Things I Have Tried for GI Symptoms

I have had mild GI symptoms that have waxed and waned throughout the course of POTS and ME. Here is a rundown of what I have tried and how these interventions have worked. Spoiler alert, none of these were a success, but since everyone responds differently, I thought they were worth sharing.

Gastroenterologist

At the end of last year, I was discussing some GI things with my nutritionist and she suggested that I rule out SIBO as it is very common among POTS patients. After an eternity of Google deep-diving, I finally found a Gastroenterologist that deals with SIBO.

Early in 2021, I saw the Gastroenterologist. As I mentioned in a different post, it was a strange and creepy encounter. I didn’t follow up with this doctor, but I did follow his recommendations.

GI’s Recommendations

The GI told me that classical cases of SIBO come with a fever and severe issues. He thought that since my issues were mild and chronic that it was most likely not SIBO. He also feels that SIBO diagnoses get thrown around rather flippantly. It was interesting to hear his take as I had only heard from the school of thought that thinks it is under-diagnosed. There is clearly not a consensus on SIBO at this time.

The GI told me that I most likely have IBS and food intolerances. His recommendations were to: start a probiotic, take the antibiotic rifaximin for 2 weeks, do a stool test, and keep a food journal. I felt pretty underwhelmed by an IBS diagnosis after listening to Dr. Laura Pace and others at the Dysautonomia International conference refer to it as a lazy, BS diagnosis. However, that’s what I was offered, so I figured I would do what I could with that information.

Rifaximin

Rifaximin is FDA approved for IBS-D. It is also the same medication prescribed for SIBO. Rifaximin is specific to the gut. This did not help at all. It actually gave me a bad POTS flare, too. Antibiotics do me dirty like that from time to time.

Probiotic

I hadn’t been on a probiotic in a while, but I went back on one to follow the GI’s recommendations. My nutritionist told me this may be a good idea as well if I don’t like fermented foods. At that time I had only tried sauerkraut, which took every shred of self control I possess to swallow at my in-laws Thanksgiving.

My nutritionist thinks probiotics can be tricky on whether they are worth it or not. However, she does feel comfortable in recommending either Visbiome or VSL#3, because they have the most robust studies. I tried VSL#3. I didn’t notice any improvement, so I stopped taking it after a few months. VSL#3 is VERY expensive, so it’s not worth keeping around without noticeable improvement.

Elimination diet

I didn’t food journal this year, but based of previous observations and hunches, I tailored an elimination diet that lasted about three weeks. This diet reduced GI symptoms around 30-40%.

This ended up being a failed experiment, though. The diet was too restrictive to be sustainable, and by the time I was done with the elimination part, I was too burned out to do a proper reintroduction. If I were to try this again, I would most likely do it under the supervision of a professional to avoid this burn out.

Nerva Hypnotherapy

After my elimination diet fail, creepy Facebook algorithms read my mind and targeted me with an ad for Nerva Hypnotherapy. I was impressed by the small study demonstrating that gut-directed hypnotherapy is as effective as a low-FODMAP diet for IBS. So, I gave it a whirl.

Nerva uses hypnotherapy sessions, deep breathing, and learning to re-educate the mind and body to function as it should. The sessions were very enjoyable and calming (although they felt repetitive towards the end of the 6 weeks). Sadly, I did not notice any improvement in GI symptoms from using the app. No regrets, though. As I’ve said before, you miss 100% of the shots you don’t take (credit to Wayne Gretzky and Michael Scott).

Sugar elimination

I made it 5 days. That is all.

Fermented food and drink

I read Cort’s article at Health Rising about the impact of a high fermented food diet on the gut microbiome and it inspired me to try fermented food/drink for multiple reasons. First, I have been on three courses of antibiotics this summer alone (UTI’s from a stuck kidney stone), so I thought this would be a good idea. Second, for the impact it could potentially have on the POTS/ME. And finally to see if it could impact GI symptoms by virtue of improving the gut microbiome.

I trialed fermented food/drink for about two months. During the first month, I worked up to drinking 4 ounces of coconut kefir by Fermenting Fairy and two tablespoons of their fermented applesauce each day. I don’t enjoy the taste of coconut kefir, but the applesauce has grown on me. I like both the ginger and cinnamon applesauce.

During the second month, I drank 4 ounces of GTS Kombucha per day (Gingerade is my favorite) and two tablespoons of the Fermenting Fairy applesauce. I switched to kombucha because it’s cheaper. Two bottles of the coconut kefir exploded in my refrigerator (refrigerator’s fault) and that waste pushed me to find something more economical.

A note on one of the GTS kombucha flavors- I have tried several and none are gross. However, I tried one called “Living in Gratitude”, which is their fall edition. My brain goes WTF every time I drink it and I have to know if anyone else has experienced this. Let me know, because it’s cracking me up. It’s like they mixed pickle juice with pumpkin spice and a splash of apple cider. That makes it sound truly repugnant, but it’s not bad.

Here are other options for fermented foods and drinks:

• Kimchi
• Sauerkraut
• Dairy kefir
• Tempeh
• Miso
• Yogurt

After this two month trial of fermented food and drink, I did not notice any changes in my GI or other physical health aspects. My mental health improved during this time, but I don’t know if it was the fermented food and drink as there were other variables involved.

I plan to discontinue the fermented food/drink and see how things go. I see myself using fermented food/drink in periodic phases when it feels right intuitively. In addition to that, I will return to this well when I have to do a course of antibiotics.

Next Steps

Since my GI symptoms do not disrupt my life and are mild, I am most interested in low-key options. Here are things I’m curious about trying in the future:

• Smaller/more frequent meals. This is recommended for people with POTS anyway due to blood distribution during digestion.
• Manual physical therapy/bodywork modalities. These claim to aid in GI issues.

What are your experiences with GI issues in chronic illness? What have you tried and what have been the results?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.