Q&A

Unfortunately, the EoE33 mouse model does not allow us to test immune responses in individual patients. However, the knowledge we gain from this model will hopefully increase our understanding of the disease process and develop better diagnostic tests and treatments for EoE.

Great question. Animal models suggest that tolerance to food proteins can be broken in adult mice, so I think the disease is not always present from birth or early childhood. I do think that many patients have subclinical (undetected) barrier disruption and asymptomatic esophageal eosinophilia prior to the onset of symptoms. In fact, a recent article showed that many first-degree family members of EoE patients have asymptomatic esophageal eosinophilia (see https://pubmed.ncbi.nlm.nih.gov/33221551/). This article suggests that common environmental exposures among family members may be provoking disease. We have also shown that patients with IgE-mediated food allergy who are at a very high risk of developing EoE may have asymptomatic esophageal eosinophilia (see https://pubmed.ncbi.nlm.nih.gov/30524424/). The requirement for endoscopy has been a major limitation to understand the evolution of the disease process across the lifespan. With newer minimally invasive/non-invasive diagnostics, we may be able to screen individuals without symptoms and follow them longitudinally to definitively answer this question.

The PPI dose is individualized for each patient, but generally it’s considered “high dose”, which is usually two times the usual reflux dose (omeprazole 40mg total per day in an adult, rather than 20mg daily; doses are weight-based for children).

The approved EoE therapy in Europe is the budesonide orodispersible tablet. This is actually the only approved treatment worldwide so far.

The monitoring for EoE is individualized for each patient. If someone has done dietary elimination and all of the foods have been re-introduced and the triggers are known and eliminated, and the EoE is in remission, and no changes are made, then after the scope that shows that it may be reasonable to do a repeat scope in 1-2 years, as long as there are not strictures that still require dilation. The timing of these scopes is an area that’s under active study and discussion.

With an accidental ingestion that happens once, this would be unlikely to trigger EoE. However, if it’s a food that has been eliminated for a while, the body may respond with GI symptoms or intolerances that can be relatively quick but are not usually an immediate-type food allergic reaction.

Typically, once the food triggers are identified, new food triggers do not develop.

The food-induced immediate response is thought to perhaps be like an oral allergy syndrome but localized in the esophagus. This phenomenon is quite new, however, so additional work into the mechanisms needs to be done

I would recommend seeing a feeding specialist who can help you understand your swallowing pattern and provide you with recommendations and strategies to make swallowing more comfortable. Happy to help you personally! Feel free to contact me at hollyknot@me.com.

This is an excellent question. Because peanut butter is a thick and sticky substance, it can actually make the sensation of foods becoming stuck more likely. So when eating something like peanut butter, it’s best to be paired with a crunchy, carrier food versus being used as a dip or food lubricant.

I’m so glad to hear that your son does well with soup! Soup is often a mixed consistency which lots of children avoid as they can be fearful of the multiple ingredients. However, if you have EoE, soups are wonderful meal options as the contents are often soft, easy to chew and the broth makes swallowing easier. 

If you’re having difficulty swallowing, the recommendation of trialing an elimination diet or liquid (formula-based) diet must be determined and recommended by your GI. Medical providers may recommend this option if you or your child are not responding well to treatment via medication.

I’ve had several adults report that using warm (not hot) water helps dissolve the food that is stuck. I haven’t tried it personally but it may be worth a try before heading to the hospital to get it removed.

Yes – There are a number of ways for the community to engage and record their story and perspective. Great question!

Currently, we are asking rare disease community members to submit STAT Act Testimonials to give insight into how the STAT Act will directly impact the rare disease patients’ lives. Last month, more than 600 rare disease advocates made their voices heard during Rare Disease Week on Capitol Hill 2021 in support of legislation such as the Speeding Therapy Access Today, or STAT Act. We need the rare disease communities help to build on this incredible momentum by sharing your support for the STAT Act.

We are asking patients if they would be willing to share a brief quote (1-3 sentences) and an accompanying photo, expressing their support of the STAT Act. Quotes and photos will be shared on social media, on the EveryLife Foundation website, and in EveryLife materials and can be emailed to Adrian Palau-Tejeda at apalau-tejeda@everylifefoundation.org.

Within our RDLA Diversity Hub, we strive to promote expanding inclusion within our rare community by highlighting the diversity of our rare disease community members. Community members are invited to contribute to our Rare Faces of Rare Diseases campaign and provided resources to guide their submission. Visit our website for more information: https://everylifefoundation.org/rare-advocates/rare-diversity-hub/diverse-faces-of-rare-diseases/

Coming soon – A story-bank portal is being created for the rare disease community on the EveryLife Foundation that will operate sitewide on the EveryLife Foundation website. Stay tuned for more details!

The challenges of health insurance coverage and for rare disease patients, specifically in coverage and reimbursement for treatment and the diagnostic odyssey are incredibly important issues as outlined. EveryLife is working to address these issues on multiple fronts. Individual community members are urged to help us ensure that there is greater recognition of these priorities among policymakers by directly advocating to members of Congress and regulators. Opportunities to share your experiences with providers, your diagnostic journey, access barriers are key features of our RDLA program and events such as Rare Disease Week and Rare Across American. Additionally, EveryLife leads policy efforts that are powered by the expertise and participation of patient community members such as our access efforts and National Economic Burden of Rare Disease Study. Stay engaged with work like the Burden Study by joining our RDLA newsletter here: https://everylifefoundation.org/rare-advocates/

In many ways, all of the legislation and policy priorities that the foundation supported as part of Rare Disease Week in some way touch on the economic burden of rare disease. This extends to legislation like the STAT Act, that seeks to accelerate the development of new treatments and cures through the formation of a rare disease center of excellence, aiding in reducing the cost of treatments in the long term. EveryLife also released a National Economic Burden of Rare Disease Study report in 2021 that – for the first time – helped to establish the true public health impact of rare disease, underscoring the urgency in driving policy efforts aimed at funding research, treatments, and reducing the overall costs for families. Additional policy priorities like the support for the extension of COVID-19 telehealth policies also reduce the burden for Rare Disease Patients. Legislation advocated for by patients at Rare Disease Week include: Disease Congressional Caucus, Cosponsor the Speeding Therapy Access Today Act of 2021, H.R. 1730/S. 670, Cosponsor the Newborn Screening Saves Lives Reauthorization Act, H.R. 482/S. 350, Cosponsor the S. 373 the Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act, Cosponsor the Access to Genetic Counselor Services Act H.R. 2144 / S. 1450.

This makes eating processed foods much harder. Here are a few suggestions for snack foods without soy:

• Granola bar: 88 acres
• Crackers: Mary’s Gone crackers super seed crackers
• Cookies: Sweet Lorens
• Potato chips: Kettle one

These are just a few but happy to help you find specific products in specific areas.

Great question! The calcium in the plant-based milks are fortified with added calcium. I would not be able to tell you how to count the protein and with my own patients do not count this as a significant source of protein but only because I do not know and usually my patients have other sources of protein.

Happy if you want to share my slides.

Fats and oils are fine to have throughout the elimination diet. You cannot do dairy fats but olive oil, avocado oil, seed oils, coconut oil are all safe. Even soybean oil would be safe as there is no protein in this oil.