Newly Diagnosed And Reading Labels

[jaayimee]

Hello. I was just diagnosed with Celiac disease. I've been very sick most of my life and it was a relief to finally find out what was wrong. Talk about sticker shock when buying wheat free gluten free bread. I'm looking into it and am considering learning to make my own. My question about reading labels is if it says gluten free on the label does that mean it is safe to eat? And if so why do some things say gluten free/wheat free? Is there a list somewhere that has everything that I need to look for on a label? There are some words on labels that I have no idea what they are so am looking for a list of everything including those. Came home pretty depressed from shopping for foods I can eat. It was very expensive and I did not get much.

Jamie

[kbtoyssni]

Even if a products says gluten-free, I still read the label. Someone on her reported finding a product labeled gluten-free the other day that had oats in it! So you still have to check.

I think some companies label both gluten-free/wheat-free because there are people who are just allergic to wheat and can eat foods with barely, rye and oats. They maybe just look for a wheat-free label and don't think about gluten-free also being wheat-free.

Here's some lists of safe and not-safe foods: https://www.celiac.com/st_main.html?p_catid...-49107278781.c7

If you want to make your own bread, I'd recommend the recipes in "The Gluten Free Gourmet" cookbook. They're all really good and cheaper than store bought. But be prepared for a few failed bread-making experiments! You can use the failures for breadcrumbs.

The first few shopping trips can be very hard. But it will get much easier. And to reduce sticker shock, I'd try to avoid buying a lot of the gluten-free substitutes. Think about what you used to eat and be creative with replacement foods you can find in a regular grocery store. I often get asked "where do you shop?" when I tell people I have celiac. My reply is always that I shop at the same place they do - the local grocery store. I rarely go anywhere else. If you know your brands, it's not too hard to find mainstream food that's gluten-free. Do some searching on this site for safe brands. NoGluGirl posts a good list so you can search her posts.

[Lisa]

Hello. I was just diagnosed with Celiac disease. I've been very sick most of my life and it was a relief to finally find out what was wrong. Talk about sticker shock when buying wheat free gluten free bread. I'm looking into it and am considering learning to make my own. My question about reading labels is if it says gluten free on the label does that mean it is safe to eat? And if so why do some things say gluten free/wheat free? Is there a list somewhere that has everything that I need to look for on a label? There are some words on labels that I have no idea what they are so am looking for a list of everything including those. Came home pretty depressed from shopping for foods I can eat. It was very expensive and I did not get much.

Jamie

Welcome Jamie,

First, take a deep breath. The beginning is the hardest time. This is a great place for information and support.

There is no need to rush out and buy specific gluten free foods. I did that in the beginning also and six months later, I threw it all out. As close as you are to your transition, you will find that they are not very good right now.

Stick to a "naked diet", as many calls it. Meat, fish, veggies, rice, potatoes and fresh fruit. Limit species until you know what is safe. There are some wonderful recipes on this site which will get you in the right direction.

If a product is labeled Gluten Free, it is free of wheat, rye, malt, barley and sometimes oats. If a product says Wheat Free, you must look for other gluten culprits as barley, malt or rye.

Not to add to your emotional burden, a new toaster is a must. I replaced all my wooden cooking spoons, chopping block and scratched non-stick pans, because gluten can hide everywhere.

Check you cosmetics and especially your lipstick and lip balms. Yes, they put wheat in lipstick

And most of all, read as much as you can from this site. You will find no better Celiac Experts than on this site. You are in a good place.

https://www.celiac.com/st_main.html?p_catid...-36107455581.0d

This will get you started. Perhaps someone can post the listing for the companies who will always list gluten as Kraft does.

Hope this helps.

[krebbecca]

Hello. I was just diagnosed with Celiac disease. I've been very sick most of my life and it was a relief to finally find out what was wrong. Talk about sticker shock when buying wheat free gluten free bread. I'm looking into it and am considering learning to make my own. My question about reading labels is if it says gluten free on the label does that mean it is safe to eat? And if so why do some things say gluten free/wheat free? Is there a list somewhere that has everything that I need to look for on a label? There are some words on labels that I have no idea what they are so am looking for a list of everything including those. Came home pretty depressed from shopping for foods I can eat. It was very expensive and I did not get much.

Jamie

Jamie,

The first couple weeks were the toughest for me. I didn't eat much of anything except fruit and then I had problems controlling my blood sugar. On this site, there are lists of safe and unsafe ingredients.

https://www.celiac.com/st_main.html?p_catid...-43107361981.b3

Take this list, go through your pantry and fridge and start collecting things to take to the local food pantry! I found it best to start with a completely gluten-free kitchen and restock from there. At first, stick to making meat, veggies, fruit, potatoes, rice, etc... I take leftovers from dinner to work so I can avoid the typical sandwich lunch. Baby carrots and celery sticks will be your best firends if you are used to having snacks. I didn't believe everyone on this post when they said they didn't eat bread anymore (not even the gluten-free kind) but the longer I'm on the diet the less I eat the 'special' gluten-free versions of things. It's much easier to stick with stuff that is naturally gluten-free - makes reading labels a lot easier! It's healthier too.

Other than that, I read Eating Gluten-Free for Dummies and thought it was wonderful! Read all the articles on this and other sites, and get a book or two to help.

Slowly start trying different bread/cookie/muffin mixes, pastas, cereals, etc. I try only 1 new thing a week so I don't get too overwhelmed. Oh, and expect most of the gluten-free versions to taste worse than the originals. All the more reason to stick with the basics - fresh meat, fruit and veggies.

Hope this helps. Good luck! I've lost 25 lbs and am eating healthier than anyone I know. It's the perfect time to start that "healthy diet" that everyone vows but never does. It's very overwhelming but take one step at a time and don't expect to be completely gluten-free for a while - you'll mess up at the beginning but you'll learn.

Rebbecca

[Ridgewalker]

Some mainstream gluten-free foods I buy a lot:

* Cereal: Cocoa Pebbles, Fruity Pebbles, Berry Pebbles, Trix, Dora the Explorer Cinnamon Stars

* Potato Chips: Utz brand, or Lays Stax

* Classico Spaghetti Sauces, Hunt's Dices Tomatoes

* Hillshire Farms polish sausage

* Oscar Meyer weiners

* white rice (any brand)

* corn tortillas (double check the ingredients on these, but so far, the brands I've bought have all been safe.)

* Broth, chicken or beef: I get HerbOx, Kitchen Basics, or make my own

* All fresh veggies, PLAIN canned veggies, and PLAIN frozen veggies

* PLAIN fresh meat is safe, but if it's packaged with seasoning, you have to check the ingred. Some people have had trouble with frozen meat, like chicken or turkey, because of injected broths.

* Ketchup- Heinz is safe, also Wal-mart brand.

* French's Mustard

* Worcestershire Sauce- I get Lea & Perrin's

* Soy Sauce- Wal-mart brand

* Peanut Butter- Jif and reduced-fat Jif

I'm having a hard time paring down my Whole Foods bill, myself. I think the most essential items are gluten-free pasta, and a couple multi-purpose mixes, such as Pamela's Pancake and Baking Mix, and Pamela's Wheat-free Bread Mix. Between those 2 mixes, you can make just about anything.

-Sarah

[jaayimee]

Thank you so much for the responses. From these and reading other threads on this board I have learned a ton. I think I was making it more difficult than it is. I noticed while shopping yesterday that a ton of Walmart brand stuff has gluten free on the label. From looking at everything I think I should be able to buy my regular stuff with a few substitutions like the pancake mix, bread and pasta but I can successfully replace Jasmine rice for any pasta because I have always loved that rice. I didn't realize gluton was in so much stuff, even like the chapstick and shampoos. Do all of you have reactions if you use shampoos and stuff like that with gluton? I think I do when I think about it. Along with classic Celiac disease symptoms I have had many, many others. I have actually been on a search for why I am so sick for years. I've been trying gluten free for only 2 days and I'm hoping to feel better soon. What shampoos and soap do you use? Did all of you have to replace toasters and utensils?

Jamie

[buffettbride]

Replacing utensils and toasters are a must...and non-stick pans if scratched and plastic strainers, cutting boards, etc.

Just to be safe, I'd stick with gluten-free shampoos (many mainstream brands are) and definitely chapsticks and lipsticks and makeups.

Even the tiniest amounts will make you sick and damage your intestines so absolute care must be taken.

[buffettbride]

OK. Please ignore my Herbal Essences comment. I went to double check on the gluten-free status and as of March 2006 are not considered gluten-free. EEEGAAAAAAAAAAAAAAADS.

This explains a lot, though. We bought a new type of Herbal Essences last weekend and DD has been bloated and gassy and yellow-flakey-pooping all week.

Stick with Dove and you'll be OK. I know that for SURE.

[Ridgewalker]

OK. Please ignore my Herbal Essences comment. I went to double check on the gluten-free status and as of March 2006 are not considered gluten-free. EEEGAAAAAAAAAAAAAAADS.

This explains a lot, though. We bought a new type of Herbal Essences last weekend and DD has been bloated and gassy and yellow-flakey-pooping all week.

Stick with Dove and you'll be OK. I know that for SURE.

Ohhh I hate it when that happens. I only just realized a few weeks ago that my kids' toothpaste wasn't guaranteed gluten-free, and the company (Oral- doesn't recommend it for Celiacs!!! Ugh

-Sarah

[buffettbride]

Ohhh I hate it when that happens. I only just realized a few weeks ago that my kids' toothpaste wasn't guaranteed gluten-free, and the company (Oral- doesn't recommend it for Celiacs!!! Ugh

-Sarah

That happened to me last week too!!

DD w/ Celiac uses Crest so that is not a problem, but I read that about Oral B as well and that is what DS uses and they share a bathroom and I KNOW the toothbrushes touch the same counter and spitting and all that gluten that could be floating around.

I guess I know where I'll be tonight...at the grocery store!

[loco-ladi]

This will get you started. Perhaps someone can post the listing for the companies who will always list gluten as Kraft does.

So far as I have seen hormel foods does a great job of this as well... most of their lunch and breakfast meats are marked as well as some of their canned and microwave goods

Other than that, I read Eating Gluten-Free for Dummies and thought it was wonderful! Read all the articles on this and other sites, and get a book or two to help.

OMG I Loved this book, and the recipe for coffee cake is awesome! best $20 I spent for this diet!

Slowly start trying different bread/cookie/muffin mixes, pastas, cereals, etc

I have found all the "cause your special" brand mixes for baked goods to be good, cookies, brownies etc

[kabowman]

These are all great tips but one more, watch out for Wheat Free. I tried that early on but it was made with spelt which I looked up after getting sick and spelt is an alternative wheat.

I didn't replace my non-stick pans right away and paid the price by being sick, however, mildly at first and getting worse as time went on, by not doing that right away.

I have separate cutting boards, safe kitchen areas, only my food goes on our gas grill, etc. Watch out for charcoal.

It gets so much easier and will become second nature for you and the family, depending on how supportive they are...mine have been great and even my dad who only visits a couple of times a year gets it too, it just took a little longer because he isn't around it daily. Anyway, you will be so much happier healthy, eating better, and not sick all the time.

[MindyK]

Welcome Jaayimee,

I am in the same boat as you. I was diagnosed 2 weeks ago. I had been severely sick for the last 2 years. It wasn't until I threatened a "sit-in" in my doctor's office that I was finally granted an endoscope procedure. I had no clue what was wrong with me, but I knew, in my gut (no pun intended) that something was wrong. Once my doctor told me the results of the biopsy I was RELEAVED. I had no clue what the Celiac Disease was, what 100% Gluten Free meant or how much my life was going to change, but at least there was a way to start healing my body and get back to feeling like a normal person.

Two books I find extremely helpful are the Gluten Free Bible and Living Gluten Free for Dummies. They are both filled with good, easy to understand information done in a humorous way. These two books make understanding this quirk in my system a little easier.

I am finding the food, chemicals and spices to be a royal pain in the butt. One method I'm trying now is to make what I want from scratch. I plan out a week's worth of meals and spend some time either Saturday or Sunday making what I'm going to need for that week. So far I have made my own bread, noodles, soups and spices. It's time consuming, but until I have an idea of what I can buy from the store and learn to read the labels, I find it's safest for me and a lot more cost effective then the "Gluten Free" products.

The food restrictions are not my main concern. I am a beer drinker. I love Coors Light. Not being able to have that is driving me crazy. I have tried the Redbridge beer and don't care for it too much. If anyone out there knows of a Gluten Free beer that is similar to Coors Light I would love to know about it.

I want to thank all of you people who spend time enlightening us gluten free rookies on how to live a safe life.

[Ridgewalker]

So far I have made my own bread, noodles, soups and spices. It's time consuming, but until I have an idea of what I can buy from the store and learn to read the labels, I find it's safest for me and a lot more cost effective then the "Gluten Free" products.

Wowww, you made you own homemade noodles??? I am way impressed, you rock. I haven't gone there!

-Sarah

[kbtoyssni]

Thank you so much for the responses. From these and reading other threads on this board I have learned a ton. I think I was making it more difficult than it is. I noticed while shopping yesterday that a ton of Walmart brand stuff has gluten free on the label. From looking at everything I think I should be able to buy my regular stuff with a few substitutions like the pancake mix, bread and pasta but I can successfully replace Jasmine rice for any pasta because I have always loved that rice. I didn't realize gluton was in so much stuff, even like the chapstick and shampoos. Do all of you have reactions if you use shampoos and stuff like that with gluton? I think I do when I think about it. Along with classic Celiac disease symptoms I have had many, many others. I have actually been on a search for why I am so sick for years. I've been trying gluten free for only 2 days and I'm hoping to feel better soon. What shampoos and soap do you use? Did all of you have to replace toasters and utensils?

Jamie

Yes, you absolutely have to replace your toaster and wooden spoons/cutting boards and probably your collender and other strainers. Other items can be a judgment call depending on how scratched up they are.

[jaayimee]

Welcome Jaayimee,

I am in the same boat as you. I was diagnosed 2 weeks ago. I had been severely sick for the last 2 years. It wasn't until I threatened a "sit-in" in my doctor's office that I was finally granted an endoscope procedure. I had no clue what was wrong with me, but I knew, in my gut (no pun intended) that something was wrong. Once my doctor told me the results of the biopsy I was RELEAVED. I had no clue what the Celiac Disease was, what 100% Gluten Free meant or how much my life was going to change, but at least there was a way to start healing my body and get back to feeling like a normal person.

Two books I find extremely helpful are the Gluten Free Bible and Living Gluten Free for Dummies. They are both filled with good, easy to understand information done in a humorous way. These two books make understanding this quirk in my system a little easier.

I am finding the food, chemicals and spices to be a royal pain in the butt. One method I'm trying now is to make what I want from scratch. I plan out a week's worth of meals and spend some time either Saturday or Sunday making what I'm going to need for that week. So far I have made my own bread, noodles, soups and spices. It's time consuming, but until I have an idea of what I can buy from the store and learn to read the labels, I find it's safest for me and a lot more cost effective then the "Gluten Free" products.

The food restrictions are not my main concern. I am a beer drinker. I love Coors Light. Not being able to have that is driving me crazy. I have tried the Redbridge beer and don't care for it too much. If anyone out there knows of a Gluten Free beer that is similar to Coors Light I would love to know about it.

I want to thank all of you people who spend time enlightening us gluten free rookies on how to live a safe life.

I know that that relieved feeling! I've been seeing doctors for 14 years trying to find out why I'm so sick all the time, was even told to see a shrink by one doctor. Had my gallbladder removed almost 3 years ago and I have a feeling that was unecessary. Once I had dd everything went nuts. Needless to say we were relieved to finally find the reason. I'm having a scope in a few weeks, they found it with blood tests. Love this gastro I'm seeing now, he has saved my life. Will be interesting to see how much damage has been done to my small intestine.

So if I have this right from everyones posts Crest toothpaste is okay and so is Dove soaps, how about Dove shampoos. How about laundry detergent? I'm using Era Free right now and Downy Free fabric softner. It's funny because I use Berts Bee's chapstick and dove unscented soaps already due to some serious chemical sensitivities (sp?). Me and dd (who is 14) go round and round about smelly stuff constantly. How about dishwashing soap? I'm doing them by hand right now due to dishwasher acting up. I also use Act mouthwash. Also, is all baking powder and soda okay? And I can not find anything on the vanilla bottles that look like they have gluten in them but how do I know the alcohol that is in them is okay? and is all cornstarch okay? I know, I am just full of questions!

I ordered a book the other day called Gluten Free Diet: A Comprehensive Resource Guide

By: Shelley Case

Has anyone read this book? I also have 5 others on interlibrary loan order but can't remember the names right now.

Mindy,

What about spices are you finding to be a pain? I've been looking at mine and they seem okay. I mostly use Penzeys and a few Island Spices brand I've picked up at Sam's Club.

One last question that might be stupid so sorry in advance.... I am assuming that since my pots and pans are stainless that those are okay to use still?

Thank you everyone,

Jamie

[buffettbride]

I have tried the Redbridge beer and don't care for it too much. If anyone out there knows of a Gluten Free beer that is similar to Coors Light I would love to know about it.

Maybe with a little more time between Coors Light and Redbridge you'll like it more. I live near Golden, CO and was just thinking how nice it would be if they had gluten-free beer.