If you or your child have been recently diagnosed, you should know that:
group provides a new
Life with Celiac Disease" is highly recommended. If you
buy only one book about CD, this should be it!
If you have recently been diagnosed with a biopsy,
the University of Chicago Celiac Disease Program will send a gift
basket full of gluten-free foods and information. This gift basket
is intended to help people who are just learning the diet, or
those who are having trouble adjusting to the diet, for up to
one year after diagnosis. To receive a basket, call their information
line at: (773) 702-7593. This program and other services offered
at the University of Chicago are described here.
It's a good idea to request a copy of your blood test and biopsy
results for your records. You may have received a letter summarizing
these results, but it's best to also ask for a copy of the lab
is often found in over-the-counter drugs. It is much less common
in prescription drugs. There is a list of gluten-free medications
a site maintained by a pharmacist. You can also ask your pharmacist
to check with the manufacturer before buying a medication. ("I'd
like to buy this but I can't unless I know it's gluten-free. Can
you check with the manufacturer?")
you continue to have digestive symptoms on the GF diet, you may
have lactose intolerance, which is quite common in people with
CD. Fortunately, this usually improves after about 6 months on
the diet. Until then, you can avoid dairy or try lactase supplements.
Catholic church requires at least some wheat in the host. A very
low-gluten host has been developed that may be suitable for you
to use. For more information: Catholic
Celiac Society. Other denominations use rice hosts.
Labeling Fact Sheet tells how to identify wheat and some barley
ingredients on the new food labels. It does not address the
possibility of cross-contamination. For more information on cross-contamination,
go to Contamination
Issues, and read Best Bets for Avoiding
you continue to feel bad on the GF diet, further medical evaluation
may be needed. The following page has links to information that
might be helpful: GF
and not feeling well
is a national listserv for Celiac Disease. To join the list or
read the archives, click here.
excess cost of gluten-free food is tax deductible if it exceeds
7.5% of your adjusted gross income (IRS
Pub. 502). The amounts that are deductible are listed here.
You can also use Flexible Spending Account funds to buy GF food.
of Chicago provides information about the follow-up
testing you should have (about 2/3 of the way down their webpage).
Columbia University Celiac Disease Center has recommendations
on the medical
management of Celiac Disease.
can call manufacturers and ask about the risk of cross-contamination.
Most food products have a toll-free number on the label, and the
customer-service representatives are often able to answer this
list of companies that label wheat, rye and barley (not just wheat)
ingredients was compiled by one of our support group members and
can be found here.
is a form of wheat, it does contain gluten, and
is not safe for the gluten-free diet.
gluten grains do contain partially broken-down
gluten protein which is not safe for the gluten-free diet.
Disease "runs in the family". Celiac specialists recommend
that at least all first-degree relatives of anyone with CD should
also be tested. This includes parents, children, brothers and
sisters. Ideally, second degree relatives should be tested too.
The following is copied from the FAQ for the Warren
Medical Research Center for Celiac Disease:
I have Celiac Disease, what is the chance that my family members
will have Celiac Disease?
is a genetic condition, which means that immediate family members
can share the same disease-causing genes. The frequency of celiac
disease among siblings, children or parents (first degree relatives)
can be as high as 10-15%, compared to the estimated 1% in the general
population in the United States. The frequency among more distant
relatives is lower. Given these high probabilities, we advise the
screening of at least first degree family members for celiac disease.
Serologic blood testing, and in some situations genetic testing,
are a reasonable initial approach. If positive, these should be
followed up by small intestinal biopsy.
Bets for Avoiding Cross-Contamination:
has been considerable effort in the Celiac community to identify
"commercial products" that are safe. However, you should
know that any food processed on any equipment shared with gluten
is at risk to have at least some degree of contamination. To
be gluten-free, special handling is needed during every step of
growing, harvesting, milling and processing of non-gluten grains.
Shared equipment results in gluten contamination, whether in the
field, a manufacturing facility, a restaurant, or a home kitchen.
The FDA prepared a report on the occurrence of cross-contact which
you can read here.
an example, Gluten Intolerance Group runs a gluten-free certification
program, and in the process of testing they have found two large
manufacturers of rice flour that would not meet the standard for
"gluten-free". You can read their
letter to the FDA which discusses this problem.
commercial products are likely to be truly
gluten-free, not because of any great skill on the part of the manufacturer,
but simply because there is normally no gluten involved in their
processing, such as canned tomato products.
are many good references to help identify potential contamination
problems in the home, such as Gluten Intolerance Group's Quick
Start Diet Guide.
for a truly gluten-free diet (use these tips especially if you
are very sick or very sensitive):
much as possible, stay with home cooking using fresh foods and
minimally-processed foods that were made in a gluten-free environment.
Try using starches in frying and baking, such as cornstarch, potato
starch and tapioca starch. Starches have been processed to remove
the protein. Although there may be a small amount of residual
protein, most of that would be, for example, from the corn, potato
or tapioca used to make the starch, and not from any contaminating
wheat. (Note that wheat starch is not considered safe).
A cookbook that uses only starches is "The
Gluten-Free Kitchen" by Robin Ryberg. Also, Chebe
Bread is an excellent line of bread mixes made with tapioca
milling your own flour. This way, you can inspect and wash the
whole grains, greatly reducing the chance of contamination in
you buy GF products, buy those that have been
certified gluten-free. The GFCO certifies products to have
less than 10 ppm gluten, which is the best standard available.
CSA recommends certain food
manufacturers that have obtained their "Seal of Recognition".
is help on the horizon. It may be possible in the not-too-distant
future to take an enzyme with food that will break down the gluten
molecule. This is not expected to be a substitute for the GF diet,
but should help deal with the cross-contamination problem. Note
that enzyme supplements currently marketed have not been tested
Food-Grade Enzyme Preparation with Modest Gluten Detoxification