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List For The Newly Diagnosed


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#1 TCA

 
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Posted 18 June 2006 - 11:26 AM

I've seen a lot of posts lately asking how to get started. Why don't we make a thread of things to do to get started post diagnosis? That way we can direct new people to this thread to see the great ideas. All you old pros, add your info in. I'm still relatively new to this (9 mos.), but these are some tips that would have helped me:

1. Take a breath!!! You're not going to be able to do this overnight, but it will all come together. We're all here to help, so try not to panic!!!

2. Buy some gluten free treats that make you feel like you can eat!!! I highly recommend Enjoy LIfe snickerdoodles, Chebe breads and pizza crust, Cause you're Special (glutenfreegourmet.com) and Pamela's brands (on sale now at amazon .com), and Tinkyada pasta. If you don't have a good health food store near you, glutenfreemall.com is a good place to start and order from.

3. Go through your pantry and call the 1-800 #s on the backs of the package to see if they're gluten-free. Ask the manufacturers for gluten-free food lists. Most are great about this and will also send you coupons. The web also will have some companies' lists. This takes some time, but it helps you identify what you're already using that could be gluten-free.

4. Do the same with your med cabinet. Call about any drugs you take. This is sometimes harder to get info on, especially with generics. Vitamins, pain killers, cold meds, topical meds, everything has to be checked.

5. Move on to your health and beauty supplies next. This may not seem like a big priority, but it really is. Especially anything that goes on your hands. My daughter was VERY sick over some curel lotion we were using, then touching her bottles, etc. Unilever, lubriderm, and suave are some good companies for listing gluten ingredients, so that might be good to start with.

6. You don't have to throw out all your pans, but do be careful. I didn't realize this was an issue for months and months and got glutened several times. I wouldn't use cast iron, wooden spoons, colanders and scratched teflon pans. Other things will probably be ok if you wash them good and use the dishwasher!!!! Some people have used the self clean option on their oven to clean their cast iron.

7. Remember that a lot of pet foods have gluten. Wash your hands thoroughly after feeding animals. Be careful about the animals (dogs especially) licking you or the kids in the mouth or hands.

8. Be aware of Cross Contamination:
*Be careful for to have separate containers of Peanut Butter, jelly, butter, mayo, etc. Bread crumbs in common containers will cause a reaction. Squeezable condiments are great. We keep mayo, mustard, ketchup, and jelly this way.
*Make sure you thoroughly wash your hands between handling gluten and gluten free foods. Purell WILL NOT remove gluten, things have to be washed with gluten-free soap and water.
*Do not cook gluten-free food in a toaster that is used for gluten products.
*Glues often have gluten in them, so avoid using the paper towels with glue on them and be careful when playing with arts and crafts, washing hands thoroughly afterwards. No licking envelopes, stamps, etc. No playing with the paper towel roll.
*DO NOT fry things in oil that has been used for things with gluten in them. Major source of contamination.

9. Stick with brands you know are safe:
These companies do not hide gluten and always list Wheat, Oats, Rye, or Barley if they use them:
Aunt Nelly's
Balance Oasis (Balance Bars)
Baskin Robbins
Ben & Jerry
Betty Crocker
Blue Bunny
Breyers
Campbell’s
Cascadian Farms
Celestial Seasonings
ConAgra
Country Crock
Edy's
General Mills
Good Humor
Green Giant
Haagen Daz
Hellman's
Hershey
Hillshire Farms
Hormel
Hungry Jack
Jiffy
Klodike
Knorr
Kozy Shack
Kraft
Libby's
Lipton
Martha White
McCormick
Marzetti
Master Foods
Muir Glen
Nabisco
Nestle
Old El Paso
Ortega
Pillsbury
Popsicle
Post
Progresso
Russell Stover
Sara Lee and their subsidiaries (Kahn's, Ball Park, Jimmy Dean, etc...)
Seneca Foods
Smucker
Stokely's
Sunny Delight
T marzetti
Tone’s
Tyson
Unilever
Wishbone
Yoplait
Zaterain's
  • 1
If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.
Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)
Husband - Type 1 diabetic, Negative bloodwork
Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06
Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05
"All things happen for good for those who love God..." Romans 8:28

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#2 Fiddle-Faddle

 
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Posted 18 June 2006 - 04:30 PM

And envelopes--DON'T LICK THE ENVELOPES!!!

(Great thread, T--I am SO impressed you are taking the time to do this when you have so much on your plate already!)
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#3 aspenkeep

 
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Posted 18 June 2006 - 07:49 PM

Thank you TCA. And you did move #6 to first place :D
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#4 dionnek

 
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Posted 19 June 2006 - 04:50 AM

Yes, I think reitterating number 1 is important - I am one of those people who has to have things done her way and done NOW, but I've come to realize after (trying to) be gluten-free for a month now, with no improvement, that this is a very slow learning process. I jsut now realized I've been using lipstick with wheat in it every day, not realizing I was poisoning myself more! :P

I have determined that it took me about 5 years to get diagnosed, so it will probably take about half that time for me to really figure out all the sources of gluten in my life :lol:
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#5 Lisa8439

 
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Posted 19 June 2006 - 03:52 PM

WOW thank you for compiling that list of tips! :)

As a newbie just dx last week, this list has helped me think of things I wouldn't think of before. I never thought about envelopes, lotions, and make up! Yeesh!
I am trying to research everything in between running after my spirited 15 month old... it is so helpful to read things like this!
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#6 StrongerToday

 
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Posted 19 June 2006 - 04:36 PM

Contact Nini for her Newbie Survival Kit!
  • 0
Ev in Michigan

GFDF since 8/20/05
Negative Bloodwork ~
Dr. encourages me to trust my
"Gut Reaction"

#7 jacklyn1981

 
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Posted 20 June 2006 - 05:19 PM

does anyone know offhand certain health and beauty products that are gluten free...such as soap, shampoo, makeup and toothpaste?
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#8 jerseyangel

 
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Posted 20 June 2006 - 05:30 PM

does anyone know offhand certain health and beauty products that are gluten free...such as soap, shampoo, makeup and toothpaste?

Hi Jacklyn--welcome in! :)

Off the top of my head, Dove Products will clearly list any gluten ingredients. Several people here use their shampoo and soap. I use ShiKai shampoo and conditioner (their bath products have gluten). Crest and Colgate toothpastes are gluten-free. For makeup, I use Bare Escentuals. A lot of their makeup line (but not all) is gluten-free. Same with Neutrogena. You can go into the Product forum and do a search for Neutrogena and there is a gluten-free list there. Always read the labels and if in doubt, call the company. ;)
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#9 BRUMI1968

 
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Posted 20 June 2006 - 08:09 PM

does anyone know offhand certain health and beauty products that are gluten free...such as soap, shampoo, makeup and toothpaste?


Just got word that SMASHBOX is all gluten free.

Aveda products almost all HAVE GLUTEN, so beware of those.
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#10 schuyler

 
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Posted 21 June 2006 - 03:00 PM

This is a great thread, I just wish it would have been around when I was first diagnosed because it would have helped a lot :D
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Danielle

Diagnosed with Celiac 1/3/06 at age 20

Also dairy free and soy light

Guardian to 3 boys, ages 4, 3, and 2 who are gluten-free, df, corn free, and soy light

#11 2Boys4Me

 
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Posted 22 June 2006 - 08:17 AM

In CANADA all Colgate-Palmolive products are gluten-free.

TCA, may I add something to your list? I think you and I have both done this.

10. Make a Print out for your pantry door (and Gramma's pantry door or whoever might be taking care of your gluten-free child -or you should you need taking care of).

My print-out is in two columns.
Gluten Free? Yes and No. Under the YES are lots of things like fresh fruit/veg, snacks that Ty likes - including brand names and flavours if applicable. Under the NO column is cereal, pancakes, cookies, breaded anything, soup, gravy, etc.
I also have a section in a box that says to check labels on these "friendly" companies that will not "hide" WROB/M. And it also says to beware of Hydrolysed plant protein, natural flavours, etc. if it's not one of the friendly companies. I have this in a word for windows file and have emailed it to a couple of aunts and cousins looking for gluten-free info.

Does that make sense?
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Linda, Mom to Ty (11 years old)
Ty was diagnosed by blood test June 7/05
biopsy Aug 11/05, diagnosis confirmed Aug 18/05
Mom, Dad and big brother Celiac-free.

#12 Guest_nini_*

 
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Posted 22 June 2006 - 08:41 AM

great list!

oh yeah, feel free to contact me for the Newbie survival kit, just e-mail me at nisla@comcast.net and in the subject put "request newbie survival kit" I will send it to you asap.

my best tip would be to tell people to relax. there is a learning curve with this and you cannot be expected to learn it all in the first few months. Just do the best you can, stick with minimally processed, naturally gluten free foods at first until you get the hang of things. Don't panic if you don't feel better right away, in many people, the healing process takes a lot longer than your Dr.s will tell you. They will expect you to feel better within 3 months... this just isn't realistic. Minimum of at least 6 months, average of 2 years, and sometimes longer... but each step you take toward healing is a step in the right direction and it does get better!
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#13 TCA

 
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Posted 22 June 2006 - 12:00 PM

Can you tell that my job was in technical training before I started staying home? :P It just hit me last night that I just can't stop!!!! I'm so used to writing manuals and procedures and teaching classes that I don't know when to give it a rest. I hope all the old pros will add more info in. My post was just a start. thanks for those who have.

If anyone wants a list of kid foods, feel free to PM me. I have a list I keep on hand for my son.


Also wanted to remind new folks that you might also have trouble with dairy to begin with and have to eliminate that for a while too.
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If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.
Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)
Husband - Type 1 diabetic, Negative bloodwork
Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06
Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05
"All things happen for good for those who love God..." Romans 8:28

#14 AshleyE

 
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Posted 22 June 2006 - 08:56 PM

Thank you all for your help! This is a wonderful thread. :D
  • 0
Gluten free since 6/1/06

#15 DrMom

 
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Posted 23 June 2006 - 06:27 AM

I am not even a month into this new journey of life. THANK you greatly for the supportive words as I am still in the panic mode. Almost afraid to put anything in my mouth. I love your list!
Thanks for sharing.
Dr.Mom
  • 0
Dx celiac sprue 06-06-06
Prometheus Labs in California, blood work
AGA IgG=negative AGA IgA=negative
TTG IgA=positive EMA IgA=positive
Endoscopy shows moderate to severe villa blunting

severe asthma, COPD
right Bundle Branch Block (heart conduction)
short PR interval (heart)
Arnold Chiari Malformation
Irritable Bowel Syndrome
Fibromyalgia, Myofascial pain syndrome
GERD
Osteoporosis, osteoarthritis
Severe claustrophobia
Gallbladder removed

When someone you love becomes a memory,
that memory becomes a treasure.




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