10 Quick Takeaways- NUNM SIBO Symposium 2018

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For the past several years, I have attended the National University of Natural Medicine (NUNM) SIBO Symposium in Portland, Oregon (that’s where I live!).

Each year, I make a point to write a post highlighting some of my key takeaways from the conference. Here are posts from previous years:

The information provided each year has built upon the previous years, so if you are completely new to SIBO, I recommend starting with 2015. The conference actually began in 2014, but I missed that one.

The vibe of the conference also varies from year to year. Featured this year was lots of high-level, complex information about underlying causes of SIBO. It was fascinating and left many (myself included), with as many questions as answers.

Let’s get started on the quick takeaways:

1) Euthyroid sick syndrome can be the cause of thyroid abnormalities in those with SIBO who are following calorie- or carbohydrate-restricted diets.

I first came across the term “euthyroid sick syndrome” during the worst time of my own SIBO journey in 2014. I was eating very few carbohydrates, to reduce my digestive symptoms, but I ended up with extreme fatigue, weight loss, thyroid dysfunction (specifically, low free T3, but normal TSH and T4). Through Google searching, I came to the conclusion that I was experiencing euthyroid sick syndrome, which is a form of malnutrition that the (very smart) body uses to slow down metabolism because it is not getting the nutrition it needs to function optimally. It’s a survival mechanism, and it can be caused by SIBO diets that are too low in carbohydrates and/or calories.

In one of the SIBO talks, the doctor said that in this situation, you should NOT treat the thyroid with thyroid hormones. That completely resonates with my experience. When I was experiencing euthyroid sick syndrome, a doctor prescribed me a T3 supplement and it only made me feel MORE tired.

Talk with your doctor if you think you may be experiencing this condition and consider getting a referral to a nutritionist as well.

2) There is a significant overlap with eating disorders and SIBO.

Approximately 16 percent of individuals with functional gastrointestinal disorders (FGID) report a history of eating disorder behaviors. Up to 57 percent of those with eating disorders meet the criteria for IBS.

While it is clear that there is an overlap between eating disorders and digestive disorders, less is known about the direction of cause and effect. I have heard eating disorder specialists mention that individuals with anorexia nervosa who adopt regular eating patterns may see their constipation improve as the bowels begin getting the right cues that result from eating.

There was also mention of the fact that practitioners should exercise extreme caution regarding dietary restriction in individuals with a history of eating disorder due to the possibility of re-triggering the condition.

(Side note: if you are struggling with an eating disorder, please seek the help of an experienced practitioner. In the Portland metro area, Jamie Lee and Lynae Klinginsmith are registered dietitians with expertise in helping individuals with eating disorders. Another helpful website for finding medical providers who are eating disorder informed is www.credn.org.)

Many individuals think that they are somehow “harming” their bodies by not following a SIBO diet, and that is simply not the case. Instead, they may actually do more harm by engaging in restrictive eating practices that lead to malnutrition. There’s a balance that needs to happen, and it will be different for each individual. This is why it is helpful to obtain individualized dietary advice from an experienced practitioner.

3) Joint hypermobility is found in 40 percent of individuals with fibromyalgia and in 57.8 percent of those with IBS-C.

Dr. Alena Guggenheim gave a talk on Ehlers-Danlos Syndrome, joint hypermobility, and POTS. In this talk, she shared that a significant number of people with fibromyalgia and those with IBS-C have a coinciding issue with joint hypermobility. Although it wasn’t completely clear from the presentation what should be done, the first step is having a diagnosis.

Ehlers Danlos Syndrome (EDS) and related joint hypermobility are genetic issues impacting collagen. They should be considered in individuals with fatigue, pain, gut issues, postural symptoms (such as headaches/dizziness upon standing), allergies/atopy, and autoimmunity.

For more information on EDS, click here.

4) Mast Cell Activation Syndrome (MCAS) effects 1-17 percent of the population.

Mast Cell Activation Syndrome was first reported in 2008 and was believed to be a rare condition. As awareness and research has expanded, however, it appears to be a much more widespread issue than previously thought.

Mast cells are immune cells that release histamine. They are produced in the bone marrow and then go into the blood and tissues. They migrate to sites of inflammation and T cell activity.

Symptoms of MCAS are often multi-systemic (involving many organ systems). They often involve the skin, cardiovascular system, respiratory system, ocular system, and digestive system.

Dr. Weinstock shared a link from his website where you can find a lab requisition form that he uses for diagnosing MCAS.

Although the cause of MCAS is currently unknown, it may be that gut dysbiosis could lead to MCAS. In my experience, this was absolutely the case. I had histamine-related symptoms that went away as my gut healed. Specifically, I had extremely itchy legs that were relieved by taking antihistamines. It wasn’t until my gut health improved significantly that the symptom disappeared completely (my legs haven’t itched in at least a year).

5) Dr. Pimentel’s research associated hydrogen sulfide (H2S) SIBO with the following symptoms:

Diarrhea
Urgency
Pain

Based on his research, Dr. Pimentel believes that individuals with more hydrogen sulfide-producing organisms will experience more diarrhea and those with methane producing organisms will experience more constipation. Both methane producers and hydrogen sulfide producers utilize hydrogen gas for fuel, so they are competing for the same food. The two gases are not mutually exclusive, but they can be.

Several practitioners in the audience were troubled by the fact that Dr. Pimentel’s research showed hydrogen sulfide being associated with diarrhea. They seemed to have patients with a clinical picture consistent with hydrogen sulfide who experienced constipation. I would be very curious to hear from you (hydrogen sulfide SIBO patients) about whether this research resonates for you.

The test to determine whether a SIBO patient has the hydrogen sulfide variety is in development but is not yet commercially available. Look for it in fall 2018. There is currently no research on treatment for hydrogen sulfide SIBO, but having testing available is the first step toward research!

6) The healthier and more diverse the microbiota, the less likely you will have a severe reaction to a parasite encounter.

The presence of healthy, normal bacterial flora in the digestive tract is thought to be protective against colonization by pathogenic microorganisms. Studies have shown that supplementation with certain probiotics (such as Lactobacillus casei [see study]) may help lessen the damage and/or protect against parasitic infection.

You may want to talk with your doctor about probiotic supplementation when traveling to an area where parasitic infection is common.

7) Celiac disease may contribute to cholesterol gallstone formation.

The mechanism is this: Celiac disease can negatively impact a hormone called cholescystokinin (CCK). CCK regulates gallbladder and gastrointestinal motility.

Although not directly SIBO-centric, there are lots of overlaps with these three conditions. SIBO is not uncommon in those with Celiac disease and/or those with gallstones. It is important to thoroughly rule out Celiac disease before adopting a gluten-free diet (which many SIBO diets happen to be).

8) Endometriosis is often associated with digestive symptoms.

In individuals with endometriosis, it can be difficult to distinguish between digestive symptoms that are caused by the disease versus those that are independent of it.

Symptoms of endometriosis include painful periods, pain with ovulation, bloating, diarrhea, constipation, pain with urination or bowel movements, pain with intercourse, and infertility.

A couple of the theories about why endometriosis spreads include: toxic exposure, food sensitivities, and altered gut flora. This definitely begs the chicken and egg question: is the SIBO/digestive condition causing the endometriosis or the other way around? If you experience these conditions, what are your thoughts?

The presenters on this topic were Dr. Stefani Hayes and Dr. Lara Williams (both located in Portland).

9) Oral contraceptives deplete vitamin B12 levels and increase the risk of inflammatory bowel disease (IBD) by 30 percent.

Oral contraceptives are often recommended for painful periods and for those with endometriosis. While oral contraceptives have their place, there are vitamins and minerals that should be considered when taking the Pill. Additionally, patients should ask their doctor about the risks and be able to make an informed decision.

If you are taking oral contraceptives, consider working with a nutritionist to figure out what foods to include to protect against nutrient deficiencies.

10) Thyroid dysfunction in IBS/SIBO is common.

I started this takeaway list discussing the relationship between thyroid dysfunction and restrictive SIBO diets, but it is also the case that thyroid abnormalities can be associated with SIBO unrelated to dietary causes.

What I mean by this is that the prevalence of thyroid dysfunction is high in IBS (about 19 percent of those with IBS-D, 27.8 percent with IBS-C, and 14 percent with IBS-M). And I’m not referring only to people undergoing dietary strategies to treat their symptoms.

This is another chicken and egg scenario. Slow thyroid function may slow gut motility, but slow gut motility may contribute to thyroid dysfunction via a variety of different mechanisms.

As I mentioned previously, the conference presented as many (or more) questions as answers.

I think that continued research on SIBO, its underlying causes, and related conditions will require that patients become in tune with their bodies and share their experiences.

I want to hear YOUR story. If you feel comfortable, please leave a comment below to share your SIBO/IBS/IBD/endometriosis/thyroid/Celiac/gallstone/parasite/etc. story!