Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newbie Need Help!


Dfrankjazz1

Recommended Posts

Dfrankjazz1 Newbie

Hi folks, I've just been diagnosed with celiac from the anti-body blood test (came to 53) and they found a sprue-pattern in my small intenstine. I understand that I have to stay away from obvios gluten, wheat, rye, barley. How scrupulous do I have to get about this? Do I have to worry on a daily basis about barley malt in anything, cross-contamination in ordeing fried foods, frozen yourt (a favorite), mustard, ketchup, soysauce, etc.? I'm getting diffetent info from different sources. Is there a day-to-day bottom line to managing celiac?

Also, I've been told that I need to be religious about the gluten-free diet as celiac folks who don't religiously follow the gluten-free diet are at risk for cancer. Does this mean that if I knowingly or unknowingly ingest a small amount of gluten occasionally that it could be a real problem?

I'm a jazz musician and travel alot, work on the road and eat in restaurants alot, etc. Can I keep this lifestyle? How about oats? Ther's so much conflicting info out there, it's hard to digest it all:)

Thanks for your time and help!

Dave F


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

Don't have much time, but have a little to say: first, oats are debatable. Second, you do have to be religious about it...a finger nail of gluten or contamination will throw your intestines off. You have to keep the lifestyle: otherwise you'll get cancer or osteoporosis....you've got to. Here are some foods that I have pasted from Microsoft Word where I keep a list: it should help:

- Store-bought Cookies: try Pamela's Products -- the BEST cookies. The lemon shortbread are decent, but some people find them too strong a lemony taste. However, try the Dark Chocolate Chocolate Chunk Cookies. They are AMAZING!!! Even including regular cookies, they are the best store-bought I've ever had.

- Homemade Cookies: if you have 15 minutes to spare, make peanut butter cookies. Very good...even my aunt who hates PB liked them. Preparation time is about five minutes and the recipe calls for 10 min. baking -- it might take 15. All you need is 2 cups of PB (Skippy or Jif), 2 cups of sugar, and 1 egg (this is also good because there aren't any weird gluten-free flours and stuff...where do you buy those things, anyway? I don't like to cook, and I surely don't like to cook something that requires six different types of flour...it's ridiculous and I like simplicity if I am even going to bother cooking something...I don't mind making basic things, but now 6-flour-cookies that take three hours to make and three minutes to eat... ).

- Fruits/Vegetables/Meat: I eat so much more fruit now...apples, bannanas, strawberries, blueberries, canned mandarine oranges, canned peaches, etc. There are, of course, meats: chicken, steak, pork, hamburgers, etc....no fresh meat is excluded...but I often forget about fish, which are, too, gluten-free.

- Bread: People will say Knikinick or however it's spelled is great, but I've found Ener-G to be a bread that tastes astoundingly similar to regular gluten-filled white bread...that's what I use...you make your pick...go with me or the majority!

- Pizza: probably thought you'd never have that again, right? Get Chebe (you can only get it online), but buy the bread mix, not the pizza crust (the bread mix turns out better). Follow the instructions, mush it out into a round "thing", bake as instructed, and then add sauce (Classico is good and the only kind that I know to be gluten-free....but expensive), and gluten-free cheese. It's terriffic. By the way, you can get the Chebe at Open Original Shared Link. Try it...the shipping is free and once you realize that you like it, you can buy it in bulk and get discounts. Please!!!! If you take ANY OF MY ADVICE FROM THIS POST....TRY THE CHEBE!!!

- Miscellaneous: Raisins, Quaker Rice Cakes, most soft drinks are gluten-free including all kinds (diet, caffeine free, etc.) of Coke, Sprite, Sunkist, Pepsi, etc. As long as you stick with the brand-name companies (not the Supermarket Colas and be careful with Root Beers). There are many gluten-free candies...I actually made a post under the "Teenagers Only Section" for gluten-free candies...check there for the complete list that Gf4Life provided...actually, I'll copy it below:

Hi celiac3270,

I have a list of mainstream gluten-free and milk free candies that I use when shopping for candy for my kids. I got it from the Gluten-free Casein-free Diet Support Group for Autistic kids and they are very strick when it comes to putting products in their booklet each year. I know that Dextrin is one of their ingredients that is avoided, so these should be safe. Still read all the labels, since manufacturers change their formulas far too often:

Nestle: Sweet Tarts, Spree Chewy Candy, Regular Spree Candy

Farley gummy bears

Willy Wonka: Gobstoppers, Bottle Caps, Pixy Stix, Nerds, Runts

Mike & Ike: Zours, Jelly Beans, Hot Tamales

Starburst Fruit Chews (NOT Starburst fruit twists!)

Necco: Necco Wafers, Sweethearts, Conversation hearts (Valentines), Necco Candy Eggs (Easter), Candy Stix, Talking Pumpkins (Halloween), Peach Blossoms (Christmas), Necco Ultramints, Canada Mint & Wintergreen Losenges

Rock Candy (made from pure sugar)

Ce De Candies: Kidz Rings, Candy Fruits, Candy Lipsticks, Smarties

Mars Inc: Skittles, Jelly Beans

Sunkist: Fruit Jems, Jelly Beans, Orange and Cream chews, Super Sour Stars

Sorbee International: Lollypops

Jolly Rancher: Hard Candies, Jelly Beans

Jelly Belly: All flavors of Jelly Beans EXCEPT: Cafe Latte, Buttered Toast, Caramel Corn, Buttered Popcorn, Chocolate Cherry Cake, Chocolate Pudding, Strawberry Cheesecake

This should give you a lot more options and they are all available pretty much everywhere. I can also put together a list of others that you might only find online or in healthfood stores if you would like. Just let me know.

As for chocolate, I found that the Scharfen Berger chocolate bars are very yummy. They are gluten and dairy free by ingredients. The small bars are wrapped in a different facility where they also wrap other chocolates that do contain milk, so as a precaution they put a milk warning on the label. I am very sensitive to dairy reactions and have never had a reaction to these bars. They are a bit pricey and not available everywhere (I got mine at Whole Foods) but they are very nice to have when you are craving chocolate. There are also a few kinds of baking chocolate chips that are gluten and dairy free.

God bless,

Mariann 

Chips: most things by Frito Lays (not Doritos), you can have: Lays Potato Chips, Wavy Lays Potato Chips, Cheetos, Fritos, etc. You can get a complete list at Open Original Shared Link

FritoLays Gluten-Free Products:

Last updated August 28, 2003

BAKED DORITOS

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748

    Jadelucia
    Newest Member
    Jadelucia
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.