eoSOLUTIONS - American Partnership For Eosinophilic Disorders

APFED
American Partnership For Eosinophilic Disorders
eoSOLUTIONS
Issue 1 APFED eoSOLUTIONS www.apfed.org April 1, 2002
Eosinophilic Presentation
CHMC Presented an Informative Overview of the Research and Learned
Information of Eosinophilic Disorders
On February 14, 2002, a round table was held at Cincinnati Children’s Hospital
Medical Center, located in Cincinnati, Ohio.
The Departments of Allergy and Immunology, and Gastroenterology and Nutrition presented
an informative outline of the research and known facts of the Eosinophilic Disorders to the
APFED (American Partnership for Eosinophilic Disorders) Executive Board and to KIWEE
(Kids Infiltrated With Eosinophilic Enteritis) representatives, via satellite.
The beginning of the meeting was conducted by Dr. Marc Rothenberg, Allergy/Immunology.
He welcomed KIWEE and APFED and then proceeded to share with us an outline of CHMC,
through slides and a verbal tour. He shared with us that Children’s Hospital Research Facility
was the first to discover the Polio vaccine. In the hospital, there are 400 beds for pediatrics, an
extensive research facility and medical libraries. CHMC is ranked number three for research
support. There are 350 people involved in Eosinophil research, with half involved in research
and the other half involved with the research and health. The goals of the research:
-To provide the best care for patients with Eosinophilic disorders, and
-To educate patients, families, and the medical community about the disease.
Some of the research has shown that eosinophils form inside the bone marrow. It is passed
through the blood stream by circulation, in low levels. Some have high levels; which move
from the blood to the tissues where they park and live. The eosinophils leave the blood and go

to the intestines. The research is currently sorting out different pathways and why they do this.
Many developments have been made.
Dr. Philip Putnam, Gastroenterology, treats Eosinophilic Disorders in children while he also
works on the clinical issues. He bases his treatments on evaluations of the patient’s medical
history, including prior evaluations and biopsies. Through diagnostic testing, he begins an
elimination diet (taking out food proteins), on elemental diet, steroids (topical or systemic), and
immunomodulators. Dr. Putnam bases his follow up plans, on the patient’s needs.
Dr. Amal Assa’ad, Allergy/Immunology, explained that a reaction always happens the second
time after exposure, the first time being the introduction. Reactions can be fast or slow;
localized or widespread. Dr. Assa’ad is currently tracking the allergic form of Eosinophilic
Disorders. She is finding that the majority of patients with Eosinophilic Disorder are testing
positive to the skin RAST test, with 49% having a positive reaction to food and 55% having a
positive reaction to environmental allergens. The challenge is to find the delayed type of
Eosinophil.
Dr. Margaret Collins, Pathology, displayed slides taken of a normal biopsy and an abnormal
biopsy. The difference between the two slides was astounding. It is very difficult to believe that
this disease is so commonly mis- diagnosed. Dr. Collins suggests that parents who have had
their children’s biopsies screened and returned as “normal”, have them reviewed by another
pathologist for a second opinion, even if this means sending the slides to Cincinnati Children’s
Hospital Medical Center. Dr. Collins would also like to see that while patients are having
scopes to also have them biopsied and scanned for eosinophils. She would like to see that this
become a common practice in all hospitals.
Dr. Jesus Guarjardo, Allergy/Immunology Fellow, voiced many concerns about the lack of
knowledge of Eosinophilic Disorders. A doctor from Mexico, he had never heard of the disease
until beginning his work at Cincinnati Children’s Hospital. He stated that one of the most
important steps to be taken is compiling data. He has (screened) the 107 patients who had
responded to the survey (at the time of our meeting), into groups of age, location, symptoms,
and diagnoses. The hospital now treats over 200 patients with Eosinophilic Disorders. Dr.
Guarjardo is not restricting his research to pediatrics, but also to the adult population. It is very
important that he has an accurate poll in order to find similarities between patients of all ages.
You can find the Cincinnati Children’s Hospital Survey on the APFED Home Page. I would
encourage all to visit the site and enter the needed information. If your diagnosis has changed,
you may also update your information through the survey. Dr. Guarjardo is very interested in
learning what medications control inflammations or what other indicators may be found to
cause the inflammation of Eosinophils.
Ms. Jennifer Bierber, Development, spoke briefly about fund raising through the hospital.
Research will need a constant income and the Development Team is willing to work with
APFED and KIWEE to raise money for potential gifts. Some of the gifts or programs listed were
as follows: lab freezer, clinical data based computer, lab centrifuge (which will process tissue),
hiring a research assistant, Anti IL5 Trial, hosting an international meeting, establishing a
comprehensive research program, and a perpetual endowment. These goals have been
established and with all of our fund raising efforts combined, we should be able to gift the
research department their much needed equipment in order to help find a cure for Eosinophilic
Disorders.
At this year’s APFED Conference, all of the doctors who attended the presentation have agreed
to share the information which I have just summarized. It was two hours of information that I

could not possibly even begin to write down or put into words. I had learned more in two
hours than I had learned in two years. The information was very well presented with easy
terms and very defined outlines. The doctors are also very willing to answer questions and
hear opinions or suggestions. The dates for the APFED conference are scheduled for the
weekend of August 16,17, and 18, 2002. The conference will be held in Cincinnati, Ohio, at The
Radisson Hotel (Sharonville). Further information of location and conference agenda will be
forthcoming.
Science Fair Project
The following is a science fair report and project completed by Justin Atkins of Massachusetts.
He received an “A” on the project and it helped him gain a better understanding of the disease.
Justin, who was 12 years old and in the sixth grade at the time, told me that it was fairly easy to
do the project. It helped him to learn about the other kids who are also having problems and it
helped Justin to know that he was not alone. While his project was displayed, many classmates
asked questions which helped make their understanding of Justin’s disease clearer. Dr. Glen
Furuta, Gastroenterology, shared with Justin photos of a normal and abnormal biopsy with
eosinophils. Justin had these pictures blown up and it showed the differences very clearly.
Out of 370 science fair projects, Justin’s display received the Science Special Award for second
place.
“EOSINOPHILIC ESOPHAGITIS”
by Justin Atkins
February 2001

In this study, I hypothesize that the safest, 100% effective treatment for Eosinophilic
Esophagitis is the use of an elemental formula diet or TPN (total parenteral nutrition, feed
through a tube into an artery) with the exclusion of ingesting any foods. There were 23
responses to the survey sent out to the eosinophiligastro e-mail loop. This is an e-mail support
network for parents of those suffering with eosinophilic disease. Of the 23, eleven were
excluded from my study, due to the presence of mixed eosinophil disease, that is eosinophil
esophagitis together with eosinophil disease in the lower digestive tract. Of the remaining 12
participants, 7 made up the study group and 5 were included in the control group. The study
includes those who are being treated with elemental formula Neocate, or Elecare. Also in the
study were those using TPN. The control group consists of those who are excluding the foods
they tested allergic to, either RAST blood test, and/ or skin prick testing. If not treated
properly, eosinophil esophagitis can lead to the need for TPN treatment, which has serious side
effects. If left untreated, eosinophilic esophagitis will lead to narrowing and esophageal
strictures.
Eosinophilic Esophagitis is a rare disease. It was thought that there are only 10 cases in the
world. But studies show that there are more than 10. It is unknown how many there are.
Eosinophilic Esophagitis, also known as EE, is inflammation of the esophagus. The esophagus
is the tube that brings food from your mouth to your stomach. The inflammation causes
various symptoms. The symptoms present in this study are heartburn, chest pain, difficulty
swallowing, food stuck in esophagus, failure to thrive, vomiting, vomiting blood, difficulty
sleeping, nausea, sore throat, and coughing. All of the people in this study have two or
sometimes more symptoms.
Eosinophilic Esophagitis is diagnosed by the presence of eosinophils in the esophageal tissue.
Eosinophils are blood cells that are involved in an allergic response to something. The allergy
causes more eosinophils to be produced in the blood and tissue of the esophagus. This is
discovered by biopsies of the esophagus. More than 15-20 eosinophils need to be present by
high powered field microscope (HPF) for diagnosis of EE. This is after a treatment of reflux
medications over 6 weeks time.
Eosinophil Esophagitis isn’t the only disease with eosinophils. GERD, or reflux, also has
eosinophils in the esophagus. With GERD, however, there are much less eosinophils. GERD
and EE share many of the same presenting symptoms, such as heartburn, nausea, and chest
pain. Most patients with eosinophil esophagitis have been previously diagnosed and treated
for GERD. Treatment for GERD is not effective with eosinophilic disease. This is what often
leads to further testing and ultimate diagnosis of EE.
TREATMENT
In those using various GERD medications as treatment prior to eosinophil esophagitis
diagnoses, none had a positive outcome. In those using Flovent treatment, medication was
swallowed as opposed to inhaling the spray as is done for treatment of asthma. The patients
who saw consistent, remarkable, improvement with the Flovent treatment were those for
whom the restricted diet treatment has been successful. Prednisone, an oral steroid worked for
all 6 patients who used it. Prednisone, however is associated with extensive, severe, side
effects, such as compromised immune system, development of cataracts, adrenal gland failure,
heart failure, loss of muscle mass, and bone fractures. Therefore although it is effective,
Prednisone is not a viable long term treatment for EE. Prednisone is most effective when used
to get the eosinophils under control and the patient started on either formula, TPN, or
restricted diet, for long term treatment.
DISCUSSION

Eosinophilic Esophagitis or EE, is diagnosed by a high number of eosinophils in the esophagus.
Most of the people with EE are first diagnosed with GERD. Everyone in this study started with
a restricted diet. The study group then progressed to the need for elemental formula, Neocate
or Elecare. Two in the study group then required TPN. The formula was delivered by G tube to
all but one of the study participants. One person drinks the Neocate formula. Those in the
study group have had full resolution of symptoms except the two requiring TPN.
The control group did not progress to formula diet. They have varying degrees of food
restriction. All in the control group except one are restricted from milk. Two can’t digest soy,
and three have several food restrictions. Only two in the control group have resolution of most
eosinophils with the restricted diet. The biopsies in the study group taken 6 or more weeks
after beginning elemental formula showed complete resolution of eosinophils in all but the two
requiring TPN. The control group still had some eosinophils even in the two with full
resolution of symptoms. Since there were only few eosinophils present on follow up biopsies, it
is believed they are the result of reflux. In conclusion the elemental formula diet is shown to be
the best treatment for eosinophilic esophagitis.
TESTS
The various tests performed in this study are biopsies of the esophagus, PH probe, upper GI,
allergy skin test, immunoglobulin blood test, gastric emptying, and milk scan. Biopsies are
when the doctor puts an endoscope down your esophagus. That takes little samples of your
esophagus tissue. The endoscope also has a camera on it so the doctor can see where he’s
going. But of course you’re asleep when they do this so you don’t feel a thing. Next is the PH
probe. It stays in you for 24 hours. It gets inserted in the nose and goes down the esophagus to
the LES, the Lower Esophageal Sphincter. This is where the esophagus ends and the stomach
begins. It tests to see if the person has reflux. The upper GI is a barium swallow. A radioactive
drink is swallowed and x rays are taken to see if there is narrowing in the esophagus. Allergy
skin testing is where they take a lot of needles with certain food on it and put it in your skin.
The way you tell if your allergic is the spot with the food you’re allergic to gets itchy and red.
The IG test is another way to test food allergies. Gastric emptying is were you eat radioactive
egg and X-rays are taken of your digestion for an hour and a half. A milk scan is similar to a
gastric emptying. Those are the tests in this study. There are various other tests available. The
biopsies are the most effective way to tell if someone has eosinophilic esophagitis. The
esophagus may look OK, but there could still be eosinophils present. The number of
eosinophils in the biopsy specimen is most important, In order for a diagnosis of eosinophilic
esophagitis to be made, there must be more than 20 eosinophils present on the microscope
slide.
(Continued from Page 4)
WOW! When I questioned Justin about how he feels now about his disease, he answered that
he has a better understanding of his disease, but that he still feels sad that he has it. I am proud
of you, Justin. It could not have been easy to take this project on when it deals so close to your
heart.

Helpful Hints– Egg Substitutes
Many of us are on restricted diets due to our allergic or intolerant responses to various
foods and their proteins. Egg is such a common allergen that most have had to remove
egg from their diet. Phyllis Zuckerman-Frieze has contributed a list of different egg
substitutes.
Egg Substitutes-
-1 tsp. Baking powder, 1 T liquid, 1 T vinegar
-1 tsp yeast dissolved in 1/4 cup warm water
-1 T apricot puree
-1.5 T water, 1.5 T oil, 1 tsp baking powder
-1 packet plain gelatin, 2 T warm water, (Do not mix until ready to use)
There is also a product from Ener-G foods called Egg Replacer. Their web site
is,www.ener-g.com.
SURPRISE CHOCOLATE CAKE
2/3 cup dried lentils 2 squares baking
2 cups boiling water chocolate
1 ½ cups sugar 2 cups GF flour
1 cup vegetable oil mix
4 large eggs 1 ½ tsp. Baking
1 teaspoon vanilla soda
2 teaspoons baking powder
½ teaspoon salt
Rinse and drain lentils and combine in saucepan with the boiling water. Bring to a
boil, cover, and let simmer 40 minutes. Drain, reserving liquid. Puree the lentils and
1/4 cup of reserved liquid in blender or food processor. You will need 1 3/4 cups of
puree for the recipe.
In bowl of your mixer, combine sugar, oil, and eggs. Beat well. Add vanilla and 1 3/4
cups lentil puree to the creamed mixture. Mix well. Melt the chocolate in saucepan or
microwave and add.
Sift flour, baking soda, baking powder, and salt together, add to the chocolate mixture,
and blend thoroughly. Pour batter into greased and rice-floured 9" x 12" pan. Bake in
preheated 350* oven for 30 to 35 minutes, or until center springs back when lightly
touched. When cool, frost with your favorite frosting.
GF FLOUR MIXTURE (in place of wheat)
2 parts white rice flour
2/3 part potato starch flour
1/3 part tapioca flour

A Letter From Beth Mays, President and Co-
Founder of APFED
I have to say I am so incredibly excited to see this first newsletter coming out. It is
one of the first things we set out to do for our membership. Seeing it materialize is a
dream come true. I must start out by thanking everyone who came on board to APFED
during its’ current pending period. There has been a lot of work, time and effort put
into this charity. None of it would have been possible without recognizing several
(continued from page 5) people who were there all along cheering, helping, submitting and just
being sounding boards.
Briefly, to name only a few! Joy Scheibner has been an invaluable source of information and
contribution. She authored theWhat Is EE piece on our web site. It has been complimented by
physicians, patients and lay people from various places around the world. I am proud to have
her as our Research Director. Trish Bradley-Godfrey has very quietly been plucking away at
fund raising and grant finding. She is single-handedly responsible for contacting the Marketing
Director at SHS (Neocate) regarding further funding, the American Academy of Asthma,
Allergy and Immunology (AAAAI), the Department of Health and Human Services, The
Robert Wood Johnson Foundation and numerous other government agencies and charities
with like missions. All this from a woman who felt she would be unable to commit to help.
Beth Rosenberg, an adult EG patient, has selflessly volunteered her time to write all of our
press releases. Our first story was picked up in Maine, and an exclusive interview was
conducted with our Vice-President, Jacque Fanning (See article on the APFED web site under
UPDATES and NEWS). Susan Klosinri and Rick Yanchuleff are both working diligently in the
Public Relations Department. Rick is our Director of Public Relations. He and Susan have
known each other for approximately seven years. They are utilizing their working relationship
for the betterment of us all.
As I mentioned before, we are working very hard at establishing strong contacts. APFED is
hoping to develop a strong relationship with AAAAI. We have been in contact with Dean
Metcalfe, the President. We are eagerly anticipating their response. The AAAAI is a strong
resource for information and grant writing. The conference they held this year in New York
City featured several speakers on eosinophilic diseases, including Dr. Marc Rothenberg, a
leading researcher in our field and member of our Medical Advisory Board. APFED hopes to
attend their conference next year.
To update everyone on the status of fund raising efforts currently underway, several members
have elected to participate in a Tupperware sale. Sales are being conducted with hard copy
brochures and via a web site provided by Cheryl Hilderbrand of Nebraska. The web address to
buy products that benefit APFED iswww.my.tupperware.com/cherylh. Our profit from the
shown Tupperware products will be 50%! That can add up quick. All other products will profit
15%. Denise Dockweiler has been instrumental in getting this fundraiser together for us.

APFED thanks them both for their support and hard work on our behalf. The fundraiser will be
ongoing throughout the month of April. Be sure to visit the web site and make an order.
Another fund raising project in the works is a Benefit Concert in Houston. Several musicians
and bands have committed to donate their services for this cause. There will also be an all
female improvisational comedy troupe performing. In conjunction with the entertainment,
food is being provided. There will also be a silent auction throughout the day. Some of the
items promised for the auction will be a microdermabrasion, a full year’s worth of contact
lenses, a beautiful custom piece of jewelry from Iloff Jewelry, theater tickets, sporting tickets,
autographed items and much more. Lori Freese of Houston has been volunteering her time and
services to this effort. The benefit will be held Saturday, June 22, 2002, in Houston, Texas. If
anyone lives or will be in the area, or just wants to attend, please contact me.
There are quite a few different ideas bouncing around for more fund raising. I am taking a
grant writing course. Grants are going to be an endless source of hope and funding for us. We
intend to apply to any and all sources of funding that will further research and education for
Eosinophilic Disorders. We met with Tim McDowell and Jennifer Bieber of the Cincinnati
Children’s Hospital Development Department in February. We are working on ways to help
the researchers in Cincinnati gain funding. We hope (Continued From Page 6) to continue this
effort with other research facilities nationwide. Research is the key to finding successful
treatments and eventually a cure.
If you are a member of APFED and have not joined our support list, please
visitapfed_eos@yahoogroups.com. This is a place for all members to sound off, share ideas,
expand perspectives on those same ideas and just be together. One does not have to participate
in any fundraiser; these events and ideas are on a volunteer basis only. Members should never
feel pressured to participate in any event or fundraiser.
Once agin, I am thrilled to be a working part of this organization. APFED has given me a real
direction to focus my frustrations with wanting to help. We hope to be a fully operational
501(c)3 charity by our next newsletter. Anyone who is interested in volunteering should contact
Sherri Herrick, Jacque Fanning, or myself. We love volunteers. Again and again- Thank You.
Beth Mays, APFED President and
Co-Founder
Thank you to all who contributed to this first issue of APFED eoSOLUTIONS. Any person who
would like to contribute an article, an event, or a “proud” moment, please forward to
tjmnr@apfed.org or Jacque Fanning, 11 Baldpate Mountain Dr., Waterford, Maine 04088.

EDITOR’S NOTE
As many of you know, I grew up on a little island, seven miles off of the coast of
Maine, in the Bay of Fundy. The ocean was my front yard and my backyard. I grew up
hearing its ever-changing moods, often weathering storms along with the breeze and
sunshine. The feeling that the waves and endless skyline are one of change and
freedom. Nothing ever stays the same.
I often feel the tugs of the ocean when I relate it to my son’s Eosinophilic Disorder. His
moods are often changing and hard to predict. I often feel weightless and helpless
against the flow and tide of his disease. But, at the same time, I see his beauty and his
goodness of heart. That will always be constant. Much like the way we respect and
encompass the beauty of the ocean.
I would like to share with you some words from Rachel Carson, The Edge of the Sea.
The edge of the sea is a strange and beautiful place. All through the long history of Earth it has
been an area of unrest where waves have broken heavily against the land. For no two successive
days is the shore line precisely the same. Not only do the tides advance and retreat in their
eternal rhythms, but the level of the sea itself is never at rest. Today a little more land may
belong to the sea, tomorrow a little less. Always the edge of the sea remains an elusive and
indefinable boundary.