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
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:
What do I do if I suspect an Eosinophilic Disorder?
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.
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 |
********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. ************ |