Here is a quick list of items that really are gluten-free even though there might be something out there that makes you think they aren’t.

Vinegar

Two times since Emma as been diagnosed, a gluten-related dietary restriction has changed for us. This was the first.

Emma was diagnosed in June of 2000. At that time I was trying to figure out what to feed Emma that didn’t have vinegar. By the end of that year, the American Dietetic Association officially determined distilled vinegar is safe for people on the gluten-free diet. Boy did that make life easier. The only vinegar that’s not safe is malt vinegar.

You may still find outdated information online about vinegar. The best info I have seen on this comes from Open Original Shared Link Please refer to this article for additional information.

Oats

Oats was the second gluten-related dietary restriction that changed for us. Open Original Shared Link wrote about this in March of 2003. That’s the approximate time the American Dietetic Association again made a change. It said uncontaminated oats are safe for celiacs. However additional articles in the last 8 years by celiac.com followed up on some Open Original Shared Link, and additional studies saying they areOpen Original Shared Link

Bottom line, if you’re going to try to incorporate oats into your diet, DON’T buy Quaker or your local generic brand. You must look for guaranteed gluten-free oats, like the ones made from Open Original Shared Link

Glutinous Rice Flour

Yeah, don’t let the name confuse you. Glutinous Rice Flour and Sweet Rice Flour are the same thing.

“Sweet rice flour is ground from short-grain glutinous rice, aka ‘sticky rice.’ Don’t worry, though; the fact that it’s called glutinous rice does not mean that it contains gluten. Rather, this rice has a much higher starch content than other kinds of rice, making it an extremely efficient thickening agent for sauces or binder for things like mochi and noodles.” Open Original Shared Link

I use sweet rice flour in my Holiday cookies. I buy it at Asian Food Markets, although some larger grocery stores might be carrying it.

Whey

At first glance it may look like wheat, or a derivative of it. But in actuality, according to Open Original Shared Link, Whey is “a milk serum, separating as liquid from the curd after coagulation, as in cheese making.” So if you’re dairy free, you should worry about whey, but not if you’re gluten-free.

Monosodium Glutamate (MSG)

Again, because of the word glutamate, which sort of sounds like gluten, people think it has gluten in it. It is onOpen Original Shared Link Tricia Thompson, the Gluten Free Dietitian, says “There may be other reasons to avoid MSG but gluten is not one of them.” Her article on Open Original Shared Link explains how MSG is made from “sugar cane, beet sugar, corn starch and tapioca starch”. Some people do have an issue with MSG, but it is celiac safe.

Buckwheat

Despite the name that could freak out any gluten sensitive person, buckwheat is safe to eat — as long as you’re buying pure buckwheat.

According to Open Original Shared Link, “Buckwheat: Gluten free: Yes. Vegetarian: Yes. Comments: Despite its name, this is a member of the asparagus family, NOT the wheat family. It is gluten free, but should be checked since it’s often sold as a blend of buckwheat and wheat.”

Artificial Flavorings

I shied away from this one for a long time. Open Original Shared Link was again, very helpful in answering this question:

“Artificial Flavor: Gluten free: Yes. Vegetarian: Yes. Comment: The FDA states that artificial flavorings may not be derived from meat – fish – poultry – eggs – dairy products -fermentation products – fruits – vegetables – edible yeasts – herbs or plant material”

In summary, it is possible there are certain ingredients on this list that don’t agree with you personally. But from the research listed here, for gluten-free individuals, these are safe ingredients.

Six years may seem like forever away, but before I know it, it will be here.  And what will we have taught her?

Top 10 Tips to Empower a Gluten Free Child

These are in no particular order– some may be big picture, some may be very specific, but I hope by the time “we’re done with her” she’ll be ready to face the world as a strong gluten-free woman.

1. Speak up when something’s not right. This goes for many things in life actually, but when it comes to celiac disease, not speaking up could make you sick.  So far, this has been a challenge, Emma isn’t even correcting her teachers who are mispronouncing her last name (it’s Lezh-AY, not LEG-ger, LEE-ger, or LEDG-er).  But we continue to work on it.

2. Know your ingredients. This goes for gluten free and gluteny ingredients.  She needs to be able to look at a label and based on that, decide of she can have it.  She did this for the first time with a “Fudgesicley” ice cream treat on Tuesday– with success.  She’s 12, so I am happy to see signs of her taking control.

3. Don’t let another adult try and tell you differently. I find even adults my age, younger and older try to explain gluten free to me  and they sell it like they have experience, when in actuality, they only know a small amount or nothing at all. These could be sales people, friends’ parents, or even a restaurant server. Don’t let these people steer you away from what you know.  If in doubt, don’t eat it.

4. Learn how to tactfully turn people down when they offer food. You can go with the truth, “I can’t eat it if it’s not gluten free” (this can be turned into an educational opportunity).  Or perhaps a white lie, “I already ate, thanks for offering”.

5. Learn how to manage that dreaded pizza party. How many times in high school or college did YOU order pizza after a basketball game or on a Friday night with a group of friends?  Exactly. It’s a whole new challenge for gluten-free kids– one we haven’t had to deal with yet.

Sure, Emma’s gone to birthday parties where there is pizza, but when you’re younger, I (still) call the mom, find out what they’re eating, I bring something for Emma that she likes better than pizza and we’re all good.  But when she’s 17 or 21 and everyone’s going out for pizza, she will have to make the decision to speak up (see #1) or just let it go and not eat or even worse, eat the gluteny pizza and get sick?   If she speaks up, what does she say?  “I can’t eat there, let’s go to another place with gluten free pizza”?  Or does she say, “Let’s just go to my house and find something there”?  Since that is one we still have to conquer…feel free to leave comments/tips below with your suggestions on what you or your child has done.

6. Be grateful to people who try to accommodate your gluten-free needs. There are times where people will go out and buy gluten-free food for you or even try making something.  How do you respond?  We’ve been working on this for a few years with Emma.  If you deem it safe, eat it.  I don’t care if it’s something you wouldn’t normally eat– try it and be very verbal in your thank yous.   It takes a lot for people to accommodate gluten-free diets.  If you deem it unsafe, then that’s tricky.  Be grateful that they tried and tell them thank you.  But find a way not to eat it.  If you can explain to the host why you can’t eat it (without insulting them of course), that is the best way to go.

7. Plan and work through a weekend (or weeklong) trip with a friend’s family. Kids get invited to go to cabins, vacation homes, weekend trips with their friend’s families all of the time.  So how will the gluten free child handle organizing it with the friend’s family?  Well that can be tough.  Emma already has some friends whose parents have learned how to feed her.  Some always have certain treats on hand that they know Emma can have.  Which is awesome!  Others may not know much about gluten-free diets, cross contamination and how sick she can get.

I think the best way here (if I or my husband isn’t getting involved), is to talk with your friend about your concerns and then two of you go and talk to the parents together about accommodating the gluten-free diet (see what they’re bringing, volunteer to bring supplements you can eat, find out if there will be any dining out).  If the parents you talk to aren’t getting it….that’s when I would hope the child (in our case, Emma) would choose not to go.

8. Learn how to shop with gluten-free smarts. I am only in the early stages of this Emma.  It is cheaper and healthier to choose fruits, vegetables, and fresh meats at the grocery store..they’re naturally gluten-free!  But what about those breads and fun gluten-free treats like cookies and cake?  Well it’s least expensive to buy the ingredients and make it.  Plus you have control over the ingredients — you can make it healthier and better tasting with some great whole grain gluten free flours that are available.  If that’s not possible, buying several items at one time (ie through Amazon or other online retailers) is a good way to save money  on gluten-free foods.

9. Get COOKING! My daughter doesn’t have an interest here, plus I am a control freak.  So this is a challenge for me.  But she MUST learn how to cook for herself.  Buying those processed foods are so bad for all of us.  This needs to be a priority.

10. Have Fun; Enjoy Being Healthy! We know it is tough managing a diet at the age of 12 or 17 or even 23!  Especially when you see all your friends eating whatever they want.  My suggestions to my daughter would be: always have a stash of your favorite gluten free foods (hers would be popcorn and cereal),  learn ways to make your cooking taste like the best thing ever, and …uh…don’t kiss a boy who just ate gluten…   Just had to add that in there…..

Good luck in preparing your celiac child for life.  If you have some real-life examples we can learn from please comment below.

During this month I plan to do occasional postings on how we can give back to the gluten free community. This post is looking at food banks.

We all are likely VERY possessive of our gluten free food– it’s so expensive why would we just GIVE it to someone? I’ll be honest, that is one of my initial reactions, but it turns out in this bad economy there is a need for gluten-free food at your local food bank.

Needing Gluten Free Food at the Food Bank

Last week I set out to learn more about the need in my own community in Minnesota. I talked with Lisa Aune of Open Original Shared Link and she said,

“We do occasionally receive requests from some of our food shelf partners about the availability of gluten free food for clients of theirs.” Can you imagine being caught in a place where you need to use the food shelf and you can’t even find food options that you can eat?

The gluten-free need has been noticed elsewhere too. In Massachusetts Open Original Shared Link is a food shelf specifically for gluten free needs. You can find out how to donate or receive food at this helpful website.

Back in 2009 in Loveland, Colorado, they opened the country’s first gluten free food bank at the Open Original Shared Link Organizer Dee Valdez of Open Original Shared Link told Tricia Thompson of Open Original Shared Link what prompted her to take action.

“I remember talking to a mother who had a sick 7 year old who had Celiac Disease. The exasperated mom said she had to choose between feeding her whole family or just feeding her sick daughter the very expensive gluten free food she could find. The distraught mother said, referring to her celiac daughter, “She’s just going to have to live with diarrhea.” — Dee Valdez, Gluten Free Food Bank Organizer and Gluten Free Advocate. Interview on Open Original Shared Link

That really is a heartbreaking story, but it lead to fabulous work by Valdez. She also played a role in the new Gluten Free Food Pantry for low-income celiacs in Pittsburgh. The Open Original Shared Link profiled the food bank opening on its website recently. It just opened this spring.

How Can You Get Active?

So what if there is nothing like any of the aforementioned food banks in your area? Teri Gruss had some ideas in herOpen Original Shared Link article. She recommends talking to your local food shelf and asking them to put a call out for gluten-free donations. But you could also organize a food drive in your community or with your support group.

Back in Minnesota with my contact at Second Harvest Heartland, she supported the idea of donating gluten-free food,

“…I would suggest that you ask your readers to make those donations to their local food shelf. That way they are keeping the donations in their own community, and I’m sure the food shelves would be thrilled to get it.” Lisa Aune of Second Harvest Heartland

Nadine Grzeskowiak, RN CEN of Open Original Shared Link had a great suggestion, to donate gluten free food to the Stamp Out Hunger food drive that happens on May 14th. She says, “…put non-perishable GLUTEN FREE food in a bag in your mailbox and your local mail carrier will pick it up and take it to the local food banks.”

I will be donating gluten free food to my area food bank soon and I will let you know how it goes!

This post is for the people who want to cook for celiacs and the celiacs who want to drop them a casual hint

I have complied a list of things for these well-meaning family and friends to consider when offering to cook gluten-free for a person who has celiac disease or gluten sensitivity.

1. If you don’t understand it, please don’t do it.  We are okay with it!

It took many of us months and years to understand the gluten-free diet, cooking strategies and ways to prevent cross contamination before we really felt comfortable with it.  We don’t expect anyone to be an expert in a day.  And as a result that makes us fearful that any gluten-free food you make will actually contain gluten.  This is something some folks will never say to you for fear of being impolite.

Gluten-free means no wheat, barley, rye, oats (that aren’t guaranteed gluten free –hint if the ingredient label only says “oats” or “oat flour’ — it’s not guaranteed gluten free), spelt, durum, brown flour, malt, and Open Original Shared Link as reported by the Open Original Shared Link Corn, potatoes and rice are okay (unless the person is particularly sensitive to that as well).

2. If it’s baked and found in a mainstream grocery store, it’s probably not gluten-free

Yes, our grocery stores have come a long way when it comes to carrying gluten-free products.  But the only actual grocery store chain that is baking its own gluten-free bread is Whole Foods.  Any other grocery store is bringing in gluten-free bread or baked goods.

IF they have gluten-free bread, you usually will find it in the health food section freezer –not the bakery and not the bread section.  Pita bread, English Muffins, pizza crust, Italian bread, baguettes, bagels, cakes, pies (crusts have gluten), cupcakes all have gluten.  Bottom line:  unless you’re going to a specialty gluten-free bakery, you will likely not find any fresh-baked gluten-free goods at a mainstream grocery store.  And if you ask bakery people about it you’ll likely get a confused look or a quick no that they don’t have that available.

3.  How do you know your ingredients and utensils in your home aren’t already cross-contaminated with gluten?

Please honestly think about your cooking practices when I pose these questions:  Do you regularly double dip when cooking or baking?  In other words, do you use the measuring cup in your all-purpose flour and then just dip it  into the sugar?  If you’re double dipping, the sugar is contaminated  and no longer gluten free.  You can say the same for Crisco, butter, peanut butter, mayonnaise and anything you’re reaching in and scooping out. You may want to make divinity (which is inherently gluten free — eggs, sugar and corn syrup are the main ingredients I believe), but if your sugar is cross contaminated — a gluten-free person will get sick (or have damage in their gut) if they eat it.

What about while you’re cooking?  Do you use one utensil to stir up the gluteny turkey stuffing and then use the same spoon to scoop the sweet potatoes?

Your wooden or plastic cutting boards and your colanders are also off limits to people who eat gluten free– they harbor gluten in the nooks and crannies, that even when cleaned in the dishwasher, they aren’t “clean” for us.

4. I just won’t make stuffing and I’ll get an ice cream cake!

Whoa, you’re still going to have to look at your ingredients for cross contamination.  Plus you’re going to have to check to make sure you turkey or ham is gluten free (they can be injected with broths that contain gluten), and gravy is an issue.  Most premade gravy has gluten and anyone who makes it from home usually uses their flour as a thickener.  Corn starch is a viable option to make gluten-free gravy with turkey drippings, but just a forewarning — it’s clear and gelatinous– basically tastes fine, looks funky.

And if you’re doing an ice cream cake, you better make sure it’s gluten free.  Dairy Queen’s ice cream cake has crumbles in the middle which contain gluten. Have those removed and double check the other fudgy stuff in the center to make sure it’s gluten free and you’re set. Other places may have cookies or something inside their ice cream cakes too.

5. Let’s barbecue some ribs!

Again you must check the gluten contamination factor of your grill.  Do you put gluten on there?  In other words, do you put hamburger on there that has bread crumbs in it or grill your hamburger buns, or put steak on with a gluteny marinade?  If you don’t know– the only way to use the grill in this case is to put the gluten-free item on aluminum foil.  But also look for a gluten-free barbecue sauce.  We use Sweet Baby Ray’s.  Please keep in mind not all BBQ sauces are gluten-free.

6. Don’t assume

Read labels. Example:  Tostitos are gluten free— the label mostly talks about corn, oil and salt, but if you grab the one kind of Tostitos made form flour tortillas– that’s a problem.  Double check the label.  That one will say wheat in it.

Potatoes aren’t always just potatoes.  You’d think they should be, but if you’re getting something out of the frozen section, check ingredients!  Wheat will be listed if it’s in there — but gluten is NOT required to be put on a label if it is in a product.   Some frozen potatoes are just that, potatoes, go for the simple ones and stay away from the fancy flavored stuff.

Rice Krispies cereal seems simple enough, but in actuality it has malt. Gluten-free folks cannot eat this.

So what can you have around the house for a gathering?

Wine, coffee, Blue Diamond Nut Thins, cheese, or veggies with Wishbone Ranch dressing as the dip. Check out Trader Joe’s for some goodies:  They have a great list Open Original Shared Link which includes some sweets too!

None of us actually wants to think that our cooking would make someone sick.  But it is possible in this case — even to the cooks with the best of intentions.  Please be open to talking with your gluten-free family member or friend to see what they can do to help you make this as great experience as possible.

This list posted on my website has been about 5 months in the making. I actually started drafting this post with a different title and all back before the first pitch of the season, but when I saw the Open Original Shared Link on the Twins website, I had so many questions that it has taken this long to get most of my questions answered.

If you go to the Twins website, you’ll find this page with gluten-free and vegetarian food items listed. It is a very healthy list –with everything from fresh fruit to shrimp skewers and turkey legs. Great! It’s fantastic I am so glad there is something like this out there. But I had some questions. What about the junk? What about the fun? What about kid food? I sent an email off to Pia McDonough, Operations Manager of Delaware North Companies, the company that runs the concessions. I wrote in my email, that I was inquiring about

“kid-friendlier items — which are pretty important to parents trying to feed their kid gluten-free food — Mom and Dad probably like Shrimp Skewers but my 11-year-old celiac child would skip it.”

Here are my questions– with the answers:

Additional Gluten-Free Foods at Target Field

• Are the nacho chips and cheese sauce gluten-free? Yes. The chips are Old Dutch and the cheese sauce is gluten free as well. It is made by Gehls.
• Cracker Jacks are gluten-free. They should be on your list. And I gave her theOpen Original Shared Link.
• Would it be possible to find one stand that can serve gluten-free french fries? A stand that doesn’t deep fry anything except for plain old fries? The answer on that one — NO. So the fries are NOT GLUTEN FREE. Hey — I gave it a shot!!
• What about your ice cream novelties, have those been investigated for their gluten-free status? A lot of ice cream is gluten-free if it doesn’t have cookies, malt or a cone. Confirmed the Push Up Fruit Bars and Premium Bars (vanilla ice cream on the inside, chocolate on the outside) are indeed gluten free. — DO NOT get any novelties on a cone or cookie sandwich.
• Kettle chips? Yes — they are gluten-free. Brand is Rachel’s
• North Shore Creamery, is that a company I should go through separately to ask about ice cream? Answer from McDonough: “The North shore creamery is a branded name for our ice cream stands. They sell Land O Lakes soft serve which is gluten free.”
• What about regular popcorn and cotton candy? (My popcorn-eater wouldn’t want Angie’s Kettle Corn). These two things she is still getting back to me on.

McDonough also confirmed the hot dogs are gluten-free without the bun, but THE HAMBURGER PATTIES ARE NOT GLUTEN FREE! I write that in caps because I often think that is so basic it should be gluten free, but McDonough says the ingredient label says “less than 2% wheat flour”.

As soon as I hear more about the popcorn and cotton candy I will update this post. I really hope I hear soon.

The Gluten-Free Baseball Trend

The Gluten-Free food accommodations at ballparks is growing. This spring the Open Original Shared Link talked about the need to accommodate gluten-free diets at the Nation’s ballparks. The high-profile gluten-free menus at Coors Field in Denver, Citi Field (home of the NY Mets), are done by the Aramark food service company. You can see more about this company’s effort to make gluten free accommodations Open Original Shared Link. Aramark even includes gluten-free buns with their gf hot dogs! Now that’s nice.

Open Original Shared Link doesn’t appear to tout its gluten-free concessions as much. I’ve had to go to each team’s individual website to learn more. And there wasn’t much out there. While I didn’t ask McDonough about anything other than Target Field, I did do a separate email to Delaware North back in the spring and never heard back about the company’s gluten-free reach in other ballparks.

The gluten-free trend at ballparks and other major event venues is fantastic. My only suggestion– When you’re researching and publishing your list, look more closely at things like popcorn, Cracker Jacks and other treats. They may be easier than you think to confirm as gluten-free.

With the end of the decade now just days away, I got to wondering what were some of the more significant moments that had an impact on celiac disease. While I certainly have my own thoughts on this, I felt like this needed responses from the greater celiac community.

And you delivered! Starting on December 16th, I opened the unscientific survey asking “What do you think has had the greatest impact on the celiac community in the last ten years?” 94 people responded with their top three answers to my survey which closed on December 27th. Your answers and comments are very interesting. So here are two of the top three vote-getters…

3rd choice for top impact on the celiac community in the last decade: More selection at restaurants

61 percent of respondents chose dining out as their third choice in this survey. It is true. This boom has made eating out with celiac disease so much easier! Really with the exception of Outback Steakhouse’s nationwide gluten-free menu (it’s had the gluten-free menu for as long as I can remember), most other restaurants didn’t even venture into the gluten-free options until about 2006.

Then with the advent of the websites like Open Original Shared Link, Open Original Shared Link Open Original Shared Link and Open Original Shared Link we all are now able to go on long-distance trips (or even just a local date-night) and have a starting point with which to find a gluten-free meal at a restaurant. One respondent commented, “Awareness at restaurants and with chefs has grown quite a bit. Gluten-free menus are a great way to start a conversation at the table and show others that it can be easy to fulfill a ‘special needs’ diet.” A parent reflected on the change in the last ten years…including finding a place “where we can go to eat out and eat safely.”

Admittedly, there is work to be done. While some restaurants really have a solid understanding of the diet and cross contamination issues, others do not. But in an interview I did with Sheila Weiss the Open Original Shared Link consultant on food and nutrition policy earlier this year, she mentioned the interest restaurateurs and chefs have in pleasing patrons with special requests. “We strongly encourage customers to explain their food intolerances to their server so that the appropriate staff member can be notified in order to accommodate the special requests. Restaurants are happy to work with the customer to find menu items that work for a gluten-intolerant guest,” Weiss said. “The lines of communication are very important so that a restaurant can ensure a safe meal for their food-intolerant guest from start to finish. This personalized attention is of utmost importance to all parties involved.”

2nd choice for top impact on the celiac community in the last decade:
A tie: celebrities with ties to celiac and blogging/social networking

Respondents chose these two categories for their #2 selection 50% of the time in the survey.

Celebrities with ties to celiac disease started with Open Original Shared Link who was an NFL quarterback when his daughter Danielle was diagnosed with celiac disease. He and his wife Open Original Shared Link have been very active in raising awareness over the last decade. Most recently the additions of Open Original Shared Link(CNN anchor) and Open Original Shared Link (The View co-host and author of The G-Free Diet) have really added to the awareness. In some cases it seems too bad that it takes a public figure to get people interested in a cause, but it has helped here. I am thankful that they’ve used their celebrity to bring awareness to this cause.

Blogging and social networking about celiac disease seems to be the current equivalent to a support group. It is so easy to throw a question on Twitter and get several responses within a few hours (or even minutes). I believe bloggers have made people with this disease not feel so isolated not just because there are many out there, but many of the stories they are telling are very relatable.

One respondent acknowledged the importance of bloggers and social networking, but that person worries that most of the impact has been negative. “[Blogs] allow all the kooks and nutcases free rein to promulgate their belief systems as if they were backed by solid scientific research.” This is an area in which readers need to be careful. I hope that when people start searching for celiac-related blogs, they can eventually deduce which ones are right for them. Some blogs only focus on gluten-free cooking, others are more about the celiac lifestyle. This blog, Open Original Shared Link, is about education, research and lifestyle. Either way there must be hundreds of us out there…I would like to think that we are all trying to achieve one goal – raising awareness as accurately and honestly as we can.

The top spot will be posted on Tuesday!

In a Open Original Shared Link Monday, the Open Original Shared Link company says it will begin labeling gluten-free products appropriately beginning in January of 2010! Wow! Those Sunday 2:00 a.m. trips to my local 24-hour drug or grocery store looking for a pain reliever for my feverish child may not be so bad. Now I’ll actually be able to find out a medicine’s gluten-free status — right there in aisle 9! “Now, consumers will be able to identify whether a Perrigo-supplied product is “gluten-free” simply by reading the product label,” the Perrigo news release said.

Perrigo is the “world’s largest manufacturer of OTC [over-the-counter] pharmaceutical products for the store brand market.” It certainly is showing it’s progressive side by not only adding the gluten-free label, but also putting together a plan to ensure gluten-free claim on the medicines is true; which is a bit reassuring:

“To support the gluten-free labeling initiative, Perrigo has instituted a gluten-free assurance program. Perrigo’s program is based on the acceptable thresholds of gluten (less than 20 parts per million) identified by the FDA for the food industry. It is comprised of a gluten testing methodology for raw materials and products, as well as ongoing quality assurance for ingredient and formula changes.”

The Perrigo website doesn’t list which companies it prepares store-brand OTC medicines for, but it did Open Original Shared Link as big name examples on one of the company’s web pages. So you’ll want to keep your eyes peeled at your local store.

But in the meantime, this appears to be Open Original Shared Link they create. I can’t wait to check them out!

“I have Celiac Disease and even though I know it’s killing me I still eat and use products containing wheat and flour…I don’t know how to stop doing this to myself and apparently death isn’t good enough reason for me to quit : / I have also recently been diagnosed with cancer and had surgery to remove it and my appendix where it was found.” — Anonymous on Open Original Shared Link

The skeptical news person in me questions how realistic the preceding “confession” is, but whether it’s real or not, I believe the idea of non-adherence to the gluten-free diet is a real issue and deserves some space on this blog. So allow me to use it as a launching point for a serious discussion.

Sticking and not-sticking with the gluten-free diet

Just last month on Celiac.com Open Original Shared Link which said on occasion she just couldn’t “stop binging on gluten”. Then the outcry of support came from readers: concerns about depression, nutritional deficiencies, and maybe an eating disorder. The woman said she’d get help and turn things around - and that she appreciated the support.

Even knowing that infertility, osteoporosis, cancer and more can all be a result of untreated celiac disease, what causes a celiac to turn away from the very diet that could prevent all of these ailments? Is it just because someone told them they can’t have it -now they want it more? Is it because they crave certain favorites so much they just feel they cannot deny themselves? Is it pressure to fit in, in our processed-food culture?

One survey conducted two years ago and printed in Open Original Shared Link showed that the gluten-free diet is is followed in only 50-75% of patients. The reasons: “unclear food labeling, low levels of knowledge about the diet, reliance on processed foods and the cost and availability of gluten-free foods.”

“Only 2 factors were associated with worse adherence, concern that cost made a gluten-free diet more difficult to follow and the admission that changes in mood and stress levels affected the ability to adequately follow a gluten-free diet.” –Dr. Daniel Leffler, MD Beth Israel Deaconess Medical Center, Boston, MA

Increasing Adherence to Gluten-free Diet

So how do you fix this problem? One thing to do, according to the aforementioned research, is to join a support group. This helps increase your knowledge base about celiac and the gluten-free diet, which will help you sort through any unclear labeling and reliance on processed foods -which were mentioned as problems earlier. I know it really helped me shortly after Emma’s diagnosis.

More recently a few studies have other, what could be considered more-clinical, suggestions. One study profiled on my site last month recommended doctors begin using a 7 question survey to determine gluten adherence, and then work with the patient to increase adherence.

Another study I found on the Open Original Shared Link website recommended trained nutritionist evaluations as the best to help people adhere to the gluten free diet.

With any luck, the person who posted the “confession” will hopefully get some help and begin to follow the diet. And we all wish him or her the best as they go through the process of an early cancer diagnosis.

If you have celiac disease and are struggling with staying on the diet, I highly recommend getting involved in a support group or a celiac organization of some kind. Knowing you’re not alone really can help your psyche. If you think it goes deeper than that, consult your physician about other steps you can take to help you help yourself and get better!

I introduced you to Ida in one of my first posts back in November. I explained how we were blessed with her presence for the school year and about some of the challenges we faced, including with school lunches. As the year has gone on, you’ve heard about prom, a pizza party for her birthday, planning a trip to Hawaii, and Ida’s first Thanksgiving dinner (never had pie before).

But besides that I do feel like I’ve learned more about managing a teenager with celiac disease. While this may be old hat for some veterans, I thought I would let you know what I found:

1. Save your pennies for the teen years! The older they are the more they eat! Even my trim Norwegian teen went through a lot of gluten-free food! Way more than what I’m used to.
2. They don’t want to be a bother when they’re at a friend’s house. Ida humored me when I’d ask her what she’s eating at her friend’s house and I would send food along or get more information from a parent. I’m sure when it’s Emma’s turn I’ll get an eye roll or a sing-songy “Mooom!”
3. Try to prep them for restaurants. Teach them to do research on line. Empower them to be strong enough to recommend a gluten-free friendly place to their friends and then hope and pray they follow through.
4. Teach them kitchen etiquette that will keep their food gluten-free; AKA don’t put your gluten-free bread on the counter next to the toaster that’s designated for regular bread (and bread crumbs)! A few paper towels will keep your food prep nice and gluten-free!

What has she learned? I would say her overall take is the gluten-free world in America is not even close to being the same as in Norway.

• She can get McDonald's cheeseburgers on a gluten-free bun in Norway, but not in the USA. Ida says thee gluten-free buns are “really good”. Ahem..Isn’t McDonald’s an American company? Please don’t tell me someone at the headquarters in Oak Brook, Illinois is ordering gluten-free buns for Europe and not here!
• All pizza places have gluten-free options in Norway but not here. She says they have to because so many people in Norway have celiac.
• And other just-because-it’s-gluten-free-in-Norway-doesn’t-mean-it-is-here cases. Case in point: Airheads Extreme candy. Regular Airheads appear to be gluten-free as of this post. But one day we were talking in the kitchen and she was eating Airheads Extreme Rolls. Emma had never even seen these before let alone tried them. She said “Are those gluten-free?” Ida replied, “I think so, I can eat them in Norway.” But sure enough on the back in bold letters - Wheat flour.

I am sure one of the things she’s looking forward to in going back is enjoying the food that is known and she hasn’t had in a year. However, I’ve had the pleasure to make her first Juicy Lucys, pies, Thanksgiving dinner, pasta with cream sauce, baked beans, just to name a few. She was a good sport and while she didn’t love the cream sauce, everything else she either really liked or tolerated. Hopefully she’ll bring some of these things she’s learned home with her.

In the meantime, I’ve had a look into what my future holds for my daughter with celiac. I am feeling at least a bit more prepared than a year ago at this time.

1. Before diagnosis, wondering why my daughter, celebrating her first birthday, refused to eat cake and threw a tantrum.
2. Looking at my 1-year-old daughter with skinny legs, bloated tummy, and crabby disposition and wondering - is this the way the next 17 years will be.
3. Questioning doctors about why my daughter throws up so much and has such a big belly - I was treated like I was an overprotective mom who knew nothing.
4. Cleaning up vomit on the carpet, on clothes, in the kitchen, in bed, on the wall, on stuffed animals, etc.
5. Leaving work early and in tears because something was wrong with my daughter and no one knew what it was.
6. Feeling the best relief ever when a gastroenterologist confirmed our doctor’s eventual diagnosis of celiac disase - just by looking at her. Solidifying the fact that we weren’t crazy!
7. Getting up at 4:30 a.m. to fix 16-month-old Emma breakfast at the latest acceptable moment because she couldn’t eat for 8 hours before her endoscopy and biopsy.
8. My eyes welling up in tears as the anesthesiologist put the mask on my daughter to put her “under” for the biopsy. She was fighting and crying and then her whole body went limp.
9. Panicking at our local grocery store, as I looked for gluten-free food for the first time. I only came home with eggs, Cheetos and Corn Pops (which now are no longer gluten-free).
10. Being so happy that my husband had gotten me a bread maker for Christmas the year before; a gift my male co-workers thought was so dumb, ended up being such a blessing so I could make gluten-free bread.
11. Feeling the joy after only 7 days on the gluten-free diet, Emma was a completely different child. Happy and no longer sickly.
12. Being frustrated because I had to convince many friends and family that celiac is a lifetime disease and her diet had to be taken seriously.
13. Grieving the loss of “normalcy”.
14. Being relieved after finding other parents who had recently started a celiac support group. We all came together and eventually started planning our annual fundraiser: Making Tracks for Celiacs.

1. Being nervous about sending Emma to Kindergarten, but pleased we found one hot lunch she could take: Tacos!
2. Celebrating victory when she ate tacos for the first time at school and they were “awesome!”
3. Feeling bad when I had to tell her that tacos were no longer available on the menu.
4. Making 3+ years of daily cold lunches for school.
5. Feeling victorious when our school found gluten-free food options for Emma, which led to a gluten-free menu!
6. Feeling strong enough as a mom of a celiac child, that we took in Ida, an exchange student with celiac; I started this blog; and I am teaching an occasional gluten-free class.
   

25 Random Things about Celiac Disease

1. Affects 1 in 133 Americans** (approximately 3 million)- 97% are undiagnosed*
2. It takes an average of 4 years for a person with symptoms to get a celiac diagnosis*
3. Gluten is a protein most-commonly found in wheat, barley, rye and some oats
4. There is no medicinal cure for celiac disease; a gluten-free diet is the only cure.
5. Tons of money will be wasted trying gluten-free food you or the celiac in your family don’t like -- but you'll also find food you do like
6. Sometimes dental teeth cleaning/polishing paste has gluten in it!
7. Taking a hamburger patty off a regular bun does not “decontaminate” the meat of gluten
8. There is no answer to “How sensitive is she?” when it comes to gluten reactions. It’s all bad.
9. Approximately 36,600 women may never learn that celiac disease is the cause of their infertility*
10. You can be constipated and have diarrhea at the same time
11. Gluten-free baking takes a lot of trial and error
12. Rochester, MN School District has a gluten-free lunch menu that serves 20+ students each day
13. A toaster used for regular bread will contaminate gluten-free bread
14. Just because something is labeled “wheat-free” does not guarantee it is “gluten-free”
15. Celiacs must always have snacks with them, because gluten-free food can be hard to find
16. Oil that fries breaded items, will contaminate gluten-free foods fried in the same oil
17. Gluten-free foods cost at least 3 times more than its gluten-filled counterpart***
18. In Europe, the government subsidizes the cost of gluten-free food***
19. Gluten is toxic to a celiac’s gut, wiping out the villi or “fingers” in the small intestine which grabs nutrients from our food. Without the villi celiacs are malnourished causing many health problems
20. Osteoporosis, migraines, sinus issues, cancer, liver disease are all health problems that can happen because of undiagnosed celiac disease**
21. Eating gluten-free doesn’t have to be difficult. Basic diet: meat, potatoes, vegetables and fruit!
22. Tons of people “Tweet” about celiac disease and the gluten-free diet on Twitter
23. Most gluten-free baked goods must be frozen or they will go bad in 2-3 days on the counter
24. Going on a gluten-free diet before being tested for celiac disease will likely cause a negative outcome on either the blood test or the biopsy of the small intestine.
25. Most mainstream rice and corn cereals aren’t gluten-free because manufacturers add barley malt to them

*Source: Open Original Shared Link

**Source: Open Original Shared Link

***Source: Open Original Shared Link

But can it help us get gluten-free information? Well, first off, it can’t if we cannot find people to follow, which is one thing I struggle with on Twitter. You can’t search topics or names to find people you know or groups like Gluten Free Living unless you know its exact name. So I’m here to help…Here are some good gluten-free Twitter feeds that are worth following. When I reference them with regards to the feed, I will type them exactly the way they should be typed on Twitter.

Celiac-Related Twitter Feeds

Recently, I began “Following” GlutenSecret, CeliacHandbook, GFLiving, CSACeliacs and many other people with gluten free or celiac connections. CeliacHandbook I have found to be one of the most interactive gluten-free organizations. The CeliacHandbook Twitter feed poses cool gluten-free questions and does quick mentions of products it has heard about. Open Original Shared Link has its own website as well (linked down to the right) which includes restaurant information, celiac stories, lists of events and more. I am connected with them on LinkedIn as well and the members of that group are very helpful and smart in the way they handle their celiac disease and diet.

Open Original Shared Link (Twitter feed by the magazine Gluten Free Living) is very new and in its short time on Twitter doing a good job of spreading news and directing people to its site. In fact the most recent feed I saw was that a Baltimore restaurant is carrying gluten free beer and dessert. Better go check out GFLiving’ss Twitter feed if you live there! I am sure this feed will expand with the company’s comfort level.

Open Original Shared Link is also new to the Twitter feed but so far hasn’t been majorly aggressive in its efforts to get out information. I would think it would be more aggressive considering the lengthy history of the organization. I will cut them some slack. They did respond to one of my blogs in the last week. So I was happy about that.

Open Original Shared Link looks like it has potential. I just started being “followed” by it today. It’s latest feed promises that there is “so much more to come”. Hmm makes you wonder what that will be — a GlutenSecret maybe?

And of course there’s me! Open Original Shared Link (No for some reason I didn’t sign on as thesavvyceliac. How dumb?) Whenever I have a new post on my blog, I always post it to my Twitter feed! So if you like thesavvyceliac.com, feel free to check out AmyLeger on Twitter.

Keep in mind, I couldn’t list all of my Twitter “followers” in this post, so if you want to see more, just check my feed. This also doesn’t mean other gluten-free or celiac-related Twitter feeds are bad - it likely means I just haven’t found you yet! Which brings this post right back to where we began - why is it so difficult to find people on Twitter?

As for Ida at school, she loved going to high school football games last fall and checked out a high school hockey game for the first time last night. Her time here has brought a lot of new experiences. She celebrated Halloween, Thanksgiving, Christmas and New Years here. But she’s also traveled. Ida has seen Mt. Rushmore, Lake Superior, the Rocky Mountains, Las Vegas and the Hoover Dam. Next she’s going to Hawaii in February. She is definitely fitting a lot in – in a very short amount of time.

Host Family needed for celiac student

But now another young lady with celiac disease hopes to have a similar experience. I have just been informed about a student who is hoping to come here for the 2009-2010 school year.

While I cannot give out a ton of information about her in this forum, I wanted to do what I could to help out the Youth for Understanding organization by reaching out to the celiac community with the goal of finding a host family for her.

The prospective exchange student’s name is Emma and she is a teenager who has celiac disease. I can tell you that she loves children. So if you have younger kids, like I do, you should still feel free to express an interest. For more information, you can email Betsy at Open Original Shared Link. She helps place students through the YFU program.

Hosting a celiac exchange student

As for hosting a teenager with celiac disease, I’ve learned many things from Ida – like my cooking doesn’t entirely stink! My soon-to-be 10-year-old, Emma, doesn’t like a lot of things, including lasagna, spaghetti sauce, and bread that isn’t baked by Mom. But Ida really goes with the flow on these things. I have been hoping this would rub off on Emma, but so far, she hasn’t been too adventurous.

If you choose to become a host family, another thing you’ll learn about -- different words from their country. For example, when we were in Pahrump (about 40 minutes from Las Vegas) last week, one of my daughters said the word – Pahrump. Ida started laughing – uncontrollably. We asked her what was so funny? She said Pahrump sounds exactly like the Norwegian word for fart!! The Norwegian version is spelled promp, but has nearly the same pronunciation as Pahrump. So the girls were saying it in the car all evening back to the house. My in-laws who live there got a real kick out of it too when we told them about it. That will be a memory that will no doubt stick with us forever!

If you would like to see where an experience like this will take you, send Betsy an email. It wouldn’t surprise me if this young lady has been warned like Ida was – that people with food allergies and other health issues can be very difficult to place in a home. That ended up not really being the case with Ida, let’s hope it’s not the case with Emma the exchange student, as well. Good luck!

But now, technology is making it a lot easier for us to navigate the aisles with more confidence and a lot less paper. I recently received a notification online that talked about an application for the iPhone that helps you access gluten-free ingredient lists.The software developer, Clan Thompson, also makes the software for Smartphones and pocket PCs. It is great for companies to seize on the need for easy access to gluten-free information and create software like this.

But dare I utter the words…Is the application worth it? You may be saying “how could it not be worth it? ”Well I’m personally not quite there yet. It’s not that I’m afraid of technology–although my husband might say I am. And it’s also not because I don’t have an iPhone or a Smartphone. It’s because I don’t understand why you need an application for something you can just find online using your cell phone with internet access.

I set out to get some answers. I checked in with my iPhone connections: my sister-in-law and my celiac brother. I asked them to check out the “app” –as the tech-savvy cal it– but I also gave one a link to a Open Original Shared Link and another link to a forum that has an Open Original Shared Link. How do they rate?

First thing they both said: “the application costs $24.99” and my sister-in-law Dani Kassner added “…which is a little spendy”. Clan Thompson developed the software, and says on its website it “…will provide new versions quarterly, but you must purchase them individually. ”From what I gather, you could be paying as much as $99.96/year for updated gluten-free lists on the iPhone.

Software for a SmartPhone is $29.95, but at least double that for a year subscription which includes updated information. No matter which one you buy, the application for the “Celiac Food Smartlist” says it “…makes it easy to find gluten information on over 18,669 products.” It is a good start. My brother, Dave Cook, who has celiac didn’t buy the application, but says in general he finds iPhone “apps” user-friendly.“If this app can put the gluten-free database at your finger tips, and make it easy to search, [we’ll probably] be buying it”, he said.

In comparison, what did my “guinea pigs” find when they checked out the regular web links I sent them? “The [ingredient] link…worked great for me…” my sister-in-law reported. My brother said the forum site with the product listings was “tedious” to get to, but it worked and he could read it.

Thankfully we live in a time when we can make the choice: pay extra for the “app”, or just stick with the good ol’ World Wide Web. What do you do? I would love to hear about your innovative ways of using technology to help you handle the gluten-free diet. As for me, I’m pretty old fashioned. I either look it up online before I leave the house or at a last resort, I print up a list and bring it with me to the store. I know…someone just get me a cane.

• Find an online support group to get you started. You can find one almost instantly using any search engine. In an online support group, you will always find someone available to help you with questions until you find a traditional support group.
• Get into a traditional support group. If you attend a support group in person, you will likely find it to be a more personal and rewarding experience. Building a personal network can strengthen your confidence in conquering this diet.
• Be an Innovator! If you still can’t find a group that is a good fit, Benkofske recommends starting your own, “…if you have the passion to help others while at the same time helping your own family, go for it!”