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Cyclical Vomiting Disease, Eczema and A Distended Belly – My Daughter’s Story - Zesty Ginger
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When my daughter Lily was 2, she started having eczema patches on her legs. I brought this rash up to my daughter’s pediatrician and it was brushed off as something that is really common and not to worry.  She was offered a corticosteroid cream, which is a topical cream made with hydrocortisone steroids, that will quickly relieve itching and reduce inflammation.

At this point I was very new to the “holistic” world of health and way of living, but I was still skeptical.  What caused the rash? Why was this happening to her? I know my daughter doesn’t have a hydrocortisone deficiency, so although possibly helpful,  it didn’t seem like this would actually be getting to the root cause of her eczema. Also, my husband and I had never experienced eczema or had rashes like this when we were kids, so what was going on?

I turned down the cream and started my research.

At the time, I had just started studying nutrition at the Institute of Integrative Nutrition. I am embarrassed to admit that even while studying nutrition, I didn’t make a connection that the rash could be linked to my daughter’s diet.  

Food?!  How could this be?  I had always eaten almost all foods “without a problem”.  We had never been a fast-food, McDonalds kind of family, but we definitely were a ‘whole grain pasta dinner with a buttered roll on the side’ kind of a family.

When you need an answer to a question about your child, the fastest route is to ask other moms!  This is especially true with other moms who have been through your struggle and have come out alive on the other side.

While talking with other moms, the answer was immediately obvious.  They said, “It’s probably a food sensitivity. Start by eliminating gluten and dairy since these are the most common sensitivities in children with eczema.  Corn, soy and eggs should be evaluated next if removing gluten and dairy didn’t help.”

Within 3 days of removing gluten and dairy, my daughter’s rash was 95% gone!!!  A rash that had been solidly planted on her body for almost 8 weeks disappeared within days.  This was amazingly powerful to watch.

I felt empowered.

Although the rash disappeared, I noticed that Lily didn’t look quite like the other kids.  That cute baby fat and protruding belly that is so common on 2 year olds was starting to disappear in her classmates.  She was the only one of her classmates with a solid distended belly. Not only was her belly large, but her arms and legs were very skinny and looking malnourished.

And then the other kids started to notice.  Lily came home and questioned “Mama, a boy at school asked me why my belly is so big? Why is it so big?”.

Ugh, even at 3 years old kids were already starting to comment on the shape and size of my daughter?!

At this point, we had completely overhauled our diet and were consuming whole foods like fruits and vegetables, organic grass-fed meats and very few processed foods. We were 100% gluten and dairy free.  She would happily drink bone broth, chew on homemade gelatin gummies and even eat sauerkraut out of the jar.

This didn’t seem quite right.

In addition to the distended belly, Lily also started to complain quite often of bellyaches.  “My tummy hurts” echoed after many meals. After eating at almost every restaurant she would run straight to the bathroom with diarrhea.  The quality of food at the restaurant didn’t seem to matter. Even a basic meal of salmon, broccoli and carrots from a food to table organic restaurant still sent her running to the bathroom.

The stomachaches turned into frequent vomiting.  She would act and look completely fine, throw up and then go back on her way.  She never had a fever, never seemed sick and it never slowed her down.

I kept expecting to get whatever stomach flu was going around and I never did.  And then a few days to a few months later the same episode would happen.

It was suggested by her pediatrician that she see a GI specialist.  At this point, I was studying to become a Functional Diagnostic Nutrition Practitioner and was clued into the fact that we really needed to look at what was going on in her gut.  

Per my request at the doctor’s office, they ran a stool test (but only 1 day sample) and a blood test for Celiac disease.

This didn’t lead to any answers.

Nothing showed up on the stool test and the Celiac results were invalid.  I later learned that she needed to be eating gluten daily for at least 2 weeks prior to the test in order for the antibodies to show up accurately.  I only fed her 2 pieces of bread the 2 days leading up to the test because I was worried about what it would do to her belly.

Not following the instructions came at a price, it turned out to be a waste of a blood draw (not an easy thing with a 3 year old)!  If you are considering going gluten free for yourself or your child and are concerned about Celiac Disease, I suggest that you test before you remove wheat and gluten from your diet.

I was left with a “diagnosis” of Cyclical Vomiting Disease.

Cyclical Vomiting Disease?  What causes that? The cause seemed to be unknown.

The internet told me –  “Cyclic vomiting syndrome, sometimes referred to as CVS, is an increasingly recognized disorder with sudden, repeated attacks—also called episodes—of severe nausea, vomiting, and physical exhaustion that occur with no apparent cause. The episodes can last from a few hours to several days. The disorder can affect a person for months, years, or decades. Each episode of cyclic vomiting syndrome is usually similar to previous ones, meaning that episodes tend to start at the same time of day, last the same length of time, and occur with the same symptoms and level of intensity.”

Again, I decided to listen to my mama bear gut instinct and dig a little deeper.  I am so glad that I did. As moms (and dads), I think the most important thing we can do is to advocate for our children when something doesn’t feel right.  It may be awkward or inconvenient and you might have to get a new healthcare team, but I think it is worth it.

Turning to functional medicine, we were able to find some more clues.   We uncovered a bacterial overgrowth and dysbiosis, meaning she had more of the ‘bad’ bacteria than the good guys.  She also had extremely high histamine and was having a clear immune response reaction to dietary proteins (gluten, corn, soy, egg & dairy).

If you are interested in exactly what we tested, and what I would do differently now that I have attended Chris Kresser’s ADAPT training, you can check that out here In my blog post Eczema, Gut Complaints & How to troubleshoot health concerns for your children.