kid of challenged the person you were when you were totally healthy or feeling like really like, “Hey I’m good. You know.” Like that sort of gets shipped away. It can. It happened to me. I mean it doesn’t happen to everybody. I think I have been really lucky. And getting a doctor who was like, “Oh sounds like you got SIBO. We got to do an eye test.”
If that had happened within the first years or so I don’t think it would have impacted me so much as it has. That’s not to say that life is still that way, life has gotten better and in a healthier place I can tolerate more foods, I can go out and engage with that food social aspect more easily now. If for a while that was a challenge and instead of going to meet friends for lunch, it was like let’s just go grab some tea. Like I don’t even drink coffee. Or let’s go for a walk but I can’t go for a really long walk because anything more than 30 minutes that’s like too much for my body right now. So I can’t do more than that but we can sit and talk and you know…
So it had its impact on the things I wanted to do.
[49:13] REBECCA: I think…I don’t know if anyone has studied this but it would be very interesting to know the length of time it takes to get the SIBO diagnosis and the psychological impact that has. And I feel very much like you as well around because for so many years no believed me at a medical level. My Mum believed me. She could see…. I remember her patting like my very distended belly and saying, “Oh darling, Oh gosh I didn’t realized it got this bad” and being quite upset because she could visibly see how much pain I was in. but I really suffered with anxiety and some depression and just not feeling perhaps that I was worthy because people were starting to really question my sanity. And it wasn’t my sanity that was in question.
In fact that my guts were just in a really bad state. I think also you are raising just how you have to alter the way you eat and the way you socialize. And it doesn’t mean it is forever but it means it’s for a period of time to support yourself to return to health or to support your journey to health. And I think it’s important to tell our listeners that it’s also ok to mourn that. I know I mourned my old life. I really missed going out and drinking and eating foods and that had a very big impact on my relationship. My partner was very frustrated that I couldn’t just go to a restaurant because we love food. We are big foodies and that had an impact on him as well.
And so this little condition, this little bacteria can be quite wide ranging. What is your advice to anyone who is listening who has is going, Yes that’s me, oh gosh that’s why… how do I cope for this social situation? How do I cope with the anxiety I feel around this condition? What have been some of your key takeaways or pieces of advice that you can offer?
[51:22] DANIELA: I think what really helped me and I think what helps a lot of people too is knowing that it’s ok to feel what you feel. Like doing your best is hard. It’s hard to actually follow this advice but do your best to not beat yourself up over feeling down. If you are feeling down that is ok. You are allowed. You know this is a big shift for a lot of people and how they live life and how they interact with others and how they see themselves. This was not the path I had planned. That’s for sure. And I am sure that goes for everybody. No one expects to go through all these hurdles. And so to have these expectation that we should be more resilient or we should just buck up and figure it out and we will figure it out and life will go on.
That’s not really being authentic. We have to really honor how we feel and acknowledge how we feel and find those key people who get it. Maybe they have SIBO, maybe they don’t. Some of my nearest and dearest friends have SIBO and some do not. But the common thread is that we understand each other. And to have…if you can find that person or group or core people who are there for you, you say, “Listen I am sorry to hear you are not feeling well but don’t worry. I know you have plans to go see that movie but that’s ok. Let’s just hang out at your house. We’ll watch something on Netflix. Whatever. Like having someone who understands.
I am not really trying not to be a flake you know. Like I just don’t feel well or I always said I had these terrible symptoms of nausea or I feel really lightheaded and I don’t think it is safe for me to get in the car and drive over to see you. If you can find people who really understand that and know that you are not wanting their sympathy because getting that kind of feedback when you are dealing with something when you are already not feeling well can often… they can feel even worst because you are just feeling more like pathetic. Like, “Oh God I am getting pity from this person.” And that is really not what I want. You know.
So for people who are listening, who are friends with folks who’ve had SIBO just listen and go, “Hey I am sorry you are having a hard day. I am here for you. Let me know if you need anything.” And I think just getting that kind of feedback can be so powerful and healing and comforting. So just acknowledge where you are at.
Yeah acknowledge where you are at and it’s ok. And how can we expect ourselves to feel good and happy when we are in pain. Like that just doesn’t make sense. If you are in a lot of pain physically, emotionally, it’s not how our body operates. And that’s like just how our brain and our gut is connected and that is connected by this high way called the vagus nerve. And that sends signals.
So if someone is sick with an upset stomach or they have the stomach flu, I don’t imagine they are going to be in a good mood. That’s not the case. And so I kind of explained it to people I met. Sometimes it’s like having the stomach flu or having a long standing flu or virus that just is not going away. And some days you are feeling better and other days you are not. But if you that imbalance in your stomach you are just feeling unwell or you ate something that upset your stomach that sends signals through your vagus nerve and communicates through your brain. It says, “hey something’s haywire with your stomach. So I am going to match that.”
So if the stomach is in distress it is going to send that message to the brain and that is going to make the brain feel more stressed, anxious, irritable. And so it is only natural for us to have these different moods and experiences.
And also if we are dealing with SIBO or any other health condition there is a possibility that we are also dealing with inflammation. I know that was my case because I had a high white blood cell count. And so my doctor said, “Wow you’re inflammation, no wonder you are in a lot of pain. You have really bad… you’ve got a really high inflammation markers that came up in another test.” He said, “That makes sense because your white blood count is high.”
So if you got a lot of inflammation in your body that can often connect and tie into feeling pain in your body. And when we are in pain we are not going to be in a good mood either. I mean so a lot of this we just have to cut ourselves some slack. Like A causes B to happen sometimes. Or B causes A to happen sometimes. So if we are anxious in our minds, we are really stressed out, that can cause us to have a nervous stomach too. You know like anticipating something that can worsen our symptoms.
So I don’t know if that is overwhelming for people but I don’t know. I try to analyze it a little bit because there are things also beyond us that is beyond our conscious thinking that are happening on a biological level that kind of can take over too.
[56:56] REBECCA: Yeah definitely. I think that the pain piece is really interesting and important to talk about because this condition is painful as a general rule. Most people, not all, but most people have some discomfort or pain from it. And I think back to myself and I used to almost look out for the pain. I was very used to pain because I was in pain all the time and my pain threshold interestingly in my abdominal area is very high because I have had so much of it. In other areas, I get a tiny splinter in my finger and the world is ending. But if I get really intense stomach cramps, in fact my appendix was rupturing and I was refusing to go to hospital because I thought it was just another bout of stomach cramps and I was gasping for breath because I was in so much pain. And it was only a friend who said, “If you don’t call an ambulance, I will.” I said, “Ok I won’t call an ambulance. I will just call a doctor.”
And then he said, “Go straight to a hospital.” And my appendix ruptured. I was very very unwell. But the point I am trying to make is what is your view around the real pain versus perceived. We are expecting to be there, therefore it creates the pain because it is so present in our everyday lives.
[58:13] DANIELA: I think yeah. We can definitely become hypervigilant like hypersensitive. Not like emotional sensitive but just hyper aware of our bodies because of the unpleasantness that SIBO brings. So if we eat something and then we have this like horrible reaction to it, that can kind of scar us a little bit and make us kind of feel or become a little more hypervigilant. So we can kind of be this anticipatory fear of like, “oh, I don’t know if I want to eat at that restaurant because last time I was there I got so sick.” Or, “I felt fine then but then I got home and I was just curled up in a ball because I was in so much pain.”
So we really have to, as hard as it is, we really have to try to work on managing our stress and working on the dialogue we have within ourselves. Because if we continue to go into that, “Oh I don’t want to do this because this is what’s going to happen or I just know I am going to feel this way.” Well actually if you were to kind think….well from a psychology standpoint, the words we say do have a resonance within our body. So if we are putting that out there verbally outside or just within ourselves, we are actually working towards making that come true. It is kind of called the self-fulfillment prophecy. So if you keep saying something enough it can actually happen.
So we have to be really careful in how we phrase things, how we work on thinking about things. OK fine. Acknowledge that the last time you were at that restaurant, you’ve had a horrible reaction. OK I know I am going to feel a little uncomfortable going to this event or going back to that restaurant, however, I am going to be really mindful and instead of letting them season the vegetables I am just going to ask it to be prepared this way and I am going to bring my own seasoning and something. So there is a shift in that dialogue because the more we are able to have that shift in our dialogue of allowing there to be an opening for resolution even in the smallest increments that plays a part in how we perceive pain.
So if we are really emotionally upset about something and we are feeling pain, the likelihood of us saying that pain is very intense is a lot higher than what that pain would be if we were in an emotionally neutral place.
I am referencing an actual study between a group, two groups of people. One group had fibromyalgia. Had a diagnosis of that and the other group did not? And they were both given an electrical stimulus of pain. And each person in each group had to do this twice. And the first time the scientist said, “I want you to think of an emotionally neutral event and I am going to think of it now. OK you are going to get the stimulus of pain and I want you to rate it on a scale of 1 to 10.” And then at a later time they revisited that same patient and this time they said, “Ok I want you to think of an emotionally upsetting event,” and the patients didn’t know it at that time but the scientist gave them the same level of intensity of pain. And those people consistently in both groups reported that pain to be a lot higher when they were emotionally upset.
So it just goes to show that our emotional state and how we cope what outlets we used to distress to vent can really play a part in how we feel within our bodies and how intensely we feel the pain.
[1:02:15] REBECCA: that’s really interesting because I know with SIBO it can be such a vicious cycle that we feel pain. You get anxious and you can go into a very negative emotional state. You then feel more pain. It’s very much I can see how that could be very interlinked and looping and making it worst.
Have you got any techniques that you use with yourself or perhaps even in your work that can help people kind of move out of that state?
[1:02:4] DANIELA: I think the biggest thing that can help people; it also depends where they are though. I mean if they are newly diagnosed, they are overwhelmed and stress, then this is really…. This might be a little bit too much to even consider right now. but if they feel that they are in a place where they are more able to feel calm within themselves and have the ability to… or easily problem solve, there thinking isn’t foggy or anything like that then you know if they can just practice breathing techniques, I mean that is a good place to start.
At first it can be overwhelming because people are just trying to survive and get through the day and so to add on something else right at the initial onset of the journey for them, this might not be in the real house at the moment. But maybe once they have kind of gotten used to their new routine or the changes that they have had to implement, then adding this in would be a good time for them to kind of consider this. But just deep breathing. That’s where you kind of imagine your belly is a balloon.
So as you inhale, that balloon expands out and as you exhale it goes in more towards the spine. And I actually have a guided imagery audio. It’s free for people to download on my website. You sign up for it, my newsletter. I send an email out once a month and so in the email chain that goes out at the series for free when you confirm your email, you also get to download that audio that i put together. And it’s this guided meditation where I walk you through breathing in and out. I have the ocean in the background. Actually I went to the beach and recorded the waves. And just making some kind of a regular practice.
If you can do it every day, that really can do wonders in calming down the nervous system and calming down the body. And when we are able to do that deep belly breathing, just bring that oxygen in relaxes the muscles, calms the mind. It has this wonderful, calming effect in the mind and clearing where you are able to think more critically. You feel less triggered by things that might be a nuisance. Maybe you find yourself not feeling as reactive. All of those things over time if you make this a practice, I hear it said that if you stick to some kind of relaxation practice and meditative practice, guided imagery for like 21 days, something like that. If that is something you feel you can do that can help lead to more impactful positive changes and how you feel within yourself and how you feel emotionally.
And also just by doing that deep breathing, you are calming down the nervous system and when you do that and your muscles are more relaxed, you will also feel less pain. Because when we are in pain our bodies are tense. There is this rigidity in our body. But if we are able to relax those muscles just by getting that oxygen in relaxing those muscles, that can really help get us to a place where we are not feeling as intensive pain.
So that’s like I think the first thing people can do. And there are so many apps out there as well to try. It’s just a matter of finding something that works for you. And meditation or guided imagery it doesn’t have to be this daunting intimidating thing. The recording I have is only I think 6 or 8 minutes long. That’s it. It’s not like this whole time consuming thing. It can easily be done.
First thing in the morning or maybe right before you go to bed it kind of help you transition into sleep. So if you can find ways to just calm the body maybe journaling is something. You know writing how you feel or just having a connection with someone to have an outlet to vent. There is the SIBO forum to do that but also having that one on one interaction with someone. Maybe that is a therapist, a support group, in person support group or talking to a friend. All of that helps.
I also like to use tapping which is also called emotional freedom technique. What I like about that is it really does have this benefit in helping calm down our nervous system. If you tap, it’s like tapping down these meridian points in the body. So it is a combination of acupuncture and on the meridians. It’s kind of a combination of those two approaches. But if you were to tap for roughly 30 minutes you could actually reduce the levels of cortisol being produced in your body which is that stress hormone that gets released when you are really stressed.
So tapping not only helps to calm down the nervous system but it also can have a positive impact on our body, our biology. It can turn on and off genes, gene mutations, how genes expressed themselves. I should phrase that differently. It should alter how genes are expressed. This has been well researched. And so I really like that and I use it a lot with my clients mainly to help them work on calming themselves, feeling more grounded. And also in managing pain because a lot of the experiences people go through when they are dealing with an illness or SIBO is a lot of that just kind of continues to reside in the body and it doesn’t get processed. So the frustration and anger that someone is feeling like, “Why can’t I get better? What is wrong with me?” if they are not getting it out in some way it’s kind of just residing in the further and that can further feed into them not feeling well and further contribute to the physical pain or the emotional pain that they are feeling.
So this kind of helps in releasing that and working on these core beliefs that people… we all have certain core beliefs about ourselves and kind of accessing that. So the tapping, tapping people can do in their own in managing pain. But it’s also something you want to be mindful of because it can bring up the core beliefs deeper issues that then should, you should be in a process of being guided in that process from someone who has the training to kind of walk you through that. So I always kind of mention that too.
[1:10:01] REBECCA: Wonderful! And if anybody wants to access or get a link to be able to sign up to your newsletter, I have put the link in the show notes so you can go to that and connect with Daniela. I would love to know how is your health today. You’ve been on such journey. How do you feel today after everything that you’ve been through?
[1:10:25] DANIELA: Honestly I am feeling pretty good these days. I am so happy that I don’t have the distended belly like I used to. That’s a big one. I mean it will happen from time to time but my energy is so much better. Mental clarity is so much better. I am feeling more grounded. Like you know I don’t ever anticipate that I will live life like I did before I got sick. But I am definitely on that path of really moving into this newer evolved version of myself. And being able to be in a much healthier place is so rewarding because it allows me to give back in different ways. So I now have more energy and more stamina to go out and have little talks in the community about chronic illness or pain or whatever is related to that or sleep. And I am now better able to work as a therapist and provide support to people. Whereas before that was a lot harder to accomplish.
So things are looking good.
[1:11:56] REBECCA: that’s awesome. It’s so wonderful to hear and I think that those of us that are feeling a lot better after experiencing chronic illness, life is different. It isn’t the way it used to be. But that’s ok. And I love my new life. And I wouldn’t go back to the way it was. I wanted it to be the way it was when I first started my journey but these days I really love how life has turned out and I look forward to how it will be in the future. And I couldn’t do what I do today if it wasn’t for the fact that i had to go through this journey myself.
So Daniela I would love to thank you for coming on to the healthy gut podcast today. You have just shared such great wisdom and insight from the patient’s perspective around what it is like to live with this condition. If people would like to connect with you what is the best way for them to make contact with you?
[1:12:5] DANIELA: that is a great question. You know they can go to my website and on there I have my email listed. I have my cell number if you are in the United States you can call me. I have. That’s my business number and you know we can connect that way and they can also find me in the SIBO forum because I am one of the admins. So you can always tag me in the group. I tend to be the one who puts the pinned post with the guidelines and the group rules and all that fun stuff. So I am usually pretty easy to connect with in that way. So yeah.
REBECCA: Wonderful. Well thank you so much for coming on the podcast today. It has been an absolute pleasure to have you on the show.
DANIELA: thank you . it has been great talking to you and sharing and spreading awareness.
REBECCA: Thank you
DANIELA: Ok thank you bye bye.