Incredibly Story – A Mother’s Journey in Raising Celiac Triplets

Fowler kids

In addition to sharing the story of the Fowler family and their journey through all things gluten-free and celiac, I’d like to also announce that all 4 children including Tyler (7 yrs), Parker, Isabell and Peyton (4 yr old triplets), pictured above in their Halloween costumes, were the winners of the October Danny the Dragon contest as part of the Danny the Dragon Gluten-Free “Halloween” cupcake party which I hosted in Florida.

The kids received a Danny the Dragon gift basket loaded with goodies and Danny the Dragon give-aways!

Fowler family story:

Our Celiac Disease Journey started in May of 2007, the triplets were about to turn two and I was questioning the doctor about their small stature. Like most, the belief was that there were 3 of them, so it might just be their size, but at their two year check up we would run more tests if they had not gained any weight.  No surprise, their two year check up came and the girls had failed to put on ANY weight in the 6 month period prior to their checkup.

At that point, we decided to see the Pediatric GI here in St. Pete, FL who immediately thought Celiac or Cystic Fibrosis. He was pretty optimistic and we were sent home wishing for an auto immune disease.  Being a mom with Rheumatoid Arthritis, Auto-immune hepatitis and Thyroid Disease (all auto immune diseases), I only began to worry about what the girls health would look like in the future. Not a promising outlook but the Celiac diagnosis was manageable and that is what we were hoping for.

Halloween 2007 we spent the majority of the day screening at All Childrens Hospital for Celiac and Cycstic Fibrosis. The girls were poked, and encouraged to sweat for their tests, so we walked the halls of All Childrens prompting them with Candy corn.

Long story short, the results were Celiac Disease and after their biopsy’s we learned their small intestines had been effected and they were no longer absorbing the nutrients they needed to grow.  AHHHHHHHHHHH at last a diagnosis, now to change the diet.

My husband and I left the hospital that day and went straight to the health food store in St. Pete and began our Gluten Free lifestyle.  We also have a 7 yr old soon (5 at time of diagnosis) and another son (the 3rd triplet), both who do not have Celiac, so we knew we were in for a big change.

The transition went better than expected and within 6 months the girls blood levels had balanced off and were within normal range.  We finally saw the weight gain, and they were beginning to look like big kids, instead of a year or two younger than they actually were.

The girls are now getting close to being on the growth charts, and are showing signs of growth all around. We still hear that they are small because they were multiples but at least now we know it is not their diets causing it. Overall you can see they are eating more of what they like and just feeling better.

It is a big adjustment to make, but it is manageable and with the right attitude and support you can fine tune the diet so that no child is left out or feels “different” because of what they eat. My girls are sure to ask at every outing, “is it gluten free?”, and that alone puts a smile on my face.  Ms. Fowler

From our home to yours, Miranda Jade.


About Us

I'm a cookbook-collecting, recipe-developing paleo junkie, and I live in the kitchen. I'm hooked on farmers' markets, traveling, eating healthy, and hiking until my legs scream at me. There's nothing better than hanging out with family and good friends. I have fun and sleeping is just plain boring. Read more About Tina Turbin.


2 thoughts on “Incredibly Story – A Mother’s Journey in Raising Celiac Triplets

  1. Hi Tina,
    I just thought I would forward to you a letter a wrote
    and sent out to any and all CD research centers and organizations I
    could! I guess if you read it, it tells it all, but I will briefly
    recap for you.

    We just got back from a road trip in which eating was
    just way TOO hard! Mostly fruit and cheese ad nauseum—with the kids
    eating a lot of candy. I guess I should have researched for weeks
    before our trip to see what and where we could eat—but give me a
    break. It shouldn’t be this hard! And my sister in law shouldn’t be
    having SUCH a hard time getting a test for her daughter who is
    suffering daily. Sheesh! I dont’ have much mobility in my life
    right now—but I want to help. I want to help get the word out to
    people, doctors and the nation—even the Govt so food companies start
    complying too and there is MORE non-gluten filled food to eat in a
    10,000 sq ft grocery store than just fruits and cheese!!! Katie
    To Whom It May Concern,
    I am writing this letter to you to perhaps get some commentary from you as
    to the state of CD in the USA. I personally have CD, along with my
    husband and 2 children. Conventional testing through the doctor’s
    office didn’t tell us much. We started with the Prometheus Labs
    complete celiac panel for my husband and daughter, who had the most
    obvious symptoms. Our daughter’s blood work suggested Celiac, but
    said HLA testing would basically confirm it. My husband’s blood test
    was completely negative. Since we have no health insurance coverage
    due to the cost as self employed persons, we decided to test further
    with Enterolab for the whole family, including HLA testing. Those
    results showed 3 of us with DQ8 and our son with DQ1. I know that
    apparently this test is not verified among the standard medical
    community, but it was the test that showed us clearly what was going on
    with our bodies. After those results came back glaringly positive in
    2005, our entire family went GF with COMPLETE resolution of ALL
    symptoms! Complete resolution of joint aches and pains, bloody noses
    in the kids, headaches, bone pain, GERD, gas, stomach pains, eye
    problems, psoriasis patches, bloating, brain fog, extreme crankiness in
    the kids. But apparently, we don’t actually have ‘verified’ Celiac
    Disease because of our testing lab—even though going GF completely
    resolved us of our symptoms and now inadvertently eating even minute
    amounts of gluten can bring back those symptoms very severely!
    Right now, my sister-in-law has a daughter who writhes every day with
    stomachaches and constipation, is very cranky, has ‘asthma’ and just
    says daily “I don’t feel good. I hurt everywhere.” Because our
    daugher, her cousin, HAS CD and had the exact same symptoms that were
    misdiagnosed with the same excuses for 13 years, I sent my
    sister-in-law to our local clinic with the Prometheus testing
    information printed out AND an informational sheet from University of
    Chicago Celiac Disease Center about how important it is to get regular
    testing in first degree relatives and to do DNA testing. To
    date—-this child has had 3 stomach x-rays, has been ordered repeated
    enemas but the clinic WILL NOT order the Prometheus testing and
    apparently there is a question as to whether insurance will pay for
    testing—especially the DNA testing!!! WHY?! Apparently, the
    numbers of CD in this country are at about 1/100—–with only 3 of
    those 100 diagnosed. WHY?! Why is there STILL so much
    misinformation like “CD is extremely rare”, or “She can’t have CD
    because it doesn’t show up until. the 40’s”. Why will my
    sister-in-laws insurance pay for repeated x-rays, enemas, drugs but NOT
    CD testing??? Why will the Doctors test for everything else BUT
    CD??? What has to happen in this country to get the word out about CD
    and how common it is—especially to doctors?? My family and I
    just got back from a driving trip from Idaho to Palm Desert, CA. We
    chose to drive because we can bring our food and appliances with us and
    use them at our destination because finding hot GF food is VERY
    difficult in the USA. In fact, in just about every single town these
    days there are all the same strip malls with all the same chain
    restaurants that serve pretty much 100% gluten filled foods—-without
    any accomodation or understanding or knowledge of not only what GF
    is—but how to safely prepare GF foods. It seems ridiculous to me
    and my family that as we travel, we can eat only the foods we bring,
    and when we run out of those foods the only truly safe foods for us are
    cold fruits, veggies and cheese from a grocery store—even though
    there may be 10 different restaurants with wonderful smells coming from
    them right in front of our faces. Because we know that hurdle we face
    trying to educate a manager or food server or cook staff quickly on how
    to prepare food safely for us—-especially if they have never heard of
    CD. So—on this trip we ate cold food most of the time and finally
    took a chance at In N Out Burger, the only place that only has 1 source
    of gluten—the buns. I’m pretty sure we all got glutented, but that
    was the chance that we had to take to eat a hot meal!! The grocery
    stores had NO GF selections and a health food store that we visited
    that claimed they could do GF was sadly ignorant that GF isn’t the same
    as Vegetarian. So—my question to you is WHAT do we have to do to
    raise awareness for those of us dealing with CD?! WHAT is it going to
    take to get the word out in this country that gluten in EVERY SINGLE
    FOOD ITEM FROM THE FOOD ITSELF TO ALL SEASONINGS AND OTHER
    INGREDIENTS is a BAD thing? WHAT is it going to take to get the
    Medical Community to understand that gluten is everywhere making most
    people sick? WHY is it so hard to get a definitive diagnosis—even
    using the “Gold” Standard of biopsy and blood testing due to high false
    negative numbers?? Why is there little to no knowledge or
    understanding of gluten intolerance—-or even that there could
    possibly be Gluten Spectrum Disorders along the lines of Autism
    Spectrum Disorders in which doctors understand that before CD actually
    occurs—it can start with gluten intolerance that becomes gradually
    worse until the damage of CD is visible?? I am a wife and a mother
    who is FED UP with ignorance and silence about CD. I want to help get
    the word out, I want to advocate loudly and proudly about this
    ‘disease’ my family suffers from. We suffer because it is SO hard to
    eat out and travel in the USA with a food disease—because American
    food is all about gluten. I would like to get the opinion of you that
    are working in this field as to how to change this and how to advocate
    for something that most people still think is a Mental Illness or
    Psychosomatic, especially if we are going to have National Health Care!
    Thank you so much for taking the time to read this long letter. As
    you can tell, I am frustrated and am looking for answers.
    Katie Berry

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