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Eosinophilic gastrointestinal disorders (EGID)
are a series of medical problems characterized by excessive levels of eosinophils in various parts of the gastrointestinal tract
(digestive tract). Specifically, these
problems include:
Eosinophilic Esophagitis (EE): high numbers of eosinophils present in the
esophagus;
Eosinophilic Gastritis (EG): high numbers of eosinophils in the stomach;
Eosinophilic Enteritis: high numbers of eosinophils in the small intestine;
Eosinophilic Colitis: high numbers of eosinophils in the large
intestine the colon.
Eosinophilic
Gastroenteritis: high numbers of
eosinophils accumulate in multiple parts of the gastrointestinal tract.
Inflammation is not always present visually during an endoscopy
or colonoscopy, but it may be seen under the microscope. Abnormally high numbers of eosinophils within
the digestive system alone may or may not be enough to diagnose a person with
an EGID. It may also depend on what the
eosinophils are doing while present.
Doctors consider: inflammation, quantity of eosinophils, activity of
eosinophils, and symptoms.
Unfortunately,
many people go undiagnosed for years, suffering with what can be severe
symptoms. Recent
studies at Cincinnati Children’s Hospital have shown that one type of EGID,
Eosinophilic Esophagitis, is even more common than other well known diseases
that affect the gastrointestinal tract such as Crohn's Disease and Cystic
Fibrosis.
Symptoms can vary greatly, depending on the area
affected, but include:
Nausea
Vomiting
Diarrhea
Failure to thrive (poor growth or weight loss)
Abdominal or chest pain
Reflux that does not respond to usual therapy (i.e.
proton pump inhibitors, a
medicine which stops acid production)
Dysphagia (Difficulty swallowing)
Food impactions (food gets stuck in the throat)
Gastroparesis (Delayed emptying of the stomach)
Anorexia (poor appetite, but not the self-induced kind)
Early satiety
(feeling full sooner than you should)
Bloating
Anemia
Blood in the stool
Malnutrition
Difficulty sleeping
None of
these symptoms are limited to EGID, and many can occasionally occur in healthy kids
or adults, so the diagnosis is not usually considered unless the symptoms have
not resolved. The symptoms of
Eosinophilic disorders can be similar to
inflammatory bowel disease, food allergies, irritable bowel syndrome and
reflux, as well as others.
In addition
to (not in lieu of) the above, some people also experience pain in their lower
limbs (legs, ankles & feet), ear infections, asthma, croup, migraines,
mysterious fevers, and more frequent “colds” when they are reacting to a food. Behavioral changes have also been reported
in some children.
Endoscopy and biopsy is the ONLY way to confirm the
diagnosis of EGID.
It cannot be diagnosed based upon symptoms alone. During an endoscopy, the gastroenterologist
uses an endoscope (a tube with a light and camera at the end) to look at the GI
tract and take multiple small biopsies.
The biopsies are later reviewed by a pathologist. A high number of eosinophils (counted per
high power field under the microscope) suggest the diagnosis of EGID. The
pathologist will also look for the location of the eosinophils (which part of
the GI tract they are from & how deep in the tissue), changes in the layers
of tissue, and degranulation (spilling of the contents of the eosinophils). Eosinophils
can normally be found in small numbers in all areas of the GI tract except the
esophagus. GERD (acid reflux) is associated with low numbers of eosinophils in
the esophagus. With eosinophilic esophagitis, the number of eosinophils seen is
much higher and remains elevated despite treatment with acid reflux medication
(proton pump inhibitors or histamine-2 receptor
blockers).
Once the diagnosis of EGID is confirmed, food allergy testing
is typically recommended to guide treatment. Tests for food allergies include
skin prick testing, patch testing and RAST (Radioallergosorbent
test).
There is currently no cure for EGID, but
the goal of treatment is to alleviate symptoms in the gastrointestinal
tract. It is based upon the location of
the eosinophils, whether only in the esophagus, only in the stomach, only in
the large intestine, or a combination of locations. Treatment may include:
Food
restriction, such as in an elimination diet where foods that have been
positively identified via allergy testing are strictly avoided. Many people find that this option works very
well for them.
Elemental
diet, a special medical food (elemental formula) is consumed either by mouth or
feeding tube.
Medication
Elimination diets: Some doctors are advising to remove only what
a patient has tested positive to via skin prick testing, RAST testing &
patch testing. Others are suggesting
that the patient remove the top 8 food allergens (milk, egg, peanut, tree nut,
soy, wheat, fish, & shellfish). However,
it could be any food or combination of foods.
While allergy tests are used to guide an elimination diet, there can be
false negative and false positive test results.
It only takes one false negative food for the elimination diet to
fail. When an elimination diet does not
do enough to clear the GI tract of eosinophils (as evidenced by scope with
biopsy), sometimes a stricter diet is needed.
Elemental
diet consists of a
medical food (elemental formula), without any proteins, either in its whole or
incomplete form (pre-digested or hydrolyzed).
Elemental formulas are made of amino acids (the building blocks of
proteins), fats, sugars, vitamins and minerals. Amino acids do not cause
allergic reactions but whole or partial proteins can.
Although new flavors are available to make the formulas more palatable, kids
and adults who need elemental formula may have a difficult time drinking enough
of it. To maintain proper nutrition, some require enteral feeding tubes to
allow the formula to go directly into the stomach. In the most severe cases,
nutrition is administered directly into the blood stream (parenteral feeds, or
TPN).
Medication: No medication can cure EGID. They can be used, along with dietary management,
to suppress the symptoms of the disease.
The most common medication is steroids, which can be given topically
(spray that is swallowed), orally, through a feeding tube or through an
intravenous (IV) line. A physician
determines the type of steroid, amount and duration of treatment based on
individual needs. Side effects from
steroids often limit long-term use.
****DISCLAIMER****
This
website has been set up by parents of children with eosinophilic disorders.
We are NOT
doctors. The information shared on this website is not intended to replace
advice from
your licensed healthcare provider. Decisions
regarding medical care should
always be made with your licensed
healthcare provider. Please consult your doctor before
making any
changes in medical care. No one should ever
disregard or delay seeking
medical advice due to the content
of this website.