Eosinophilic Gastrointestinal Disorders (EGIDs) are characterized by above normal
amounts of EOSINOPHILS (
EOS), a type of white blood cell,  infiltrating the digestive track.  
EGIDs are a group of Complex Diseases which can have a debilitating affect on the patients'
daily quality of life.  The Symptoms caused by the disease can interrupt daily life causing
missed school, work, &  social activities.   When Eosinophils infiltrate in excessive numbers,
they can release toxins causing Pain, Inflamation, Errosion & Damage to the affected organ.  

When it comes to EGIDs, in most cases the intake of
FOOD (one, many or all)  plays a major
role in the Eosinophils accumulating in the organ(s).  An Allergy or Sensitivity seems to
TRIGGER the Eosinophils to  Infiltrate.   However in other cases,  FOODS play no or little role
in the process of the disease.  

While still considered a "NEW" Disease, much RESEARCH is needed to learn more about these
rare disorders.  It is not known WHAT CAUSES the ONSET of Eosinophilic Disorders and  
Delays in PROPER Diagnosis are COMMON.  


Where  the  EOS are located (Esophagus, Stomach, Small Bowel or Colon or Blood) and
How many  EOS are found, determines which type of Disorder is diagnosed.


Any one area or more than one area of the GI track can be affected:

EOSINOPHILIC ESOPHAGITIS (EE)      High amounts of eosinophils in the Esophagus  
EOSINOPHILIC GASTROENTERITIS (EGE)     Affects the Stomach and Small Intestine
EOSINOPHILIC COLITIS (EC)       High amounts of eosinophils in the Large Intestine (Colon)
HYPEREOSINOPHILIC SYNDROME (HES)  High amounts of eosinophils in BOTH Blood and Tissue


While at first thought to be a Pediatric condition, new findings reveal that Adults are affected by
Eosinophilic Disorders also.  Probably the most common of these rare  disorders is Eosinophilic
Esophagitis (EE).  


SYMPTOMS OF EOSINOPHILIC GASTROINTESTINAL DISORDERS


  •  Abdominal Pain
  •  Nausea or Vomiting
  •  Reflux ---that does NOT respond to usual treatment including acid suppressing drugs (PPI's)
  •  Chest Pain
  •  Headache
  •  Constipation
  •  Diarrhea
  •  Difficulty Sleeping
  •  Choking
  •  Cramping
  •  Fatigue
  •  Difficulty Swallowing (dysphagia)
  •  Gagging or Retching
  •  Poor Appetite
  •  Joint Pain
  •  Bloating
  •  Eye Shiners (sign of allergy)
  •  Red Cheeks (sign of allergy)
  •  Exzema  
  •  Food Impactions (food gets stuck in throat)
  •  Delayed emptying of the stomach
  •  Anemia
  •  Myalgia (muscle pain)
  •  Unexplained Fevers
  •  Irritability
  •  Decreased Concentration
  •  Blood in stool
  •  Malnutrition
  •  Failure to Thrive (weight loss or delayed growth)
  •  Among others....

Symptoms vary widely --- depending on the area affected.  A patient might experience
ONE,  ALL, or ANY COMBINATION of the above listed symptoms.  No TWO patients are  
IDENTICAL  in their Symptoms, Allergens or Treatment Responses.  This disease is
NOT "Cookie Cutter."  For many patients, there does seem to be an EBB & FLOW to
the disease , with severity of symptoms changing throughout the year, from day to
day, even from hour to hour.  Doctors do believe that the
ENVIRONMENT plays a role
in Eosinophilic Disorders, and some patients are more effected by the environment
than others.

With EGID, the IMMUNE SYSTEM is working overtime.   It mistakes NORMAL
SUBSTANCES as "The ENEMY" and thinks it needs to protect itself by sending
eosinophils to attack the affected organ.

Like other diseases,  Eosinophilic Disorders have a Spectrum.  Patients might
present anywhere on the spectrum at any given time or age.   

It is common for patients with EGID to take a substantially longer amount of time to
recover from COMMON ILLNESSES such as a COLD, FLU or VIRUS.   What takes the
average person 2-3 days to recover from, might take an EGID Patient a few weeks to
shake.  Many times complications arise from a common cold or virus, resulting in
infection, pneumonia, asthma flares, the need for prescription medications or a
hospitilization stay.  Some EGID patients even react to simple indredients in
MEDICATIONS, making the situation even more complicated.

Symptoms of Eosinophilic Disorders can mimic other diseases such as GERD-Reflux,  
Irritable Bowel Syndrome,  Inflammatory Bowel Disease and many others.  
A diagnosis cannot be made on symptoms ALONE.  Internal Biopsies must be taken.


The only way to confirm an EGID diagnosis is by endoscopy and biopsy.  

It is absolutely critical that when the biopsy slides are read, that EOSINOPHILS be looked
for and quantified (counted).
 This reading is done by the pathologist, however a GI doctor
can also review a biopsy slide.  Again, it is the location (organ affected) and the number of EOS
found which are used to give a diagnosis.  

Research seems to link EE to
Food Allergy, Food Sensitivities &  the Environment.   
Once a diagnosis has been made,  a referral to an Allergy doctor familiar with treating
Eosinophilic Disorders is recommended.   There are times that traditional Food Allergy Testing
alone (Skin Prick and RAST-Blood Testing)  do not reveal answers.  This may be due to the
fact that this particular allergy/sensitivity reaction in the GI Tract can be a
delayed reaction.   
For Eosinophilic Disorders, the
combination of Skin Prick and PATCH  Food Allergy testing
results are usually most conclusive in determining the offending foods.  There are times that
ALLERGY TESTS do not reveal any answers, yet there still are offending foods affecting the
patient.  This makes it more difficult to determine which foods are "offenders."


Once the
ALLERGENIC FOODS are determined, an ELIMINATION DIET is implemented.  
Typically the elimination diet will consist for 8-12 weeks and then a repeat endoscopy will be
performed.  If the EOSINOPHIL count has returned to "normal" levels--- the elimination diet
continues.  If the EOS count is still
above normal, the doctor may suggest an ELEMENTAL
FORMULA DIET
.  Elemental Formula is a Hypo -Allergenic Amino Acid Based Formula used to
TREAT EGID.  This treatment is generally not used unless ALL other forms of treatment have
failed.

There are a number of
MEDICATIONS that doctors might prescribe to treat symptoms of an
Eosinophilic Disorder.  Depending on the area affected and the patients' tolerance of
medication, Various STEROIDS & Proton Pump Inhibitors(PPI's Acid Blokers) are commonly
used to treat symptoms of EGID.   Also commonly used, are Steroids,  such as  
Swallowed  
(not inhaled) Flovent  & Prednisone, among others.  


At this current time there is "NO CURE" for EGID.   The treatment plan will vary from  
patient to patient  depending on a number of factors.  The organ(s)  affected by eosinophils,
the severity of the patients' symptoms,  and the patients' medical status will all determine what
treatments the doctor recommends.  While there is not yet a cure for EGID, in many cases
medications and dietary intervention can help with symptoms.  Preventing further damage to
the Digestive Tract is also important as treatment options are being considered.   
We are Very
HOPEFUL that one day there WILL be a CURE.

     Treatment Options:

  •    ELIMINATION DIET
  •    ELEMENTAL DIET
  •    MEDICATIONS




What do I do if I suspect an Eosinophilic Disorder?

Request an appointment with a Pediatric Gastrointerologist and express your concerns to the doctor.  
Bring up Eosinophilc Disorders and  ask the doctor's thoughts regarding performing an ENDOSCOPY?


Once your child has the endoscopy  performed -- review the pathology report.  If you do not have a copy
of the Pathology Report, request a copy from the GI doctor's office or Medical Records at the Hospital.  
What you need to clarify is:  What is the  EOSINOPHIL COUNT ON THE PATHOLOGY REPORT?   If
Eosinophils are not listed or are listed but not counted,  call the doctor and request that the biopsy
slides be RE-READ  and that Eosinophils be looked for, counted and documented on the new
amended report.    If zero EOS were found, then it should be stated on the report.   *****If your child has
had endoscopies performed in the past--you can still request that those slides be reread.  The slides
are archived in medical records. Go through the same process as stated above and ask that the slides
are reread*****


The marker for diagnosing EOSINOPHILIC ESOPHAGITIS is more than 15-20 eosinophils per high
powered field.  Quantifying the eos cannot be stressed more firmly.  


Once a diagnosis has been made, request a referral to a Pediatric Allergist familiar with treating  
Eosinophilic  Disorders.   Food Allergy testing  is performed in hopes of creating a guideline for
treatment.   By using the combination of  RESULTS form PATCH allergy testing and  Skin Prick Allergy
Test, an elimination diet can be suggested.  


After an ELIMINATION diet of  strictly  avoiding all positively identified food allergens,
            usually lasting 8-12 weeks, a repeat endoscopy is performed.   The goal of the      
   
         elimination diet is upon re-endoscopy to find "Normal" levels of eos.  IF the EOS counts                 
   
         HAVE NOT returned to "Normal" levels,  the doctor might recommend ELEMENTAL DIET.
   

     

Importance of "TEAM APPROACH" in Treating Eosinophilic Disorders

Truly treating these disorders involves MULTIPLE MEDICAL SPECIALITIES who are familiar with diagnosing
and treating these allusive disorders.  This is called a team approach.


  • GASTROENTEROLOGY
  • ALLERGY                         
  • NUTRITION                     
  • PSYCHOLOGY               



TAKE HOPE


We know first hand the frustration and difficulty of watching your child be sick month
after month and not know how to help him or her.  Many of us have gone through months
or years before we came to a CORRECT DIAGNOSIS.   Once a diagnosis has been
made, then the real work begins.  We know that this path comes with struggles,
triumphs, setbacks and many questions.   
Our hope is that on this site you find the
knowledge, guidance and support to help you as you search for answers for your
child.  Of course we are not doctors or medical professionals.  
We are a group of Families who are tied together through a common illness.
Feel free to contact us via the email address below.  
You are not alone




CONTACT US:

Eosinophilictucson@yahoo.com






                                                                                                         Copyright 2005
                                                                                                        Updated 2008
                                                                                                            
All RIGHTS RESERVED
                                                                                                              Eosinophilic Tucson Support Group
What Are Eosinophilic Disorders ?


********DISCLAIMER******The information shared on this website and from
members is done so with the sole purpose of Support and Knowledge
sharing. It is not intended to replace your Medical Professional in any way.
We have a lot of shared knowledge due to a personal interest in these
disorders,  but  we are NOT doctors,  and do not intend to present that
impression.  Please consult your doctor before making any changes in the
care of the Eosinophilic OR Other Patient. ************
eosinophil /eo·sin·o·phil/ (e?o-sin´o-fil)