<<Disclaimer: Verify this information before applying it to your situation.>>
In doing the survey, I had mail from Brenda Laney that I felt should be
shared with all of you. She gave me permission to post to the list, and I
think her collected information and knowledge will be invaluable to us, and
maybe we can answer some of her questions. Denise May in TN
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>From Brenda:
....My husband was the one with sprue. He was diagnosed with
nontropical sprue-got sick while serving in Thailand in the
AF in 1970-71. No prior problems-in fact he had entered,
completed and won second place in a 400 mile bicycle just
prior to going to Thailand (within a year before). No
family history in his very large family. Joe was sent from
Tinker AFB-Oklahoma to Sheppard AFB, Texas for the diagnosis
Through a mix up we didn't find out about until 1991 Joe
didn't get treated or followed up. It was in the records to
do both but his doctor was leaving and it slipped through
the cracks. He was told to go on a gluten free diet and
sent home. The gluten free diet was don't eat wheat, oats,
rye or barley. Nothing was said about all the items with
hidden or unsuspected gluten.
Joe got most every complication mentioned in the books.
I've done research at the medical library for over 4 years
and have a bookcase full. Most could have been describing
Joe's case. Joe passed away May 21st and I'm still a basket
case.
There was no gluten challenge nor repeat endoscopy. By 1979
he was totally and permanently disabled. Membranous
glomerulonephritis is a kidney disease that resulted in
dialysis since 1991. As I remember IGg deposits were
mentioned in the biopsy and MGN shares the same DNA as
sprue. I've found it connected in kidney books and gastro
books.
Although treated regularly by internal medicine and
nephrology, Joe wasn't referred to a gastroenterologist
again until 1992. (20 years) The doctors didn't understand
CD but always wrote it on the records. That's about as much
notice as they took to it. The kidney doctor he had last
(his doctor died in March) said he didn't know anything
about sprue and didn't want to know. He said it didn't
matter whether the medicine he prescribed has gluten.
By the way, as you know by now, I'm in the USA. South
Carolina.
I know of one other person with both sprue and MGN. I'm very
interested in the survey. Had hoped to do one. If enough
people with the same problems band together we can approach
the doctors and maybe prevent some things. Brenda
-----------------------
....I want to get all my material organized. I
have notebooks entitled Neurology, Bones, Dermatology,
Kidneys, Pulmonary, etc to the tune of 21 2" notebooks. I
also have 17 notebooks which are only part of my husband's
medical records for the last 23 years. What I want to do is
cross reference and have a list of every article I have that
mentions each disease or association. For instance
diabetes.My husband didn't have diabetes but so many
articles mention it and diabetics (according to a Lifeline
article) are 50 times more likely to get CD. Some of the
article titles speak for themselves. For instance:
"Degeneration of the central nervous system associated with
Celiac Disease"Journal of the Neurological Sciences-53(1);
9-22;Jan 1982 and "Ulceration of the small intestine
complicating celiac disease" American journal of digestive
diseases; 18(9); 820-4; Sept 1973. Etc, I have a 3" notebook
as an INDEX. Other articles will take more time. For example
"Acute abdominal complications of coeliac disease"; Scan
Journal of gastroenterology; No 10; pages 843-6; 1975. I
don't want to scare anybody into thinking that they will get
these complications but to make them aware of how serious
untreated celiac disease can be and how important to stick
to the diet. My husband wasn't treated or followed up when
he was diagnosed in 1972. He stayed on the GF diet as well
as we knew the diet. There was much we didn't know until
many years later when he was so sick. I feel sure milk, eggs
or something else may have needed to be avoided but we
didn't even know that was a possibility. Also I think that
if we can find out how common some of these associations are
doctors will become more familiar and take it more
seriously. Not only gastro but doctors in other specialties.
To quote one of the articles I read (or maybe the book,
Coeliac Disease published in 1984 and written by Cooke) said
that Celiac patients can present in virtually any clinic in
the hospital because the symptoms are so varied and
sometimes the other symptoms show up before or in place of
the gastro symptoms. Diarrhea was not one of my husband's
original complaints. His was weight loss and fatigue. He was
well before he went to Thailand-in fact entered completed
and won second place in a 400 mile bicycle race put on by
the base and strictly voluntary within a year of going to
Thailand. He was never well after he came home. Brenda
---------------------------
....In all the
medical research I did I ran across Thailand mentioned
several times as a place where it is previlent (?). Don't
people in Thailand eat an oriental diet? I'm curious as to
whether celiac disease is either caused by a virus or
manifests itself more frequently after a trip overseas. I
also read a case history of a woman who took a world
cruise.Everybody got sick and got diarrhea. Everybody got
well except this one woman. They diagnosed tropical sprue
but the doctors at home said nontropical (celiac). I have
lots of questions athough I have a bookcase full of copies
of medical articles, etc. My husband had lots of
neurological problems. He had no family history and had a
very large family. He was one of 6 boys, his father was one
of 9 and his mother one of 6. Nothing remotely connected to
sprue. His neurological problems, osteoporis, and other
problems were all in the sprue articles I read. When he was
diagnosed in 1972 we were given next to no information on
the diet and he wasn't given any treatment although we found
out years later when we ordered his records that his iron
in 1972 was 21 (normal 85-150). Brenda
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