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PART 2: Negative Labeling Stories and Time Spent on Food Research
NEGATIVE EXPERIENCES REGARDING FOOD LABELING
RESTAURANTS
1. Applebees is incredibly insensitive to the needs of celiacs. They
care so much for the health of their customers that they wouldn't want
to endanger their health by publishing a gf menu…
2. TGIF's/Chili's and the like recommend 'we' don't eat there because
they can't guarantee there's no 'bad' ingredients intheir food.
FOODS
1. In response to request for information on gluten content of soups,
Westbrae foods sent an e-mail saying they could not tell me this,
except on a case by case basis, and to write back product by product and
they could check product by product. But, they then sent me coupons in
the mail for their products!
2. Many companies indicate on their web sites that they have customer
service contacts that can be made on-line, but when I've inquired about
the gluten status of foods at these sites, I seldom get any response at
all. This has happened with more companies than I can name.
3. One horror thing I've seen in Canada is the following: "Ingredients:
sugar, candy mix". What is "candy mix"? What is it made of?
4. I also hate something I see too often: "Can contain nuts, peanuts,
almonds, egg or fish". Coming from a salt bag, it's kind of humiliating.
That means they could use nuts, peanuts, almonds, eggs or fish to make
salt? Am I crazy or they just start saying the whole list just to make
sure we don't sue them.
5. Nature's Path Gorilla Munch "Gluten Free" Cereal - Although it is
labeled as gluten-free and the manufacturer claims there is no cross
contamination possibility, this product has made one list serve member
ill. Then she read in a newsgroup that the company had sent some
contaminated products from Canada to the U.S. because the U.S. labeling
laws were much less strict than Canada's…
6. Gulden's Mustard doesn’t list ingredients that would indicate gluten
content but according to the company it has gluten that was not visible
on the label.
7. The label-reading for a milk-free, egg-free diet is a cakewalk. If
it's in there, it's on the label. Heck, if eggs or milk are even used
in the facility it's on the label. At this time, reading a food label
will not tell you a product is gluten free. The absence of gluten on
the label does not equal an absence of gluten in the product. The
frustration and stress and time this takes is immeasurable.
8. I have DH and …when I was first diagnosed, I cleaned out my pantry,
using the most recent CSA guide as a reference. I had been warned that
the guide was not 100% guaranteed, because a company could change the
ingredients without warning or noting the gluten containing source on
the label. I started having my gluten-free pancakes and my supposedly gf
pancake syrup. I started to break out again, but I did not know what in
my pantry was causing the problem. I then called the syrup company, and
they told me that the recipe had been changed since the original call
made for the CSA guide. The caramel coloring contained wheat.
9. Unilever says it has too many different brands of food to have a
consistent policy on labeling. Some of their brands will indicate if
wheat, rye, or barley is present and others don’t. According to their
customer service representative, they have no plans to change.
10. Brachs says it doesn’t know which of its products contain gluten.
11. M&M/Mars has a list it will read over the phone but will not email
or mail the list.
12. Kitchen Bouquet, which is named as a key ingredient in Bette
Hagman's recipe for GF onion soup, now contains gluten. Customer
service representative required the barcode to tell me if it contained
gluten and said it was in the "modified food starch" which is not
listed as an ingredient on the label. Most likely it is in the
"caramel" if it is in an ingredient that is listed at all.
NONFOOD
1. The manufacturer of Clarinex told me that of course none of their
products contained gluten, however they could not vouch for their
suppliers and as such, indicated that it was my decision whether or not
to take the drug.
2. Mylan Pharmacies has been difficult to work with. I would
occasionally take Temazapam for insomnia (prior to being diagnosed with
celiac). After diagnosis and after being GF for 18 months, I took the
drug and became ill - went on and off the drug and became ill every
time the drug was used. I reported this to my doctor, my pharmacist and
to Mylan. Six months later I received a letter from Mylan informing me
that their products do not contain gluten and I could not have become
sick from their product. I no longer purchase anything from Mylan.
3. My son was prescribed Omnicef for an ear infection. Our doctor told
us to have it compounded to make it gf. It's still under patent so it
can't be compounded. The doctor had no other suggestions. Our local
pharmacist had no suggestions either, nor did he (or the doctor) even
know of a resource for me to seek this information. Keep in mind I'm
making all the phone calls (several hours' worth, I'm not kidding) while
my husband is at work, my toddler is miserable with pounding ears and no
antibiotics on board, and the little baby is breastfed and wanting to
eat frequently.Finally I got ahold of Stokes Pharmacy in New Jersey who
have a program to tell patients if a drug is gluten free FOR A $20
FEE!!!!! Eventually I found a pharmacist there who told me what I could
use for my son and I relayed that info to my pharmacist and doctor.
Then I paid $42 to Stokes Pharmacy for them to mail me a copy of the gf
drug book so that I, the patient's mother, can tell the doctor and
pharmacist what options my son has for oral medication.
4. A few months ago a list serve member purchased Lasix pills to take
for high blood pressure. The pharmacist said the medicine was
gluten-free, but upon examination of the assorted papers that came in
the package with the bottle of pills, there was the word, "gluten"
spelled out in conspicuous, large letters, so the medicine was
discarded. Eventually the list serve member learned that this was a
notation the pharmacist made to indicate that the patient was gluten
sensitive. It would have been easier to know what to do if there had
been an accurate ingredient list on the label.
TIME SPENT ON FOOD RESEARCH
1 person spends no time researching food and instead cooks and bakes
everything from scratch.
1 person spends 2 hours a week shopping at specialty store.
1 person spends 15 hours per week reading and researching on the
internet (listserv & delphiforum as well as company websites looking for
information), and 30 minutes per week more on grocery shopping than
before diagnosis foor celiac in order to read all the labels. Makes an
average of two calls per week for food items and five calls per month
for pharmaceutical items. Each call takes approximately 15 to 20
minutes to complete.
1 person writes approximately 10 emails per week requesting information
from companies.
1 person spends many hours trying to find the gluten free products that
can eat. Many long distance calls calls to companies questioning their
product. It seems like medications are very difficult to find out if
they are gluten free. A very good idea is for hospitals, rest homes,
resturants, etc to offer gluten free menus!!!
1 person spends 3 additional hours a week in shopping at specialty
stores to find gluten free items; 1/2 additional hour/week at regular
grocery store checking labels; average of 2 calls/week on gluten content
of food; average of 3 hours/week checking listserve and websites for
gluten content of food.
1 person spends about 5 hours a week researching gf items. Includes the
extra minutes at the grocery store making sure staple items, or new
ones, are gf.
1 person drives to a store 45 minutes farther than her local grocery
store because they have extensive lists of what they carry that is GF.
* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *
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