Holidays with Food Allergies and Eosinophilic Esophagitis

Thanksgiving has passed and the winter holidays are quickly approaching.  Many parents who are new to food allergies and restricted diets are undoubtedly panicking, not sure what their kids will be able to eat, if anything at all, and hoping to make the holidays special without focusing on food.  Thankfully, we now have plenty of information at our fingertips.  There are some really good suggestions for dealing with the holidays and any special event, regardless of your dietary needs.  


I just came across a wonderful PDF booklet with allergy-friendly suggestions for celebrating Christmas.  It was put together by Kids With Food Allergies:  http://www.kidswithfoodallergies.org/KFA-Celebrates-Christmas.pdf  Take a look at the recommendations for a food-free holiday as well as the recipes for candy canes, rice nog and gingerbread cookies, to see if they might be safe for your family, or if you can modify them to make them safe.  


There is also a PDF for celebrating Chanukkah:  http://www.kidswithfoodallergies.org/KFA-Celebrates-Chanukah.pdf, which includes two latke recipes (white potato and sweet potato).


They have various pamphlets with ideas for dealing with the different holidays, as well as an article with some tips from Psychologist John F. Taylor, Ph.D., author of the book, "Why Can't I Eat That!  Helping Kids Obey Medical Diets." 
http://www.kidswithfoodallergies.org/resourcespre.php?id=120&title=food_allergy_restrictions_during_the_holidays.  


Just before Thanksgiving, they also provided the following allergy-friendly recipes:


Just-Sugar Lollipops:  http://www.kidswithfoodallergies.org/allergy_free_lollipop_recipe.php


Homemade Candy Canes:  http://www.kidswithfoodallergies.org/candy_cane_recipe.php


Sugar Sculptures:  http://www.kidswithfoodallergies.org/allergy-free-sugar-sculpture-Christmas-tree.php


Sugar Shapes:  http://www.kidswithfoodallergies.org/allergy-free-sugar-shapes.php


Hokey Pokey or Honeycomb:  http://www.kidswithfoodallergies.org/allergy-free-sugar-honeycomb.php
  


You can find lots of wonderful allergy-friendly recipes at: 

Kids With Food Allergies:  (many require membership, which is quite worthwhile, but some are free).

FAAN (Food Allergy and Anaphylaxis Network) also has plenty of recipes on their site

LivingWithout Magazine (lots of allergy-friendly and gluten-free recipes in their magazine and on their site)


Cybele Pascal's website and cookbooks:  http://www.cybelepascal.com/

APFED:  Recipes and suggestions and their "Extreme Cooking for Exceptional Diets" cookbook 


I also have some of my personal cookbook recommendations in the EosMom Store.

There are so many more resources; too many to list, but I think this is a good start and hope it will be helpful.  


As for my own family, thanks to swallowed Flovent, my son has been able to eat holiday meals without restriction for the first time since he was 6 years old.   However, some of the things that you would assume would be a hit were foreign to him, and were not automatically welcomed with an open mouth.  He's getting used to them, though.  


My daughter still has to avoid dairy, and I found a really good french toast recipe, which we made on Thanksgiving morning and will again on Christmas.  The recipe is found on the carton of So Delicious Coconut Nog, or you can also find it here, on the manufacturer's website.  It calls for gluten-free bread (use whatever bread is safe for you) and uses bananas in lieu of eggs.  Since we didn't have to avoid eggs or glutens this Thanksgiving, I just used my own recipe and substituted the coconut nog for milk.  It was absolutely AMAZING!!!  After the holidays, my son will discontinue the Flovent and will re-trial bananas to see if they are safe.  If they aren't, I will have to see if I can find another substitution so that I can use this recipe in the future.   


Whichever holiday you are celebrating, I wish everyone a happy, healthy, and peaceful holiday season and all of the best in the coming year. 

True Life | I'm Allergic To Everything

True Life | I'm Allergic To Everything: Raelyn And Zeke are two young people who suffer uncertainty every time they take a bite of food. Can they get their allergic reactions under control so they might find relief in their everyday lives?

Zeke is from Texas and has Eosinophilic Esophagitis. He and his family have also co-founded a charity called "Angels For Eosinophilic Research Alliance" http://www.angelsforeos.org

True Life - MTV Shows

Eosinophilic Esophagitis: Finally seeing the light at the end of the tunnel

My son is now 13 years old.  He is officially a teenager, although I still can’t understand how that happened so soon!  It feels like he just learned how to speak, read, write, ride a bike, and just got through all of the childhood milestones that we, as parents, eagerly look forward to & document.  Among those milestones is a child being able to eat on his own.  This is one that we have struggled with and he is still working on to some extent.  However, it is not because of a developmental disability.  It is because of a gastrointestinal disability. 

My son has had a feeding tube for the past 6 ½ years and has been consistently trialing foods for over 6 years.  Most have been successful, and he has been fortunate enough to keep the majority of the foods he has trialed.  We have been able to pinpoint most, if not all of the foods that trigger his Eosinophilic Esophagitis.  We still have a handful of foods left to trial, but for the summer, we decided to have him trial a medication (swallowed Flovent) and eat everything that would otherwise make him sick.            

While the long-term goal is to have him control the disease with a safe diet, he also needs to know what options he will have going forward into adulthood.  As an adult, he will likely be going on vacations, out to lunch with friends or co-workers and, dare I say it…(gulp) DATES!  He needs to know if there is a medication that will work and, if so, how well it works, what the side effects might be, and so on.  

Flovent (fluticasone) is one of the medications that are used as off-label treatments for Eosinophilic Esophagitis (EoE).  It is an inhaled steroid medication that is commonly used for asthma, but for the purposes of treating EoE, it is swallowed instead of inhaled.  He takes 2 puffs in his mouth (one-at-a-time), swallows, and then waits 30 minutes before eating or drinking.  He does this once in the morning when he wakes up and once at night before bed.  So far, so good!

He has been taking the medication and eating a normal diet since the end of May.  He was able to enjoy a week at Boy Scout Camp without worrying about getting enteral feedings at the nurse’s cabin or having to wait while I warmed up the safe foods that I brought with us.  He is able to enjoy “Pizza Wednesday” with everyone else at school (he is going a few days a week during the summer).  He was able to eat out during field trips, too.  We have been exposing him to a variety of different types of foods.  He is still getting used to the flavors and textures, but he’s adapting quickly and enjoying the ability to eat all of the things he has been avoiding for the past 6 ½ years.

Not all medications work the same for everyone, and thankfully there are now a few options.  Some people find that Flovent works well, but for others it doesn’t work at all or only works for a short time and then becomes less effective.  Budesonide is another medication that is being used to treat some patients.  It is mixed with Splenda to form a slurry, which is then swallowed.  Both Budesonide and Flovent are steroid medications.  Budesonide is also known as Pulmicort (for asthma) or Rhinocort (for nasal allergies). 

There are clinical studies being done with another medication, an anti-IL5 medication that is delivered via IV infusions.  That has reportedly been used rather successfully in many patients with eosinophilic gastrointestinal disorders.  Thankfully, it doesn’t seem that my son will need that particular medication, but it is good to know that one day it may be an option for patients who do need it.

So far, the major downside of this whole process has been the length of time it has taken to determine the trigger foods, the method of delivering the safe medical food (the formula, which tastes so bad that he couldn’t drink it and needed a feeding tube) and the invasive nature of the procedures needed to confirm whether or not he is reacting to a particular food.  Having an endoscopy with biopsies is currently the only way to be sure whether or not the eosinophils have infiltrated the esophagus and what they are doing in there (whether or not they have degranulated and caused damage, etc).

Of course, there’s also the affect it has had on him socially and emotionally, as he can’t normally eat what his friends are eating and that has limited his ability to socialize during lunch, parties, and so on.  When he had fewer safe food options, he couldn’t handle being near others who were eating.  He also understandably feels a bit self-conscious about having a g-tube in his stomach, although it has been much better than having an NG tube in that it is not easily visible. 

I have always taught my kids that everyone has their individual struggles in life; some more than others, and some are more obvious than others, but everyone has them.  We can allow those struggles to limit or even incapacitate us, or we can choose to overcome them as much as possible and not let them define us.    I hope they do remember that through their lives, because our struggles will vary and change throughout our lifetime.     

My hope for those with eosinophilic esophagitis and other eosinophilic gastrointestinal disorders is that, one day, there will be a safe and effective, yet less-invasive way of diagnosing the disorders and then determining if a reaction is taking place with food elimination and food trials, medications, etc.  While I am obviously hoping for a cure, as is EVERYONE who is dealing with it personally or in a loved one, I am also hoping for cures to other autoimmune disorders like celiac, diabetes, vitiligo, alopecia, Hashimoto's disease (thyroid) and so on.  I would also love to see a cure for asthma.  Maybe one day, enough will be known about all of them to prevent the body from having the inappropriate immune reactions that occur in these disorders.  I would love to see that in my lifetime. 

As for Eosinophilic Esophagitis specifically, I am hoping that what my son has gone through will no longer be necessary in the not-so-distant future.  I hope that there will soon be methods to more easily diagnose, determine the particular allergens responsible for each person, and treat the disease.  I am very thankful that there is the knowledge and understanding to treat it at all, because it has helped him to become very healthy as a result, but he has gone through a whole lot to be healthy.  At least he will have the knowledge to make informed decisions about his own care as an adult.  

Just as when the mother birds kick their babies out of the nest, they hope those babies will fly, I hope and pray that my son will make good decisions as an adult and will be able to remain healthy throughout his life so that he will not just simply able to fly, but SOAR and accomplish whatever he attempts to do.  

Special Education Laws and Resources: IEPs, 504 Plans, Classroom Accommodations for ADHD Children | Information on Attention Deficit Symptoms, Treatment, Diagnosis, Parenting, and More - ADDitude

Special Education Laws and Resources: IEPs, 504 Plans, Classroom Accommodations for ADHD Children | Information on Attention Deficit Symptoms, Treatment, Diagnosis, Parenting, and More - ADDitude

Discover the eight most common problems parents of ADHD and LD children have with school IEPs, 504 plans, and accommodations -- and how to solve them -- with this expert special education advice.

http://www.additudemag.com/adhd/article/8417.html

I know it's the middle of summer, but as the time for school approaches, we should make sure we have the proper accommodations in place. If not, the school should be contacted to set up a child study team meeting. That meeting can take place as soon as school begins, but it is also possible to have them over the summer if needed.

New name for the NJ/PA Eosinophilic Website

NJPAEos.org, which I originally created several years ago to help those in the NJ/PA Eosinophilic Support Group, is now called "NJ/PA Eosinophilic Information" (with the same URL address).  It still has the same information, including news and resources, but I am hoping to expand on that information in the near future. 

Please feel free to visit the site.  Hopefully the information provided will be helpful. 

Eosinophilic esophagitis: Updated consensus recommendations for children and adults

"Eosinophilic Esophagitis: Updated consensus recommendations for children and adults"
(from The Journal of Allergy and Clinical Immunology Volume 128, Issue 1 , Pages 3-20.e6, July 2011)

http://www.jacionline.org/article/S0091-6749%2811%2900373-3/fulltext

New consensus recommendations for the diagnosis and management of EoE! This is an important article to read if you are dealing with Eosinophilic Esophagitis!

Egg Allergy? How to substitute egg in recipes

Egg Allergy? How to substitute egg in recipes

Were you aware that the type of egg substitute you choose depends on whether you are using egg in the recipe as a binder or as a leavening agent? You can find out more at Kids With Food Allergies.
http://www.kidswithfoodallergies.org/resourcespre.php?id=104&title=Basic_recipe_substitutions_for_egg_allergy

Study reveals long-term outcomes for children with eosinophilic esophagitis (EoE)

Important article from Cincinnati Children's Hospital: http://www.cincinnatichildrens.org/health/subscribe/ped-insights/06-11/eosinophilic.htm

June 2011
Study reveals long-term outcomes for children with eosinophilic esophagitis (EoE)

The first study of its kind to examine the long-term natural history of eosinophilic esophagitis (EoE) reveals that children with EoE who also have other allergies are most likely to suffer severe complications from the disease. They also face higher risk of symptoms lasting years into adulthood.

The study, published online this month in the Journal of Allergy and Clinical Immunology, was conducted by researchers at Cincinnati Children’s Hospital Medical Center who studied hundreds of people diagnosed with esophageal eosinophilia before EoE was known to be a separate disease. The study’s lead authors were James Franciosi, MD, MS, MSCE, and Charles DeBrosse, MD.

“This important set of findings suggests that disease severity is greater among patients with allergies,” says Marc Rothenberg MD, PhD, director of the Division of Allergy and Immunology and the Cincinnati Center for Eosinophilic Disorders, and senior author of the study.

“Taken one step further, these data support the need for allergy testing among patients with EoE, as identifying patients susceptible to allergic reactions will not only assist in dietary management, but will help identify those at greatest risk for persistent disease,” Franciosi says.

The study concludes that esophageal eosinophilia is associated with reduced quality of life and persistent symptoms as much as 15 years after presentation. In addition, elevated eosinophil counts in combination with other allergies during childhood increase the risk of swallowing difficulties in adulthood.

What is EoE?

Eosinophilic esophagitis is an inflammation of the esophagus that results in many symptoms, including difficulty swallowing (dysphagia) as well as structural changes and high eosinophil counts (eosinophilia), a type of white blood cell typically involved in allergy and parasitic infections. Sometimes this inflammatory reaction is so severe that managing symptoms requires eliminating solid food and providing nutrition via special liquid formula.

EoE was established as a separate disease in 2007; defined as at least 15 eosinophils in a high-powered field (HPF) of esophageal tissue. Until recently, patients suffering from this disease were often misdiagnosed as having gastroesophageal reflux disease (GERD) or chronic esophagitis.

Researchers now estimate that about one in every 1,000 people in the U.S. suffer from EoE. Cincinnati Children’s encounters about 30 cases each week.

“This emerging disorder is attracting increasing interest among allergists, gastroenterologists, pathologists, and primary care physicians,” Rothernberg says. “However, identifying how best to manage this condition has been hindered by a lack of data regarding long-term outcomes.”

Study method

Researchers at Cincinnati Children’s embarked upon a novel project to examine the natural history of EoE during the transition from childhood into adulthood.

The project involved reviewing 3,817 pediatric esophageal biopsy specimens from 1982-1999. This revealed more than 660 patients with retrospectively identified eosinophilic esophagitis (rEoE) and chronic esophagitis (CE). This group, as well as an age-matched control group, were asked to complete health-related outcome questionnaires.

The study collected 209 completed questionnaires.

Key findings

The surveys show that quality of life was significantly decreased among patients with rEoE and CE compared to the control group. In fact, 73 percent of patients with EoE suffered symptoms into adulthood.

Dysphagia was reported among 49 percent of patients with rEoE and 37 percent of patients with CE compared to 6 percent for the control group. Elevated eosinophil counts during childhood were predictive of this condition in adulthood.

Food impaction was reported among 40 percent of patients with rEoE and 14 percent of patients with CE compared to 3 percent of the control group.

Higher rates of dysphagia occurred if EoE patients also had a food allergy, allergic rhinitis or asthma. Food impaction was more common among patients with reported food allergy.

Next steps

This paper reports the longest natural history study of pediatric EoE to date.

“It is rare to have this type of information on patients for any disease, mainly because the patients went untreated for such a long period of time,” Rothenberg says. “In this case, patients did not know they had the disease.”

This study establishes that rising levels of esophageal eosinophils correlate with worsening disease symptoms. Notably, even though the diagnosis of EoE is currently reserved for patients that have at least 15 eosinophils/HPF, the study reports persistent symptoms associated with levels as low as five eosinophils/HPF.

These findings support more comprehensive allergy testing for patients with EoE to help guide symptom management. In addition, the evidence of long-lasting symptoms for untreated EoE substantiates more aggressive treatment approaches for children.

“Esophageal eosinophilia should not be ignored,” Rothenberg says. “Presence of food allergy with evidence of esophageal eosinophilia should prompt clinicians for more careful clinical attention and treatment and follow up.”

For more information about EoE and its treatment, contact the Cincinnati Center for Eosinophilic Disorders at 513-636-2233 (CCED) or 1-800-344-2462, ext. 6-2233; or email us at cced@cchmc.org.