HELP!!! Newly Diagnosed Celiac Disease

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Mcat62

Joined: Aug 11
Posts: 58

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Posted: 17 Dec 2011, 07:12
Sad
Well, we finally know why my 15 year old daughter has lost 10 lbs (unintentionally) & has had nausea for the last 3 months--the GI doctor just called to say that the endoscopy she had last week shows markers for Celiac Disease (ie, gluten intolerance). As you might imagine, this is going to be a HUGE lifestyle change for her, & of course the family, as we will have to be very careful about her diet & the things we make to eat. Can anyone recommend any good books/websites/stores to buy gluten free products- (we live in Central NJ)?
I'm sick about this, but trying hard not to show it for her sake.
Thanks for any help you can offer
NCNOLE

Joined: Feb 11
Posts: 1,218

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Posted: 17 Dec 2011, 07:40
I would ask for a referral to a dietitian. That way you can go over the diet in detail. Gluten is hidden in so many foods and condiments. Things like soy sauce, mayonnaise, gravy... There are many "normal" products that you can find these days - rice chex, box brownie, cake, cookie mix - labeled as gluten free.
You can probably find some breads in the grocery store in the healthy eating section, but they might not taste too good. She might just get used to not eating bread, or buying by trial and error.

There is a company called "better batter" and they have a website. They sell flour that can be used in baking. They also have recipes.

Here are a few more links that can help you out. Good luck and try not to stress out too much about it. One step at a time. She will learn gradually and when she eats a food with gluten she will soon know the signs. Dining out is the most difficult part, she will need to order plain foods. Hope the links below help.

http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/dennisarticleapril.pdf

http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/PaganoArticle.pdf

http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/copy_of_CuretonArticle.pdf

http://www.rd411.com/index.php?option=com_content&view=article&id=1706:gluten-free-diet-facts&catid=89:allergies,-intolerances-and-special-diets&Itemid=383

http://www.rd411.com/index.php?option=com_content&view=article&id=1642:celiac-resources&catid=89:allergies,-intolerances-and-special-diets&Itemid=383
Mcat62

Joined: Aug 11
Posts: 58

      quote  
Posted: 17 Dec 2011, 08:40
Thanks--we do have a referral to s/w a dietician, but can't call til Monday to make an appointment(just got the news late yesterday), & I want to go in as prepared as I can. I'm also trying to freak out in private so I can be strong for her & in public, but I'm emotional, so it's tough.
NCNOLE

Joined: Feb 11
Posts: 1,218

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Posted: 17 Dec 2011, 10:34
She'll be fine - it sucks and will be difficult at first. But she can manage - it's not like she will stop breathing if she eats the wrong thing Smile It is manageable. At least she doesn't have diabetes - or something that progressively gets worse or has more long term complications.

I would start by looking at what she eats on a regular basis and would probably avoid dining out until she feels more comfortable with her food choices. Keep a food diary and then google her favorite foods to see if they contain gluten.

She may have difficulty getting into a dietitian since it is so close to the holidays, but you should be able to manage for a little while.

Good luck!! She will be fine!!
Mcat62

Joined: Aug 11
Posts: 58

      quote  
Posted: 18 Dec 2011, 12:50
We've actually been told not to go hard core gluten free until she has more bloodwork done, which will be after we see the dietician, & we may allow her thru the Christmas season to have her favorite cookies, meals, etc & then go completely gluten free after that. Thanks for the websites, we're going to go thru them together
Losin25

Joined: Apr 11
Posts: 367

      quote  
Posted: 18 Dec 2011, 17:17
Start here:
http://celiac.org/

I've been gluten free for about 3 years. It's not bad and I feel so healthy now. I know it's harder for teenagers because of the social/peer pressure to be normal. My son should be gluten free, but the second he leaves the house it's outside of my control.
============================================
155: After regaining 16 pounds. It's my goal again.
155: Goal Weight | March 17, 2012!!!! I did it!
Size 8: levi's jeans | February 3, 2012 (Actually, I'm a size 6. I skipped Cool
168: BMI 24.8 no longer overweight | December 1, 2011
174: Vegas vacation | September 15, 2011 (two weeks early)
180: first 27 pounds gone | August 25, 2011
186: 10% body weight lost | July 14, 2011
199: 200's gone forever | May 12, 2011
207: Starting Weight | April 28, 2011
krystynecar

Joined: Oct 10
Posts: 153

      quote  
Posted: 30 Dec 2011, 20:05
eating at home is a breeze but eating out can be extremely challenging - I always have a stash of safe food with me just in case. Honestly many of the "gluten" free products are terrible - very expensive, full of chemicals and loaded with carbs and calories - eating real unprocessed food has been all that works for me. focus on fruit, veggies, and protein! Many celiacs later become lactose and glucose intolerant. There can also be an issue with alcohol as our bodies do not produce enough of the enzyme required to break down alcohol so intoxication can happen with very little alcohol - I found out the hard way!! Sometimes I think that it has been a blessing in disguise! The biggest thing your daughter needs to know is that not sticking to a totally gluten free diet will lead to major problems in both conceiving and carrying a pregnancy.
don't let your struggle become your identity!
hobo1219

Joined: Aug 11
Posts: 39

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Posted: 30 Dec 2011, 20:14
A lady I work with has a husband and son that have to eat glutton free as well. I am always browsing recipe websites and print for her any recipe I find that is glutton free. The Pillsbury and Bisquick websites have wonderful recipes and lots of glutton free ones that will make her feel she is eating like every one else, but still eating right. Some of the recipes include pizza, chocolate pie, chicken strips.... Not hard or complicated to make either. My co-worker uses the gluten-free Bisquick a lot to make things like bread, pie crust, pizza crust...

I do sympathize, my son can eat wheat, but can't have any corn products such as corn starch, corn flour, and corn syrup.... Boy is it hard to find lunch items that a 5 year old can enjoy that doesn't have any corn syrup without making everything including fruit snacks from scratch. Thankfully no corn syrup and no gluten are becoming more popular with store-bought items.
Mcat62

Joined: Aug 11
Posts: 58

      quote  
Posted: 31 Dec 2011, 10:07
Thank you to all who have replied. Our biggest challenge right now is going to be school lunches--the gluten free breads seem to need to be toasted to taste good, & if you toast bread in the morning, obviously by lunchtime it's hard. I found a rice wrap she liked, a gluten free mix that makes rolls, & some gluten free crackers, so we're going to start there. To start, I think I'm just going to cook as gluten free as possible, which is tough b/c a lot of my go-to quick recipes require some form of a processed product that has wheat starch in it, but we will do it!!Luckily, I also have a supportive family (immediate & extended) that wants to help as well. I will look @ the pillsbury & bisquick sites, just need to find out where to find more items.
mikefarinha

Joined: Jun 11
Posts: 443

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Posted: 31 Dec 2011, 10:35
I'd look into the GAPS Diet and The Primal Blueprint. My personal suggestion would be to forgo manufactured gluten free products and eat food that naturally has no gluten. If you want to bake use coconut flour.

www.wellnessmama.com for some recipies.

-Mike
"Eat as if your life depends on it!"
Losin25

Joined: Apr 11
Posts: 367

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Posted: 31 Dec 2011, 16:09
For school lunches, you might want to try these fun meals called "GoPicnic" you can buy them on Amazon.com in bulk. They have many gluten free meals. They are kinda like pre-packaged foods that they server on airlines (in fact the first one I ever had was on an airline). Great flavors and some serious variety. Also, they come in a fun package with a Sudoku puzzle inside.

http://www.gopicnic.com/Special-Diets/Gluten-Free

I always keep some in the car for emergencies. They run from 400-500 calories each.
============================================
155: After regaining 16 pounds. It's my goal again.
155: Goal Weight | March 17, 2012!!!! I did it!
Size 8: levi's jeans | February 3, 2012 (Actually, I'm a size 6. I skipped Cool
168: BMI 24.8 no longer overweight | December 1, 2011
174: Vegas vacation | September 15, 2011 (two weeks early)
180: first 27 pounds gone | August 25, 2011
186: 10% body weight lost | July 14, 2011
199: 200's gone forever | May 12, 2011
207: Starting Weight | April 28, 2011
Mcat62

Joined: Aug 11
Posts: 58

      quote  
Posted: 01 Jan 2012, 09:38
Thank you, Losin25!! Not something I would want to have to use every day, but certainly good for emergencies/travel/keep in her locker @ school for when she forgets her lunch & can't buy anything in the cafeteria.
hawest

Joined: Oct 10
Posts: 5

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Posted: 02 Jan 2012, 10:45
For a treat, I recommend Nigella Lawson's Clementine Cake which is gluten free and dairy free. I've added the recipe here and am waiting for sharing approval, but you can Google it. The main ingredients are clementines, almonds and eggs.
krystynecar

Joined: Oct 10
Posts: 153

      quote  
Posted: 14 Aug 2012, 09:38
My little guy has wheat intolerance too! For his lunches we usually give him leftovers from the night before in a little thermos (he is 5!) He also loves brown beans, soup with rice crackers, meat roll ups (meat, cheese, lettuce rolled up) he always takes a container of fruit and one of veggies. Lately he has started asking for baked potatoes - we went on a road trip and Wendy's serves a baked potato with broccoli and cheese - he will get that with a 1/2 order of chilli - he loves it!
don't let your struggle become your identity!
Stella1964

Joined: Sep 10
Posts: 56

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Posted: 18 Aug 2012, 17:51
Honestly, read up on Primal Blueprint, Paleo lifestyles and the book Wheat Belly!!!
saeriva

Joined: Mar 12
Posts: 7

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Posted: 30 Aug 2012, 17:56
If you're looking for a great cookbook that with no gluten, it's hard to do better than "Cooking for Isaiah" by Silvana Nordone. It's got everything from pancakes to crab cakes. I spent four years as a live-in nanny for two boys with celiac (and who were also allergic to milk and soy) and they couldn't get enough of the muffins I'd make from the recipes in this book! It's probably the best gluten-free cookbook I've ever used.

As for good-tasting, gluten-free bread it really is best to invest in a bread machine and make your own. It sounds intimidating, but it's actually very simple and completely worth it for the taste. "Gluten-Free Baking for the Bread Machine" by Annalise Roberts is a great resource for fabulous, easy bread.
eKatherine

Joined: Aug 12
Posts: 1,286

      quote  
Posted: 02 Sep 2012, 10:38
Mcat62 wrote:
We've actually been told not to go hard core gluten free until she has more bloodwork done, which will be after we see the dietician, & we may allow her thru the Christmas season to have her favorite cookies, meals, etc & then go completely gluten free after that. Thanks for the websites, we're going to go thru them together


Any positive indication of celiac or gluten intolerance should be taken as an absolute indicator that the patient should never eat gluten again. Most of the tests have lots of false negatives. Positives are never false.

I have been gluten-free for many years.
luncheonista

Joined: Sep 12
Posts: 1

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Posted: 02 Sep 2012, 21:24
I've been gluten free for a year and the specific brands that I recommend are Schars- they make excellent rolls and breads and pizza crust and Ancient Harvest or Sam Mills for pasta. Rice pasta is awful. Pamela's for an all purpose flour blend.
eKatherine

Joined: Aug 12
Posts: 1,286

      quote  
Posted: 06 Sep 2012, 19:24
Udi's bread is fantastic. I don't eat many commercial gluten-free products, especially not now that I'm on very low grains.



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