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Saturday's Report, Oct. 5, 1996
CSA/USA Conference in Dallas, Texas
submitted by Mary Courtney, [log in to unmask]
Here's my review of the day, followed by a summary of the most
medically useful session, Dr. Gebhard's "When Celiac Symptoms Recur."
Quick note to local celiac newsletter editors: Please feel free to
include my summaries in your local publications. Simply drop me an
email request, give me a byline (credit), and, if you would be so
kind, I'd like to receive that copy of your publication.
Good news: Dr. Martin Kagnoff will be the Keynote speaker at next
year's CSA conference in Seattle.
Food news: Leon Rottmann announced that 17 of 31 companies have
admitted to using French fries with a wheat-starch coating. He
mentioned McDonalds as one with this problem, but CSA had to find out
by analysis, since Ronald McDonald wouldn't comment. While the gluten
content is below the 5% level in molecular weight, the conservative
recommendation is to abstain from French fries with wheat-starch
coating. (For another food note, see the enriched rice note below.)
About Saturday Morning:
Of the three morning sessions I attended, only Dr. Fine's "Overview of
Current Research" is worth summarizing. (I'll finish and post that
summary after reviewing my audio tape.) The canned FDA presentation
did not even approach the concerns of persons with CD. The Plant
BioTech presentation from Monsanto was good PR for that industry and a
good overview of plant gene splicing. (I can't wait to try it at
home!) One general session speaker on new foods was a no-show.
Saturday Afternoon:
My afternoon began with an hour of immunology lecture that had not
been adequately modified from its med school slide show origins. I
stuck it out, but it sent many folks out of the room. Read on:
Luckily I'd chosen to attend the session featuring George Reis, the
Marriott culinary artist (executive chef) who had recently given
himself a crash course in GF cooking. The session was like hearing
from a delightful person who had just been on a cross-cultural
exchange program. We were laughing and clapping at everything he said,
but then, he'd already fed us several very tasty and attractive GF
meals, so we were a biased audience. When I write up my people
profiles, I'll include one on Chef George. Do note that he discovered
that some enriched rice is soaked in barley husks as part of the
niacin-enriching process. He chose to buy organic basmati (and
Texmati) rice for our meals.
Speaking of terrific people, (and that's an important part of this
experience that I hope to share) I was fortunate to have a visit with
Janet Rinehart today, as well as Bette Hagman. I hope to soon relay
those experiences with fellow celiacs.
Finally--and here's where we come to today's summary--I heard Dr.
Gebhard's talk "When Celiac Symptoms Recur" which was well-organized,
designed for informed lay persons, and full of answers to questions
still stuck in my head from reading posts on the Celiac Listserv, such
as "What other ailments cause chronic diarrhea?" and "Are there other
diseases that cause malabsorption?" It made me appreciate how many
questions and issues we bring up on the Net.
____
"When Celiac Symptoms Recur"
Roger L. Gebhard, M.D., Gastroenterologist,
Division of Gastroenterology, Univ. of Minnesota;
Staff Physician, Minneapolis V. A. Med. Ctr.
Dr. Gebhard serves on the CSA Medical Advisory Board.
Summary:
Dr. Gebhard outlined four reasons that symptoms recur in celiacs who
have started a gluten-free diet (GFD). Then he listed other causes of
flat mucosa and complications of CD. First the recurrence of symptoms:
DIETARY NONCOMPLIANCE
Sometimes intentional due to frustration or due to being wrongly told
that you outgrow the diet. Some people think that "small amounts don't
seem to matter." Dr. Gebhard cited a study that showed that height,
weight, and blood hemoglobin was lower in those that did not comply
with diet.
Sometimes noncompliance is accidental because of:
New foods
Manufacturing processes (like fries cooked in gluten-y oil)
Changes in manufacturing (puff rice produced on a puff wheat line)
Letting down one's vigilance (the label changed!)
Being uninformed (HVP is What?!)
LACTOSE
(Milk sugar that requires the enzyme lactase for digestion. Lactase
normally lives on the end of our villi. If villi are damaged (flat);
then undigested lactose moves through the gut. Bacteria makes
short-chain fatty acids out of the lactose, causing unpleasantness. Oh
boy.)
Likely victims:
Celiacs with unhealed guts. (Try lactose again about 6 months into
GFD; meanwhile, find other calcium sources.)
Persons who are getting on. The handy enzyme lactase decreases with
age.
INTERCURRENT ILLNESS, such as:
Antibiotic diarrhea (diarrhea when you take antibiotics)
[Note that other medicines can also cause diarrhea.]
Infectious diarrhea (from virus, bacteria, or parasite)
Spastic bowel (syndrome due to bowel wall having altered contractions.
20% of people have some experience with this, such as during times of
stress.)
Diabetes (can be reason for diarrhea)
Pancreatic insufficiency (nutritional damage to pancreas gland; causes
maldigestion)
Bacterial overgrowth (sounds like my fridge)
VITAMIN DEFICIENCY
Deficiency of Folic Acid, Vitamin B-12, and other B vitamins can cause
diarrhea.
VITAMIN OVERDOSE
Too much Vitamin C, Niacin, and Magnesium can cause diarrhea.
Dr. Gebhard on Unrealistic Expectations:
Persons with true spastic (irritable) bowel syndrome cannot expect it
to be cured by the gluten-free diet.
One's growth may not "catch up" on GFD.
One's weight may not increase substantially on GFD. "Some people may
be constitutionally slight."
OTHER CAUSES OF FLAT MUCOSA
Viral gastroenteritis or giardia
Bacterial overgrowth, scleroderma
Agammaglobulenemia (Absence or deficiency of gamma globulin, an immune
system player; thus one has a tendency to infection)
Lymphoma
Whipple's disease (something treated with antibiotics)
Allergic gastroenteritis
Radiation
Tropical Sprue
For more information, whip out your medical references. Just beware of
"Medical Student's Disease!"
COMPLICATIONS OF CELIAC DISEASE
Another list:
Refractory Sprue (CD folks who do not improve on GFD, or who had some
initial response, but then become symptomatic)
Collagenous Sprue (Collagen is connective tissue. Here, it forms a
lining that creates a barrier to the transport of nutrients. Persons
with Collagenous Sprue have no positive response after starting GFD.)
Neoplasia (Lymphoma of GI tract, or Carcinoma)
Lung Fibrosis
Small Bowel Lymphoma (uncommon and may mimic CD)
For many celiacs who experience celiac symptoms while on the
gluten-free diet, Dr. Gebhard advises:
Review Diet
Review Diet, and . . .
Review Diet.
Then, if you're still at a loss, go get assessments of your
nutritional status and absorption. (He suggests we have a baseline on
file.) Of course there's always the threat of a re-biopsy to keep our
detective skills sharpened.
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