<<Disclaimer: Verify this information before applying it to your situation.>>
Boy did I hit the jackpot and a nerve with some. Rather than summarizing
I'll copy the responses. I want to first say thank you and then let you
know that I appreciate the time that each of you spent collecting and
writing information. Reesa
1.I have read, maybe on celiac.com someplace ,that there
have been cases of overweight people having cd.
2. There is one thing I have been told by my Dr., a gastro experienced in
treating CD and that is it is his experience that of all the patients he has
treated for CD, about 1/3 were underweight, 1/3 normal weight range and 1/3
overweight. I think the mentality that believes you have to be underweight
and malnourished is one of the reasons why CD has been overlooked and not
properly diagnosed in this country. There is quite a 'push' going on right
now for Dr.'s and dietician's to become more aware of CD and the gluten free
diet. I did fall into the weight-loss category when first diagnosed, I lost
30 pounds in the 8 months it took for me to get diagnosed. I also had DH
and severe gastro intestinal symtoms. I was very classic and it still took
8 months for diagnosis. Of course this was also 20 years ago. Thanks to
the support of groups such as GIG and CSA and probably the internet, the
word is finally out there. My gastro Dr. finds CD to be much more commonly
diagnosed now.
My aunt had CD, constant severe bowel symtoms, rashes, and did not watch her
diet and died of lymphoma at the age of 62 and she was very over-weight.
Not sure if it can skip a generation or not. So far it does not appear in
my kids, my nieces or nephews, but they are all in the 15 years to 22 years
age group so it could still show up. My guess would be that yes it could
skip a generation easily, but I have no scientific evidence to quote on that
one, just basic genetics.
3. Hi :) Here is my take on your situation. Yes, celiac disease is passed
through the generations as you indicated. BUT: to develop celiac (not just
have the genetic predisposition to it), one must have a "trigger". This
means that you could have descendants with the gene who did not trigger,
making it appear to skip a generation :)
4. I am sure that i have read somewhere that not only is failure to
thrive a symptom of celiac disease but also being over weight. I will
try to locate the article and pass it along to you.
They may have celiac and may not even know it yet.
5. I have two thoughts for you. First, CD is not looked for by most
doctors. So, CD can skip a generation in so much that no one in a
generation has been diagnosed not necessarily that no one in that
generation has it. Doctor's like your Mom's do not test without classic
symptoms. But I heard Cynthia Kupper from GIG speak once and if I remember
the statistic right only about 10 -20% of celiacs present with classic
symptoms. So, docs like you Mom's are missing a lot of celiacs.
Second, I have read that you can have the gene for celiac disease but no
have it. You need a trigger event to actually suffer from the disease. I
am not sure of the accuracy of this. However, if your Mom's generation
never had a trigger event, there could be latent celiacs in that generation.
Reesa Zuber, LMS
Washington MS
Yakima, Washington
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6. of course you can be overweight and celiac- another ignorant answer from
another uninformed doctor
7. my understanding is that you have to get the gene from both
parents..therefore, your grandmother could have the gene, your grandfather
not...your mother could inherit the gene from HER mother, marry a man who
also carries the gene, and have celiac children..
8. also...;) I am overweight too. In fact, I am 100 lbs overweight.
Celiac can also lead to a leaky gut, and according to my doctor, fats
might not be digested properly, etc...so it's rarer than a skinny
celiac, but still possible
9. I have a co-worker whose grandson has Celiac. Neither of the
parents have Celiac; however, the grandmother on the mother's side and
all of the grandmother's sisters have been tested and are all Celiacs.
The grandparents on the fathere's side were negative for Celiac.
Therefore, it looks as though a generation was skipped in this case.
Celiac Disease is a very weird problem, I feel lucky that I was
diagnosed in less than a year in 1982!
10. You can have CD and be overweight. Both my sister and I have been
overweight since childhood and both have CD. We were diagnosed by blood
tests and biopsy. I was first diagnosed as an infant but was told I had
out grown it, so for 50 years I ate a normal diet. But was re diagnosed
at age 53. I managed to be at least 100 lbs overweight during most of
this time, so clearly obesity dose not rule out CD. However, our thin
sister's blood work was negative. My doctor, Peter Green MD from
Columbia Presbyterian Hospital NYC is very active in CD research and has
indicated that many of the CD patients he treats are overweight. You're
Mother and the rest of your family should be tested. I have talked most
of my family into being tested and that is how my sister and my son were
diagnosed.
11. I do not know if celiac can skip a generation. I do know you can be
overweight and have cd. I have been heavy all my life. My doctor also told
me that I insisted on the test and the biopsy was positive. Very few people
have the "classic presentation" of underweight with severe Gi symtoms.
12. I was about 20 -30 lbs overweight when dx. Just ate about 4 times
as much as most people.
There really are no *normal* celiac patterns. The most common are fatigue
and gastro problems.
13. First, many people have the genetic make up for celiac but the
disease is never activated. Often it takes some kind of trauma to
activate it, such as physical, emotional, or viral. Mine was activated
after a double spinal fusion. So I'd think you could have celiacs all
the way back, none of whom may have demonstrated symptoms.
Second, of course you can be overweight and celiac, one fourth of us have
have problems with constipation and/or overweight rather than the
opposite. But of course, being overweight is not a sign of celaic without
some other symptom indicators.
Third, yes I would think it can easily skip generations, especially if
there's a recessive gene in you grandmother, but also a recessive gene in
your mother and father. Neither actually has to manifest celiac symptoms.
14. yes, take blood tests of everyone envolved
neil in pa, mine skipped a genertion.
15. Celiac can certainly skip a generation, because not everyone who has the
genes gets the disease. There's only 70% concordance in identical twins,
for instance.
And you can be overweight and have celiac. I remember reading of a 6'10"
400 lb. celiac. Now that is extreme!
16. I don't know how typical it is, but I am very overweight due to years of
undetected hight cortisol levels due to a pituitary tumor (Cushing's
Disease). Once the doctors got done deciding whether or not I had
diverticuli, I began seeing the light; both of my children are celiac, and
I just wasn't watching for the symptoms. I have not shed the steroid weight
from the tumor, but other problems are gradually improving, my doctor is
happy with my lipids, and none are really after me to lose the weight as
long as I am stable.
Genetically, both parents have to contribute genes toward a child
celiac. It is unlikely, but possible, for one child to be celiac and
another not celiac. In 1970, a pediatritian told me that chances were 1 in
600 of having a second celiac child.
In 1971, my obstetrician told me it was a recessive gene, and each child had
1 chance of being celiac, 2 chances of carrying the gene, and 1 chance of
being a non-carrier of the celiac gene. More recent studies show the
chances of being Celiac are higher than that, but my mother's generation
seems to have been skipped. We don't have enough information on my father's
family to tell a lot, but me and my children are the only ones that I know
of that are celiac.
17. I was not diagnosed because I too was overweight but had told the doctor
that I had lost 25 lbs the last two years without dieting. I think it is
possible to be overweight and have this. My 90 year old mother has always
been overweight and am sure she has it but neither she or her doctor will
consider it!
18. Yes, CD can skip a generation.
Yes, you can be overweight and have CD. The percentage who have chronic
diarrhea and weight loss is very small- they call it the "tip of the
celiac iceberg". BTW, I was somewhat overweight, and in one year I lost
15 lbs. so far on the gluten free diet. I'm not eating the cookies and
crackers any more!
19. I am the only one in my family that I know of that has celiac. I am
sure it can skip a generation. To the best of my knowledge neither of
my parents have it, nor my brother or grandparents or anyone else. My
dad, however, does have problems with his stomach. He calls it a
nervous stomach, but he eats bread and other things and seems to do OK.
My grandmother on my father's side could have had celiac, but we will
never know for sure because she died of cancer a year before I was born.
20. Genes are pretty funny things. My paternal aunt had CD, but my
grandparents didn't, neither my father nor his other 6 siblings have it and
of some 20 or so 1st cousins, I am the only celiac. I also have two other
autoimmune illnesses that no one else has (or had in recent memory). I say
it can definitely skip.
21. Though I've researched CD extensively, I do not have an answer for your
question. What I can tell you is that: "Celiac disease ... (has).. a
multifactorial etiology. HLA and non-HLA genes together with gluten and
possibly additional environmental factors are involved in disease
development. Evidence suggests that CD4+ T cells are central in controlling
an immune response to gluten.... " (Ludvig M. Sollid, Molecular Basis of
Celiac Disease, in Annual Review of Immunology; 2000 18:53-81) The same
paper goes on to say that monozygotic twins have a high concordance rate for
CD, of 70%. Sollid goes on to discuss a "gene dosage effect" exemplified by
individuals who have a particular configuration of genes that apparantly
carries an even higher risk for developing the disease than either of the
components of this configuration alone. (Did that make sense? Suffice it to
say that, there are those who have sort of a genetic double-whammy that
makes them highly likely to have the disease and they suspect that's because
these people have two sets of predisposing genes, and not just in terms of
two alleles for one trait.) I think your suggestion of the possibility of
you having inherited two recessive alleles, one from each parent, is
definitely plausible, but I think it is more complicated than that because
there is more than one gene involved in the development of CD, and it seems
there are also definitely some environmental factors.
On the more personal level, I believe I and my kids have either CD or a
closely related gluten intolerance disease. My grandmother appears to have
had something like this as well. She had classic celiac disease signs such
as being underweight, lots of gastrointestinal symptoms including diarrhea,
etc. She went pretty much her whole life not feeling well and suffering from
a lot of allergies. She went gluten free back in the fifties, for a while,
but she did not stay on the diet. She then died of lymphoma in the early
'80's. My mother, who has symptoms that could be CD related, will not be
tested, as there is no medical proof that I or my children have the disease
(we won't go back on gluten in order to be biopsied--we sort of found out
about our gluten intolerance almost by accident). My son has nearly classic
CD symptoms when eating gluten, including diarrhea, but never has been
underweight however (in fact he and I both lost weight after going gf--I
have read that there can be an insulin-like effect of the gluten grains
which actually causes some gluten-intolerant individuals to turn carbs into
fat more readily). As you comment about your relatives and their docs, the
fact of not being underweight alone causes them to dismiss the possibility
of CD. We went through this with the three GI docs we saw in an attempt to
get a diagnosis. This only shows how dated is the picture of the disease
that these doctors maintain. I have read that about 50% or more of celiacs
have no signs of undernourishment either in terms of height/weight ratio or
blood tests for nutritional status. The point of all this is, in my family
it appears that my grandmother had the disease, and that I and my children
have it. My mother very well may have it too but since she won't be tested,
we may never know.
I think it is quite possible that CD shows up in different ways (i.e.
nonclassic, classic) in different individuals, and that thus, it appears
to skip a generation, but in fact may only occassionally do so. Think
about how unlikely a person is to get a diagnosis of CD if they are,
say, both overweight and tend toward constipation! Nonetheless it is now
recognized that about 10% of celiacs get constipation as opposed to
diarrhea when exposed to gluten. Additionally, there are forms of gluten
intolerance that are closely related to but not quite the same as CD,
such as some of the neuropathies described by Hadjivassilou (sp.) where
they find antibodies to gliadin but not antiendomysial antibodies. These
neuropathies cause destruction of nerves, various forms of ataxia, and
other nerve-damage-related diseases. These people, instead of getting
intestinal damage due to the autoimmune reaction, get nerve damage. Its
the same process, but a different area of the body is damaged. This is
nicely pointed out in an article by M. Hadjivassiliou et. al. called,
Gluten Sensitivity: a many headed hydra -- heightened responsiveness to
gluten is not confined to the gut, appearing as an editorial in BMJ
1999;318:1710-1. Furthermore, there are autism and shizophrenia, both of
which have been known for a long time to frequently show dramatic
improvement on a gluten free (and casein free) diet. It would be
interesting to note the frequency and distribution of all the various
gluten induced disorders in families where there is a prevalence. In my
daugher and I there are more signs of nerve-involvement, and in my son
and grandmother, more intestinal and classic CD signs, though in all
there is overlap, as my daughter and I also have some intestinal signs as well.
Your mother and her sibling (?) may have latent or subclinical disease, and
they may have neither but have a related gluten intolerance disease, and
finally, of course, they may be lucky to have none of those, but I would
suggest that the possibility that they are affected to some degree is
considerable enough to warrant investigation. In fact, simply the fact that
you have diagnosed CD means that they should be tested, period. The test
for antigliadin antibodies is so cheap (about 18 dollars) that if they are
at all concerned about being proactive regarding their health, for example,
reducing the chance that they will die of lymphoma (not a nice way to go),
perhaps they will bug their docs to do the test or will find a way to have
it performed themselves (there are some labs, at least here, that will allow
you to order a test--they keep a doc on hand to fulfill the legal
requirements). While this test is not specific for CD, it does tell you that
the immune system has a heightened response to gluten.
Well, I hope some of this is useful information for you. As you may be able
to tell, you hit on a subject of great concern to me. I am so frustrated
both by the medical professionals and by my family.
22. I'm sure that CD can skip a generation, just as any genetic disease can.
Also, if you have a doctor who says overweight people cannot have CD, he is
WAY behind the times. I was not overweight but I was well within average
weight guidelines, as was my father. I can't find it now but I just re3ad a
recent medical paper saying that overweight people can indeed have CD.
23. As far as we know my husband's parents didn't show any signs of the
disease but got a gene from both parents. He in turn has passed them to
our three children. So I would say someone could have the gene and it
just not be triggered and then it be triggered in the next generation.
24. Yes, celiac skips generations. In fact, there are articles that report
celiac in every third and fourth generation. In my family, my maternal
grandmother and her aunt had celiac. They were both very sickly and died
early of stomach cancer. It is primarily a female disease.
As for your mother, obesity can be a symptom of celiac. The body thinks it
is being deprived of nourishment and slows the metabolism to accomodate.
Every one of your first degree relatives should be tested.
25. I am overweight and I do have celiac. My biopsy was positive and my
blood work was also positive. My Dr. was surprized they came back positive;
he tested me because something in my my chart triggered him to do so. I had
never heard of CD until he diagnosed me, so it wasn't me planting a
diagnosis in his mind. I am glad what ever triggered him to test for CD was
there. However, after much research on CD, I definitely know more about the
disease than he does. This means just because they can test and diagnose CD
does not mean they know all there is to know about CD, symptoms etc. My Dr.
did say this to me on the weight issue. I am not a typical CD patient. But
better testing procedures have allowed Drs. to diag. atypical CD people
where before you had to be losing weight and dying before a diag. was made.
Great news for everyone! Good luck with your answers. Hopefully this helps
you.
26. seems to appear that it skips a generation...perhaps
some remain symptomless...etc...
27. Unfortunately most doctors just do not have the facts. I know that I
read in a medical book somewhere that you certainly can be celiac and
overweight, thought these patients are usually missed because they expect to
see wasting. I think it has something to do with the real hunger that comes
from not absorbing what you need, but the body still manages to store extra
calories.
Best of luck (and it could not hurt and might really help them to
investigate ruling out Celiac!).
28. Overweight can be a symptom of CD, but I do not know which symptoms
accompany it? This is huge overweight. And as far as I know I am the
only person in my family to have it.
29. I have a question that I have wondered about for some time. I know
that celiac is inherited and I also know from my science about genetics and
how it works. But if I have cd and my first cousin on my mothers side
has cd and I believe that my mother's mother had cd, can cd skip a
generation and my cousin and I have it but our mothers don't? NOT VERY
PROBABLE MY DADS Dad and my dad and i Iliac, my mothers mom ,my mother
, my brother ,my Sisters? And my little brother died at 17 mo with it .
Most of my kids, GRAND KIDS AND NOW GREAT GRANDKIDS NO I CAN'T SEE IT
SKIPPING SORRY. Did it surface because I got recessive genes from both
parents? Or are our mothers celiac also and just don't know it?
PROBABLY DON'T KNOW IT OR IT CAN BE THE DADS I DON'T THINK They are so
recessive these genes , they seem to explode in some families And of
course lots of families that have symptoms just hang it onto the FLU AND ETC
The reason I ask this is that my mother and her mother and my cousin
are all overweight and always have been. My mothers doctor says oh you
can't be celiac because you are overweight. COPY FROM THE INTERNET " A
DOCTOR Describes coeliac disease by joseph murray,md, phd. In it (15
pages) Tells of a 400 lb woman with mental problems that checked out
for celiac. Some can absorb fat and carry a good weight but.......are
still Malnutritioned cause they don't absorb the nutrients ,s o they
eat and eat Because their bodies are craving for the nutrients and
can't find them. (MAKE SENSE?) My symptoms are not the typical. AND
WHOSE REALLY ARE NO Two are exactly alike. Some are asymatomatic for
yrs . I couldn't absorb Fat and so i was always thin ,boney and etc.
Some have raging diarrhea, And constipation off and on but towards the
end all diarrhea. And Vomiting . Some are sick from young on and in
adult life die or nearly. Some are diagnosed so late that the damage
is permanent and can live on Enteral diets for a while
but......eventually .....if the dr is smart will Put that person on
tpn(like me) some drs just peddle drugs well i hope i HELPED SOME ,
IT'S TOUGH IT'S HARD BUT WELL WORTH THE SURVIVAL (LIL) Some insights
from those of you who have done more research would be greatly appreciated.
30. celiacs can and often do have a weight problem because they eat
foods with butter and other fats. The other celiacs I know have a
constant battle to keep their weight down.
31. Your mother's doctor is SO SO SO wrong! Many celiacs are overweight. I
have read statistics that reveal it is just as likely for a biopsy-diagnosed
celiac to be overweight as to be underweight or average. I was a short
skinny kid, but became overweight in adult life (but still short). One Irish
woman, diagnosed on biopsy, weighed over 300 lbs. Check the history and
studies on www.celiac.com.
One theory is that the body, starving for nutrients undigested by the
CD-damaged gut, drives the sufferer to keep eating, piling on calories in a
vain attempt to get the nourishment it needs. Sounds reasonable to me. Since
going gluten free, I have dropped a lot of pounds without effort or other
dieting, and am holding steady, although I have not yet reached what I would
like to weigh. Considering the damage over 50 years of undiagnosed cd has
done to me, I am grateful. I also feel a LOT better in many other ways.
32. Celiac Disease is not caused by a single gene. There are two known
genes that seem to make up about 50% of the risk together, and then a
larger number of unknown genes that comprise the balance of the risk.
Furthermore, genetics only accounts for about 70% of celiac incidence,
with 30% of the risk coming from unknown environmental factors. So your
Mendelian thinking does not apply, and CD can certainly skip one or
several generations.
A doctor who thinks you can't have CD because you are overweight is an
ignorant boob.
33. Reesa, in order for you to have CD one or both of your parent's had to
carry at least one marker for the disease. That marker was passed on to
you. However; the only way that you have the disease is that it was
triggered by something (surgery, infection, trauma, etc.). Many people have
the marker for CD and never develop the disease. As for your Mom, the
doctor is totally wrong about it being impossible to have CD and be
overweight. Dr. Murray (Mayo Clinic) has written of many patients that were
obese, some over 400 pounds that were found to have CD. By contrast, the
overweight patients tend to lose a great deal of weight after going gf.
Hope this helps.
34. Since celiac has a to have a trigger, your mother may merely never
had that happen.
Also, you doctor is mistaken on celiacs and weight.
A Swedish study, which I have unfortunately lost, noted that celiacs were
distributed from the under weight to the over weight (1/3 were over
overweight) and the authors thought that one could not conclude that weight
is an indicator.
35. It definitely can skip around. My Irish grandfather is
the source of my and my first cousin's CD, I'm
convinced. He died of esophageal cancer, (was always
very skinny) and his father died of pancreatic cancer.
Both were known to have 'indigestion', and my
great-grandfather had 'problems with milk'.
Many celiacs on the Delphi list are currently sharing
info about not having typical wasting symptoms, but
struggling with weight+plus issues...so I believe
there is a lot of room there...Also check the
www.celiac.com site for Dr. Murray's lecture on Celiac
where he discusses an atypical patient presenting with
obesity and constipation.
36. That's a great question. My mother and aunt are all overweight but all
have health problems. Doctors have told they don;t have celiac either. But
they have heart problems, diabetes, & diverticulitis, to name a few. Please
summarize.
37. I read a while ago that 1/3 of celiacs are overweight, making it
harder to make your doctor take it seriously.
Yes, the reason Celiac can appear to skip a generation is that it takes some
trigger to get it started, like stress, surgery, pregnancy, or in my
husband's case the Anthrax vaccines he got. So a generation may not have
been "triggered" into exhibiting symptoms.
38. I am the only person in my family that has celiac... I am also extremely
overweight.... I was diagnosed a year ago this month. I have always been
overweight, and the celiac didn't change that.
39. I think celiac must be more complex than the simple dominant-recessive
model - we all learn about eye colour, but this is really simplified because
there are only a few genes involved. It seems from this list that there are
a whole range of symptoms and degrees of celiac disease, so I wouldn't be
surprised if there are a range of genes involved.
I personally was tested because my dad had finally been diagnosed after
years of problems, and I had the blood test just to rule it out - I am tall
and healthy, but my antibody count was even higher than Dad's - he was
always a little overweight while having constant problems, and I don't have
any visible symptoms at all. So I think it is possible that the ladies in
question may have the disease, but like me don't show it. There I so much
we don't know!! I will caution though against a crusade for them to get
tested - neither of my sisters has been tested even though my younger sister
has always been slight, but they just aren't interested.
40. Thanks for a great dialogue on the subject! I surely am armed with the
information! Thanks, Reesa
Reesa Zuber, LMS
Washington MS
Yakima, Washington
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