Today's Dietitian: FPIES

I am honored to have been able to provide an interview for this national magazine, bringing further recognition and awareness to this allergy and the vital role a nutrition professional plays on the medical team of a child living with FPIES.  

Food Protein–Induced Enterocolitis Syndrome — The Hidden Scourge of GI Food Allergies By Judith C. Thalheimer, RD, LDN  (Today’s Dietitian Vol. 15 No. 11 P. 12).  

Be sure to check it out! 

What is FPIES? FPIES At A Glance

For more information, go to www.fpiesfoundation.org 

Gardening for Your Health

Ok, so what does a garden have to do with FPIES?  Well, when you begin to see everything with "FPIES eyes" (as a fellow FPIES mom recently coined), you can help but see some connections, along various levels to many things pertaining to health, food, farming, agriculture, nutrition, medicine, etc.

Follow along with me, to learn a little about what I have been learning about....

I recently attended a simple community education class taught by a PhD Chemist whose own health challenges led him to the connections of soil and our health. He teaches the class to help raise awareness and educate people in the communities of the biology of the soil and what we can do to fix it by helping us understand soil fertility and plant health.  Because, in fixing the soil, we can fix our food and fixing our food, we can improve our health.  Sounds simple?  Well, it's all biology (and a little chemistry)!

I support his efforts to raise awareness to sustainable farming and returning nutrition to our food supply. I attended for this purpose, because of my interest in "buy local, eat local, know your farm, know your farmer, and produce what you can".  We have done a garden for the past many years, but I want to expand on it but also to assure what I grow is grown healthy and avoids the use of chemicals while still getting a good sized crop that I can freeze/preserve.  While I listened, I couldn't help but think of FPIES and how many families (myself included) and some research has tied it to gut microbes, environmental factors, some families speculate on genetic connections in this context, so I wanted to share my notes from this class.
Disclaimer: as with all articles I 'review/summarize' on this blog, these are simply my notes; I am including some information from the slides to help my notes make sense; however, I apologize ahead of time for my sketchy/incomplete thoughts in my notes- I was writing as fast as I could while listening and processing! 

Gardening for your Health

Douglas Piltingsrude PhD

Human Health (excerpts from some of the slides)
The presentation was started with the summary of “the problem” – how the lack of essential minerals in the human body means decreased functions and faster aging which is a product of a lack of essential minerals in the plant results in incomplete carbohydrates and proteins resulting in diseases and insects which is a product of lack of essential minerals and mineral balance in the soil results in low plant uptake thus poor plant and human health.

He went on to outline, as an example, the connections of human health to Magnesium and plant health to Mg and then soil and Mg.

My notes: (from discussion of these introductory slides):

• Enzymes are the magic of life, minerals are needed for enzymes; however this doesn't mean we should use supplements to increase our mineral intakes because the best absorption is from FOOD, not from supplements. (this made my dietetics side smile, as this is what we are 'trained'- food is medicine). Other reasons are because supplements have additives and are missing co-factors that the plants have for your body to utilize that mineral optimally.  Also, Supplements are a band-aid – although band-aids are important, they are not the solution.
• Minerals in plants are 98% bio-available, where as supplements run 10-20% bioavailability.
• Plant health- need nutrient to interact with enzymes to make other processes, if decreased nutrient = less nutrients are made by the plant. 
• 64 minerals in every cell in your body
• Lack of balance of minerals in soil

Human Health Loss (excerpts from some of the slides)

• Poor Health results from Stress, such as: Lack of Nutrition,  Emotional Strain, Toxicity from food and environment, physical damage. 
• Loss of human health- doesn't happen overnight.  Some stages of decreasing health are: reduced elimination of toxic substances, signs of toxicity (skin rash, bad breath, etc), inflammation to trap the toxins, chronic disease (ulcers, IBS, chronic fatigue, etc), and finally, organ failure.
• A slide covered a page from “Minerals for the GeneticCode” by Charles Walters for examples of how a deficiency in minerals contributes to disease or ill conditions. The presenter said that there is a website for the book, which I can not locate).  He also notes that this book is not an easy read, but can be used as a reference material. 

My notes: (from discussion of slides)

• Loss of health happens in stages, progressing through the stages as the stress to your body continues to build:  

            Reduced elimination (of toxins)

Signs of toxicity

Inflammation (in body) to trap toxins

Chronic Disease

Organ Failure

• When you do health by nutrition, it takes longer but you don’t have side effects of drugs.  Drugs= symptoms, symptoms are from toxins in the body.
• An example given is Dementia.  Dementia is a Yytrium deficiency with an aluminum toxicity.  Silicon is important because silicon binds to aluminum.
• All processed foods have reductions in nutrients.

Plant Health Loss (excerpts from some of the slides)

• Plants that are unhealthy attract insect and disease
• Like Humans, plants that lack nutrients get sick
• Plant genetics are a secondary factor to the basic problem
• Photosynthesis explains the issues (graph of photosynthesis chemical breakdown of plant structures)
• More complex molecules are not insect food – the insects antenna aren’t built to detect frequency put out by more complex molecules. The insects don’t have the digestive enzymes that can digest these more complex molecules.

My notes: (from discussion of slides)

• Unhealthy plants attract insects- insects take up the frequency of a foods signal.  Insects are attracted to the unhealthy plant, healthy plants ferment in their system and they die.
• Plants with a particular make up has a particular frequency and insects read frequency of sugar, polysaccharides, starch, amino acids, and dipeptides (simple carbohydrates and simple proteins).  The more complex the molecule structure (cellulose, lignins, polypeptides), the signal is not right and bugs are not attracted to it.
• The insects digestive enzymes can’t break up complex molecules and ferments in their system and the insect dies.  There may be a few insects on your crop but if it is a healthy crop, insects will not stay because they will be dying.  Healthy soil = few bugs that won’t live.
• **Don’t spray for bugs- fix the soil!!
• Round up – complexes all the +2 minerals (such as Copper, Magnesium, Zinc, Nickel, etc) and now the plant doesn't have the mineral to make enzymes to make the plants immune system.  Plant gets diseased. Effects happen to humans because of the diseased plant.
• Part of the plants immune system = minerals (something we tend to want to buy supplements for) – it starts in a healthy soil.

The next section goes into “the solution” (first part of the class was discussing the problem, as a Scientist, he wanted to find how he could contribute to the solution (for his own health), in so doing he saw a great need to educate people so that people will put the pressure on the market. 

Soil Biology (excerpts from some of the slides)

• First showed a visual of the live organisms in the soil, such as: bacteria’s, actinomycetes, fungi, algae, protozoa, nematodes, earthworms, and arthropods (in order of pounds per acre).
• What microbes do for us: decompose soil contaminates, suppress disease producing organisms, perform nutrient recycling by decomposing organic plant and animal material, form large complex carbon structures that open the soil to air and water, transform minerals and nutrients into plant usable forms.
• Biological focused agriculture: Definition: enhancing the natural soil life cycles to grow more soil and crops.  Components for growing soil and plants: Air, water, sunshine, plants and microbes, minerals. 
• Conventional Agriculture:  -cide farming products (Herbicide, pesticide, fungicide, biocide, algaecide, insecticide).

My notes  (from discussion of slides)

• Top 6” of soil is where 3.5tons of microbes live (per acre).  
• Plant can take up nitrogen directly but everything else requires microbes.
• Worms are a microbe factory
• Microbes are the bridge from mineral to plant- transform minerals and nutrients into usable form for the plant. 
• Fungi feed on bacteria (can’t exist without it)
• -cide= kill (conventional agriculture)
• Gardening, we depend on biology, with farming we manipulate biology and put on band-aids that are toxic to the soil.

Soil Composition (excerpts from some of the slides)

• Optimum soil make up: 45% Minerals, 25% Air, 25% Water, and 5% Organic matter
• 45% Soil Minerals: Calcium, Magnesium, potassium, sodium, phosphorus, nitrogen, sulfur, boron, iron, manganese, copper, zinc, silica
• 5% organic matter: plant residue is not part of the 5%, undecomposed roots and tops of plants and animal remains (Humus).

My notes: (from discussion of slides)

• No oxygen = anaerobic microbes (rotton/sour). Healthy microbe life needs aerobic microbes. Microbes need food to live (carb)
• 5% organic matter is what you have after the microbes break down materials= humus.

Soil Potential (excerpts from some of the slides)

• Factors that set the limit for soil performance: weather, %organic matter/carbon, calcium to magnesium ratio, TEC or CEC. 

My notes:  (from discussion of slides)

• %organic matter/carbon = how much carbon in soil from breakdown 
• Calcium to Mg ratio= loose vs. hard soil
• TEC or CEC = how many clay particles, which translates to how many 'sites' to 'set' minerals on. 
• Annual soil potential- primary nutrients determining the % of the performance reached are: Sodium, Potassium, Nitrogen, Phosphorus. Secondary nutrients or trace minerals are: Boron, Iron, Mn, Copper, Zinc. 

Balancing Soil Minerals (excerpts from some of the slides)

• A visual slide about how minerals are stored on clay particles until used by the plant.  They are insoluble yet plant available. (a critical process).
• Slides included illustrations showing the importance of the balance of plant uptake minerals.
• An illustration of some minerals that "butt heads"(compete for space)
• Imbalanced Soil = Plant problems.  Examples:  Excessive magnesium in the soil causes potassium, phosphorus, calcium and nitrogen deficiency in plants.  Potassium deficiency in the soil causes manganese excesses and zinc deficiency.   Excess sodium, potassium and magnesium in the soil causes calcium deficiency. Boron deficiency in the soil causes calcium deficiency in the plants.
• Included a detailed discussion of soil testing- showing example illustrations, how different types of soil differ and where problems can arise (from the imbalances).
• The real soil test issue is field performance.

My notes: (from discussion of slides)

• "You are only as strong as your weakest link"- If short one nutrient (or have too much of a nutrient), it affects the plants ability. 
• A lot of agronomy is done by trying to get a bigger crop, but not increasing the potential of the crop = problem. 
• Improve quality and yield of soil = raise the potential (change the soil)
• Mineral imbalance- plant has genetics that decides what it needs, has to have a balance in the soil.

Soil test and use Connection  (excerpts from some of the slides)

• Albrecht Soil Test (recommends this test).  Other tests do not show that nutrients are not ranked numerically but by “low-medium-high” values and without any ‘manual’ to know what to DO about the readings.   Instructions are VITAL (no matter the cost).  Albrecht has 80 plus years of research by William Albrecht and then Neal Kinsey.  It is the longest estabilished soil test by the USDA, developed from 200 best crops across 40 countries plus University of MO research, data over 60yrs, in 60 countries on 200 crops. It is a teachable method, affordable, and he recommends it.
• Illustration was for 2 different tractors- both good tractors, both do the same thing, but have different owners manuals, you can’t use the owner manual for the opposite tractor.

My notes: (from discussion of slides)

• All soil tests are different, none are wrong.   The problem comes with the CONNECTION between tests and field performance.  You have to have the information that tells you what to do: soil test does this, do that to get yield.  BUT not all soil tests are the same. 
• Used an analogy of the similarities of you in the grocery store and the plant in the soil- people go to the grocery store, all different genetics, we shop and get different groceries even though we have the same choices/the same store. Plant in the soil, has its own genetics; but like in the grocery store, there needs to be a balance as the plant can choose what it needs based on genetics.
• Biology of the soil adjusts itself to the conditions.   Fix the soil and microbes will come.
• Example given: calcium levels increased causes copper levels to increase, which causes fungi to vanish.

**Soil test- if you don’t know where you are starting, how do you know where you want to go?**

• Two soil test types (different types) – not the same for each lab. Chemistry wise, none are wrong but the instructions for using them are different (cant’ interchange between soil test types, must have instruction manual).
• What is ‘broken’ is the soil tests, without enough connection to the performance (so not valuable).
• Recommends: Albrecht Soil Test, if you can’t do the test (costs ~$50-100) but want to do something, start by putting 500# of composted manure per 1000 square feet  of your garden (in following years, only put 100#- too much manure can cause nitrogen excess)- it won’t fully balance the soil but it is better than doing nothing.

Decompose Contaminates   (excerpts from some of the slides)

• Herbicides, pesticides, fungicides, oil, salts, GMO plant residues and antibiotics can be broken down into basic building blocks for building new molecules.  Bacteria, actinomycetes and fungi are the microbes that perform this task. 
• Establish different soil life: open the soil up by balancing the minerals, inoculate the soil with microbes and enzymes, keep carbon:nitrogen rations balanced and increase plant and animal matter additions to the soil to increase organic matter, raise % organic matter to >3% for maintaining microbe life. 
• "Build a hose and microbes will come"

My notes: (from discussion of slides)

• Eventually microbes can tear them apart and make useful nutrients 
• Microbes feed themselves first, if a lot of residue, microbes use up nutrients to break down the residue, then the plant will get nutrients. 

Monitor Plant Health (excerpts from some of the slides)

• Measure plant mineral balance by plant tissue tests, take Brix readings for nutrient content of plant sap or produce juice, test plant sap pH, and do visual tests. (slides for illustrations of Brix readings). Gave examples of visual tests, such as: Purple colorations= phosphorus deficiency, cupped leaves on tomatoes = calcium deficiency, tapped ends = boron deficiency. 
• Monitoring with Plant Sap pH: plants are healthiest and produce the best crops when their sap pH is 6.4 (note: want soil at this pH as well).  Sap pH is set in the plant by the balance of acidic vs. basic minerals the plant takes in. 

My notes: (from discussion of slides)

• Need mineral balance to solve the problem. 

Summary/take home points:  

• If it is not in the soil, its not in the plant, then we suffer because we don't have it. 
• All types of Agriculture are biological, the difference is a matter of degree
• Conventional Agriculture suppresses biological activity
• Enhanced biological agriculture balances soil for minerals and biology, breaks down contaminates and monitors plant health. Note: can't grow plants without biology. 

References provided for this class: 

1. Hands-on Agronomy by Neal Kinsey
2. Minerals for the Genetic Code by Charles Walters
3. Nutrition Rules by Graeme Sait
4. Soil Biology Primer by Soil and Water Conservation Society
5. Non-Toxic Farming Handbook by Phillip Wheeler & Ronald Ward
6. Science in Agriculture by Arden B. Anderson
7. The Biological Farmer by Gary F. Zimmer

About FPIES

From The FPIES Foundation

About FPIES

Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. Furthermore, the negative allergy evaluation may delay the diagnosis and take the focus off the causative food. Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger.  Read more.....

FPIES: An Update on Natural History and Review of Management

Food Protein-Induced Enterocolitis Syndrome: An Update On Natural History and Review of Management

I love new articles on FPIES.   The above article was just published in August, and it is FULL of GREAT information.   It is a terrific synopsis of what has been studied thus far in FPIES, and how it is currently best managed.  Dr.Nowak-Wegrzyn has authored some great articles lately and it is exciting to see.   Most exciting to see is the table on page 2 giving descriptions for Chronic and Acute FPIES.   My son suffered from chronic FPIES which made his diagnosis more difficult to come to, as his acute reactions weren't happening as frequently as his chronic reactions.   It was a very muddy picture, it still is a muddy picture because his body reacts chronically as we seek to introduce foods- he "builds" to a reaction vs. having an acute shock reaction from the first 1/2tsp of food.  The acute shock reactions have been what has been studied over the past 20yrs. (rightly so due to their severity), now it appears groundwork is being laid to further study and define Chronic FPIES that so many other FPIES kids experience as well.

This is a great article, giving good descriptions for the history of FPIES and definitions of what is known about diagnosis and management of it.    It really is exciting to see so much being studied, and further recognized in the past year.  

An FPIES Toolbox

FPIES is a puzzle, it does not fit in a box.   The diagnosis can be complex, untreated symptoms leading to new symptoms...it can be chronic or classic.  No child seems to be the same- no triggers the same, response to treatments vary.  It is medically complex. 

Personally, I started my toolbox very empty, I began to fill it with: nuts and bolts (ie FPIES studies). Then came the nails that secures me in place with all the shared knowledge (ie FPIES families).  Then a few hammer's of varying sizes (ie to hammer in a point)- did you know kids can react to meat because of the feed that an animal eats? And that they can react to the proteins in mothers breastmilk? Then a few other tools to fill in the gaps:  Food Family Lists and Janice Vickerstaff guide to food introductions, as well as resources such as PIC and books like GAPS; all can fill in some holes here and there- used as tools to guide, taking bits and pieces of knowledge to apply to our puzzle.  Some glue has come along and proven to be quite effective already- ever use gorilla glue? (ie Probiotics).  Some screws were needed (diagnostic tests), not to test for FPIES but to rule out other related medical conditions (such as Eosinophilic Disorders and Celiac Disease.   A good variety of screwdrivers is very helpful to tighten up the seams (ie Allergist, GI, Dietitian, Pediatrician).  Every good household toolbox needs a flashlight, we found some light in research on Non-IgE food allergy to shed a good light on my thought process on individualization and the Immune and Gut involvement for the FPIES puzzle.  A good toolbox to keep all of this in is essential, FPIES kids don't fit in any square box but the corners of Functional Medicine makes a good bag to carry all of this in.   

I continue to look for new tools daily to fill my toolbox(bag) with, to help manage this chronic illness.   . If you need some tools for the journey you are on right now- there is an excellent toolbox filled already with some nuts and bolts (such as an ER letter, articles to bring to your pediatrician to help diagnosis, and food journals,...) here:       The FPIES Foundation

A Rare Food Allergy Doctors Know Little About

Med Watch: A rare food allergy doctors know little about.

Another FPIES family in the news.   The family's story is something that hits close to home for many FPIES families...."I googled baby vomits rice cereal"- wow, did we all do that?  Because who in the heck is allergic to rice?  FPIES kids are, it's bizarre but very real, and scary.   This mom's account of her daughter's reaction is an emotional account for any FPIES parent, as her daughter is one of the numbers of FPIES that went into full shock with the ingestion of rice.  The statistics show that ~20% of FPIES children do (although I would dispute that number to be much higher based on what is shared in support groups).  The interview is a window into an FPIES families world. 

The news report includes an interview from the family physician who helps manage their daughters care, with emphasis on the need for ruling out other conditions, and the symptoms caused from an FPIES reaction. 

Thank you to Ginny and her mom for a great awareness story on FPIES!

Food Protein Induced Enterocolitis Syndrome: Diagnosis and Prognosis for FPIES

I always enjoy finding further updates, as well as medical and personal insights, written on FPIES.   The perspectives of this little known clinical diagnosis are always interesting to read when you have a child with FPIES.  View two well written articles here on Helium: Food Protein Induced EnterocolitisSyndrome: Diagnosis and Prognosis for FPIES.

The first, written by Dr.Nichole Evans is an informative synopsis of the the Up To Date article reviewed and updated in May 2011 on Food protein-induced proctitis/colitis, enteropathy, and enterocolitis of infancy and written by Dr. Alan M Lake, Associate Professor of Pediatrics Johns Hopkins University School of Medicine. 

Dr.Evans outlines the Up To Date article nicely.  "Food protein induced enterocolitis syndrome, also known as FPIES, is the most severe of all food protein-induced gastrointestinal diseases in infants".  She goes on to outline the diagnosis of FPIES, based on recognition of symptoms and by monitoring response to elimination of offending proteins as well as endoscopy to rule out other conditions that may cause similar symptoms in infants.  She concludes that "FPIES is an uncommon allergic disorder diagnosed by clinical features, endoscopic investigation and response to dietary management".   

The next, by Dr. Pandula Siribaddana, provides a summary of the diagnosis and prognosis of FPIES utilizing two comprehensive references:
1). In 2008: "Enterocolitis Syndrome: Consensus Recommendations for Diagnosis and Treatment"  written by the Japanese Research Group for Neonatal, Infantile, Allergic Disorders.   Which I also, personally, have found to be a useful resource of information. 
2). In 2009: Food Protein-Induced Enterocolitis Syndrome (FPIES) - a review from the UK Current Allergy & Clinical Immunology.  Which happens to be one of my personal top resource articles on FPIES. 

Dr. Siribaddana's article starts strong with "If ever there were a disease, which has been extensively under diagnosed and poorly managed, food protein induced enterocolitis syndrome (FPIES) would be right up in the list".  He goes on to highlight the "possibility of serious complications, if not managed properly" and that "it's pathological basis is a svere cell-mediated-hypersensitivity reaction (non-IgE mediated) within the gut mucosa".  His review provides the five-step process for diagnostic criteria set forth by the Japanese Research Group for Neonatal, Infantile, Allergic Disorders; which covers the symptoms, differential diagnosis, appropriate milk, body weight gain, and food challenges.

He concludes with a pivotal message to physicians, "although the paper was a consensus statement, it does not necessarily mean all affected infants and children should be managed in a similar manner.  However, following the guidelines would reduce the chances of missing FPIES, which would bring long-term benefits and improved prognosis for sufferers". 

FPIES makes National News on Good Morning America!

Parents Limit Child to less than 10 foods is the title of the Good Morning America segment dedicated to raising awareness of FPIES through a family's story.  This family, also has started a research Fund, I have mentioned here before:  FPIES United Family Fund.   

The title is deceiving but eye catching and eye catching is awareness.  We need to continue to raise awareness, that from the outside looking in, despite how it looks from the outside- our children are sick and our families are struggling because of the lack of awareness and treatment plans. 

Take a moment to view the video, if you have not already watched it.   Good Morning America did a good job in covering several of the aspects that FPIES families share.

"In truth, question everything"....

This blog post on an allergy blog I follow: Grading the Severity of your Allergy: Sensitivity vs. Reaction Level, gives good advice on how to decipher your reaction levels, your severity.  What do you (or your child) react to?   Everything in the air?  Cross contamination?  Trace proteins?  Food families? Through breastmilk?  Through feed from the animal contaminating the meat?  Through formula?  On the skin?

With Non-IgE allergy, just as with an IgE Allergy, even the blood and skin tests will not tell the severity of an allergy; it will only tell the positive antibody production and the probability of reaction.   The only tried and true way to tell a person's reaction level is by testing it with elimination and challenge.  Eliminate the food from the diet, if symptoms subside, there are good chances you are allergic and need to eliminate that food, and all derivatives of it from the diet.  Some reaction symptoms are obvious enough you don't have to, nor would you want to, challenge the food.   A challenge would consist of a re-introduction of the food once suspected symptoms have resolved.  This challenge can also help determine severity of the allergy; as addressed in the above blog article.   Some people react to any and all minute derivatives or cross contamination of the allergen, some can handle derivatives or oils, etc.  The only true way to know is to challenge, and in the meantime- question everything.

Key Points from The Guidelines for the Diagnosis and Management of Food Allergy in the United States: Summary for Patients, Families, and Caregivers.

Guidelines for the Diagnosis and Management of Food Allergy in the United States:  Summary for Patients, Families, and Caregivers.

A publication by the National Institute of Allergy and Infectious Diseases

This publication was developed for patients, families and caregivers based from, The Guidelines for the Diagnosis and Management of Food Allergy in the United States: Report of the NIAID Sponsored Expert Panel, released in December, 2010 and written to provide medical professionals with the most up-to-date clinical advice on how to care for patients with food allergy.    A panel of experts developed the Guidelines based on recent scientific publications of food allergy.   An outline of this document was covered in a previous post here: New Guidelines for Diagnosis.

Key points from this publication specific to Non-IgE- mediated food allergy are:

Introduction:

·         The Guidelines include definitions of food allergy and related disorders, with recommendations for diagnosis and management.

Food Allergy Prevalence and Associated Disorders:

·         Defines Food Allergy “an adverse health effect arising from a specific immune response that occurs reproducibly on exposure to a given food.”

·         Definition of Food Allergen, “parts of a food or ingredients within a food (usually protein) that are recognized by immune cells”.  It goes on to clarify that most food allergens cause reactions even after they have been cooked or digested but that some allergens (most often fruits and vegetables) can cause allergic reactions only when eaten raw.  And oils (such as soy, corn, peanut, and sesame) may or may not cause an allergic reaction, depending on how it is processed.

·         Defines IgE and Non-IgE.  “Non-IgE mediated- the symptoms are the result of interaction of the allergen with the immune system, but the interaction does not involve an IgE antibody”.

·         Conditions that can occur with food allergy: “if someone has food allergy, he or she is more likely to have asthma, eczema, eosinophilic esophagitis (EoE), or exercise-induced anaphylaxis”.

Diagnosis of Food Allergy:

·         Food allergic reactions may be IgE-mediated or Non-IgE-mediated, or both.  The chapter, on page 9 gives some guidelines for when your healthcare provider should consider food allergy diagnosis.

·         Table A: Symptoms of Allergic reactions caused by food is on page 10.  You may notice similar language to the PIC article written for Non-IgE Food Allergy as The Guidelines are keys in our references for that information and table provided.

·         “How should your healthcare professional diagnosis Non-IgE-mediated food allergy?” is covered on page 16.  Examples given: Eosinophilic GI diseases (EGID)- clarifying that EoE is a mixed IgE/Non-IgE-mediated disorder; Food Protein Induced Enterocolitis Syndrome (FPIES); Food Protein-Induced Allergic Proctocolitis (AP); Allergic contact dermatitis (ACD); and Systemic contact dermatitis.  The coinciding guidelines, within The Guidelines, is given with brief descriptions of these disorders here.

·         Table C, on page 17, gives tests to diagnosis Non-IgE-mediated food allergy.

Management of Nonacute Allergic Reactions and Prevention of Food Allergy:

·         Avoidance of the food allergen following diagnosis of IgE, Non-IgE, or food allergy in combination with eczema, allergy, or EoE, is the safest way for management of food allergy at this time.

·         EoE, eczema, asthma may have influences not related to food allergy.

·         Children diagnosed with food allergy should receive nutritional counseling, growth monitoring, and training on understanding ingredient lists.

·         Know that there is a law, the U.S Food Allergen Labeling and Consumer Protection Act of 2004 that “requires food labels to list which of the eight major food allergens (milk, egg, peanut, tree nut, soy, wheat, fish, and crustacean shellfish) are present as ingredients in prepared foods.  However the law does not require or suggest wording for warning labels, such as “may contain trace amounts of nuts” or “may be prepared in a facility that also uses nuts”.  The inclusion of these warning labels is voluntary.

·         There are currently no medications available to prevent and treat allergic reactions caused by foods.   Oral immunotherapy is currently being studied.  There are active clinical trials: http://www.clinicaltrials.gov

·         Recommendations, including a helpful table, for vaccines and egg allergy on page 20-21.

·         Discussions on prevention of food allergy on pages 22-24.

Diagnosis and Management of Anaphylaxis Caused by Food

·         Symptoms and treatment of anaphylaxis (IgE) allergy, including a Sample Anaphylaxis Emergency Action Plan

Glossary

·         Listed on page 30 gives a glossary for the many terms used in this summary that may be new to the reader.

It should be noted that the Guidelines for medical professionals are “a resource to guide clinical practice and to help develop educational materials for patients, their families, caregivers and the public.  They do not override your doctor’s responsibility to make decisions appropriate to your circumstances”.

The Summary for Patients, Families and Caregivers can be viewed at the website below, and printed or you can request a copy to be mailed from NIAID.  I strongly suggest you read it and become empowered with the knowledge you need to manage food allergy for your family, in your doctor’s office, and in your home.   It is great progress to see these key points of Non-IgE allergy being recognized and discussed as important in the diagnosis of food allergy for our children.

The Guidelines can be viewed here: Guidelines for the Diagnosis and Management of Food Allergy in the United States

The Summary can be viewed here: Summary for Patients, Families and Caregivers

Food and Symptom Logs & Journals

Journals/logs are an important tool for the delayed reactions of Non-IgE Allergy.

Journals have been incredibly helpful.   The logging can be tedious but it is very reflective- which is incredibly helpful for seeing larger patterns to the chronic nature of FPIES.  It is particularly helpful, almost critical, to do them during food trials.  

Here are some examples of ones I have used:

Date:

12am

1am

2am

3am

4am

5am

6am

7am

8am

9am

10am

11am

Formula:

Probiotic:

Food:

Diapers:

Reactions:

Notes:

DAY	TIME	Food/Formula/Med	Reaction:	Notes:
	2am	8oz.
	3:30am	7oz.
	6:30am	4oz.
	8:30am

Date	Food Trial	Med/ Probiotic	Formula Total oz.	Calories	Reactions	Notes