As April draws to a close, so does the end of Irritable Bowel Syndrome (IBS) Awareness Month. Today, I thought I would provide some of my thoughts about the state of care for IBS patients: the good, the bad and the ugly. IBS is a massive clinical problem impacting up to 20% of Americans. Many with IBS suffer in silence. Results from an international survey on IBS, revealed individuals with IBS were willing to give up to 25% of their remaining life (this equated to about 15 years), for the chance to be symptom free. This statistic shows the debilitating nature of this condition. IBS patients deserve better. Funding for research for IBS is minimal in the US. We have some work to do to change the landscape of IBS care.
In my private practice, I counsel primarily with patients who have been diagnosed with IBS. Each patient that walks through my office door has their very own story.
IBS is a complex and heterogenous condition. It is defined by a broad range of GI symptoms and is a diagnosis of exclusion. How and why we have acquired these symptoms varies person to person. There are multiple factors and overlapping conditions that likely play a role in each patient’s clinical picture including: family history of IBS, a bout of food poisoning, small intestinal bacterial overgrowth, and even psychological trauma.
A few IBS facts:
- IBS occurs in all age groups, including children and the elderly (but prevalence is lower in those > 50 years of age.)
- The relative risk of IBS is twice as high in individuals with a relative with IBS.
- IBS symptoms can fluctuate over time.
- Fibromyalgia, chronic fatigue syndrome, chronic back pain and migraines often co-exist in the IBS sufferer.
- A subset of IBS patients have increased numbers of mast cells in their intestine (mast cells can activate and release inflammatory chemicals) and are often found near nerve cells in the gut likely contributing to pain.
- Patients with IBS often undergo unnecessary surgeries due to misdiagnosis. The likelihood of having your gall bladder removed is 2-3 times higher in IBS patient than the general public. Hysterectomies and appendectomies are more common in patients with IBS too.
There is no one single proven intervention for all IBS sufferers. Numerous medications have been investigated, and although some work for some patients, many offer little sustainable benefit.
Nutritional interventions have better efficacy than most medications for IBS.
Thanks to Monash University researchers in Melbourne, Australia, we have resounding science to support the use of the low FODMAP diet as a nutritional approach for symptom management. About 70 % of those with IBS will note symptom improvement and management with the low FODMAP diet.
Mark Pimentel’s group at Cedar Sinai in Los Angeles, California has put small intestinal bacterial overgrowth into the mainstream news and identified SIBO as part of the IBS spectrum. Antibiotic therapy is the primary treatment for SIBO, at this time, although Dr. Pimentel’s group is looking at other drug therapies including a drug called, SYN-010, a derivative of lovastatin, (a medication commonly used for cholesterol management), as a novel medication targeted to reduced methane gas produced by microbes living in the gut. Methane gas production is associated with constipation, elevation in blood sugars and greater BMI (higher weight/height).
When food is not processed in our small intestine, it travels onward to feed gut microbes in our colon. Gut microbes ferment the undigested food which helps feed them and lets them grow. We want to feed our gut microbes as they play a role in keeping our immune system functioning, produce vitamin and minerals and are an important factor in keeping us healthy. But, over-feeding some microbes may lead to GI symptoms and health consequences. Let’s talk about fermentation, shall we?
- Over fermentation of carbs & proteins may lead to the production of toxins by gut bacteria. Most of us know that carbs ferment in the intestine, but protein does too!
- Protein ferments too! By-products of protein fermentation includes: hydrogen, methane, carbon dioxide, hydrogen sulfide gases and short-chain fatty acids including branched-chain fatty acids, ammonia, amines and phenolic and indolic compounds; too much of these by-products may negatively impact intestinal health in the long run.
- Short chain fatty acids produced from carbohydrate fermentation in the gut have known health benefits–we know butyrate, for instance, is preferred energy source for colonocytes, regulates satiety and lowers colon cancer risk but is hyper-fermentation or over production of acid detrimental?
What’s on your plate?
- A balanced diet that includes a mix of carbs with fiber, lean protein, a variety of brightly colored produce, healthy fats and rich in plant foods is likely your best bet for gut health and gut microbial balance…but tolerance varies person to person.
- Diet for IBS should be individualized and as balanced and nutritious as symptoms allow.
- Over restricting the diet leads to a decline in quality of life and poor nutritional status.
- Diet often plays a role in IBS symptoms, but often is only a part of the picture. See this post on other overlapping issues.
The complex clinical picture seen in IBS patients could truly benefit from a multidisciplinary and integrated approach. The problem is, most IBS patients do not have the opportunity to work with a team of healthcare providers.
One yet unpublished survey of GI docs revealed that the majority of doctors recommend diet therapy for their IBS patients YET… the vast majority never or only sometimes refer their patients to a dietitian for guidance. What is wrong with this picture!?
IBS patients need a collaborative team approach involving gastroenterologists, dietitians, psychologists, physical therapists, allergists and/or mast cell specialists working together to connect the dots in the complex disorder matrix that the IBS sufferer is alone trying to decipher. Have your heard this quote, “A worried mother does better research than the FBI.” I think the same can be said for the patient with IBS. Noone researchers more than the IBS sufferer. Unfortunately, some information on the Internet is misleading. Not to mention, it is exhausting to research when you don’t feel well. Believe me, I understand! I was the Queen of research when I developed SIBO, after extensive intestinal surgery and my doctors had no idea what was causing my debilitating GI symptoms. The IBS patient needs a medical team that understands the complexities of their illness and is willing to be forward thinking and go the extra mile to learn more when necessary. Here are some tips to prepare for your visit with the gastroenterologist.
Next steps for forward motion:
All patients need access to a knowledgeable GI dietitian to receive evidenced based nutritional interventions and to guide the patient away from over restricting their diet and to help the patient trust food again. We are in need of dietitians specialized in GI nutrition. If you are a dietitian and hope to get some training in this area, consider U. Michigan’s upcoming program this August! U. Michigan GI Nutrition Program Flyer
Another great educational taped nutritional program is available from my Canadian dietitian colleague, Wendy Busse on The Art and Science of Food Hypersensitivity, check it out here. This 2.5 hour program provides a great overview about the spectrum of food intolerances and allergies.
Together, we all need to move the needle forward in IBS clinical care.
There should be open dialogue and collaboration from all health care team members. All team members should have a voice in the patient’s care…including most importantly, the patient.
Dietitians need to work collaboratively with the GI doctor. With a multi-disciplinary approach to IBS occurs, (in my experience) the magic happens for the patient. I am fortunate to have wonderful GI doctors to collaborate with and create a comprehensive health care plan for the patient. I can’t say that all GI doctors have been willing to collaborate, unfortunately.
At an educational level, health professional conferences that cover the topic of IBS should include speakers from ALL disciplines: gastroenterologists in clinical practice and researchers, dietitians, physical therapists, & psychologists. Yes, we all learn from each other! University of North Carolina provides comprehensive meetings for patients and health professionals incorporating all disciplines to share their clinical expertise, an excellent model! We know nutritional interventions help patients with IBS and the registered dietitian should be the health professional sharing their clinical experience at educational conferences. Yet, most gastroenterology conferences do not have dietitians speaking at the conference! This needs to change. We need to view IBS from all perspectives and give our patients the comprehensive care they deserve.
[end of rant]
Drossman, Douglas A. et al. “INTERNATIONAL SURVEY OF PATIENTS WITH IBS: SYMPTOM FEATURES AND THEIR SEVERITY, HEALTH STATUS, TREATMENTS, AND RISK TAKING TO ACHIEVE CLINICAL BENEFIT.” Journal of clinical gastroenterology 43.6 (2009): 541–550. PMC. Web. 26 Apr. 2016.
Canavan, Caroline, Joe West, and Timothy Card. “The Epidemiology of Irritable Bowel Syndrome.” Clinical Epidemiology 6 (2014): 71–80. PMC. Web. 25 Apr. 2016.
21 replies on “IBS Awareness Month“
Thank you Kate for all of the work that you do! So comforting to know that we have you in our corner!
I am fortunate to be able to work with the best patients!
Kate you are awesome! I really hope you will write a book one day that includes your wonderful yet simple low FODMAP recipes. Your site is my IBS Bible 🙂
AWww…thanks Sandy. Good news…there is a book underway. 🙂 And…the recipes are AWESOME!!!
I’m one of the lucky ones ..
My nutritionist is Kate Scarlata ..
It doesn’t get any better !
Her incredible expertise has gotten me through the last few years since being diagnosed with SIBO !
I wish everyone with IBS/SIBO could read this post ..
It’s so so amazing .. ! !
It’s incredibly helpful to know we are not alone in this journey ..
On bad days I may forget …
I’m so tempted to send copies to family and friends as most just don’t understand ..
Kate Scarlata …
My heartfelt thanks to you for this post and for all you do each and everyday ! !
You are one in a million, Esther. I am humbled and blessed to be able to do the work I do. xx
“A worried mother does better research than the FBI.” I hadn’t heard that before! I’m one of those worried mothers who’s daughter was diagnosed with Celiac this year. We also see a Naturopath who educated us on SIBO. Days and hours of research, and your blog/website consistently rise to the top of the pack. Thank you for publishing this knowledge. I couldn’t agree more with your push for more education in the GI community!!
It is so true, right Stephanie? Mom’s want nothing more than their children to be happy and healthy. We are all in this together….we all need to push for more awareness in the GI community to help ourselves…and those behind us…struggling to find their way.
Kate, this is such a nice post to create awareness. IBS really is poorly understood and referrals RDs from a GI doctors can be non-existant in some facilities. I would love to specialize in digestive health in the future because I know first-hand how much it impacts quality of life!
Thank you Megan!
Beth Rosen, MS, RD, CDN
Excellent post Kate! As an RD, I learn so much from the research you post. I appreciate all of the links and references – thank you!
Thanks Beth!! I appreciate your comment! Kate
I was given a diagnosis of Fructose Intolerance…yes they said Intolerance, and given a hand out of foods to eat and avoid. I was referred to a nutritionist. I went to see her and she had no idea how to treat someone with Fructose Malabsorption. I was told to go by the handout I was given by the doctor and pretty much sent on my way, unless I wanted to work on losing weight. I figured I could do that on my own as soon as my GI problems settled down, so I didn’t go back. The diet I was given was not helpful at all. I remember it saying asparagus was a well tolerated vegetable. That I could have shallots and leaks….there was so much on there that made me sick I didn’t get better at all.
Until I started to do my own research. Then I found the research that was going on in Australia.
Things started to change. But I was really at a loss about a lot. just having a list of dos and don’ts was not enough. Especially when so many things say…to your tolerance.
until i found your 21 day Tummy books I was so sick. Suddenly I felt better. I lost 45 lbs. I’m introducing foods.
I will say, I tried to find a dietitian, nutritionist, anyone who could help me after seeing the initial nutritionist and when I found out about FODMAPs. I could not find one that had any idea what I was talking about. and I live in a fairly big city, I can’t imagine how hard this much be for people in more rural areas.
it’s a shame there aren’t more dietitians who know about this. I wish all had to go through training for it as a continuing education.
thank you for all your help.
I am so happy I stumbled over your page. Just happened to me – after 20 years of suffering, yet another doctor gives me an endless list of all the things I am not supposed to eat and leaves me alone with it. Unfortunately, FODMAP is only slowly coming to Europe and has not yet properly seeped into GI consultation. I also have the impression, that most doctors still prefer to cut something out of your body or give you medication instead of finding a solution you can live with every day. Well at least in my experience.
Will certainly follow your blog!
Glad you stumbled onto my blog, welcome, Bree!
What is the difference between the low FODMAP diet and the low residue diet? I was just diagnosed with IBS and my doctor put me on the low residue diet which basically cuts out eating mostly all fruits and vegetables. This has been hard for me to adjust to since I used to eat alot of fruits and veggies. I don’t see any difference now that I cut those foods out of my diet. Is the low FODMAP diet similar to the low residue diet?
Zahira, the low residue diet is basically a low fiber diet–where insoluble fibers are removed along with other difficult to digest food particles. It is vastly different from the low FODMAP diet. Would contact your doctor and get a better understanding of why he/she put you on a low residue diet. In patients with a narrowing in the intestine, reducing residues are encouraged to avoid an intestinal blockage. You want to have open dialogue with your doctor to ensure you are on the proper diet AND WHY! Always ask questions!
This was very helpful for me, thank you! I suffer from IBS-C but my Gastro isn’t very helpful at all and she never even brought the possibility ofSIBO up.. I have thought about getting a nutritionist and this post highlighted the significance of having one. I’m trying to do the low fodmap diet on my own & it’s very overwhelming & confusing.
Do you know of any Gastro’s or Dietician’s in Adelaide, Australia, or who I can contact in Australia to get a directory of specialists?
Hi Lisa, I have reached out to Monash University to see if they have a list of dietitians knowledgeable in FODMAPs in Adelaide. Will keep you posted. Glad you found the post helpful….that is my goal 🙂
Hi Lisa, I received information from Monash University that there is a group of dietitians in Adelaide doing low FODMAP education. Contact, Stephanie: Stephanie Gaskell firstname.lastname@example.org
I’ve seen this advertised recently. I’m wondering if you’ve heard of it and if you or any of your patients have tried it?
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