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.
im taeler im 17 and i have celiac disease, i've know for about a year, and am researching more about ...
I found Heartland pasta at my local WalMart and bought the fusilli. I cooked it up and combined it ...
Dr. Osborne,
Thank you for sharing that. That makes a lot of sense and explains why I can tolerate it ...
Thanks Shirley! If I go to the event, I hope to enter something with pumpkin it it...just haven't worked out ...
Thanks for linking this excellent site to my blog post on Jaie Benson. I’m learning more each day about Celiac Disease. Best regards!
MY daughter is 8 months old.. We are also African American but not completely. It is my possible believe that genetics can show up anywhere. It hurts me to know that doctors go to school for ,many years studying disorders and are still hypothetically biased when it comes to race.If you trace back history my family’s decent is from other countries. my daughter has had three procedures done all pointing toward celiac disease and the doctors are stil denying the fact this is what she has..I am bothered by this because to me that is just like saying african americans can not have blue eyes lol..I am a perfect example of that been proven wrong as well. I just hope that technology can improve itself eventually.. All of my daughters symptons are pointing toward Celiac. If you are reading my reply and have questions or concerns feel free to contact me..
Thank you for posting this! We are an adoptive family. My husband and I are caucasian, but our children are african-american. I am suspecting that my youngest, at only 2 years old, has celiac. I am going to remember this story, when I take him in and ask for him to be tested. No one should be as constipated as this poor child is!
I’m an African American women, been very ill after radia active iodine treatment for hyperactive thyroid while on active duty, US Army. I beleive the root of my problems is celiec. I heard the same thing about this only being for Europeans. I feel completely normal when not on wheat. Thank for this article. It helps to know I’m not alone.
I go for testing tomarrow, 18 May 2009
Thank you for sharing your story. Would you believe I was told the same thing by my specialist TODAY! I was not aware that this was a disease that was not commonly found in African-Americans so I was in disbelief when the doctor informed me of this fact. I believe the reason why it isn’t found is simply because many doctors refuse to look past our exterior and actually look at us as human beings with a complex genetic makeup. He would have never have known that my great-grandfather was Caucasian by looking at me. However, if he would have seen other members of my family, he would have thought otherwise. When will doctors learn to not look at skin color alone. We are one race…Human! Therefore, we all have the potential to suffer from the same diseases. I too couldn’t believe that my specialist was resistant to move forward in testing me for Celiac Disease. I requested that the genetic test be conducted first and then the biopsy. I have suffered for too long to not try all options. Please continue to pass on the word to all you know that this is something that could be affecting you or someone you know. Upon removing gluten from my diet, I immediately felt better after over five years of suffering. Praise be to God!
I was just diagnosed in April of 2009 with celiac disease. I was diagnosed with about every digestive disorder before a doctor from India looked at my chart one time and said i look as if i have celiac disease. I had been to several doctors with a copay balance of about 3,000 dollars. It has been a life changing experience for me. This time last year a weighed about 340 pounds as of today October 31, 2009 i am about 230 pounds. Celiac is very serious and should be be made knowledgeable to all races.
Kimberly, I am beginning to think we all need to find doctors that were trained in India! My Indian dermatologist, was instrumental in figuring it out I had anemia (my only celiac symptom) and knew all about celiac, once I told him I was being tested for it. Two other docs missed the anemia and they were both trained in the U.S. Very time I meet someone with a story about an incredible doctor, the docs always turn out to be Indian!
Maybe the Indian doctors don’t have the same biases American doctors have. Indian skin colors vary from light to very .dark but I believe they are considered caucasian.
I have a young client who happens to be african-american and quite a bit overweight.(50+lbs) She’s only 13 and that makes me think that perhaps it is more than family eating habits. Perhaps a undiagnosed food allergy. Considering most americans are mixed genetics and the genes do not filter evenly anything is possible.
BTW I have never tested positive on gluten blood antigen tests but through elimination diets it has become obvious I have an allergy to gluten and even “gluten-free” oatmeal. The gluten triggers vertigo (meniere”s disease). Takes about 8 -20 hours for a reaction.
Thank you for this article!!!! I was diagnosed with Celiac Disease a year ago after almost 20 years of suffering. I was told it was IBS, or lactose intolerance or all in my head. Finally I got fed up and researched my symptoms and demanded a test for Celiac. I was told it was a waste of time and money and that It was a European “white” disease. My family has a history of stomach problems, fatigue, eczema, and severe vitamin deficiencies, so I persisted and demanded the test. When my GI specialist called to tell me the test came back positive, he sounded shocked. Now, it also my mission to get that word out that no matter what race you are, you can still have Celiac Disease.
I am SO glad to know that I am not alone. I am an African American who has celiac disease. It took over ten years of misdiagnosis and several hospital visits before I was finally diagnosed.
Amazing! I’ve been suffering from Kidney stones and gastro problem. Dr. Pothan (Indian doctor) was finally able to figureit out. I can’t tell you how relieved and stressed I’ve been. I couldn’t get my weight down despite working out vigorously. I’m completely worn out by the entire events over the past 7 months, but thank God I’ve actually found someone and a diagnosis that can be treated.
Im about as dark as Michael Jordan, but my mothers grandmother is from Dublin.
So dispite everyone down from her having a black child, I somehow as a black male, inherited the Gene.
I was misdiagnosed because of race as well.
I would obviously think it would be more common in lighter skinn black americans because of closer mixed heritage, but i am living proof that it is possible… though not probable.
As we all inter mingle and interbreed more, who knows … next we will have white people with Sickle cell