This is just in real life.  And let me tell you I don’t get out much.  I’m kind of shy in real life, so it’s not like I’m out there networking or shaking hands.  They’re just other school parents that know I’m gluten free because they know my kids.

The one thing that I’ve heard from just about everybody I’ve talked to about this is how hard it is to find gluten free products and how expensive it is.  This is always a surprise to me because there are really only maybe a dozen specialty products that I buy on a regular basis.  Other than that I shop at the regular grocery store.  I’d say probably 85% of what we eat is the exact same thing everyone else eats.

Talking to these people reminds me of how confusing and time-consuming grocery shopping was at first.

The first thing you should know if you’re new to gluten free is the things that are naturally gluten free.  Fresh unmarinated, unseasoned meats, fresh fruits and vegetables, potatoes and rice.  Milk, cream and butter are also gluten free.

After that, there are three major food brands that I recommend people focus on when they’re learning the gluten free diet.  Kraft, McCormick and Frito Lay.  These companies all practice what we call full disclosure.  You see, legally companies can include gluten within the phrases “natural flavor” or “spices” without telling you what’s in there.  These companies will not do that.  All you have to do is read the labels and the ingredients will be listed in plain English.  There are other companies that also practice full disclosure, but with these three major brands you can go a very long way.  So we’re just going to start with these.

Here is a copy and paste of Kraft’s gluten labeling policy, that you can also view HERE .

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You might be thinking, okay fine, but that’s just Kraft.  Now I can buy cheese and salad dressing.  But actually, Kraft is a large corporation with dozens of brands.  Look on the back of a lot of the products you’ve been buying for years.  There is a good possibility that it’s a Kraft brand.  Here are just a few examples -

Jet Puff Marshmallows, Cool Whip, Grey Poupon Mustards, Kool Aid, Jell-O, Good Seasons, Cheese Whiz, Knudsen, Easy Cheese, Oscar Meyer (mmm… bacon….), Philadelphia Cream Cheese, Planter’s Nuts and Velveeta.

Keep in mind that that just means that Kraft promises to label any gluten in plain English.  You still need to read the label.  Product ingredients can (and do) change at any time.

McCormick’s gluten labeling policy can be viewed at there website by clicking HERE .  Here is a copy and paste -

Do your products contain gluten?

All of our single ingredient spices and herbs are gluten-free and 100% pure, with nothing added to them. All of our extracts, including Pure Vanilla, are also gluten-free. Some of our products do contain gluten, and this will be clearly listed in BOLD type within the ingredient statement. We do not maintain a list of gluten-free products, as our formulas change from time to time.

…………………………..

McCormick not only has all of those single ingredient spices, but they have spice mixes, seasoning packets, flavor extracts and food coloring.  We use the Original Taco Seasoning packet at least once a week.  Reading the ingredients is very important however, because one type of product may be gluten free, but a very similar product can contain gluten.

Frito Lay is HUGE in our house.  When you feel like you’re always having to tell your family and friends that you can’t eat this or that, or you can’t eat that, or go to that restaurant, grabbing a bag of Cheetos or Fritos is like grabbing a great big bag of NORMAL.  And if you’re just starting this diet, normal is soooo important for you right now.

Frito Lay actually has a HUGE gluten free product list, which can be viewed HERE .  It’s a long list, so I decided not to copy and paste it.  Take note that the regular Nacho flavor of Doritos are NOT gluten free.  Remember to read, read, read the labels.   Frito Lay also says that the products on this list are made on the same equipment as products containing gluten.  They wash the equipment as thoroughly as possible, but can’t guarantee 100% that some gluten residue won’t remain.  To be honest, I was glutened by a bag of Doritos a couple times, but considering the couple dozen bags of Frito Lay products that we go through in a month for the last four years, that’s pretty good for products that are produced on the same line as gluten.  When that did happen, I contacted Frito Lay and let them know (gave them all the codes on the bag).  They were very apologetic and said they’d forward the information to the plant the made the bag.  That was a couple years ago and I haven’t had a problem since.  It was a couple months before I was brave enough to try them again, but after that no problems.

When I first started eating gluten free, I pretty much stuck to McCormick, Frito Lay and Kraft brands, with an occasional email to a company to check on something.  It was a year or more before I started to really expand past that.  So with foods that are naturally gluten free, and these three companies, you can get through that first few months and weeks where you’re still not feeling well and really just need to know what to eat.

I hope that helps everybody.  I’m planning on doing a series of posts highlighting other brands that I use and trust.  I just wanted to be able to get you started on things you can get at any grocery store in the country.

Take care everybody.  And let me know if there’s a brand or type of product you want me to look into, or if you have any questions.  I really like being able to help people who are just getting started.

The folks at the Celiac Disease Online Support Group put a lot of work into maintaining a very thorough and up-to-date gluten-free product list.

Find it here.

I never got involved in the forum there, so I hadn’t really used the list much.  I did fine sticking to the Kraft/ConAgra/FritoLay/McCormick products and only rarely needed to verify anything else.

So anyway…

Go take a look.   I’ll be doing the same.

In Part 2, we discussed how to create a safe environment for your gluten-free food.

Today we’ll be discussing why you have to verify EVERY SINGLE THING to determine its gluten-free status and how to best do that.

The FDA is actually working on better labeling requirements for gluten-free food (as well as other food intolerances).  You may have already seen notes at the bottom of ingredient statements that say “Processed on the same equipment with wheat, soy and tree nuts.”  So they understand exactly how specific people with food intolerances have to be.

The easy part of being on the gluten-free diet is not eating the obvious things – bread, pizza, pasta, crackers, cookies, etc.   If that was all there was to it, it would be easy.

But hidden gluten is where the real work comes in.  The short version is that you MUST verify every single thing that goes into your mouth whether you think it might have gluten in it (or on it) or not.   Because a lot of it is what I call Stupid Gluten.    Just because there is no good reason a product should have to have gluten in it, yet there it is.

It’s not really stupid from the food manufacturer’s point of view though.  Wheat and barley (malt) are actually very good flavor enhancers.   Infuriating Gluten would probably be a better description, but I think Stupid Gluten just sounds better.

Some examples of Stupid Gluten (or sometimes just surprising) would be -

Red  Licorice ( most of which is actually made from a wheat based dough – who’da guessed?)

Pringles

Campbells Cream of … Soups

Tea (Bigelow and Traditional Medicinals for sure have a few with gluten)

Soy Sauce

Oatmeal (usually processed on the same equipment as wheat)

Almost all cereals, even rice krispies and corn flakes

Spice mixes

Imitation Crab

Rice Dream rice milk

Candy Corn

Nuts and seeds – sometimes are dusted with flour or as part of the seasoning mix

CHARCOAL (for pete’s sake)

Nathan’s Hot Dogs

And on, and on and on…  And we haven’t even gotten to arts and craft supplies, shampoos, cosmetics, health and beauty items, lotions, soaps, cleaning products, etc.

You also have to verify that gluten isn’t hidden behind ingredient statements such as “natural flavorings” or “modified food starch”.  Either could contain gluten.

So you can see, you have to verify EV.ER.Y.THING.   That list could easily be three times as long, but I think you get the point that it’s in the weirdest and stupidest places.

So Verify, Verify, Verify.  You also have to verify often.  Read the label every time you buy a product, even if you just bought it – ingredients change all the time.   For gluten-free product lists from manufacturers, verify every few months.

I have found that the easiest and most straight-forward way to verify a product is to go to that product’s website.   99.999% of products have a website nowadays.   If there is a search function, I just type in gluten.  If not, find the FAQ (frequently asked questions) section.  The FAQ is sometimes not obviously shown.  Look under customer service, or sometimes at the very bottom of the homepage.   Many times you can find the gluten question already addressed in the FAQ.

If not, you can either email the company or call them.   Most companies I’ve emailed have gotten back to me in a day or two.  I’m not a caller (yea, I’ve got issues – another topic for another day…), but I’ve heard that a very nice person on the other end who gets the question of the gluten status 20x a day looks up your product and lets you know if it’s gluten-free.

There are some companies that have a policy of full disclosure on all their products.  They won’t hide gluten behind phrases like “natural flavorings” or “modified food starch”.  These companies request that we read the full ingredient label each time we buy a product, but in turn they also promise to fully disclose any and all gluten-containing ingredients.  The companies I trust and have never had any problems with are:

Kraft  – You’d be shocked at how many food “brands” are actually Kraft companies.

McCormick – the spice and seasonings people

Frito Lay

ConAgra – Again, shocking how many food brands are ConAgra companies.

There are other companies with this policy, but with just these four it’s totally easy to go grocery shopping.  I just focus on Kraft products, to be honest.

All that being said, I’ve also had run ins with products that were verified gluten-free and a couple even LABELED gluten-free that made me sick.  (None of the above companies.)  It can take some trial and error to narrow down the culprit. When you’ve figured out what is making you sick, there may be several things going on -

- Cross contamination on the packaging of the product.  Maybe you got gluten on your hands outside the house, maybe the person stocking the shelves at the grocery store just came from stocking the flour aisle.

- Cross contamination within the product.  Just like in a home kitchen, in a food manufacturing plant, it’s easy for gluten to inadvertantly contaminate a batch of food.   It doesn’t happen often, but it can happen.

- Another food intolerance.  During the healing phase of celiac disease, other food intolerances can come and go.  Dairy is almost always a co-existing food intolerance for the first several months.  The reason for this is that the tips of the intestinal villi that are destroyed in the celiac process are where the enzymes for digesting dairy are located.  It can take up to a couple years for the villi to fully heal.  So it can take a while.  People with one food intolerance are also more likely to have other food intolerances.   Keep a food / symptoms diary and see if you can figure out what the pattern might be.

Don’t worry though, after a while, it all actually becomes second nature.   Just take one thing at a time.   I found that just knowing that Kraft, McCormick, Frito Lay and ConAgra would put gluten in plain English in the ingredient statement has fed me just fine up to now.   Probably 90% of what I buy is from those companies.

Makes the Atkins Diet look easy now, huh? 

In order to keep your food and ingredients safe in a shared kitchen, you’ll need to be honest with yourself about what you’re dealing with as far as the other people in your house are concerned.   For the most part it isn’t reasonable to expect everyone who enters your kitchen to be just as careful as you are with your food.   So you have to plan accordingly.   Especially at first because everyone is learning this along with you.

The best case scenario would be that you have an entire cabinet in which to keep your pantry foods and an entire shelf or drawer in the refrigerater in which to keep your refrigerated foods.

If you can do that,  find a way to visually block off those areas.   A cheap and easy way to do this is with brightly colored post-it notes, a piece of paper with a note indicating that this is your area (For Dad Only!!  or Gluten-free only, please don’t touch!!)  taped to the cabinet, shelf or drawer.

If you don’t have enough space to commandeer whole areas, you can also go the box route.   In most stores such as Walmart, Target, etc. you can get various sizes of plastic boxes with lids.  (Make sure you measure the areas where you’re going to keep your food so you don’t end up with boxes that don’t fit.)   You can put your food in the boxes without anyone having to worry about using the wrong thing.

If you don’t have the space to do that, you can also label the lids of all your foods and secure them with rubber bands.   In theory just a note or label written on it should keep people out, but I’ve learned from experience that most people are on autopilot and just grab the mayo, peanut butter or whatever and don’t pay too much attention to notes.  So a rubber band usually does the trick to remind them that they shouldn’t be using it.

You probably won’t have to go to such extremes forever.   Once the whole household is used to everything you should be able to relax a bit.  But when you’re in the learning/healing process, it’s better to be safe than sorry.

Also, leave a comment and let me know if you have any questions about this, or anything gluten-related that I can address in future blog entries.  I’d love to help.

If you’re just getting started on the gluten-free diet, a kitchen makeover is essential.   In the best case scenario, my advice would be to have a gluten-free household at least for a few months in order to help in the recovery of the person recovering from gluten-induced health problems.    But that isn’t always possible.

If you have decided to have a shared kitchen, or having a completely GF kitchen just isn’t possible, there are some ways to make it work.

You will need:

- Safe ingredients and a safe place to store them.

- Safe cookware, bakeware and cooking utensils, and a safe place to store them.

- Safe cleaning items and a safe place to store them.

I guess the best place to start is an explanation of WHY all of this is necessary.  The short answer is that gluten is sticky.  It sticks to and in everything.  Remember making paste out of flour and water in elementary school?  Well, it’s the gluten that makes makes it stick.

Since gluten causes an autoimmune reaction (not an allergic reaction) in people who are intolerant to it, as soon as even a tiny amount of gluten enters your system that reaction starts.   It’s more comparable to food poisoning than it is to an allergic reaction, because your immune system incorrectly thinks that gluten is a toxin and will do everything it can to get it out of your system.

It is very important for someone on the gluten-free diet to have complete understanding and cooperation when it comes to their food and food preparation.   If not, their recovery will be slow and they may develop worsening symptoms or other related health problems.

Well, that’s it from me for right now.  More to come soon.

So… if we want good food (and we do) I’ve got to start planning NOW.   I’m not sure if we’re staying two or three nights yet, so I’ve got to prep for about 3+ days worth of food.   Plus, taking into account the varied appetites of a 3yo and a 5yo, I need to bring every GF snack food I can lay my hands on.   The good thing is that we’ve got a campstove so I can really do everything other than bake out there.

Hey!  This is kind of like Dinner Impossible.

Here’s my list of probable meals

DINNERS -

Chili – easy for the first night

Hamburgers and grilled potatoes

Steaks or tri-tip and sweet potatoes in foil (?)

Sides – mostly salad and raw veggies

LUNCH CHOICES -

Sandwiches

Pizza (if I’ve got time to premake it)

Tacos

Taquitos (Delimex beef in corn tortillas)

Hotdogs (no bun)

BREAKFASTS -

Pancakes

Eggs and bacon

Crackers w/cheese or PB (my kids like this for breakfast)

SNACKS -

Cool Ranch Doritos

Cheetoes

Fruit snacks

Cut fruit

Carrots

Chips and salsa

Craisins

GF Candy

GF Pretzels

DESSERTS -

S’Mores (of course)

Cookies and ice cream (? might get one of those ice cream ball things and some mix-ins ?)

Some sort of cake (maybe angelfood?)

————————–

So…  I’ve got to premake -

Graham crackers

Hamburger buns

Pizza crusts

Cake

Bread

Pancakes

Taco meat

Chili  (Hubby’s job..)

I think that’s it.  Should be easy enough.  Plus, I’ll be able to share all my recipes, tricks, tips and gluten-free products for everything.     I’ve got a great idea for the s’mores too!

It should be a post-er-iffic week.

2.  My kids are happy and healthy.  I’m so glad I figured all of this out for their sakes.  Their lives will be so much happier knowing about this.  They may go in and out of remission (hopefully) throughout their lives, but they will always know that they are prone to it.  They won’t have years of mystery health problems that limit their lives.

3.  The support and understanding of my family and friends.   Everyone has been great about the details and oddness of all of this.   Nobody makes me feel weird or out of place about it.  I love it when I try a new GF recipe and they like it as much as I do.

4.  Bonus weight loss.  I was a little bit overweight before I went gluten-free.   I lost 30 pounds within six months of being on the GF diet with no additional diet or exercise.  WooHoo!

5.  I feel no guilt at all eating “bad” food.  If I can’t eat gluten, I’m going to eat ice cream, chocolate, fried food and junk food to my hearts content, thankyouverymuch.    When I was losing the weight initially, it was fun to sit there eating a dish of ice cream and tell my husband that I lost another three pounds that week.  Heeheehee…

6.  All the good GF food out there that makes life so much easier.  There are only a couple things that I can’t either buy or successfully replicate (so far anyway) – cheese crackers and french bread.   Other than that I can eat just about anything -  there is GF pizza, pasta, bread, donuts, cookies, crackers, etc.

7.  All the restaurants that have gluten-free menus – Outback, Pei Wei and PF Changs have GF menus at every restaurant.   Lots of places have GF menus online that you can print out and bring with you.

8.  Kraft, McCormick, Con-Agra and Frito-Lay.   You’d be shocked at the percentage of foods in the average grocery store that are made by these companies.   They all clearly and thoroughly label gluten.   If there is gluten in it, or a chance of second-hand gluten, they label it.   If there is no gluten listed, I know it’s safe to eat and I don’t have to give it another thought.

9.  Online gluten-free statements and lists.  Most companies and restaurants have information on the gluten status of their products and recipes.

10.  It’s actually kind of fun to hunt down gluten-free recipes or products.   It’s very rare for me to run into something that I can’t make or find anymore.

11.  Trying things that aren’t good or recipes that don’t turn out is actually pretty funny.   Gluten-free baking brings a whole new level to the word “inedible”.   A GF friend of mine put unsuccessful bread crumbs out once that the birds and squirrels wouldn’t even eat.  Now that’s comedy.

12.  I’ve only got about a dozen specialty products that I buy on a regular basis.  Other than that, it’s just regular food.

13.   I rarely catch colds or flus anymore, and don’t get allergies anymore.   My kids don’t get sick as often either.   Our immune systems are no longer pre-occupied with the perceived threat of gluten, so it can fight off actual illnesses.

So that’s the upside.  The upside far outweighs the downside.  The downside is mostly irritations that usually don’t bug me, but there are just those days when they do.

1.  Second-hand gluten.  Basically akin to cross contamination and raw chicken.  You can’t just pick croutons off a salad or take the bun off the burger.   Just the residue is more than enough to cause a reaction.  My husband can’t even kiss me if he’s eaten gluten.   If it wasn’t for this part, being gluten-free would be like a walk in the park.

2.  Loss of spontenaity.  Can’t just throw the kids in the car and take off for the day.  In order to go somewhere for the day, I have to cook at least two meals and gather snacks together for me and the kids.  No drive-thru for us.

3.  When someone makes something gluten-free especially with me in mind, and they don’t know about item #1.   It means so much to me when someone goes out of their way, but then I have to decide whether to (a) hurt their feelings or (b) be sick for days.   Luckily, my family knows all about #1, so I don’t run into this much.

4.  My reactions to second-hand gluten.  Let’s see if I can remember them all - painful electric-shock-type nerve pain to the point I can barely walk, nightmares, nighttime insomnia mixed with daytime exhaustion, depression, anxiety, irritability, stomach pain, IBS-D and/or IBS-C, painful rashes, itchy ears and scalp, loss of balance, slurred speech (if it sounds like I’m drunk at 2 in the afternoon, I’m not – I promise), memory and concentration problems, brain fog, migraines and hair loss.   There are over 200 reported reactions to gluten – those are just mine.

5. My daughter’s gluten reaction.  ADHD-type mood reactions, tummy aches, clinginess, loudness, meanness, mood swings.   We just did a gluten challenge on her (to determine if she was still having reactions – kids sometimes go through periods of remission that can last years) and the results are still very FRESH in my mind.

6.  My son’s gluten reaction.  Autistic-type personality before diagnosis.  After just a few weeks, he became a fun, goofy, lovey-dovey little boy.  We haven’t done a gluten challenge on him and probably won’t for another year or so when he’s a little older.

7.  Having to cook all the time.   Don’t get me wrong, I love that there are so many great products, but I’d love to be able to give my kids some frozen chicken nuggets or go through a drive through for some good, old-fashioned mindless eating once in a while.

8.  Having to verify products.  You know that 1-800 number on the back of products?  Well, that’s for people like me.  I’ve been known to call those numbers while grocery shopping.

9.  Products that sometimes ARE gluten-free and sometimes AREN’T, but won’t change their label to reflect that.  Eating Hidden Valley Ranch is like playing russian roulette.

10.  Products that insist they ARE gluten-free, but aren’t.   Having celiac is like being a canary in a coal mine.  You can’t sneak gluten past us.  Wish ya could.  Really do.  Life would be so much easier.

11.  Being very, very, VERY shy (in real life) and having to explain all this stuff to a waiter, manager, kitchen staff, etc. in order to eat out in a restaurant.   Other than restaurants who have gluten-free menus already or restaurants that are known to know about the GF diet, or pre-arranged food by hotels we’ve stayed at, I have only eaten out twice since I was diagnosed a year and a half ago.  I MUST get over this.

12.  Having the manager at a restaurant roll their eyes and glare at me when I tried to do #11.   That happened the very first time I went out after diagnosis.  That is the biggest reason I still have such a hard time going out.

13.  Pretending like it’s always easy.   For the most part it’s easy because the alternative is such a horrible way to live.  But then again, there are those days when it’s hard to have to figure everything out, plan for everything (including “spontenaity”), avoid second-hand gluten, etc. with a smile plastered on my face.

I’m very lucky to have such supportive and well-informed family and friends.   I don’t want them to think that this is hard.  It just sometimes is.  The upside is that every single thing on this list is all worth it 100x over to not feel like #4 every minute of every day for the rest of my life.  And my kids not having to feel like #5 and #6?  I’m truly blessed.

I’ve been gluten-free for about a year and a half, so even though I’m not totally a veteran, I’ve been through the initial phase of decontaminating the kitchen, finding out what products are worth their weight in gold and which products the dog won’t even eat.

Being a junk food junkie AND having two pre-schoolers, I think I’ll start off with a list of my favorite mainstream gluten-free junk food.

Cool Ranch Doritos (not classic Nacho – it has wheat starch)

Cheetos

Lays Stax (not Pringles)

Fritos

Easy Cheese (the spray cheese – not the bacon kind though)

Mission Tortilla Chips

Salsa

M&M’s  – all but the crispy kind

Most See’s Candy (http://www.kintera.org/site/pp.asp?c=ewK0LjP7E&b=34870)

Plain Hershey’s Kisses

Popsicles

Peanut Butter

Most sodas

Fruity Pebbles

Cocoa Pebbles

Remember to ALWAYS (!!) read labels and verify products for yourself.   Companies can reformulate products at any time.  Sometimes they add gluten for whatever reason.   Up until a few years ago Kellogg’s Corn Pops were gluten-free.  Then all of a sudden they weren’t.