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Newsletter Roundup
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Compiled by Jim Lyles
We exchange newsletters with several other celiac groups. In this
article I will summarize some of what we've learned from our
newsletter swapping.
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: :
: Excerpts from _Celiac SprueNews_ :
: -------------------------------- :
: April/May 1996 Jan Hill, editor :
: CSA/USA San Diego Chapter :
: 10424 Flanders Cove :
: San Diego, CA 92126 :
:..............................................:
CD-related Articles: In the last 30 years, just over 6,000 papers
have been published on CD. Of these, only 10 were published by
researchers from the United States.<2>
Lentils and Dry Peas are members of the dry legume family, close
relatives of the bean. These are two of the most nutritious foods.
They are a vegetable protein and a complex carbohydrate and contain no
cholesterol or fat. Legumes are low in calories and have more dietary
fiber than any other major food (including vegetables, nuts, fruits,
and grains). Lentils and dry peas fit in well with today's
health-conscious diets.<3>
...............................................................
: :
: Excerpts from the Gluten Intolerance Group of North America :
: ----------------------------------------------------------- :
: newsletter: March 1996 Cynthia Rolette, editor :
: PO Box 23053 :
: Seattle, WA 98102-0353 :
:.............................................................:
More on the Finnish Oats Study: In October 1995, the New England
Journal of Medicine published a study from Finland entitled "A
Comparison of Diets With and Without Oats in Adults with Celiac
Disease", by Esko K. Janatuinen, et al. This study suggests that
oats may be safe for celiacs. But there are several points to
consider:
* The study purposely omitted those with "severe CD", and those whose
CD "relapsed" or whose symptoms worsened. This factor alone might
omit anyone who is symptomatically sensitive to any small
contamination in their diet.
* Both the control group (which ate no oats) and the test group ate a
diet that is not GF according to US standards, as wheat starch was
used in both groups. This makes it difficult to determine if the
equivalent results between the two groups were due to oats being
safe, or due to both groups consuming wheat starch.
* The amount of oats consumed was relatively small, and the time of
the study was relatively short (12 months). Also, oats have less
avenin (gliadin's counterpart in oats) than wheat has gliadin. A
study involving larger quantities of oats, lasting five years,
would be more helpful in determining the toxicity of oats to celiac
patients.
* Research suggests that in some persons with CD it can take over a
year to see the microscopic changes in the small intestine caused
by gluten contamination.
* In the US and Canada, oats may be cross-contaminated by wheat and
other grains in the field, during harvesting, and in processing.
It may be difficult to find a pure source of oats.
The Gluten Intolerance Group of North America recommends that celiacs
completely avoid oats.
[The study involved only adult subjects, so there is no way to know
how children would react to oats. Certainly for children, oats are
NOT advised. We also advise adult celiacs to completely avoid oats,
at least until more studies have been done.--editor]
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: :
: Excerpts from the Houston Celiac-Sprue Support Group :
: ---------------------------------------------------- :
: newsletter: Mar./Apr. 1996 Janet Y. Rinehart, President :
: 11011 Chevy Chase :
: Houston, TX 77042-2606 :
:.............................................................:
_Diabetes Forecast_ is set to publish an article this summer about the
connection between CD and Type I Diabetes.
-=-=-=-=-=-=-
Talk Highlights<4>: The following are highlights from a talk by
gastroenterologist Sheila E. Crowe, one of the medical advisors for
the Houston Celiac Sprue Support Group.
* When someone past the age of 50 is diagnosed with CD, there is a
greater probability of lymphoma and other associated diseases.
* Untreated celiacs are at a higher risk of developing small bowel
lymphoma and adenocarcinoma; but the risk is still quite small.
The risk of developing a "common" cancer such as colon, breast, or
lung cancer is much higher, though not any higher than it is for
non-celiacs.
* For reasons that are not entirely clear, untreated celiacs are at a
higher risk of developing esophageal cancer. It may be related to
certain nutrient deficiencies caused by malabsorption.
* It is extremely important to get a definitive diagnosis of CD in
children. To put a child on a GF diet for life without a proper
diagnosis is a disservice to the child. Other diseases have
celiac-like symptoms. Once you've been on a GF diet, it is much
harder to get a proper diagnosis as a gluten-challenge is required
first.
* If you do not get better on a GF diet after being diagnosed as a
celiac, the biopsy should be reviewed by someone experienced. Dr.
Crowe always looks at the biopsy specimens along with the
pathologist.
* Patients are entitled to their medical records, including actual
tissue slides, to present for a second opinion.
* Pancreas damage can cause symptoms similar to CD. Symptoms of
pancreatitis include pain (sometimes severe), weight loss, fat
malabsorption, and foul-smelling stools. However, the two
conditions should not be confused by a specialist. The correct
diagnosis is important, as management of the two diseases is quite
different.
* Irritable Bowel Syndrome (IBS) is specific to the lower bowel,
occurs more often in women than in men, and is not associated with
anemia and weight loss. However, it can cause diarrhea,
constipation, and abdominal pain (sometimes alternating with
constipation). Blood work, X-rays, endoscopies, and biopsies are
usually completely normal. IBS patients may be sensitive to
gluten, but this is not an immune system response (whereas CD is),
it is a neurohormonal response. IBS patients may have problems
with many other foods. Patients can be incorrectly diagnosed with
IBS when in reality they have colitis, Crohn's disease, or CD.
* Lactose Intolerance [whether temporary or permanent] will not
damage your intestine, will not make you more susceptible to
cancer, and will not make you anemic; however it will make you feel
uncomfortable.
* Celiacs do not normally get reactions to allergy skin tests for
wheat. The allergy reaction to wheat is different from the
reaction of true celiacs to the wheat protein gliadin.
* Many autoimmune disorders seem to be connected with CD, including
Type I (insulin-dependent) Diabetes, Graves Disease, Sjogren's
Syndrome, Addison's Disease, Scleroderma, Chronic Active Hepatitis,
Myasthenia Gravis, Systemic Lupus Erythematosus, and possibly
Rheumotoid Arthritis.
* There are many potential causes of villi damage, including:
radiation therapy, chemotherapy, CD, Crohn's Disease, viral
gastroenteritis, bacterial overgrowth, and immunodeficiency. Also,
there are at least 20 diseases that resemble CD symptomatically.
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: :
: Excerpts from the Westchester CS Support Group :
: ---------------------------------------------- :
: newsletter: April 1996 Sue Goldstein :
: 9 Salem Place :
: White Plains, NY 10605 :
:...................................................:
The "NO-GLUTEN" Solution, by Pat Cassady Redjou, is a cooking guide
for people who are "sick and tired of being sick and tired". Among
other things, it contains recipes for making your own chicken, meat,
and vegetable broth. To order, send a money order for $26.95
(Washington residents should add $1.82 sales tax) to: Pat Redjou, The
"NO-GLUTEN" Solution, Box 731, Brush Prairie, WA 98606-0731.
-=-=-=-=-=-=-
The Social Celiac Course 101: Arm yourself with these coping
techniques when you attend a party:
Chapter 1--Cocktails. When the bartender asks, "What's your poison?"
this may not be so far off. Most hard liquors are likely made from
one of the various grains that celiacs must avoid. There are a few
relatively safe options: most wine, tequila, and rum. Or you can
always opt for GF soda or juice; no one will be the wiser when you
join in on the traditional party toast.
Chapter 2--Hors D'oeuvres. These little critters will most likely be
off your list. Most are wrapped in some sort of dough [or sauce]
that is not likely to be GF. Fresh fruit or veggies may be your
best hope. Better yet, keep a small bag of GF goodies with you to
eat while everyone else stuffs themselves with pigs in a blanket.
Chapter 3--Entrees: This gets a little more difficult, but don't
despair. If you are celebrating in a restaurant, try to speak to
the Chef or Maitre D' and advise them of your situation. If
possible, try to reach them prior to the meal. Remember to stay
away from anything with stuffings, dressings with unknown
ingredients, or fried foods cooked in the same oil as breaded
foods. When dining at a guest's house, offer to bring a homemade
dish to contribute to the meal. Your host will be thankful for the
help, and you will be sure to have at least one GF option when you
eat.
Chapter 4--Dessert: This is the time you may start to feel a little
sorry for yourself. That is, until you see the stuffed look on
your dining companions' faces. While you may opt for fresh fruit
or a light GF Sorbet, they can barely speak or move because they
are so full from that rich chocolate cake. So give yourself a pat
on the back and remember, it's just one less hour on the treadmill
for you at the gym.
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