<<Disclaimer: Verify this information before applying it to your situation.>>
First I would like to thank everyone for all your input that you have
already given me. Yall have been wonderful. I wanted to take the time and
thank you by summarizing the e-mails I received. Even the "oldies" to the
list may not know some of this so it may help everyone.
To start I have been given many wonderful websites. Here is the list and
many of which more than one person has recommended them to me.
Go to www.delphi.com sign up for the celiac list. They have a long
list of things that contain gluten and hidden gluten.
http://www.glutenfreeinfo.com/Diet/glutenfreeinfo.htm
http://www.geocities.com/HotSprings/Spa/4003/gf-ongoing.html
http://www.celiacdatabase.org/
http://www.celiac.com/
www.finerhealth.com
read the SpruNik Press (here's their web address:
http://www.enabling.org/ia/celiac/index.html#nwsspn -- lots of good info
-- look at the back issues ). Here's another web page I find useful
also: http://www.geocities.com/HotSprings/Spa/4003/gf-index.html -- this
site shows products by brand name -- very useful
.
For an excellent in-depth explanation of the tests and what they mean,
try this website: http://www.enabling.org/ia/celiac/diagtst.html#US For
a new type of less invasive testing you can try this website also. This
Dr. Fine seems to being enjoying a good reputation among other celiac
docs: www.finerhealth.com and www.enterolab.com
http://www.fastlane.net/homepages/thodge/MILKALT.txt
http://www.panix.com/~nomilk/
http://www.healthy.net/library/articles/galland/Leakygut.htm
http://www.ajcn.org/cgi/content/full/69/3/354#SEC8 = Every celiac should
read this first. A very helpful article by Dr. Murray, perhaps the most
knowledgeable of celiac docs. http://www.celiac.com/forbiden.html = This
is a useful list of foods and additives that are safe, and those that
are not safe for celiacs. I printed off the unsafe portion and carried
it in my billfold for the first two years after I was diagnosed so I
could check any list of ingredients against it.
http://ojr.usc.edu/indexf.htm?/sections/resources/99_stories/
points_050799.h
= This erence Files maintained by the listowners of this list.
http://www.geocities.com/HotSprings/Spa/4003/gf-ongoing.html = This is a
good place to start your shopping: it's a long list of food products
that are gluten free, from baby food to tomato pastes and sauces.
http://www.aafp.org/afp/980301ap/pruessn.html = an excellent article:
"Detecting Celiac Disease in Your Patients," by HAROLD T. PRUESSNER,
M.D., University of Texas Medical School at Houston.
http://www.glutenfree.org/ = Don Wiss's site has a lot of information
and links to other helpful sites. http://csaceliacs.org/ = This is the
Celiac Sprue Society's site. You may want to order their 89 page CSA
commercial products listings booklet. It lists a lot of brand names of
GF products, and it is a great help at first. Some celiacs do not trust
the organization or the booklet implicitly so they phone and check out
everything before they eat it, but it's a good place for beginners to
start , rather than starting blind with no idea as to what may or may
not be GF: http://www.glutenfree.com/contacts2.html#G = This offers
numerous sites where you can check on just about anything, including
some sites where you can order GF products.
http://www.geocities.com/HotSprings/Spa/4003/gfindex.html = Another good
site that has extensive lists of GF foods, medicines, beverages, etc.
http://www.stokesrx.com/ = You can order Stokes book, A Guide Through
the Medicine Cabinet. It will tell you whether most medicines have
gluten or lactose in them.
Or you can have them prepare GF or lactose free medicines for you.
http://www.enabling.org/ia/celiac/sn/spnk9701.html#trier = Doctor Murray
explains some of the symptoms of celiac disease.
For Canadians, either: http://www.celiac.edmonton.ab.ca/ = Canadian
Celiac Association or http://www.celiac.ca
Some books and other sites that were recommended:
Recommended books: Against the Grain by Jax Peters Lowell; Prescription
for Nutritional Healing by Balch & Balch; any or all of Betty Hagmans
Gluten Free Gourmet series; Brain Allergies by William Fillpot and
Dwight Celiata; Allergies & Your Family by Doris Rapp; The Impossible
Child by Doris Rapp.
Here are some companies (US and Canadian) where you may order GF food by
mail:
Ener-G Foods: http://www.energ.com/nrg2.html Gluten Free Pantry:
http://www.glutenfree.com/toc.htm Gluten Free Mall:
http://www.glutenfreemall.com/ Kinnikinick: http://www.kinnikinnick.com
Miss Robens: http://www.geocities.com/HotSprings/Spa/4003/gfindex.html
http://geocities.com/HotSprings/Spa/4003/gf-meds-toiletries.html =
website with GF medicines and toiletries.
SAVING THE BEST AND MOST IMPORTANT FOR LAST:
And here is a final useful site that lists and explains some of the many
conditions that can resemble celiac, and some that are associated with
celiac: http://www.celiac.com/similar.html \ And finally, if you want a
good website with excellent pictures and explanation of celiac disease
and dermatitis herpetiformis that is written by a celiac expert at the U
of Tex Med School in Houston and intended as information for doctors to
tell them how to diagnose celiac disease, take a look at the following
website: http://www.aafp.org/afp/980301ap/pruessn.html .
For a website that explains the newest and most accurate blood test for
celiac, and for the most reliable and latest statistics on the
prevalence of Celiac Disease, see the URL:
http://www.celiaccenter.org/frm_research_update.htm .
For a long list of foods that are both gluten free and dairy free,
originally intended for parents of autistic children, but helpful to
many new celiacs, see the following URL: http://www.gfcfdiet.com/foodlist.htm
Pharmaceutical companies -- http://www.needymeds.com/companies.html A
brief list of prescription drugs that are GF --
http://www.clanthompson.com/day2day/day2day.htm
Here is a good commercial foods list you will want to bookmark:
http://www.geocities.com/HotSprings/Spa/4003/gf-index.html Also bookmark
the meds list for an emergency: http://www.geocities.com/gluten_rx/
gluten.html A handy archive search from the on-line support group
http://maelstrom.stjohns.edu/CGI/wa.exe?S1iliac&D=0&T=1&H=0&O=T (fill in
the blanks with a key word or product)
two books -- Against The Grain by Jax Peters Lowell (Henry Holt), a
complete guide to coping with Celiac with vast resources and Gluten-Free
Fast and Easy by Bette Hagman (Henry Holt). Between the two you've got
all you need to cope and all you need to cook.
Stokes Pharmacy of New Jersey has an excellent book out 'A Guide Through the
Medicine Cabinet.' It is my understanding it is a little pricey but your
nutritionist might want to check into it. It also has information for
Lactose Intolerance Medications. (If you need more information on this book,
contact GIG as noted below.)
If you need additional help, I suggest you contact Gluten Intolerance
Group(tm)
(GIG(tm)) in Seattle, WA for information.
Gluten Intolerance Group(tm)
15110 10th Ave SW, Suite A
Seattle, WA 98166-1820
Telephone: 206-246-6652
Fax: 206-246-6531
Website: www.gluten.net
Email: [log in to unmask]
Some great advice I received:
Don't lick envelopes to seal them. That glue probably has gluten.
Basically, whenever you check out a food, I feel it is wise to call the
manufacturer. Usually you can find an 800 number on the package. If not,
call information. Sometimes things that are run on conveyor belts, which
look GF according to their ingredients, might get contaminated due to
dusting of the lines with a flour to avoid sticking. This little hidden
ingredient can cause you a great deal of pain. You need to ask the
manufacturer about something like this, as they may only look at their list
of ingredients and tell you no.... such as Frito-Lay Chips. They are GF,
but their lines also run gluten products. Even tho they clean their lines
between runs, you cannot be assured you won't pick up some contamination.
You may find that you already know more than your dietician that you are
seeing. Most of us do. Most are completly clueless.
Don't let this discourage you - doing the diet is still so much better for
you than cheating. It is a huge inconvenience to deal with, but still
that's all it is - an inconvenience. & well worth the trouble. Take care &
good health to you!
Envelopes, stamps, etc.
Check labels on any and all of the following!!! Some brands are OK,
some are not. medicines!!! sour cream cottage cheese yogurt smoke brines
for smoked fish, meats creamed corn (I just discovered that S & W is the
only one at Safeway that edible!) soups - including broth! seasonings
(seasoning salt, etc.) salad dressings - including mayo Anything fat-
free cheese spreads hummus anything with soy sauce spaghetti sauce
french fries, tater tots, etc. (seasonings they're coated with to brown
better) ham, sausage juice blends ice cream tea blends flavored coffees
candy popcorn (again seasonings, fake butter) margarines - fake butters
any malt beverage any prepared food - chili, soup, stew, etc.
Hope this helps someone. Again thank you all.
Cathy (Cat)
in North Carolina
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