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Potty Accidents -- Not a Lack of Potty Training
Rebecca was diagnosed with celiac at age 4, two years after symptoms began. Mom knew something was wrong when her toddler was 2-2.5 years old and started having several potty accidents a day. “Doctors kept telling us she just wasn’t potty trained.” But Mary knew it was more than that.
Tests, Tests, and More Stress
According to Mary, her daughter was also highly emotional. As in Heidi’s story, it was more than “terrible two’s.”
“The afternoons would be filled with crying and screaming.”
Rebecca also suffered from chronic constipation, stomachaches, and mysterious leg pains.
“We looked for everything that could possibly be wrong,” Mary said. “The tummy aches landed her in the hospital with suspected appendicitis (it wasn’t).”
Rebecca was tested for diabetes.
She was put under anesthesia for an MRI, seeking answers for her leg pains. They wanted to be sure she didn’t have a tethered spinal cord.
This isn’t just a list of tests that were conducted. The worry that a parent goes through with every step of the way is brutally stressful. It’s heartbreaking for a parent to feel so helpless, having to wonder, What’s wrong?
“I knew something was wrong with my child but didn’t think the doctors were listening to me,” mom shared.
"Let's Try One More Test"
Does that sound familiar? Why is celiac often the last resort test instead of the first? Celiac is far from rare and often a more common disease than other tests that are run — but hey, we’ll just put that one off. Let’s make sure its not something that affects 1:10,000 kids before testing for one of the most common genetic autoimmune diseases . My apologies, a little sarcasm there.
“We never suspected gluten or anything even remotely like celiac disease. We had run so many tests on all her individual symptoms, that when they wanted to run one more blood test ‘just to rule something out’ I said, ‘ok,’ just to get it over with.”
“One final test.”
Dear Doctors: 1:100 of your patients have celiac disease (at least). Most still don’t know it. Please, please, please make celiac the first test, not the last resort test.
Positive Blood Test / Negative Biopsy / Positive Diet Results
Rebecca’s blood tests suggested celiac. The biopsy was scheduled for the following week. “I assumed the biopsy would come back positive,” said mom. “So I took the week to make our entire house gluten free.”
Mary cleaned and scrubbed the entire house. “I got rid of dishes and things that could not be made 100% gluten free, basically restarted our house from scratch,” she shared.
Rebecca continued eating gluten daily (as this is required until testing is completed). No gluten was allowed in the house, however, so she ate it outside.
The family was surprised with the result of the biopsy. No damage. “The doctor was confident she had celiac, but said that we had caught it early enough that perhaps damage had not yet occurred,” Mary said.
The doctor wanted her to continue eating gluten daily so they could re-biopsy a few months later.
“With our house now being completely GF after so much work, I wasn’t going back!” Instead of recontaminating the kitchen, they had Rebecca eat her nongluten free food outside, washing her hands before coming back in the house.
It didn’t take long for them to see how miserable Rebecca was after eating a gluten-containing snack. “She would be fine all day and then BAM she’d be crying, tantruming, stomachaches, leg pains, pee accidents, MISERABLE.”
When it became obvious that gluten was behind her health issues, Mom made an appointment with a new physician for a second opinion. This new gastroenterologist told mom that the blood work results and the results with the attempts with a gluten trial was enough.
“He didn’t see any point in damaging her intestines to prove celiac through biopsy. So we agreed and stopped the trial.”
No More Gluten Means:
Rebecca rarely has daytime potty accidents. No more leg pain. Her sleep is improved. No more constipation. And her emotions are much more appropriate, with greatly decreased crying spells and tantrums. Elevated emotions is now a sign to mom that her daughter has been exposed to gluten.
She has also grown quite a bit since being gluten free.
“She’s healthier and happier and growing better.”
She had no energy prior to her diagnosis and removal of gluten. She constantly complained of being tired. Now she has the appropriate energy of a six-year-old, enjoying rock climbing and bike riding.
Celiac or Non-Celiac Gluten Sensitivity: It's all the same to mom
“Her current gastroenterologist says she is likely just NCGS but there’s no way to differentiate. She’s also so extremely sensitive to gluten that it doesn’t matter really. We also have other autoimmune diseases in the family so I suspect it is celiac and treat it the same.”
Mary shared that they maintain a 100% gluten free home. “All food, lotions, makeup, shampoos, crayons, art supplies,” are gluten free. Rebecca is very sensitive to cross contamination. “We found, for our own sanity, that we needed a 100% GF kitchen.” Mom decided that having separate utensils was too stressful. Plus, she didn’t want Rebecca to have to watch others in the home eat things she couldn’t have.
Mom has a good handle on gluten free, but says that it “still takes ongoing work.” She wishes there was a cure so her daughter could “eat however and wherever and whatever she chooses.”
Mary shared that they never go out to eat. She feels it is too much of a risk. She finds it easier to just cook at home. “Going to other kids’ birthday parties is a nightmare,” mom shared. Even though they always bring Rebecca’s own food, mom said that she seems to always get glutened from contamination.
A Mother's Perseverence
Mary shared: “Getting this diagnosis took a lot of pushing on my part (the mom). I did research, I took her repeatedly to the pediatrician (who missed this diagnosis completely), I pushed to see specialists and have tests run. I changed doctors and hospitals when I felt the care was dismissive. I was told time and time again there wasn’t anything wrong with my child. No one took any part of it seriously until she was over four and still having pee accidents.”
A celiac test. A gluten free life. Rebecca now has her childhood to live without the symptoms on undiagnosed celiac getting in the way.