For information on EE/EoE (Eosinopilic Esophagitis) or EGID please visit APFED - American Partnership For Eosinophilic Disorders !
Food Protein Induced Enterocolitis Syndrome
Copied with permission from the International Association for Food Protein Enterocolitis (https://www.fpies.org):
Food Protein-Induced Enterocolitis Syndrome (FPIES) is a non-IgE, presumably cell-mediated
gastrointestinal food hypersensitivity that manifests as profuse, repetitive vomiting often with
diarrhea, leading to acute dehydration and lethargy. In a chronic form, FPIES may cause anemia,
hypoalbuminemia and failure to thrive.
The most common triggers are milk and soy, but any food (even those thought to be hypoallergenic e.g. rice, oat) can cause an FPIES reaction. FPIES typically starts within the first year of life.
Unlike most food allergies, the FPIES reactions are delayed and usually begin about 2 hours after ingestion of the causative food. FPIES reactions are characterized by profuse vomiting and diarrhea. In about 20% of cases the child will have such an extreme reaction to a food that they will go into shock and need to be taken quickly to the Emergency Room for immediate treatment. About 75% will have acute episodes on diagnosis. The other 25% children will have more chronic symptoms, which resolve within 1 week after avoiding the food.
FPIES typically presents before 6 months of age in formula-fed infants with repetitive emesis, diarrhea, dehydration, and lethargy 1 to 5 hours after ingesting the offending food. The most common offending food is cow's milk followed by soy, and rice. Other foods have been reported including oats, barley, chicken, turkey, egg white, green pea, peanut, sweet potato, white potato, fruit protein, fish, and mollusks. But, FPIES is possible with any food. Although you will not see an immediate reaction as you would with a “regular” allergy (hives, swelling, anaphylaxis), the delayed reaction of FPIES can be very dangerous, painful, and long lasting.
In 60-90% of affected children, FPIES is outgrown in the first 3 years of life. However, there are individual children that have FPIES continued into adulthood.
Treatment
For acute FPIES, treatment with intravenous hydration is often needed. There is no curative therapy at the current time. Strict avoidance of the offending food is the basic treatment. A hypoallergenic diet can be an amino acid elemental formula or an extensively hydrolysed casein or whey formula.
Diet
Many children have only one trigger food and are able to eat a normal diet otherwise. Others have a few safe foods but some don’t have any. These children rely on a diet of breast milk (where moms may have to eat a special diet) or an elemental medical formula.
Although it is likely that there are safe foods for all FPIES children, the process of finding them is extremely painstaking. Each food must be trialed slowly while parents look for reactions before they are “full blown.” When a reaction does occur, healing can take days to weeks before a new food can be trialed.
The FPIES Family
The FPIES family is overwhelmed with daily challenges of managing their child’s condition. The many trials parents and caregivers face include:
Slowly, methodically trialing foods and trying to recognize the symptoms of a reaction.
Helping their child through the pain, discomfort, and lingering effects of a reaction.
Keeping their child safe from all foods that are unsafe or unknown.
Helping their child cope with being denied the basic human desire to eat food.
Researching their child’s condition.
All these things are added to the normal stressors of family life—work, school, kids, etc.
An FPIES child often looks healthy on the outside. It is what is going on inside and the cost of staying healthy that is debilitating for the FPIES child and family.
Why Research?
Very little is known about FPIES.
Few doctors are able to recognize and diagnose the syndrome.
There is currently no cure or treatment for FPIES.
While seminal studies report that children may outgrow FPIES between ages 2 and 3, many families are finding that this is not the case for their child.
There are a variety of symptoms among FPIES children that are currently not recognized by the medical community as being related to FPIES.
More research is needed.
Copied with permission from the International Association for Food Protein Enterocolitis. For more information, please visit their website at https://www.fpies.org
gastrointestinal food hypersensitivity that manifests as profuse, repetitive vomiting often with
diarrhea, leading to acute dehydration and lethargy. In a chronic form, FPIES may cause anemia,
hypoalbuminemia and failure to thrive.
The most common triggers are milk and soy, but any food (even those thought to be hypoallergenic e.g. rice, oat) can cause an FPIES reaction. FPIES typically starts within the first year of life.
Unlike most food allergies, the FPIES reactions are delayed and usually begin about 2 hours after ingestion of the causative food. FPIES reactions are characterized by profuse vomiting and diarrhea. In about 20% of cases the child will have such an extreme reaction to a food that they will go into shock and need to be taken quickly to the Emergency Room for immediate treatment. About 75% will have acute episodes on diagnosis. The other 25% children will have more chronic symptoms, which resolve within 1 week after avoiding the food.
FPIES typically presents before 6 months of age in formula-fed infants with repetitive emesis, diarrhea, dehydration, and lethargy 1 to 5 hours after ingesting the offending food. The most common offending food is cow's milk followed by soy, and rice. Other foods have been reported including oats, barley, chicken, turkey, egg white, green pea, peanut, sweet potato, white potato, fruit protein, fish, and mollusks. But, FPIES is possible with any food. Although you will not see an immediate reaction as you would with a “regular” allergy (hives, swelling, anaphylaxis), the delayed reaction of FPIES can be very dangerous, painful, and long lasting.
In 60-90% of affected children, FPIES is outgrown in the first 3 years of life. However, there are individual children that have FPIES continued into adulthood.
Treatment
For acute FPIES, treatment with intravenous hydration is often needed. There is no curative therapy at the current time. Strict avoidance of the offending food is the basic treatment. A hypoallergenic diet can be an amino acid elemental formula or an extensively hydrolysed casein or whey formula.
Diet
Many children have only one trigger food and are able to eat a normal diet otherwise. Others have a few safe foods but some don’t have any. These children rely on a diet of breast milk (where moms may have to eat a special diet) or an elemental medical formula.
Although it is likely that there are safe foods for all FPIES children, the process of finding them is extremely painstaking. Each food must be trialed slowly while parents look for reactions before they are “full blown.” When a reaction does occur, healing can take days to weeks before a new food can be trialed.
The FPIES Family
The FPIES family is overwhelmed with daily challenges of managing their child’s condition. The many trials parents and caregivers face include:
Slowly, methodically trialing foods and trying to recognize the symptoms of a reaction.
Helping their child through the pain, discomfort, and lingering effects of a reaction.
Keeping their child safe from all foods that are unsafe or unknown.
Helping their child cope with being denied the basic human desire to eat food.
Researching their child’s condition.
All these things are added to the normal stressors of family life—work, school, kids, etc.
An FPIES child often looks healthy on the outside. It is what is going on inside and the cost of staying healthy that is debilitating for the FPIES child and family.
Why Research?
Very little is known about FPIES.
Few doctors are able to recognize and diagnose the syndrome.
There is currently no cure or treatment for FPIES.
While seminal studies report that children may outgrow FPIES between ages 2 and 3, many families are finding that this is not the case for their child.
There are a variety of symptoms among FPIES children that are currently not recognized by the medical community as being related to FPIES.
More research is needed.
Copied with permission from the International Association for Food Protein Enterocolitis. For more information, please visit their website at https://www.fpies.org