***Question Number 12b - Comments about the statement: The term ***

***\"gluten-free\" should be used ONLY on products that do NOT ***

***contain any wheat, barley, rye, oats or any of their derivatives.***

**Number** **12 b - Comments**

2 ALL PACKAGING NOTE \'CONTENT\' OR \'NO CONTENT\'

5 I was once told in a \"Wild Oats\" store in Colorado that
\"gluten-free\" could be a certain low percentage of gluten might be in
the food. They did not

understand why this concerned me!

6 if products contained Any Wheat, Barley, Rye, or Oats They wouln\'t BE
GLUTEN FREE

8 Gliadin is also present in other items? -

10 This should be used for foods and Health & Beauty items.

15 Labels need to be more specific, as some ingredients are
questionable. \"Gluten free\" a must on all labels.

22 Celiacs need a clear, sure fire way to know that manufactured
products are guaranteed safe for them.

28 I appreciate the new labling with \"contains wheat\" in bold letters.

35 Read all labels - sometimes gluten is hidden

36 I currently have eyelid parasites - stubborn!

37 Some people tolerate oats

39 Thanks for your good info

46 My sister also is affected by Gluten. My son died last year from
T-cell Lymphoma Attributed to Gluten

50 \"An inch & a mile\". No leeway.

54 IF I DON\'T KNOW THE CONTENTS - I DON\'T EAT IT

55 Note: I eat foods (bottled sauces & spices) with distilled vinegar
and consume cistilled spirits (clear) without difficulty.

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 1 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

56 Term \"gluten-free\" should be on all pills, medications, foods and
other (shampoo, make-up - tooth past etc. EVERYTHING

61 Should also be used on products with gluten additives & other than
grains

63 and run on a didicated lin or otherwise noted.

64 MANY MORE COMPANIES NEES TO LABEL PRODUCTS RE. GLUTEN

65 ? - Aren\'t oats now connsidered GF?

70 Oats are not a problem

77 I have to look deeper than gluten-free; I cannot tolerate distilled
vinegar, flavorings, etc.

83 Some so-called \"gluten free\" products contain oats. So I MUST read
all labels. See comment.

Comment - I stopped eating oats and whole wheat cereals & breads,
probably about 4 - 5 years before I was diagnosed because they caused

bloating and loose stools. It was embarassing to dicuss with physicians
at that time. Thank God I lost my shyness!

86 A legal standard for the term \"gluten free\" is needed. I have
already been misinformed by a manufacturer claiming their
dextrin-containing product

was \"definitely gluten free.\"

88 After 50 yrs. With this disease , it is still hard to know many foods
containing gluten.

91 They should list on all foods - whether gluten free or not

92 At my age of 90 I can\'t remember all the dates

97 Modified foood starchoften has gluten in it. Sometimes fat free food
causes discomfort.

102 we need to drop disguises, & euphemisms

104 Thank you for your help

106 waitresses should be alert to \"gluten-free\"

109 10. I did try some steel-cut oats made in a factory dedicated only
to oats about 1 yr. Ago. Did not have diarrhea, but did get dizzy and

lightheaded. Tried it one more time w/same results; so I have not eaten
oats since.

110 Think all ingredient lists should be exactly specific. Think ALL
PRODUCTS should be specific

120 and not manufactured in a plant that also processes wheat!

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 2 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

121 At the present time there is no test for \"zero\" gluten. So
designation of zero gluten free is not reasonable.

123 also NO cross contamination

126 WHEN WILL OATS BE UNIVERSALLY TAKEN OFF FORBIDDES LIST?

128 Please stress the importance of this.

134 many of the condiments are taboo.

138 Having DH I am extremely careful what I eat

141 Probably, because who knows origin of oats? I was recently
endoscoped, normal exam with intact villi, I eat McCamm\'s oats about
1 - 2x/wk.

143 I try no matter where I am to eat Gluten free foods. If I do get
some it would be most likely cross contamination in restaurants. I am
careful

wherever I eat outside & inside my home.

144 It is SUCH a thrill to see a product in a supermarket marked
\"gluten-free\"

145 Foods & products that do not contain any wheat rye barley or oats

148 DON\'T KNOW IF OATS SHOULD BE INCLUDED

150 Modified starch\" should be more specigic.

156 CHEERS TO \"TRADER JO\"

158 I\'M NOT SURE WHAT ALL THOSE DERIVERATIVES ARE.

159 do cot contain any \"measureable\" WBRO

165 THANK YOU!

167 malt & dextrin should be eliminated, too

169 as stated in no. 12

171 I don\'t think Buckwheat whould be allowed.

173 PLEASE SEND COUPONS OR FREE STUFF!

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 3 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

177 If oats can be proven uncontaminated, they could be labelled
gluten-free

191 The food labeling needs improvement.

196 Should also state containers used w/other products (some are
listing)

199 OR MANUFACTURED ON TMACHINERY THAT ALSO MAKES WHEAT PRODUCTS.

203 100% - I have so much trouble with RX antobiotics, trying to find a
blood pressure medicine & eating out is almost always an awful
experience &

next day miserable

204 Would like the word modified food starch, BE MORE SPECIFIC

205 I feel strongly about this

207 \"modified food starch\" labeling is \_\_\_\_\_\_\_\_! \[could not
read\]

208 any foods without wheat, barley, rye, oats. My wife and I read thes
booklet completely - We read the research-

209 guessing canbe hazardous to your health

210 Why would gluten free be on something if it contained gluten?

213 There are sulfites and artificial colorings, etc that should be
considered

214 Personally I would like to have quinoa, teff, spelt, and other
grains included, but I realize that not everyone has my extreme
intolerances.

217 What is the point otherwise?

218 STOP LABELING \"LESS THAN 2% MODIFIED FOOD STARCH\" ANY IS ALL. BIG
PROBLEM W/VINEGAR - ALMOST ALL NOW USED IS

\"DISTILLED\"

223 Eat to live - not live to eat.

225 But - not so if produced in non gluten free surroundings

226 Oats may be an exception for some

228 And are manufactured in a GF facility

231 I hope the results of this survey will be published in a future
edition of Lifeline.

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 4 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

235 I feel more comfortable when I see \"gluten-free\" on the label.

240 Should also say if product processed in place where non-gluten free
product s are processed.

244 Each celiac seems to have their own threshold of sensitivity.
\"Gluten-Free\" should protect the MOST sensitive.

245 I have the most trouble with cosmetics & perfumes

255 If only ALL products would specify gluten or \"gluten-free\"!

256 I recently bought \"wheat free\" cereal bars and only noticed after
that it contained barley flour which was annoying

257 Van Frozen Gluten-Free waffles have made me sick twice, 1 year
apart.

261 My 17 y.o. son also has Down Syndrome. He follows the diet
faithfully. He also has multiple autoimmune disorders.

272 Need better labeling on what indrediants are made from.

274 I prefer just \"wheat, barley, rye.\"

278 The better labels specify which grains and derivatives are not in
product, some \"GF\" labels also refer to corn or other safe grains

282 Considering Oats if clean

283 always tested negative until Dr. Kenneth Fine\'s lab dignosed

285 or the possibility of cross contamination

289 Omit oats from above list.

290 \"0\" amt of gluten in the food product.

291 Need more into on preservatives & additives that are not easily
known.

292 Nothing is totally free.

294 UNSURE ABOUT OATS

295 \[survey was badly torn in mail - much of the answer to this
question was missing.\]

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 5 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

296 and the manufacturer should test the products for contamination.

298 \"any\" is the key term here - stick to zero tolerance policy

299 By the way - I never got pregnanta, but I never pursued why. Having
potatoes at a restaurant meal will often coat my stomach enough so that

unkonwn offenders don\'t hurt me.

300 NO WROB any form ot amount verified by explicit ingredient listing
on products

302 AND MALT? MUST BE CLEARLY LABELED WITH STIFF PENALTIRS OTHER WISE.

304 should be used only w/wheat, barley, & rye

314 Ther new food labeling bill passed by Congress should have included
foods w/gluten

323 I\'m still new at this and still not sure about what is causing
occassional symptoms.

324 if it says \"gluten-free\" I shouldn\'t have it to read the
ingredients - but I still do

325 Perhaps this strict definition will change processing of oats in
this country.

326 FDA needs to require better labeling!

334 In just 1+ years since diagnosis, I\'ve seen a tremendous change in
food labeling. Everyone seems more aware, not just celiacs.

336 some celiacs cannot tolerate other grains. Ideally - ALL ingredients
will be listed - in plain English! Not scientific terms!

340 The diet is not unreasonable, why bother to tempt fate & eat things
that would make me sick? However, I\'m not a teenager, it must be
difficult for

them.

341 I hope no gluten in product - I can\'t say it\'s always
\"verifiable\".

345 All labels must be read. Many are not completely accurate.

347 If labeled \"wheat free\", but does not say \"gluten free\", I
question the product.

348 this would be very helpful

349 used when oats are contaminated w/wheat? I believe results continue
for contradictory or inconclusive.

353 NO WBRO - no exceptions

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 6 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

356 This would be valuabel information

357 The user should have the option of risk; NOT the producer.

365 Dr. Alessio Fasano recommended to the FDA that their definition of
GLUTEN-FREE be 20 ppm (TWENTY parts per million) as THE MAXIMUM

Threshold for GLUTEN in GF foods - NOT 200 ppm as some standards are. He
told us this in a lecture on 5 March 2005.

369 I call 800 numbers when in doubt

372 We take enough chances as it is

376 Thank you for the information you give.

382 I still have questions about products manufactured in facility that
manufactures products containing gluten, because of possible cross

contamination, but have used some of these & restaurants & homes are the
same when someone else prepares food

384 Isn\'t that what \"Truth in Labeling\" means??

388 NO WHEAT BARLEY RYE OATS OR DERIVATIVES

390 But also must state NO cross contamination in processing or
packaging

391 I am careful about products that say \"Does not contain wheat\",
generaly the product will be processed in a wheat processing place.

393 Where else would you put it?? All foods not WHOLE should be labeled

396 until oat processing in US is GF

404 GF should mean - NO gluten

406 IT WOULD BE HELPFUL IF ALL PRODUCTS WERE LABLED ONE WAY OF THE
OTHER. I.E.: \'GLUTEN FREE\' OR \'CONTAINS GLUTEN\'!

414 I feel oats are okay

416 gluten - free - should - mean - what - it - says

417 IF IT IS GLUTEN-FREE IT SHOULD BE GLUTEN-FREE

422 .03 can still affect some people

425 How about medicines, cosemetics, etc.?

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 7 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

428 Some items have the same effect as Gluten - example - Rape Seed.
(\"Gluten Free\" Product had Buckwheat in it.)

434 I sense that there is considerable controversy re: oats. We
certainly need to keep working on these issues with an open mind.

436 alternative terms for starches

437 I wish labels were more specigic - (modified food starch - tell me
WHICH starch!)

438 Issue with oats. I understand it is still ok.

442 GLUTEN FREE

443 The hidden gluten in (derivatives) ingred. Is hardest to moniter

445 There should be levels, such as contamination

446 ALSO HAVE INTERSTITAL CYSTITIS

449 Should be listed on all products that are gluten-free

450 If ther is a chance of contamination from a grain - machines not
designated for one particular product.

451 your newsletter was all the help I had for a long time. It has been
so great when I needed better understanding of this disease.

453 Pharmacists have trouble with this statement.

454 This should include any possibility of cross-contamination

455 WOULD LIKE TOSEE A STANDARD ALLOWING FOR \"UNCONTAMINATED\" OATS.

456 Avoid at all times - must read all labels tobe sure.

465 No Gluten at all

466 I EAT OATMEAL - PORRIGE) WITH NO ILL EFFECTS, I DO NOT EAT IT
ROUTINALLY BUT ENJOY NOW & THEN

468 Eliminates wheat oats barley and rye from my diet

470 also no cross contamination

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 8 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

471 Example; would help to eliminate products with HVP, HPP or modified
food starch that does not provide the source.

475 Products not containing any form of grain or by product harmful to
people with Celiac Sprue.

484 MY LIFE

GLUTEN TO ME IS POISON

485 Most Recipes - gluten-free - contain lactose!!

492 also, GF should mean product hasn\'t been in contact or on a line
with gluten products.

495 I think thry should use term \"gluten-free\" ONLY when made in a
gluten free facdility - not just contents.

500 it is just as helpfup for a product to declate it is made with
wheat, barley, etc. ingredients - it is a lot easier than reading
through the ingredient

list.

510 !

511 Reaction to non-food items due to Psoriasis. Believe Psoriasis
triggered by 1988 Surgery; CELIAC (undiagnosed) EXACERBATED BY 1998

SURGERY.

517 I don\'t eat out very often. Resterants are very helpful when you
explain about your special diet.

521 I am unclear about the status of oats

523 Untill the debate over oats is resolved, \"gluten Free\" should only
be put on things with out wheat, barley, rye & spelt.

525 I seem OK with goats milk.

526 should also say no contamination

527 I\'m very glad I finally heard of

CSA & joined

528 My 3 yr old dau also has celiac diagnosed by biopsy at age 23 mon.
Her diet is as strict as mine, altho she doesn\'t have the dairy problem

544 I found that oats was put in a lot of items when it wasx stated
gluen free - oats is good or oats - but leave it out of gluten free
items.

546 when else would it be used?

550 I AM ALREADY NOTICING \"NO GLUTEN\" ON MORE ITEMS IN THE GROCERY
STORE.

552 It should also refer to cross contamination!

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 9 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

560 when diagnosed my doctor told me of CSA. You have been a wonderful
helper. Thank you-

563 And should be free from cross-contamination

566 I thought all products marked \"gluten free\" WERE really G-F!

573 All products should reveal this info.

575 agree STRONGLY. Gluten-free should only be used for COMPLETE
gluten-free.

581 WHY WOULD YOU QUESTION THE TIME HONORED DESIGNATION?

587 Don\'t know enough to wnswer. Research not there yet!

595 \"Modified food starch\" should specify whick kinds

597 I do eat puffed rice - and Crunch \'Ems who are made in places where
other cereals are made.

598 There may be other substances that are not gluten free in the
product.

600 After diagnosis, I saw a dietician who looked IN HER \"BOOK\" to see
what I could or could not eat. At a McDONALDS, the counter girl\'s Mom
had

Celiac, whe sent me pages of recipes, & help. I contacted women in So.
Calif. & learned bout \"Celiacs Helping Celiac & the CSA. Thanks! Now

my granddaughter is a Celiac.

602 Is O.K. to use term \"gluten free\" untill research shows that
something else causes the same symptoms, e.g. \"gliadin\". Then perhaps
the

definition should be altered to remain comsumer friendlly or meaningful.

603 I don\'t think there should be any variance.

605 We need more help to identify these gluten in food

606 Have never intentially challenged myself, inadvertant mistakes,
regardless of the intensity of the reaction. Keeps my true to my diet.

608 Not much chance with the Canadian & Europeans are allowing small
amounts of gluten.

609 AND UNKNOWN BY PRODUCTS SUCH AS VINEGAR

610 Also, more details on preservatives used.

614 I look forward to the day when all \"starches\" will be identified
on labels.

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 10 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

617 Corn would be nice also

620 GLUTEN FREE AND STILL HAVE GI PROBLEMS

629 should be on all products if possible

630 ALSO PRODUCED IN GLUTEN-FREE FACTORY

631 I do not find companies always willing to give gluten-free info.

633 \"Gluten-free\" and \"Wheat-free\" need to be clarified -
\"Wheat-free\" is not always \"gluten-free\"

637 I\'m enjoying & using the new updated \"new Look\" to the Lifeline.

640 Distilled products even from the sources above are gluten free.

654 I tend to use only products containinig less than four or five
ingredients listed on label.

655 I don\'t consider oats to have gluten - Canadian & European Celiac
groups do not include oats as a gluten carrier.

657 I would like to see gluten free on all food items

658 Every product should indicate whether it is or isn\'t

659 questionable

660 I\'ve just recently discovered I can eat oatmeal

666 ingredient should be listed individually

673 I\'ve been on the GF diet 15 mos. & do not feel better.

682 if I ingest wheat by misinformation in restaurant I have an
immediate response which result in diarhea for several days.

694 BETTER FOOD LABELING WILL BE VERY HELPFUL

695 I react to oats to a great degree (same reaction as gluten)

696 I like the fact that they mention it on vitamins and other
medicines. Also on many other foods.

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 11 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

699 I am more concerned about the specification of types of \"modified
food starch\" and/or \"vinegar\"

700 Add: spelt and quinoa to the list

704 This would be a great help.

709 no cross-contamination during preparation or processing.

711 STRONGLY AGREE

715 ?

720 \"0\" GLUTEN IS PROBABLY NOT POSSIBLE & INSISTANCE ON SAME MAY
BACKFIRE & LIMIT FOOD PRODUCTS AVAILABLE

722 You need to publicize gluten-free beer - now available. That is far
more important to your members than a lengthy article about the history
of \"teff\"

& the town where it\'s being grown.

724 anything with risk of and contamination from above

726 my understanding is oats may be cross-contamined.

729 it\'s not gluten-free if it has/contains or has been contaminated
with WBRO.

730 Very hard to be sure of most foods.

731 on things that do not contain gluten. Maybe derivatives of these do
no contain gluten?

732 correct

733 I have been \"caught\" too many times.

735 no cross-contamination

736 Strongly agree

737 Deliac Sprue Asso. Should do more extensive risearch so one would
have more food choices.

738 NEED BETTER BREAKDOWN OF ADDITIVES AND PRESERVITAVES

740 I have bee eating oats the last year.

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 12 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

742 It would make it easier to shop

744 should be listed on ALL ingred.

745 Sometimes the ingredients are GF but the product is contaminated
during processing.

746 I ONLY PURCHASE GF ITEMS FROM DEDICATED FACILITIES.

749 ARE OATS OK?

753 WOULD BE HIGHLY HELPFUL

754 WISH ALL PRODUCTS INDICATE GLUTEN FREE OR IF IT CONTAINS THE ABOVE
IT INDICATES THE WORD \"GLUTEN\" IN INGREDIENTS.

757 wish more itens would state Gluten-free

763 Wheat Free & GF are not the same - very confusing to \"newbies\"

764 need better labeling on some products.

774 I look for: wheat free & gluten free products.

778 I\'m negotiable on the Oat part, depending on where they are grown &
how they are transported/harvested/processed. Overall I agree, but I do
eat

Irish oats.

781 ALL products, especially food items should say gluten free on
packaging if it is glluten free

783 That\'s what I\'ve been told, is there a more thorough definition??

784 I once ate wheat-free Paul Newman Cookies; I later found out they
were not gluten-free

786 All ingredients should be on labels especially with GF

788 I believe there are others that have not been identified

790 \"Zero tolerance\"

792 The only exception might be oats.

804 Please come up with a consences of Coex standard soon!

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 13 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

805 Have learned I am ACUTELY sensitive - including to buckwheat
(cross-contamination???)

806 The risk is too great to tolerate ANY level.

807 Years of Celiac undiagnosed left me in life & death battle everyday
for the rest of my life!

808 It has only been 2 months and I am already tired of reading and
\"guessing\" what the ingredients mean!

810 The CSA should only be concerned with telling us what contains
gluten - not with warning us that some people may react to this or
that - which

may be an allergy and have nothing to do with gluten intlerance!

812 I would like more products to lict - \"gluten free\"on \"contains
gluten.\"

815 \"low-gluten\" is subjective & may be harmful to many celiacs. If a
low-gluten threshold is established scientifically to be safe, then the
definition

could be braidened.

817 All my life I\'ve had periods of stomach \"distress\" but never
though it was caused by foods I ate!

832 \"TAKE NO CHANCES\"

834 This is very important to me!

837 I like the additional statement (if true) to be added, SEPARATE.
MADE/NOT MADE in a gluten free environment.

838 I EAT McCANN\'S OATMEAL ON OCCASION - NEVER QUAKER OATS

842 Just as the disease itself - you either have it or you don\'t. the
same is true of food product. Yes it has gluten or NO in between

844 also accepted levels should be 0 parts per million of gluten NOT 20
parts per million as is acceptable now. Oats are 15 ppm and cause
problems

so 20 ppm seems to be to high for gluten free.

847 Oats is questionable

850 shopping for food & grooming products could be a lot easier if
everything was labeled

855 Finding \"Gluten-Free on labes is extemely helpful.

856 GF should not be used on products that have been cross-sontaminated.

858 I stay in healthy condition - NO cheating on diet VERY little
alconol - & water aerobics & vitamins!

859 All products should belabeled as to whether they contain or have
come in contact with a gluten source.

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 14 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

860 I am starting to see more information on product packaging

871 Amy\'s Organic Foods state gluten free then in smaller print \"the
product is manufactured in a facility that products foods containing
wheat, milk.\"

how con they say it\'s Gluten Free?

873 I can\'t wait until its on packaging!

879 You are missing other items.

888 \"wheat free\" - gluten free is better

894 What do you mean by derivatives. Derivatives that are GF (tested?)
or none at all. Do you mean actual derivatives or those with ingredients
that

may or may not be derived.

904 Absolutely, no gluten - ever!

905 I think I\'m sensitive to more preservatives and foods which though
gluten free cause gas -

910 I was treated for painful osteoarthritis for 8 yrs. Have had no pain
and take no medication (except occasional aspirin) since diagnosis

914 no cross-contamination is sometimes difficult to ascertain

915 \"Modified Food Starch\" is not helpful!!!

917 Same as no. 12 - Only products that do not contain any wheat,
barley, rye, oats or any of their derivatives.

924 Would like to see soy included and sulphites, MSG

930 limit to wheat, rye, barley & derivatives

931 I STRONGLY AGREE

933 \'GLUTEN-FREE\' ON LABEL MAKES ONE

FEEL SAFE\' BUT SOMETIMES THERE COULD BE \'CATAMINATION\'

934 It would help me to sort out food products but I always read labels
anyway.

938 Please help get this thru!!!

940 NO WBRO IN ANY FORM

941 I think if a derivative\'s chemical composition has changed so as
not to produce an immune response, then it is not gluten

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 15 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

943 spelt also contains gluten

947 Since I was in grade school eating oatmeal made me sick. I think
some prople a very sensitive to any treace of gluiten. I know many who
can eat

oats but I don\'t dare. Maybe some people develop more antigens. A
product containing oats to me means gluten.

951 I don\'t believe Oats should be included in the above definition.

952 I only use gluten AND wheat free - has to say both

960 How grateful I am for the CSA\'s continuing fight for food labeling.

967 Yes -

969 or made where any of those ingredients are used in processing plant

971 with exception of Oats

973 Hospitals - Hotel should have staff informed of Gluten diets.
Recently hospilatized but staff did not understand. I had to explain
EACH meal.

975 Love your materials - has helped me understand wht Celiac Disease is
-

977 Also should specify processed, whether or not, in a plant that is
gluten-free!

978 since oats is questionable I\'d revixw the statement to exclude oats

979 (This maybe too simple - Perhaps there is a minimum amount allowable
that would cause no harm?

982 Sometimes they say Gluten free but have malt or some other gluten
ingredients

983 I also have GI reaction to gluten so I never cheat on my GF diet!

984 Question 9 eating out is always a problem

992 BUT \-\-- distilled vinegar doesn\'t seem to cause any problems for
me

994 It should be on all products

995 Soesn\'t if apply only of those produsts NOW?

996 I miss pickles & wish they would put GF info on those products. Are
there any that I can eat?

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 16 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

997 Need Lactose info also. Reactions extreme.

1001 I am under the impression that oats may be okay if they are not
contaminated. Maybe I am wrong.

1014 It should be used whenever truthfully can be applied to a product.

1016 a small amount can be hard to ditect until it has caused a bigger
problems

1021 Should be as important as the labels about peanuts. In it\'s own
way; we get almost as sick as they and it always takes at least 3 days
if you eat

something wrong because of it being mislabeled.

1025 I have varified that all my medication are gluten free.

1028 I have several Diets - \"Gluten - Free\" \"Diabetic\" \"Low Salt\"
& \"Low Cholesterol\"

1032 Gluten Free should be on all products - with the rest of their
ingredients - so we can see what we are eating.

1036 I had my annual celiac physical 4-26-05. All is well! My tests
indicate excellent health and adherence to the GF diet.

1037 TIMES 3!!!

1038 More companies now indicate \"gluten free\". Pres. Bush signed a
bill that within a year \"Gluten-Free\" must be indicatied on food
labels.

1039 true, unless there are more that needs to be known

1050 I\'m so grateful for all the work that went on years before my
dianosis that has made it so much easier for me. I\'m SO much BETTER!
100%

improvement

1051 I it has gluten in it, then it should state Gluten in the Allergen
statement.

1054 works for me -

1056 yes, people buy me food b/c it says wheat free, but still has
barley, etc.

1058 didn\'t know that could be anything but

1064 I would include oats only because it so often is contaminated with
other grains.

1067 Gluten free also means also produced in a gluten free environment

1071 It\'s so helpful to buy something (who cares of the price) that
gives you peace of mind b/c it says \"Gluten Free\"

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 17 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

1073 Agree Big Time - Please make this happen

1080 Just \"wheat-free\" is deceptine labeling.

1083 ingredients are in too small print

1085 No gluten and no cross contamination by gluten.

1087 What about cross contamination.

1089 I sometimes see wheat free then realize it has oats, etc.

1091 If gliddian is a derivatove - agree, if gliddian is a similar -
look alike protein, needs to be listed too.

1093 It should be on all foods, keeps the company honest of the product
they are producing

1094 I have never broken my diet - knowlingly

1096 I question \"oats\" being included

1097 Diet Difficult being of Italian descent.

1098 AGREE - YES!

1105 there are too many questionable ingredients

1107 No contamination of

1111 It would be nice not to have to check all ingredients

1116 If it is not gluten-free, I will know in 4 hours

1118 SO helpful when shopping

1119 I have not tried eating oats yet but am planning on it in the
future.

1120 NEVER GIVE UP!

1125 That is all that I know. If there is something else I would want it
included.

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 18 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

1126 I\'VE BEEN HOSPITALIZED MANY TIMES OVER THE YEAR. I CALLED (PHONED)
CSA SEVERAL YRS. AGO, GOT NO RESPONSE.

1127 Labels should be clearer

1128 I believe it would be easier if all products were marked, however
this would probably be impossible to do.

1134 oats might nave a liile different warning. I don\'t use often - but
seem to have no problem.

1137 improvement on Labels of regular foods

1140 Tested product should be as low as possible but certainly no more
than 10 PPM of gliaden & lowere possible like Kinnicsinit or a dedicated
plant.

1150 This should include trace amounts.

1151 oats should not be included

1154 Would appreciate support groups!

1157 would like to see \"gluten-free\" on all products or some kind of
insignia that identifies products that are gluten-free

1158 something that is wheat -free is not necessarily G-F.

1163 we need to know if words like spices, flavorings, nodified food
starch, carmel coloring etc. are gluten free!

1165 it should be on all labers - Gluten or not.

1171 Need more info on cereals

1173 and are prepared in GF facilities

1174 TOO LIMITED MAY INCLUDE GLUTEN

1181 Accurate food labeling & careful knowledgable food preparation is
VERY important to those of us with CD

1183 when in doubt, DON\'T!

1185 assayed oats should be exempted

1192 CODEX ALIMENTAIUS IS A GUIDE I ACCEPT, BUT WILL READ LABELS ON GF
ITEMS & DECIDE FOR MYSELF.

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 19 of 20**

**1, 2005 -10,933 copies sent out**

**Number** **12 b - Comments**

1200 because of other sensitivities I would need to be able to identify
the other added ingrediants.

Living my life \"gluten-free\" enables me to have my life to live.

**Tuesday, June 14, 2005** **Celiac Sprue Association Membership Survey
2005 from Lifeline, Vol. XXV, No. ** **Page 20 of 20**

**1, 2005 -10,933 copies sent out**