I’ve attended more than my fair share of celiac-related events over the past five years and I have to say, I haven’t really seen any African Americans at these events. This has always made me wonder if African Americans can have celiac disease?
It turns out the answer is yes. In fact, I actually just finished reading the wonderful story of Jaie Benson, a woman here in the United States who recently was diagnosed with celiac disease, and wanted to share her story. What is most interesting about her story, though, is not the celiac diagnosis, but the original misdiagnosis. Despite her symptoms all pointing towards celiac disease as the correct diagnosis, Jaie was originally told by her doctor that she couldn’t have celiac because she was African American!
Here is an except from Jaie’s story:
For months my doctor could not find anything wrong with me. In late November, I went to the emergency room because I could no longer take the excruciating pain in my brain. One of the young interns came in and after a brief chat he said – from the symptoms you describe – it sounds like Celiac. Then he said – but maybe not – since you are African American. The cat scan revealed a small abnormality in my brain (the doctor said possible aneurysm – which I refused to buy into) and they sent me home making me promise to see my doctor right away to get a referral to a neurologist along with some medications to kill the headache for the moment.
I went to my doctor later that week with all of the info I could print off and asked him to test me for Celiac. He looked at me and said…NO. I asked, “why”? His response, you don’t have it – you are African American, and it is only prevalent in people with European descent. I said but I have every symptom on these pages and I want the test. He said…NO, it will be a waste of time and money.
Jaie’s persistence eventually paid off and test results eventually revealed that she did in fact have celiac disease, despite being African American. In hindsight, Jaie notes that her mother’s side of the family has always suffered from stomach problems and now she believes she knows why. Jaie has resolved to do her part to improve Celiac awareness in 2009, especially among other ethnicities which aren’t of European descent.