The Invisible Battle: Dairy, Egg, and Soy Allergies and FPIES

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Besides her stroke, E was born with a dairy protein allergy.  We discovered this when her colic grew worse and worse over her first 2 weeks…  It said in one of my baby books that babies commonly have cow milk protein allergy,  so I decided to cut cow milk proteins out of my diet (even ice cream, sigh).  Within a day the colic had basically ceased!

Since many children outgrow this milk protein allergy quickly, we didn’t think much of it.  At 6 months old, we introduced solid foods and followed baby-led weaning.  This included yogurt and cheese, although we didn’t introduce cow milk until 2 years of age as I was still breastfeeding.  E didn’t seem to react to yogurt or cheese, and actually ate them quite often.

Homefree, right?

When E turned 18 months, she started to slowly but surely fall down the growth curves.  She had always been 50% for weight and height, and within 6 months had dropped down to 5-10% for weight and height.  We were referred to a nutritionist.

The nutritionist suggested Pediasure, a supplemental drink, and increased calories.  So…. never one to do things in moderation, I loaded her up with milkshakes made with whipping cream, Haagen-Daas ice cream, and made her homemade yogurt out of 35% whipping cream.  She started periodically vomiting in the middle of the night.  At first, it seemed very random and we assumed she was fighting viral GI infections.  She seemed healthy and happy otherwise.

When she was 2, she had a particularly dairy-rich day, and vomited her supper and dessert all over the place.

Who had ever heard of allergies expressing themselves in a GI reaction?  We started tracking her oral intake via detailed food diaries and were finally able to connect dairy intake with episodes of vomiting.  It took quite a bit to produce an acute reaction; most were delayed-onset (6-8 hours later).

We cut back her dairy (not completely) and put her on soy milk instead.

Unfortunately, those with dairy allergies can often develop soy allergies (who knew?!?).  When the reactions went down but then picked up again after a few days/weeks, we were able to point to soy as another culprit.

At this point she was still able to tolerate small amounts of dairy in things, and seemed pretty stable (vomiting only once a month or so).  Until we traveled for our first ABM (Anat Baniel Method) intensive.  She vomited every.single.night. in our hotel room.  Sometimes multiple times.  This was a very frustrating experience as we tried to figure out what was going on.  It is so hard to clean up in a hotel room with limited supplies and laundry!!!

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What caused this sudden downward turn of events????  We finally pinpointed margarine.  There is whey (milk protein) in margarine, and we had been putting it on/in her food.

Upon returning home, we tried to follow an elimination diet (super difficult with a picky toddler, so we just avoided the Big 7 – dairy, soy, egg, shellfish, peanut, tree nut, and fish – she couldn’t live without wheat…).  We were able to determine egg proteins, soy protein, and dairy proteins as her allergens.

So…. from vomiting randomly every month or two, to more regularly (about weekly), to daily… A diet strictly avoiding dairy, soy, and egg proteins eliminated the GI reactions.

We usually messed up once every month or two and a miniscule amount of an allergen would be in something she ate – this produced painful abdominal cramping, nausea, and vomiting.  One time it produced a systemic reaction of pallor (she turned pale and greyish), clammy hands, a feeling of dread, and then projectile vomiting.

Encouraged by papers that indicate many children outgrow dairy, egg, and soy allergies, we “challenged” her allergies after 2 years of eliminating them from her diet.  At this point we found out that she was no longer allergic to egg protein and can tolerate it in any form.  Unfortunately, she reacted to cow milk –  one drop of (a dilution of 1 drop cow milk in 40 drops water), mixed in 200 mL juice.  This time, she had more conventional symptoms of clear runny nose, sneezing, cough, and “dead tongue”. She tolerated 5-10 drops of soy milk, but reacted at 10-15 drops with abdominal cramping and diarrhea lasting for 8 hours.  So we are still avoiding dairy and soy completely.

Until this point E had been managed by her pediatrician, as GI reactions don’t show up positive on allergy tests – the only test for them is to do food challenges.  Since I was very confident with our food experiences (I had kept a detailed food diary for almost a year), the pediatrician was okay with it.  We now await a consultation with a pediatric allergist for more intensive allergy testing.  E had bloodwork for dairy protein, soy protein, and gluten allergy but I haven’t found out the results yet…

I *can* tell you that food allergies make more of an impact on our daily living than the stroke has…  Restaurants are out of the question, I have to pack her own foods and snacks for parties, school, daycare, etc…  At home, it is very manageable and we have adapted.  But any time we travel I am reminded how challenging it is!

UPDATE 1:  E’s bloodwork was all negative for allergic response to dairy, soy, and gluten (IgE and RAST) … still awaiting an allergist consultation (almost 2 yr wait list).  She continues to react to miniscule amounts of dairy and soy proteins.

UPDATE 2:  E had a consultation with a pediatric allergist, who did pinprick tests for whey, casein, and soy proteins.  She was negative for all 3.  He diagnosed her as likely having FPIES – Food Protein Induced Enterocolitis Syndrome.  At 7 years old we continue to food challenge her yearly to dairy and soy, and she continues to react with severe abdominal cramping and nausea/vomiting at tiny amounts or diarrhea at miniscule amounts.

Dairy, Egg, Soy Allergy and FPIES Articles:

Dietary Baked Milk Accelerates The Resolution of Cow’s Milk Allergy In Children

Food Allergy Research & Education

The Natural History of IgE-mediated cow’s milk Allergy

Cow’s Milk Allergy in Children

Food Allergy – WorldAllergy.org

What is 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.

FPIES Common Symptoms:

There are two ways that infants or children with FPIES might come to medical attention.

  1. The classic pattern of an FPIES reaction is when a healthy infant or child develops symptoms shortly after eating a food. There is a characteristic delay of 2-3 hours before onset of severe and repetitive vomiting and eventually diarrhea.  The child may appear very ill and sleepy (lethargic), and may become pale or blue.  When evaluated by a doctor, he/she may be found to have low blood pressure, seem dehydrated, and have blood tests that mimic infection (sepsis); which in some cases can lead to sepsis-like shock. Many infants who are eventually diagnosed with FPIES are initially suspected to have a severe infection or sepsis.
  2. The second common pattern of FPIES reaction symptoms occurs when infants who are ingesting a problem food (usually milk or soy-based formula or proteins in breast milk) as a consistent part of their diet might experience increasingly severe vomiting, diarrhea, and poor growth, possibly progressing to an illness mimicking a severe total-body infection. Please note that each child is unique and your child may experience their own range and intensity of these symptoms.

FPIES Common Triggers:

In the first months of life, FPIES reactions are most often caused by cow’s milk protein formula, and sometimes by soy.  Proteins in breast milk may also cause symptoms in some infants.

For infants experiencing FPIES with solid foods, rice and oats are the most common triggers. Current research reports other common triggers that include, but are not limited to, milk, soy, barley, poultry, peas, green beans, sweet potatoes, and squash. However, any food protein can be a trigger and some infants may be sensitive to other foods as well. In addition, some children may react to one or two foods whereas others may experience reactions to multiple foods.

FPIES Diagnosis and Testing:

FPIES is a non-IgE food allergy, which unlike classic food allergy, cannot be diagnosed with readily available food allergy tests such as skin prick test (SPT) or blood test that measure food IgE antibodies (RAST).  These tests are helpful to identify triggers for typical food allergies that result in immediate hives, wheezing, and swelling and are characteristically negative in FPIES.  An FPIES diagnosis is usually made by considering the history of the characteristic symptoms and exclusion of various alternative illnesses.  A medical doctor, often an allergist and/or gastroenterologist, should be involved in making the diagnosis. Although Atopy Patch testing (APT) is often used for FPIES patients, it is not considered a validated test for FPIES diagnosis.  Blood tests performed during a reaction may be helpful since the results often mimic the body’s response to infection.  The most definitive test is a medically supervised oral food challenge (OFC)-where the suspect food is given to the child in a controlled clinical environment. An oral food challenge, however, is not often needed initially if the doctor has excluded alternative illnesses and the medical history is consistent with FPIES.

FPIES Treatment and Course:

FPIES reactions can be severe. It is important to get to prompt medical attention where treatment, such as fluids given into the vein to help stabilize blood pressure and treat dehydration, can be given in order to avoid sepsis-like shock.  Although some doctors prescribe epinephrine to stabilize blood pressure before medical treatment, the main therapy is to get intravenous fluids; also steroids can be used to quell the immune reaction. Preparing a letter for potential trips to the ER, containing both FPIES information and a list of your child’s triggers, may be helpful.

Unfortunately, there are currently no simple tests for FPIES.  The primary test, as mentioned above, is a medically supervised oral food challenge with the trigger food.  The good news is that FPIES usually resolves with time.  Your child will need to be closely followed by his/her doctor to discuss what foods are safe to eat and when it may be time to determine if FPIES has resolved.  With proper medical attention and a personalized dietary plan to ensure proper nutrition, children with FPIES can grow and thrive.

SOURCE: FPIES FOUNDATION

I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad).  I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control.  You are already a part of this story, whether you know or believe it or not.  While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny.  Perhaps our coinciding struggles have been finely orchestrated to lead you to this one moment: The Bridge to God.

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“Praise be to the God and Father of our Lord Jesus Christ. The Father of compassion, the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow into our lives, so also should the comfort of Christ overflow.” (2 Corinthians 1:3-5)