How are EGIDs diagnosed?
Diagnosis of an EGID requires an endoscopy/colonoscopy and biopsies. Visually, the endoscopy may show furrowing, thickening of esophageal folds, abcesses, white plaque, and other issues. Alternately, it may show nothing. Without a biopsy and a skilled pathologist, the right diagnosis cannot be made.
Aidan's scope was visually clear, but his biopsies showed very high numbers of eosinophils.
A pathologist will review samples taken throughout the digestive tract, looking for tissue injury, swelling, and thickening of tissue.
Once an EGID has been diagnosed, food allergy testing is usually recommended to guide treatment and/or food reintroduction.
Skin prick testing (SPT) to different foods is the most common method of allergy testing, but since EGIDs are caused by a delayed reaction, SPT is of limited use.
Aidan's SPT so far has shown allergies to peanuts, peas, and soy.
Patch testing, which looks for delayed reactions, is frequently used with some success. But it's not at all uncommon for a food that did not show positive on an allergy test to actually be an EGID trigger food.
Aidan's Patch Testing has revealed allergies to milk, egg, wheat, rice, corn, oat, barley, potato, beef, green bean, carrot, peach, and apple.
So Then What? How do you treat this??
There is no cure for EoE. No cure for any of these EGIDs. The goal is to control the flares and alleviate symptoms. Treatments take two approaches - Diet and Medication.
Elimination Diet: Dietary restrictions are guided by food allergy testing. Some doctors recommend that the "top 8 allergens" (milk, egg, peanut, tree nut, soy, wheat, fish, shellfish) be removed from the diet, in addition to the foods that were identified via allergy testing. 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. This may mean just removing some additional foods from your diet, or going directly to an elemental diet.
Aidan's failure to thrive was so scary that alongside his doctors, we chose to bypass the elimination diet altogether.
Food trials involve adding back one food ingredient at a time while observing for a reaction. Most doctors recommend that food trials not be started until symptoms have completely resolved and no eosinophils are seen in the biopsies (a "clean scope"). Methods vary, but patients are often scoped and biopsied after each food trial, which can last 2-3 months. It's a slow process, and patience is really important.
Aidan has trialed (and failed) rice and flavored formula. A trial (and a failure!) is pretty emotionally difficult, and we're in no rush to try again. We will, soon, but not yet.
Elemental diet consists of a prescription medical liquid nutrition without any food proteins whatsoever. Elemental formulas are made of amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals.
Aidan drinks Neocate Jr (with a side of Calamari).
Elemental formulas are available in a variety of flavors, but they don't taste very good and patients often have a hard time drinking enough. For those people, feeding tubes can help avoid malnutrition and failure to thrive.
Aidan was ultimately given a feeding tube for just this reason.
Medications for EGIDs generally involve steroids to control inflammation and suppress the eosinophilic reactions. Steroids are normally used only if dietary changes do not resolve the symptoms. Side effects from steroids often limit long-term use, and without removing the cause of the symptoms via dietary restrictions, the eosinophils will return once the medication is discontinued.
Aidan did try a steroid, but it didn't work out well for him. Your mileage may vary.
Many patients (Including Aidan) are also on high-dose proton pump inhibitors (PPI's) like Prilosec. This helps control the reflux symptoms that can also be the cause of failed scopes.
Next week - Aidan's tests and diagnosis!
Diagnosis of an EGID requires an endoscopy/colonoscopy and biopsies. Visually, the endoscopy may show furrowing, thickening of esophageal folds, abcesses, white plaque, and other issues. Alternately, it may show nothing. Without a biopsy and a skilled pathologist, the right diagnosis cannot be made.
Aidan's scope was visually clear, but his biopsies showed very high numbers of eosinophils.
A pathologist will review samples taken throughout the digestive tract, looking for tissue injury, swelling, and thickening of tissue.
Once an EGID has been diagnosed, food allergy testing is usually recommended to guide treatment and/or food reintroduction.
Skin prick testing (SPT) to different foods is the most common method of allergy testing, but since EGIDs are caused by a delayed reaction, SPT is of limited use.
Aidan's SPT so far has shown allergies to peanuts, peas, and soy.
Patch testing, which looks for delayed reactions, is frequently used with some success. But it's not at all uncommon for a food that did not show positive on an allergy test to actually be an EGID trigger food.
Aidan's Patch Testing has revealed allergies to milk, egg, wheat, rice, corn, oat, barley, potato, beef, green bean, carrot, peach, and apple.
So Then What? How do you treat this??
There is no cure for EoE. No cure for any of these EGIDs. The goal is to control the flares and alleviate symptoms. Treatments take two approaches - Diet and Medication.
Elimination Diet: Dietary restrictions are guided by food allergy testing. Some doctors recommend that the "top 8 allergens" (milk, egg, peanut, tree nut, soy, wheat, fish, shellfish) be removed from the diet, in addition to the foods that were identified via allergy testing. 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. This may mean just removing some additional foods from your diet, or going directly to an elemental diet.
Aidan's failure to thrive was so scary that alongside his doctors, we chose to bypass the elimination diet altogether.
Food trials involve adding back one food ingredient at a time while observing for a reaction. Most doctors recommend that food trials not be started until symptoms have completely resolved and no eosinophils are seen in the biopsies (a "clean scope"). Methods vary, but patients are often scoped and biopsied after each food trial, which can last 2-3 months. It's a slow process, and patience is really important.
Aidan has trialed (and failed) rice and flavored formula. A trial (and a failure!) is pretty emotionally difficult, and we're in no rush to try again. We will, soon, but not yet.
Elemental diet consists of a prescription medical liquid nutrition without any food proteins whatsoever. Elemental formulas are made of amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals.
Aidan drinks Neocate Jr (with a side of Calamari).
Elemental formulas are available in a variety of flavors, but they don't taste very good and patients often have a hard time drinking enough. For those people, feeding tubes can help avoid malnutrition and failure to thrive.
Aidan was ultimately given a feeding tube for just this reason.
Medications for EGIDs generally involve steroids to control inflammation and suppress the eosinophilic reactions. Steroids are normally used only if dietary changes do not resolve the symptoms. Side effects from steroids often limit long-term use, and without removing the cause of the symptoms via dietary restrictions, the eosinophils will return once the medication is discontinued.
Aidan did try a steroid, but it didn't work out well for him. Your mileage may vary.
Many patients (Including Aidan) are also on high-dose proton pump inhibitors (PPI's) like Prilosec. This helps control the reflux symptoms that can also be the cause of failed scopes.
Next week - Aidan's tests and diagnosis!
