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Thanks to all who responded. I was surprised how common "banana babies" (as
several people put it) were.
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I sure can relate to your case. I also had celiac as a baby(11 mo.) My
mother took me to a specialist and he said I was bordering on celiac. I
had a distended stomach and bad diahrea, very thin and pale. Like you I
was put on bananas and liver extract but also alot of ground meat. At
age 6 he told her I could start on other foods but no pasta or soda. I
continued to be unwell all my life, anemic and very fatigued alot of the
time. At age 51 I got real sick. No diahrea but severe migranes and
vomiting and all these years I had been sneezing my brain out. Funny
how it comes back differently.
I put myself on the gf diet and almost immediately my allergies went
away, I had energy which was wonderful and made a remarkable improvement
in every way. I have been on the diet 7 yrs. At present I am ok but not
as good as I was, maybe just getting older!(I am 59).
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Everything I have read (a lot) indicates that celiac babies often go
into a "remission" for a number of years, but full-blown celiac always
seems to show up again. I even hesitate to use the word "remission"
because this is an outside body indication. Damage may still be
happening on the inside.
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I had the exact same experience as a baby. I was kept GF for about
5 years, though.
Most of my life, I felt under the weather. In fact, the only times I
really felt good was when we would spend summers in Cape Breton Island,
Nova Scotia. We lived off the land, and didn't eat bread. We did have
oats, though (which makes me feel that oats should be okay). For the
whole summer, I would be at my best. When we would get back to Boston,
I would get sick. We would attribute it to the change of climate, and
not having fresh, organic foods to eat. Probably a bit of both. Mind
you, the information about CD was scarce.
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It boils down to this....there is no cure for celiac. It was commonly
thought that kids "outgrew' celiac sprue, but we now know that this is
simply not the case. As the celiac assoc says "once a celiac, always a celiac"
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I too was a "banana baby" in the forties. In those days celiac was known as
a collection of symptoms in children, while "non-tropical sprue" was known
in adults and thought to be a separate disease. The connection to gluten was
discovered in Holland in the early fifties, but of course took a while to be
disseminated to clinical physicians.
I followed a typical pattern. As I moved into later childhood the symptoms
abated, though looking back it was obvious they never disappeared. I started
to have serious GI problems again in my early twenties, and ten years later
connected it to my childhood celiac and went on the GF diet. One explanation
is that people are generally healthiest from late childhood to the early
twenties, and the good health masks the symptoms. At any rate, it is now
understood that CD is a genetic, lifelong illness. A celiac may be
asymptomatic but still at risk for celiac complications like lymphoma if he
is eating gluten.
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At one time there was thought to be two diseases, Celiac which was a
childhood disease and Celiac Sprue which was the adult disease. My
understanding is that it was always felt that Celiac Sprue was life long.
Once the adult contracted sprue s/he had it for life. Celiac disease was
believed to be something children could grow out of. We now know that this
is one disease and children do not get cured or grow out of celiac disease.
However, since diagnosis was done by the gluten challenge, some of those
Celiac babies may actually have had a wheat allergy which can be outgrown.
But, the child would have shown improvment on the gluten free diet because
the gluten free diet was wheat free and so the allergen was removed. When
the child grew out of the wheat allergy his/her "celiac disease" was cured.
But in reality the child never had celiac disease.
In addition to all of this, it is still widely held that during puberty the
overt reactions to gluten (discomfort, vomitting etc.) decrease. The
internal damage from eating gluten still happens but the celiac does not
feel the reaction as strongly. So, at this stage it may appear that the
celiac has been cured but infact has not and will be revisited by the
disease at a later age.
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When children were put on the "banana" diet, it was not known why the
diet worked just that it did work. The relationship between gluten and
celiac was not definitively established until after W.W.II by Dutch
doctors. Then, it was thought there were two separate diseases--Non-
tropical Sprue, found in adults and Celiac Disease, found in children
and often outgrown. In the 1970s, it was determined they were the same
disease (celiac-sprue), and that the sensitivity to gluten was life-long
and could not be outgrown. While symptoms often seemed to disappear
during adolescence, biopsies and now visual endoscopic examination of
the small bowel enable doctors to find classic celiac damage even if
there are no symptoms. The newest tools are high sophisticated blood
test to detect antibodies to gluten in the blood.
While the symptoms of celiac have been reported for almost 2000 years, it is
actually a new disease. When the cause was only found 50 years ago, the
disease was thought to affect ONLY the GI tract. The effects of the disease
on the immune system & its role in other disease has only come under
investigation in the past 15-20 years with the development of new technology
and understanding of immune system function. Science has only touch the
surface in investigating the disease.
MOST IMPORTANTLY, celiac is a hereditary condition. You have probably
sensed that. The best reason to be diagnosed is so your children &
grandchildren can be tested. Since this is a lifelong condition, the
disease/damage is progressive & will result in irreversible
complications which affect their health for the rest of their lives. If
the disease is detected, and the diet started, early, there are NO
complications resulting from the disease and have healthy, productive
futures. While the diet is restrictive and complicates one's lifestyle,
it is only food, after all, and is small price to pay to preserve/insure
one's health.
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The same thing happened to me. I was DX'd at Johns-Hopkins in 1952 as a
celiac baby. I was put on a special diet for a couple of years and then
pronounced "cured". Despite that I still remember barley and malt
bothering me. Symptoms started coming back in my 20's. For the past 3
years now, I've been on a GF diet. There definitely isn't a cure. The
condition is genetic and, if you have, you have it.
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The doctors in those days gone by did not intentionally mislead your
parents. The fact is that very little was known about celiac disease at
that time. They prescribed the banana-rice diet for young celiacs
because it had been found to be effective in relieving the symptoms of
celiac disease--not because they knew why it worked. After Dr. Wim Dicke
discovered the connection with wheat & related grains & published his
findings in 1950, the banana diet was abandoned. The gluten-free diet
became recognized as the sole effective treatment for celiac disease.
Not long after this, it was recognized that non-tropical sprue, then
thought to be a separate disease of adults, was the same gluten-
sensitive enteropathy. The children with celiac disease who later
developed sprue had not developed a new disease, even though their
symptoms as adults might differ from the bloated abdomen and/or short
stature they suffered from as youngsters. Why had they seemingly been
cured of celiac disease (the disappearance of symptoms after the removal
of gluten from their diet & the seemingly non-harmful reintroduction of
gluten into their diet as older children or adolescents) only to have
the symptoms recur in later life? We don't know the reason why; we can
only recognize the fact that it is not uncommon for celiac disease to go
into remission in the teen years. When this happens, it is very
difficult to convince the child to remain on the diet. After all, he or
she is able to eat gluten without developing symptoms. We do not know
what effect gluten will be having during this asymptomatic period.
However, we do recognize the importance of proper nutrition during
adolescence. Just one example--what if the teen is malabsorbing calcium
because of his asymptomatic celiac disease (osteoporosis is usually
asymptomatic)? Throughout childhood, the teen years, and early adulthood
(until about age 28), we are building our bone mass. Does the celiac
child in remission suffer calcium malabsorption? If so, when symptoms
recur in middle age, there may have been serious bone loss. Another
example. Researchers in Italy have shown that the longer the exposure
of a child with celiac disease to gluten, the greater the risk of
developing associated autoimmune disorders. A third hazard. Untreated
celiacs (celiacs not on a strict gluten-free diet) are at an increased
risk of developing lymphoma or other associated cancers. After five
years on the gluten-free diet, the risk is reduced to that of the non-
celiac population.
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Research over the last 10 to 15 years has revealed that one never "grows
out" of being a celiac. The diet is for life. Just because you stop eating
gluten and your symptoms disappear, it does not mean that you are "cured".
It then takes about 2 years for symptoms to start appearing again as you
increase your intake of gluten. You may not have outward symptoms at all.
The damage could be totally INTERNAL. It is a BUILD-UP of eating gluten that
causes the symptoms. Some people of course, like your one sister, are
affected by even a small amount of gluten. Just because your other siblings
show no outward signs of the condition, it does not mean to say that the
anti-bodies won't show up in their blood.
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At least your parents/doctors found the right food... mom says the doctor
thought I was allergic to milk. So they gave me goat milk -- which ensured
that I didn't eat the cereal I was actually responding to!
For me as well the reaction disappeared until I was an adult and then came
back with a vengeance. And then after several years on the diet (and a much
less stressful life) I seemed to be able to tolerate wheat again. Until it
caught up to me once more.
This time I'm accepting there is no cure and ingesting gluten only
causes more problems down the road.
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Yes, the thinking (knowledge, actually!) has definitely changed over the
past at least 20 years! But many people are still under the misconception
that celiac can be "cured". While I haven't heard a lot about infants
"growing out" of the symptoms, but it is certainly common for symptoms to
disappear during adolescence and appear again later --- whether 10 or 20 or
30 or 40 years later!
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Yes, thinking has changed a lot since the 40's and 50's. I went to the
Ninth International Symposium on Celiac Disease held in Baltimore this
past August and the surprising thing I heard is that the experts now
consider the "classic" or "common" form of the disease to actually be
the rare form and that silent or latent celiac is far more common.
About 60% to 70% do not have the diarrhea and bloating but rather have
other symptoms -- bone pain, hair loss, depression, bone loss, vitamin
and mineral deficiencies, and so on. For example, I have had the blood
tests and am serologically positive (I'm scheduled to see a
Gastroenterologist) but I have NEVER had any of the intestinal
problems. I suggest that your siblings get their blood tested
especially your brother who was the banana baby.
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I was also diagnosed as an infant. Same story. Diet - bananas and dried
cottage cheese also some kind of medicine made from sheep's pancreas I
believe. I can still smell it - it was granules. My parents thought I was
cured also. This was in 1954. Over the years I started having alot of
problems with my stomach again and the doctor - even though he was told of
my celiac - said that was not it and said that I had colitis. I suffered
terrible until I got to the point that I thought I was dying and had lost 40
lbs or so and was having 30 or more stools a day. No exageration - I
started researching Celiac and found a new doctor - went gluten free and now
I am mostly OK. I do have very severe reactions with just a small
accidental ingestion of any kind. I agree with the mind set of doctors back
then. I also think that Celiac must go at times into a kind of remission
and then hits back full force. This is what happened to me several times
until I went gluten free.
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I have had every symptom known to celiac disease since the age of 3, known
as a "classic case" .I was diagnosed at the age of 44. I am now 76,
having recovered from 2 operations removing 15" of my small intestine each
time and being diagnosed as low grade lymphoma. Large doses of vitamin E,
lots of excersise and great doctors saved me; Drs. Ciaran Kelly , Celiac
specialist, and Dr. Stephen Come both of Beth Israel Hospital in Boston.
My advice? Run, don't walk to the nearest specialist you can find.
The number of the Center for Celiac Disease Research at the School of
Medecine at the U. of Maryland , Baltimore is 1-410-706-2715 . This is the
place that can tell you where to go for diagnosis. There are only certain
doctors and labs that are reliable and they will know.
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The relationship between wheat and celiac disease was not discovered
until 1951, when a Dutch medical student, W. K. Dicke, observed celiacs
improving under the absence of wheat during World War II, only to
relapse after the war. Before Dicke, it was clear to the medical world
that the key to curing celiac disease was in the diet. Exactly which
diet was unclear. In 1951, Dr. Sidney Haas published "Management of
Celiac Disease" in which he related his successful use in more than 600
celiacs of the diet you described. As far as he could ascertain, his
patients continued to remain healthy and fully active into their adult
years. Even after the realization of the role of gliadin, doctors
observed that after puberty, their patients could eat gluten without ill
effect. Only more recently, have doctors come to the conclusion that
celiacs must avoid wheat permanently. The modern belief is that
apparently healthy celiacs, like your brother, who seem to eat gluten
with impunity, under the surface accumulated damage is occurring to
their bodies. That is exactly what happened to me. As an infant I was
never diagnosed as a celiac, but my mother says I vomitted a great deal
and then for a prolonged period refused to eat anything except cheese.
To all external appearances and according to all my medical examinations
and tests I've been perfectly healthy ever since, until a positive
screening test for celiac. Only then did I discover the damage this
disease had all along been causing me - anxiety & fears, iron
deficiency, vitamin A deficiency, osteoporosis, fatigue. I bet your
brother will also benefit from avoiding wheat.
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Actually, the thinking has changed even more recently than that. My
cousin's son was diagnosed as a 'celiac baby' back in 1982. He was
pronounced 'cured' when he hit puberty. My son was diagnosed in January of
'94. We were told - bluntly- that celiac is for life. Another factor is
that my cousin's son was diagnosed by a US trained, older physician. Our
pediatrician is younger, and initially trained in England and Canada. We
were forunate.
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Yes, the consensus has definitely changed. My husband was diagnosed in the
70's, and the doctors still thought that celiac disease could be cured
forever. Today, they know a lot more. It is an autoimmune disease (they
didn't know this back when they prescribed the banana diet), so it is
permanent. It is NOT just the absence of a digestive enzyme like lactose
intolerance. Villi will always be damaged by anti-gliadin antibodies (the
celiac's own villi look like gliadin to the antibodies). Back in the 40's
and long before, doctors didn't even know that celiac disease was caused by
gluten. They thought that MULTIPLE biochemicals couldn't be digested
(including most fats, proteins, carbohydrates). They stumbled upon rice and
bananas and found that toddlers with celiac disease SEEMED to be cured when
they ate only these foods (when in reality they were only in "remission").
So they assumed that it was ALL of the other foods that couldn't be
digested.
My husband naturally stayed away from pasta and bread as a child. They make
him sick (including diarrhea and stomach aches) to this day. However, I've
heard that a lot of celiacs who are first diagnosed as children go through a
period of remission during their childhood and teen years where they are not
as sensitive to gluten. The sensitivity increases again in many of them at
some point as adults. The important thing to remember is that gluten may
STILL be damaging their intestines slightly (and putting them at risk for
intestinal lymphoma) even if no major symptoms are noticed by the person.
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It's a lifelong sentence, pardner! No looking back! Each time you
ingest Gluten from Wheat, Rye, Oats, yes Oats no matter what you've read
on the internet!, and Barley, it is harder to recover. The incidence of
Small Bowel Lymphoma is much greater in Celiacs who don't stay true to
the diet. For sure your brother will present sooner or later.
Meanwhile the damage is slowly being done to his small intestines and
OTHER organs. Ieven if he's a gambler he's sure to loose this one. You
too if you dont avoid gluten 100% of the time.
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