THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Tuesday, May 1, 2012

And Celiac, So There's That.

May is Celiac Awareness Month!

It seems over the past several weeks, I've gotten more emails, Facebook messages, and texts from people inquiring about our experience with celiac than ever before.  I've already written out our diagnosis stories, but to kick of Celiac Awareness Month, I've decided to do a recap of our gluten-free journey.  I hope this will help to answer many of the questions I've been receiving...

Symptoms:

Sugar had celiac symptoms from the time she was an infant, sitting in a high chair picking up Cheerios:


  • Severe, debilitating tummy aches
  • Explosive diarrhea/gas
  • Severe headaches
  • Complaints of leg/joint pain
  • Constant appearance of a bloated tummy
  • Poor pale color, with dark circles under her eyes


This means she had celiac symptoms long before diabetes entered our world.  I brought up my concerns repeatedly during both sick and well visits, only to be told over and over again that everything was "normal".  In the back of my mind, I cannot help but to wonder if things would be different for Sugar had a doctor taken my concerns seriously, and dug deeper into the symptoms I kept bringing to their attention.

Would a gluten-free diet have stopped the autoimmune cascade that ultimately led to her diabetes diagnosis?

We'll never know.

And I can't dwell on it.

At any rate, in the first five years of her life, we had several trips tot he ER for stomach aches and headaches.  She had cat scans of her head and abdomen several times, and aside from 1 bout of sinusitis, nothing else ever came from them.  Over the years, her symptoms waxed and waned, but they were NEVER (EVER) gone completely.

Testing and Diagnosis:

Sugar was tested for celiac during her hospitalization at the time of her Type 1 Diabetes diagnosis in 2005.  Despite obvious symptoms, her lab test came back negative.  Her annual diabetes lab work includes a celiac screening, because studies suggest that 5-10% of people with Type 1 Diabetes will also be affected by celiac.  She was tested 4 more times over the next 3 years, and each time the labs were negative.

When she was 5 years old in 2008, her bloodwork was positive, and an endoscopic biopsy confirmed the diagnosis.

This article explains celiac testing better than I can, and also provides a brief explanation of why Sugar's lab results may have been been negative for so long:
Young children may not make the some of the “anti-self” antibodies, as it takes a somewhat mature immune system to make them. So in a young child, antiendomysial antibody, or the TTG antibody, can have false negative results.
Because celiac is genetic, and it is estimated that there's a 20% chance of a first degree relative being affected, we decided to have our entire family tested following Sugar's diagnosis.


Everyone had normal lab work...except me.  My labs also showed anemia, presumed to be caused by long-term, untreated celiac disease.  An endoscopic biopsy also confirmed my diagnosis.  It's worth noting that I did not have any symptoms...AT ALL.  I would never have known about my own diagnosis if not for Sugar's.

Follow Up:

One week after eating gluten-free, her symptoms were GONE.  Mind you, these are symptoms she had every day of her life since infancy -- G.O.N.E!!!!  Six months after Sugar's celiac diagnosis, she had a repeat endoscopic biopsy that showed "no evidence of disease".  She continues to have annual celiac screenings to make sure gluten is not inadvertently getting into her system.  To date, her celiac labs have all remained negative.

As for me, it took about 18 months to get my labs back to normal range.

Celiac and Diabetes:

We did not notice any change in Sugar's blood sugars pre-GF and post-GF.  Her A1c one month before her gluten-free transition was 7.3% and 2 months afterwards, it was 7.2%.  Her celiac diagnosis really didn't impact her diabetes management at all.

Interesting Facts:

As taken from the National Foundation For Celiac Awareness:

  • Celiac disease is an autoimmune digestive disease that damages the villi of the small intestine and interferes with absorption of nutrients from food.
  • One in 133 Americans have celiac disease.
  • An estimated 3 million Americans across all races, ages and genders suffer from celiac.
  • 95% of celiacs are undiagnosed or misdiagnosed with other conditions. (Source: Fasano A, et al. Arch Intern Med. 2003;163:286-292.)
  • 6-10 years is the average time a person waits to be correctly diagnosed. (Source: Daniel Leffler, MD, MS, The Celiac Center at Beth Israel Deaconness Medical Center)
  • 5-22% of celiac patients have an immediate family member (1st degree relative) who also has celiac.
  • Celiac disease can lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases.
    Learn more about Related Diseases »



    There are NO pharmaceutical cures for celiac disease.
  • 100% gluten-free diet is the only existing treatment for celiac today. Get gluten-free recipes and tips on where to shop »
  • A positive attitude, 100% of the time, helps celiacs create a gluten-free lifestyle for themselves and their affected family members.
  • The celiac disease diagnosis rate may reach 50-60% by 2019, thanks to efforts to raise public awareness of celiac disease. (Source: Datamonitor Group, 2009)
  • Gluten-free sales reached more than $2.6 billion by the end of 2010 and are now expected to exceed more than $5 billion by 2015. (Source: Packaged Facts, 2011)

    Taken the night before we found out her celiac biopsy was positive.



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3 comments:

  1. Wendy this is great information that you are sharing about the celiac and T1 combo. There aren't too many of us out here (yet). Thanks for sharing the stats, too. I can certainly relate to the symptoms as well as the questions that arose about the diseases. Been there. Hope you guys are doing ok.

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  2. Thank you for this post. As you know I am still very uncertain about all of it in Isaac, despite the negative results from the testing I feel that something is off. I appreciate that knowledge about the false negatives in young children, but what now, wait for him to get older or just assume he is having an allergic rxn to gluten - in your opinion as a mom (not nurse) would you have started her on a gluten free diet sooner had you known or do you feel that without a proper diagnosis you wouldn't have been able to stick to a gluten free diet? Also, very random thought, but did you notice her food cravings would leave out foods with gluten? I'm noticing how much more Isaac likes rice and corn based foods rather than wheat. And on another note, I am currently being treated for severe chronic iron deficient anemia...hmmm...makes me wonder. Anyhow, thanks for putting this post together for all of us inquiring minds :)

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.