Season 2 Episode 2: Best Practices in Biopsies for Celiac Disease

Current Status
Not Enrolled
Get Started
This course is currently closed

Course Credit

The following credits are available for this course:

AMA PRA Category 1 Credits™ (MD, DO, NP, PA)0.75 hours
Contact Hours (Nurse)0.75 hours
ASWB ACE Continuing Education Credits (Social Worker)0.75 hours
CDR CPEUs (Registered Dietitian)0.75 hours

(Note: a course evaluation is required to receive credit for this course.)

Vanessa Weisbrod

Director, Celiac Disease Program

Janis Arnold headshot

Janis Arnold, MSW, LICSW

Clinical Social Worker, Division of Gastroenterology, Hepatology, and Nutrition

Imad Absah, MD

Pediatric Gastroenterologist, Mayo Clinic

This episode of the Raising Celiac Podcast looks at best practices in biopsies for celiac disease. Historically, confirmatory biopsies were obtained from the distal duodenum only, rather than the duodenal bulb. However, researchers have observed that some patients with celiac disease have histopathologic mucosal changes limited to the duodenal bulb only. This subtype, called isolated bulb celiac disease, has been estimated to occur in up to 12% of individuals diagnosed with celiac. Thus, to improve the sensitivity of biopsies in diagnosis, updated pediatric and adult guidelines now recommend obtaining both duodenal bulb and distal duodenum biopsies. But how can delayed diagnosis be prevented in the future? Do endoscopists need to separate the biopsies into separate containers for pathology review? Does isolated blub celiac disease relate at all to the levels of ttg antibodies in the blood? We’ll discuss this and more on this episode of Raising Celiac.

Learning Objectives: 

At the conclusion of this educational program, learners will be able to:

  1. Describe the prevalence and characteristics of isolated bulb celiac disease.
  2. Explain how a celiac diagnosis can be missed if a biopsy is not taken in the duodenal bulb.
  3. Understand best practices for endoscopy to diagnose celiac disease.

In support of improving patient care, Boston Children’s Hospital is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.


Boston Children’s Hospital designates this live activity for a maximum of 0.75 AMA PRA Category 1 Credits ™. Physicians should claim only credit commensurate with the extent of their participation in this activity.

Boston Children’s Hospital designates this activity for 0.75 contact hours for nurses. Nurses should only claim credit commensurate with the extent of their participation in the activity.

Social Work
As a Jointly Accredited Organization, Boston Children’s Hospital is approved to offer social work continuing education by the Association of Social Work Boards (ASWB) Approved Continuing Education (ACE) program. Organizations, not individual courses, are approved under this program. State and provincial regulatory boards have the final authority to determine whether an individual course may be accepted for continuing education credit. Boston Children’s Hospital maintains responsibility for this course. Social
workers completing this course receive 0.75 ACE CE continuing education credits.

Boston Children’s Hospital designates this activity for 0.75 contact hours for dieticians. Dieticians should only claim credit commensurate with the extent of their participation in the activity.


Boston Children’s Hospital adheres to all ACCME Essential Areas, Standards, and Policies. It is Boston Children’s policy that those who have influenced the content of a CME activity (e.g. planners, faculty, authors, reviewers and others) disclose all relevant financial relationships with commercial entities so that Boston Children’s may identify and resolve any conflicts of interest prior to the activity. These disclosures will be provided in the activity materials along with disclosure of any commercial support received for the activity. Additionally, faculty members have been instructed to disclose any limitations of data and unlabeled or investigational uses of products during their presentations.

The following planners, speakers, and content reviewers, on behalf of themselves, have reported the following relevant financial relationships with any entity producing, marketing, reselling, or distributing health care goods or services consumed by, or used on patients: 

Vanessa Weisbrod


Janis Arnold, MSW, LICSW


Isad Absah, MD


Please see the FAQs below for common questions about how to work through a course. If you have a question or issue that is not addressed in the FAQ, please use this form to submit a help request, or if your issue is urgent, call the CME office at: 617-919-9908.

How do navigate this course?

How do I navigate this course?

There are two ways to access and navigate course content with the interactive table of contents: at the bottom of the main course page or in the sidebar on the right side of the page. Select the links in the table of contents to access the corresponding content. Depending on the course, access to content may be linear, in which case each content module or section can only be accessed if the prior ones are completed, or non-linear, in which case modules and sections can be accessed in any order. Use the breadcrumbs at the top of any course page to orient yourself within a course, or return to a previous course section or the main course page.

How do I claim credit for this course?

How do I claim credit?

If the course has been accredited, available credits will be displayed on the course home page. Select only those credits that apply to your profession, and click/tap “Apply Selection.” You may make your selection at any point while you are taking the course, or after you have completed it.

How do I download a certificate?

How do I download a certificate?

There are two ways to view/download your certificate: from within the course or from the course listing under your profile (select the document icon). In either case, you must have selected at least one available course credit type to generate a certificate.

How do I view/print my transcript?

How do I view/print my transcript?

You must be logged in to view your transcript. Select My Profile at the top of the page. If you do not see the transcript selector, be sure the Courses tab is selected. Select the type of credit and dates to include in your credit report. To include all credits from all time, leave the options blank. Select Download Transcript to view/download your transcript. Note each credit type in your transcripts starts a new page.

How do I request a refund?

How do I request a refund?

Please email the CME Department to request a refund.

Click Here to View Transcript

Vanessa Weisbrod (00:02):

Welcome to season two of Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. We have some exciting changes for this season. The Boston Children’s Hospital Celiac program has teamed up with the Celiac Disease Foundation to expand the reach of our educational podcast. Our goal is simple, to provide education to as many health providers and patient families as possible. I’m Vanessa Weisbrod and I’ve started a new role as the chief Education and Community Engagement Officer at the Celiac Disease Foundation. In every episode, you’ll also hear from Janice Arnold, an incredible social worker at Boston Children’s Hospital, who is the voice of our patient stories. Each month on the podcast, we will invite leading experts to dive into a hot topic related to celiac disease and look at how it impacts a patient family, the latest research and offer suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education department for physicians, nurses, social workers, dieticians, and psychologists. To claim your credits for listening to today’s episode, please visit DME dot children’s celiac. We’ll also drop that link into the show notes. Thank you to the Global Autoimmune Institute and the Celiac Disease Foundation for making this podcast possible. Now let’s get started with this month’s raising celiac patient story.

Janice Arnold (01:42):

At the age of six, Daniel exuded boundless cheerfulness and energy, a vibrant child. He approached life with an infectious zest constantly seeking to delve into the wonders of the world around him, residing in a quaint town nestled in the heart of New Mexico, Daniel found joy in the simple pleasures of outdoor exploration. His days were filled with the excitement of gathering the renowned New Mexico red rocks and frolicking through meadows adorned with colorful wild flowers, though often returning home covered in mud from his outdoor adventures. Daniel’s parents cherished him wholeheartedly. It seemed like out of nowhere, Daniel began experiencing frequent bouts of stomach pain, bloating, and more fatigue than usual. At first, they thought it was just a phase. He was starting to eat more adventurous foods and had recently started kindergarten, maybe things would level out. But after several months of not feeling well, his parents made an appointment with the pediatrician. The pediatrician ordered a series of blood tests to see what could be causing Daniel’s symptoms. One of those tests was the tissue transglutaminase antibody tests for celiac disease. It came back positive more than double the upper limit of normal. The pediatrician immediately referred Daniel to a local gastroenterologist.

Vanessa Weisbrod (02:57):

Celiac disease is an autoimmune disease. The name celiac comes from the Greek word for abdominal, and the condition is a lifelong intolerance to gluten, A protein found in wheat, barley, rye, and also in oats that have not been specifically manufactured to be gluten-free. In people with celiac disease, gluten damages the lining of the intestines. This can prevent them from absorbing nutrients and cause a variety of other symptoms. When food enters the stomach, it’s broken down into tiny digestible particles which then travel through the small intestine. The small intestine is lined with vii, tiny finger-like projections that absorb nutrients from the food passing through. With celiac disease, gluten damages the intestine and causes the villi to break down, leaving a smooth lining that can no longer absorb nutrients.

Janice Arnold (03:47):

To confirm the diagnosis of celiac disease, Daniel’s gastroenterologist recommended an endoscopy, a procedure where a thin tube with a camera is inserted through the mouth. To examine the digestive tract, Daniel was scheduled for an endoscopy. Two weeks later after the procedure, the gastroenterologist told Daniel’s parents that he observed some inflammation in the intestine, but they would need to wait until the pathology came back to truly know if he had celiac disease.

Vanessa Weisbrod (04:13):

During an endoscopy, a gastroenterologist can gather several pieces of information to aid in the diagnosis of celiac disease. During the procedure, the physician visually inspects the lining of the small intestine for any sides of damage or inflammation such as scalloping or flattening of the intestinal villi. Small tissue sample biopsies are taken from the lining of the small intestine. These samples are examined under a microscope to look for characteristic changes associated with celiac disease like villous atrophy, increased intraepithelial lymphocytes, I crypt hyperplasia. The degree of damage to the intestinal lining observed during the endoscopy can help determine the severity of the disease. An endoscopy can also help rule out other gastrointestinal conditions that may present with similar symptoms to celiac disease like Crohn’s.

Janice Arnold (05:04):

One week later, the phone rang. Daniel’s mom was shocked when it was the gastroenterologist nurse calling to tell her that the biopsy for celiac disease was negative. They believed that the inflammation was likely due to a minor infection. They recommended following up in six months to repeat the celiac blood test. If symptoms persisted,

Vanessa Weisbrod (05:23):

Viral bacterial or parasitic infections can cause inflammation in the small intestine. Common pathogens include norovirus, rotavirus, salmonella, kaob, backer, and e coli. Because celiac disease, other food allergies or intolerances can cause inflammation in the small intestine as well. For example, lactose intolerance, milk protein allergy, and certain types of food sensitivities may lead to intestinal inflammation.

Janice Arnold (05:51):

Daniel’s symptoms did not go away. They had months when things felt okay and months when things felt terrible. Over the next three years, Daniel’s health continued to decline. He experienced stunted growth, chronic fatigue, and malnutrition. Despite numerous visits to the gastroenterologist, his condition remained a mystery. The doctor suggested dietary changes and prescribed several different medications, but none brought relief to Daniel’s issues. During this three-year period, his pediatrician kept checking his tissue transglutaminase levels, and each time they were elevated, sometimes only slightly and other times more than five times normal. Finally, Daniel’s parents feeling desperate and determined to find the root cause of his struggle, sought a second opinion from a pediatric gastroenterologist in a neighboring city. The new gastroenterologist decided to repeat the endoscopy with a more extensive set of biopsies. He mentioned that the original biopsies did not mention a biopsy taken in the duodenal bulb.

He described it as a place where celiac disease can sometimes hide. Three days after the new biopsy, Daniel’s parents got the call. The results revealed the unmistakable signs of celiac disease. Daniel’s parents were both relieved to finally have a diagnosis and frustrated that it took three years to uncover the truth. Their new gastroenterologist explained that the first endoscopy may have missed celiac disease if it was only present in the duodenal bulb at that time, and that it was important that he had a repeat endoscopy so it could be identified and treated to prevent the disease from further wreaking havoc on Daniel’s health.

Vanessa Weisbrod (07:26):

Historically, confirmatory biopsies were obtained from the distal duodenum only rather than the duodenal bulb. However, researchers have observed that some patients with celiac disease have histopathologic mucosal changes limited to the duodenal bulb. Only this subtype called isolated bulb celiac disease has been estimated to occur in up to 12% of individuals with celiac disease. Thus, to improve the sensitivity of biopsies and diagnosis, updated pediatric and adult guidelines now recommend obtaining both duodenal bulb and distal duodenum biopsies. But how can delayed diagnosis be prevented in the future? Do endoscopists need to separate the biopsies into separate containers for pathology review? Does isolated bulb celiac disease relate at all to the levels of TTG in the blood? We’ll discuss this and more on today’s episode of Raising Celiac.

Today we talk about biopsies and celiac disease with Dr. Imad Absah from the Mayo Clinic. Dr. Absah is the Celiac disease program director at the Mayo Clinic, as well as the Vice Chair of diversity, inclusion and wellbeing for the Department of Pediatric and Adolescent Medicine. Dr. Absah also serves as a co-chair of the Celiac Disease Special Interest Group for the North American Society of Pediatric Gastroenterology, hepatology and Nutrition. He has been involved in so many national celiac projects and I’m to be able to call him a friend and cos soccer parent as we frequently find ourselves cheering our sons on while together at medical conferences. Welcome Dr. Absah to raising Celiac.

Dr. Imad Absah (09:05):

Oh, thank you for having me. Thanks for the kind words, and yes, soccer is a big deal in my household.

Vanessa Weisbrod (09:11):

We love it, don’t we? Oh,

Dr. Imad Absah (09:12):

We just love it. It’s just too much driving.

Vanessa Weisbrod (09:16):

That is for sure. So before we get into your extremely interesting study on isolated bulb celiac disease, can you tell our listeners about your interest in celiac research and what sparked you getting involved in this area of study?

Dr. Imad Absah (09:30):

This goes back to time of my training as a fellow in pediatric gi, and this is before we had our second child. I saw a lot of patients come to Mayo for second opinion, sometimes third opinion, and truly what their problem was, they didn’t have enough education or they were just told your blood workers is positive, you have celiac or even undergo a biopsy. And then after that there was no guidance or education and it’s a lot to take on if you are a family with a new member who’s going to be on a restricted diet, it’s a major lifestyle change and a lot of those kids had some persistence symptoms. So I felt like there’s a gap. There’s a gap in knowledge, there’s a gap in care and there’s a gap in research unfortunately in celiac disease. And I felt that is something that I can really help with.

And then a little bit after that, we had a child, our second boy who’s a soccer player who has food allergies and some other GI problems and he’s on a restricted diet and I truly understood what does it mean to be the provider and the family as a patient who needs to be on restricted diet. And I think that also the combination made it the right fit I think, and I’m very happy that I chose that and I met a lot of great people like yourself and other collaborators we work with through this journey and I’m very happy with it.

Vanessa Weisbrod (10:47):

That’s so amazing. It always helps when you can sympathize with what your patients are going through. So can you talk to our listeners about your recent study on isolated bulb celiac disease in children? What were your objectives and key findings?

Dr. Imad Absah (11:00):

There has been many updates to the way to Diagnos celiac and the approaches, and there’s a lot of debate. You do biopsy, you don’t do biopsy for the most part when you do the biopsy. The leasing guidelines always said you could grab a biopsy from the duo. And for the listeners who are not familiar with the GI anatomy, the polyp is a very, very short segment of the small intestine that basically is the first part right outside the stomach before the du addin. And historically people have avoided grabbing a biopsy from there because there the tissue tend to be a little bit more commonly irritated by the stomach acid. There are glands called Bruner glands that produce acid than alkaline solution to protect the small intestine from the acid. So people said, well, there’s always some changes. It’s not clear if it’s ciac or not, we’re not going to do it.

But then the guidelines said, no, do the biopsy, but didn’t us, we need to separate those biopsies or not. And I’ve had seen many patients where they have missed the diagnosis because someone just bypassed the bulb, went straight to the second or third party they want and grabbed the tissue or they grabbed the biopsy and not sure where it is from. And I thought this might be just peptic du adenitis or mild rotation from the acid. It’s not celiac and the diagnosis was missed. So our objective was to look at our practice in two centers, Mayo Clinic and University of Illinois, Peoria, where we looked at all the pediatric celiac biopsies that we know we have separated the about biop. And then I wanted to answer two questions. Did we increase the sensitivity and find more patients? And was there cases where it was confusing, where the biopsy was taken from and separating them made it easier for the pathologist to identify?

And the short answer is yes, we increased the identification of patients with celiac that would have been otherwise missed by at least 10%, I’ll say 10 to 15%. And about one third of the time the pathology was blinded to where the biopsy was taken from and they didn’t know. So this would have been attributed as a normal variation of the bulb and a diagnosis would’ve missed too. So I think the key findings are, at least in patients who have milder symptoms and their celiac serology is less than 10 times the upper normal. If limbic, they absolutely need to separate their blood bios.

Vanessa Weisbrod (13:24):

That’s so interesting. And you think you’re going in for a biopsy to confirm celiac disease, you often don’t think about the fact that if the biopsy is taken in the wrong place or not taken in an additional place that you could miss the diagnosis and be told you don’t have celiac disease when in fact you really do. So is there a difference between the classic celiac disease that you see in the duodenum and the isolated bulb celiac disease, either clinically and pathologically or both?

Dr. Imad Absah (13:54):

That’s a great question and I want to add one more thing about what you just said, which is a hundred percent accurate. Yes, number of biopsies is important, not only where are they from, and also number celiac is patchy and you could miss it. And I would hate for any patient to undergo sedation and visit a procedure and come out and say, oh yeah, we didn’t find it. And that’s a lot of cumbersome, burdensome and patients continue to deal with unfortunate symptoms. So yes, location and number biopsies is important. There have been a previous report and they called it previously ultra short Celia, meaning it was in this ultra short segment of the bowel that’s called the WA bulb. There was a few other studies they call it like we did in our paper, which is isolated bulb celiac disease, which I think is more appropriate.

I’m not sure the ultra short, I like that part. And those patients actually tended to be older at the age of diagnosis, at the time diagnosis. And they also had milder symptoms like they had less amount of diarrhea and anemia, which I think may have contributed to them being missed for a longer time or had a delayed diagnosis, which I think may be why they are a little bit older at the time diagnosis. So that’s from clinical standpoint. From lab standpoint, 90% of the patients who we identified who have only isolated bulb only in the bulb disease, celiac disease, their serology was about three times apart. The normal limit only if the normal limit, let’s say was four, most of those people were like twins or 15 only. And a lot of times that would be regarded, oh, it could be false positive. And that’s again another reason why they would be missed.

Where most patients who would have what’s called conventional or typical celiac disease, their TTG was much, much higher. Anywhere from 10 15 times upper range of normal pathologically. Those patients for the majority, they have only disease in the bone. There was nothing beyond that. Now in the histology and pathology of celiac disease, there’s this commonly used classification that’s called marsh classification and not trying to use very complicated tables or classifications, but it just goes about the stages of inflammation. And the first stage, these finger-like protrusions that we call vili, they’re still intact, but there’s a little bit of increase why the blood cell is called lymphocyte and that itself doesn’t justify a celiac diagnosis. So some of those patients with isolated bowel were about 30% of them had some lymphocytes, but there was absolutely removal ine. So where the flip of that most of the patient who had diffused disease had involvement of the bulb at the same time. Meaning again, if you have a diffuse disease and your titers are very high, if you get a biopsy from bulb or dis though you’ll find it. But if you have a lower value, you have milder symptoms, you could easily miss it if you do not get the bulb biopsy by itself.

Vanessa Weisbrod (16:44):

So interesting. So can you elaborate on the significance of identifying isolated bulb celiac disease early in a child’s development and are there any implications on their growth or development?

Dr. Imad Absah (16:56):

So I want to actually bring up a recent case that I took care of after we actually published the data and I felt very happy that I can share some data with the family. We had a kid that I saw for a second opinion and wasn’t told, you don’t have celiac and has been dealing with nausea, dominant pain, a lot of symptoms for a long time. And when I looked at the biopsies, I really couldn’t tell whether they’re taken from, it just says to what? And they didn’t label it that I couldn’t tell and I also couldn’t tell where they were obtained from. So I don’t know if they did the right thing or not, they may have and I just couldn’t figure it out. So we had this lengthy discussion, I showed them what we’ve done and I said the other option is unfortunately to go another endoscopy to see what’s going on.

And we were able to find the diagnosis. So they were very happy and the patient had a lot of almost tearful emotions about oh my goodness, and a few weeks into it they got better. That’s amazing. I say for the most part, development and growth is very important in children in general and I don’t think there’s major difference between celiac and isolated to the ball board. Conventional, both cohorts, if they don’t get diagnosed, they’re going to continue to deal with symptoms, they’re going to have problem with malnourishment and then again it’s a major pressure on them and their family. The quality of life is not good when you’re having symptoms and you can’t identify what’s goes and how to take care of it. And I always say if you get diagnosed very early, you’re going to deal with this much longer unless we take care of it. Your brain is growing, your bones are growing and addressing this early is very important and paramount to prevent complication down the earth.

Vanessa Weisbrod (18:33):

So true. It’s so true. Our patient here, the same story of they suspected celiac disease, did the biopsy, we’re told that they didn’t have celiac disease, but in fact that they did. And then it was years later of suffering from symptoms to really get to that answer, it’s hard enough to get diagnosed and there is so much trust that we put in our providers to do the right thing. And so I really hope that you talking about this, other providers will hear it and hopefully not miss those bulb biopsies. So how common is this isolated bulb celiac disease in pediatric patients compared to classic celiac

Dr. Imad Absah (19:14):

Data is limited. I would say maybe four studies including ours, maybe three to four studies, and that range from 12 to 15%. So in previous paper it was about 12% In the cohort that we looked at, which was about 244 patients, 15% have disease only limited to the bone. And again, those patients would have been easily missed if they didn’t have the bone biopsy obtained. So I would say one out of 10 to two out of 20, something like that.

Vanessa Weisbrod (19:43):

I mean that’s a huge number. We were just talking about the celiac cruise where there are 700 people with celiac disease. If one in 10 of those people didn’t have that biopsy taken, we would’ve missed a whole lot of people who could be on a gluten-free cruise.

Dr. Imad Absah (20:01):

Yes, and like you said, when the patient have big trust in us and we have been always, and we went to this field because we want to make people feel better and we want to make sure that we’re doing the best with the least invasive and these expensive thing. So the goal of this whole thing was to do the right thing from the first time so you don’t have to go back again or subject your patient to a gluten challenge of longer duration of symptoms.

Vanessa Weisbrod (20:27):

Absolutely. And I also wonder, we hear all the time about people who had a celiac test and then it was negative but they took gluten out of their diet and they feel better if some of these may have also been a misdiagnosis.

Dr. Imad Absah (20:42):

Absolutely. And each case is different and it has to be looked at by its own data and what been done and how that initial diagnosis was made. But yeah, that is absolutely true.

Vanessa Weisbrod (20:51):

Did you see any notable difference in symptoms and presentations between those with isolated bulb celiac and classic celiac?

Dr. Imad Absah (20:58):

So our cohort had about 244 patients as I said earlier, and about 15% of them we had isolated poly. So the sample size wasn’t as big. That I can tell a lot of differences. But if I put all the data together, what has been published before from Europe and from us, most of those patients had about the same number of symptoms in total, like how many symptoms did you present with? But they tend to be mild, they tend to be some mild nonspecific symptoms. They tend to have very subtle nausea or something like that. So that could be easily disregarded or missed where patients who had diffuse celiac or conventional celiac, they tend to have more symptomatic like diarrhea, anemia, more overt symptoms of malabsorption and maybe that’s why they get diagnosed sooner or earlier at their ages, usually younger at the time diagnosis.

Vanessa Weisbrod (21:50):

What about genetics? Any differences in the genetics of the patients?

Dr. Imad Absah (21:54):

We didn’t see much of genetics. There was something hinting toward DQ eight, but we truly, we didn’t find that much of difference in our cohort.

Vanessa Weisbrod (22:03):

Got it. Are there any specific risk factors or predisposing conditions that would be associated with development of the isolated bulb celiac?

Dr. Imad Absah (22:11):

I don’t think we have enough data to know the answer to that. I actually am curious to know what’s different about why some people have disease limited to the bulb and why others are diffused. And I think there’s one thing that hasn’t been answered yet and might be hard to answer, which is what happened with those patients if they don’t get treated, do they finally move to a conventional diffuse celiac or not? And I don’t know that we know the answer unless you actually biopsy them and keep them on the diet and they continue to have problems and see what happened, which no one would do. So it’s very hard to answer. I do think they are a unique type of patients. They have different presentation, they have mild or serology and milder symptoms, but I don’t know why it stops at the pub. In some patients where it has diffused presence in on the other patients, they do tend to be older and we know from a lot of previous data that younger patients have more symptomatic celiac and that’s why they get diagnosed younger. So yeah, more to do and more to learn I think with celiac research.

Vanessa Weisbrod (23:11):

Your next research project, of course the only current treatment for celiac disease is a gluten-free diet. Did you notice any difference in response to the gluten-free diet in the patients with isolated bulb celiac?

Dr. Imad Absah (23:24):

We did not. They both got better in a pretty similar timeframe, like weeks and months into recovery starting after the gluten-free diet transition. The serology in our cohort, it took about similar time. So if you look at the sample size and look at the rate, how many months did it take to normalize their TTG? It was pretty similar. It was about 15 months. Now there was a different study from Europe said that these kids, their serology normalize faster. We didn’t see that. So I think the response to gluten-free diet is pretty similar between both cohorts,

Vanessa Weisbrod (23:55):

But the message is the same strict lifelong gluten-free diet.

Dr. Imad Absah (23:58):

Yes, absolutely. Until we can start offering our patients something else, that is the only message we are doing now.

Vanessa Weisbrod (24:05):

Absolutely. So are there any ongoing or future research initiatives planned to look at this isolated bulb in celiac disease in kids or potentially in adults?

Dr. Imad Absah (24:15):

I think what we do in pediatrics also affect adult practice. So I know they are thinking about do we need to separate biopsies or not? And I think having a larger cohort like adult celiac patients would be very informative in one adult study before they found those patients have different type of age group like we did. So I think bigger dataset will give more information and hopefully can answer some of the questions that we couldn’t answer today. So yes, hopefully future collaboration including adult data and pediatric data can shed more light on what’s different about those isolated celiac patients and how do you treat them differently?

Vanessa Weisbrod (24:55):

For sure. So as you and I have talked about, it’s really hard to listen to stories like Daniel’s and the patient that you spoke about as well. No one wants to see a child go undiagnosed for so long. What practical recommendations would you offer to healthcare professionals for identifying and managing isolated bulb celiac so that other kids don’t have to go through this experience?

Dr. Imad Absah (25:16):

Well first advice is always listen to the patients and the families always revisit the initial diagnosis. If they were told that always there’s no harm in really looking at everything that has been done and then put those together and decide how to proceed. In the celiac ward, a lot of patients are misdiagnosed or they are waiting longer to be diagnosed or sometimes other way around. They were told they don’t have celiac but they don’t and you need to help them with that. In the isolated bone celiac patients, they all had mire symptoms. They all were older at the time of diagnosis and their TTG values were less. And then the era where we talk about maybe we don’t need a biopsy when the TTG is more than 10 times upper range of normal, if your patient doesn’t have a TTG value that high and you are going to proceed with an upper endoscopy to confirm the diagnosis, please obtain at least one, preferably two biopsies from the bowel and I prefer that you separate them so the pathologist knows that this is a bowel biopsy where the others are from the distal wain to help improve the diagnosis and hopefully avoid further scoping a further workout for your patients.

Vanessa Weisbrod (26:25):

I think also for data collection too, right, having them separated, will more long-term help you be able to look back at this?

Dr. Imad Absah (26:32):

Absolutely, because when we wanted to do this, initially we had about almost 500 patients, but when we wanted to look specifically at the isolated bulb, we had to only include the ones that their bowel biopsy separated. And that was 2 44. And when I was talking to Mike, I saying imagine if we had the whole 500 sample to look at. So yes, for data for cleaner cohorts and more informative information, that would be very helpful.

Vanessa Weisbrod (26:58):

So before I let you go, I want to mention to our listeners how truly amazing I think you are. As I mentioned in the intro, co-chair of the celiac disease special interest group at NAS began. Can you tell us more about this group and some of the things you’re working on across North America?

Dr. Imad Absah (27:14):

Well, I think you are biased a little bit because we are good friends, but thank you for the kind words. So Celiac interest group inside the National Society for Pediatric GI is a cohort of pediatric gastroenterologists, dieticians, nurse practitioners, and anyone who is actually a healthcare provider interested in providing care to celiac disease. Everybody’s welcome to join our group and those people who are from multiple institutions through United States, Canada and actually a few from Mexico are the people who would like to work with patients with celiac disease, disseminate the education, make sure that the available education out there is up to speed and up to date, provide a platform where we all can collaborate on gathering larger dataset. As we mentioned during this podcast, one of the biggest limitation is having enough data to generate significant outcome. So having multiple people from different institutions throughout the country is great, and the end goal of this is to optimize care for celiac patients, optimize education and generalize it, make it available for everybody, primary care provider, pediatricians, family practitioners, everybody who takes care of people with celiac disease.

We’re working on multiple exciting projects and you are leading very important one of them, actually more than one relating to education and making sure that what we put on our websites is up to speed and up to date. We also are working on two important projects that I really think will change the approach to celiac in North America. One is looking at the different performance of the serology testing in North America. The European guidelines talks about the TTG value and do you midwives here now not. And we are finally trying to tackle that by looking at all the different lab essays or lab testing that we have and predictability of celiac disease and soon to come. We’re presenting this at the digestive disease week and hopefully more to come with that. We’re also looking at what’s called mucosal healing and to certify that celiac disease is significant injury to small bowel where we absorb a lot of our nourishment and attrition and there’s a lot of data to that.

The healing is not a hundred percent like we think it is, and most of this data is extrapolated from adult or small pediatric study. So we’re trying to look at that too, because I think when we put those both together, we could actually say with more confidence, do you need a biopsy or can we sometimes omit the biopsy? Or how do you approach that, which is a very big ask now in the world of celiac disease, there’s a lot more to come from the celiac inter group at NASPA began. So stay tuned and hopefully we’ll update you guys.

Vanessa Weisbrod (29:50):

Thank you so much, Dr. Absah. This has been such an amazing discussion and I’m just so grateful for all of the incredible work that you’re doing. Now let’s find out where our patient Daniel is today.

Janice Arnold (30:05):

Daniel is now 12 years old and thriving in the sixth grade. He is once again filled with cheerful energy and harnesses his energy by running on his school’s cross country and soccer teams. He has no problem sticking to the gluten-free diet and is grateful that he could eat gluten-free food in his school’s cafeteria. In his own words, Daniel says, I don’t really remember the drama of getting diagnosed, but I’m grateful that my parents were advocates for me and found the right doctor to figure out. I have celiac disease. The gluten-free diet is hard sometimes, but I know it will keep me healthy and let me do everything I want to in life. I hope that lots of doctors will listen to this podcast episode so that no other kid has a delay like I did.

Vanessa Weisbrod (30:53):

And now a word from the Global Autoimmune Institute

Global Autoimmune Institute (30:57):

Raising Celiac is brought to you by the Global Autoimmune Institute. We fund scientific research in medical education to improve diagnosis and treatment in autoimmune disease. Please visit our for the information and resources you need. That’s autoimmune We hope you enjoy raising celiac.

Vanessa Weisbrod (31:22):

Thank you for listening to this episode of Raising Celiac. A special thanks to the generous contributions from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists to claim your continuing education credits. For listening to today’s episode, please visit DME dot children’s celiac. If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts. For more information, check us out on social at Boston Children’s Celiac on TikTok, at Children’s Celiac, on Twitter, or at Celiac Kids Connection on Instagram. Have a great month.