<<Disclaimer: Verify this information before applying it to your situation.>>
Friday's Report, Oct. 4, 1996
CSA/USA Conference in Dallas, Texas
submitted by Mary Courtney
Sessions attended on Friday:
1. Kenneth Fine, M.D., <What's Old and What's New>
2. Steven J. Kingsbury, M.D., Ph.D. <<Living with a Chronic Illness>
3. C. Robert Dahl, M.D., <Genetic, Immunological and Environmental
Factors of Celiac Disease>
4. Lawrence R. Schiller, M.D., <Question and Answer Session: Celiac
Disease in Adults>
Please Note: In the interest of time, I will limit my reports to
material other than what is covered in introductory talks on CD.
Summaries of introductory talks on CD may be found in the Celiac
Listserv Archives.
--------------------------
Kenneth D. Fine, M.D., Gastroenterologist,
Baylor Univ. Med. Ctr, Dallas, and Dallas VA Med. Ctr.
Dr. Fine is Medical Advisor for the Dallas/Fort Worth Chapter of CSA.
<Celiac Sprue: What's Old and What's New>
1. Review: The educational sessions of the CSA conference got off to
a good start with Dr. Kenneth Fine's presentation. After taking us
through the historical hallmarks of coeliac/celiac disease, Dr. Fine
defined and described CD in a clear way without oversimplifying. Most
interesting to celiacs who've already had CD 101 was Dr. Fine's
research findings on the causes of diarrhea occurring in celiacs who
conform to the GF diet.
1. Summary: Dr. Fine gave one of the best <History of Celiac>
presentations ever, because he went into detail. He corrected the myth
that says no one knew about the wheat connection until after World War
II (when the Dutch celiacs had access to bread after going without it
and, subsequently getting better). Actually, Dr. Dicke had been
studying CD in the 1930s and had recommended a wheat-free diet by
1941.
Dr. Fine's description of CD was noteworthy for his likening a healthy
gut's absorbency to that of a terry cloth towel. He also described
digestion in order to contrast it with absorption. In digestion,
enzymes break down the chain-like structure of food. Then (and only
then) absorption can take place.
Besides covering symptoms, diagnosis, pathology, and treatment of CD,
Dr. Fine discussed Latent CD <Family members without symptoms should
consider taking the antibody test> and Refractory Sprue where some
celiacs don't improve (or relapse) on the GF diet. Here's where it got
interesting because, Dr. Fine's specialty is diarrhea. There are three
causes for diarrhea after a celiac has been on a GF diet:
1. Inadvertent or intentional ingestion of gluten;
2. Sensitivity to dietary agents other than gluten (e.g., eggs, fish,
milk protein for children);
3. Another condition exists and needs diagnosis. (read on)
Dr. Fine has just submitted a paper on this subject, <Prevalence and
Causes of Chronic Diarrhea in Treated Celiac Sprue>, to the medical
journal, _Gastroenterology_.
Diarrhea is the symptom which most often recurs after CD diagnosis and
GFD treatment (17% of those surveyed). Briefly, Dr. Fine found ten
conditions that can cause diarrhea after a celiac is on a gluten-free
diet. In a study of celiacs with diarrhea occurring more than three
times a week, he found that Carbohydrate Malabsorption (including
lactose and fructose problems), Microscopic Colitis, Irritable Bowel
Syndrome (alternating constipation and diarrhea), Pancreatic
Insufficiency (not enough enzymes), Fecal Incontinence, and one celiac
with signs of gluten ingestion. Interestingly, the last one was the
person with the least diarrhea.
Other conditions that can cause diarrhea include: DH, Diabetes
Mellitus Type I, IgA Nephropathy (a kidney problem), Selective IgA
Deficiency, a variety of autoimmune disorders (affecting liver, joints
and tissues, or thyroid), malignancy (cancer) such as Pancreatic
Carcinoma and Intestinal T-Cell Lymphoma.
When asked about the use of coricosteroids in treatment of CD, Dr.
Fine explained that they paralyze lymphocyte cells that cause celiac
reactions, but that there are long-term side effects (e.g., to bones).
To read about microscopic colitis, see Dr. Fine's chapter on diarrhea
in a GI textbook by Sleisenger and Fordtran, available at any medical
bookstore. If you suffer from this condition, you might want to
contact Dr. Fine about a treatment that seems to be working well. He
is at Baylor University Medical Center in Dallas, the Division of
Gastroenterology and Gastrointestinal Research.
-------------
Steven J. Kingsbury, M.D., Ph.D., Psychiatrist/Psychologist,
Department of Psychiatry, Dallas VA Med. Ctr.
Dr. Kingsbury is Asst. Dir. of the Schizophrenic Research Program,
studying the most common chronic illness. In addition, he lives with
Multiple Sclerosis (MS).
<Living With A Chronic Illness>
2. Review: Dr. Steven Kingsbury is an inspirational person and a
fascinating speaker. Having struggled (much like many persons with
celiac disease) to get the correct diagnosis for his chronic illness,
Multiple Sclerosis (MS), Dr. Kingsbury shared his experiences and his
insights on self-efficacy, on choosing what to do with your life, and
on selecting a physician.
Summary: Many celiacs have a story about trying to get diagnosed and
being pooh-poohed by medical professionals. Dr. Kingsbury had a
similar experience while he was in medical school, where he was told
that he had <medical student's disease> (from reading about illnesses
and then thinking that you have them). Because he was persistent and
learned to be in charge of his health care, he finally got the tests
he needed and got diagnosed with MS, beating the 6-year average time
that it takes to get the correct diagnosis. [There are similar, if not
higher, averages for celiacs.] Like undiagnosed persons with CD, those
with MS are often thought to have psychiatric problems rather than a
physical complaint. Dr. Kingsbury's advice to physicians is that when
they can't find something and are tempted to think that it's a
psychiatric problem, they should remember that psychiatric conditions
are diagnosed by the PRESENCE of positive findings, not by the ABSENCE
of findings.
There was nothing <Pollyanna-ish> about Dr. Kingsbury's common-sense
platitudes:
Physicians can help or squelch.
Learn to handle condescending M.D.s, M.D.s who don't take your
condition seriously, and poorly educated M.D.s. We need to be in
control of our life in general, and our disease.
Positive Thinking is Not Enough.
Most importantly, he talked about learning to maintain his sense of
self-efficacy, as he put it, <my own sense of my actions, thoughts,
feelings, and ability to feel in control of my life.
And in many ways do what I want to do, not just in relation to my MS,
but in relation to my life in general.>
One of his lessons was coined by a recipient of the American
Psychological Association's Lifetime Achievement Award who worked with
persons with chronic pain.
Fordyce's Law:
<People suffer less when they have something better to do.>
Dr. Kingsbury applies this law by doing work that he enjoys and which
engages his mind and intention (which is fortunately compatible with
his need for a sedentary lifestyle). He exercises within prescribed
limits, and follows his treatment protocol.
The Deadman Rule:
<Never have as a goal something a dead man can do.>
This is a matter of framing your goals in a positive way. For a celiac
example, a dead person is capable of following the goal: <Don't Eat
Gluten>. So, instead, set positive goals (which will offset the
feeling of being deprived). Ask yourself: What do I want to do instead
of having gluten? [This might include goals such as <Prepare some
interesting Rice Dishes.> or <Find a source of rice pasta.>]
On the danger of <becoming your disease>, Dr. Kingsbury advises:
<Expand your choices.>
You have the choice of paying attention to your ailments (which may be
useful in monitoring your illness). You can find ways to <trick>
yourself, by bringing MORE into your life, such as engaging in
interesting activities and researching your treatment.
His advice included affiliating yourself with the best doctors you
can, and the best support system people you can. He described his
spouse as being able to push him when he needed it (not necessarily
when he wanted it) and to help him cope with stress.
Then came his gentle diatribe about <denial> and the other components
of theories about the stages of grief. Essentially, if someone expects
you to get depressed, angry, etc., about your chronic illness, you
have his permission to get angry with them. Not everyone experiences
theoretical stages of feelings. If someone isn't doing well with their
treatment, then yes, they need active assistance with how they might
be feeling.
About stress:
Dr. Kingsbury believes that he functions under less tension because he
is doing things he does well. By controlling stress, he boosts his
immune system. When under stress, relaxation isn't enough. When you
can't just avoid stress, you need to learn to recognize it, identify
its causes, take steps to modulate it (problem solving skills), and
learn to relax and <handle it> when a stressor can't be fixed. Dr.
Kingsbury cited an amusing rule for interns to follow when they're
working in a cardiac arrest situation: Take your own pulse first.>
Another medical rule that applies to laypersons:
<When in doubt, get a consult.>
Another reminder: <Don't blame yourself for the disease.> As his MS
worsens, Dr. Kingsbury reminds himself that none of the worsening is
his fault. Forget the self-blame. Despite believing in yourself,
living right, etc., good people get sick sometimes.
Here is Dr. Kingsbury's condensation of his life lessons:
Positive Thinking is Not Enough. Maintain self-efficacy. Pick an arena
where you're useful. Physicians can help or squelch.
C. Robert Dahl, M.D., Gastroenterologist,
Private Practice, Wheatridge, CO.
Dr. Dahl is a member of the CSA Medical Advisory Board.
<Genetic, Immunological and Environmental Factors of Celiac Disease>
3. Review: Dr. Robert Dahl's presentation was billed as being for
<old-timer> celiacs. The delightful Dr. Dahl excelled in defining
terms such as crypts, antiendomyoseal antibodies, lumen, and lymphoma.
However, anyone who's heard Drs. Alessio Fasano or Joseph Murray speak
has gotten more up-to-date information about celiac disease.
3. Summary: I am not likely to summarize this session for the list,
for reasons stated in the review.
Lawrence R. Schiller, M.D., Gastroenterologist,
Section of Gastroenterology, Department of Internal Medicine, Baylor
Univ. Med. Ctr., Dallas.
<Question and Answer Session, Celiac Disease in Adults>
4. Review: A question-and-answer session for celiacs is a great (and
courageous) concept, since there never seems to be enough time for
Q-and-A after a doctor has given a talk. Because of the ground rule of
keeping questions to those of general interest, this hour was spent in
lively exchange with one of the most eloquent physicians in the field.
Some of the topics are similar to Listserv discussions: various
symptoms caused by other autoimmune conditions, ingestion through the
skin, why genes predispose an autoimmune attack, donating blood,
steroid use, blood sugar problems in new celiacs, bone pain, what kind
of follow-up to get.
4. Summary: to come at a later date. A summary of this session will
benefit from me reviewing a tape I made of (most of) the session.
Keep this in Mind:
Citing the former Surgeon General, Dr. C. Everett Koop, Janet Rinehart
reminds us, <No prescription is more valuable than knowledge.>
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