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Sisters Diagnosed With Celiac

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A Celiac Test

Two sisters with celiac. One sister’s diagnosis led to the other sister being tested. Madelyn suffered symptoms for four years, however, before an answer was found. 

IMPORTANT!

If, after reading this, you think you or your child may have celiac, please get tested BEFORE removing gluten from your diet. Celiac testing requires a person to be consuming gluten. 

"Allergies"

Madelyn’s symptoms started when she was just eighteen months old. She suffered from chronic nasal congestion, a hoarse voice, and vocal nodules. She also experienced anxiety, trouble sleeping, migraines, and dark circles under her eyes. Her pediatrician consistently blamed her symptoms on allergies.

Case Study

This 2010 article from the National Institute of Health is another case of a child being diagnosed with celiac after experiencing vocal nodules and a hoarse voice. 

Case 2: Making a diagnosis: Lest we forget the family

This article is much longer than the snippets I included below, but I found it a fascinating read.  It offers a concept that I wish all physicians would grasp: The fact that we need to see the BIG picture, not just the isolated symptoms. 

An 11-year-old girl was referred to the paediatric gastroenterology service with symptoms of hoarse voice, central chest discomfort with a frequent acidic taste in the mouth, and mild epigastric pain. An assessment by an otolaryngologist revealed congestion and small nodules on her vocal cords. A diagnosis of gastroesophageal reflux disease (GERD) had been entertained.

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Sir William Osler once said, “If you listen carefully to the patient they will tell you the diagnosis”.

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The patient’s small intestinal histology confirmed celiac disease. Serum tissue transglutaminase antibody was also positive. She was started on a gluten-free diet and her symptoms resolved promptly.

Acid Reflux

After more than four years of symptoms that came under the heading of “allergies,” Madelyn developed acid reflux. She was referred to a specialist.

Upon evaluating her records, the gastroenterologist noticed Madelyn hadn’t grown in two years. No increase in height. No increase in weight. This would have been fine if she was 20. But children are supposed to grow when they are 4, 5, and 6 years old. 

Prior to their appointment, mom had learned a little about celiac disease. She requested an antibody test to be included in the other blood work her new physician ordered. 

An Answer - Finally

Madelyn’s antibody levels suggested celiac. A biopsy was next. And finally, in July 2017, they had an answer. Madelyn was diagnosed with celiac disease at age six, after four years of symptoms.

Sisters With Celiac

Celiac is genetic. And because Madelyn’s new doctor understood this fact, he recommended the rest of the family be tested for celiac as well. 

Grace hadn’t been experiencing health issues like her older sister had. Her antibody levels, however, suggested celiac. And a biopsy confirmed it. So, in November 2017, at the age of 3, Grace was also diagnosed with celiac.

Testing. A simple blood test followed by a biopsy of the small intestine means that Grace didn’t have to develop health complications from un-diagnosed celiac. 

Two sisters with celiac. 

Symptoms not required.

#CeliacTestingNow

Both Sisters Are Doing Great!

So how is Madelyn since going gluten free? Great! 

No more migraines. No more anxiety. No more sleep struggles. Her voice is back. No more nasal congestion. 

Madelyn, however, isn’t growing and gaining weight to the extent mom hoped and expected. I hope she shares some follow-up reports with us down the road. 

Madelyn is happy and she is healthy. And isn’t that all we want for our kids? When she does get accidentally glutened, mom said she reacts with horrible mood swings. This is difficult for Madelyn, and the family. And it is difficult for others to understand. It can be hard to understand how a few crumbs can create strong moods. For some of us (me included) this happens to be a very real reaction.

As for Grace, since she was diagnosed before any complications could occur, she is still doing well.

Both girls now receive annual check-ups and blood tests. So far so good!

As For The Food

Grace’s favorite food is pizza, gluten free, of course. (One of mine too, Grace.) Madelyn loves spaghetti and meatballs. They both enjoy anything mom bakes. 

Family meals are always gluten free, but mom said she allows some non-gluten free items in the house. The girls’ brother does not require gluten free. 

The family enjoys road trips to discover new gluten-free bakeries. 

How Is Mom Doing?

Amy is humbled by those who are willing to learn and willing to help. She is amazed, however, by the fact that so many still don’t know about celiac disease. And she is amazed that so many doctors just don’t think to do a simple celiac blood test.

It is hard for Amy to see her daughters upset when others go to a place they can’t eat. That social component is difficult! And, as she shared, it can also be hard to always have to “pack a million things just to make sure we have food to eat wherever we go.”

Mom also shared that gluten free can be “expensive and exhausting.” She lives with the constant worry, wondering when symptoms might show up from unknown cross contamination. And she wishes there were more “kid friendly” safe options when dining out. 

Thank You

Thank you for sharing your family’s story, Amy. You’re doing a great job!

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Check out the Celiac Stories page for dozens of stories.
Be sure to request celiac tests before removing gluten from your diet.

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