My SIBO/MCAS Breakthrough

This post discusses my SIBO/MCAS breakthrough. For decades I experienced puzzling gastrointestinal symptoms that persisted despite many treatments for infections, and trying dozens of specialized diets. Finally this year I was diagnosed with SIBO and found some answers and relief!

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What is SIBO?

SIBO stands for small intestinal bacterial overgrowth. SIBO is an imbalance of bacteria in the small intestine. Your gut is colonized by helpful bacteria that help to digest your food. If you have a predominance of unhealthy bacteria that is known as an imbalance. When too many “bad” bacteria are taking up space in your gut they crowd out the “good” bacteria. By definition, SIBO is focused in the small intestine, but in some cases, “bad” bacteria can colonize the entire GI tract, from end to end.

SIBO symptoms can include: 

• abdominal pain 
• bloating 
• constipation 
• diarrhea 
• gas 
• heartburn or reflux
• malnutrition 
• weight loss 

There are different types of SIBO, depending on the gas that the bacteria create: hydrogen, methane, or hydrogen sulfide. You can have any combination of these three types of bacteria dominating your gut microbiome.

In a normal healthy gut there are checks and balances in place to keep unhealthy bacteria from getting the upper hand. These include strong stomach acid, the wavelike movements of peristalsis in the gut that keeps things moving downward, bile from the gallbladder, immunoglobulins in the gut that fight unhealthy bacteria, and a one-way valve between the small and large intestines, that is supposed to keep them separate.

But sometimes despite all these checks and balances the “bad” bacteria get the upper hand.

My SIBO story – concussions and vagus nerve injury

My SIBO story likely began in my teens. I suffered several concussions in my childhood, and it turns out that experiencing a concussion is a key factor in developing SIBO (and actually MCAS). Here’s why:

A concussion is a traumatic event. An injury to the brain is interpreted as an attack on the body which activates the sympathetic “fight or flight” response, which affects vagus nerve activity. This causes digestive functions to slow down, enzyme production to decrease, gut motility to slow, and restricted blood flow to the digestive organs.  

This disruption in digestive function causes increased intestinal permeability, also known as leaky gut. “Studies show that increased gut permeability can happen within hours following a concussion and stay increased for weeks to months.” – source

So, my concussions disrupted my gut motility or the rate at which food travels through the GI tract, and I began developing stomach aches before I entered puberty. Multiple concussions set me up for serious disruption of the gut microbiome.

Concussions are also a key determinant in developing MCAS, and I’ll talk more about that in a future post. See this post on healing vagus nerve injury.

What is MCAS?

Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. MCAS is serious and disabling and people with MCAS experience often significant and debilitating symptoms daily, including anaphylaxis, which can be fatal.

MCAS is often found in combination with other chronic conditions such as Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).

Frequently healthcare providers do not know about MCAS, and the tests for MCAS are problematic because they are not uniformly reliable. MCAS can be difficult to manage. Treatments include blocking mast cell mediators with anti-histamines and mast cell stabilizers, as well as avoiding triggers.

Check out this post on how to manage MCAS.

Antibiotic use and SIBO

Even though SIBO is a chronic bacterial overgrowth that can be treated with antibiotics, antibiotics can also cause SIBO. Antibiotic exposure kills off both harmful and helpful bacteria, upsetting the balance of the microbiome. When “good” bacteria are killed, harmful bacteria can proliferate and overgrow, increasing the risk of developing SIBO. Additionally, chronic exposure to antibiotics can lead to drug-resistant bacteria, making SIBO, and other infections, more difficult to treat

I had bad acne starting at age 11 and began taking antibiotics like Tetracycline for my acne by my early teens.

I also grew up in the generation before doctors realized that antibiotics can become resistant to bacteria. So, whenever I got a sore throat as a child my mom would rush me into the clinic for a penicillin injection, whether or not I actually had strep throat.

By my late teens, my gut motility had markedly slowed and I began to experience difficulty with constipation.

Stress and SIBO

Stress also interferes with many aspects of digestion. When we are under stress, our body produces less stomach acid, leading to reduced bile secretion and enzyme production, both of which can contribute to SIBO. Additionally, stress can weaken the immune system, allowing for overgrowth of bad bacteria or an infection that may require antibiotics, further increasing the risk of developing SIBO. Stress also interferes with gut motility, slowing the movement of food, and bacteria, through the gut. Reduced gut motility predisposes us to develop SIBO. – source

As I entered my college years my stress level ramped up with papers to write, exams to take, and worries about the future. And by the time I was finishing college, I had developed anxiety. So, the combination of multiple concussions, antibiotic over-usage, and stress were major contributing factors to my developing SIBO.

Infection and SIBO

In my junior year of college, I also contracted Lyme Disease, which is also implicated in SIBO.

“Likely the most common gastrointestinal disorder associated with Lyme disease and other tickborne infections is small intestinal bacterial overgrowth (SIBO). It is estimated 60-70% of people with Lyme disease have SIBO.” – source

At the time I was attending college in Vermont, an area that came to be known as a hotbed for tick-borne infections. But then little was known about Lyme Disease, and it was considered extremely rare. When I developed a fever, joint pain, and severe anxiety and depression overnight, nobody suggested it could be Lyme Disease. Though my chronic antibiotic usage for acne at that time may have had a positive effect on my Lyme Disease, it was not being dosed at therapeutic levels for treating Lyme Disease, and it likely had little positive effect.

My Lyme Disease went untreated for two decades until I finally saw a functional provider who understood tickborne illnesses, and was adept at treating them. See this post on infectious triggers of MCAS.

Hormonal causes of SIBO

So starting in childhood my body was primed to develop SIBO with repeated concussions and antibiotic use. The extra stress that began when I was in college didn’t help the situation, and then untreated tickborne illnesses (it turned out to be several) further set the stage for me to develop SIBO. I experienced decades of constipation, gas, and gastrointestinal discomfort. In college, I also began using oral birth control pills, which is another risk factor for SIBO.

It is believed that birth control can lead to leaky gut, yeast overgrowth (candida), decreased microbial diversity, and altered gut motility, which can lead to SIBO. – source

Autoimmunity

Finally, in my case, autoimmunity is yet another possible factor in developing SIBO. In addition to Lyme Disease, I developed a host of other chronic infections over the two decades my Lyme Disease went untreated including Ehrlichia, Epstein Barr Virus, Bartonella, Babesia, herpes zoster virus, candida overgrowth, intestinal parasites, and Mycoplasma pneumonia. And these untreated conditions led to celiac disease-type symptoms, thyroid issues, arthritis, abnormal liver enzyme levels, chronic pain, and mast cell activation syndrome.

I learned that “SIBO is common in many autoimmune diseases, such as IBD, scleroderma, celiac disease, and Hashimoto’s hypothyroidism, although the exact nature of these associations isn’t fully known.” – source

I also learned that “those who have had food poisoning may be more susceptible to an autoimmune response in the small intestine.” – source

Though I didn’t have a diagnosed autoimmune disorder I definitely had food poisoning a couple of times, and with the way my symptoms were worsening, it appeared that I was heading toward autoimmunity, and fast!

Why don’t doctors know about SIBO?

So with the extreme likelihood that I had SIBO, possibly as early as my late teens, why didn’t any of the dozens of doctors I saw figure it out?

It turns out that SIBO is extremely underdiagnosed.

“SIBO is a notoriously underdiagnosed condition, despite research suggesting it may be a chief cause of irritable bowel syndrome (IBS). Approximately 11% of people worldwide suffer from IBS … When SIBO came along, it really offered some cures and solutions,” says Dr. Nirala Jacobi, a naturopathic doctor whose online platform “The SIBO Doctor” offers courses on the disorder for both practitioners and patients.

Unfortunately, though, SIBO is a prevalent diagnosis, “I still hear from patients every day that they go to the gastroenterologist and it’s still not being recognized,” says Jacobi. – source

Testing for SIBO

So, how do you diagnose SIBO?

The best way to determine if you have SIBO and to determine which bacterial overgrowth you have is to do a breath test. But part of the problem is that most doctors only know about the hydrogen breath test. There are three gasses produced by bacterial overgrowth — hydrogen, methane, and hydrogen sulfide. If you only test for hydrogen you can miss two other major contributors to SIBO.

My daughter, who also has SIBO, was seen at a prominent gastroenterology clinic and they only did the hydrogen test. Because her hydrogen levels were low they did not diagnose SIBO. But when she saw a functional provider who not only looked at two gasses in their breath testing but also looked at the relationship between the two, she received a positive SIBO diagnosis.

I did the breath test with the same functional provider, and my levels were off the charts! Finally, I understood the decades of GI discomfort I had experienced. After having SIBO for so long it had become my “normal,” and I was astonished to read about all the SIBO symptoms I had.

The bucket theory

The bucket theory offers a helpful analogy for understanding symptom reactions with MCAS.

Think of your body as an empty bucket that you want to keep from overflowing. Different foods and activities fill your histamine bucket at different speeds but they combine to form the total level of histamine in your body (how full your bucket is). A fuller bucket means you have more histamine symptoms. When you manage triggers, reduce exposure to known triggers, and take medications and supplements to reduce histamine, you can manage the level of your bucket.

Know your typical symptom progression

Knowing your symptom progression in a symptom flare is the key to developing your own rescue plan. In this post, I discuss how to determine your own symptom progression. Once you know what typically happens in your symptom progression you can design a rescue plan to address those symptoms.

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Types of SIBO

There are three types of “bad” bacteria in SIBO that produces gas. The gas present determines which type of SIBO you have, and helps your doctor determine the proper treatment.

The SIBO/MCAS connection

After researching MCAS and finally receiving a SIBO diagnosis I began to understand the connection between the two conditions. I learned that patients with SIBO typically experience issues like diarrhea, constipation, gas, bloating, nausea, and malabsorption. Since there is an abundance of mast cells in the intestines, when they are over-activated they can signal for more mast cells to proliferate there. So, SIBO can be a significant trigger and driver of MCAS. – source

I also learned that MCAS can trigger SIBO:

“SIBO with hydrogen and methane plateau patterns are common in MCAS subjects. MCAS could cause SIBO due to alterations in the GI immune system or altered motility by the local release of MC mediators. Antibiotic therapy appears to improve GI symptoms in MCAS patients.” – source

A word about mold

Yet another trigger for SIBO that I haven’t mentioned yet is toxic mold exposure. Mold toxicity is one of the major causes of MCAS, and mold toxicity upsets the bacterial balance in the gut. If you have toxic mold exposure your body tries to detox mold by dumping it into the gut. So if you are trying to heal MCAS or SIBO you won’t get any traction because the mold toxins are continuously doing damage to your gut. In fact, fungal overgrowth in the gut can cause a problem called SIFO, or small intestinal fungal overgrowth. So, if you have experienced toxic mold exposure, and you have distressing gut symptoms, the first place to address is mold. You do that by eliminating the source of mold exposure and ridding your body of it. That is a whole topic in itself that is addressed in this post.

Treating SIBO

Treatment for SIBO depends on which gasses are being produced, the levels of gas being produced in your GI tract, your symptoms, and your other diagnoses. As the chart above shows, there is some overlap in the typical symptoms and suggested treatments for the three types of SIBO. In my case I have both hydrogen and methane gasses being produced by bacterial overgrowth. The level of gasses measured in my breath test indicated that the “bad” bacteria had colonized my entire GI tract, including, likely, the esophagus.

My treatment began with switching from the Keto diet to the Specific Carbohydrate Diet (SCD). A week later I started a one-month herbal protocol with Berberine, Neem, and Candibactin AR. I experienced several rounds of die-off as the unhelpful bacteria were killed off causing Herxheimer reactions. After the one-month herbal treatment I began one month of Rifaximin, an antibiotic typically prescribed for traveler’s diarrhea. Along with the antibiotics I took several probiotics, including Saccharomyces Bulardi, and a broad-spectrum spore-based probiotic. I also took Tributyrin-X™, a source of short-chain fatty acids that acts as a “postbiotic” to heal my leaky gut and assist with gut motility.

I’m still in the midst of the antibiotic treatment, but I have already noticed improved bowel function, less gas, and bloating, and I haven’t had any reflux in weeks. I will update this post as I finish the treatment and share the results.

Following antibiotic treatment, I will be re-doing the breath test, and trying to reintroduce problematic foods. The post-treatment protocol also includes adding Betaine HCL, the acid in stomach acid, to help keep the bacterial balance in check.

Though antibiotic treatment alone for SIBO only has around a 30% success rate, I’m hopeful that the multi-pronged approach my functional provider is taking will do the trick. And I will still likely need to watch for the symptoms of bad bacterial overgrowth recurring.

The SIBO diet

You may hear about the “SIBO diet”, but there really isn’t one tried and true diet to address SIBO. Some practitioners advocate starving the bad bacteria by eating only non-fermentable foods with the Specific Carbohydrate Diet (SCD). Unfortunately the SCD alone is not very effective at addressing SIBO. Other practitioners say that if you are treating SIBO with herbs and antibiotics you can just eat a regular diet. I’m not sure which path is more sound. I took a middle path and started with the SCD — which is extremely limited, on top of a low-histamine diet I was already doing. And guess what? I couldn’t do it for more than a week. I felt extremely deprived, was frequently “hangry,” and it didn’t feel helpful.

After that, I switched to a lower histamine, low FODMAP diet, which was much more tolerable. For me to be successful with a healing protocol I need to acknowledge the emotional side of eating. For me, that means not being in a state of deprivation.

The biggest takeaway from my research on the SIBO diet is that any dietary restriction is meant to be short-term, not forever. If you can do a restricted diet, then great. If not, don’t sweat it. The best diet for you will be one that helps you feel good, supports you to heal, and is the least restrictive.

Check out my post on the best diet for MCAS.

Consult your medical provider

I am not a medical provider and I only offer the specifics of my treatment here to give you an idea of how SIBO treatment can progress. Keep in mind that I do not dispense medical advice or prescribe the use of any technique as a form of treatment for physical, emotional, or medical problems either directly or indirectly. The material on this website does not constitute medical advice. This website is for information purposes only. The health-related information is not intended to be a substitute for professional medical advice, diagnosis, cure, or treatment. If you intend to follow any of the exercises or suggestions on this website do so only under the supervision of a trained professional. Always seek advice from your medical doctor. I am NOT RESPONSIBLE NOR LIABLE FOR ANY ADVICE, COURSE OF TREATMENT, DIAGNOSIS, OR ANY OTHER INFORMATION, SERVICES, OR PRODUCTS THAT YOU OBTAIN THROUGH THIS WEB SITE.