Common Nutritional Deficiencies that Affect Those with Non-EoE EGIDs
Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Bethany Doerfler, MS, RDN, a clinical research dietician specializing in lifestyle management of digestive diseases at Northwestern Medicine. Ryan and Holly discuss managing nutritional deficiencies in patients with non-EoE EGIDs and a study Bethany worked on. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:50] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz. [1:17] Holly introduces today's topic, common nutritional deficiencies that affect those with eosinophilic gastrointestinal diseases that occur in the GI tract lower than the esophagus (non-EoE EGIDs). [1:31] Holly introduces today's guest, Bethany Doerfler, a clinical research dietician specializing in lifestyle management of digestive diseases, including gastroesophageal reflux disease, motility disorders, and eosinophilic diseases. [1:45] Bethany currently practices as part of a multi-disciplinary team in a digestive health institute at Northwestern Medicine. [2:03] Bethany began working with this disorder almost 20 years ago. She worked with Dr. Gonsalves and Dr. Hirano at Northwestern. Dr. Gonsalves invited her to work with EoE patients. Bethany had not heard of EoE. [2:59] Bethany says the lens that we've used to look at food as the trigger and also a therapeutic agent in the esophagus, we're looking at in non-EoE EGIDs as well; at the same time, trying to make sure that we're honoring the other parts of our patient's lives. [3:27] Before Bethany started working in GI at Northwestern, she worked in the Wellness Institute, doing nutrition for patients at Northwestern. Bethany has a research background in epidemiology and she wanted to see better nutrition research in GI. [3:56] Through a friend, Bethany connected with the Chief of GI at that point. Northwestern had never had a dietician working in GI. [4:08] Bethany is pleased to see a trend in healthcare of thinking about the patient as a whole person, including diet, psychological wellness, physical health, exercise, sleep, and more. Bethany wanted to see more research on GI disorders. [4:38] Bethany says that eosinophils in the esophagus indicate that something is irritating the tissues, such as reflux, food triggers, aeroallergens, and other things. [4:58] Eosinophils do belong in the stomach, the small intestine, and the colon. The challenge for researchers has been, how many, where are they supposed to live, and what are they supposed to look like. [5:10] There is eosinophilic gastritis, where eosinophils can infiltrate the stomach, causing a lot of inflammatory responses that make patients sick. We see that in all parts of the small intestine and less commonly, in the colon, as well. [5:32] It's a good reminder for listeners that eosinophils are white blood cells. When they're in the tissues, they can swell things up and cause the body to have this inflammatory response in these lower GI tract organs. [5:49] The symptoms patients can experience are vomiting, diarrhea, and abdominal pain, among other things. [6:14] The nomenclature for this subset of eosinophil-associated diseases has changed and Bethany says to hang tight, there is lots of work underway to nail this down further in the next couple of months to a year. [6:29] The last guidelines were published by a Delphi Consensus in 2022. The experts in the field got together and voted on the scientific accuracy of certain statements to develop cut points for how to grade. [6:48] The experts are asking questions like: What counts as eosinophilic gastritis? What do we think are some of the symptoms and the clinical findings so that we all are looking at things through the same lens? [7:02] To get to these consensus statements, there's a lot of discussion, agreement, and good collegial discussions about making sure that we're looking at this accurately. [7:12] We're trying to give the right names to the right disorders and give clear diagnostic criteria, so that we're helping our patients get a diagnosis, and we're not labeling something incorrectly and sticking someone with an inaccurate diagnosis. [7:36] The proper terminology is eosinophilic gastritis in the stomach, eosinophilic enteritis in the small intestine, eosinophilic colitis in the colon, and eosinophilic gastroenteritis where the stomach and the small bowel are involved. [7:53] There's more to come on the clinical criteria of what makes that diagnosis but we're getting the names and the numbers right. [8:03] Holly agrees that having the symptoms given a named diagnosis is important to patients, knowing that researchers are looking into their illness. [9:00] Bethany notes that the diagnosis also means that there are opportunities for medical therapy, cut points for which medicines or therapies work or not, and billing codes. If we can't bill insurance companies, patients might not get certain services. [9:28] Ryan tells how beneficial it was for him to have access to multi-disciplinary teams and see specialists he might not have seen without the proper diagnosis and just thought it was a GI issue. He was fortunate to see a dietician and start dietary therapy. [9:53] Bethany says the dietician's priority is the patient's health and wellness. [10:13] These disorders carry clinical non-gastrointestinal manifestations: fatigue, concern over what to eat, food access issues, family support, and other food allergies. These are important things for a dietician to consider. [10:37] Are patients growing as they should? Do they feel like they have enough to eat? Do they feel excluded in social settings? There's a list of important things that we want to be looking at. That's why it's important to have a multi-disciplinary approach. [11:07] First, Bethany wants to see that her patients are physically and nutritionally well. That's a priority if we're going to try to get rid of some of the food triggers that could be exacerbating the disease. [11:20] Before Bethany takes anything out of someone's diet, she wants to make sure that they're getting enough of the good stuff to help them feel good and grow. [11:29] From a diet therapy perspective, Bethany is trying to apply a food removal or substitution protocol to other spots outside the esophagus. They're seeing that some of the triggers are very similar, both in the stomach and small intestine. [12:09] Dr. Gonsalves, Dr. Hirano, and Bethany did a study, The Elemental Study, where they wanted to uncover if food proteins carried the same trigger risk in the stomach and small intestine as they do in the esophagus. [12:35] They put their patients on a hypoallergenic elemental formula for a period, followed up, and looked at their biopsies of the stomach and small intestine. Fifteen wonderful patients made it through the trial. [12:56] One hundred percent of the patients achieved disease remission and felt better. There were some genetic alterations in the patients. Then they started the process of reintroducing foods over the year. [13:15] That was not part of the original grant but was the team's clinical interest to see what it is that people are allergic to. Some of the common suspects: wheat, dairy, eggs, soy, and nuts, were found to be very common triggers for EoG and EoN, as well. [13:47] The benefit of working with a dietician as part of your team is, first, we can remediate things the disease has caused nutritionally, and second, we can think about how diet can be a therapeutic tool to use with medications or instead of medication. [14:15] If you want to use nutrition therapeutically, you don't have to stay there if it's not the right time to be taking things out of your diet. We have some good, safe, medical therapies. You can find your food triggers but you don't have to pick that lane forever. [14:42] Holly and Ryan relate their experiences with traveling abroad and going on medical therapies when they can't stay on their diets. [15:57] Bethany says low levels of vitamins and minerals in the blood can be caused by a disorder or an elimination diet. In the U.S., dairy is the biggest source of protein for young kids. It's also the biggest source of calcium and vitamin D. [16:22] Dieticians often say, if we are going to use dietary therapy for EoE or non-EoE EGIDs, we have to think of this as a substitution diet. If we remove something, we have to replace it with something equally nutrient-dense. [16:39] Bethany and her group look at serum values of Vitamin D, B12, and iron they assess for patients. For kids, instead of drawing blood, they piece together what they're taking against what they need and see if there are gaps to fill with food or supplements. [17:32] In patients with non-EoE EGIDs, Bethany says we see the disease intersect with the food supply. When we take milk out, we're cutting the biggest source of calcium and Vitamin D. We have to replace calcium and Vitamin D. [17:55] In the 1950s, a public health law allowed wheat to be enriched with folic acid and other B vitamins and iron. When we cut out wheat, our patients aren't getting enough iron or B vitamins. We have to replace those. [18:16] For patients who have eosinophils in their stomach and small intestine, their absorption in the small bowel may be directly impacted. [18:26] People can have low levels of protein in their blood, maybe because they're eating insufficient protein or maybe because the disease doesn't allow them to absorb protein sufficiently when there's swelling in the small intestine. [18:44] There are other nutrients, like zinc, for people who have diarrhea, and magnesium if you can't eat a lot of whole grains and nuts, There are quite a few nutrients that Bethany is broadly looking at. [18:54] Based on the absorption in the small intestine, patients' doctors need to look at their B12, folic acid, iron levels, and Vitamin D. [19:12] Holly loves Bethany's terminology of replacing, not just eliminating, foods. She will use that terminology with her patients to make it feel more supportive for them. [20:40] A lot of people want to get all their nutrients through their food. That's not always practical. Vitamin D is hard to get exclusively in your diet if you're not drinking milk or eating wild-caught fish. You have to rely on fortified foods or add supplements. [21:15] One, we want to take a look at your diet and ask how are your calories. We want to make sure you're eating enough. Two, if we suspect there are some vitamin deficiencies, we check your blood or just empirically supplement you. [21:36] Supplementation should be done carefully. There are some vitamins where you can get too much of a good thing. Vitamins stored in the fat need to be at levels sufficient for repletion, dictated by age and gender. Dieticians know what to recommend. [22:19] For patients who have non-EoE EGIDs, some have tentative swallowing, so Bethany tries to do as many liquid or chewable safe options for supplements as possible. [23:46] Holly works with patients who have feeding difficulty, so she appreciates the liquid and chewable supplements for easier swallowing and quicker absorption. [24:08] Bethany mentions that some fortified oat, corn, and rice breakfast cereals are highly enriched with B vitamins and iron. Look at the labels. It can be a way to layer in more vitamins without purchasing a supplement. [25:24] Holly doesn't think patients understand how valuable a good dietician can be. She had one patient with celiac who was taking a supplement with gluten in it! She reminds listeners to always consult your care team before making any changes to your treatment plan. [25:59] Bethany's favorite thing to talk about is foods and where to find what. If listeners have questions, she is happy to post answers on the website. [26:25] The American Academy of Pediatrics says a cup of vitamin-fortified juice a day is not too much sugar and is a good source of Vitamin C and other nutrients. The calcium and Vitamin D you get from a cup of fortified juice is very value-available. [26:46] In the non-dairy drink world, some are nicely fortified and some are not. If you make your almond milk, you're missing out on the fortifications. [27:11] Bethany likes some of the fortified juices and some of the enriched non-dairy milk options. Those are the best ways to get calcium and Vitamin D for people who need calories. Instead of water with meals, substitute an enriched drink with meals. [27:33] Some people struggle with protein, probably because of their level of food restriction. The typical animal proteins are great. If you can do soy, a cup of soy milk has eight grams of protein. Soy is a complete protein that mimics animal proteins. [28:04] Cook your cereal in soy milk. Use it as the base of a smoothie. This is before getting into protein powders. Try legume-based proteins, if you can handle legumes. Your supplements have to be personalized. That's the tricky part. [28:30] If you have a lot of food allergies or intolerances, it may be worth talking to your gastroenterologist, allergist, or dietician about adding elemental formula as a supplement. Bethany uses it often with food allergy patients as a safe supplement. [29:31] Bethany primarily treats adults but also young adults transitioning from the pediatric side into the adult world. Sometimes a feeding difficulty follows patients into adult treatment. We need everyone at the table to treat this immune-mediated disease. [30:32] Patient advocacy groups like APFED have ways to help you find dieticians. Also, the Academy of Nutrition and Dietetics has "Find a Specialist" on their website. Eatright.org. Dieticians can do telehealth if you are not near one. [31:45] If the practice that you're in doesn't have a dietician, you could gently suggest they have one join the practice, or consult with the practice. Patient advocacy is strong. [33:12] Bethany talks about getting an appointment with a dietician. On the pediatric side, it has to do with the billing code. Ask your insurance if they cover medical nutrition therapy, Billing Code 97802, and for which diseases. Insurance may have stipulations. [34:14] If medical nutrition therapy is not a covered benefit, ask the dietician if they can do a sliding scale. Holly says she has seen plans in several states where the patient can use the HSA or FSA card to pay for medical nutrition therapy. [34:49] Bethany believes in the pediatric world, where growth and development are concerns, there's a little bit better coverage. [34:59] On the adult side, if Bethany has other diagnoses, like high blood pressure, or diabetes, she is also billing for those because she makes sure what she recommends is also in line with what is good for their heart and wellness in general. [35:55] Bethany was intrigued to learn food proteins do trigger disease activity for our patients in the stomach and small intestine, just as in the esophagus. [36:20] In the Elemental Trial, they were surprised to learn people with non-EoE EGIDs had more allergies than expected. They were more likely to have more than just one or two. They were also more likely to have rare food allergies like legumes or grains. [36:43] A patient may want to learn all their food triggers, but they may be a highly allergic person and it may not be worth trying to remove all their food triggers. [37:06] Bethany wants to remind listeners that the diet approach should be a substitution diet. If you take things out, you've got to replace them with other plants. [37:18] There's great crossover nutrition between fruits and vegetables. Seeds are great as a fill-in for nuts. There are plenty of other whole grains out there besides wheat. There are lots of good ways to get that nutritional balance into your diet. [37:31] For anyone who's eliminating a food group, even if you're substituting it, it's a good idea to talk to your doctor about filling in with a good multivitamin, multimineral supplement. [37:59] Bethany says it's fun working with colleagues to look for other ways to look at this nutrition lens for patients with Non-EoE EGIDs. [38:14] They are looking at noninvasive ways to find eosinophils to go faster with helping people find their food triggers without having to scope them. [38:28] Bethany is hoping with that research to be able to help people learn how they can cheat, like having pizza once a month if they are allergic to dairy. That's a question for your care team, but we don't have a great science-based way to answer that. [38:53] As we study more noninvasive ways to get at eosinophilic activity, we can give patients a little bit more freedom and quality of life. That's what Bethany is working on next. [39:58] Holly thanks Bethany Doerfler for joining us on Real Talk — Eosinophilic Diseases. For our listeners, to learn more about eosinophilic disorders, please visit APFED.org and check out the links in the show notes. [40:11] If you're looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder at APFED.org/specialist. [40:21] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at APFED.org/connections. [40:34] Holly thanks Bethany for joining us today. Holly also thanks APFED's Education Partners Bristol Myers Squibb, Sanofi, Regeneron, and Takeda for supporting this episode. Mentioned in This Episode: Bethany Doerfler, MS, RD, Clinical Research Dietician specializing in lifestyle management of digestive diseases at Northwestern Medicine Dr. Nirmala Gonsalves Dr. Ikuo Hirano (In Memoriam) The Elemental Study, Gonsalves, Doerfler, Hirano Academy of Nutrition and Dietetics APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/specialist apfed.org/connections Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, Sanofi, Regeneron, and Takeda. Tweetables: "The lens that we've used to look at food as the trigger and also a therapeutic agent in the esophagus, we're doing that in non-EoE EGIDs as well, and at the same time, trying to make sure that we're honoring the other parts of our patient's lives." — Bethany Doerfler, RD "We are trying to give the right names to the right disorders and give clear diagnostic criteria so that we're helping our patients get a diagnosis, and we're not labeling something incorrectly and sticking someone with a diagnosis that isn't accurate." — Bethany Doerfler, RD "The diagnosis also means that there are opportunities for medical therapy, cut points for which we decide if medicines or other therapies work or not, and billing codes. If we can't bill insurance companies, patients may not be privy to certain services." — Bethany Doerfler, RD "Look at the [fortified cereal] labels. You'd be surprised how much they look like a multivitamin, not only for B vitamins but for iron. … It can be a fantastic way to layer in more vitamins without having to think about purchasing a supplement." — Bethany Doerfler, RD "There's great crossover nutrition between fruits and vegetables. Seeds are great as a fill-in for nuts. There are plenty of other whole grains out there besides wheat. There are lots of good ways for us to get that nutritional balance into your diet." — Bethany Doerfler, RD
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