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Celiac in the Family: Part Two

Sisters Diagnosed 1,000 Miles Apart (in the Same Week!)

I shared Jennie’s story a couple weeks ago. Besides Jennie, her young daughter was also diagnosed with celiac. This post is about Jennie’s sister, Jessie. Celiac in the family was clearly increasing.

Here’s the super cool thing . . . both sisters were diagnosed in the same week.

But that’s not the coolest part. They were living 1,000 miles apart. Both had different symptoms. And neither knew of the others’ journey.

Jennie and Jessie were diagnosed 3 years ago, in June 2016.

A Stomach Bug That Became So Much More

Jessie caught a stomach bug from one of her kids in October 2015. At age 35, she ended up sicker than she’d been her entire adult life. She was so sick that she spent two days in bed. 

Two weeks after recovering from that bug, severe diarrhea kicked in. Of course, she didn’t know what she was in for it at the time, but this became the start of several bouts of severe diarrhea that ended up lasting for several months. Each bout would start suddenly, last a few days, then stop for a couple weeks. 

After several cycles, she decided to go to the clinic. Her doctor gave her an antibiotic and sent her on her way. She wasn’t sure if the relief she experienced was due to the antibiotics or because she was at that stage of the episode when she naturally experienced relief.

By her third dose of antibiotic, she started experiencing another issue: vomiting. “Once the vomiting started, I knew something was truly wrong,” she said.

Things Fell Into Place

Jessie lives in a rural area. Medical options is limited to a clinic and one physician. She had been assigned to the physician’s PA. The PA had a med student working under him. This med student happened to have studied celiac while in med school. 

Jessie was tested for parasites, and was waiting on results. The med student following her case was going to order celiac tests next. In the meantime, Jessie received a call from her sister, Jennie, with her announcement that she had just been diagnosed with celiac disease. 

“Once he heard my sister’s diagnosis, we were both 95% sure that was my issue as well.”

Positive Blood Test ~ Positive Gluten Free Results

Jessie’s blood test was positive. She didn’t have health insurance, though, so chose not to do the biopsy. And because of the lack of health insurance, she didn’t return for follow-up visits. Removing gluten, however, meant immediate relief to her gastrointestinal distress. “I have healthy digestion! I am not sick anymore!”

Testing Continues

Although there are several in the family with diagnosed celiac, none of Jessie’s children have been diagnosed, thankfully. Three have been tested. All were negative. Should symptoms develop, however, they surely won’t have to wait long for re-testing, as celiac is clearly in the family and is on mom’s radar.

Celiac Since Childhood?

Looking back, Jessie wonders if the fact that she was anemic as a child was due to undiagnosed celiac. And she wonders if there were other symptoms that were simply overlooked. It is discouraging for her to know that she had to get violently ill before her symptoms were taken seriously. “I’m bummed that I took so many unnecessary antibiotics,” she also shared.

Her sickest weeks were around the time that her daughter turned two, causing her to miss that special birthday. “I hate that as a mom, my health was at the bottom of a long list of things.”

Being Gluten Free (and Educating Along the Way)

While she finds eating out to be a “minefield,” Jessie is happy when she finds places with safe gluten-free French fries. It can be those simple things that give us cause to celebrate.

She doesn’t hesitate to use opportunities to educate when dining out. While she appreciates the expanded gluten-free awareness due to those who “choose” to be gluten free, she is vocal about the fact that many people are gluten free because they have to be. “I’m a one-woman PSA campaign when I go out to eat,” she shared.

While she doesn’t dine out often, eating at home isn’t Jessie’s biggest struggle. “Cooking GF is no problem for me. I love to cook. It brings me joy to cook. That has not changed since GF.” The more difficult challenge, as she said, is that gluten free can be “emotionally tough.”  

Having four kids, and considering the expense, Jessie has chosen not to make her home completely gluten free. Like Jennie, she keeps only gluten-free flour in the house. She keeps a separate shelf for her baking items and special gluten-free foods (to keep them safe, and to prevent others from eating them).

She also shared that she doesn’t use the family toaster. She keeps two spoon rests and uses a lot of knives in order to prevent the butter, peanut butter, and other condiments from cross-contamination.

Thank you

Thank you Jessie and Jennie for sharing your stories. Thank you for reminding us of how common celiac in the family can be.

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This Post Has 2 Comments

  1. Jennie

    You should come.on our family vacations! We have 4 GF people, 1 vegetarian, and one of those GF has a few other allergies! But we make it work and no one suffered any CC!

    1. Debbie Simpson

      That would be so awesome! Having so many who need to be (and who understand) gluten free must REALLY help with the food issue! Love it!

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