<<Disclaimer: Verify this information before applying it to your situation.>>
========================= Medical Information
Much medical information is of no interest to celiacs, but articles are a
simple way to explain an issue to a medical professional. These extracts are
handy references to show your physician, in his technical language, what
research has been documented throughout the world. When you encounter a
similar problem or if you have a physician willing to learn from a patient,
share these articles for the benefit of all concerned.
1. Partricia Gillen is The ActionLine's liaison to Cape Canaveral Hospital.
She is the Director of Food & Nutrition Services.
2. Health Hotlines is a free pamphlet from The National Library of Medicine's
DIRLINE Database. For copies contact: DIRLINE Information, Specialized
Information Services, National Library of Medicine, Bethesda, MD 20894. The
pamphlet is a compilation of organizations with toll-free telephone numbers.
3. Dietitians: At the 77th American Dietetic Association, our Orlando staff
observed several knowledgeable dietitians at the Ener-G Foods and Dietary
Specialties booths. Most were interested in the low protein products, but
several talked about their celiac patients. Please continue to educate your
local dietitians about the GF diet.
Several celiacs groups have improved dietitians' knowledge by enlisting their
support at meetings or designating them as medical advisors. We can improve
their knowledge through our experiences and by working with them and their
celiac patients. Every knowledgeable person in the medical profession is a
wonderful resource that should be utilized.
4. Antiendomysial Antibodies Tests approach a specificity of 100 percent in
diagnosing CD (i) in one study.
Additional Laboratories for the Celiac Serology Tests: Last year, The
ActionLine, mentioned Specialty Labs as one place that performs multiple tests
and maintains a proficiency in evaluating the blood samples. Two additional
sources are the hospitals with Celiac Clinics.
Immunopathology Laboratory, Dept. of Pathology, 5233 RCP, University
of Iowa Hospitals and Clinics, 200 Hawkins Drive, Iowa City, IA
52242. Their standard procedure is to bill the physician/clinic or
hospital. Charges for the tests are available on request by calling
: (319/356-2688/8470 ). Please send the following two items: 1) at
least 2 mls of serum in a leak proof plastic tube with a secure
stopper. Have your physician draw a tube of blood, allow it to
clot, centrifuge, and send only the liquid portion. Do not send
the whole blood or plasma. The tube should be labeled with the
patient's name and social security number (to serve as a second
identifier) and 2) a written request or order form for celiac
serology panel which should include a) patient name b) date of birth
c) social security number d) physician/clinic/hospital name and
address. It is essential to submit the date of birth as normal
values vary with age.
Pediatric Gastroenterology & Nutrition Laboratory, UMAB/Bressler
Research Building, Room 10-047, 655 West Baltimore Street,
Baltimore, MD 21201, Attention: Karoly Horvath, MD or Athba Hammed,
Research Asst. They offer antigliadin IgA & IgG together with
antiendomysium antibodies in their panel. The submittal procedure is
similar to that stated above and requires about 0.5-1.0 ml of serum
which amounts to about 2-3 ml of blood. Written information is
available by calling (410) 706 1997 or Fax (410) 328 1072.
5. American Autoimmune Related Disease Association, Inc. publishes a
newsletter and is involved in the promoting of public awareness of the 80
known autoimmune diseases. For further information write to the organization
at 15475 Gratiot Avenue, Detroit, MI 48205, (313) 371-8600.
6. MED-LINE is one of the databases at the National Library of Medicine. A
database query shows journal article references on a specific topic. Anyone
may request an ID and will be charged based upon the duration of a search.
The libraries in Broward and Dade counties of Florida offer access to MED-
LINE. Other libraries may offer this service.
7. Research News: The NIH awarded some celiac research grants. They were
to: Martin Kagnoff - University of California, Intestinal Immune System in
Host Environment Interaction; Martin Kagnoff , Activation of Celiac Disease by
Gliadin Peptides; Joseph Michalski - University of S. Alabama, Genomic Screen
for NonHLA-Linked Genes in CD; Sandra Rosen-Bronson - Georgetown University,
Molecular Analysis of the Pathogenesis of CD.(ii)
8. Recent Medical References :
Cabanne F, Vazquez H, Fiorini A, et al. 1994. Serological markers
identify historically latent celiac disease (CD) among first degree
relatives. Gastroenterology: 106&A227.
Catassi, B. et al. 1994. Coeliac disease in the year 2000: exploring the
iceberg. The Lancet. 343:200.
Gobbi, G. et al. 1992. Coeliac disease, epilsey, and celebral
calcifications. The Lancet. 340:439.
Goudie, R.B. and F.D. Lee. 1991. Coeliac disease and lymphoma. The
Lancet. 338:570. (Responds in short note to Wright et al.)
Holm, K. et al. 1992. Intraepithelial gamma delta T-cell-receptor
lymphocytes and genetic susceptibility to coeliac disease. The Lancet.
339:1500.
Jansen, T.L. Tha. A., C.G.J. Wagenaar, and C.J.J. Mulder, 1991. Coeliac
disease and lymphoma. The Lancet 338:318 (Interesting distribution of CD
diagnosis vs. age. Responding to Wright et al. 1991. Wright's response
follows.)
Kelly, C. and F. Graeme-Cook, 1994. A 74-year old women with worsening
chronic diarrhea, weight, loss, and abdominal pain. The New Engalnd
Journal of Medicine: 331:383.
Logan, R.F.A., E.A. Rifkind, and A. Ferguson, 1988. Mortality risks in
celiac disease. (abstract) Gastroenterology 94(5)
Logan, R.F., et al., 1989. part 2 Mortality in celiac disease.
Gastroenterology 97:265-271.
Molteni, N., M. Bardella, and P Bianchi, 1990. Obstetric and
gynecological problems in women with untreated celiac sprue. J Clin
Gastrolenterol: 12(1):37.
Moroz, C., H. Marcus, I. Zahavi, and G. Dinari, 1988. Is coeliac disease
a premalignant state? The Lancet: 2:903-904.
Rubesin, S.E., H. Herlinger, S.H. Saul, K. Grumbach, I. Laufer, and M.S.
Levine, 1989. Adult celiac disease and its complications. RadioGraphics:
9:1045-1066. (Histological comparison of normal and CD mucosa)
Sher, K. S., et al., 1994. Infertility, obstetric, and gynecological
problems in celiac sprue. Digestive Diseases: 12:186-190.
Straker, R.J., S. Gunasekaran, and P.G. Brady, 1989. Adenocarcinoma of
the jejunum in association with celiac sprue. J. Clin. Gastroenterol:
11:320-323. (cites Holmes et al. 1976 saying that gluten-free diet did
not protect against the development of small bowel malignancy.)
Sturgess, R. et al., 1994. Wheat peptide challenge in coeliac disease.
The Lancet: 343:758.
Troncone, R. and S. Auricchio, 1991. Gluten-sensitive enteropathy. Food
Reviews International: 7:205-231. (Review and discussion of a-gliadin's
role.)
Trier, J., 1991, Celiac Sprue. The New Journal of Medicine: 325:1709
Wright, D.H., D.B. Jones, H. Clark, G.M. Mead, E. Hodges, and W.M.
Howell, 1991. Is adult-onset coeliac disease due to a low-grade lymphoma
of intraepithelial T lymphocytes? The Lancet: 337:1373-1374.
9. A Study on the Enamel Formation of celiac children teeth is underway by
Dr. Charles Shuler, DDS, School of Dentistry, USC Center for Craniofacial
Molecular Biology, LAC/USC. Dr. Shulder is interested in obtaining baby teeth
from celiac children or their brothers and sisters. Just send teeth that have
fallen out to Dr. Shuler with the child's name, age, sex of the child, and if
the tooth is from a celiac or a brother/sister. Mail to CDF, 13251 Ventura
Blvd., Ste 3, Studio City, CA 91604-1838. Thanks to CDF for this information.
10. Hospital Meals: Several celiacs recently survived the food served in
hospitals. Their recommendations are: be proactive and aggressive about your
meals, bring a family member to verify your meals, ask the dietitian what GF
items can be brought from home to supplement the hospital selections, and
demand substitutions when items are unacceptable. Whenever possible, these
subjects should be discussed with the hospital dietitian and Executive Chef
before your admission to the hospital. The support of the Executive Chef is
critical in determining GF preparation methods and obtaining substitutes for
menu items. Remember to verify during the Hospital Admission that your
hospital ID bracelet includes the requirement for the GF diet.
11. Potential Psychopathology Due to Gluten is another area in which there
has been consideration discussion about the adverse effects of gluten and
limited scientific studies. This one study may initiate some interest in
follow-up research or limited GF trials of patients.
A double-blind control trial of gluten-free vs. a gluten-containing
diet was carried out in a ward of a maximum security hospital: 22
male patients (aged 23-59 years) were studied for 14 weeks. Most
suffered from psychotic disorders, particularly schizophrenia.
Various dimensions of behavior were rated on the Psychotic Inpatient
Profile (PIP) at different stages. There were beneficial changes in
the whole group of Ss between pretrial and gluten-free period in
five dimensions of the PIP, maintained during the gluten challenge
period; these changes could be attributed to the attention the Ss
received. Two Ss improved during the gluten-free period and relapsed
when the gluten diet was reintroduced.iii
12. What should a parent do when a celiac child knowingly ingests gluten?
The decision to induce vomiting in anyone who has ingested a potential problem
substance is based on the substance and the potential or expected effects of
the ingestion. In short, if you know the kid is going to get really sick with
several days of severe illness, then immediate induction of vomiting with a
pediatrician prescribed method may be justified (never use salty water). If
the effects of the gluten are short and relatively mild, then it's probably
better to ride out the effects of the ingestion. Discuss it with the kids'
pediatrician, as there are some kids who are at risk for aspiration with
vomiting. (iv)
13. Infections:
Celiac patients may be prone to certain bacterial infections, This
risk relates to functioning of the spleen that may be defective.
The spleen is important in the response to certain bacteria
especially pneumococcus. Older celiacs should discuss with their
physician about whether they should get Pneumovax which might help
protect against this type of infection. Another situation is IgA
deficiency . . .in one type of antibodies which affects about 2-3 %
of celiacs. The presence of this antibody defect can make that
individual more susceptible to infections. It can be detected by
measuring the level of IgA in the blood . . . . Affected
individuals . . . have a greater chance of giardia infections in the
bowel that can cause celiac like damage (usually less severe and
mostly short term).(v)
14. Celiac Disease as Two Distinct Entities:
. . . (abortive and permanent) based upon the occurrence of large
granular lymphocytes and natural killer cells within the epithelium
of the gut . . . Those in the permanent group developed a
significantly more pronounced flat mucosa after gluten challenge or
provocation compared with the abortive group.(vi)
The result of our long-term study of patients with coeliac disease
has confirmed what gastroenterologists have repeatedly advised over
the years - that is, that patients with permanent coeliac disease
must be maintained on a life long strict gluten free diet.
Unfortunately, adherence to such a diet is not popular with teenage
patients. It appears from our study that the patient's attitude
toward such a diet is almost always determined by the type and
severity of the disease. Those with permanent coeliac disease have
perceived that they have to adhere to a strict diet. Non-adherence
resulted in severe weight loss, recurrent diarrhoea and anemia. Our
study also revealed that all abortive coeliacs patients who
deliberately decided not to follow our advice to maintain a strict
gluten free diet have remained, nevertheless, clinically
asymptomatic (normal weight:height index, normal bowel movements, no
anemia, and negative antigluten antibody titres) during the entire
follow up period of 15 years. The presence or absence of antigluten
antibodies, particularly IgA, in the serum of patients is an
additional marker which indicated whether or not there has been
dietary compliance . . . None of our patients, all of whom were
older than two years of age, had a normal intestinal mucosa after a
challenge with gluten; however, the mucosa changes in patients with
the abortive form of the disease were less severe compared with the
pathological changes seen in those with the permanent form of the
disease . . .
The question that remains to be answered is why patients with
permanent coeliac disease develop a flare up during gluten
provocation while those in the abortive group are more resistant to
the toxic effect of gluten? (vii)
15. Varying Amounts of the intestines are affected in celiacs. It can be the
entire gut or portions (patches). This may be one of the reasons for a missed
diagnosis or varying symptoms in patients.
16. Oral Contraceptive Steroids (OCS)
are well absorbed in humans from the gastrointestinal tract. However,
while the progestogens are almost completely bioavailable,
ethinylesteadiol (EE2) is subject to extensive first pass metabolism
consisting chiefly of conjugation with sulfates in the gut wall. Both
EE2 and progestogens are well absorbed in patients with an ileostomy or
with disease such as cystic fibrosis or Crohn's disease. However, in
patients with celiac disease (gluten-sensitive enteropathy) the gut wall
is less able to conjungate EE2 and thus its bioavailability is
increased. The bioavailability returns to control values as the disease
is improved following gluten withdrawal. Other drugs that are
conjugated with sulfate, such as vitamin C and paractamol, compete for
available sulfate when coadministered with OCS leading to high plasma
levels of EE2. (viii)
17 Calcium Loss has historically been a problem for celiacs. Several
discussions about foods and their effect on calcium have been published. It
was believed that coffee contributes to bone loss. A recent study by Tufts
University indicates that high intakes of calcium can be a mitigating factor
for coffee drinkers. The study on nonceliacs reports that women who consumed
an average of 800 mg of calcium did not loose bone mass no matter how much
coffee they drank.
18. Starch in Medicines must be investigated. Unlike starch in food which
must be corn starch, in medications it can be any carbohydrate.
19. Dermatitis Herpetiformis (DH) is treated by avoidance of gluten in the
diet. This is the new standard of treatment in the rest of the world.
20. The GF Diet can be deficient in fiber. These GF items are fiber rich
foods:
Grain Vegetable Fruits
Rice Bran, Brown Rice, Peas, Snow Peas, Potato Apple, Pear, Figs,
Rice Polish, Wild Rice, with skin, Sweet Prunes, Apricots,
Corn Bran, Soy Flour, Potato, Beets, Raspberries, Mango,
Corn Germ, Whole Bean Corn/Popcorn, Corn, Blueberries, Rhubarb,
Flour Spinach, Green Beans, Blackberries, Banana,
Broccoli, Rutabaga, Strawberries, &
Carrots, Mushrooms, Nectarines (ix)
Brussels Sprouts
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