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Newbie Need Help!


Dfrankjazz1

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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


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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

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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