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Panel Q & A, Drs. Braly, Butzner, Marsh, and Murray
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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.
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