Something I have only touched on in previous blog posts is my battle with chronic illness. I was editing a video yesterday from our recent trip to Florida when I noticed I was bearing a rather striking resemblance to Yzma from The Emperor’s New Groove. Over the last few months, I have unintentionally dropped weight, my hair has started thinning again, and those pesky dark circles have reappeared under my eyes. Trust me, this is not the look I am going for.
I was diagnosed with SIBO (Small Intestinal Bacterial Overgrowth) just after we returned home from our trip to Disney World in August 2017. I had been horribly ill for two and a half months and dropped 11 pounds by the time we left for Florida. During that visit, I carefully nit picked at every meal I ate, and I, along with my super supportive husband, skipped meals to help keep my symptoms under control. This was not our most magical vacation.
What is SIBO?
SIBO occurs when too many of the bacteria of the digestive tract colonize the small intestine. Humans are meant to have a large amount of bacteria in the large intestine, but only a small number in the small intestine. These bacteria will digest food and produce hydrogen and/or methane gas. From what I understand, these bacteria can go on a bit of a feeding frenzy, (especially if you have a high carb diet), and cause a number of undesirable symptoms. My main symptoms are:
- Abdominal pain
- Muscle Pain
- Malabsorption (I have a history of low vitamin D and ferritin)
I have also had an elevated ANA since late 2016 with an antibody commonly associated with Sjogrens that is well above normal. My rheumatologist is a believer in leaky gut and suspects my SIBO is playing a role in my body’s creation of antibodies.
How is SIBO Diagnosed?
SIBO is diagnosed through a breath test using a sugar that cannot be digested by humans. In my case, I went through the two hour lactulose breath test. After ingesting a small amount of the sugar, I had to exhale into a test tube at set intervals over a two-hour period. The test itself wasn’t horrible, but as soon as my husband picked me up from the hospital I was struck with horrible abdominal pain which stayed with me for 48 hours.
My lactulose breath test…at least it gave me time to plan our Disney World trip!
For some reason my test results took an extra week to come in. Lucky me! I finally received a call from the hospital three days after we returned home from Disney. The nurse practitioner overseeing my care apologized profusely, and then let know I had a severe case of hydrogen dominate SIBO.
I could tell she felt horrible for delivering what she felt was bad news, but I was just relieved to finally have a label and validation that there was something wrong with me. I know my husband tried to put on a brave face that summer, but I know he had been fearing the worst. I believe one his big motivators for joining the Disney Vacation Club during that trip was so that he could ensure, in his mind, that I would be around to enjoy it with him and our son.
How is SIBO Treated?
That is the big question that both doctors and holistic practitioners are still trying to figure it out. For many people, like me, the underlying cause is unknown. This leaves patients and their doctors in a guessing game as to how to treat the condition.
Dr. Mark Pimentel of Cedars-Sinai is leading the way on SIBO research. I’ve read his book, A New IBS Solution, as well as every article I could find from him (including the scholarly ones meant for the medical community). I’ve also looked into what holistic practitioners have to say on the condition as I believe pharmaceuticals have their place, but should be limited in their use. Dr. Allison Siebecker is considered the leading naturopath in this area of study and has a very informative website.
Since I had success the first time around in keeping my SIBO under control with the Low FODMAP diet, (I went almost six months before I experienced a flare), I like to follow Kate Scarlata. Scarlata is a RDN who also has SIBO. She has kept her SIBO under control through diet, and I highly recommend you read her story if you too suffer from the condition.
I’m going to discuss here how I have treated my SIBO under the supervision of my doctors. Know that if you choose to go the holistic route, your treatment will be slightly different, but still have the same goal: kill off as much of the overgrowth as possible and prevent a relapse through a low carb diet.
Treatment Protocol after Initial Diagnosis
If you are unfamiliar with the Low FODMAP diet, I recommend heading over to Kate Scarlata’s blog before reading on.
- 2 weeks of Xifaxan at 550mg 3 times a day
- Xifaxan is an antibiotic that is poorly absorbed by the intestines, and therefore has less side effects. I do get a little tired while on it.
- Low FODMAP diet for 6 weeks. I also did my best to keep refined sugars out of my diet during this period as well as keep my consumption of grains low. I’ve tried a Paleo style diet in the past, and for me it made me feel worse. I’m also not a huge fan of meat, and mostly keep to chicken and fish.
- During this time I allowed myself only one serving of fruit and cooked all of my vegetables.
- I slowly added in healthy, FODMAP foods in small amounts to my diet. For example, I might allow myself a small serving (1/3 cup) of cooked broccoli once a week.
- I also made sure to keep gluten and lactose out of my diet. I do allow myself some lactose free cheese, but otherwise I do not consume dairy as I believe my lactose intolerance (which took doctors three months to diagnose in 2016) is what lead to my SIBO.
My Relapse and Treatment Protocol
I went almost six months where, with the help of a limited diet, I almost felt like a normal human being again. I even tried seeing a doctor out at Johns Hopkins in hopes that he could offer me more guidance, but all he will do is prescribe the antibiotic when needed. I am still on my own as far as figuring out how to get this under control.
I believe I relapsed here because I enjoyed one too many holiday foods in November and December 2017. I was feeling almost normal, and thought I could got back to some of my old habits.
- I had another round of Xifaxan in mid March 2018. During this time my father was hospitalized, and we lost our cat to cancer. Rocky was, in a way, my therapy pet. He always knew when I felt awful, and he cuddled with me during this flare despite feeling awful himself. March was a horrible time for me, and I believe the stress I endured led to me not getting the SIBO under control this time. It also didn’t help that we were in Disney World when I finished the antibiotic, and while I was very careful about everything I ate, I could not go strictly Low FODMAP immediately after finishing the antibiotic.
I tried to see if I could stay off the antibiotic by strictly controlling my diet, but I was losing more weight and still having some bad days. I had to give the antibiotic another chance. I was once again off to Florida while on Xifaxan! The good thing about the Xifaxan is I can eat almost anything I want while on it, and this allowed me to gain a little bit of weight back (I follow the theory that you are supposed to feed the bacteria, so that the antibiotic is more effective).
While in Universal Studios, I was able to enjoy some foods that I wouldn’t dare touch, but I must say that theme park food gets old real fast. Even my husband was getting tired of it by day two.
- As I am writing this post, I have finished my third round of Xifaxan. My fingers are crossed that it worked this time!
- Tonight I am going to try Iberogast, an herbal prokinetic used to help with motility of the digestive tract. The GI mentioned that I could have an autoimmune process that has slowed my intestinal motility, and Dr. Pimentel believes that an impaired migrating motor complex plays a part in the development of SIBO.
- I’m going Low FODMAP for the next 5-6 months. I can be very strict at home, and we have modified many of my husband’s Korean recipes to meet my needs (which makes him quite happy). I just don’t dare eat his kimchi anymore as foods rich in probiotics now make me ill. 😦
- I’ll try a probiotic again in a few weeks. I have a dairy free probiotic that I tried after my initial diagnosis. I tried it at the child’s dose the last time, but even after a week I was still experience abdominal cramping.
I’m keeping my fingers crossed that I can go a year or longer without having to take the antibiotic. The Air Force will most likely move us next summer. When this occurs, we go into a sort of medical limbo while we change regions. Moves are stressful enough without me being ill. I aim to write a monthly update as to how I’m doing this time around. My fingers are crossed that I can gain a little bit of weight back, and maybe regrow some hair by the next time I write! The muscle pain has already disappeared which didn’t happen in March, so I am optimistic that things will go well this time.
Dr. Allison Siebecker: Siboinfo.com
Kate Scarlata, RDN: For a Digestive Peace of Mind