THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Volume 9, Number 4 April/May 2000
**********************************************************************
...........................................
: What's Inside :
: ------------- :
: Miscellaneous Notes :
: Can't Come to a Blood Screening? :
: Helpful Tips from the Readers :
: Prevalence of CD in the US :
: Finding GF Pharmaceuticals :
: Celiac on the Internet :
: What's My Diet? :
: A Shot Worth Considering? :
:.........................................:
References
Disclaimer
Miscellaneous Notes:
--------------------
Can't Come to a Blood Screening?
-------------------------------
So you can't come to one of the blood screenings for the University of
Maryland Center for Celiac Research? Never fear; you can still
participate individually in the study. Here's how:
If you have access to the internet, you can visit the University of
Maryland Center for Celiac Research website at
http://celiaccenter.org for instructions, or e-mail the center at
iberti@som.umaryland.edu to request a consent form, a questionnaire,
and instructions on how to proceed as an individual participant.
If you don't have access to the internet, then write to the Center for
Celiac Research laboratory, call them, or fax them to request a
consent form, a questionnaire, and instructions on how to proceed as
an individual participant. Here is the contact information:
Pediatric GI & Nutrition Laboratory
UMAB Bressler Research Building
Attention: Tania Gerarduzzi, M.D.
655 W. Baltimore Street, Room 10-049
Baltimore, MD 2120l
Phone number: 410-706-3734
Fax number: 410-706-1669
Once you have the proper materials from the Center laboratory, you may
then see your own doctor to have your blood sample drawn. The Center
laboratory suggests the following procedure for the procurement of the
blood sample. To ensure that the proper procedure is followed, bring
this page with you and give it to your doctor or lab:
1. 7 to 10 ml of blood should be taken into a red-top tube.
2. The blood should be mailed to the Center lab (address above) along
with the completed questionnaire and the signed consent form (both
supplied by the Center).
3. Please ship by overnight mail in a plastic foam box.
4. Until mailing, the sample should be stored at room temperature.
5. Mail it immediately overnight in a plastic foam box at room
temperature.
6. Mail it to the Center laboratory at the address above.
-=-=- -=-=-
Helpful Tips from the Readers, edited by Terry Kotlensky
-----------------------------
This month I had to do some digging for some helpful tips! Hello
readers, I need help from all of you fellow celiacs! Please call me
at 810-632-3083 or e-mail me at thisisit@bignet.net with your
helpful tips. Thanks!
Terry's tips: My kids love chocolate chip cookies, but I don't care
for the mess and chance of contamination of regular flour. We buy
large containers of cookie dough at COSTCO. It's a big hit with the
non-celiacs in my house. They can have fresh home-made cookies and I
don't have to "sterilize" my kitchen! A melon ball scooper makes it
easier too for making perfect size cookies.
Recently I purchased some gluten-free mixes and baked goods from a
company called Kinnikinnick. Everything was excellent, especially
their vanilla creme cookies! They don't guarantee the cookies will
make it in one piece, but they were great anyway. The crumbs are
wonderful on ice cream!
Besides being celiac, I am also allergic to yeast. Finding a great
tasting bread is nearly impossible as some of you may know! But,
don't give up until you try Kinnikinnick's yeast-free Candadi bread
mix. It's the best I've ever had, even better than home-made! When
you don't have time to bake, their yeast-free prepared bread is like
Ener-G, except it has some flavor to it! (Maybe someone should tell
Ener-G to use a little salt!) They also have donuts, bagels, muffins,
and much more! Call them toll free at 877-503-4466 or visit their web
page at http://www.kinnikinnick.com.--Terry Kotlensky
-=-=- -=-=-
Summer Celiac Activities: Although we will not be having any chapter
general meetings for the next couple of months, there are national and
international celiac activities that you should remember and seriously
consider attending. The Canadian Celiac Association will be holding
their annual national conference in Hamilton, Ontario on May 26-28,
2000. The 9th International Symposium on Celiac Disease is being held
in Baltimore, Maryland on Aug 10-13, 2000. And the CSA/USA Annual
Conference is being held in Albuquerque, New Mexico on Sept 29-Oct 1,
2000. Consider attending one or more of these conferences this year.
We'll see you at our next general meeting in September.
-=-=- -=-=-
Awareness in the Skies: "Celiacs Helping Celiacs" is our motto, and
often non-celiacs get in the act as well, sometimes in the most
unlikely places. Our daughter-in-law Joyce, not a celiac herself, was
a TWA flight attendant on a flight to North Carolina. While Joyce was
passing out pretzels, one woman passenger asked for peanuts instead
because she couldn't eat the pretzels. Joyce asked her if she was a
celiac. When the passenger recovered from her surprise, she said,
"Yes, I'm new to it, but why do you ask?" Joyce said her
mother-in-law and brother-in-law both have it, they had tons of
information about the disease, could help her get in touch with a
local support group, and did she want to make connections with her
mother-in-law?
With that, another female passenger across the aisle spoke up and
said, "I'm also celiac and have all that information here with me.
I'll give it to you now if you wish." Joyce moved on. The ladies
talked. And another "Celiacs Helping Celiacs" story was
made.--Carolyn Sullivan.
-=-=- -=-=-
Wyler's Bouillon is NOT gluten-free, according to an e-mail response
received by TCCSSG member Pam Murphy. To quote, "...Wyler's Bouillon
is not considered gluten-free in either Shakers or Cubes form." For
more information, send an e-mail inquiry to letters@wylers.com.
Return to the Table of Contents
Prevalence of CD in the United States<1>
----------------------------------------
by Karoly Horvath, MD
summarized by Greta De Wolf and Kersti Borysowicz
In March we held a successful blood screening, in support of research
being conducted at the University of Maryland. One of the two
co-directors of this research spoke to the group during the blood
screening. What follows are some highlights of that talk.
Dr. Karoly Horvath came to this country from Hungary in 1993 where he
had completed his degrees in medicine and PhD in the topic of Celiac
Disease. He and Dr. Alessio Fasano began the Center for Celiac
Research at the University of Maryland in Baltimore. They have been
organizing a study to estimate the prevalence of this disease in the
United States and identify those who are at risk.
At this time, there is no reliable data which summarizes or reflects
how many people in the United States have the genetic potential for
celiac disease (CD). Currently those diagnosed are only the tip of
the iceberg and they usually present with typical symptoms.
There are three factors necessary for the manifestation of CD: a
genetic predisposition; ingestion of wheat, barley, or rye; and a
specific immune response leading to antibody production and tissue
damage. [Many experts feel ingestion of oats could also be a
factor.--ed.]
The known genetic factors for CD are localized on Chromosone 6 at the
Human Leukocyte Antigen (HLA) region. This is the antigen that we
have on each of our own cells that indicates to the immune system that
a molecule belongs to the body and is not a foreign substance. There
are different configurations which scientists have classified. We
know that persons with certain classes are more prone to developing
CD. When certain wheat, barley, or rye peptides are present in
genetically-susceptible subjects, the cells of the immune system are
activated. Our macrophage cells activate other cells which either
produce antibodies or release substances which can cause damage to the
intestinal lining and tissue.
There was a research study done in which celiac patients on a
gluten-free diet (GFD) were challenged with a single dose of gluten.
Prior to and five hours after the gluten challenge, lactulose and
mannitol (sugars used to examine the leakiness of the gut) were given
to the patients. There was an increased amount of lactulose found in
the urine. This indicates that the intestine became permeable so that
the lactulose was able to pass through the intestine into the
bloodstream and then to the kidneys. Therefore, it is assumed that
other toxins can also enter the bloodstream from the intestine if the
lining has become leaky. This continuous toxin load may result in
diseases in other organs, such as the liver, thyroid gland, brain etc.
The single gluten challenge also resulted in a rapid increase in the
numbers of different immune cells in the small intestine.
Dr. Horvath discussed the "Celiac Iceberg" of symptoms. Patients who
have typical symptoms represent the tip of this iceberg. Most of
these patients will be diagnosed although significant delay may occur.
Those who are "under the water" have atypical symptoms such as
osteoporosis, diabetes, short stature, dental problems, etc. Then
there are those who have no symptoms (silent disease) but have
positive blood tests; in these individuals CD may manifest later in
life.
People who have CD without clinical symptoms may have good intestinal
compensatory mechanisms. Either the lining of the intestine repairs
itself because they don't regularly ingest gluten, or the lower part
of the intestine which is not yet damaged is able to take over the
function of the damaged upper part. Those persons with symptoms
usually have more surface of the small intestine damaged and the rest
of the intestine is not able to compensate for the decrease in the
surface area needed for food absorption.
The mortality rate for those celiacs who are not on a GFD is twice as
high as the rate for the general population. Malignancies and
autoimmune disease are responsible for this increase. It has been
proven that there is no increase in the mortality rate if celiacs stay
on a GFD. Other complications of untreated CD include short stature,
high grade T-cell lymphoma of the small intestine, carcinoma of the
mouth, esophagus, and small intestine, fibrosing lung disease, and
neurological diseases.
People who are at high risk for CD include relatives of the celiac
patients and people with selective IgA deficiency, short stature,
certain dental enamel defects, Down's syndrome, iron deficient anemia,
rheumatoid arthritis, Type I diabetes, infertility, miscarriages,
recurrent abdominal pain, irritable bowel syndrome, chronic diarrhea,
and epilepsy.
The original plan of the Center for Celiac Research was to have
regional centers throughout the United States. These centers would
have nurse practitioners who would organize screening programs and
follow the patients and their compliance to the diet. These centers
would also be the focal points for support groups. To date, in the
absence of financial support, these regional centers have not been
established.
The benefits of the celiac screening program are numerous. The most
important outcome is an earlier diagnosis and therefore less
intestinal damage. There would be federal support for the diet and
gluten free drugs. There would be an improved diet food supply.
There would be free screening of first-degree relatives. There would
be more and stronger support groups. Insurance companies would
recognize that screening for CD reduces long-term health costs.
Doctors will have more awareness. There would be more knowledge about
the protean manifestations of CD in the United States. Physicians
would be able to have their research published in various journals
which would increase public awareness.
Thus far, approximately 9000 people have been tested. New statistics
shows that 1 in 160 healthy people may have positive antiendomysium
and antigliadin antibody tests. Dr. Horvath expects that at least 1
out of 11 of the first and second degree relatives of diagnosed
celiacs will have positive antibody tests and require biopsies.
Return to the Table of Contents
Finding Gluten-Free Pharmaceuticals
-----------------------------------
by Anne Laginess, PhD
summarized by Tom & Carolyn Sullivan
Highlights of a talk by Pharmacist Anne Laginess, given at our March
13th meeting.
Anne has spoken to our group before and educated us on how to tell if
pharmaceuticals are gluten-free (GF) and what to look for to protect
ourselves.
Pharmacists, in general, may be knowledgeable about GF products but
probably are not. What they are knowledgeable about is ingredients
and how to investigate them.
More gluten is being eliminated from pharmaceuticals each year as
various allergy reactants are removed and the formulas are changed.
Get the package insert and check the ingredients.
The second item in a package insert, right after the chemical name, is
the list of ingredients. The listing of inert ingredients or
excipients is the area to check. If the word or words STARCH,
VEGETABLE, PROTEIN, or MALT appear without any source listed, check
them out.
In the U.S. in FOOD PRODUCTS ONLY, maltodextrin is GF by FDA
regulation. We do not know if this is true for pharmaceuticals. So
maltodextrin in prescriptions may or may not be GF if it is made in
the U.S.; and if it is imported, the source is probably not known.
Check it out.
There is practically no new published data on GF pharmaceutical
products. There was a 1983 study of U.S. manufacturers; a 1985 study
of Canadian manufacturers; and a 1987 study which updated the 1983
listing of U.S. manufacturers. Since then, only the controversial
Duke University gliadin assay study has been performed and it has
never been repeated or replicated so the results remain unsupported by
other studies.
Anne indicated that there are many sources of information regarding
prescriptions and their ingredients. The package insert is the first
and is usually available from a pharmacist just for the asking. The
Physicians Desk Reference (PDR) is usually available at a medical
library and is essentially a book of package inserts where one could
look at ingredient lists. The PDR also provides the FDA-approved
usage for a drug and a list of manufacturers and their phone numbers.
(Note: There was a list of pharmaceutical manufacturers and their
phone numbers in the new member packet you received when you initially
joined TCCSSG.)
Anne also recognized the internet as a powerful reservoir of
information. However, both she and Dr. Alexander were quick to point
out that not everything you find on the internet is true or applicable
to your situation. One must be very cautious and KNOW YOUR SOURCES.
Not all internet sites are to be trusted.
Here are some of the sites that Anne has visited and what she found
available at each::
http://www.celiac.com--This site has many explanations, links,
recipes and references. There is also a safe ingredient list, a
safe additives list, and a forbidden list. [Note: This is a
personal site developed and maintained by Scott Adams.]
http://www.csaceliacs.org/pharmaceuticals.html--This site has some
advice about medications; where to find information about
ingredients in medications; a discussion about excipients; and a
six-page list of food/drug and drug/drug interactions. [Note:
This is part of the official website of CSA/USA, the national
celiac organization of which our group is a chapter.]
http://www.idsl.net/celiac/day2day/d2dpg2.htm--This site has a food
list with a lot of excipients listed, some of which are explained.
[Note: This is a personal site developed and maintained by a
family referred to as Clan Thompson.]
http://www.idsl.net/celiac/day2day/d2dpg6.htm--This site lists phone
numbers for food manufacturers and pharmaceutical and nutritional
companies. [Note: This is a personal site developed and
maintained by a family referred to as Clan Thompson.]
http://www.idsl.net/celiac/day2day/d2dpg8.htm--This site lists
prescription drugs that were checked during June of 1999. [Note:
This is a personal site developed and maintained by a family
referred to as Clan Thompson.]
http://geocities.com/HotSprings/Spa/4003/gf-meds-toiletries.html---
This site lists GF medications, toiletries, and household products
and was updated Jan. 18, 2000. [Note: This is a personal site
developed and maintained by Abigail Neuman.]
http://www.geocities.com/gluten_rx/gluten.html---This site has a list
of GF medicines and some which contain gluten; a list of
pharmaceutical manufacturers who claim to be GF; and a list of
pharmaceutical manufacturer phone numbers. [Note: This site has
the same information that Steve Plodgett provided at the Columbus,
Ohio conference in November 1999 and authorized our group to
reproduce for the benefit of our members.]
http://www/stokesrx.com/celiac.html---This is the site for Stokes
Pharmacy in New Jersey. They will answer questions via e-mail and
they have a GF medicine guide for sale. [Note: Stokes Pharmacy is
a compounding pharmacy but you can usually find comparable products
which are GF.]
http://www.fda.gov---This is the website for the Food & Drug
Administration.
http://www.ncbi.nlm.nig.gov/pubmed---This site allows Medline
searches for articles published in medical journals. It provides
references and frequently provides abstracts.
In a discussion about the GF status of products, Anne noted that
because a particular drug product is a brand name or a generic does
not determine if it is GF or not. Either one can or can not be GF and
the status of some products may not be able to be determined at all
for any number of reasons. From a practical standpoint, a patient may
have no other option than the one drug; however special drug
compounding, just to have a GF product, is probably not a necessity.
The question was raised about what to do for a diarrhetic reaction to
antibiotics. Anne suggested a change in the drug if its usage is long
term. Dr. Alexander agreed that the drug should be avoided if
possible. However, most antibiotics are for short term use and if
necessary, he recommends Citracel at bedtime or Immodium during the
day if needed.
If diarrhea occurs suddenly and is not traceable to a drug, Anne
strongly suggests scrutinizing one's diet for gluten.
As regards many health food store products and over the counter
products, Anne notes that many are considered foods and there are no
studies to verify any claims or efficacy. She recommends both
minimizing their use and checking the source of the ingredients.
Anne promotes what she describes as the "simple, common sense
approach", particularly for celiacs.
* Eliminate unnecessary items from the diet. Do you need a diet
pill, a mood pill, a memory pill, etc? Good diet and exercise are
often a much better solution.
* Seek alternatives. Would a salt water gargle do the same as a
throat lozenge? Do you need a cold tablet to handle all five flu
symptoms rather than one to handle just your runny nose?
* Never be the first, or the last, to use a product that may help
you. Side-effects and effectiveness become more evident after a
medication has been available for a year or two.
Return to the Table of Contents
Celiac on the Internet
----------------------
by Jim Lyles
At our April meeting, I gave a presentation on how to find
celiac-related information on the internet, including some tips for
getting online. The entire presentation is itself available online at
either http://www.tir.com/~lyles/slideshow.html or
http://www.enabling.org/ia/celiac/slideshow.html. If you already
have internet access then I'd advise you to visit one of these web
sites, as you will be able to directly "click" on links to all the web
pages in the presentation.
For those that do not already have internet access, I will share with
you the first part of the presentation. Hopefully this will give you
enough information to get started at the library, a friend's house, or
on a new computer of your own.
Getting Online
--------------
1. You can "borrow" access:
* Many libraries now have internet access available for their
patrons.
* College students nearly always have internet access.
* Many businesses have internet access, and some allow personal use
during lunch breaks and after hours. (But check first--many
don't!)
* Borrow some time on a friend or relative's computer (and perhaps
some of their help in getting started).
2. From your home:
* Computers have come down in cost. You can now get an "internet-
ready" computer for $1000. Check out:
-- Computer superstores such as CompUSA
http://www.compusa.com/. The "Store Locator" feature is
useful for finding the nearest store.
-- Discount electronics and appliance stores such as Circuit City
http://www.circuitcity.com/, Best Buy
http://www.bestbuy.com/, and Radio Shack
http://www.radioshack.com/. Many of these web sites also
have a "Store Locator" feature.
-- Mail order computer companies such as Gateway
http://www.gw2k.com/, Quantex http://www.quantex.com/,
Micron http://www.micron.com/, and Dell
http://www.dell.com/.
* What about all those "free" computers you are seeing ads for?
Well, "free" is a little misleading. They all require you to
commit to 36 months of an internet service provider, at about $22
per month. Plus, the computers are lower-end models that may not
have all the features you'll want. Still, if the computer and
the 36 month commitment suit your needs, you may want to take
advantage of one of these offers.
* Your computer needs to have a modem. Most new computers come
with a 56k modem, but even a 33.6K modem will do the job. You
may also want to consider installing a second phone line for the
modem, though you don't have to. (I use one phone line for both
internet access and regular phone calls.)
* For full web access, you'll need to find an Internet Service
Provider (ISP):
-- National online services such as AOL http://www.aol.com/,
Compuserve http://www.compuserve.com/, and Prodigy
http://www.prodigy.com/ provide full internet services as
well as their own services for $20-22 per month.
-- National ISPs such as A+Net http://www.aplus.net/, AT&T
http://www.att.com/home/, EarthLink
http://www.earthlink.net/, Eisa.com http://www.eisa.com/,
GTE http://www.gte.net/, Spire http://www.spire.com/, and
RCA World Net http://www.rcaworldnet.com/ allow you to
connect throughout the USA for $15-25 per month.
-- Local providers are typically $15-20 per month. To find a
provider in your area, visit http://www.thelist.com/.
-- FREE ISPs are now available, but you have to put up with ads.
Some are more obnoxious than others. Juno
http://www.juno.com/ is one that I have tried, and I did not
find it too objectionable. (Plus, they offer a "premium"
service, without ads, for less money than the other national
ISPs.)
Another new free ISP is FreeLane
http://freelane.excite.com/.
A list of many of the other known free ISP providers in the
USA can be found at http://freeisps.4mg.com/usa.html, along
with the two or three they currently recommend.
* Whichever ISP you choose, make sure that there is a local access
number so that you will not have to pay long distance charges
each time you go online. If you live in or near a major city,
this will not be a problem; but if you are isolated out in the
boonies somewhere (like I am) then you may have fewer ISPs to
choose from.
Can You Believe What You Read?
------------------------------
As you find information on the internet, keep these points in mind:
1. Anyone can say anything. It is easy to make things look slick and
"official" on the web.
2. There is a lot of "stuff" out there on the internet; how do you
sort the good from the bad? When reading something on the
internet, ask yourself some questions:
* Does the article include references to other sources, and/or
links to other internet sites?
* Are professional credentials included?
* Does the article exclusively tout a single company or its
products?
* There are no silver bullets or cure-alls. Be leery of any web
page that claims otherwise.
3. Before acting on any information, verify it with other sources.
And make sure those sources are actually independent, not connected
in some way.
The remainder of the online presentation contains information about
celiac-related e-mail lists and web pages, medical web pages, finding
resources for other medical conditions, and some web pages of general
interest. For example, there is a web page that lists celiac-friendly
inns http://www.innseekers.com/feature.htm. So once you get started
on the web, head over to http://www.tir.com/~lyles/slideshow.html or
http://www.enabling.org/ia/celiac/slideshow.html and check out the
rest of the presentation.
Return to the Table of Contents
What's My Diet?<2>
------------------
by Janet Rinehart
This article originally appeared as an editorial in the
January/February 2000 issue of the Houston Celiac-Sprue Support
Group's newsletter. Janet is the Past President of CSA/USA and a
member of the newsletter editorial committee.
I have attended every CSA/USA conference since plus some other
national conferences since my rediagnosis of celiac disease in 1998.
I have learned a lot of basic information about the disease and diet
issues. However, among all the details there are still some
contradictory and confusing issues remaining. I want to discuss them
with you.
Unfortunately, there are few absolutes in dealing with our diet. Yes,
we cannot eat wheat, barley, rye, spelt, triticale, and kamut, for
certain. We know that oats has far less "gluten" than the others
listed. Various researchers have and are making studies on celiac
patients with regard to ingesting oats safely. The studies I have
seen had small numbers, with patients dropping out of the study for
questionable reasons, and there have not been any long- term study
results. All researchers and physicians are still saying that eating
an abundance of oats is probably still not wise, although we don't
know about small amounts (like one bowl of oatmeal a week). Eating
oats is a personal decision, but I personally don't do it. Other
alternative grains like amaranth, buckwheat and quinoa are not
biologically close to the wheat family. Technically, buckwheat and
quinoa are fruits. Some quinoa manufacturers have tested their grain
for gluten and found none. Quinoa grain has an outer shell, saponin,
which is bitter and can have some adverse digestive effects, if not
processed correctly. However, we now have such a world of great
gluten-free recipes using basic rice, tapioca, potato starch, bean and
sorghum (Jowar) flours, that we really do not need to invest in any of
the other alternative flours. This is a personal decision.
Jean Guest, R.D., talked at the [1999] CSA conference about certain
prolamine sequences in connection to the grains that do contain
"gluten". She found research to support that certain prolamine
sequences do occur in wheat, barley, rye and probably oats to a small
degree. However, other alternative grains like amaranth, buckwheat
and quinoa have not been tested in terms of prolamine sequences. Dr.
Peter Ernst [himself a celiac--ed.] said to the Houston chapter in
November that not only do grains have to have certain prolamine
sequences to be toxic for celiacs, but they must have certain shapes
to be recognized by the cells. Jean did not address the shape issue.
This issue concerning prolamines is early in research and does not yet
tell us a complete picture of gliadin in terms of avoiding grains.
The best information we have at this point is from cereal chemists who
say these grains are not biologically close to wheat. Experimenting
with alternative grains is still a personal decision.
CSA included an article about "lectins" in the packet of registration
material, which basically warned people that food lectins might be
harmful to all people, especially to people with compromised immune
systems, notably seniors or young children. The article said plant
lectins are capable of damaging the intestinal epithelium. Lectins
are found naturally in many common foods like potatoes, tomatoes,
grains, legumes, many fruits, and canola oil. That is why CSA
believes canola oil is not good for celiacs; but it is not a gluten
problem. However, cooking at high temperatures breaks down the lectin
effects, and most foods are cooked. It is nice that CSA shares
research with us that might affect us as celiacs; however, I believe
this sort of information serves only to scare us unnecessarily and
further limit our diet at this time. If you find you feel better
without ingesting lectins, fine. This is a personal decision.
I have seen more and more research and documentation from chemists
these past couple of years about the distillation process in terms of
gluten contamination; i.e., there is little, if any, toxic gliadin
left after the distillation process. Ann Whelan for Gluten-Free
Living newsletter has researched distillation and finds that "...the
first reason why vinegar is not likely to be a problem for celiacs is
that wheat is rarely used as a starting material." (However, I
consciously avoid malt vinegar.) Ann's second reason is that "...even
if wheat was used, the gluten peptides would not survive the
distillation process. Thirdly, even if something went wrong and
gluten peptides did survive the distillation process, they would still
not be harmful to celiacs. Hands-on scientists who have an extensive
scientific knowledge base and who have done specific research that
speaks to this question say vinegar is safe for celiacs." As Nancy
Falini, R.D. has reported, celiacs and others with chronic digestive
inflammati on can have general irritative affects in the intestine
from alcohol. People can have personal sensitivities to many food
substances, aside from gluten. I personally order a vinaigrette
dressing when I am eating out, to seemingly no effects. Not worrying
about the salad dressing has made my restaurant outings easier. If
you find difficulty eating some food or ingredient, avoid it, but
don't blame every digestive upset on celiac disease. I have never
liked beer, as a celiac I personally would not drink it, but wines are
just fine. An occasional Margarita (not from a powder mix) is great,
too.
I believe it may be wise for DH'ers to avoid topical products with
wheat or gluten ingredients. Most doctors would say that celiacs do
not get any damaging gluten from topical lotions/shampoos. However, I
do try to avoid any hair products or lotions with possible gluten
contamination because there are so many other good products available
without gluten. Why push the issue?
I am not a very sensitive celiac or I adhere to my GF diet remarkably
well (or both), although I do get into some inadvertent gluten from
time to time (perhaps twice a year) with bathroom consequences,
fortunately short term. I avoid all wheat, barley, rye, spelt, kamut,
triticale and oats products, including those with wheat starch. I
look at all labels. I avoid modified food starch, HVP, TVP and HPP of
unknown source. I don't cook at home with canola oil, but I don't
worry if it is just one ingredient on a label. I don't worry at all
about lectins. I don't worry about vinegar (except malt vinegar) and
[distilled] alcohol. But I am careful of bouillon and prepared bases.
I investigate questionable sources of ingredients. I don't go out of
my way to avoid guar gum. (Guar gum can have laxative effects in more
than small amounts, but some vendors do use a little of this
ingredient.) I don't worry much about MSG [monosodium glutamate], but
I avoid an imported product if it has MSG, which is also proba bly
from a questionable imported source. I am not sensitive to dyes, that
I know of, and don't pay any attention to them. I note whether
unknown "artificial or natural flavorings" are at the end of a list of
ingredients, which means the amount is the least amount, and I might
decide to ignore these ingredients. In terms of medications, I
investigate thoroughly all those I take regularly and for long term.
If I need a medication for limited short term (like 1 or 2 pills), I
don't worry about the ingredients.
I cook a lot from scratch at home. I call manufacturers. I use GF
mixes from reliable GF vendors. I question and question in a
restaurant to be as safe as I reasonably can.
I follow the gluten-free diet to the best of my ability. I do believe
persistent failure to adhere to a strict gluten- free diet to be
counterproductive to overall long-term health. Your diet will
probably be slightly different from mine, depending on how sensitive
you are. And that's okay.. We have to live reasonably but wisely in
this gluten- filled real world. Just keep up the good work. If you
do have problems, consult your personal physician or a knowledgeable
dietitian. A detailed food diary is helpful for such a consultation.
I hope I have helped put some of the questionable issues into the
context of yours and my daily life. Good luck, dear friends.
Return to the Table of Contents
A Shot Worth Considering?<3>
----------------------------
by Ron Hoggan
[This article originally appeared last year in Calgary Celiac News,
published by the Calgary chapter of the Canadian Celiac Association
(CCA). Ron is a regional director for the CCA.]
More than a year after I was diagnosed with celiac disease, I had
occasion to visit a doctor who specializes in lung disease and
allergies. He prescribed a Pneumovax vaccine for me. When I picked
up the prescription from my pharmacist, I read the pamphlet. It
indicated that the vaccination provides protection against 25 of the
more virulent forms of bacterial infection that often lead to
pneumonia. Although I experienced some abdominal discomfort, such a
vaccine seemed a reasonable precaution, and I was pleased that the
doctor had prescribed it.
In a recent discussion with a fellow CCA member, I learned that he had
recently had the same vaccination, and his celiac disease was
diagnosed several years prior to mine. After some discussion, I
realized that this is an area where celiacs may need more information,
so I ran a search on Medline, which is an internet based service that
provides abstracts from most of the world's medical journals.
Although I have not yet read their full reports, two research groups
are recommending pneumococcal vaccine for people with celiac disease.
McKinley et al. state: "Vaccination of all patients with celiac
sprue seems appropriate."<4> They make this recommendation based on
their investigations of ten patients with celiac disease.
The second report focuses on the spleen's contribution to the immune
system. Abnormalities of the spleen are often found in celiac
disease. This may increase the danger of bacterial infections, and
their more serious consequences, for a small minority of people with
celiac disease. Sills recommends pneumococcal vaccination where the
spleen is compromised. This investigator not only mentions celiac
disease as a group for whom to consider this vaccination, but also
closes the abstract by saying: "Most deaths from hyposplenia-related
septicemia are preventable."<5>
If you have not been given this vaccination, I would like to suggest
that you contact your doctor for advice on this issue. Pneumovax
could offer an important health advantage to people with celiac
disease.
Return to the Table of Contents
References
----------
<1> _Gluten-Free News_, April 2000, vol. 5, no. 4, pg. 2, published by
the Michigan Capitol Celiac/DH Support Group, PO Box 1482, East
Lansing, MI 48826.
<2> From the Jan./Feb. 2000 newsletter of the Houston Celiac-Sprue
Support Group, pgs. 15-17, Janet Y. Rinehart, editor, 11011 Chevy
Chase, Houston, TX 77042-2606.
<3> Reprinted from _Calgary Celiac News_, 4th edition, 1999, Jo Anne
Murray & Bety Salewicz, editors. Published by CCA Calgary
Chapter, #7 - 11 Street NE, Calgary, AB T2E 4Z2, CANADA
<4> McKinley M, Leibowitz 5, Bronzo R, Zanzi I, Weissman G, Schiffman
G. _Clin Gastroenterol_, Mar 20 1995 (2):113-6.
<5> Sills RH. _Crit Rev Oncol Hematol_, 1987;7 (1) :1-36
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
Sue Gentilia
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 printed copies of this newsletter
(8+ issues per year), a shopping guide, and a new member packet full
of articles and useful information. Out of area subscriptions are
welcome. For subscription information, send a note to
tccssg@yahoo.com.
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