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Dx'd Yesterday...

amberleigh

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amberleigh Contributor
amberleigh
Posted

I was just dx'd with celiac disease yesterday (colonoscopy/endoscopy following up on a positive blood test) and have no idea where to start with a gluten-free diet. I am the epitome of a junkfood eater, with Taco Bell being a food group for me.

I have an appt with a dietician, but it's not until the 27th and I'm trying to get in with someone sooner...but in the meantime, are there good websites? I really would like to know specific products I can eat...i.e. Tostitos chips or Chips Ahoy chocolate chip cookies...if possible. I've never read labels in my life. What are the things I should be looking for, other than the obvious (wheat, rye, barley, oats)?

Also, I have 3 children (twins who are 20 months and a son who is 2 months)...should I request that they be tested by blood? What it the % possibility that they have celiac disease as well?

I suppose I was misdx'd with IBS about 6 years ago. Had a flare up of diarrhea for about 8 weeks. With some meds and trying to avoid what I thought were my trigger foods, I was able to control it. Didn't even use the meds for the most part. Now, after I stopped nursing my son, I had a flare up again. With a more proactive doctor this time around, she sent me to a GI (I also had anemia and elevated liver enzymes this time around), and here I am.

Thanks for any advice you can offer. I appreciate it.

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whitball Explorer
whitball
Posted

Welcome to this site. This site is where I get most of my information. I'm not sure that the dietician will provide alot of information. I requested a consult also, but the person I saw did not have experience with this disease, so she was not very helpful. I also want to congratulate you on getting a diagnosis and ending your misery. The journey of being gluten free is not always easy and you will probably feel crappy for awhile until you figure out things. Start simple with basics of veggies, meat and fruit. Do yourself a favor and don't add a bunch of new foods. You will need to allow your insides time to heal. I would make sure that your children are tested. Good luck.

Worriedwife Apprentice
Worriedwife
Posted

This is probably the best website for your diagnosis. There are a lot of very knowledgable people posting to this board. Also, the main page can direct to you lists of ingredients that are safe, and those that are not.

The bad news is you'll probably have to give up going to Taco Bell. I'm pretty sure that I seen several posting indicating that there is no safe food there. Also, take Chips Ahoy off of your list of things to eat.

But, that doesn't mean you can't eat things that taste good. You just have to learn how to make safe substitutes. You'll probably have to start making more of your own food, and eating less (or none) prepackaged junk food.

If I remember correctly, the Lays chips in a can are gluten gree and most corn tortilla chips are good to eat. (Please correct me if I'm wrong about this). You can get gluten free cookies at natural food stores, but they are pretty expensive.

I would start with naturally gluten free foods, like veggies, potatoesand meat or fish. Salads are good too, but you'll need to be careful of dressings. It will be hard in the beginning, but stick with it and things will get easier.

amberleigh Contributor
amberleigh
Posted
  • Author

Thank you both very much for your replies.

I guess I'm looking for an easy route, which I'm sure there isn't one. Grocery shopping is going to be a whole new experience for me and since I have not yet met with a dietician and don't really know what to look for on labels (nor do I have the time with 3 kids under the age of 2 to read every label in the store)...is there a list of products somewhere? I mean, I know I can go to Whole Foods or Trader Joe's or a healthfood store and get specific gluten-free products. But I'm talking about just regular food that happens to not be made with gluten, ya know?

For example...Fritos corn chips (I have no idea, just throwing it out there). If I knew that of all the chips in the chip aisle, these were safe to eat, it would just make the first few shopping trips until I can meet with a dietician so much easier.

Thanks again.

Frazzled,

ETA - I just came across this site... Open Original Shared Link

Is this pretty accurate?

JennyC Enthusiast
JennyC
Posted

Welcome!

I hate to be the one to break it to you...but life is going to change majorly. I'm a college student with a young son and we used to eat out a few times a week before he was diagnosed. I don't feel that it's safe to eat out at those places anymore. Some people eat some items at Wendy's and other places, so it's best that you go to the websites or call the restaurants. The Outback and PF Changs have gluten-free menus.

What you can eat? I suggest that you do a search on this forum for words like "normal foods" and "favorite." By the way, this is the best place for information. There are many normal foods that you can eat. The best thing to do is stick with the companies that will clearly list their gluten. Some of the big companies are Kraft and General Mills. Each of these companies includes many brands. I will post a link to a list of companies that will list their gluten. Hormel has a gluten free list on their website, and some of their convenience foods are included. Call all other companies to find out if their food is gluten free if they do not clearly list their gluten. You must read every label every time. Things to watch out for are natural flavors, spices, thickeners, broth, and some watch for modified food starch.

There are many tasty gluten free specialty foods. I'll list some popular brands and then you can do searches for them to see what they offer: Kinnikinnick, Glutino, Ener-G, Tinkyada, Gluten Free Pantry, Pamela's, and Health Valley. You can buy gluten free cookies and brownies, etc, but it's much cheaper to make your own.

I convert old recipes by using 3 parts white rice flour, 2 parts potato starch, 1 part tapioca flour/starch, and 1 tsp xanthan gum for every 1.5 cups of flour. In addition to those flours I would pick up brown rice flour, potato flour, corn starch, almond or flax meal, and a bean flour like garfava. I bread meat for frying in a mix of white rice flour and and corn starch. glutenfreeda.com has lots of great gluten free recipes. Many websites like allrecipes.com and recipeszaar.com also have gluten free recipes. Mostly I just convert regular recipes to gluten free using the formula given above.

You should also search for cross contamination. That is an issue in itself.

Although it seems very complicated now, it will get much easier. :)

Open Original Shared Link

JennyC Enthusiast
JennyC
Posted
Thank you both very much for your replies.

I guess I'm looking for an easy route, which I'm sure there isn't one. Grocery shopping is going to be a whole new experience for me and since I have not yet met with a dietician and don't really know what to look for on labels (nor do I have the time with 3 kids under the age of 2 to read every label in the store)...is there a list of products somewhere? I mean, I know I can go to Whole Foods or Trader Joe's or a healthfood store and get specific gluten-free products. But I'm talking about just regular food that happens to not be made with gluten, ya know?

For example...Fritos corn chips (I have no idea, just throwing it out there). If I knew that of all the chips in the chip aisle, these were safe to eat, it would just make the first few shopping trips until I can meet with a dietician so much easier.

Thanks again.

Frazzled,

ETA - I just came across this site... Open Original Shared Link

Is this pretty accurate?

That list is pretty old. Manufacturers can change the ingredients at anytime. That's why it's best to stick with companies that will clearly list their gluten. (See the link I just posted.) If you really feel that you need a list right now, I can email you one updated 2/07 if you send me a private message with your email address.

Buttercup Rookie
Buttercup
Posted

Here is a list that I have found that might be useful to you. I went through the list and wrote down the products that I use to keep in my purse for shopping trips.

Open Original Shared Link

This site has lots of recipes to get you started.

Open Original Shared Link

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amberleigh Contributor
amberleigh
Posted
  • Author

Thank you everyone!

JennyC-I tried to send you a message...I hope it worked.

One more question for you all (well, I'm sure I'll have TONS, but for now)...

What are the ingredients I should be looking for on the labels? I know wheat/barley/rye/oats...but what are the other ones? I saw something about malt? I guess I don't know the "secrets" of labels yet. Please help!

Guest micah
Guest micah
Posted

Hi Amber,

I'm pretty new to this too, it is getting easier all the time though. If you go to the home page of celiac.com and click on "Site Index" then click on "Safe Gluten-Free Food List / Unsafe Foods & Ingredients" that'll give you a list of ingredients that are safe/unsafe.

As for grocery shopping, I'm sure Noglugirl will also be along soon to give you a present of a great list of stuff. Here's a few ideas

One thing you can be sure of is meats, fish, chicken, veggies and fruits (fresh, frozen, canned), nuts -rice, corn, anything that is naturally wheat-gluten-free is a good place to start.

I also quickly found some of my favorite foods that were gluten free like Jello Pudding and Ore-Ida French Fries and made sure that I always have them in the kitchen so that I never have to feel too deprived and go crazy. Let yourself have your favorite foods that are gluten free, it made it a lot easier for me to make the change. At first it is a challenge, but it is so worth it to feel better.

Good luck,

Micah

happygirl Collaborator
happygirl
Posted

You need to look for wheat, rye, barley, malt (malt is often derived from barley), and oats.

Anything that has flour/unbleached/enriched flour is wheat flour. Chips Ahoy and all 'normal' cookies have wheat in them. There are gluten-free alternatives.

All regular pastas have flour in them. You'll need an alternative like Tinkyada, a rice based pasta.

I don't recommend relying on lists. Your best bet is to learn to read labels. That is the only way, coupled with calling a company to ask, that you are eating safely. If you don't know that its safe, don't eat it.

happygirl Collaborator
happygirl
Posted

And, all first degree relatives are recommended to be screened for Celiac. This includes parents, siblings, and kids. There is about a 1 in 20 chance that a family member of a Celiac has it.

Phyllis28 Apprentice
Phyllis28
Posted

Reading labels will become second nature over time and will not be a time consuming process. Many companies have their labels on their website. You could do some basic research from home before you go to the grocery store. You still need to read the label when you get to the store since the website may have the current ingredients but the store shelf may have an older product.

My basic rule for buying packaged food is that if I can not indentify all ingredients as gluten free I don't buy it. You can also buy the product and research it when you get home. Most of the processed foods I have in my pantry have no more than 4 ingredients.

Being gluten free means you will spend more time cooking. I make sure I have left overs that can be reheated.

I know it is difficult now but it will get easier.

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