Can African Americans Have Celiac Disease?
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Jan 18 2009

Can African Americans Have Celiac Disease?

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.

Article Written by:

Kyle Eslick is the founder of Gluten Free Media, as well as the creator of the popular Celiac Support Groups page. Connect with us on Facebook, Twitter, and now Google+!

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Comments

  1. Judy Vorfeld says:

    Thanks for linking this excellent site to my blog post on Jaie Benson. I’m learning more each day about Celiac Disease. Best regards!

    • Latasha pearson says:

      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..

      • p says:

        i was gonna say that MANY African americans have european blood hello? So it may not be possible that AFRICANS get celiac but sure nuff black ppl in the US can because grandaddy may not be who you thought grandaddy was..LOL. have a good one.

  2. Dawn L says:

    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!

  3. Learia C says:

    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

  4. Ms. D says:

    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!

  5. Kimberly says:

    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.

  6. 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!

  7. Kate D. says:

    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.

  8. Trudy says:

    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.

  9. Barbara says:

    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.

    • Alexis says:

      Hi

      I was just diagnosed with celiac and I am an African American women also. I have not found much support in my hometown on this and would love get some insight if you have the time.

  10. Lisa says:

    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.

  11. silly Yack says:

    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

  12. Lodie says:

    Wow, I was told the same thing. I have always suffered from food allergies, and from the recommendation of a lady that I worked for she told me to test for Celiac’s Disease. When I asked my doctor to test me, she refused. She then asked me if I was mixed with Caucasian. I told her, No, and that I only had Native American and West-Indian blood mixed. She said that it was “a white person’s disease.” It’s really shameful that our doctors receive medical degrees but aren’t very educated in a sense. I have since began a vegan diet, and have been feeling much better; however, at times when I eat wheat products I feel sick, but it’s not all the time. I believe that I should probably go back and demand a test.

  13. Melissa says:

    I was just tested for celiac disease today and should have my results by Thursday. One the way to the health foods store to pick up some gluten free wheat free products my mother asked “Do African American’s have celiac disease”. So I find Jaie’s article comforting, and it’s nice knowing that I am not alone!

  14. Erica says:

    I arrived at this website after I explained to an an older lady friend that she may have CD too. She told me “my doctor said that CD is a White persons disease–just like Sickle Cell is a black persons disease and that I don’t have CD!” I was feeling duped by my own doctor so I decided to google and found this site.
    I was just recently diagnosed with CD. I believe I’ve suffered for years I’m lactose intolerant and was told I had IBS too. I am African American. I been told that my g .grandfather(s) were American Cherokee Indian on both sides of my family. But you can not look at me and tell. Interestingly enough, I think a lot of people probably have this disease and go undiagnosed. I agree that American doctors are very uninformed. I work with a Chinese doctor and he said that it’s easy to be a doctor in America because all you have to do is say it’s an allergy (in which there is no cure) or a virus (in which there is no cure). In China, they train med students to look for the cause not treat the symptoms. I think American medicine has a long way to go. Thank you for this information. I would very much like information on hair products (since most contain Wheat protein). I have had lots of shedding because of CD. It has slowed down now that I’m selecting GF products. Please advise.

  15. Stacy says:

    My husband suffered with an undiagnosed intestional problem for almost 7 years. Actually it started in his early teens but climax in his early 30s with SEVERE Abdominal pains, nausea, vomiting and diarrhea. The episodes seem to start after holidays or heavy meals. He would have them every 4-6 weeks for almost 2 years. They took out his gallbladder but a week later the same attack. The attacks then spread out every 2-4 months. The attacks last about 24-36 hours. He has been tested for EVERYTHING… from food allergies to Crohns to blood diseases. Well, last year he went to an alternative medicine doctor who quickly said he “couldn’t believe no one figured this out by now”. He tested positive for CD. Every since he took GLUTEN from his diet he has been free of all complications for over a year!!! He is a African American but his mother and father both had “mixed” grandparents. It’s a shame that more doctors aren’t educated to this. Hope this helps someone…

  16. Stacy – I’m glad you husband finally got better, but you are right about docs not knowing much about celiac and even my doctor (GI) told me if I wasn’t Irish or Scottish I didn’t have celiac. I switched docs, had the biopsy and whalah – got my dx. It’s slowly getting better in the U.S., but we have a long way to go, no doubt.

  17. Nicky says:

    We took one of our daughters to see a pediatric g.i. when she was 2 years old, because she had chronic constipation, bowel distention, bloating, tireness, and just felt yucky most days. Her pediatrician dismissed my persistent concerns, sent her home with Miralax, and all but diagnosed me with Munchausen by Proxy. This went on for about a year, until we took her to Hopkins Children’s Center. After celiac bloodwork panels which revealed markers, we allowed her doctor to do an endoscopy and she was diagnosed with severe intestinal damage due to Celiac. We were so relieved that we had a name for what her peditrician repeatedly called “constipation”. Needless to say, we are no longer with him. Celiac may be prevalent in Europens, but that does not mean anyone else can’t get it. How ignorant of some doctors to assume. You can not look at a person and tell everything about them. We saw instant improvement in her health and mood after putting her on a strict gluten-free diet. If your child has these symptoms, get them tested as soon as possible. Untreated, Celiac Disease can lead to cancers, diabetes and other major illnesses.

  18. Michael says:

    My doctor suspected Celiac in me after years of testing for other GI problems, as well as ADD, depression, etc. Funny, she never mentioned anything about race and Celiac; Maybe its because she’s African American. Since I’m bi-racial, I suspect I am susceptable to European maladies as well as those that are prominent within the African American race, My Dr, opted not to give me the test however. Her logic was if I stayed away from gluten products, I should notice a difference. In other words…”listen to my body” save the co-pay. Almost immediately after going gluten free, I began to notice subtle changes. My GI issues were improving, No more bloating…my ability to focus and remember things has gotten better; and I am even feeling more energetic, and in a better mood. I’m only into one month of being gluten-free. It’s not easy because I still crave all those foods that I have been accustomed to during my lifetime. The worst is giving up my favorite vice..Belgian Beer. Oh well, I still have wine and a good Brandy. However, the cravings are diminishing, and I find myself making conscious choices at the grocery store, at restaurants and the occasional cook-out or party. Thanks to all for sharing your stories! story

  19. April says:

    I am so happy to read this post. My dad past away 5 years ago…and celiac disease was the underlying cause. He we undiagnosed for years…going back and forth to doctors. A seizure caused by the diseased landed him in the hospital and he was immediately put in an induced comma. They found that he had a major blockage in his intestine and had to perform surgery. Once the blockage was removed, the hospital started giving him liquid food going straight into his stomach…this liquid was gluten based. Needless to say, his intestines started getting irritated and blocked again. This is what FINALLY prompted them to test him for celiac. Unfortunately, it was a bit too late since two surgeries in a row and the other damages of celiac disease put a toll on his body.

    Doctors need to know that there are very few blacks/african americans who are without european blood. Therefore, if it was the case many years ago that this was only prevalent in europeans, it’s not the case now. I do believe that my dad would have been around longer if the diagnosis was made sooner.

  20. Ann Rice says:

    I searched on African Americans with Celiac to research for a friend with fibromylagia symptoms that have gone on for over 6 years. She is dark skinned, but basic biology tells up about recessive genes.
    Also – someone’s comment about Sickle Cell. I am a VERY pale norwegian/scottish heritage woman, but I still had to get tested for sickle cell for the military. Because you can’t tell just by looking!!

  21. Tee says:

    I, too, am african american. I believe I have celiac diesease as well as my father. I went in to see my dr. and I just remember him looking at me as if I was crazy. My ferritin is very low and I feel terrible. My father has had stomach problems since I could remember. He gets iron shots monthly. When will this madness stop?

  22. Claudia says:

    I really feel for Jaie. Doctors should test for the condition whether or not a person comes from a Northern European background. I was just diagnosed about 7 weeks ago. I had these vague symptoms that were not really noteworthy to my doctor. My ferritin levels were almost non-existent. I started feeling mildly sick from eating wheat products after I went off the Atkins diet. To tell the truth, I felt better than I had ever on the Atkins diet. The only reason I went off of it was because my son thought I was too skinny at 137 lbs. and that he thought Atkins was a quack. I have started to feel better since eliminating gluten foods from my diet. The road to diagnosis for us adults is a long and arduous one. I am inspired by these stories and wish my fellow Celiacs the best of health. ANYONE with vague symptoms regardless of their ethnic background should be tested.

  23. Ang says:

    I am sadden by this article because it points out that many doctors really do not care about their patients. My great-grandfather was Irish; however, I am an African American. I recently decided to removed gluten from my diet and feel tons better but have not discussed the results with my doctor yet. I will take what she says with a grain of salt because I now know I can truly only trust the Lord to look after my well being.

    I hope the Celiac Foundation doesn’t wait until the medical field decide to do “research”, after many have suffered or died, before they inform the African American community that it is possible to be gluten sensitive.

  24. Harvey Brinson says:

    I am a 78-year old African American male who was diagnoses with
    celiac disease four years ago after undergoing tests by a new physician after
    I’d retired and moved to another state. Three physicians whom I had gone to all
    told me, in essence, that ciliac was a “European disease”, and that
    I’d long passed the age for having it. After being told my symptoms, the first
    question my new physician asked was relative to my ancestry. After being told my
    grandfather was Irish, tests were immediately conducted with results showing
    that I had the disease. My advice to any one suspicious of having the disease
    is to insure that your genetic makeup is part of the physician’s initial
    examination to determine your illness. And if the doctor seems not to be
    interested, tell him or her so and then keep looking for one who will listen.

  25. mrstspoons says:

    Hello Mr. Brinson, I hope you are doing better with the diagnosis. I was curious, what were your symptoms at that stage? I am a woman of color and can remember my gastroenterologist looking at me as if I had lost my mind even to suggest celiac. Thank you for reminding the world once again that we can be inflicted with this. Best regards!

  26. mrstspoons says:

    Hello Mr. Brinson, I hope you are doing better with the diagnosis. I was curious, what were your symptoms at that stage? I am a woman of color and can remember my gastroenterologist looking at me as if I had lost my mind even to suggest celiac. Thank you for reminding the world once again that we can be inflicted with this. Best regards!

  27. Vonnie Cookie D says:

    This same thing happened to me my GI doctor did a biopsy and told me he saw small amount of damage from the frequent inflammation. When I asked him could it be something I’m allergic to he said no I’m not of northern European descent. And he puts me on Nexium I went 4 more years becoming sicker and sicker I lost all of my hair.. I couldn’t remember anything.. I think that is TERRIBLE that he judged me on my skin color alone. I will never recommend this doctor. I did a family history and my Grt Grandmother is from the UK and my Grt grand father is from the south and we don’t know what happened down there in 1889 and prior but he doesn’t look BLACK not only that my Grandfather is no other than of Northern European decent he’s white. I look African American BUT THAT IS NOT MY ONLY HERITAGE!!! I tested again last year and guess what POSITIVE I was so thankful… Not even a few weeks after I stop eating grains My hair started growing back, my anxiety went away, I haven’t been sick no post nasal drip… No heartburn or the feeling of Alien resurrection in my abdomen… My memory has improved I’m not tired all of my well most of my medical problems are gone… And I am so thankful I kept pushing and asking. Stupid people make me sick

    • sspiker02 says:

      Hi Vonnie,

      I came across your post by accident—and I felt I should share this with you. I volunteer at a camp that is only for kids with Celiac Disease every summer for the last 3 years. I have seen African American children there every year–and other ethnicities besides northern European. I have preached to our local doctors that they need to understand that this crosses all ethnicities (and body types–you can be thick, thin, short, tall,…you name it). We are a melting pot…so you cannot rule it out based on how someone appears. We do have short kids, kids that are almost 6 feet tall, overweight, underweight, and many ethnicities. You are absolutely RIGHT!! The blood test is cheap enough to run–why not just rule it out.

      • Vonnie Cookie D says:

        It feels good to see this to know that I am not alone. It makes me sad to they’re a lot of children and adults that are sick that don’t know this. I know I try my best to inform my friends and my family too. A lot of them have told the that Dr.’s have never told them. Blood test is always best

  28. Vonnie Cookie D says:

    Also is not the decent WE LOOK BLACK!!! We Black… That’s it they judge us on our appearance only if that doctor would’ve been a doctor he would’ve ran a genetic test to see what decent I really am. You CAN NOT know this from looking at a person. It’s ignorance at its BEST! A lot of African Americans are walking around sick and don’t even know it. God have mercy!

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