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Self Advocacy: Testing for Celiac

Self Advocacy Leads to Answers

Below is another personal story of celiac diagnosis. I wish I could say that her doctor suggested celiac tests. I wish I could say that it is rare that doctors overlook the possibility. But the fact is, too many people still have to wait several years before being tested. And too many are tested only through self advocacy. 

When a Rash is the Only Symptom

Brooke, age 36, started experiencing an itchy rash on her elbows, neck, and jawline. This continued for a dozen years with no answers from the many dermatologists she sought help from. Some suggested that it was eczema. Some said it wasn’t. No one, however, could give her an answer.

When a Patient Has To Request the Tests

Twelve years. Several dermatologists. No answers. Brooke finally requested a biopsy. “The pathologist,” she said, “suggested Dermatitis Herpetiformis.” Her dermatologist and primary care physician, however, thought it unlikely that she had celiac since she had no symptoms. hmmmm…. According to an article at Beyond Celiac:

Only about 20 percent of people with DH have intestinal symptoms of celiac disease, however, biopsies show that 80 percent have some degree of damage to the small intestine, especially if a high gluten diet is maintained.

Continued self advocacy. Brooke then requested further celiac testing. The blood test came back with elevated antibodies. The numbers were “incredibly high,” she said. The biopsy that followed confirmed celiac disease. 

What if she never requested the tests? How much longer would she have had to live with undiagnosed celiac? How much damage would have been done to her body before she would be diagnosed if she waited for doctors to find an answer?

And now, because Brooke advocated for herself, not only was she diagnosed with celiac, but her mom was as well. The rest of her family, now knowing celiac is a genetic disease, got tested.

A test. A relatively simple test. How many people are living with symptoms of undiagnosed celiac, yet continue going to doctor after doctor without answers? 


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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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