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3 Important Things I Learned about IBS from Digestive Disease Week 2019

Jeffrey Roberts

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Jeffrey Roberts

3 Important Things I Learned about IBS from Digestive Disease Week 2019

by Jeffrey Roberts MS, BSc, Founder IBS Patient Support Group

July 2, 2019


I have suffered with Irritable Bowel Syndrome (IBS) for over 25 years. In an effort to learn as much as I can about the condition and how to treat it, I attend conferences on digestive health. The largest such conference is Digestive Disease Week. I’ve been to this conference a number of times since 2001, including this year’s event in San Diego, California in May.

Here are three important things that I learned as an IBS patient attending DDW.

1. Physician non-prescription recommendations for treating IBS

According to Dr. Vikram Rangan from Beth Israel Deaconess Medical Center, who utilized the IBS in America survey commissioned by the American Gastroenterological Association (AGA) in September and October of 2015, although non-prescription treatments are most commonly used, satisfaction with existing treatments is low from both the IBS sufferers’ perspective and physicians recommending them. 

The most commonly recommended non-prescription treatments were fiber and laxatives for constipation-predominant IBS (IBS-C) patients, followed by probiotics, and peppermint oil. For diarrhea-predominant IBS (IBS-D) patients, fiber and loperamide (Imodium) were the most commonly recommended treatments, followed by bismuth (Pepto Bismol), antacids and peppermint oil. Dr. Rangan noted that antispasmodics are the most common prescription-based treatment for IBS-D. The US does not have a non-prescription antispasmodic treatment available, but most other countries do, so the results outside of the US for the most common non-prescription treatments for IBS-D would be different.

Dr. Rangan reported that in general, satisfaction with non-prescription treatments for IBS-C and IBS-D is considerably lower than prescription treatments. Adding fiber to your diet was the most common physician recommended non-prescription treatment for both IBS-C and IBS-D.

Dr. Rangan also reported that non-pharmacological therapies are different than non-prescription treatments and that the most commonly non-prescription treatment by physicians are probiotics, followed by the low FODMAP diet and/or other dietary modifications.

This is important because overall, there appears to be unmet needs for effective non-prescription treatments for IBS patients. While some physicians continue to direct IBS sufferers in this direction, you should know that you may find a non-prescription treatment lacking in the ability to reduce your symptoms and you might have to continue to work with your physician to find a more suitable treatment plan.

2. Small Intestinal Bacterial Overgrowth (SIBO); Fact and Fiction

The condition of Small Intestinal Bacterial Overgrowth (SIBO) has been known for quite some time; however, it was Dr. Mark Pimentel from Cedar-Sinai Medical Center in Los Angeles who raised the profile of it almost 15 years ago with his book “A New IBS Solution”. Dr. Pimentel’s research illustrated that when there is bacteria in the small bowel, where it generally is not supposed to be in healthy people, it contributes to IBS-like symptoms. The presentation was focused on the question, Could it (SIBO) be the cause for IBS?

Dr. William Chey from the University of Michigan delivered the presentation entitled “SIBO: Fact and Fiction” where he described how culturing bacteria by drawing it out from the small bowel is “an imperfect gold standard”. This implies that it’s the best way to get a bacteria sample; however, it’s not perfect partly because of contamination, and in general the difficulty of gaining access to the small intestine. Breath testing is used in its place. Breath testing looks for traces of methane or hydrogen after a patient digests a “mixture” given to them by a clinician. Dr. Chey indicated that nobody really understands what is the right “mixture” to get the best breath traces of methane or hydrogen, though he indicated that part of Dr. Pimentel’s current research has emerging testing practices which are shedding light on the best testing techniques.

If a patient has a “positive” breath test, ie: high methane or hydrogen breath readings, the usual treatment is a short treatment with an antibiotic. Rifaximin (Xifaxan) is the most common antibiotic used. Regardless of the antibiotic used, 50% of patients will usually have another “positive” breath test within 9 months after treatment and a return of their IBS  symptoms. Probiotics seem to have little effect on SIBO whereas, herbal treatments seem to offer the same results as Rifaximin. More research is needed to understand why herbal treatments offer the same results as Rifaximin.

Dr. Chey said that SIBO presents a wide spectrum of symptoms. We do not know whether SIBO causes IBS; however, as more research is involved in gut microbiota (bacterial) changes, perhaps the changes in the gut flora may lead to IBS symptoms. Antibiotics offer short term benefits to those with SIBO and a subset of IBS sufferers. This is important because at this time, SIBO is not thought to be the direct cause of IBS. That’s not to say that if you are diagnosed with SIBO and are treated and you find that your IBS symptoms got better, it might mean that you actually have SIBO rather than IBS or that SIBO was giving you IBS-like symptoms. Nonetheless, this isn’t the end of the story with SIBO. Research continues in this very interesting area. Relief is relief and as an IBS patient, I’ll take relief anyway that I can find it.

3. Could it be Congenital Sucrase-Isomaltase (CSID) instead of IBS-D?

Congenital Sucrase-Isomaltase (CSID) is a disorder that I was not aware of until the presentations I attended at DDW. CSID affects a person’s ability to digest certain sugars. People with this condition lack the ability to breakdown the sugars sucrose and maltose, two simple sugars found in fruits and grains respectively and in more complex sugars like carbohydrates. Sucrose is normally broken down into glucose and fructose and maltose is normally broken down into two glucose molecules. CSID is usually diagnosed in infants when they first start to eat solid foods, namely fruits, juices and grains. A child with CSID will have stomach cramps, bloating, excess gas and diarrhea. Pediatricians regularly consider this if an infant has these symptoms; however, older children and adults who see their doctors for similar symptoms are not considered to have CSID because doctors do not consider this at later ages, perhaps believing that it would have been caught earlier.

CSID is caused by mutations in a gene. The gene provides instructions for producing the enzyme sucrase-isomaltase which is responsible for breaking down sucrose and maltose. Using a sucrase enzyme as a supplement, similar to how lactose intolerant people use the lactase enzyme to digest lactose, which is found in milk, allows people with CSID to digest sucrose and maltose found in foods. Sucrase enzyme is available by prescription.

Dr. William Chey from the University of Michigan delivered a talk where he feels that CSID may be under-recognized in adults because it is not something that an adult gastroenterologist considers. He said, “it is not something that is taught in medical training for gastroenterologists so it’s not on their radar.” He feels that CSID symptoms are similar to diarrhea-predominant IBS (IBS-D). Dr. Chey described a person with CSID as someone who has high loose-stool frequency, a family history with IBS-D-like symptoms, and carbohydrate / sweet food avoidance and may report that very sugary desserts (birthday cake) cause more severe symptoms. They often have a low body mass index (BMI) and are skinny.

Research for CSID and IBS indicates that CSID is found more often in IBS patients than healthy people. In fact, IBS patients have nearly two times higher odds of carrying a CSID mutation than people who show no CSID symptoms. CSID could be found in as much as 8% of the population. To put that into perspective, it is estimated that slightly less than 1% of people have celiac disease, the inability to digest wheat, and 10-15% of people have IBS.

The gold-standard for testing for CSID is to biopsy cells from within the small bowel; however, there are other ways to test. One alternative is a carbon-13 sucrose breath test, which has a high degree of accuracy. A sample can be taken at home and sent for testing.

Dr. Chey performed a small study that looked at IBS patients who failed to respond from using the low FODMAP diet to manage their IBS symptoms. The results suggested that those who failed should be considered for CSID.

Congenital Sucrase-Isomaltase (CSID) is worthy of exploring for those that continue to have IBS symptoms that do not respond to the usual treatments. I personally intend to investigate CSID as an explanation for my IBS symptoms as my symptoms seem to fit the profile. CSID is a perfect example why patients with digestive illness should not be diagnosing themselves, because there are many illnesses with similar symptoms, like CSID and IBS-D. Working with a knowledgeable physician, who is open to explore different options like CSID, is our best way to being diagnosed and treated correctly.


Digestive Disease Week 2019, Presentation 857, Medication Utilization and Satisfaction in Irritable Bowel Syndrome: Insight from the IBS in America Survey,Vikram Rangan, Raxitkumar Patel, Judy Nee, Johanna Iturrino-Moreda, Courtney McMahon, Sarah Ballou, Prashant Singh, Anthony Lembo

Digestive Disease Week 2019, Presentation 2110, Sp80 Small Intestine Bacterial Overgrowth: Fact and Fiction, William D. Chey University of Michigan Health System, Dept of Internal Med, GI Division

Glob Adv Health Med, 2014 May;3(3):16-24. doi: 10.7453/gahmj.2014.099 Herbal therapy is equivalent to rifaximin for the treatment of small intestinal bacterial overgrowth, Chedid V, Dhalla S, Clarke JO, Roland BC, Dunbar KB, Koh J, Justino E, Tomakin E, Mullin Ge.

Digestive Disease Week 2019, Presentation 347, Is Sucrose the Sixth FODMAP in a subset of Patient with Irritable Bowel Syndrome with Diarrhea and Sucrase Isomaltase Deficiency?, Shanti L. Eswaran, Tenghao zheng, Mauro D'Amato, William D. Chey

Could It be CSID: Is CSID an Under-Recognized Patient Population with Unresolved IBS-D Symptoms?, William D. Chey, delivered May 20, 2019, sponsored by QOL Medical, endorsed by GI Health Foundation

US National Library of Medicine, NIH, Congenital sucrase-isomaltase deficiency, https://ghr.nlm.nih.gov/condition/congenital-sucrase-isomaltase-deficiency on May 31, 2019


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