I’d like to introduce you to Wendy of Candy Hearts.
Tell me something about your child.
Sugar is a joy to everyone she meets. She has a heart of gold, an infectious smile, and a sense of compassion that sets her apart. She is a natural leader among her peers, and a wonderful role model to her younger sisters. I am truly blessed to call her my daughter.
How old was your child when diagnosed?
Sugar was diagnosed at 24 months, just three weeks after her 2nd birthday.
How was your child diagnosed?
She had intermittent symptoms for several weeks prior to her diagnosis. She nursed until right before her second birthday. Shortly after weaning, she began saturating through her diapers, drinking non-stop, and seemed to be hungry all the time. As a Registered Nurse, I was very suspicious of her symptoms, but managed to explain them all away and put my mind at ease. At her two year well visit, the doctor validated my excuses and didn’t seem concerned about Type 1 diabetes.
She went into DKA, and nearly died, three weeks later.
(You can read her diagnosis story on Candy Hearts.)
How was Sugar diagnosed with Celiac? I’m sure Celiac on it’s own is difficult to deal with, but what are the challenges when it’s compounded with diabetes?
Sugar began having random distressing GI symptoms from the time she was old enough to pick up finger foods, such as cereal. I was always told that her diarrhea was secondary to the high amount of breastmilk in her diet. She nursed for nearly two years, and began eating solids at 6 months of age.
After being stabilized and discharged to the regular floor from the PICU, I spoke with the endocrinologist about her frequent complaints of tummy aches and random diarrhea. She was tested for celiac during her hospitalization. It was negative.
Her symptoms persisted for the next several years. In addition to the unexplained diarrhea, her belly pain worsened, she began having severe headaches, and frequently complained of leg pain. She was screened for celiac three more times between 2005 and 2007, and the test came back negative each time.
In November 2008, she was due for her annual diabetes labwork. This time the celiac screening was glaringly positive. She had an endoscopy in December 2008, and the diagnosis was confirmed via small intestine biopsy.
On a side note, I was also diagnosed with Celiac in September, 2009. I did NOT have any symptoms and the diagnosis was only found because I requested a screening during a routine physical. My diagnosis was confirmed via biopsy after the labwork was positive. The pathology report stated I had “near 100% villous atrophy”. I have Latent Celiac Disease, which basically means that I do not have outward symptoms when gluten is ingested. Both Sugar and I must adhere to a strict gluten free diet for life.
The most difficult part of managing celiac is the concern over hidden gluten in a product’s ingredients and the risk of manufacturing contamination. Sugar’s numbers haven’t really been impacted by the change in her diet. Her A1c was in the low 7’s for a year prior to her celiac diagnosis and it has remained in that general vicinity since transitioning to a gluten free diet nearly two years ago.
It is important to understand that celiac disease is NOT an allergy. It is an autoimmune digestive disorder that can only be treated by eliminating gluten from the diet. Untreated celiac can lead to a host of complications, such as severe anemia, osteoporosis, infertility, and GI cancer. When those complications are combined with the complication risks associated with type 1 diabetes, it paints a daunting picture. The good news is that strict adherence to a gluten free diet for life combined with vigilant daily blood sugar management will greatly reduce the chances of developing complications from either.
How has your child’s life changed since diagnosis?
Sugar has a natural ability to look past people’s imperfections and shortcomings to embrace their heart unconditionally. She also deals with a greater level of responsibility than other children her age.
She had a much harder time adjusting to her celiac diagnosis almost two years ago. Perhaps that is because, being diagnosed at only 24 months of age, diabetes is really all she’s ever known. Celiac, on the other hand, entered the picture when she was five.
How has your family’s life changed since diagnosis?
I was 20 weeks pregnant with our second baby when Sugar was diagnosed. Our youngest daughters do no know a life without Type 1 diabetes.
Our marriage, however, has developed a stronger spiritual foundation. Prior to Sugar’s diagnosis we were wandering through the maze of life with faith that was easily tested by unsettled questions. After witnessing her life saved through the miracle of prayer and the grace of God, we became fully committed followers of Jesus Christ.
How has connecting online helped you cope with diabetes? What online resources do you use?
Even though we’ve been dealing with diabetes for a little over five years, I didn’t really begin to connect online until about three years ago.
At first I connected online via various Yahoo Groups. Around the same time, I discovered an entire community of families in our area who were also dealing with diabetes. Together, we have worked to create one of the largest Type 1 diabetes support networks in the state of Arizona.
Two years ago, I started my blog. Through this venue, I have been blessed to meet a number of amazing mothers who are walking the same road. I’ve connected with several of these women on a very deep level and consider them to be like family.
I have also met countless other parents via Facebook. Social media has been a huge reason I was able to connect and begin to deal with some of the difficult emotions I had kept hidden for a couple years.
How do you manage diabetes?
Sugar wears the Animas Ping insulin pump.
What would you tell parents of a newly diagnosed child?
I would remind them that their child will still be able to lick the beaters while baking cookies together in the kitchen.
For some reason, the idea that my daughter and I would never share this special memory really bothered me right after learning of her diagnosis.
I’m not sure if I was afraid because I knew she was fighting for her life….or because I didn’t know how to enjoy this simple pleasure with diabetes.
What do you know now that you wish you had known at diagnosis?
I wish I knew that highs happen. And lows. And the fact that none of it makes sense is normal.
Do you do any fundraising or advocacy?
My family walks in the JDRF Walk To Cure Diabetes every year, and I am a trained JDRF mentor. As mentioned before, our family was instrumental in building a local support network, which now includes about 75 to 100 families.
Additionally, Sugar and I have been to the state level of government with the ADA to advocate for the role of the school nurse in Arizona schools.
Anything else you’d like to add?
There are so many awesome mothers who are raising children with diabetes. Each is unique in her own way, and all of them come together to create a diverse atmosphere of support. Our diversity AND unity combined is what sets us apart.
If you are dealing with a new diagnosis, or coping with difficult emotions from a veteran diagnosis, I would encourage you to seek out like minded mothers across the Diabetes Online Community (DOC). Chances are really good that you will find a story that clicks well with you!
D-Moms, everywhere, remember you are not alone.
Meet other D-Moms and D-Dads on Mondays.