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This is a summary of the very good replies I received on my query on
Down Syndrome and CD. This has been very helpful and very informative
to me. I haven't heard from the mother, but perhaps in time her
physician will know to screen the child.
I included two replies that were not specific to DS (the one on
Tourette's and the incidence of a child with spinal bifida). These are
included in a later post. If you need info about CD as a factor in birth
defects, the following post from the archives is helpful:
http://maelstrom.stjohns.edu/CGI/wa.exe?A2=ind9510&L=celiac&P=R1436
But here's the summary:
I have a daughter with both DS and CD. Two years ago, when she was 8,
her Paediatrician suggested testing her for CD because her growth had
slowed. She was and still is very small for her age. Her blood tests
were positive and the biopsy although inconclusive did show her
intestine was inflamed. The paediatrician suggested going ahead with the
diet and other symptoms that improved were: decrease in "sore tummy"
complaints (which we had originally ignored since they regularly
happened at bed-time!), flatening of tummy (pot belly wasn't terribly
obvious because she has a sway back), improvement in mood (less weepy
over the slightest thing and more co-operative), fewer runny noses (used
to be almost non stop for months on end).
We all went on the diet for lunch and dinner to begin with, and while we
usually try to keep dinner gf, our daughter has become used to the fact
that she can't eat ordinary bread, cakes, pizza etc and will eat
substitutes (after making gf pizzas from scratch we've found the easiest
substitute is to use a slice of gf bread as the base and basically have
a fancier version of cheese on toast). Favourite gf foods are pancakes,
pikelets and waffles (the whole family eat these) with tomato sauce.
Bananas, milk- chocolate and plain potato crisps are the favourite
snacks. She still asks to eat ordinary bread etc, and when we say "no"
asks "why?". I now turn the question back to her and she usually answers
correctly that it has gluten (or wheat).
-Snip-
I have a 13yr. old daughter with Down's Syndrome. We discovered her
celiac last year. I have CD so I knew the symptoms. She became bloated
and had constant trips to the bathroom. Very foul and loose! She was
constantly hungry and very fatigued. I took away all wheat, oats, rye,
barley and within 1 week she was better. The transition was not too
difficult because she loves meat and vegetables and fruit.
She loves baked potatoes with cheese (I find that monterey jack cheese
doesn't cause any stomach ache). She loves french fries. We fry in
olive oil. She doesn't have problems with corn so she eats corn puffs
(Wise are GF) and corn chips. Check the oils. Canola causes problems in
some people. She doesn't have a problem with ice cream, we eat Breyers
vanilla. I also make us pizza with GF pizza dough. It's really not bad,
because I have never had many cookies or cake, etc. in my house.
We eat lots of fruit, vegetables, especially broccoli with cheese. There
are GF cookies in health food stores and cereals so that helps.
-Snip-
Hi, my name is Kay and my daughter Dawn is now 25 and HAS Down Syndrome.
She and I were both diagnosed four years ago by Dr. Joe Murray who at
the time was in Iowa City Hospials and Clinics now at Mayo.
The way I knew to check is that she was becoming very moody and so
fatiqued all the time and kept having bad stomach aches. Then finally
one day I came in from mowing the lawn to find her screaming and rolling
around on the couch so I took her to the hospital. They couldn't figure
out what was wrong with her in our town so she was transferred to Iowa
City. That is when her cardiologists told Murray about her as he had
been asking about any children with Down's and heart problems, so that is
how the testing started.
She was blood tested and biopsied and both came back extremely high.
The transition was not too dificult for her as we always ate fairly
healthy and once I would tell her something just wasn't healthy for her
she would pretty much leave it alone. There were sometimes when we would
be traveling or out doing errands and she would want to stop at a fast
food or a regular resturant to have her favorite foods which are burgers
and fries and I would have to tell her they weren't safe there and she
would get a little upset but would usually except it when she thought it
through. Wendy's has been our saving grace when she wanted her
favorites.
At home we eat really healthy meals. Nothing fried at all. I make one
meal for all and that is what she gets. We've never allowed the kids to
be picky eaters. They had to try everything so it has worked out well
for us. She is the only one of the two left at home.
It also helps that she takes cooking lessons at home from a Goodwill
community trainer so she is pretty proud of what she makes. I have been
working on a cookbook for her for the past four years and it is written
in high fourth grade level reading so she has a ton of recipes to work
from. She does very well and loves to serve us at night with the meal
that she made of parts of it anyway.
She loves to make a chocolate chip cookie I revamped for her uncle and
grandpa. Their very chewy, not hard and crumbly.
-Snip-
I'm the proud mother of Eddie who is an energetic 2 year old with DS
and CD. We were very fortunate that Eddie was diagnosed with CD at the
age of 11 months. At seven months of age (just starting cereal), he
began having symptons of a respiratory infection and it just won't go
away. He also started refluxing really bad so we changed from an infant
milk formula to soy formula. Up to six months of age, he was breast
feed. His pediatrician treated him for a common cold until he got
really sick. Upon a visit to another pediatrician, his oxygen sat was
taken and it was really low and probably had been for sometime. We
spend a week in the hospital being treated for a respiratory infection,
and came home on oxygen with breathing treatments every four hours.
After two weeks at home on oxygen he got worse. We then were
hospitalized in a more pediatric friendly environment and started
undergoing lots of test. It just happened that his pediatric gastro
doctor, new to the area, was familiar with CD and suggested we have his
antibodies checked. Well you guessed it, they were in orbit. We had a
biopsy done which confirmed the CD and put him on a strict gluten free
diet. Within two weeks he was off oxygen and his reflux was starting to
be controlled.
He has been gluten free (as much as I can control) every since and is
thriving!!! Since Eddie hadn't been introduced to any other food except
gluten free, he has no problems. He attends daycare and I just pack his
lunch to look like everyone elses. I even make him gluten free goldfish
and he thinks they're great. He loves chicken fingers, meatloaf and the
campbell soups that are gluten free (Potatoe, chicken with rice).
-Snip-
have a daughter with DS and CD who is 27 yrs old. About 5 yrs ago, her
doctor suggested she may have CD, but since her symptoms were very
sporadic, it was not pursued. She occasionally (maybe every 3-4 months
apart) would have an attack of diarrhea, get dizzy and fall to the floor.
Several years passed without the dizziness and falling and we accepted
that the diarrhea was just coincidental. Last spring, the dizziness
accompanied by diarrhea returned and we visited a gastro- enterologist
who explained CD to us, the risks of the biopsy and the risks of not
doing anything. Her blood tests were positive,so we decided to go ahead
with the GF diet. We are fortunate that she has never met a food she
doesn't like, so adjusting to the diet has not been that big of a
problem. She does like to have a GF version of whatever we are having if
we are invited to dinner or a restaurant, so I prepare ahead of time and
freeze individual portions I can just take along with us. At
Thanksgiving, we took turkey I prepared gluten-free at home to the
restaurant along with her GF veggies,a rice roll, GF salad dressing and
GF dessert. (We have in our freezer GF pecan pie and lemon squares I
ordered, and GF brownies, Pound Cake and Cranberry Orange muffins I
baked.)
Our daughter has no other known health problems. Looking back, she
probably had symptoms of CD all her life. Her pediatrician never thought
to screen her for CD. As far back as 2 yrs old, she would have very
frequent episodes of unexplained diarrhea. About 6 yrs. ago, she
started going to the Adult Down Syndrome Clinic in Park Ridge, IL and
that put us on the right track. (If I might brag a bit, she now works
there in the office part-time and co-leads an aerobics class for adults
with DS.) I have been active with the National Association for Down
Syndrome for 26 yrs
-Snip-
We have 2 in our support group. One diagnosd about age 7 or 8, the other
was 12. Behavior/cooperation improved. The older one was also diabetic.
blood sugar levels improved as well. Both were probably diagnosed at
Children's hospital here in Milwaukee, but not necessarily by the same
doctor. One, a boy, has been diagnosed for about 10 years--he's probably
in mid/late teens by now. Other, a girl w/diabetics as well, has been
diagnosed for about 2 years & is probably 13 or so.
-Snip-
have an 8 year old daughter who was born with Down syndrome. She was
diagnosed with CD almost a year ago after her then 3 year old brother was
diagnosed. My son has always had what we thought was reflux. Now we
know he has CD. We tested her because CD "is not uncommon" in children
with DS. We did a blood test, preferring not to biopsy her since
children with DS can have very bad reactions to anesthesia and sedation.
Her blood test was positive. She responded beautifully to a GF diet:
her hair got thicker, her disposition improved and the congestion she had
been harboring for two years disappeared.
She and her brother had adapted well to the diet. They both ask if
things have gluten in them prior to eating something I have not provided.
-Snip-
The following paragraph is from:
http://www.wwwebguides.com/nutrition/diets/glutenfree/resea.html
November 1993. European Journal of Pediatrics. Authors Hilhorst MI.
Brink M. Wauters EA. Houwen RH. Institution: Department of
gastro-enterology, Wilhelmina Children's Hospital, Utrecht, The
Netherlands. The frequency of coeliac condition is 43 times greater in
children with Down syndrome than in children without Down syndrome. It
should be strongly considered in all children with Down syndrome who have
either persistent diarrhoea or failure to thrive.
-snip-
I have just been diagnosed with CD. I'm 55 and have had symptoms of CD
since I was a child. I hadn't heard of it and was never tested until
last month by a new gastro. My biopsies showed complete loss of villa
(not just flattening) and the lab called my dr to say that the tests were
the highest they had ever seen.
I have had three miscarriages and have a daughter born with spina=20
bifida. I also have a son that has all symptoms of CD (he's 37), but I
doubt that he will go to the doctor.
Our son is not Down Syndrone but I thought what I have to share might
help you a little. He is 11 and began a neck jerking that his Dr. said
could be and probably would be Tourettes...we put him on a gf diet!
Actually, after a few weeks on it I also discovered that his vitamins
that we were giving him were *NOT* gf so we immediately switched and
guess what? No more neck jerking!!!! He is also calmer!
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