THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Volume 8, Number 7 August/September 1999
**********************************************************************
...........................................
: What's Inside :
: ------------- :
: Miscellaneous Notes :
: Thank God I'm Celiac :
: 1999 CCA Conference Highlights :
: Recent Pediatric Developments :
: Serological Testing :
: Pediatric Q & A :
: New Developments in Research :
: Panel Q & A :
:.........................................:
References
Disclaimer
Miscellaneous Notes:
--------------------
Lactaid is NOT GF: Thank you to TCCSSG member Sara Brooks for
bringing us this warning: "While re-reading the article about 'Doing
Disney World GF' in my April issue of The Sprue-nik Press, red flags
went up when I read how someone from Guest Relations at the resort
sent many gluten-free (GF) items including Lactaid milk to the room
for the celiac person. I recently (July 1999) inquired about Lactaid
milk being GF, and the representative said she '...could not guarantee
that Lactaid milk was GF.' This article unfortunately will have
misled many lactose intolerant celiacs into rushing to their grocery
stores to purchase this product. If you care to inquire yourself the
number is 1-800 522-8243."
Return to the Table of Contents
Thank God, I'm Celiac!
----------------------
by Marcia Campbell
That's right - thank God, I'm celiac. Oh, sure, before April, 1989, I
may not have been so thankful. Before Dr. A (Dr. Thomas Alexander,
TCCSSG physician advisor) announced the good news to me, I may have
been anything but grateful. I could have had any autoimmune disease.
In fact, since it was feared I might have had leukemia, I am glad the
diagnosis was only celiac disease.
In 1989, the diet was a bit awesome. Since Dr. A said I could keep my
beloved baked potatoes, I had a place to start in the diet, but
finding gluten-free products was extremely difficult. The dietitian I
consulted knew very little then about celiac disease and could only
offer materials more than l5 years old. Many of you have been in the
same position.
But that was then - and this is now. Do you realize the tremendous
progress companies have made with gluten-free foods and mixes? In
1989, there were no cake and brownie mixes.
If the May 1999 meeting of TCCSSG was any indication, celiacs should
have no problem getting prepared foods and mixes. For those of you
who took home a shopping bag of products, you know how tasty GF food
can be. We received samples from twenty companies to test and taste.
Not only that, we also enjoyed bread, muffins, and pound cake baked by
Joan Wade from Sylvan Border Farms. Joan flew in the night before
from California and baked so we could enjoy firsthand the fresh-made
tastes of Sylvan Border Farms products. Joan also shared information
with us concerning some of the questionable grains during the meeting.
Kozy Shack, Kitchen Basics, Ener-G Foods, Menu Direct, Dietary
Specialties, Legumes Plus, Mrs. Leeper's, Food for Life Baking,
Cybros, Ultimate Baking, Mendocino GF Products, Pamela's, Miss
Roben's, Gluten-Free Delight, Freeda Vitamins, Heartymix, The
Gluten-Free Pantry, Lundberg Family Farm, Tamarind Tree, and Specialty
Food Shop are to be supported and applauded for taking the time to
provide samples of varied foods. There were cookies, coffee cake,
pasta in all flavors and shapes, pretzels, throat lozenges, rice of
many varieties, rice cakes, breads, one-person meals, biscotti, cake
mixes, bread mixes, donut holes, lemon love notes, raspberry swirls,
pizza mix, cookie mixes of all kinds, muffin mixes. . .and on and on
and on.
If you crave pretzels - there are gluten-free pretzels available from
Dietary Specialties, Ener-G, and Miss Robens. If you long for
chocolate chip cookies, you can buy from Pamela's or buy a mix from
Gluten-Free Pantry. Did you say a yummy lemon bar would be good? Did
you try Gluten-Free Delights? What about pasta? Wow, where do you
begin? Mrs. Leeper's, Legumes Plus, Ener-G Foods? Are you in need of
multi-vitamins? Try Freeda's. Do you have a taste for the spicy?
Try Tamarind's one-meal in a box - microwaveable. I tried the lentil
chili and it was superb, easy to fix - like homemade. Rice cakes at
the beginning of a celiac's diet seem to be a staple. Have you tried
Lundberg Family Farms sesame-tamari or buttery caramel rice cakes?
O.K., you get the idea from my litany.
There is one more aspect the gluten-free companies have provided for
celiacs. There are products pre-packaged that are excellent for
travelers. Ener-G Foods packages bread, two slices to a packet, that
will go anywhere. Both Ener-G and Dietary Specialties have crackers
that are perfect as a replacement for bread while traveling. If you
carry a small cooler, Kozy Shack has marvelous puddings. There are
cookies, pretzels and breadsticks from a number of companies which are
tasty snacks.
On behalf of Tri-County, I would like to thank the companies who
willingly donated many samples in a large variety for the May meeting
of our group.
In ten years the gluten-free diet has gone from little choice to
dozens of choices. These companies are to be applauded for providing
tasty, pre-packaged or easy-to-prepare mixes for the celiac. Thank you
for responding to our request for samples.
If you aren't able to find these companies in your health food store,
you should do something about it. Take a list of the companies with
their addresses and phone numbers to your store and ask them to start
stocking their shelves with these products. Make recommendations of
the most popular choices to the store. Let TCCSSG know when your
health food store is making these products available. We all must
support the gluten-free companies - and in turn, we will profit with
more products being made available.
Yes, being a celiac isn't all bad. We have a healthy diet, don't need
to take medications to keep us well, have many choices from excellent
commercially made food products, and belong to an extremely supportive
group that understands our health concerns.
Thank God, I'm a celiac!
Return to the Table of Contents
1999 Canadian Celiac Association Conference Highlights
------------------------------------------------------
summarized by Tom & Carolyn Sullivan and Jim Lyles
General Comments
----------------
The conference was, as usual, very well organized and run. The
two-hour Sunday morning Q & A session is both unique to CCA
conferences and, in our estimation, one of the high points of the
conference each year. The speakers handle questions submitted ahead
of time as well as questions from the floor. The answers are
challenged, follow-up questions get asked, and in general it is a free
form discussion which exposes the issues, the different participants'
positions, and the reasons behind them. The high caliber of the
participants in the last two years has resulted in a very good
learning experience.
It was gratifying to see the increase in USA attendance this year:
Janet Rinehart, Houston, CSA past president
Cynthia Kupper, Seattle, Executive Director of GIG
Ann Whelan, New York, editor of Gluten-Free Living
Bette Hagman, Seattle, author of the Gluten-Free Gourmet cookbooks
Aileen and George Bennett, cookbook authors and CELIAC e-mail list
contributors
Don Wiss, New York, celiac web site owner and CELIAC e-mail list
contributor
Sam Wylde, Seattle, from Ener-G, a well-known vendor of gluten-free
products
Jim Lyles and Carolyn and Tom Sullivan, from TCCSSG.
This was a good representative cross section of our country. Next
year's conference will be in Hamilton, Ontario. Hamilton is about 40
miles south of Lester B. Pearson International Airport in Toronto,
making it easy to fly into. It is about 60 miles west of Buffalo and
200 miles east of Detroit, well within driving distance of either of
these locations. On top of that, the conference is scheduled for
Memorial Day weekend (May 26-28), so that a "mad dash" back on Sunday
night will not be necessary for most US citizens. Finally, consider
the favorable currency exchange rate. All these factors, when added
together, make next year's CCA conference well worth putting on your
calendars.
General Meeting
---------------
The annual general meeting of the CCA, which opened the conference,
was chaired by new president Jillian Mac Donald. She noted with
gratitude the grants from Health Canada which helped some chapters
send representatives to the conference, so that all chapters except
Prince Edward Island were represented. She introduced a
representative from Health Canada (whose name we did not get). He
stated that a change is occurring in the relationship between the
government of Canada and Canadian volunteer health organizations. The
government, particularly at the senior management level, recognizes
the existence and capabilities of the volunteers. CCA is one of about
50 such joint working groups.
In the 1993 conference in Regina (Saskatchewan), the talk was about
the need for people and money. While those needs still exist, what
has been added is the structure and organization of the volunteer
health groups and their marketing. However all volunteer groups and
members must realize:
1. The national office is nothing without the local units.
2. The local units are NOT effective without a good national office.
3. Both must tell their story through marketing.
The [Canadian] government's function is not to be involved with
details. It just sets the stage and clears hurdles out of the way.
The actual work is done by the volunteers.
Return to the Table of Contents
Recent Developments in Pediatric Research, Dr. Philip Butzner,
----------------------------------------- University of Calgary
Dr. Butzner noted that Celiac Disease (CD) is a permanent intolerance
to the ingestion of gluten characterized by inflammatory enteropathy
and malabsorption (villus atrophy, crypt hyperplasia, and increased
intraepithelial lymphocytes).
When Dr. Butzner started in 1981, tools for the diagnosis of CD were
limited to the biopsy. The classic case of CD that was seen in the
early 80's was the wasting child who typically presented as having a
bad growth curve and usually had the typical flat villi biopsy. Then
in the mid-80's in Europe and about 1995 in the U.S., serological
screening became available. However, the gold standard for diagnosing
CD remains the small intestine biopsy.
Dr. Butzner discussed CD and Type I Diabetes in children. Blood
screening, particularly IGA-EMA (anti-endomysial antibody),
demonstrated an association between CD and IDDM (Insulin Dependant
Diabetes Melititus, also called Type I Diabetes) of 1 to 4% whereas it
was only 0.02% in the general population. There are, of course,
significant risks if diabetes and CD are left untreated, such as
delayed puberty, growth failure, osteopenia, osteomalacia, anemia
and/or gastrointestinal lymphoma. However, an adult study found that
the metabolic control of the diabetes was improved in celiac patients
on a gluten-free (GF) diet (Shannon et al, 1982).
Dr. Butzner conducted a study to assess IGA-EMA as a screening test
for CD in children with IDDM. For the study, blood samples from 236
known diabetics (1-18 years in age) were tested for total IGA and
IGA-EMA by immunofluorescence. Of the 17 that had positive blood
tests, 12 were subsequently diagnosed with CD. This is a prevalence
of about 5%, which is far higher than the prevalence of CD in the
general population. These results suggest that all Type I diabetic
children should be screened for CD.
At Dr. Butzner's clinic they utilize the capsular intestinal biopsy
technique. One of his observations is that when taking a biopsy,
MULTIPLE biopsy sources are needed to ensure a true reading.
Permeability testing did not prove helpful. Better standards for
testing are needed.
Next Dr. Butzner spoke on oats. First, some facts:
* Avenin makes up 15% of the protein in oats, whereas gliadin makes
up 50% of the protein in wheat.
* Oats and rice are in the same subfamily as wheat, rye, and
barley, but not in the same family
Dr. Butzner noted that previous studies on oats were short term and
did not involve children. These studies showed no relapse. All used
pure (uncontaminated) oats.
Based on his clinical experience that 40% of celiac children cheat on
their GF diets, Dr. Butzner conducted a study on celiac children and
oats. The aim of the study was to determine the safety of adding a
moderate amount of commercially-available oats to the diet of celiac
children. He stated that he had contacted all the Canadian sources of
oats and could not find any GF oats for his study. Quaker Oats
provided their standard product for the study. 14 children, aged 8 to
16, with normal growth and no abnormalities, consumed oats 25 days per
month. They were given 1 gram (gm) of oats for each kilogram (kg) of
body weight per day, up to a maximum of 50 gm/day. The clinic
followed up by telephone at 1, 3, 6, and 9 months and with blood
testing and biopsy at one year. None of the children displayed any
symptoms during the year. After one year, one child had elevated
blood readings but a normal biopsy. Also, after one year, one child
who displayed blunted villi was determined to have been consuming
other grains. When the child returned to oats only, the blood
antibodies returned to normal in 3 months.
Dr. Butzner noted several conclusions from his research:
1. Commercially available oats are OK for celiac children to consume
daily for one year.
2. IGA-EMA testing is a sensitive method of monitoring dietary
compliance.
3. The quality of antibody testing must be improved so as to be
equivalent anywhere.
4. More food testing is needed and standards have to be established.
5. A safe source of oats should be available. To date there have
been no failures in two adult CD studies, two adult dermatitis
herpetiformis studies and now two children CD studies with oats.
[Editor's note: Our group remains unconvinced that oats are safe for
celiacs. Two studies presented at the "Seventh International
Symposium on Coeliac Disease" held in Tampere, Finland in 1996 present
a different picture:
* A Finland study looked at twelve adult dermatitis herpetiformis
(DH) patients who began eating oats. After three months, five of
them developed a slight rash on the knees, elbows, or scalp.<1>
* A study in Italy took biopsy samples from treated celiacs and
cultured them for 24 hours either alone or in the presence of
wheat gliadin or oat prolamines. After that time CD25+
lymphocytes were counted. It was found that in the presence of
wheat or oat prolamines there were significantly more of these
lymphocytes. The study concludes that these results suggest oat
prolamines are able to activate a T-cell mediated mucosal immune
system response in the jejunum of celiacs. In other words, these
results represent a warning against adding oats to the diet of a
celiac.<2>]
Return to the Table of Contents
Protean Manifestations of CD Serological Testing, Dr. Joseph Murray,
------------------------------------------------ Mayo Clinic,
Rochester, MN. Dr. Murray opened the first Celiac clinic in the USA
at the University of Iowa.
Dr. Murray noted that today, celiac disease (CD) has a widening
spectrum in the way it presents, the symptoms that improve on a
gluten-free (GF) diet and the serologic information that is available.
While CD may be the source of MANY symptoms, it is not the source of
ALL of our symptoms. Inflammatory bowel disease, Crohn's disease, and
other autoimmune diseases hide many cases of CD.
The classic definition of malabsorption has now been expanded to
include such areas as anemia, folate deficiency and hypocalcemia as
well as fat-soluble vitamin deficiency, raised alkaline phosphates and
prolonged prothrombin time (bruising and bleeding). How much of the
intestine is actually involved in the malabsorption and how much of
the rest of the intestine compensates for the problem is an unknown at
this time.
Celiacs can have many presentations: upper GI symptoms, constipation,
iron deficiency, diarrhea either with or without steatorrhea, or
lactose intolerance. (Parenthetically, Dr. Murray noted that
conditions like floating stools with a typical smell can be caused by
such simple inputs as apples and/or metamucil.) Many celiacs can
present with only one symptom such as failure to thrive, abdominal
pain or short stature. In the Sudan, for example, rickets is often
the only presentation while in Denmark, dental enamel defects may be
the only presentation. And oftentimes celiacs have had previous
diagnoses including irritable bowel syndrome (Crohn's, etc.), primary
lactose syndrome, psychiatric problems, menstrual blood loss, diabetic
diarrhea, giardia, inflammatory bowel disease, pernicious anemia,
peptic ulcer, pancreatitis and/or fibromyalgia.
Dr. Murray used the iceberg analogy in describing the types of
celiacs: the small group of classic celiacs at the top of the iceberg;
a larger group of atypical celiacs currently being diagnosed; a much
larger group, currently undiagnosed, with silent celiac disease; and
the base of the iceberg with a very large group of people with latent
gluten sensitivity. However, the iceberg is not the same in every
country. In Sweden, most celiacs are known and it is common for the
diagnosis to occur in childhood. In Europe, maybe half the celiacs
are known and only a quarter to a third are discovered in childhood.
In the U.S., a smaller percentage of the celiacs are diagnosed.
In order to diagnose CD, Dr. Murray believes a 3-prong focus is
necessary. First, a liberal duodenal biopsy policy is required. That
is, biopsy more rather than less often; don't hesitate to biopsy.
Second, all high risk groups should have at least the blood screening
test. These would include those with a family history of CD;
diabetics; those with thyroid problems or Down's syndrome; and
patients with either persistent diarrhea or IGA Deficiency. And
finally, all lactose intolerant Caucasians should be biopsied.
Dr. Murray discussed a study that was done on 216 patients at the
University of Iowa in the 1990's. The patients ages ranged from 1 to
90 with 80% being 18 years or older and a 3:1 ratio of females to
males. Before diagnosis and the GF diet, over 80% of the patients had
abdominal pain; bloating was common; approximately 75% had weight
loss; and 50% had daily diarrhea. After being on the GF diet, 20 to
25% still had daily diarrhea. And even though the diarrhea cleared up
for many within a week to a month, it took much longer for many
others. In addition, abdominal pain and bloating dropped
significantly but almost 20% developed constipation from the GF diet
due to lack of fiber. Also, nausea and stomach emptying were still a
problem.
Other observations from the study included:
* Patient pain covered a broad spectrum but showed dramatic
improvement on the GF diet.
* Patient pain could either be in the lower abdomen or diffuse.
* 46% of the patients' pain worsened with eating.
* 60% of the patients' pain improved with defecation.
* 46% of the patients met the Rome 2 symptomatic criteria for
Irritable Bowel Syndrome (IBS).
* Bone pain improved on the GF diet but joint pain showed no change.
* Fatigue, headaches and weight loss improved on the GF diet.
* Arthritis pain medication was reduced on the GF diet.
* The Body Mass Index, 50% thin; 25% normal; 12% overweight; and 11%
severely obese before the GF diet, returned to the same spread
within 6 to 18 months.
* Non-GI symptoms were common.
Dr. Murray offered several comments concerning the status of current
CD testing:
* Serologic testing allows for screening of asymptomatic patients.
* A recent study on tissue transglutaminase indicates that the
sensitivity is significantly reduced in cases of partial villus
atrophy.
* Initial comparison testing of endomysial antibody and tissue
transglutaminase tests indicates no significant difference.
* Serologic testing for follow-up is not useful for occasional
gluten ingestion.
Return to the Table of Contents
Pediatric Q&A with Dr. Butzner
------------------------------
Dr. Butzner held a Q & A session for parents of celiac children:
Q: What are the symptoms of IDDM (Type I diabetes) in children?
A: They tend to eat too much, drink too much, and urinate too often.
Q: How many biopsy samples do you get in a biopsy?
A: There are two ways to do a biopsy: capsular (older method), or
endoscopy. With the capsule method, they get one large sample.
With an endoscopy, you get 4-6 smaller samples. (But this varies
from doctor to doctor.)
Q: Is there any research being done on the connection between epilepsy
and Celiac Disease?
A: Dr. Butzner is not doing any research along these lines. He
mentioned a study in Italy, involving about 500 children with
seizures, where about 5 were found to have CD.
Q: Should the relatives of a celiac be tested for CD?
A: All first-degree relatives (parents, siblings, children) should be
screened for CD.
Q: Why are there different blood tests?
A: The IgA antigliadin antibody test was developed first, but it is
not specific to just CD. The IgA antiendomysial antibody test was
developed later and is more specific to CD. Also there is the IgG
version of the antibody tests, which is not specific to CD.
However, it is the only blood screening test that can be used in
patients that are IgA deficient (which is occasionally seen in CD).
Q: Is a gluten-challenge necessary to confirm diagnosis?
A: This used to be the practice, but isn't often done anymore.
Antibody tests can serve this purpose. If they are positive before
the GF diet and negative afterwards, that may be all that is
needed. In fact, even the second biopsy (after the GF diet) may
not be necessary. Dr. Butzner generally doesn't do a second biopsy
if the GF diet results in rapid recovery.
If giardia is suspected as well as CD, then the three-biopsy,
gluten-challenge approach might be needed. (Dr. Butzner said some
of his colleagues would argue that point.)
Q: How young can a child be diagnosed?
A: Not before age 2, unless there are symptoms.
Q: What do you recommend to a teenage celiac who wants to eat oats?
A: If the teenager intends to eat oats, then 1) do a blood test, 2)
eat one bowl of oatmeal per day (and no more), 3) if symptoms
develop, do another blood test and a biopsy, and 4) check
antibodies annually.
Q: If you already have all the typical celiac symptoms, why do you
need a biopsy?
A: The problem with screening or diagnosing based on symptoms is that
there are so many other possible causes of the same symptoms. NO
child should ever have the diagnosis of CD made without a biopsy.
No exceptions!
Q: What about lymphomas in celiac children?
A: Dr. Butzner knows of no studies on the subject. He has only heard
of one case of a child that had small intestinal lymphoma. We
don't know what the effect may be 50 years later. Studies in
adults suggest that after a GF diet the risk of lymphoma goes down
to near (but still slightly above) that of the general population.
Q: Someone diagnosed at age 3, and who is now in her 60's, asked what
(if anything) she should do regarding her risk of lymphoma?
A: The prevalence of intestinal T-cell lymphoma is 1:100,000. In
untreated celiacs it is about 1:10,000, which is still pretty rare.
Q: If diagnosis in a child is delayed, can there be stunted growth?
A: Usually the height isn't affected unless the delay is long. Weight
usually "catches up" within 3-6 months; if not, then Dr. Butzner
starts looking for another underlying problem.
Q: Should I worry about my 2-year-old's pot belly?
A: No, that alone is fairly normal in 2-year-olds. Without other
symptoms there is probably no cause for alarm.
Q: How do you convince the doctor to do a biopsy when there are
symptoms, if the doctor doesn't want to do it?
A: If all efforts fail, and you are convinced it's a mistake, then
change doctors.
Q: What about behavior in celiac kids?
A: Dr. Butzner has no hard data on this topic, though he noted that
undiagnosed celiac kids tend to be irritable.
Return to the Table of Contents
New Developments in CD Research and Rectal Challenge, Dr. Michael
---------------------------------------------------- Marsh,
University of Manchester Medical School, England
Dr. Marsh believes it is probable that the avenins in oats are not
toxic to celiacs.
The regulation of the immune systems is brought about by genes. In a
celiac the response is not controlled; the immune system fails the
"self/non-self" test, causing an inappropriate response.
The antigen is in highest concentration in the jejunum, therefore the
highest number of T-cells can be found there. However, even down in
the rectum some of the T-cells exist. Therefore, a rectal challenge
with gluten will result in inflammation in a celiac.
Dr. Marsh described the rectal gluten challenge as a diagnostic and
management tool. The premise of the test is that a gluten challenge
can be conducted anywhere in the intestinal tract and show a reaction.
The T lymphocytes are the agents of damage, and in celiacs produce an
uncontrolled response. With a biopsy after 4 hours, computer
scanning, and mathematical analysis software, it is possible to
separate celiacs from controls with 100% certainty. [Editor's note:
There doesn't appear to be a published dispute with Dr. Marsh's
findings, but there also does not appear to be a published duplication
of his results from other sources.]
How do we measure this response? There are three areas to consider:
the surface epithelia, the crypt epithelia, and the lamina propria in
between. A 100 x 100 micron area is used as the standard to compare
against.
Here is a comparison of the number of lymphocytes found in the 100x100
micron area:
Controls Untreated CD
surface epithelium 2.6 0.6
crypt epithelium 0.6 1.9
lamina propria 1.4 2.8
Loft reported the results of a study in Gastroenterology 1989.
There were 10 subjects and 6 controls. Gluten was introduced to the
rectal tissue. A biopsy afterwards showed an inflammatory response in
celiacs, but not in the controls. In only 6-8 hours there was a
noticeable increase in crypt epithelial lymphocytes in celiacs.
Ensari (Turkey) repeated Loft's work, with additions. There were 31
celiacs and 34 controls. For this study, an untreated celiac was
defined as having "flat mucosa". Signam brand gluten was used as the
antigen. Biopsies were done at 0, 2, and 4 hours. At each interval
they looked at gamma, delta, and various other T-cells, along with
routine blood tests, fecal fat, xylose excretion, and jejunal biopsy.
After 2 hours there were changes that tended to separate celiacs from
non-celiacs. The sensitivity was about 70%, specificity about 80%.
After 4 hours the changes were more marked. Celiacs and non-celiacs
were clearly separated. Sensitivity and specificity were both 100%.
This looked "embarassingly good"; they didn't "cook" the figures.
Regression analysis compared with all the other potential diagnostic
tests shows only the jejunal biopsy matches the 4-hour rectal gluten
biopsy in specificity and sensitivity.
So why use the rectal challenge?
* It is relatively easy.
* It uses a well-documented protocol.
* It works for any age group.
* It finds latent/refractory sprues.
* It is a dynamic test. (All other tests are passive, 'after-the
fact' tests.)
Note: The rectal challenge does NOT work in patients that are on a GF
diet, so it is no different from the jejunal biopsy or the blood tests
in this respect. It may still be useful though if the patient has
been on a GF diet for 6 months or less.
Dr. Marsh then answered some questions from the floor.
Q: What diseases did the controls have in your study?
A: Diarrhea, iron deficiency, bone disease, etc.; all were coming to
the clinic anyway.
Q: Did the technician know which samples were from celiacs and which
were controls prior to counting lymphocytes?
A: No, she had no idea.
Q: How can people in Canada get access to this test?
A: Right now you probably can't. It is not in wide use in the USA or
Canada. Dr. Murray responds: It is fairly new; it is not
standardized between labs. Also people in general are opposed to
having items inserted in their rectums. (Not all audience members
agreed.) Also the studies need to be repeated and verified
elsewhere.
Return to the Table of Contents
Panel Q & A, Drs. Braly, Butzner, Marsh, and Murray
-----------
Q: I have CD. My mother has symptoms of CD. Her doctor did not do a
biopsy, he just put her on the diet. Any problem with that?
A: Dr. Murray indicated that this is the attitude they are trying to
change in medicine today. There is a strong possibility of Celiac
Disease (CD) but testing will be much more difficult. Older
patients often have problems if they are then later put on a
gluten-challenge to confirm diagnosis. Dr. Marsh suggested that if
an individual has CD and any of their relatives are suspect, one
should make sure that they have a diagnosis BEFORE starting the
gluten-free (GF) diet
Q: Hypospleenism: Will it improve? Are you more susceptible to
infections?
A: Dr. Marsh indicated that if the spleen is out, one is more
sensitive to the pneumococal vaccine. You should not be more
susceptible to infection. Dr. Murray stated that once you go on
the diet, you can expect the spleen function to improve to some
degree. He recommends pneumovax for his patients (a one-time
vaccine). He doesn't believe they are any more susceptible to
viral infections.
Q: Is there reason to believe that people who cheat on the diet will
have troubles later?
A: Dr. Murray stated that if one cheats on the diet once per month or
more, you can assume that damage is occurring. If one cheats once
per week, then they are not compliant and you can presume that
damage is occurring and yes, there will be consequences. Dr.
Butzner noted that toddlers are usually OK with the diet until they
get to school. He sees a lot of cheating among teenagers.
Sometimes fear of stunted growth will keep boys on the diet.
Compliance in teenagers is usually better if they see the dietitian
and doctor on a regular basis.
Q: What forms can Dermatitis Herpetiformis (DH) take? Is it possible
to have an itch without a lesion?
A: Dr. Marsh: No, without the eruptions it is not DH. They are a
major symptom of the disease. There are many other causes of itchy
skin. Dr. Murray: There is a form of dermatitis that is not DH,
caused by poor nutrition, which improves when a more nutritious
diet is introduced. In celiacs this could happen once the gut
heals on a GF diet. Dr. Butzner: DH is rare in children.
Q: Can you give more details about tooth enamel defects?
A: Dr. Murray: If a child has malabsorption at the time that enamel
is forming, then there will be defects. After the fact there is
little you can do other than be aggressive about applying
protective coatings and possibly avoiding highly-acidic foods. Dr.
Marsh: It is worth looking for that in a child, especially if a
parent is a celiac.
Q: Consider a 12 year old female, diagnosed at age 5. She had a
circle of hair loss at the time of diagnosis, then lost all the
remaining hair on her head. All treatments have failed, she still
has no hair on her head. She does have pubic and under arm hair.
Is this related to CD? Can she expect to get her hair back?
A: Dr. Butzner: Pubic and under arm hair is controlled by a separate
mechanism than hair on the head. This is not a common problem in
children. There are autoimmune diseases which involve hair loss;
she may have one of these. The GF diet is not likely to help her;
she may have lost her hair even without CD. Dr. Murray: Sounds
like alopecia areata, though complete loss of hair is unusual.
Check for thyroid problems. But future improvement is uncertain.
Q: Is there any value in eating according to blood type?
A: Dr. Murray: There is no convincing scientific evidence to support
the theory.
Q: Is there any reason to have repeat biopsies?
A: Dr. Marsh: I don't generally re-biopsy my patients. There are
other ways of determining that the diet is working. Dr. Murray: I
agree. If symptoms persist longer than a year, or return after
abating, or if there is any uncertainty about the diagnosis, then a
second biopsy may be warranted. Dr. Butzner: Return of growth
usually confirms the diagnosis; there's no need generally to repeat
the biopsy. In children who are not responding, further
investigation is appropriate whether it involves a repeat biopsy or
other testing.
Q: At this point, Dr. Braly asked: What percentage of biopsies miss
the disease? Do you see the day soon when blood testing replaces
the biopsy?
A: Dr. Marsh: No hard data, but I suspect not many are missed. With
full villous atrophy, EMA tests are nearly there now; but with
partial villous atrophy they don't do the job. Dr. Murray: There
are quality issues involved in taking the samples and interpreting
them, but not many are missed.
Q: Does rectal challenge offer a better way of diagnosing than
biopsies?
A: Dr. Marsh: Rectal challenge can be a valuable diagnostic tool.
Dr. Butzner: Nobody should have the diagnosis of CD made without
the intestinal biopsy. [Clearly the panel experts have some
disagreement on this issue.--editor]
Q: In the US, is there a problem with pathologists not diagnosing CD
unless the mucosa is flat?
A: Dr. Murray: Yes, there are variations wherever humans are
involved. In some cases pathologists fail to diagnose CD even when
the mucosa are completely flat. Often pathologists describe
results without pointing out CD as a possible cause. The more
subtle the damage, the more likely it is to be missed. It can be
improved if the clinician also looks at the slides and discusses
them with the pathologist. Dr. Marsh: A lot of pathologists don't
seem to have a clue as to how to interpret biopsies (in his
experience). The pathologists have a key role, since most
physicians don't look at the biopsies themselves.
Q: I've had two bowel surgeries since February. I can't gain weight
and I have lots of bloating. My dietitian thinks it's too much fat
in my diet. Any suggestions?
A: Dr. Murray: It could be a pseudo-obstruction (where the intestine
fails to squeeze the food and move it along). If so, it is
treatable by drugs and diet changes.
Q: Are dry, cracking fingertips a CD issue?
A: Dr. Murray: They can occur because of any malabsorption and are
not CD related.
Q: Do recovered CD patients absorb normally?
A: All agreed the answer is Yes. Dr. Butzner: A rare problem in
children is pancreatic insufficiency that fails to improve on a GF
diet. But this is VERY rare. Dr. Marsh: In world literature there
are about 100 cases of pancreatic insufficiency, most of which
improved on the GF diet.
Q: What is the suggested level of gluten ingestion for optimum testing
for CD?
A: Dr. Murray: There is no specific answer. Dr. Marsh: There is no
agreed, universal protocol for the amount of gluten, the duration
of the challenge, or the expected results. Dr. Murray: Also there
is a variation of gluten content in wheat; apparently Alberta wheat
has almost twice the gluten of USA wheat. For a gluten-challenge,
I recommend building up gradually: 1/2 cracker first day, 1
cracker second day, etc., until a significant amount is ingested.
Then I wait until symptoms begin to occur. If no symptoms occur
after 6 months to a year, then I generally do the biopsy anyway.
Q: Celiacs in other countries drink beer and eat wheat starch. Are
these celiacs more likely to develop cancer?
A: Dr. Marsh has always told his patients they could have beer and
whiskey, and never had a patient come back with a problem. Dr.
Murray doesn't recommend beer; wine is a good alternative. [Our
group has always advised against beer in the celiac diet.-editor]
At this point Dr. Braly commented: "Intestinal permeability can be
a problem. Alcohol can increase that." Dr. Murray responded: "On
a GF diet, permeability problems improve, so there is no more
problem than for non-celiacs."
Q: Celiac and schizophrenia: Is there a connection?
A: Dr. Murray: A slight increase in prevalence was found in one study
in Ireland. The GF diet may help some schizophrenics; there is
good data to support it and in one case a small study refuted it.
Dr. Marsh: Schizophrenics don't have the same genetic makeup as
celiacs; there is no relationship.
Q: What is the prevalence of CD in Autism and Asperger's Syndrome?
A: Dr. Murray: There is no connection between these conditions and
CD. If gluten plays a role, it is not from a celiac perspective.
Q: Can you react to wheat proteins and not be a celiac?
A: Dr. Butzner: Yes. CD is T-cell mediated; there are also B-cell
and IgE related immune responses to antigens.
Q: What about oats for celiac children? Will Dr. Butzner's study
continue longer-term? CCA still advises against oats; comments?
A: Dr. Butzner said the study will continue for those willing to
continue eating them. He's not ready to recommend oats to celiacs.
Long-term studies need to be done concerning oats. How much gluten
is too much? CODEX recommends 10 mg/100grams/day.
500mg/100grams/day has been shown to cause problems in celiacs.
Anything less is difficult to measure, and it is difficult to tell
how much it takes to cause a problem. We need to do more research
to determine how GF a celiac must be.
Q: Is there any association between esophageal reflux disease and CD?
A: There are no studies to show any connection. A lot of adults in
the US suffer from heartburn. However, an Italian study has shown
that delayed gastric emptying improves on the GF diet.
Return to the Table of Contents
References
----------
<1> "Oats for Patients with Dermatitis Herpetiformis", T Reunala, P
Collin, et al, University Hospitals, Tampere and Helsinki, Finland.
<2> "Oats Prolamines In Vitro Activate Intestinal Cell-Mediated
Immunity in Coeliac Disease", N Leone, G Mazzarella, et al, Univ
Federico II, Naples; Istituto di Scienze dell'Alimentazione CNR,
Avellino; and Istituto Superiore di Sanita, Rome; Italy.
Return to the Table of Contents
Tri-County Celiac Sprue Support Group Officials:
------------------------------------------------
Physician Advisor: Thomas Alexander, M.D.
Pediatric Advisor: Robert Truding, M.D.
Dietitian Advisor: Dorothy Vaughan, R.D.
President: Mary Guerriero
Vice President: Sue Gentilia
Past President: Diane Morof
Finance Committee: Tom Sullivan
Secretaries: Marilynn Ponto
Pat Michael
Web Page Editor: Pam Murphy
Newsletter Editor: Jim Lyles
Contributing Editors: Tom & Carolyn Sullivan
Group E-mail address: tccssg@yahoo.com
Group web page: http://community.mlive.com/cc/celiac
Disclaimer:
-----------
All recommendations, information, dietary suggestions, menus, shopping
guide suggestions, medical updates, miscellaneous articles, and
recipes in this newsletter are intended for the benefit of our
members, readers, and the general public. No liability is assumed by
the Tri-County Celiac Sprue Support Group or any of its members.
Information in The Sprue-nik Press has been approved by our
physician and dietitian advisors. Individuals should consult with
their physicians and dietitians before following any medical or
dietary recommendations in The Sprue-nik Press.
Original material used in The Sprue-nik Press is placed in the
public domain for the benefit of all celiacs. The information is not
copyrighted to facilitate the easy exchange of celiac information.
Feel free to reproduce any portion of this newsletter, unless it
specifically states otherwise. All we ask is that you indicate where
the information came from.
The Sprue-nik Press is published by the Tri-County Celiac Sprue
Support Group (TCCSSG), a local chapter of CSA/USA located in
southeast Michigan. Members receive this newsletter, a shopping
guide, and a new member packet full of articles and useful
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information, send a note to tccssg@yahoo.com.
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