<<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. Flu Shots should be considered in October or November. Your physician
can advise if the shot is appropriate for your medical condition.
2. The Management of the Well Patient with Stable Celiac Disease by Dr.
Joseph A. Murray, University of Iowa.
1. Adherence to gluten free diet for life. The less frequent
transgression the better.
2. Good nutrition emphasizing carbohydrates, calcium, adequate
calories, and protein.
3. Micronutrients as part of the diet and probably a safe
multivitamin with 100% of RDA of B-complex, iron, folate, and
other vitamins and minerals. Avoid maxing out on any one
vitamin.
4. Adhere to general cancer screening recommendations, monthly
breast exams, mammograms and pap
smears. Prostate check for men over 50 years.
5. Strategy for managing bone calcium (skim milk 32 oz. per
day); vitamin D if deficient. Consideration for hormone
replacement therapy post-menopausally.
6. Awareness of related illness, neuropathy, lupus, diabetes,
thyroid disease (still low risk).
7. For DH patients the goal should be gluten free diet as the
sole management with a decreasing need for
dapsone or other drugs.
8. DH patients using these drugs need to have their blood
tests monitored for side-effects.
9. Physical exam every year including stool hemoccult testing.
10. Blood tests: gliadin or endomysial antibody levels should
fall and become negative on the gluten free diet. Follow-up
tests of any that were abnormal should be done. Blood count
and chemical panel are often done.
11. Cholesterol may rise after treatment.
12. Special strategies are needed for poorly responding cases.
13. Some advocate follow-up biopsies to normality and then
every 5 years to assure continued healing.
3. How to Talk to Your Doctor, The Questions to Ask, by Dr. Janet R. Maurer,
is an informative discussion of the patient-physician relationship.
Through knowledge of this relationship, the patient can improve the
process. Dr. Maurer's book is easy to read and explains the various
subjects in medical terms. The major chapters are: common illness,
medications, test procedures, the role of the specialist,
hospitalization, and when to consider changing doctor. Sample questions
in each chapter explain what to ask and how the physician may respond.
The National Coalition for Cancer Survivorship publishes. This is
similar to Dr. Maurer's book and is directed toward appropriate questions
for cancer patients.
Interviewing Your Physician is the subject of the by Dr. Wayne Sribnick.
These techniques can be used in your search for finding a physician
suited to your personal needs.
4. Laboratory Blood Test Values for Specialty Laboratories, Inc. antibody
tests. These noninvasive blood tests are very useful in the diagnosis
and follow-up of CD and DH in patients. A complete description of the
tests is available in the November 1993 and January 1994 issues of The
ActionLine. Positive results are only shown for those undiagnosed or
when a celiac is off the GF diet. Results of tests and their reference
range are:
Test: Test: Test:
EIA (Enzymatic Immuno- IFA (Immuno-Fluorescent IFA
Assay) Antibody Assay)
Results:
Results: Results: less than 1:10 titer
less than 10 EIA units less than 1:5 titer normal
Negative normal greater than 1:10 titer
10-15 EIA units greater than 1:5 titer abnormal greater than 15
indeterminate abnormal EIA units positive
5. Absorption of Antibiotics or any medicine in adult celiacs is an item
that can be overlooked. Celiacs report various responses to gluten
These reactions can occur within hours, days or for some no symptoms may
appear. If a biopsy were taken, it is likely that damage would be seen
in all. The area of damage villi may also vary between celiacs. It is
known that persons with damage to the first (proximal) part of their
small intestine tend to absorb larger molecules and malabsorb smaller
molecules, while the reverse is true in persons without damage to this
section.'' (ii)
6. If medication is not giving the expected results; the status of the diet
and absorption may be a factor to consider. An old screening test of
normal subjects and celiacs with no indication of cardiovascular, liver,
or kidney disease showed the following results for drugs excreted in the
urine.
an increased absorption of: cephalexin, clindamycin, fucidin,
sulphamethoxazole, and trimethoprim
an impaired absorption of: amoxycillin and pivampicillin
a delayed absorption of: rifampicin
normal absorption of: ampicillin, erthromycin, ethyl succinate,
erythromycim sterate, and lincomycin. (iii)
7. Research Funding for celiac disease and dermatitis herpetiformis is
minuscule. Without research, we can never expect a thorough
understanding of the disease and the effect upon our body. Since CD is
perceived as `foreign'* or a disease that is never seen outside of
medical school by many doctors; there is limited expectation that the
time from onset of symptoms to diagnosis can be reduced. Additionally,
those without classical symptoms may remain undiagnosed for many years.
Research grants are given to those problems that have a possibility of
developing a commercial product or national visibility. A normal grant
procedure is the submission of previous research in the planned area to
show the direction that the proposed study will undertake. These facts
and the membership of the review panels may effectively direct funds to
other areas.
During periods of tight budgetary restraints, new additional obstacles
to overcome in their search for funding sources. The process is
extremely difficult, but without personal contact between each celiac
family and their Representative and Senator; celiac research funding
may never increase.
Small segments of the population find that it is impossible to raise a
voice and be heard by elected officials. This is not always the case.
Lyme disease affects 10,000 people and they presented their case to the
Labor and Human Resource Committee and requested funding for research.
The ActionLine proposes that each individual use every letter to elected
officials or personal contacts as a vehicle for explaining our cause. We
must request recognition and funding of celiac disease through research
facilities of The National Institute of Health. Individual letters with
your experiences may result in a response from Congress. Our horror
stories can evoke a response.
8. As mentioned in the July issue and on the last page of this newsletter,
Dr. Joseph Murray has established a foundation at the University of Iowa
for celiac research and would effectively use any donations.
* Foreign is used to denote publication of medical papers in foreign
publications. Items not discussed in US magazines imply a negative
applicability of the disease and doctors may perceive it as a condition
not affecting their patients.
9. Reference Material is helpful when talking with your physician about
secondary problems associated with CD. This is especially true of
parents, who must overcome a perception of parental interference from
physicians. One mother recently used Dr. Michael Marsh's book, , to
inform a physician and change a diagnosis.
10. Celiacs with Diabetes should take into consideration the absorption
difference between rice flour and other grains. Insulin requirements are
affected by the carbohydrate consumed by the diabetic. Traditionally,
carbohydrate equivalency lists have been derived from grains that are
avoided by celiacs. ``The absorption of rice flour carbohydrate was
close to 100 per cent as compared with an absorption of 80 to 90 per cent
commonly consumed carbohydrates such as wheat, rye, oats, and barley. iv
This difference may require diet or medication change to maintain the
correct diet, exercise, and insulin balance.
11. E-Z-EM's Readi-CAT-2, Barium Sulfate, protein status is open to
discussion. The company reports that the product contains no wheat, rye,
oats, or barley in the vegetable gum or natural flavoring. The natural
flavoring is orange flavor. The company is unable to report if this is
pure oranges or an extract in a possible gluten solution. They recommend
celiacs use item P-410, which does not contain any flavoring. Their
phone number is (800) 544-4624.
|
