<<Disclaimer: Verify this information before applying it to your situation.>>
Q & A
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Q: Is there any connection between arthritis and CD?
A: I don't know of any even though arthritis is sometimes the only
presentation.
Q: If a patient has positive blood tests but a normal biopsy, do they
have CD?
A: This may describe latent CD. Symptoms alone will not tell if CD
is present. Testing must be done for a certain type of
lymphocyte. Within 5 years a typical CD biopsy may develop.
Q: Does a negative blood test always mean no CD?
A: No. Family history and symptoms consistent with CD are also
factors in determining if a biopsy is necessary.
Q: If all tests for CD are negative but a patient has CD symptoms and
a family history of CD, should they have a biopsy?
A: Absolutely yes.
Q: A patient was diagnosed 7 years ago and has been OK on the GF diet
until about 3 months ago when bloating, diarrhea and other
symptoms started appearing. Why?
A: Several things are possible. First, it need not be CD. There are
various other diseases that have similar symptoms such as spastic
or irritable bowel which would require other treatment. There may
be inadvertent gluten ingestion or the CD could have progressed to
the refractory stage where it doesn't respond to treatment in
which case a new biopsy would be required. Or lymphocytic colitis
could be a possibility to consider.
Q: How does one handle the diet in a hospital?
A: You must be very emphatic. This is your health that is in danger.
NOTE: Ron De Cicco, who spent time in the hospital for knee
replacement surgery (see "Total Knee Replacement", The Sprue-nik
Press, April 1997, pg. 3), stated that you should get the doctor
to write it on the orders. Then it must be followed; you have
your doctor's orders to point to if it isn't.
Q: After a patient has been on the GF diet for a long time, what are
the results of inadvertent intake of gluten?
A: There is no answer. The longer one is on the GF diet, usually the
better control of the diet one has. However, individual responses
to inadvertent gluten intake are just that, individual.
Q: A patient was recently diagnosed with CD but the follow-up biopsy
showed no change. Why?
A: It may take time for any improvement to show. The patient usually
requires about 3 or 4 months to figure out the diet and then the
body requires another several months to heal. The European
practice is to re-biopsy in 3 to 6 months but I consider that too
soon. It might be valid if the symptoms are very minor.
Q: What about vitamin and mineral supplements?
A: Take a standard "One-A-Day" type of vitamin. Vitamins are
important, you have been deficient in them for a long time, and
the one-a-day variety can't hurt. B12 deficiency, for example,
can cause a nerve deficiency. The megavitamin regime- NO! But
the regular one-a-day, yes.
Q: If one has anemia, negative blood tests, but a flat small
intestine biopsy, is there a possibility of mixed up test samples
and is a second opinion necessary or does one have CD?
A: Mixed-up blood test samples is not the problem here. If you see
the disease in the biopsy, you have it. If you don't see it, you
don't have it. A second opinion in this case is unnecessary.
Q: After the initial diagnosis of CD and being placed on the GF diet,
what follow-up should be done?
A: Each year there should be a physical exam and blood tests. (This
would be prudent even if the patient has no symptoms.) At the
initial diagnosis a bone density test should be taken. Depending
upon the age, sex (women should be tested more often) and symptoms
of the patient, bone density tests should be taken probably every
5 to 15 years. After the first year there should be a follow-up
biopsy.
Q: Should blood tests be used with children for follow-up?
A: Blood tests could be used for every patient. They are helpful for
monitoring purposes. They can check for inadvertent gluten in
children and/or adults.
Q: Does CD cause headaches and migraines?
A: The symptoms are listed but the connection is not known. If one
is diagnosed with CD and the headaches still persist, look for
another cause.
Q: What about a partial GF diet?
A: It is not good and is definitely NOT recommended. The lower
limits of tolerable gluten intake are not known. If cancer
develops, it is extremely difficult to treat.
Q: What does one look for to diagnose CD in young children?
A: The most common presentations in young children are diarrhea
and/or a drop in the growth curve.
Q: What does one look for to diagnose CD if there are no symptoms?
A: Blood tests such as gliadin, endomysial, and tissue
transglutaminase antibodies are the first clinical tests. If
there is any suspicion from these tests or from other symptoms,
then the biopsy should be done.
Q: How does all this apply to dermatitis herpetiformis (DH)?
A: DH is a very itchy skin condition usually found symmetrically on
the body extensions, elbows, buttocks, etc. 90% of DH patients
also have CD but many have no gastrointestinal symptoms. When DH
patients are put on a GF diet, the majority respond. For DH
patients it is recommended that they be tested for CD and usually
they should have a biopsy too.
NOTE: A member suggested that a change to 100% cotton sheets, no
polyester, helped her skin irritation problems.
Q: How is the absorption of medications, and in particular thyroid,
affected by CD?
A: Untreated or newly-diagnosed celiac patients can have problems
with drugs. The absorptive capacity is severely restricted
because drugs are processed into the body via enzymes on the tips
of the villi.
Q: Why isn't the medical profession more aware of CD?
A: The history of CD is one of a slow learning process. It wasn't
until after World War II that a connection was made between the
disease and wheat. Then the gluten portion of wheat was found to
be the problem for celiacs, and finally the gliadin portion in
wheat gluten. In the last 5 years, the publication of information
in journals has just exploded. Doctors are now checking for the
disease earlier, they are recognizing that it doesn't have to be
accompanied by diarrhea and weight loss. Each celiac can help the
learning process by providing information to their own personal
doctor.
Q: Are there different standards for the GF diet?
A: Yes. In the United States, we espouse a zero tolerance standard.
In England, for example, they allow wheat starch. A celiac must
read labels and be aware of the differences between countries when
using imported products.
Q: Is alcohol OK?
A: There is no one answer. Alcohol is simply an OH radical at the
end of a chemical name. If you are referring to alcoholic drinks,
then wine, potato vodka, tequila, and rum would generally be
acceptable. Wine coolers are generally not acceptable because
malt is usually added to them.
If you are referring to a pharmaceutical, you would need to talk
to the company. If you are talking about distilled alcohol with a
food chemist, then the answer would be that gluten can't transfer
through the distillation process even though gliadin is the
alcohol-soluble portion of the gluten molecule.
[Editor's note: Distillation involves evaporating the liquid,
capturing the vapor it forms, and then allowing the vapor to
condense back into a liquid in another container. Any impurities
in the liquid are left behind, unless these impurities evaporate
as well. Gliadin is a protein, and proteins don't evaporate.
Therefore, the process of distilling alcohol or vinegar should
remove any gluten proteins from the liquid. In theory, the only
way you could still have gliadin in distilled alcohol or vinegar
is if there is some environmental cross contamination between the
original gluten grains and the distilled end product.]
Q: Is there any correlation between an allergic reaction to sulfites
in wine and CD?
A: No. Allergic reactions and celiac reactions are caused by two
different mechanisms in the body.
Q: What is the time lag between ingesting gluten and having a gluten
reaction?
A: It can vary anywhere from almost immediate to taking years.
Everybody is different, but usually an individual will react
within 24 hours.
Q: Are oats, buckwheat, and millet OK?
A: Oats are not recommended because of the high probability of
cross-contamination in the products commercially available to
celiacs. The one study done on oats was conducted for only one
year and was done with specially-grown and handled pure
oats-something not commercially available in the United States.
Buckwheat and millet are not a problem themselves, but again, you
may have trouble finding a source that does not have
cross-contamination issues.
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