What is IBD?
IBD stands for “inflammatory bowel disease” and is the umbrella term for disorders that involve chronic inflammation of the digestive tract. The two most common forms of IBD are ulcerative colitis and Crohn’s disease. The key difference between these two is that ulcerative colitis is limited to the lining of the colon (also known as the large intestine) and rectum while Crohn’s disease can involve the deeper layers and any part of the digestive tract.
Is IBD the same thing as IBS?
This is a common confusion since both conditions involve the digestive system and the letter “B” in both initialisms stands for “bowel.” But that is where the similarities end!
IBD = inflammatory bowel disease
IBS = irritable bowel syndrome
While everyone who has experienced IBS knows that it can have significant impact on one’s quality of life when not well managed, the potential complications of IBD are far more serious and can even be life threatening.
How is IBD (or IBS) diagnosed?
If you are experiencing symptoms associated with inflammatory bowel disease or irritable bowel syndrome, such as diarrhea, abdominal pain, cramping, or bloating, seek the guidance of a medical professional. In many cases, the diagnosis of IBS is actually derived as a result of excluding other explanations for the symptoms, including an inflammatory bowel disease.
Confirmation of a diagnosis will usually come from a gastroenterologist (a doctor who specializes in treatment of conditions relating to the digestive system) and will be based upon endoscopic procedures that send a camera into the stomach or into the colon, imaging studies such as CT scans or X-rays, and lab tests. Because one of the forms of IBD (Crohn’s disease) can occur in any part of the digestive tract, there is no single test that can completely rule out IBD.
How is IBD typically treated?
The goal of any IBD treatment is not only to provide relief from symptoms but to reduce the underlying inflammation that causes those symptoms. Because inflammation drives the most serious longterm complications associated with IBD, this is very important. The first step for treatment is typically anti-inflammatory pharmaceuticals, prescribed by a physician. These include corticosteroids such as prednisone and aminosalicylates that are taken orally as a pill or perhaps as a suppository or enema, if the inflammation is only in the rectum and colon. In some cases, antibiotics such as ciprofloxacin and metronidazole are also used in combination with these. If the first-line anti-inflammatory medications are not effective enough on their own, medications that actually suppress the immune system may be prescribed. These include azathioprine, mercaptopurine, and methotrexate – among others.
When I was diagnosed with Crohn’s disease in 1995, my doctor told me that I might want to adjust my diet to avoid any foods that bothered me, but said there was no evidence that diet changes mattered beyond that (and to be completely honest, as a 19-year-old college student who just wanted to get back to my life as it had been before I got sick, I was glad to hear that). I was first prescribed an aminosalicylate and an antibiotic, then later immune suppressing medications, and repeated rounds of prednisone when flares got really severe. I did my best to ignore the symptoms and carry on, but in truth I was in near constant pain and arranging daily life to always be near a bathroom since I never knew when I’d need to sprint for one.
When the first biologic medication, infliximab (Remicade) was made available in the late 1990s, I finally had a treatment that seemed to work and did not burden me with any obvious side effects, thus allowing me to experience an improved quality of life. But the damage caused during those first few years would be with me forever.
Today, a number of biologic medicines have been developed, some of which are administered through intravenous infusions and others through injections, and many of which are also used for treatment of other autoimmune diseases since they target particular cytokines which can cause inflammation in various ways throughout the body. These include adalimumab (Humira), golimumab (Simponi), certolizumab (Cimzia), vedolizumab (Entyvio) and ustekinumab (Stelara).
Unfortunately, there is no standard medication protocol that works for every person with IBD and in some cases a medication that had previously been helpful for a particular patient will stop working. Since all of these medications have been developed only within the last 25 years, it is impossible to say with certainty that there are no long term negative impacts of these treatments. Finally, these biologic medications come with a very hefty price tag, may take multiple weeks or months to take effect, and require diligent compliance, so they are not necessarily the appropriate tool for all situations.
What happens if IBD isn’t treated?
Although inflammatory bowel diseases usually aren’t fatal, they are serious conditions that may cause life-threatening complications including anemia and malnutrition, bowel obstruction or perforation, and the development of strictures or fistulas that can involve other organs. These complications may require hospitalization and surgical intervention.
In other words, IBD is not “just” an inconvenience.
IBD is also also not just a “pooping disease”! Skin, eye, and joint inflammation can occur during flare-ups. Having either ulcerative colitis or Crohn’s disease that affects your colon can increase the risk of colon cancer, inflammation that causes scarring within the bile ducts can cause liver damage, and IBD increases the risk of blood clots in veins and arteries.
Treatment does not guarantee these complications never occur, but just trying to live with the symptoms of IBD and ignoring the potential consequences could make them more likely, so it is important to take the condition seriously and work closely with qualified medical care providers to find treatment that keeps disease activity to a minimum and quickly brings flares under control.
What do we know about how AIP can help people with IBD?
As I mentioned earlier, when I was diagnosed in 1995 my doctor told me that there was no evidence that changing one’s diet could do anything more than help you better manage symptoms, and he was correct about that lack of evidence at the time. But today, while there is still no consensus on exactly how best to utilize AIP (or other dietary strategies) for maximum benefit, there definitely is evidence that it does have efficacy for many people!
In 2016 a study on the efficacy of the autoimmune protocol for IBD was conducted by researchers at Scripps Clinic in La Jolla, California and the results were published in the November 2017 issue of the journal Inflammatory Bowel Diseases.
Participants all had a confirmed diagnosis of either ulcerative colitis or Crohn’s disease with a mean IBD duration of 19 years (which means these were people who had been living with these conditions for a long time). To qualify for the study they needed to be experiencing active disease at the study’s start and eating what would be considered a standard American or “western” diet. Most of the participants were taking medication under the guidance of a gastroenterologist and were advised to continue their medications.
The AIP dietary intervention in the study consisted of staged eliminations of grains, legumes, nightshades, dairy, eggs, coffee, alcohol, nuts and seeds, refined/processed sugars, oils and food additives over the course of 6 weeks, followed by a 5 week maintenance phase.
Clinical remission was achieved by week 6 by 73% of the study participants and all of those maintained clinical remission during the maintenance phase of the study. Although this was a small pilot study, the results indicate that AIP can be a very effective component of treatment for active IBD.
To learn in-depth about the study methods, measures, analysis, and results, you can access the full article here.
Are there any other dietary strategies that can help a person with IBD?
Just like no single medication is effective and appropriate for all individuals with IBD at all times, there is no single diet or dietary strategy that is the perfect fit for everyone. AIP works for many, but other protocols can work too. In fact, the first approach I tried was the Specific Carbohydrate Diet (SCD) and it helped me get out of a flare that was so bad I needed blood transfusions. Ultimately, my progress using SCD plateaued and my mental health was suffering, so I started looking for other options and found AIP, which helped me unlock even greater wellbeing and offered a path forward that I could sustain.
Researchers have also looked at the efficacy of the Mediterranean diet and found that it and the SCD both appeared to improve symptoms and quality of life in Crohn’s disease patients with mild-to-moderate systems. Hospitalized patients in Japan are commonly recommended to consume a semi-vegetarian diet and found positive results in preventing relapse.
Additionally, a low-FODMAP diet can be helpful for symptom relief in patients with IBD who also have IBS. A low-fiber or “low residue” or even a completely liquid (enteral) diet may be used in certain situations and has been proven to induce remission in children with Crohn’s disease.
Finally, though researchers have not yet proven that a gluten-free diet reduces inflammation in the absence of celiac disease, many IBD patients find that avoiding gluten provides them relief from symptoms and may help them stay in remission.
The key takeaway from all of this research is that diet does matter!
Is AIP appropriate for everyone with IBD? Should AIP be modified in any way?
While the 2016 study conducted by Scripps Clinic researchers did produce impressive results (indeed, 73% achieving clinical remission with AIP rivals the efficacy of the most effective medications), it is also important to acknowledge that two participants who had existing strictures (narrowing of the digestive tract) had to withdraw before the study concluded because they experienced worsening disease activity or partial small bowel obstruction.
In noting this, the study authors wrote, “Therefore, although dietary elimination can be helpful, consideration should be given to anatomical variation and requires counseling and close follow-up.” This means that AIP could still be appropriate for people with strictures, but they should be cautious and seek support from an AIP Certified Coach or other professional who can help them develop a plan that suits their needs.
Even in the absence of strictures, people who are transitioning to AIP while they are in the midst of an IBD flare may need to make modifications. For example, they may be unable to comfortably tolerate raw produce and need to avoid salads and consume only well cooked vegetables and fruit until they start to feel better. Others may need to go even further and opt for pureed soups or even limit the overall fiber intake by selecting only “low residue” produce or supplementing their diet with fresh vegetable juices until they are able to tolerate the fiber again.
AIP can also be challenging for people with IBD who are underweight to begin with or who are experiencing symptoms that include nausea or loss of appetite and struggling simply to consume enough AIP-compliant food to meet their calorie needs. These people should place a particular emphasis on consuming more calorie-dense AIP-compliant foods and may need to eat more frequent smaller meals or snack more than others.
If necessary, personalizing the elimination phase by adding back in certain foods that are easily digested and often well-tolerated in the reintroduction phase may be the best choice so that people with IBD can maintain or gain weight and still experience the benefit of AIP. Again, an AIP Certified Coach can be a good resource for fine tuning a personalized elimination plan.
What about medication? If AIP is effective, can medication for IBD be discontinued? Can AIP replace medication entirely?
The topic of medication is a complex one and unique to each individual. Some people do indeed manage IBD entirely with diet and lifestyle and do not take any medications. Some people are able to reduce their dosage or switch to a medication with fewer potential side effects. And others find that they still need to take medication but that those medications are far more effective in combination with AIP.
Before I go any further, I want to make absolutely clear that no one should stop or alter the dosage of any prescribed medication without first consulting their doctor. Abruptly stopping some medications can lead to serious adverse effect and for other medications, stopping for a period of time can mean that they will be less likely to work in the future if you should need them, so you should seek guidance and then keep your follow-up doctor appointments to do routine monitoring.
I often hear from people who are dealing with IBD that they feel like they have failed if AIP isn’t enough and they need to take medication. To those people I remind them that IBD is serious and can have life-threatening consequences! Science doesn’t entirely know what causes IBD and while some factors in the modern world do seem to be driving an increasing prevalence of these conditions, the truth is that IBD has existed in history as far back as we have records and in populations eating all types of diets so we do know with certainty that food alone is not the sole cause. Using AIP can make a big difference but if medications are also needed in order to maintain a good quality of life and avoid complications, then I say celebrate and be grateful that those tools are available to you!
I should know. After those first few years of living with Crohn’s disease before an effective medication was available, portions of my intestine had become so badly scared that strictures developed so severely that they caused considerable pain. Furthermore, the narrowing was so bad that my doctor could not complete a colonoscopy and was worried that I’d end up in emergency surgery with a bowel obstruction. So, in 2007 I had a planned resection but unfortunately, there were complications following the surgery and I nearly died from sepsis. I needed a total of 6 more surgeries in the following two years and spent portions of that time unable to consume any food by mouth and unsure if I would ever recover.
Thanks to a skilled team of surgeons and other doctors at the Cleveland Clinic, I did recover. But the whole experience was so traumatizing that I didn’t want to face anything relating to the medical system, so I opted to see what happened if I went without medication. Ultimately, that lead to a flare so bad that I needed blood transfusions and finally to my decision to change my diet, which I did in 2013.
As I mentioned earlier, AIP helped me get up from that rock bottom. But in the end it wasn’t enough and I also needed to address some lifestyle issues like reducing stress and getting better sleep.
I also needed to go back to taking medication.
So, I have had the personal experience of all of the scenarios. I took medication only. I did AIP only. They both worked… to some degree. But in combination, they work so much better.
When I was first diagnosed with Crohn’s disease as a 19-year-old, my goal was simply to get through each day and survive for another. But simply surviving isn’t enough now that I’m in my mid-40s. My goal now is to thrive… and I’m happy to report that I am doing just that.
In 2013 I started a blog called Gutsy By Nature to share my story and the recipes I was developing as I began to use AIP (and to keep me motivated to continue even when it was hard!). Through that blog I met Angie and Mickey who inspired me to follow in their footsteps and in 2017 I went back to school to study nutrition and became an AIP Certified Coach. In 2018 I left my corporate job and launched my coaching practice and in 2020 I hosted the first ever online summit focused exclusively on the AIP and the experiences of people living with autoimmune diseases and using dietary and lifestyle changes to manage them.
It is true… my life with IBD has not been an easy one. But it has shaped me into the person who I am today and I would not go back and change any of it. Instead, I keep focused on the present and the road ahead, and use what I have learned from my experiences to help other people who are navigating their own journey.