A Gluten-Free Vegan Mom Who Knows

A raw, grain-free, corn-free, soy-free, oil-free, celiac mama raising her two healthy celiac girls.

My Premature Daughter’s Casein Allergy

| 7 Comments

Ainsley was less than three weeks old (born two months early) when she was ‘diagnosed’ with colic and reflux – she was given the wrong diagnosis.

I kept asserting that there was something else wrong, but her doctor merely said, “If I had a nickel every time a new mother said…” Ugh. Whatever! After I left, I went home and immediately began my own research.

After an afternoon of researching online, I decided to cut out all eight allergens and then decided to add them back into my diet one by one. Once all eight allergens were out of my diet, she was a different baby, and since I was allergic to casein when I was a baby, I added that one back in first. Viola! There it was!

Nevertheless, once I knew which foods to avoid, Ainsley was no longer writhing in pain when she nursed (her reaction was instant), she slept more than an hour at a time, and she finally was a happy, content baby.  When she was exposed to casein, her intestinal track would seize and spasm, which was extremely painful.

At Ainsley’s visit following my discovery, her doctor said, “That makes sense.” Double Ugh! The one thing Ainsley’s doctor was good for was for alerting me that when looking for casein on a label, it went by many names. However, since he didn’t have a list of those names, I had to conduct my own research yet again.

Here are the ingredients to look for when avoiding casein – these ingredients may/do contain milk protein:

• ammonium

• butter

• artificial butter

• butter solids/fat

• calcium

• caramel color

• caramel flavoring

• casein

• caseinate

• ammonium caseinate

• calcium caseinate

• hydrolyzed casein

• iron caseinate

• magnesium caseinate

• potassium caseinate

• rennet casein

• sodium caseinate

• sodium caseinate solids

• zinc caseinate

• cheese

• cream

• curds

• flavoring

• high protein flour

• lactalbumin

• lactalbumin phosphate

• lactoferrin

• lactaglobulin

• lactose

• magnesium

• margarine

• milk

• buttermilk

• milk derivative

• milk fat

• milk protein

• milk solids

• skim milk

• powdered milk

• dried milk

• dry milk solids

• sour milk solids

• hydrolyzed milk protein

• natural flavoring

• Opta (fat replacer)

• Simplesse (fat replacer)

• sour cream solids

• whey

• delactosed whey

• demineralized whey

• whey protein concentrate

• whey powder

• yogurt

Be aware that “non-dairy” products may contain casein.

And for you non-vegetarians/vegans, milk may be a hidden allergen in many processed meats including bologna, hot dogs, pepperoni, salami, and sausage.

To think of our premature baby dealing
with a misdiagnosed casein allergy.
I’ll give you a nickel!!

Ainsley’s reaction to casein was similar to her reaction to gluten, extreme GI pain, irritability, disrupted sleep, et cetera. If I went out to eat and my meal was contaminated, she had an immediate reaction after her next feeding. It was a very difficult time, but like with our GF diet due to celiac disease, a clean casein-free diet was worth all the work and diligence.

When Ainsley was three weeks old, I went from being a pesco-vegetarian to a vegan – I gave up wild Alaskan salmon and dairy. I have been a vegan for almost 6 years. I am grateful for Ainsley’s allergy and happy I caught it at the beginning.

Don’t stop being your family’s advocate!

After sharing this post on Facebook, many of you have found yourselves in the same situation. During the thread I made a comment that I feel should be included here.

Here is that comment:

I can completely relate to the expensive formula! Ainsley was 8 months old (I was two months pregnant with Sydney and still an undiagnosed celiac) when I had to stop nursing because my weight was dropping too low (I’m 5’5″ and my weight dropped to 101 lbs). The only formula Ainsley could tolerate was Neocate (of which costs $35 for one 14 oz can) – it was awful figuring out the right formula, especially as her doctor kept suggesting brands to try before finally switching to Neocate. Luckily, after a month or two of paying for Neocate ourselves, Ainsley’s doctor informed us that our insurance would cover it since I physically could not nurse my baby and I was ordered to stop by my doctor. From then on, her formula was delivered to our house and all we had to pay was the delivery charge of $15 each month.

Sydney, however, was allergic to casein, eggs and she also reacted to caffeine. The casein and eggs didn’t matter since I was already a vegan; however, I had to give up my vegan chocolate – I was addicted, but thanks to Syd, my chocolate addiction is behind me.

Less than one month after I stopped nursing Sydney because I couldn’t keep weight on again (I dropped down to 100 lbs), I was diagnosed with CD, and then Sydney, and Ainsley, and Greg received their CD diagnosis shortly after. We all feel a million times better than we did before going gluten free; even though Greg and I went through the grieving process when giving up gluten, we can’t imagine life being any other way.

Much Love!  ~Priscilla

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