Digestive Disease Week: Impact of COVID-19 on GI Patients and Practices

The Impact of COVID-19 on GI Patients and Practices was an eye opening session that shed light on the effects the coronavirus has on GI patients. Adam VanDeusen shared his study covering how crucial colonoscopies and endoscopies are in the management and diagnosis of inflammatory bowel disease, among many other illnesses and cancers, an area that is being profoundly affected by the COVID-19 pandemic. Timely diagnostic and management procedures, such as colonoscopies, are critical to ensure that patients receive the treatment they deserve in a quick and timely manner, whether that be an IBD diagnosis, management of IBD including a switch in medication, screening for anemonas and colorectal cancer. I’m sure many of you reading this with inflammatory bowel disease or other digestive diseases can relate to how the pandemic has hindered your healthcare and treatment. This reiterates why studying how to decrease backlogs and improve patient care in a critical part of every digestive illness, including colonoscopies and endoscopies, are so important. 

VanDeusen discussed the reality of COVID-19 and its detrimental effect on colonoscopies needed for patients. The COVID-19 pandemic has caused a high number of cancelled or deferred endoscopies and colonoscopies since March 2020 due to health system policies, staff and facility re-deployment, and distancing measures. For my fellow IBD readers, I’m sure this doesn’t come as a surprise to you. Across the world, many colonoscopies and endoscopies were delayed or cancelled, causing stress, chaotic management of treatment, and prolonged diagnoses. In addition to IBD, colonoscopies to detect colorectal cancer, a type of cancer that can be prevented and treated when undergoing timely diagnostic colonoscopies, have been backlogged and delayed. VanDeusen dives into simulation predictors that forecast solutions to reduce the backlog and wait times patients are experiencing to ensure diagnostic treatments via colonoscopies and endoscopies are available for patients. As an alternative to colonoscopies, many gastroenterologists have been using a high-sensitivity stool-based test (FIT) as a way to detect colorectal cancer to prolong screening wait time from five to seven years if the results come back negative. 

Benefits of high-sensitivity stool-based testing: 

• Alternative to colonoscopies to detect colorectal cancer 

• Lessens wait times 

• Extend time between colonoscopy screening 

The three strategies in the simulation are Overtime, Exchange, and Extend. Through Exchange, GI clinics utilized the stool-based tests as an alternative to colonoscopies for patients that were referred strictly for colorectal cancer screening. Stool-based testing resulted in reducing the wait times for patients undergoing colonoscopy screening referrals as well as allowing quicker wait times for patients with no alternative diagnostic treatments. The second strategy, Extend, extended screening colonoscopies for patients with 1-2 adenomas on previous colonoscopy exams from five to seven years. Lastly, the Overtime strategy added one weekend endoscopy day to result in quickly seeing more patients for endoscopies and colonoscopies. 

VanDeusen highlights that the study aimed to quantify the impact of evidence-based strategies to improve endoscopy access during the COVID-19 pandemic. The method created a model of a single endoscopy unit with an integrated healthcare system using a discrete event simulation in C++. The model began in March 2020 for 150 weeks and each simulation was replicated 100 times to ensure accuracy. To simplify the model used, when a patient arrives to book a colonoscopy and that patient is unable to secure a scheduled appointment, that patient is then put into the queue. This study looked at four different simulations to provide the best approaches for GI clinics to achieve the lowest wait time, Extend, Exchange, Overtime, and a combination. 

VanDeusen explains that the study shows that triaging patients effectively will result in performing more diagnostic and high-risk surveillance procedures in a timely fashion. Without offloading strategies, prolonged queues and wait times develop, especially for screening colonoscopies. The Overtime strategy of one weekend endoscopy day increased colonoscopy volume and had the greatest impact on the number of screening procedures completed. The Exchange strategy reduced overall wait times more than Extend and Overtime. Combining strategies is the most effective solution, especially given the fact that doctors and healthcare staff have been continuously overworked during the pandemic. 

Takeaways: 

• Effective triage will reduce colonoscopy backlog and queues 

• Doctors working overtime is the single best strategy to reduce colonoscopy wait times 

• Combining strategies will best reduce colonoscopy wait times and allow more patients to be seen in a timely fashion  

This study was extremely important and was desperately needed to provide a solution to reduce wait times experienced in gastroenterology clinics across the world. The importance of this study is paramount and must be recognized and implemented by GI clinics and doctors to reduce wait times and improve treatment for patients for not only colorectal screening and diagnosis, but also for all patients with digestive diseases, including IBD. For those patients whose treatment has been affected by the pandemic, including me, this provides great hope and comfort that medical treatment can return back to normal and can withstand future uncertainties. 

Growing Pains: IBD Lessons Learned from the COVID-19 Pandemic

In March 2020, the COVID-19 pandemic turned the world upside-down as we knew it -- that, in and of itself, is already the understatement of the year. Disability activist Alice Wong spoke of how the nation’s need for ventilators in hospitals directly conflicted with her needs as a disabled patient; Tiffany Yu, founder of Diversability, used her platform to raise awareness of transparent masks for easy lipreading access. Already, at-risk patients suffered from a lack of attention and space, only for this to be exacerbated by a public health crisis. 

However, the pandemic also offered a chance for those with disabilities, and specifically IBD, to rethink our routines and lives. For example, in my own experience with Crohn’s disease, I’ve found that staying at home during the school semester had me re-thinking all my prior decisions in my relationship with food. It was, in fact, possible to regulate my diet and work in my medications without compromising my education -- the flexibility of virtual classes in university had opened up a new way of life for myself, one where I could sneak off to the bathroom during lecture without worrying about missing key points or bumping into desks. 

Living with Crohn’s, it often feels as though my time is not my own. This phenomenon of constantly running on other people’s schedules is not exactly unique to Crohn’s or IBD as a whole -- in fact, it refers to a concept known as ‘crip time,’ in which society and its timetables ought to bend to meet the needs of disabled bodies and minds. It’s a community-inspired term that essentially encourages us all to work on our own time, taking up space as necessary to meet our individual body and mind’s requisites. 

Whether it’s knowing where the nearest bathroom is, or having accommodations to turn the Zoom camera off, accessibility is an essential cornerstone of working with IBD. As a college student, I’ve found that communication with professors and administrators has become easier in a virtual setting, allowing for flexible office hours and minimal commute to buildings. In all workplaces, key lessons should be taken and continuously applied from the pandemic, particularly in regards to accessibility for disabled folks. 

With this being said, a major caveat is that we as a society are almost always ‘plugged in’ or online -- being available on Zoom has made it near impossible to draw the (much-needed) line between home and the office, allowing professionals to work around the clock. As the world shifts back to a new state of burgeoning normalcy, may we all remember the importance of accommodating disabled folks in the workplace, in-person and virtually. 

For those with IBD or any chronic illness, it is of the utmost importance that we too learn where to place boundaries in our work lives, prioritizing our physical and mental health above all. 

Diversity in IBD: Being Disabled and Asian American

Almost exactly one year ago, I was diagnosed with Crohn’s disease after a grueling few months of trial-and-error diagnoses by my medical team. Truth be told, the news was a shock to my family, but not for the reasons you may first think of. 

In my mother tongue, there is no widely accepted translation for “Crohn’s disease,” not to mention “Inflammatory Bowel Disease.” In a way, my Asian American identity is one reason why it took so long for me to receive my diagnosis of Crohn’s disease in the first place; my gastroenterologist had not previously thought to test for a condition that was thought to be more common in Caucasians or Ashkenazi Jews. Even amidst official resources from various foundations, it is admittedly difficult to find Asian representation within the IBD community.

As a disabled Korean American woman, I experience IBD through the lens of multiple marginalized identities. At the intersection of ability, ethnicity, and gender lies an incredibly complex set of conversations that society has yet to fully parse out and create space for. 

While chronically ill and disabled folks found themselves facing a morphing status quo that was being overturned by a worldwide pandemic, their fight for accessibility and accommodations was simultaneously accompanied by embroiled racial justice initiatives. The Health Advocacy Summit has written extensively on how racism is a public health crisis, underscoring the need to include all marginalized communities in our activism efforts.

Personally speaking, I came face-to-face with the inevitable intersectionality of advocacy in the fight against anti-Asian hate. In the wake of 2020, the United States began to witness an alarming surge in anti-Asian racism that quickly escalated to violence and hate crimes. As a chronically ill patient, I knew exactly how it felt for an entire community to be marginalized, vulnerable, and at-risk, making it all the more urgent for me and my fellow student leaders to speak up against these acts of hate.

The intersectionality of these two identities is rarely discussed, yet they both mold and inform the other. My diet, my language, and my roots are so intimately tied to my Korean heritage, and in turn, my Asian American identity shapes the way I understand my chronic illness. As Sandy Ho wrote in Alice Wong’s Disability Visibility, “taking up space as a disabled person is always revolutionary,” but especially in the ways in which traditional East Asian attitudes often conflict with the mindset of the evolving American immigrant. 

The same goes for the ways in which Asian culture influences food options for those with IBD. Nandani Bhanot, another 2021 CCYAN Fellow, wrote about how IBD diets and treatments are rarely created with people of color (POC) in mind, alluding to the lack of content on modified diets with traditionally Asian dishes.

Moving forward, I believe that my journey with Crohn’s disease and Asian American advocacy are not unrelated, but in fact, closely tied. Perhaps the best next step our IBD community can take is to create space for disabled POC, uplifting their stories and amplifying their voices. 

Digestive Disease Week: Empowered Crohn’s Disease Care

I would like to thank CCYAN for providing me this opportunity to patriciate in Digestive Disease Week (DDW) 2021. One of the sessions that I attended is “Empowered Crohn’sDisease Care: Targets, Tools and Talking Patients”. From this session, I have learned about the use of treat-to-target approach to treat Crohn’s Disease (CD), the tools that may help risk stratify patients with CD, and about the personalized approach to CD care. The session was split into three presentations, which were presented by Dr. Parambir S Durai, Dr. David T. Rubin and Dr. Corey A. Siegel respectively.

1) Treating to Target: Aiming for Endoscopic and Symptomatic Remission

By Dr. Parambir S Durai

What is the study about?

Dr. Durai presented about the use and benefits of a treat-to-target strategy in CD aimed at deep remission.

Presentation summary:

We need to understand how this treat-to-target approach work. Treat-to-target approach which is also known as a tight control strategy is used to achieve sustained disease control. Target and risk will be set during this time, assessment and continued monitoring have to be done to ensure targeted outcome has been reached. The most important goal in this treat-to-target approach is to achieve endoscopic healing, normalized quality of life and absence of disability.

The different studies mentioned in the presentation aimed to give CD patients early therapy using a treat-to-target approach. Treat-to-Target approach will be able to prevent adverse long-term outcomes. The studies suggest that the non-conventional methodsused at early treatment stage or frequently brings out positive outcomes to patients’remission.

Treat-to-target is treating CD patients until they achieve the desired target for the CD patients like us is healing. Healing can be mucosal healing where we go for endoscopy and the colon looks normal with no inflammation or ulceration. In some cases, there might even be histology healing which means when biopsy has done towards the colon or small bowel there is no inflammatory cells seen. In the case of a patient has fistula, then the target is to have closure of fistula. To achieve this target, the patient needs to be put under full remission.

According to Dr. Durai, patients whose response to the treatment by improvement in biomarkers results shown reduction in CRP and calprotectin. They may go for symptomatic remission. The next target is to achieve deep remission by continuing assessment and monitoring. At this stage, if the response is good, patient will be able to experience the huge improvement in symptoms, better quality of life, decreased in hospitalization and finally free from surgeries and disability and any serious disease- related complications.

Although the opportunities are huge and will provide patients with better quality of life or even achieving the absence of disability, there are some challenges that still exist in this approach. The first challenge is that treat-to-target is a time and commitment needed to follow through this approach as it needs more follow ups and more complexity of individualized process with the already busy clinical team. The other barrier is lack of knowledge of what might happen to patients later. Both patients and clinical team need to understand the limitation and provide active disease control to the patients.

2) Clinical Decision Tools: Assessing Risk and Taking Action

By Dr. Corey A. Siegel

What is the study about?

In his presentation, Dr. Siegel briefed about the importance of clinical decision support tools and suggested using clinical decision support tools to risk stratify patients for individualized CD care.

Presentation summary:

What are clinical decision tools? Dr. Corey explains that the decision-making tools are guidelines for medical providers to follow through different process based on different parameters. The tools can help to enhance medical decisions with provided clinical knowledge, patients information and other related information. And from the data gathered, doctors can formulating a diagnosis, assessing patients level of risk and help practitioner to improve the way they make decision to select medication for their patients from result shown from the tools.

Practitioner can apply several types of clinical decision support tools which has been developed such as AGA Clinical Decision Tool, IBD CDST, or CDPATH.

What can we learn from this presentation?

1. This tools help practitioner to decide right medication for patients based on the balance of risks and benefits especially at the early stage or before they develop complications.

2. By using these tools, it may help to reduce practitioners from making any risk of misdiagnoses and medication errors.

3. The tools improve efficiency and patients’ satisfaction.

4. . Give more confidence to practitioners to recommending right therapy and apply more aggressive monitoring technics.

3) Shared Decision Making in CD: The Path to Improving Quality of Life

By Dr. David T. Rubin

What is the study about?

Dr. Rubin discussed about the complexity of shared decision making for patient-centered and empowered CD care.

Presentation summary:

Dr. Rubin informed that the shared decision making involves three different parties. They are: -

1. Patient
- Person who suffer with IBD and request treatments.

2. Doctors/ IBD Nurses

- Medical provider who have fundamental knowledge about the disease and therapies which can be used to treat IBD.

3. Payor
- Person/company/agency who pays for the care and treatments for the patient.

To make the relationship between the three parties happen there are several factors that should take to consideration by all the parties. Refer to diagram below:-

He further explains that, for each patient, the provider and payor must consider four variables: efficacy, safety, convenience and access. These variables help to makeprogress and provide better care for the patients. Practitioners can use “Ethical Analysisand Medical Decision Making” framework to make difficult medical decision. This can help to strengthen the doctor-patient relationship.

a. Medical Factor (Beneficence)

- This is a value in which the provider takes actions or recommends courses thatare in the patient’s best interest. The principle is based upon the objective assessment of a doctor, and what they feel is best for their patient. The points of concerns are:-

•   What is the patient’s medical problem? diagnosis? prognosis?

•   What are the treatment goals?

•   What are the therapies recommended?

•   What are the risk factors of the recommended therapies as well as the disease itself?

•   How are patients benefited by medical and nursing care?

•   How can harm be avoided?

b. Patient Preferences (Autonomy)

- Refer to the patient’s right to make decisions for themselves according to theirown preferences. They can either agree to take treatment or refuse the treatment. The points of concerns are:-

•   Patient’s right to accept a treatment.

•   Reasons for patient’s refusal of treatment.

c. Quality of Life

- A major goal of medical treatment is to restore, maintain, or improve quality of life. Care management in treat-to-target should address the patients’ life goalsand include long term plan for stability and health. Quality of life is important in CD patients and their symptoms are directly proportional to the quality of thepatient’s life. The points of concerns are:-

•   Perception of quality of life

•   Normalization of symptoms

d. External Considerations (Justice)

- Involves provider bias or influences, resource allocations and payor decisions which effects the delivery of care for patients. Payors normally balance a budget and distribute their resources which might not be enough for the care the providers think optimum for the patient. There are differences in the providers view of what is needed and the payors view of what could be distributed in term of resources. Payor can look at different solutions to be more cost-effective, be more engaging in disease managements and partner up with experts to identify better support care for patients. The points of concerns are:-

•   What are the financial and economic factors involved in CD care?

•   Are there any problems for resource allocation?

•   Do payors have enough budget to cover the treatment?

  Dr. Rubin gave us an overview of how decision in CD are made and the complexity of it involving the three parties. Although decisions are individually based on differing onpriorities and values, the ultimate goal should be the patients’ sustained functionalremission. Therefore, the three parties involved should figure out how to care for CD patients and optimize the quality of life and involve payor more in the CD care.

  In summary, treat-to-target could be an effective way of treating CD patients with applying proper decision-making tools and involving all the decision makers (patient, provider and payor) to provide a better care, early treatment and allocate resources optimally.

Young, Nice, and Chronic Patient

Growing up is a process that we will all inevitably go through. We tend to live our lives with a sense that we are immortal. We learn to walk, we fall, we get up, we continue. Yes, life is pretty good. You learn a lot, you see new things, you spend a lot, you enjoy it. It is something that everyone does - living their life. It looks pretty simple until we start growing up.

In adolescence we begin to feel "older.” We go to school, we work for the coming of our adulthood. I looked like an ordinary teenager, I felt like an ordinary teenager - I thought everything was fine.

It was not exactly like that inside me. The reality was a little different. I was always the petite one of the class and I got sick often. The first symptoms of Crohn's disease began, which soon brought the psoriasis, then arthritis, and, recently, adrenal insufficiency.

New and full of life as I was, I was already setting goals for the future and dreaming. Yes, I was sure I would become an artist, I had decided.

Apart from some minor health issues, such as abdominal discomfort and lack of appetite, there was nothing wrong with me. That is, as far as I knew. I did not live in them, I was new. I was full of ambition!

I was about 15 years old when I began to realize that I should not take my health for granted.

I was at home relaxing listening to music when I suddenly collapsed in pain. I could not stand up.

A little later I was in the emergency room of a provincial hospital. Examinations, medications, but it seemed something temporary - it was not, as it turned out later. I was young, nothing could hurt me - or so I thought.

Then, I got some gastroenteritis (!) and it took me over a month to "recover" - obviously, since it was not gastroenteritis. Suddenly I started to get sick quite often. It had become difficult for me to live like an ordinary teenager, yet I was trying to go to school, the conservatory, and the orchestra.

I did not care much then, though. I was probably used to it. That was what I knew. I think my attitude started to change about a year later, when the visits to doctors and hospitals had increased significantly and I started to have more problems.

It was hard for me, as I suddenly had to struggle with things I had never imagined. I could no longer do what normal teens did.

As time went on, the "mysterious" disease then dissolved me more and more.

And life was moving on. I had to make brave decisions - it was not easy at the age I was then - as my health was deteriorating. I had to stop several things I liked or adjust them to the rhythms my body could handle.

I didn't do many things anymore. The only thing that kept me going was the music; it was becoming an increasingly important part of my life. I went to concerts very often because it was one of the few things I could do during that time. This made me face some of the difficulties I was going through.

After several years passed, I was then diagnosed with Crohn's Disease, psoriasis and arthritis. With the treatment I was receiving I was in remission and I had started to do everything. I was in university, I went on many trips, I went out and had fun, I went to concerts , I played in concerts. I no longer had almost any restrictions.

Until I began to feel very tired, nauseous, have a lack of appetite, and dealt with some other symptoms. I spent months looking for what had "broken" and why I felt that way. My examinations did not show any exacerbation of my known diseases. And then the day came when my rheumatologist told me to visit an endocrinologist and get tested for adrenal insufficiency, as the symptoms I mentioned made her believe that this diagnosis was very likely.

I could not make it to visit an endocrinologist because it was in the first wave of the pandemic, when everything was frozen around us, until I ended up in the hospital. A little later we had the results of my exams. My cortisol was very low, marginally detectable. My rheumatologist was right.

I was -again- newly diagnosed with something I knew absolutely nothing about and with a prescription for drugs I had never taken before.

In the following weeks I made the mental and physical adjustments to live with this new diagnosis that had just been added to my list of diagnoses.

Self-Care and IBD: Tips for a Healthy Post-Surgery Routine

Just this past June, I was rushed into the emergency room for examination under anesthesia (EUA) to address internal fistula and abscess formation. As life would have it, this was the same week that I was to start my D.C. internship in the Senate; with the new intern orientation ticking around the corner, I found myself drowning in anxiety just sitting in the emergency room. 

In a short amount of time, I had to manage my stress levels while planning for what my new summer life would look like post-surgery. With that being said, here are three tips to handle your post-surgery: 

1.  It is your choice on how you tell your immediate circles about your surgery. 

Sharing news about going into the operating room, especially under short notice, can be harrowing. In today’s age of social media, it often begs the question of how much is appropriate to share with our followers or our close friends. Remember that it is ultimately your decision as to when and how you tell your friends and close relations about your situation. 

Do not feel pressured in any way, especially regarding confidential medical details. With that being said, it can be comforting to know that caretakers and family will be there for you after your operation -- make sure you have the support you need to the extent to which you feel comfortable.

2. Treat your energy and capacity as if they were spoons.

Allow me to explain. One mentality that has radically changed the way I approached self care was the spoon theory: if one were to imagine their energy supply as a finite number of clean spoons they had to use throughout the day, then it is a matter of strategy on how one should distribute their spoons for the day. 

This tip can be applied to all aspects of life with a chronic illness, but especially after surgery. Don’t be afraid to prioritize yourself and your health during your postoperative recovery period. Those of us with IBD and chronic illnesses already have fewer ‘spoons’ to last throughout the day; as a result, we must be more mindful with our energy supply. Especially after surgery, we should focus on physical recovery and pain management above all.

3. Be kind to yourself. 

Sometimes, getting out of bed is the most you can do. Or, you might not even have the energy to sit up. What I’ve learned this past month is: you’re doing your best, and that’s enough. Every IBD patient is different; there truly is no one-size-fits-all answer. What I’ve learned is that living with Crohn’s disease looks drastically different from one patient to the next, creating what can be a very isolating and lonely experience. 

Nevertheless, with all these tips in mind, I would be remiss not to highlight how fortunate I feel to even have access to surgery and healthcare in the midst of the pandemic. I must also note that many of these tips are contingent upon the assumptions of having caretakers and a flexible routine, luxuries not afforded to many patients in more stringent economic conditions. As patient advocates, we should all be aware of the varying circumstances in which we all receive treatment. 

Undergoing surgery never gets easier, no matter how many times one heads into the operating room. However, I hope these tips can make your post-surgery transition a bit easier! Let me know what your self-care routine is like below!

Disability Pride: Educating Myself on IBD and Chronic Illness

July marks the start of Disability Pride Month! Crohn’s disease, and Inflammatory Bowel Disease overall, is covered by the Americans with Disabilities Act (ADA), a landmark civil rights legislation that was passed in 1990. The ADA effectively prohibited discrimination against those with disabilities by law, and although it has not completely eliminated obstacles for the disability community (far from it, in fact), significant strides have still been made towards progress for the disabled community.

While I’m thankful to live in a post-ADA world each and every day, I certainly faced my own struggles with embracing Crohn’s as part of my new life. One part of accepting my IBD diagnosis that blindsided me was the simple yet powerful act of accepting my disability -- I had anticipated the physical challenges that accompanied the surgeries and the colonoscopies, but I was not as prepared to tackle the internalized ableism that I had been raised with. 

In particular, I found a great deal of comfort in reading more about those who came before me with chronic illness and disability. Just under a year ago, John Altmann and Bryan W. Van Norden wrote a piece for the New York Times on disability philosophy and the ancient Taoist philosopher, Zhuangzi. They proposed that Zhuangzi was the first to challenge the notion that being disabled was immediately a misfortune, instead questioning the assumptions behind what qualifies as merit or value in society.

Far too often, those with chronic illnesses are not at the forefront of disability pride -- after all, it is not always easy to express solidarity with a community when one has an invisible disability such as IBD. However, this may actually be one of the most compelling reasons to celebrate Disability Pride month! For me, I found that reading more about the history of disability theory and activism allowed me to gain a greater appreciation for the often underreported legacy of such advocacy. Although I may be a bit biased as a current university student, I’m a firm believer that education is the key to equipping ourselves for the uncertain future that lies ahead.

Take a second to check out the several articles penned by our CCYAN Fellows this year, particularly those from Digestive Disease Week! Furthermore, as you celebrate your own IBD journey during this Disability Pride Month, here are some books on disability and chronic illness that you may find helpful!

• Disability Visibility by Alice Wong

  • Part 1, “I’m Tired of Chasing a Cure” by Liz Moore

• Haben by Haben Girma

• The Disabled God: Toward a Liberatory Theology of Disability by Nancy Eiesland

• Sitting Pretty: The View from My Ordinary Resilient Disabled Body by Rebekah Tausig

• Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann

• Crip Theory by Robert McRuer

Let us know what your favorite reads are!

Digestive Disease Week: Positive Gluten Sensitivity Seriologies and the Impact of Gluten Free Diet in Patients with IBD

There are a lot of strong opinions surrounding gluten free diets. Some view them as a fad diet, popularized by media and celebrities. Others report real improvements in their GI symptoms when going gluten free. And of course there are those with Celiac Disease, for whom a gluten free diet is a life changing therapy. Throughout my time as an undergrad studying dietetics, I have learned about the gluten free diet from all angles. I think a lot of the confusion surrounding the gluten free diet in IBD comes from two sources. First, there appears to be a difference between what patients report and what the limited research has shown. Second, this limited research and lack of conclusive evidence has created a difference of opinions among healthcare professionals themselves. It is a difficult situation where providers using their clinical judgement can recommend for or against IBD patients going on a gluten free diet, and both recommendations would be completely justifiable. 

In this article, I plan to give some background on the gluten free diet, and the current evidence for and against its use for patients with IBD. Then, I will summarize the wonderful study I learned about during DDW 2021 presented by Dr. Maria Moomal Dahar titled: Positive Gluten Sensitivity Seriologies and the Impact of Gluten Free Diet in Patients with IBD.

What is a Gluten Free Diet?

Gluten free diets are designed to eliminate the protein gluten from one's diet. Gluten is a storage protein found in some grains, including wheat, barley, and rye. Gluten is an important protein for baked goods, as it forms a sticky network that gives dough its characteristic stretch and elasticity. I don’t want to go too much in depth, as there is already an amazing article on the CCYAN website written by Leah Clark that describes the gluten free diet. If you desire to learn more about the specifics, her article can be found here.

The Gluten Free Diet and IBD

The main reasons to follow a gluten free diet are Celiac Disease, non celiac gluten sensitivity, and wheat allergy. 

Previously, there had been conflicting data regarding whether IBD patients are at a higher risk of developing Celiac Disease than healthy people. Some older, smaller studies have found increased risk, while others have found no increased risk or even decreased likelihood of having Celiac Disease.1 A recent, larger study has shown that IBD patients have an increased risk of having celiac disease. 

Non celiac gluten sensitivity is characterized by abdominal pain, discomfort, bloating, changes in bowel habits, fatigue, or depression after consuming gluten. The prevalence of non-celiac gluten sensitivity in IBD patients surveyed is reported to be between 5-28%.1 Those IBD patients who reported non-celiac gluten sensitivity were more likely to be following a gluten free diet. One thing I found interesting was that IBD patients were more likely to report gluten sensitivity if they also had a flare in the past 60 days. This points to the possibility that gluten sensitivity might be worsened in patients who are currently flaring or who have recently had a flare up of their IBD. 

Most research on the gluten free diet in IBD patients has been done through survey based studies. Unfortunately, these types of studies can only provide weak evidence at best. The surveys did find that of IBD patients who had tried a gluten free diet, about 2/3 reported an improvement in one of abdominal pain, bloating, diarrhea, nausea, or fatigue. About 40% of patients following a gluten free diet reported less severe or less frequent flares. Contrary to those positive results, a different survey study found that there were no significant differences in disease activity, hospitalization, or rate of surgery in IBD patients following a gluten free diet versus those who were not. 

A few different organizations and guidelines have weighed in on the gluten free diet and IBD:

• The International Organization for Inflammatory Bowel Diseases currently states that in IBD “there is insufficient evidence to recommend restriction of wheat and gluten.”

• The Crohns and Colitis Foundation states that “some IBD patients have found that a gluten-free diet reduces their symptoms, but researchers have not proven that it reduces IBD inflammation.”

• The Asain Working Group guidelines on diet and inflammatory bowel disease state that “a gluten-free diet is not of a proven value in patients with inflammatory bowel disease.”

There are also some confounding factors when discussing gluten free diets. Gluten is often paired with fructans in foods, which are a type of fermentable carbohydrate that is associated with gastrointestinal symptoms. One study showed that 80% of patients with suspected non-celiac gluten sensitivity couldn’t be diagnosed after a gluten challenge.2 This points to the possibility that something found alongside gluten might be the culprit. Fructans offer a convincing alternative cause for why some might experience GI symptoms while eating gluten containing foods. Indeed, research has shown that in patients with suspected non-celiac gluten sensitivity, eating fructans was associated with more gastrointestinal symptoms when compared to eating gluten.3

Positive Gluten Sensitivity Seriologies and the Impact of Gluten Free Diet in Patients with IBD

When I first noticed this study as a part of DDW I was excited. I think that the study design is well thought out. The term “Celiac serologies” means that antibodies to proteins associated with consuming gluten were found in patients’ blood. These patients have immune systems that have already falsely identified these specific proteins as foreign invaders. By studying patients with positive celiac serology, the researchers were able to look at the effect of a gluten free diet in the patients that were likely to experience the greatest benefit from going gluten free.

The goal of this study presented by Dr. Maria Moomal Dahar was to determine if there were any differences in clinical outcomes between IBD patients with positive celiac serologies following a gluten free diet compared to those who were not following a gluten free diet. Out of the 1537 patients IBD patients looked at, only 89 had positive celiac serologies. Of these 89 patients, 29 reported adhering to a gluten free diet.

One interesting finding was that of the 89 patients with positive celiac serologies, those who were not on a gluten free diet were more likely to have a high ESR (measure of inflammation) and eosinophilia (associated with inflammation and infection).

Based on this study, the authors recommend testing for celiac serologies in patients with IBD. They also suggest a trial of a gluten free diet in IBD patients with confirmed celiac serologies. 

My Closing Thoughts

It is so important that research is being done to evaluate the gluten free diet in IBD. Any time where a large majority of patients report improvement following a dietary trend, that should at least warrant some investigation into whether or not those improvements can be replicated in a randomized controlled trial. I am thankful for researchers like Dr. Dahar and her colleagues who are making efforts to further our knowledge in regards to the gluten free diet and its use in IBD. 

One thing I also want to note is that the majority of therapeutic diets studied in IBD (IBD-AID, CDED, EEN, and SCD) all exclude gluten containing grains. Some of these diets show real promise in treating inflammation or alleviating symptoms of patients with IBD, and it is a trend worth noting. On the contrary, the mediterranean diet has also shown similar promising results, and includes gluten containing grains. 

In my opinion, current literature is frustratingly inconclusive. Like many nutrition topics, there isn’t enough evidence to be able to make any strong recommendations one way or another. In light of that, I think that the best approach is the same one I echo all the time: Find out what works for you individually. You know your own body better than any study, scientist, or doctor ever will. So if you notice feeling better on a gluten free diet, maybe that is something you decide you want to continue even if the evidence isn’t quite there yet to show benefit in IBD patients.

"You Don't Look Disabled"

“ You don’t look disabled. 

“You don’t look disabled” but some days I couldn’t go to school because I couldn’t leave my bathroom.

“You don’t look disabled” but I have to go to the hospital every two months for the rest of my life. 

“You don’t look disabled” but I have tried seven different medications for the same disability within three years. 

“You don’t look disabled” but some days my joint pain was so bad I couldn’t even pick up a pencil. 

“You don’t look disabled” but every time I walk into a hospital I am comforted and terrified at the same time.

“You don’t look disabled” but I used to sleep only three hours every single day for weeks because my steroids made it impossible to sleep.

“You don’t look disabled” but some days I can feel my throat close up from suppressing my anxiety.

“You don’t look disabled” but I have sat on my bathroom floor feeling like I couldn’t breathe because the nausea from my medications was so overwhelming.

“You don’t look disabled” but I am. ”

I have never understood why people tell me I don’t look disabled or that I don’t look sick. What is disability supposed to look like? Disability is not singular. Disability does not look one way. Disability is diverse. 

I do not want to prove I am disabled to strangers or people I know.

Though the intention behind this phrase may be to compliment me, I never feel complimented. I feel small. I feel like a fraud. I feel like I am faking my disability in some way. I feel like I do not know my identity. 

It is time for people with invisible disabilities to stop being doubted for being disabled. It is time for everyone to change their perspective of what disability looks like. We must listen to others’ stories. We must stop being bystanders when people with disabilities are doubted. 

Disability is not a bad word. It is not offensive. We should not be afraid of it. 

I am disabled and I am proud. 

This article is sponsored by Lyfebulb.

Lyfebulb is a patient empowerment platform, which centers around improving the lives of those impacted by chronic disease.

Communicating IBD

“‘Inflammatory bowel disease’ (IBD) sounds like a straightforward term — a disease of inflammation in the bowel. However, the history of IBD reveals a story of a nefariously complex set of idiopathic conditions. IBD defies definition, in part because its pathophysiology is not completely understood. For the same reason and despite substantial advances in research, IBD also defies cure. At best, IBD can be defined as a disease of disruption — disrupted physiology, microbiology, immunology and genetics.”1

Repeatedly, one of the challenges I face in having IBD is being able to effectively communicate the severity and uniqueness of the disease to my friends, broader society, and, at times, even myself. The quoted part above from the paper ‘A tale of two diseases: The history of inflammatory bowel disease’ articulates the complexity and vagueness perfectly.

I distinctly remember a time at school when my understanding of the world shifted from ‘adults know everything and humans have control over everything in this universe,’ to teachers starting to draw lines around exactly what is known to us. What’s left out were things even the biggest scientists who got us to the moon couldn’t decipher. During this mind shift, we learned about the limitless scope of space, the depths of the oceans, the uncertainty of what causes psychopaths, and having no cure for cancerous cells, among other things. I remember the fear but also a naïve invincibility that while these uncertainties exist, they will not be applicable to me or my loved ones. But IBD is unpredictable; it can hit almost anyone, at any age. And all the videos I saw on Facebook celebrating the new reaches of technology in healthcare – like that one video of a microcamera in a dissolvable pill helping doctors to see inside the digestive tract without invasive procedures – were just that, videos of research trials. The reality was always so much more ~simple~ with burdensome invasive procedures, like colonoscopies. 

 Medications to “manage,” not cure, IBD, are also primitive in the domain of medication, not outstanding. They always come with trade-offs – like ‘Get your colon back, but lose your bones!’ or ‘Stop bleeding, but eat like a garden rabbit for the rest of your life!’ or my personal fav, ‘Manage your illness in the gut, but leave with debilitating fatigue, brain fog, anxiety and depression! Bonus: It’s all in your head, even your doc won’t believe you.’

Living with IBD can be especially difficult due to you having to explain yourself and your situation so much. People may think you have a variant of food poisoning, or you somehow brought it on to yourself with unhealthy eating habits. The stigma about the ways in which IBD exists gives little leeway to understand the severity of it. IBD is both a hidden blessing (maybe blessing is reaching too far) and a curse, as it forces you to learn to be compassionate with yourself (that’s a big part of the closest thing we have to a cure), but shows you the irresponsibility, ignorance and pure apathy of the society around you. With cancer, for example, the pain and trauma are duly acknowledged by society. There is a sense of responsibility the society (whether that’s friends, school, work, strangers) feels to stand in solidarity and be helpful in those moments. In having a chronic illness, granted it is not cancer but still a very traumatic on-going experience, there is no assumed empathy-net provided in those dark moments.

For people like me, with social anxiety and people-pleasing tendencies, explaining the gravity of what you’re going through can be an impossibly difficult task. As I’m nearing my 5th year of having IBD, I confess I still go back and forth between playing it down to not take away from anyone or carrying resentment for people who could not understand in the past. On my best days – enjoying my iced coffee and spicy Indian food - I invalidate myself and ponder, did I really have it that bad or was it all in my head? On my worst days - on my knees, clutching my abdomen or sweating with AC at full blast at 3AM at night - I bitterly revisit the hurtful comments I’ve received over the years. Life has to go on, and in going forward, IBD patients need to build a society that holds space for them. 

Here are short notes on how I hold space for myself, and ask people around me to do the same:

1. On Badtameezi

In South Asian families, roles in a family are decided according to the age and relation. For example, a younger person, even if more experienced in a certain field, is not allowed to voice his/her opinion on some subjects; it's called badtameezi.

Badtameezi is the South Asian society’s way of manipulating you to exist in a way they deem fit. Practicing privacy, setting boundaries, cutting off from anxiety-inducing family members, and decision autonomy are just a few examples of being a “bad” person. All of the above are obviously necessary for a person with a chronic, stress-related illness, so it becomes important to choose whether you want the badtameez label and health, or tameezdar label and continuously deteriorating health.   

2. On Comparison

In the South Asian diaspora, the competitive spirit is a prominent aspect of life. India is the second most populated country on Earth, soon to be first, and resources are low, perhaps that’s why competition is high. While healthy competition is important in bringing out qualities like hard work and ambition, competition about health crosses lines over to absurdity. Yet, this is quite common. A simple “No, it’s not the same,” or “No, I feel like you’re not understanding what I am dealing with,” or “I’m very sorry you had to go through that. My illness however is very different because…” can suffice. If they’re open to it, you can open up about it more.

3. On Self-Invalidation,

It’s useful to journal during flares, not only for the benefit of your mental health, but also to keep track of your feelings on the worst days. To check in with yourself during those times makes it easier to not invalidate your experiences later on. I don’t have the discipline to keep journaling daily, but every time I am in physical pain, I do grab a pen and notebook to jot down my mental state and thoughts, and I refer back to it in times I forget what my experiences have been like. It’s also helpful to engage with a support group; the conversations around other’s experiences with triggers, symptoms, tests, doctor’s visits, work, friends and family can help you understand and navigate your own. Disclaimer though, everyone’s experiences are different in all the dimensions of the disease; your lived experiences will always be unique. Lastly, I like talking to someone who’s seen me at my worst to remind me how it really was, and that it was not all in my head. This could be a close friend or family member.

4. On Unsolicited Comments,

Just call them out on these. It’s 2021, people need to stop commenting on your weight gain/weight loss and any other changes they see in you, irrespective of whether it's due to your illness. A simple but firm statement like “If I need your opinion, I’ll ask for it,” or “I like it this way,” can help establish a boundary. 

---

1 https://academic.oup.com/ecco-jcc/article/8/5/341/616781