Update: Things Are Still Shitty, haha. Our FPIES Diagnosis.

An update to my previous blog about our diarrhea, ER visits, and lethargic toddler...

If you haven't a clue what I'm talking about, you can find the first part of our journey here.

We received the phone call to see the pediatrician. I'll be the first to say it was an utter waste of our time. Mostly she had us tell our entire story, once again, and then gave us requisites to get updated test results. COULD WE NOT HAVE DONE THE TESTS AND THEN HAD THIS 2 HOUR APPOINTMENT??

I digress...

Hi blood tests, ultrasound, and stool samples showed slight improvements, but still had indicators of a problem. He had elevated inflammation markers and correlating high/low RBC, WBC, Platelet, etc numbers. He also showed charcot-leyden crystals in his stool samples. These crystals are the breakdown products of eosinophils and maybe found in the feces and sputum of people with tissue-invading parasitic infections (ew!) or various allergic reactions (source).

The pediatrician suggested we eliminate lactose only for now and see how he does.

Lactose-free for four or five days was all we lasted before we decided to eliminate all dairy. For us, this meant yogurt, milk, cheese, etc. We weren't reading labels for all milk-protein, etc. This went okay until he had "cheese puffs". We thought, "how much cheese is actually in there?". Well turns out it was enough to cause a reaction. So we cut all dairy ingredients. He was reacting to goldfish at this point too.

He was a different kid without dairy!

The only thing that wasn't as good as it should be was his eczema, and his poops were still soft.

Since we were already experimenting, and he was eating eggs everyday, we decided to remove eggs from his diet, just to see if things improved.

Symptoms have improved and it seems that he is sensitive to eggs. We plan to follow the food ladder for eggs to reintroduce them in 6-12 months based on the instruction from our pediatrician.

Based on this information, our pediatrician was confident in diagnosing Bubs with FPIES.

What is FPIES?

Food protein-induced enterocolitis syndrome (FPIES), is a delayed (non-IgE mediated) gut allergic reaction to a food(s), usually presenting in the first two years of life, with an estimated incidence in this age group of 1 in 7,000 children. FPIES can occur in adults, although this is uncommon.

What does non-IgE mediated mean?

Non-IgE mediated food allergies are caused by a reaction involving other components of the immune system apart from IgE antibodies. The reactions do not appear immediately after the ingestion of the food and usually relate to reactions in the gastrointestinal tract such as vomiting, bloating and diarrhea.

The Tricky Part of FPIES

Unlike IgE mediated food allergy there are no blood or skin tests which have proved useful in general medical practice. Therefore the diagnoses must be suspected on the history and may be confirmed by observing that the symptoms improve when the suspected food is removed from the diet and return when the food is reintroduced into the diet. This process can take a number of weeks or months to complete properly and is termed the eliminate-rechallenge test.

What Does a "Reaction" Look Like?

For Bubs (all kids will be different), he develops the following:

-Rash all over his body, starting on his tummy

-The rash seems to turn into a bad eczema flare-up that will last a week or more

-Distended, hard belly (bloating)

-Diarrhea and mucous in the stool that will last 4-7 days or more

-Airway swelling, wheeziness

-Lethargic

-Cranky, grumpy, uncomfortable

Aren't Kids Diagnosed with FPIES earlier than 18mths?

Usually FPIES is diagnosed between 0-24 months of age. Bubs had severe oral ties which impacted his gastro-intestinal health right from Day One. He always had a distended belly, and as new parents, we just thought he was a pudgy baby. He has had eczema problems from Day One as well. Because of his issues with oral ties, we didn't really have a good "baseline" so we just thought what we now know as FPIES symptoms, were just "normal" for him.

Our pediatrician believes that he may have caught the stomach flu in December and it severely amplified the symptoms to what we are seeing now because of the pH shift in the gut's microbiome that the stomach flu can cause.

The Ties Between Allergies and Mental/Emotional/Behaviour/Etc.

My mom has always told me I am "a different person" when I have been "glutened". I didn't truly realize the tie to mental health, emotional regulation, behaviour, etc. that an allergic reaction can have until going through this experience with Bubs.

When you ingest an allergen, the body begins to product Histamine. Histamine contributes to the progression of allergic-inflammatory responses by enhancement of the secretion of pro-inflammatory cytokines. The resulting inflammation in the brain from the production of cytokines can lead to meltdowns, irritability, anxiety, depression, brain fog and more.

When we eliminated all dairy and eggs from Bubs' diet, within 2-3 weeks we noticed he had not had a single melt-down, tantrum, grumpy day, etc. We actually couldn't believe it!