<<Disclaimer: Verify this information before applying it to your situation.>>
I would like to thank all of your for your responses. I will break these up
because there were so many. The general consensus is that America is a
"Melting Pot" and no one is pure. Please read the many informative
responses. As for my friend she has an appt. with the doctor with a packet
to present to him. Thanks Again, Kathy
-------------------------
It used to be thought that Celiac Disease was only a Northern European
malady. Then they started looking for it elsewhere in Europe and, lo and
behold, they found just about as much of it in the rest of Europe as in
Scandinavia! I haven't heard of any studies of CD incidence in Africa,
probably because wheat is not a staple of the diet there. As for
African-Americans, keep in mind that there are virtually no pureblooded
Africans in this population. On the plantations it was routine for Massa to
exert his authority over the slave girls by fathering their children. And
Massa was usually a WASP.
-------------------------------------------
I do tissue typing and it is possible. Many African Americans have what are
considered Caucasian HLA types, usually half and half, but some based on
their HLA type look "Caucasian". It just depends on what HLA antigens they
inherited.
-------------------------------------------
Last year I had occasion to speak with Dr. Peter Green of Columbia Pres
Hospital in NY, a leading authority on Celiac with a patient population
largely Celiac. When talking about ethnic Celiac population, he mentioned
that at that time, he had two African American patients out of about 300
Celiacs. That shows it is absolutely possible. It may be that somewhere in
their genetic line, there might have been a relative or ancestor from a
different ethnic group, or maybe not. Who knows, but obviously African
Americans CAN have Celiac disease
-------------------------------------------
I posed a similar question to Dr. Gray at a conference at Stanford last
year. He told us it is unusual for African Americans but not unheard of. I
heard that a small # of Native Americans have CD. Stanford Univ. is just
south of San Francisco, but he has never seen an Asian with CD. Yet my son
Peter is Korean and tested positive for CD using a blood test!
-------------------------------------------
I'm the state rep for CSA in Alaska. I have met one black celiac - and also
one Eskimo celiac, which was a real surprise. Your friend's doc should know
that few blacks have no white blood. In the case of the Eskimo celiac, she
told me that there were 'rumors' in her family of a white ancestor.
-------------------------------------------
A few brief comments. While I cannot offer you proof that AA's can have
Celiac:
1. Most AA's have some Caucasian blood somewhere in their past
2. AA's often don't receive the same level of health care as Caucasians
3. AA's are misdiagnosed for a myriad of ailments as a result of culture,
misinformation and stereotyping
-------------------------------------------
Yes, it is possible for an African American to have CD. As a physician, I
know of an African American man with CD. Bare in mind that most African
Americans are not "pure" African; they generally have some European
ancestors. As a consequence, they can carry the genes for CD, which are most
often found in people of European extraction. To refuse to do test a person
for a disease because he or she black is racism. He should seek a more
enlightened doctor.
-------------------------------------------
There is no evidence to support the idea that African Americans do not get
D. In fact, I know a family in Tacoma that the father and 2 children all
have CD. It is suspected that African Americans, Spanish and Asians have a
lower incidence of CD, but it does not preclude them from having it. (Let's
ace it, our gene pool is not pure).
-------------------------------------------
Approximately 80% of African Americans are part Caucasian. That means that
many African Americans could have the genetic predisposition for celiac
sprue. Also, it is rare for Asians to have it, yet here in the Seattle area,
is a Korean boy with celiac sprue.
-------------------------------------------
My sister and I attended the CSA/USA annual conference held in Buffalo,
N.Y., in 1995(?) and a lovely African-American was elected to some such
national post. So there, too! And don't tell me that the slaves we brought
to this country who were "used" by plantation owners, etc. who were white,
didn't have offspring carrying the gene for Celiac Sprue. Of course there
are African Americans with CD. What a stupid doctor - among many.
-------------------------------------------
HELLO, AND THANK God for your letter. I am a 56-year-old African American
with celiac disease, because of being misdiagnosed and being persistent Dr
Amorn, Youngstown, Ohio, tested me for months and finally after almost
killing me tested me for celiac disease. That was 12 years ago. I am African
American I have been gluten free and lactose free since then. I give
lectures and bread making demonstration. Tell your doctor not to be
discourage most doctor has not even heard of celiac yet alone a black
celiac. I am known throughout because I attend a lot of lectures and also I
am the only black there. I have Irish people on my dad side of the family
-------------------------------------------
I live in the Seattle area - tell your friend to change doctors. See Dr.
Mease at Minor & James or Dr. Marcidi or Dr. Slosberg both at Western
Washington GI Department. I wouldn't stand for a doctor who said it was
impossible for an African American to get celiac.
-------------------------------------------
My boyfriend, who is African-American, was recently diagnosed via a biopsy
and blood test. After two months of being on the GF diet, his health has
drastically improved. Clearly, he does have Celiac. I have noticed that
sources state that the disease predominantly affects those of European
descent, but I have never seen anything that says it is exclusive to those
of that background.
-------------------------------------------
At the GIG national conference last week, one of the physicians reported he
had diagnosed two African-Americans as having celiac sprue. Although sprue
may not be found in native Africans, I doubt that it has been studied as
thoroughly as Europe. Also, some African-Americans have both European and
African ancestors.
-------------------------------------------
At the GIG national conference last week, one of the physicians reported he
had diagnosed two African-Americans as having celiac sprue. Although sprue
may not be found in native Africans, I doubt that it has been studied as
thoroughly as Europe. Also, some African-Americans have both European and
African ancestors.
-------------------------------------------
my pharmacist is from the Punjab and is a biopsy diagnosed celiac. Why on
earth do doctors think "rare" diseases are "non-existent" diseases!!!!
Especially when the state (and my own Gastroenterologist indicates) that
celiac is a l:200 persons disorder!
-------------------------------------------
It's doubtful that anyone living in the US for a period of generations is
*all* Black. Just as most of us may have some mixed bloodlines in us
(perhaps without knowing it), the likelihood is high that there is some
European or other ethnic group in your friend's genetics. Also, as I just
discovered at the GIG annual conference this past weekend, there have not
been any studies on blacks or Asians for celiac. They may have the
propensity, but it hasn't been proven! She might want to see Dick Driscoll
at Minor & James Medical. He's my gastro, has spoke before GIG and is well
aware of celiac.
-------------------------------------------
I do recall reading an article in the magazine Sully's Living Without that
focused on an African girl who was diagnosed with celiac when she came to
the United States. I seem to recall that she began having symptoms when she
came to US. She did not have wheat or gluten grains in her diet in Africa,
but became ill when she came to the US. Perhaps if you contact the publisher
of Sully's Living Without they may be willing to send you a reprint of the
article. The contact information I have from an old issue is below:
Sully's Living Without, Inc.
1202 N 75th Street Suite 294
Downers Grove, IL 60516
Phone: 630-415-3378
Email: [log in to unmask]
-------------------------------------------
I am not a scientist, but I find it bizarre that a doctor would suggest that
African Americans couldn't have celiac disease. It is my understanding that
there is a lot of mixed blood in this country - my ancestors came from
England in the 1600's, and I would have a hard time saying I was pure
English. Perhaps it is found more often in certain racial groups, but gene
mixing has been going on quite some time. (And then there were those who
thought you had to be gay to get Aids!) Wish there were more doctors who
looked for every possibility when diagnosing illness.
-------------------------------------------
It's not true that Africans cannot have celiac disease. There was an article
in Sully's Living Without, Spring 1999, page 12, titled "Coming to America -
Living Without Gluten", by Mary Jane Myers, which told the story of Kidist
Getachew from Addis Ababa, Ethiopia, who came to the US at 17 as a student.
She became ill, got steadily worse. It took 6 years, but she was finally
diagnosed with celiac disease based on an endoscopy. Kidist had never been
exposed to wheat until she came to this country (bread was made of Teff at
home).At the time of the article, she had been in the US for almost 10 years
and had recovered her health on the GF diet.
-------------------------------------------
My brother, a DNA expert, would point out that since nearly all Americans
are of mixed ancestry, certainly including African Americans, it does not
make sense to say that exclude the possibility of someone's having a gene
usually associated with an ethnic group whose superficial physical
characteristics--skin color and mouth shape, say--are different. And that's
only the beginning of the argument....point is, there is no such thing as a
definite genetic boundary between one so-called racial group and another.
The percentages may be against African Americans having Celiac, but
percentages tell you nothing about an individual case.
-------------------------------------------
There are documented cases of Celiac in African Americans, although they are
few and far between. I would contact Dr. Fasano, as I know that he knows of
at least one! www.celiaccenter.org
-------------------------------------------
At the GIG conference this weekend, Dr. Cynthia Rudert (sp?) a
Gastroenterologist in Atlanta was telling us that she treats an
African-American female celiac. It isn't unheard of.
-------------------------------------------
My daughter is biracial (Caucasian and African American) and very definitely
has celiac disease. In my research and discussions with her physicians,
there is less prevalence of celiac in African ethnicities. But it was my
understanding from everything that there is no proof that one race has less
prevalence it is thought to be based on the fact that there is no research
done in those areas. In the US the number is thought to be lower because of
less access to quality health care for minorities and thus a lower rate of
diagnosis. I think your friend has as much chance as you and I for the
disease.
-------------------------------------------
I believe I quote Steven J. Gould and others accurately when I say that 90%
of human variation can be found in any 10% of the population. In other
words, just because there is a higher percentage of celiacs among those of
Northern European descent doesn't mean it can't be found in other ethnic
groups - besides, we've all been making babies across racial/ethnic lines
for centuries! If the symptoms fit, do the test.
-------------------------------------------
Not impossible, but certainly much less common.
I wouldn't call his behavior "racial profiling." That would imply some
prejudice on his part and I hardly think that is the case here. Some races
definitely are more predisposed to certain diseases and such just from our
genetics. For instance, many American Indians are genetically predisposed to
diabetes--I heard that in one reservation population as many as 60% are
diabetic. He shouldn't say "impossible", but statistically speaking, it is
much more rare for an African American to have celiac.
-------------------------------------------
I know of no research that would say that an African American couldn't get
CD. First, Race is really a social construction and has very little to do
with biology. Second, given the history of Africans in America, it is highly
likely that your friend somewhere in her ancestral line has white family
members (she probably wouldn't know this and I am talking about any number
of years ago). So the possibility of exposure to the genes which cause cd
(being more prevalent in European lineage) is much greater than we might
think. Also there is research out there that shows that cd may not be as
rare in non-whites as originally thought. This was quoted by Dr. Kenneth
Fine (www.finerhealth.com) at our Philly support group meeting two months
ago. I am sorry but I did not record the citations. However, if you do a
search on a medical database I am sure these articles will turn up. The
thinking on this is that people from different regions of the world, such as
Asia and Latin America, tend to use less wheat, etc. in their diets and so
the disease may progress slower (e.g. people suffer much less severe
symptoms) and therefore goes undiagnosed or they may not develop the disease
at all even though they have the gene that can cause it. Therefore, it is
very important that we continue to monitor Asian, African and Latin American
immigrant groups to see if they are experiencing such symptoms and to get
testing to those groups. (Since they may be eating more wheat-based products
here in the US).
-------------------------------------------
That is annoying, as well as racist, but it really is STUPID. First, is your
friend 100% African in her genealogy? Many African Americans have Caucasian
blood from somewhere in their family history, maybe even back to the African
shores, who knows? It only takes one set of genes passed down the line! I
met a wonderful woman about 8 months ago who's 14 year old daughter is a
diagnosed celiac (sensitive one, too). They are African American. I did not
ask about her heritage. And where are studies proving that celiac disease is
a Caucasian disease? Is wheat a staple in African countries, and was it for
the 10000 years they estimate the Middle Eastern people ate it? The thought
is that we 'euro types' only started eating wheat 2000 years ago, not enough
time to naturally weed out the celiac sensitive among us. I would love to
hear from a world history buff on this. What about Asians? All those pot
stickers, pork buns and wheat-filled soy sauce, are they a relatively new
addition to a rice-based diet, from wheat-flour and seed brought by European
traders? Anyone know out there? There is so much we don't know, that doctor
is an idiot to take such a stand.
-------------------------------------------
Although I am Norwegian American, I too am interested in this question,
because I have seen several of my African American friends with CD type
symptoms. I posed the question to the list a few years ago and received
responses from other ethnic groups. Some in the Middle East, saying that
they had a condition that caused "summer diarrhea" during the only time of
the year that wheat was used. That the incidence of CD in Colombia (I
believe, it has been a long time, but it was a South American Country) was
1/300 in about 1998. Additionally there were several people who had black
members in their support groups. This last week there was a post about the
fact that those in Argentina already had gluten symbols on their food
packaging. This indicates that there was a need for this, and it appears
that they must have a significant gluten intolerant population. I asked the
woman who did the post if the population there were more native American or
of Spanish which would be European. This indicates that it would be more
universal that the limited criteria that the medical people realize. It was
thought that those with CD had diarrhea and wasting and were underweight,
therefore those of us who are overweight and have constipation were never co
nsidered to have CD. They would not even test those that did not have
diarrhea. I believe it is the same with ethnic groups. It was discovered in
Northern Europe, they learned more about it, so they thought it was only in
Northern European ethnicity. I have now read that in Hungry that the ratio
was 1.85 in school children tested indicating the prevalence is even higher
in Eastern Europe. Perhaps if the condition is not know to a culture, they
don't test, and so how could they know that it was a problem? I think it is
important to all of us to get to the heart of how prevalent it is in the
world. The more it is diagnosed the more research, labeling, product
availability, and other advantages for all of us, although I feel that it is
important if it can save just one person the agony that can be avoided. I
wondered, in testing, if Dr. Fasano tested only Europeans, or if he did
blood tests on all ethnic types.
-------------------------------------------
Two of my sons who are bi-racial shows every sign of being a Celiac. Since
going Gluten Free one no longer suffers from depression, stomach aches,
constipation, no missed nights of work.
The other was hospitalized about a year ago for severe chest pains.Turnsout
he has severe cases of acid reflux that causes him extreme chest pain. When
he stays on his gluten free diet he no longer has those symptoms. Please
advise the doctor that most afro-Americans living in the states are often
from a mixture of nationalities.
So many people have been excluded from being tested because of their race we
do not really have an accurate reading on who is and who is not Celiac.
Many of us overweight people are discriminated against because of our weight
when it comes to being tested. Yet latest research clearly shows that more
people who are overweight have Celiac then the previous idea of only super
thin people having it exclusively. No one should be excluded from being
tested regardless of size or race until the medical profession is 100%
knowledgeable. Please tell me why Afro Americans would not suffer from
Celiac Disease. They have the same digestive system as any white person.
They also have a higher instance of death from colon cancers than white
people.
-------------------------------------------
DR Allesio Fasano pointed out diagnosis rates throughout the world in his
lecture to our support group earlier this year, and the rate of Celiac
disease differed only related to rate and skill of testing; if nobody tests
for it, of course the rate will be lower. The map he projected, also showing
the African continent, showed high percentages of Celiac Disease in
countries directly bordering countries with virtually none, an obvious
diagnosing and reporting error rather than a true measure of actual
occurrence rates. Try his site @ www.celiaccenter.org; his E-mail address is
on the site. I've heard he's wonderful about answering queries.
2) Your friend is "African-American", so she is most likely a proud mishmash
of genetic material from many different ethnic backgrounds just like the
rest of us. Tell her doctor that her intestinal genes are..... whatever.
Spanish? English? Unless she was born in Africa it's highly unlikely that
she is pure-genetic-anything (just like most of the US population!).
3) Until I abused my GI doc into testing me, he had NO Celiac patients at
all, because he refused to test anyone. To say her doctor has only one
Celiac patient only means he isn't screening properly; to say that patient
is "Spanish" is irrelevant (see # 1 and 2 above).
-------------------------------------------
I don't know the prevalence of celiac in the African American community, but
in the Winter 1999/2000 issue of the magazine "Sully's Living Without" there
was an article titled "A Disease Without Boundaries- A Message to India" by
Kathy Evans Wisner. It was a story of a then 4-year-old boy from India and
his parents struggle for a diagnosis of his gastrointestinal problems and
how he threw-up after every meal. The Doctors in India did not have a clue
during one of their visits to family in India. When they returned to Chicago
where his father worked, they eventually got a diagnosis of Celiac Disease
from a Gastroenterologist at Children's Memorial Hospital in Chicago. It was
a great article that really dispelled the idea that only the Northern
European descendants can get this disease. This magazine's web site is
www.livingwithout.com . Maybe you can get a reprint of the article.
-------------------------------------------
I am co-facilitator of our gluten intolerance support group here in
Florence, SC. We do have an African- American member in our group. It is
rare among African Americans and people of Asian decent. The Gluten
Intolerance Group of America is based in the Seattle area so you should be
able to contact them easily. If you have any problem finding them, contact
Energy Foods @ www.ener-g.com. Mr Sam Wylde, III, President is personally
acquainted with the folks at Gluten Intolerance Group of America.
-------------------------------------------
As president of the American Celiac Family Support Group of RI for over 5
years I can tell you positively that there are Black Americans, Asians,
Italians, South American's, French, German, Irish etc diagnosed via biopsy
Celiacs in our group of over 300 members. Dating back to World War II it was
believed to be a Northern European disease. Let's keep in mind that we are
Americans - a melting pot of the world! Personally I am 50% Irish and 50%
German and it was my German grandmother with Celiac Disease. I have Celiac
Disease and two of my three daughters have it. Let's look for it in all
Americans!
-------------------------------------------
Sorry to hear about your friend. While the research I've heard of does in
fact confirm your doctor's opinion, consider this: unless your friend is
actually from Africa, & from an area where there has been no interracial
marriage, etc., she almost certainly has some "white" blood. By various
estimates I've heard, American "blacks" have up to 1/3 "white" genetic
makeup. Notice how Africans tend to be a good bit darker-complected than
American blacks? There has been a significant amount of interracial coupling
over the past several hundred years, here & in other countries (Caribbean,
etc.), so very few of us are as pure-blooded as we might (or might not:)
like to think. So, your friend may actually be able to blame her possible
Celiac Disease to her hidden Irish, English, or Scandinavian ancestry! And,
of course, this makes fuzzy racial guidelines in medicine, which should be
taken into consideration & can be tremendously useful, but should not be
taken as absolute truth. Think outside the box!
-------------------------------------------
Since this is going to a doctor, I'll be kind. I've had the same experience.
Doctors who refused to see the urgency in testing me before going on a
gluten-free diet told me I didn't have any of the symptoms after I had been
on the diet for several months. The pain was so intense I couldn't wait
until I got an appointment. After I pleaded, the inevitable happened--all my
tests came back negative. Aside from the inconvenience of not having a firm
diagnosis and not being taken seriously by Social Security in my disability
quest, I don't care what anyone thinks. I was in enough pain to seriously
think about putting a bullet through my head. I will not go on a gluten
challenge!!! A doctor who has discovered my accompanying and equally severe
fibromyalgia has revived my hopes of getting disability. American doctors
need to wake up. There are no pure blooded Americans. There are probably no
African American people who don't have some Caucasian genes, and interracial
families are popping up all over. Besides, Africans don't eat wheat. In
depth studies have not been done on the affects of wheat on African
Americans.
-------------------------------------------
Dear Doctor It seems you need reasons to test African Americans for
celiac diseases. The incidence of celiac disease in the US is now
suspected to be about 1 in 250. In the preliminary research that was
done by Dr. Fasano at the University of Maryland, Center for Celiac
Research, 2000 anonymous samples of donor blood was purchased from a
local blood center. These samples were tested for celiac disease using
tests, which looked for serum antibodies. Using a commonly accepted
incidence of 1 in 2,000, the researchers would have expected to find few
individuals who tested positive since those with anemia, a common
symptom of celiac, and those with other ailments would have been
eliminated by the donation process. When test results were returned, 8
of the 2000 were found to have antibodies associated with celiac
disease, an incidence of 1 in 250--similar to that found in Europe.
This study is the basis for the incidence study currently being
conducted at the University of Maryland's Center for Celiac Research.
(Find more on the research at www.celiaccenter.org. Pam King
([log in to unmask]) would be happy to fax you a copy of Dr.
Fasano's article "Where have all the American celiacs gone?") On an
interesting note, 40 of the 2000 donor samples were from African
Americans. And, one of these was in the group of 8 who tested positive
for celiac disease. Rate of celiac disease among this population based
on this preliminary study...1 in 40? Celiac disease has never been
studied in the African American population because it was assumed they
could not have it. Paraphrasing Dr. Joseph Murray of the Mayo Clinic--
Making a diagnosis of celiac disease is related to the degree of
suspicion...If you look for it, you will find it. Even if celiac is
specific to those of European origin; race in American is determined to
a great extent by the color of the skin, not by actual ethnic origin.
Many with dark skin may have European ancestry in their family history,
but it not visible on the outside.
-------------------------------------------
What an outrage! Many African Americans have "Caucasian blood" in them from
generations past, and of course it is VERY possible that some of them carry
this genetic condition. For that doctor to casually dismiss your friend's
concern, I would say that he was not only disrespectful, but also downright
insensitive and ignorant of the situation. I know you are looking for hard
facts as evidence here, but I just had to add my two cents on that doctor's
ridiculous response to your friend. He certainly did her a disservice by
reacting the way he did. How dare he say it is IMPOSSIBLE for her to have
celiac disease. What kind of a response is that from a knowledgeable person
in the medical community? Certainly not a responsible one! My advice: She
should drop that doctor like a hot potato and seek help at another doctor's
office.
-------------------------------------------
I was at a Bar Mitzvah and having only coffee since I can't eat bagels,
etc. Someone sat next to me and inquired as to why I wasn't eating and
I told them I had celiac disease. She said her friend had gone to a
Gastroenterologist and he refused to test her because she is "Jewish"
and Jews don't get this disease. I looked at her and all I could say was
"DUH!" My son's doctor said he didn't think there was a one in a million
chance that my son has celiac because he was in the 99 percentile for
weight and height. After he diagnosed my son with celiac, he changed his
mind about the typical symptoms for CD. My feeling is that the only
generalization you can make about celiac disease is that there isn't one!
-------------------------------------------
Because celiac has a strong genetic component it is only very, very rarely
seen in non-whites. This is because the genes appear to have developed in a
European population. However, your friend's doctor appears to be assuming
because your friend has at least one drop of non-white heritage, she cannot
possible have celiac. That would seem to have things backwards. If your
friend's family has any history of any length in the U.S. or is from a
coastal area of Africa, the likelihood that European ancestry entered her
heritage is not at all impossible, and perhaps is not even that remote. Just
as the reverse (addition of black, Asian, or Native American ancestry) is
true for many American "whites." Simply because racial mixing was not widely
acknowledged in former times does not mean that it did not happen. Any
European ancestry could have introduced the gene into her family and thus
could lead to her being susceptible to celiac. Unless your friend's doctor
is absolutely positive that your friend's ancestry could not contain a
single person of European heritage, then making a blanket statement that she
could not possibly have celiac does not match with the reality of human
history. Rare is not the same as never.
-------------------------------------------
I have a family of Black Americans in my support group; the mother and two
of the children are biopsy positive celiacs. The disease is one of European
descent, but our country is one big melting pot. If there is any Caucasian
blood in the Black family there is a possibility of celiac disease. The
antibody screening is not expensive, it is easy to do. I suggest the family
find a doctor who will do it.
|
