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Eric’s Story

Here’s something a little bit different for this challenge: me interviewing my own brother.  Before we launch into it, let me tell you how things work in my family: I am the clown, my sister is the diplomat, my brother is . . . the skeptic.  Now, if you’ve got even the most basic knowledge of birth order under your belt, you can guess that I just listed us all from youngest to oldest.  You can also guess that the Big Brother Skeptic does not always take too seriously what comes from the Little Sister Clown.

When I came to Eric with the theory that he would do well to eliminate gluten from his diet, he just rolled his eyes.  I know what he was thinking: “Here we go again”.  I’m sure he figured this was one more strange flight of fancy.  Like yoga, or summers lived out of tents.  (And if he thinks this is weird, let me say in return that I am totally mystified by what he and his friends do: meet up in one house with all their individual laptops, set themselves up at couches or tables, then compete video-game-style for hours straight while eating pizza and not speaking, as warlocks, or wizards, or ninjas, or… I don’t even know.)  You get the picture.  We are different, my brother and I.

We are also the same.  There’s just no getting around genetics.  Like my mother, our grandmother, and many other relatives on down the line, we struggle with health issues commonly linked to gluten.  My grandmother’s intestinal troubles, especially, have been romanticized into family lore.  A woman whose frail appearance belied her inner strength, she raised four children with ferocity, love, and a whole lot omy grandmothertomach pain.  The greatest treat in their home was an avocado: one ofhe only things my grandmother could comfortably eat.  On a good day, mom, her sister, and t brothers found enough coins on the sidewalk to run home with a market avocado in their hands.  My grandmother was also known for drinking loads of coffee.  Constantly.  All day long.  Paired with the stomach … in that really makes no sense, but with her limited food options, coffee was an available vice.  I get it.

I am, however, a little suspicious of these few things:

1) Our staunchly Italian family is fond of a gluten-rich diet.  One might describe dinner as strings of gluten, topped with sauce of gluten, mixed with balls of gluten, and a side of sliced gluten with butter on it.  They weren’t big on fresh fruits or vegetables.  I’m wondering how she ever ran into an avocado in the first place.  What I’m saying is, I don’t believe it was all food other than

avocados disrupting her system. I would bet that with some progressive information, and a foray outside of traditional Italian cuisine, she could have broadened her diet.

2) The only explanation my grandmother ever received for her digestive troubles was… bleeding ulcer.  She never underwent a stomach scope or other medical proedure for proving this as fact.  She simply described to her doctor what happened whe she ate, and he offered up the diagnosis of an ulcer.  I wasn’t there for their converstion.  I wasn’t even born yet.  But I do have trouble believing someone with an ulcer wuld have less abdominal pain when drinking copious amounts of coffee.  Peptic and beding ulcers are the most common misdiagnoses given in place of celiac disease and gluten intolerance; their symptoms can mirror each other.

3) Let’s backtrack to that word “diet” for a moment.  We know a lot more about eating disorders now than we did in 1951.  This is not to say that Anorexia and Bulimia did not exist.  They did.  Just not in the same in-your-face, People Magazine, spindly mannequins, Ally McBeal sort of way.  The “avocado and coffee for stomach pain” story? That may have flown back then – I don’t believe it would now.  Several of my more contemporary family members have struggled with eating disorders; they have all woven much more convincing tales.  I’m sure her stomach pain was real.  There’s a reason why          eating disorders are one more symptom of celiac disease and gluten intolerance: if eating food makes you feel terrible, chances are you will develop an issue with it.

I reflected a lot on my grandmother when muddling through my own debilitating health issues a couple of years ago.  Long story short: it was frustrating, it was confusing, I was given multiple misdiagnoses (including bleeding ulcer), then finally I was found to have celiac disease.  Fast forward one entire, gluten-free year later, and I was in pretty excellent health.  I wish the same could have happened for my grandmother.  I was determined to bring the same experience to my own family members; starting first with my brother.

Swaying the Skeptic ,

By the fall of our visit, Eric had been taking a combination of Zantac and Prilosec for eight years straight.  Zantac is prescribed for stomach ulcers, Prilosec for gastroesophageal reflux disease (GERD).  Both drugs come with some pretty hefty side effects – constipation, diarrhea, headache, gas, nausea, stomach pain, vomiting.  These are the most common complaints.  They typically subside over time, and then leave people like my brother with a much higher quality of life. Until stuck in the depths of my own health struggles, I’d never known how sick my brother had once been.  We’d talk on the phone, and I’d tell him whatever illness my doctor was most recently investigating: Lupus, Irritable Bowel Syndrome, Ovarian Cancer.  He would sympathize by telling me how much chronic pain he used to live in and then say, “but at least I knew what it was”.

Or did he?

Celiac disease is passed along the family line through a genetic marker.  While I am the only one in my family to have been tested for celiac disease, symptoms of that and gluten intolerance are rampant throughout our family – arthritis, eczema, insomnia, restless leg syndrome, nose bleeds, mineral deficiencies, intestinal upset, thyroid disease, adrenal fatigue, miscarriage, fertility issues, addictive behaviors, acid reflux, ulcers – we cover the spectrum.  One more strike against us: our Italian heritage.  Celiac disease is more common in Italians, and in that country all children are screened for the disease by the age of 6.  What a difference that must make: an entire upbringing unhampered by the toll taken on the body – physically and emotionally – by food.

I explained this all to my brother on the phone leading up to our visit.  I thought I made a convincing case but he would only say, “there is no way I will go off that medication.  Ever.  I can’t live without it.”  I sighed, “ok”.  And then I packed my bags and my children for the six-hour drive to Bainbridge Island.

A picture is worth a thousand words

Instead of inundating Eric with information and impassioned speeches, I should have just sent a current photo of myself.  As soon as I walked through the door of his house he said, “Wow.  You look GREAT”.  That was huge.  Compliments from a big brother – no matter how grown up everyone gets – are not easy to come by.  But this one was well deserved.  On our last visit, I was fifteen pounds heavier, exhausted, covered in rashes, vomiting on a regular basis, and experiencing other things not meant for polite conversation.  Now there I was, back to my old self: brighter skinned, lithe, and full of energy.  So much energy, in fact, that while Eric worked I tried to make sense of his bachelor pad (he was using red plastic kegger cups in place of water glasses, not even kidding) while pulling it together slightly.  I also made a nightly dinner, which was a little like participating in some Reality TV cooking contest.

My brother travels a lot for work.  He has created a groundbreaking program for improving water quality and consumption, and is constantly in the air or on the road to somewhere, consulting with state and county agencies, or speaking at universities (once at OSU, for my friend’s class, where the professor said it was “a privilege to have him”.  My brother.)  Saving the world does not leave a lot of time for tending to his own health, or even basic grocery shopping.  His cupboards reflected that.  What little food he had did not exactly go together.  It was like the ultimate Top Chef challenge: pull together a gluten-free meal from the refrigerator and pantry of a bachelor pad.  I did it…every night that week.

We had a great visit.  We ate well.  We road the ferry East, where we walked through Pike’s Place Market to munch on juicy plums and select fresh seafood.  We road the ferry West, where my daughter whispered to Eric, “I looked really hard but didn’t see any fairies on the boat”.  (Fairy Boat. Ha!) He showed her jellyfish instead.

Those are the sorts of things we talked about.  But gluten?  We talked about that not at all.  I’d given my brother all the practical facts on celiac disease before our visit, and he wasn’t swayed.  So rather than spoil our time together with confrontation and debate, I figured these two things: 1) I would never change his mind; 2) there was no way he’d stay successfully gluten-free with his hectic, travel-packed schedule.  That would take real dedication.  And belief.

Surprise, surprise

Four weeks after our visit my brother called me to say: he’d gone gluten-free!  My skeptical brother – who professed he’d be on stomach medications and a mac-n-cheese/pizza/fettuccine diet for life – had gone gluten-free quietly and all on his own.  He managed to do this even with back-to-back road and air trips for half that time.  He ate out as much as always, but at Mexican chains like Qdoba, Chipolte Mexican Grill, or Baja Fresh, where gluten free meals can easily be had through choosing nachos, tacos, or (so long as that facility uses a separate grilling station) corn tortillas.  When dining out for business, he used his judgement to pinpoint what might be gluten-free, then made sure to check with the waitstaff.  Not a big drinker to begin with, he found it easy to switch to a glass of wine instead of beer during those same dinners.

I had two questions for him: What made him decide to go gluten free, and why hadn’t he told me earlier?

Eric said it had been hard for him to buy into the theory that gluten could be a cause of sickness.  He believed wholewheat products to be healthy and wholesome, and the gluten-free movement to be a fad –  like the Atkins or Zone Diets.  The information I gave him was not convincing because, he said, anyone can look up anything on the Internet and find the facts to make their case one way or another.  It was only seeing me that convinced him otherwise.  He was astonished to see the difference in my appearance and energy level; amazed that someone could go from being tested for debilitating, potentially fatal illnesses to a full recovery just through a change in diet. He also saw that going gluten-free wasn’t as overwhelming as he thought it’d be.  I didn’t make a big deal out of our meals being gluten-free, but because I was eating with him, he knew that they were.  And he didn’t feel like he was missing a thing.  Except, of course, for stomach pain and acid reflux – which he still dealt with on a minor level even with the constant stream of Prilosec and Zantac.

As for why he hadn’t told me, well, he didn’t want to give me the opportunity say “I told you so” – not unless he got real results from going gluten-free.  And he had!  In just four weeks, Eric had managed to stop taking Prilosec and Zantac entirely.  That’s right.  No more symptoms of GERD and no supposed ulcer.  The pains, bloating, indigestion, lethargy, burning, nausea, vomiting, and headaches he’d once experienced after eating had disappeared.  He was not just committed to remaining gluten-free, he was passionate about it.  This was really a shock for me.  Of all my family members, he was the last one I expected to make a major health change.  But as he said, “it was a no-brainer”.  The four weeks of radical improvement were proof enough.  There was no reason to go back to gluten, and he expressed no feelings of loss over eliminating or swapping out certain foods.  He was now telling his friends and our family members, “it’s really so easy to go gluten-free”.

Fast Forward

That was a year and a half ago.  Things have dramatically changed for my brother since then.  With ulcers and GERD at bay, he noticed other underlying symptoms which lingered, then eased as well.  His ecxema cleared up, he began to fall asleep easily and stay that way throughout the night, became more energetic and lost twenty pounds.  He stopped using red kegger cups for water glasses.  But this has nothing to do with going-gluten free.  This has to do – you guessed it – with a woman.  Eric married his best friend of sixteen years, Miranda, and the two merged their little families into a great big one full of sons: his ten year old; her five-year-old twins and also her seven-year-old.  Oh yes, and the recent addition of a baby girl.

Clearly they have a lot to balance in combining homes, schedules, belongings, personalities and parenting styles.  With all of that, fitting enough chairs at one dinner table was accomplishment enough; filling each plate with the very same foods was not on the agenda.  While Eric’s transition to gluten-free had been a smooth one, he could not imagine imposing his dietary needs on others – especially in a time of such great change and compromise.  It just seemed . . . too much to ask.  So he quietly prepared his own gluten-free version of the same meals.  When they had spaghetti, grilled cheese, pizza, burritos, or pizza . . . so did he – but with rice, quinoa, or corn instead of wheat.

I questioned him gently on this approach.  Was it easier, really, to go through the effort of shopping for and preparing an entire second meal?  Did that make any sense when, in the end, they would all essentially be eating the same thing?  And was he concerned about the risk of cross-contamination?  Or…the high probability that his biological son and daughter would benefit from eating gluten-free as well?  His answers, in short order: yes, yes, no, and maybe.

Even the most informed gluten-free individual can have a hard time buying into the idea of cross-contamination.  Sure, they may realize you can’t just remove breadcrumbs from salad or eat the filling of a pie while avoiding the crust.  These things are visual.  But many will doubt the fact that gluten can be spread through the use of porous (plastic or wood) utensils, cutting boards, and counter tops.  Gluten is insidious.  Trace amounts will remain embedded in these items, even when washed between use. The air itself can pose a risk. Particles of flour remain in the air for up to 72 hours after having been sifted, poured, and stirred during the baking process.  No matter how careful you are to prepare your own, gluten-free meal, you can never be truly gluten-free so long as others in your home are not.

Eric discovered this for himself within the first month of sharing a kitchen and the dinner table with his newly expanded family.  His acid-reflux returned, along with some minor intestinal upset.  It was not as extreme as before and he was able to get by without medication.  Then came a couple nights of vomiting after dinner time, similar to what had caused his physician to prescribe Zantac in the first place.  Eric called me up.  He wanted to know, “could I really be getting sick just from living in a home that has gluten in it?”  Yes, yes, yes!  And just in case he wouldn’t believe me, I posed a challenge.  I invited Eric, Miranda, and their entire family to join in on our 6-week long, gluten-free trial.  Just six weeks!  Surely they could commit to that.

Dinner for Seven

Eric and Miranda went through the process of cleaning out their kitchen.  Items with gluten were discarded or donated to a food bank.  Wooden utensils and cutting boards were replaced.  Every inch of cupboard and counter space were thoroughly scrubbed.  Their shopping lists were altered: pastas, cereals, sauces, soups, and dressings all became gluten-free.  Breads were the hardest to replace.  There is no denying that most gluten-free breads have a different, less satisfying texture.  The boys were less than pleased with their sandwiches.  I suggested they try Udi’s brand sandwich bread, and this was a hit.  Flax-4-Life muffins passed the test as well.  Gluten-free tortillas helped make fresh, filling, wraps a part of the routine.  Nacho night was a favorite.  The whole family was eating gluten-free.  But keep in mind – this family extends beyond more than just one.  Miranda’s three sons spend every other week with their father.  Eric’s son is with his mother during school days.  No matter how amicable ex-husbands and wives may be, asking them to change the way they eat and prepare their food can feel like a bit much.  Convincing others of the risk in eating gluten can be a slow, daunting, process.  While Eric and Miranda informed their respective ex-spouses of the dietary changes in their own home, they did not request that the same be done in these other homes.  Only one of their children was getting a fully gluten-free experience: their infant daughter.  And, yes, gluten is passed through breast milk.

Weeks One through Three

Eric’s acid reflux, intestinal upset, nausea and vomiting subsided very quickly.  By the end of the second week he was eating trouble-free.  While Miranda did not identify any specific health complaints at the beginning of the challenge, she did note an increase in energy.  Both parents were happy to see their daughter sleeping for longer stretches at night and crying less during the day.  Coincidence or not, Miranda felt the changes on their shopping list and in the kitchen were manageable, and that Eric’s health was worth it.

Weeks One through Six

The end of the six-week challenge coincided with a family gathering in Portland.  It was a meet-the-baby, meet-the-in-laws party, held at the home of Miranda’s aunt and uncle.  I traveled prepared not only with gifts, but also a bag full of snacks my children could safely eat on the go – dried apples, Larabars, popcorn, trail mix, beef jerky, fruit strips.  There’s nothing worse than having two small children with you who are, a) hungry, and b) feeling excluded by diet.

Something I could not pack for?  The grown-up version of hungry exclusion: being questioned, grilled, and often even challenged on the necessity of living a gluten-free lifestyle while we eat.  Eric and I both dislike this very much.  We agree it takes all the enjoyment out of dining with others.

I was in for a happy surprise.  Miranda’s aunt had taken the time and consideration to prepare a fully gluten-free snack and multi-course dinner.  She knew even to avoid her regular cutting boards, wooden utensils, and other porous cooking supplies that have been used for preparing food containing gluten.  We spent the afternoon grazing on an array of fresh fruits and vegetables, tasty crackers, homemade dips, chips and salsa.  Dinner was spaghetti with marinara made from scratch; free-range sausage; bread rolls with seasoned butter; marinated golden beets with grilled asparagus, gorgonzola, and walnuts; and (what was of course the biggest hit with the younger set) vanilla cake and chocolate chip cookies.

I could not stop thanking Miranda’s aunt for her kindness and hard work.  She brushed it off like it was nothing.  What she said was, “It’s a lot easier for me to buy a different kind of pasta than it is to prepare two different meals.  And certainly easier than it is for you and your brother to deal with getting sick”.  She was right, of course.  But people rarely see it this way.

community

10 Reasons to Get Involved with Your Gluten Free Community

Studies have shown that celiac disease/gluten intolerant patients do better, and stay healthier, when they are involved with a gluten free community.

1. Money – You will save money by learning about gluten free product specials from your fellow GF community members.

2. Products – Not only will you learn about coupons, and specials, you will also learn about new products, and products that taste bad or that made someone sick.

3. Emergencies – During an emergency it will be hard for people with food intolerances, and allergies to find food that is safe for them to eat. With a community of people who need safe food it will be easier to find food that is safe to consume.

4. Support – When first diagnosed, many people have a hard time coping with their diagnosis. Joining a gluten free community can help you learn how to cope with your new lifestyle, and you will find the support you need to continue. While on the gluten free path it is also not uncommon for people to change their diet, learn of new diseases, and stumble upon other challenges. Having someone in your life that understands those challenges will help you succeed.

5. Myths – There are many myths associated with celiac disease, gluten intolerance, and living gluten free. There is no better way to debunk those myths than with information from an entire community.

6. Recipes – Many gluten free recipes take trial and error to help perfect. Friends and GF community members can share recipes, and stories of trial and error.

7. Restaurant reviews – With the gluten free trend on the rise more and more restaurants are claiming to have a gluten free menu. Unfortunately, not all these claims hold true. The more gluten free people you know, the more you will find out about which restaurants hold true to their gluten free claims.

8. Research – Every day there is more research and information coming out about celiac disease, and gluten intolerance. With a GF community it will be easier to learn about all different types of information and research.

9. Motivation – Some days are easier than others, however, it is not always easy to be gluten free. Having a friend can help motivate you to stay gluten free.

10. Social – One of the biggest challenges of Celiac Disease are the social aspects of eating gluten free. Nothing is better than a friend who understands.

If you live in the Corvallis area there are two easy ways to get involved with the gluten free community. The first is to attend the Corvallis support groups. These support groups take place every third Saturday of the month, and are located at the First Congregational United Church in Corvallis, OR.  See this page for more information. The second is to come into the Gluten Free RN office (215 SW 4th St). We are open Monday – Friday 9-5. In the office we have articles, books, recipes, resources, and much more. Our office is extremely unique, and there are very few, if any, similar to it in the country. We are here to help anyone learn more about celiac disease, and gluten intolerance. Come visit us soon!

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GF Travel in Europe

We received these recommendations from one of our readers who recently traveled throughout Europe. Her advice is useful to anyone with gluten intolerance traveling in Europe:

In France, Belgium and Germany I found gluten-free products fairly easy to source in the larger supermarkets and natural food/vitamin stores. The larger markets had entire end displays or aisle sections devoted to gluten free, natural and organic foods, sometimes mixed in with or located near the diet foods. The larger, newer, fancier supermarkets also offered deli-style, to-go foods like green salads, small cold cut plates, veggie plates, etc. which worked well for me. One large, multi-country market chain we found is Carrefour. The one we stopped in offered a wide variety of GF products.

Many of the processed, ready-to-eat gluten free products like cookies and crackers also indicated lactose free. In addition, they offered breads, snacks, baking mixes, pastas and more.

Look for “gluten frei” or “laktose frei” on German product labels or “sans gluten” or “sans lactose” on French labels. Travelers to Spain will want “sin gluten” and “sin lactosa” products.

Soy products abounded, including yogurts and puddings.

Whereas in Corvallis I see GF-friendly shelves with a variety of items from many different manufacturers, in France/Belgium/Germany there appeared to be products from one or two companies – an extensive, in-depth selection from each company. See the photos for better understanding.

Recommendations:

  • I wish I would have taken some peanut butter for easy protein and GF salad dressing for restaurant use or to-go salads.
  • I carried a small bottle of Lactaid pills, and they helped to bail me out of some tricky food situations.
  • I carried Tums, gas pills and stool softeners – all of which I’d recommend to GF travelers.
  • I packed some GF instant oatmeal packets which saved the day more than once when I couldn’t eat what was offered for breakfast (normally bread with butter, yogurt and coffee with milk) or was available in the dining car on the train. It was pretty easy to ask for a cup of hot water and a spoon.
  • And, I carried some Lara and Kind bars, plus some protein packets to mix into juice.

In restaurants it was more challenging to find truly safe foods. Although I asked for salads with no dressing, requesting oil and vinegar to be separate, I usually ended up with vinaigrette dressing served separately in a small bowl. I couldn’t get them to understand the separate oil and vinegar option. In asking how meat was prepared, and requesting no butter or cream or sauce, my tummy often told me after the fact that instead of pure oil, there had been cross-contamination on the grill or perhaps the cook had used some sort of dairy product in the preparation.

I would recommend taking some note cards in different languages explaining GF/LF needs so the waitress and the cook can clearly understand what you can and cannot eat.

Generally safe foods I found readily available in restaurants were green salads, steak, and French fries in France and Belgium. In Germany I relied on sausages and pork, sauerkraut, boiled potatoes, green salad. Occasionally I found roast or grilled chicken.

Requesting meals

You can also request gluten free or special diet meals on the airplane if you do so at least 48-hours ahead of time. But, pack some safe food just in case! One flight worked well for me with veggies-rice-grilled chicken, fruit cup and green salad…and one didn’t work at all due to a lack of the online request form not getting processed – so they had no GF meal for me.

We stayed in two B&B’s in France which offered dinner made with local, garden-fresh ingredients. We made dinner reservations with them, and I let each hostess know about my GF/LF issues. I asked that they make their regular foods, saying I’d just eat what I could – not wanting to be a problem child… but also not wanting the hostess to think I didn’t like her meal if it was something I could not eat. BOTH hostesses made delicious dinners that were all or primarily all gluten and lactose free! J

Update 2015: Here’s a site to check out for travel in the UK: http://www.go-gluten-free-wheat-free.co.uk/

ada

ADA: Celiac & Gluten

What is the ADA?
“The Americans with Disabilities Act (ADA) is a federal civil rights law that gives protections to individuals with disabilities similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion. It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, State and local government services, and telecommunications.”

Essentially the ADA provides the public with protection against discrimination, and provides equal employment opportunities.

How does the ADA define a disability?
Under the ADA a person with a disability is described as someone who has a physical or mental impairment that substantially limits one or more major life activities, has a record of such impairment, or is regarded as having such impairment.

2011 – New Regulations:
In the past it has been questionable if celiac disease, gluten intolerance and other disorders were considered disabilities under the ADA. In March of 2011 a new set of guidelines were put in place that expanded the definition of disability:

The ADAAA expanded the definition of disability by introducing a new, non-exhaustive list of major life activities that include: caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working. Also, for the first time, the ADAAA has stated that major life activities will include the operation of major bodily functions, including but not limited to functions of the immune system; normal cell growth; and digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine and reproductive functions.”

Invisible disabilities:
Celiac disease is also considered an “invisible disability” under the ADA. “Invisible disabilities” is an umbrella term that captures a whole spectrum of hidden disabilities or challenges. Celiac Disease, Food allergies, and other intolerances are all considered invisible disabilities.

Family Medical Leave Act:
Celiac disease is considered a “chronic and serious” health condition, and therefore it is covered under the family medical leave act. What does this mean? Essentially this means that with a doctors note there are a specific set of rules that prevent a celiac patient from losing their job if an extended period of time is need off for celiac related reasons. If you live in Oregon, click this link for more information: http://arcweb.sos.state.or.us/rules/OARS_800/OAR_839/839_009.html

Students With Celiac Disease:
School can be especially difficult for anyone with celiac disease. Luckily, students with disabilities are covered under Section 504 of the Rehabilitation act of 1973.

What is Section 504?
“Section 504 of the rehabilitation act of 1973, a federal civil rights statute, is designed to prohibit discrimination on the basis of a disability in an educational program or institution. This prohibition extends to any educational institution accepting federal funds. Students with disabilities under this act are afforded accommodations and modifications to their educational program to ensure equal access.”

Essentially all public schools and any federally funded programs must provide equal access to all programs and services as those who are not disabled.

What about colleges?
Colleges are required to abide by section 504. The section states that if a school accepts federal funding then they must abide by the 504 act, and therefore must make any necessary accommodations. Which in turn means that schools (even colleges) must provide equal programs and services to all students.

Currently there are colleges across the nation that have began to accommodate gluten free needs. Here in the Willamette Valley both Oregon State and the University of Oregon have implemented gluten free menus.

How do I file for a 504 plan?
Documentation requirements vary by state however usually school officials will require proof of diagnosis, explanation of how celiac disease affects diet, and how it may adversely affect a person in an educational setting.

There are several resources on the web that give detailed instructions on developing a 504 plan that works for you or your child:

http://americanceliac.org/wp-content/uploads/docs/ACDA-DREDF%20Model%20504%20plan.pdf

http://www.celiaccentral.org/kids/Kids-Parenting-Guides/Kids-Youth/Navigating-The-School-System/209/

http://www.celiaccentral.org/SiteData/docs/504%20Plan%20R/fcd141e36d5775c0/504%20Plan%20Roadmap%20for%20the%20Accommodatio…a%20Student%20with%20Celiac%20Disease%20-%202011.pdf

Further Assistance?
If further assistance or information is needed on this topic you can contact the Americans With Disabilities Act for more information. The ADA may provide you with a caseworker that can help you with your specific situation.

Resources:
http://celiacdisease.about.com/od/schoolage/a/504plans.htm

http://arcweb.sos.state.or.us/rules/OARS_800/OAR_839/839_009.html

http://sullivanmedical.wordpress.com/2010/03/03/americans-with-disabilities-act-section-504/

http://www.celiaccentral.org/kids/Kids-Parenting-Guides/Kids-Youth/Navigating-The-School-System/209/

http://www.sjlaboremploymentblog.com/revamping-the-americans-with-disabilities-act/

 

wheat-germ-oil

Wheat Germ Oil

Gluten Free but not Wheat Free?
It is well known in the gluten free community that wheat free does not always mean gluten free. However, it is not as well known that gluten free does not always mean wheat free. Recently, we have discovered several products labeled gluten free that contain wheat. After finding these products, our office decided to investigate further. We found that in almost all of these “gluten free” products wheat germ oil was listed in the ingredients. We wanted to know more; what was wheat germ oil, how could it be labeled gluten free, and was it harmful to celiacs and gluten sensitive individuals?

What is Wheat Germ Oil?
Most frequently used in cosmetics due to its high vitamin E content, wheat germ oil is known scientifically as triticum vulgare. The only oil that is derived from a gluten containing source; wheat germ oil is a fatty acid found in very small quantities within the small embryo of the wheat plant.

Is Wheat Germ oil Gluten Free?
Typically, when wheat germ oil is used it has been refined. The refining process in theory removes all gluten proteins, and therefore would make wheat germ oil free of any gluten proteins. Although it is likely to be a small amount it is possible for refined oils to contain trace amounts of gluten. These trace amounts may be left over from a poor refining method or from cross contamination that may occur during the process. We essentially relate this to a product that is labeled “gluten free” yet made in a manufacturing plant that also process wheat. These are products that we believe should not be labeled gluten free and most often do contain gluten.

Can Wheat Germ oil be Labeled as Gluten Free? 
There are no gluten free labeling laws in the United States. There are a set of “proposed laws” that state products under 20ppm gluten may be labeled as gluten free. Due to the low amount of gluten, these proposed laws would make wheat germ oil a “gluten free” product in the United States. Furthermore, the FDA states, “highly refined oils and ingredients made from highly refined oils are exempt from allergen labeling.” The US Department of Agriculture states “A benefit of refining oils is that the refining process renders them virtually free of allergenic protein”. This would then imply that wheat germ oil is an allergen free product, and exempt from all labeling laws.

Is Wheat Germ oil Safe for Celiacs?
According to celiac centers in the United States and Canada wheat germ oil is not a safe product for celiacs and gluten intolerant individuals. Here at the Gluten Free RN we are in agreement that wheat germ oil is not a safe product to use. We believe that using a product derived from wheat is too big of a risk to take. It is still possible that this product may contain a small amount of gluten, and we believe that any amount of gluten is too much for a gluten free diet. It is also important to remember that there are subsets of people who are both intolerant to gluten and allergic to wheat. These individuals would have a definite reaction to any products containing wheat germ oil.

 Identifying Wheat Germ oil in Products: 
Wheat germ oil is often found in beauty products and may be labeled as tocopherol (vitamin E). Although the amount of wheat germ oil found in tocopheral may be low, it is important to always contact the manufacture to insure their vitamin E is derived from a different source. If the manufacture does not know where their tocopherol is derived from we recommend finding an alternative beauty product. Remember any amount of gluten is too much!

 Wheat germ oil can also be found in edible products including chocolate, and other processed products. Our office has found that these products are labeled gluten free but not wheat free and do include “wheat germ oil” on the ingredient list. Currently we recommend keeping these products out of your gluten free diet. The manufactures may insist that the gluten protein has been completely removed from their wheat germ oil but we believe that is too bold of a statement to make. There are just too many unknowns about wheat, gluten intolerance, and the affects of wheat germ oil on a gluten free diet to allow it to be part of our diets.When it comes to wheat germ oil we will use our golden rule; when in doubt, go with out!

kissing-kids

Where is Gluten Hiding in Your Life

We live in America and gluten is everywhere!

Below are just a few of the places gluten can hide…

Your Significant Other:
Can you get gluten contaminated from kissing someone?

The answer is yes.

When my husband reaches over for a kiss… I always have to stop and ask him; do you have gluten mouth? Although this might not seem very romantic, either is the horrible aftermath that will occur if he kisses me with a mouth full of gluten.

Update: Shortly after this post my husband went 100% gluten free. Our entire house is now gluten free including the pet food 🙂 

Gluten CAN be transferred from one mouth to the next! If your significant partner is not ready to make the switch to a gluten free lifestyle they can take a few precautions, to ensure they do not poison you.

We keep mouthwash in almost every room of the house, that way my husband can be lazy, and wash out his mouth no matter where he is. We also tote around a travel size mouthwash, and toothbrush. We also take other precautions in our home. My husband has his own gluten everything! He has his own cupboard, cabinet, pans, utensils, and plates. He also washes his hands after touching anything that has gluten in it.  We also keep gluten free sanitizer wipes in every room in case of any over spills.

Beauty products:
Gluten is hidden a lot of beauty, and cosmetic products. See our cosmetic blog:
http://glutenfreern.com/gluten-free-cosmetics/

Beer and distilled liquor:
Beverages can be tricky. Many people make the mistake of thinking their beverages must be gluten free when in fact they are not. This includes juices, smoothies, milkshakes, and any other beverages. Always make sure you know how your product is made and all the ingredients that go into that product. Some red flag ingredients in beverages are; natural flavors, caramel coloring, added preservative and manufactured in a facility with wheat.

Almost all beer does contain gluten. Luckily, there are now a large number of quality gluten free beers on the market, and the number of safe options is growing. It is also an option to try hard ciders. However, it is important to make sure the cider is labeled gluten free. Not all hard ciders are free of gluten, and wheat!

Most distilled liquors are considered “gluten free”. It is said that the gluten protein is “washed” out of the alcohol through the distillation process. However, not only have we found that many celiacs cannot tolerate grain alcohol, it is also important to be aware of cheap liquor. Several of the cheap liquors do not use a thorough distillation process, and some of the gluten proteins may still be present.

It is also important to be aware of any alcohol with coloring or flavors as these may contain some source of gluten. If you do decide to drink distilled liquor then we suggest sticking to alcohol that is not derived from a grain. Some suggestions are; rice or potato vodka, tequila, and light rum.

Licorice:
Gluten is used in candy to give it those stretchy elastic properties. All big name brand licorice has gluten in it. This includes; Twizzlers, Good & Plenty, and any other big name brands. There are some brands that make “gluten free” licorice, however it is important to read the label every time, and be aware of cross contamination.

Gum:
Gum is one of those products that fall into the grey category. It is quite possible that most gum does contain some form of gluten. Trident is one company that is listed as being gluten free.

Soy sauce:
Almost all soy sauce has wheat in it.

San-J and Kikkoman are both companies that do make a line of gluten free soy sauces. Their products can usually be purchased at local grocery stores or through online gluten free stores.

Soups:
Wheat is used as a thickening agent in almost all soups and sauces. Always read the label, and when in doubt go without. Some companies that offer gluten free soups are: Pacific Natural Foods, and The Gluten Free Café.

Salad dressing:
Salad dressing can often have a hidden source of wheat that is not displayed on the label; many companies will use wheat to help thicken the dressing. Some options for salad dressing are: Olive oil, and lemon juice, balsamic vinegar, purchase a “certified” gluten free option or make a different variety at home.

Tea and coffee:
Many people often make the mistake that all tea, and coffee is gluten free. All plain coffee grounds should be gluten free. The problem arises when flavors are added into the coffee grounds or espresso drinks. Often these flavors will have additional ingredients that may contain gluten. If you choose to drink coffee from places other than home, we suggest finding a place that you trust and knowing all the ingredients that go into your drink.

An example of this is Toroni syrup, Toroni is often used in espresso drinks and other flavored beverages. If you look at Toroni’s ingredient list it states that all their drinks are wheat free. However if you dig a little deeper you will find that five of their syrups do contain gluten. Here are the ingredients for their caramel flavored syrup: Pure cane sugar, water, natural flavors, citric acid, sodium benzoate, and potassium sorbate. Most would look at these ingredients and assume this was gluten free. Unfortunately this is one of the syrups that do contain gluten. The other syrups that contain gluten are; Bacon, SF Caramel, Marshmellow, and SF French Vanilla.

There are two issues that come into play when dealing with tea. The first is the packaging. Many companies will use gluten to help the tea bag stay closed, and this gluten can contaminate your tea bag. The other issue is that many companies often put barley into their herbal teas. There are some great options for gluten free tea; Tazo* and Celestial Seasons both have gluten free options.

*Not all Tazo Teas are gluten free. The following teas do contain gluten: Green Ginger, Honeybush, Lemon Ginger and Tea Lemonade.

Deli meat:
Almost all processed meat has some source of hidden gluten in it. When I buy lunchmeat or any other processed meat I always make sure it says gluten free on the label. If you prefer to purchase deli lunch meat, I suggest going to the supermarket when it first opens so all the counters, cutters, and knifes are clean. Then ask the deli person to help you check ingredients. Make sure that they understand that all surfaces need to be cleaned, and that they will need to change their gloves before helping you with your purchase.

Farmland Foods provides a great example of a lunch meat that may have hidden gluten. When looking at the ingredients on their deli meats you will not find any mention of gluten.

Here are the ingredients from one of their deli meats: Pork liver, pork, bacon (cured with: water, salt, sugar, sodium phosphate, sodium erythorbate, sodium nitrite), water, salt, dextrose, flavorings, sodium nitrite.

With a closer look we found this information under their FAQ section on their website we found the following information: Spice formulations from our suppliers and secondary suppliers can change from time to time and still be correct under USDA labeling requirements. Because of this, along with the possibility of cross-contamination from the secondary suppliers to our own main ingredients, we cannot absolutely guarantee that any of our products will be gluten-free.

Wheat free products
When buying processed products it is important to always read the label. If a product claims it is “wheat free” that does not mean it is gluten free. Remember gluten is not just wheat and can come from several other sources. Only buy products that are; wheat free, gluten free and manufactured in a dedicated or clean facility. Always be cautious of products that claim they are gluten free but are also made in a facility with wheat.

Medicine:
All medicine has the potential to contain gluten.

For prescription medicine:
We recommend always checking with your pharmacist, and doctor before talking any medicine. The Gluten Free RN office can also test any medication for $10. If your pharmacist or doctor refuses to help you find the ingredients in your medicine please let us know.

Over the counter medicine:
Did you know that beano contains gluten? It is essential to always read the label on your medicines! However, some medicines will not list all of their ingredients on the label, it might be necessary to call the manufacture to make sure it is safe.  There are also websites that provide extensive lists of gluten free medication. If you chose to use these lists make sure that all the information is up to date.

Play-doh:
All play-doh has gluten in it! Here is a recipe to make your own play-doh at home: http://celiacdisease.about.com/od/raisingaglutenfreechild/r/PlayDough.htm

French fries:
French fries from fast food restaurants are NOT gluten free. Nine times out of ten these restaurants will use a common fryer for their fries, chicken nuggets, tater tots, ect. That common fryer WILL contaminated your fries with gluten. We recommend staying away from all fast food. We believe that the risk of cross contamination is just too high. If you are craving burgers and fries it is always an option to make your own at home or find a local restaurant that can adjust to your needs.

*Be aware that not only are McDonalds Fries made in a common fryer. They are also coated with wheat and milk.

Processed food:
To be on a completely 100% gluten free diet taking out processed food may be essential. It is important to remember that even a bread crumb can trigger the same autoimmune reaction as a piece of bread.  Here is a link to an excellent resource on processed food containing gluten: http://glutenfreecooking.about.com/od/gettingstarted/a/hiddengluten.htm

Cleaning products:
It is important to make sure that all of your cleaning products are gluten free. There are several natural cleaning products out there. Both apple cider vinegar and baking soda make great safe cleaning products.

Sources:

Lapid, Nancy. “N/A.” Celiac Disease – Gluten-Free Diet. 26 Jan. 2008. Web. 09 Apr. 2011. <http://celiacdisease.about.com/>.

Sarros, Connie. “Hidden Sources of Gluten.” Celiac Solution. Web. 09 Apr. 2011. <http://www.celiacsolution.com/hidden-gluten.html>.

www.Celiac.org

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Gluten Free Cosmetics

Say Goodbye To Your Gluten Filled Makeup Bag

Do you really need to worry about health and beauty products such as shampoo and hair spray? How about mascara and eyeshadow? Do these products even contain wheat, barley, rye or oatmeal?

The simple answer is ‘yes’ most cosmetic products do contain some form of gluten and can cause symptoms, especially for people that are exquisitely sensitive or have the rash DH.

People with gluten intolerance, celiac disease and dermatitis herpetiformis ARE sensitive to gluten in their personal care products. Everything that is placed on your skin has the potential to enter in your bloodstream. Accidental ingestion can also happen if any gluten containing ingredients are on your skin, hands or around your mouth. Although you might not eat your eye shadow or mascara it does have the potential to get on your hands, and then into your mouth, eyes or nose.

The Gluten Free RN has set out on a mission to find gluten free beauty products. We have formed a list of companies that claim to have gluten free cosmetics and beauty products.

Please use this list of companies as a resource guide for finding products. With the following precautions in mind:

  • We have not tested every product from every company and therefore cannot guarantee that every product is 100% free from gluten.
  • Companies change formulas and ingredients in their products often. When ordering a product we recommend checking the ingredients, and emailing the company for verification.
  • Everyone has different skin. While one product may work for me it might not work for you. We recommend testing products on your skin before purchasing them. Many companies will give away or sell samples that can be used as a tester before you decide to make a purchase.

The Hidden Ingredients

Gluten can be very sneaky and as many of you know appears in all different places. Below is a list of the many ingredients gluten can hide in your beauty products:

  • Avena Sativa (Oat) Kernel Flour
  • Cyclodextrin
  • Dextrin
  • Dextrin Palmitate
  • Hydrolyzed Malt Extract
  • Hydrolyzed Oat Flour
  • Hydrolyzed Vegetable Protein
  • Hydrolyzed Wheat Flour
  • Hydrolyzed Wheat Gluten
  • Hydrolyzed Wheat Protein
  • Hydrolyzed Wheat Protein/PVP Crosspolymer
  • Hydrolyzed Wheat Starch
  • Secale Cereale (Rye) Seed Flour
  • Triticum Vulgare (Wheat) Germ Extract
  • Triticum Vulgare (Wheat) Germ Oil
  • Triticum Vulgare (Wheat) Gluten
  • Triticum Vulgare (Wheat) Starch
  • Wheat Amino Acids
  • Wheat Germ Glycerides
  • Wheat Germamidopropalkonium Chloride
  • Wheat Protein
  • Wheatgermamidopropyl Ethyldimonium Ethosulfate
  • Yeast Extract

Gluten Free Cosmetics Companies

Below is a list of companies that claim to have mostly or all gluten free products. As a reminder: We have not tested all of the products or companies on this list. If you have highly sensitive skin we suggest contacting the company for a list of ingredients and testing their product on your skin. The Gluten Free RN can also test any product for the presence of gluten under 10ppm at our downtown office.

This is box title
Afterglow Cosmetics
This is a 100% gluten free cosmetic company. A woman whose family struggles with gluten intolerance started the company. She knows how severe gluten intolerance is and she is dedicated to maintaining a completely gluten free line.
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Everyday Minerals
(Email from the company:)
Hello Sam,
Thank you for contacting us.  The Tocopherol  (Vitamin E) used in our Lip Balms and Glosses is derived from Soy.  Other products that do contain the Tocopherol are the Pressed Powders. Our products are vegan based, free of carmine, nuts, lake dyes, fragrance, bismuth oxychloride and parabens.  Our powders consist of: mica, titanium dioxide, zinc oxide and iron oxides.  Our finishing powders vary and some consist of  kaolin powder.

All of these products should work well for you, but you may also want to check a gluten list of ingredients to avoid, since everyone’s skin is different.  We do recommend doing a skin patch test when trying a new product to see if your skin is happy with the product.  If your skin is sensitive to a product then wash your skin with water and discontinue use.

The Product Page does have a tab with the list of ingredients, which you can use for reference before making a purchase. Simply select the product of your choice and then select the Ingredients tab at the bottom of the page to view the ingredients for that product (there will also be a Details and Usage Tips tab).

Please let us know if you have any additional questions.
Cristy,
Everyday Minerals

This is box title
Joelle Cosmetics
This is another 100% gluten free, celiac disease friendly company. They have mineral makeup and are dedicated to providing good quality gluten free cosmetics.
This is box title
Monave
This company is a gluten free cosmetic company with mineral products. Their products can be purchased through their website.
This is box title
Red Apple Lipstick
Direct from their website:
We help women, especially those with gluten intolerance and other sensitive allergies, feel great, look great, get compliments and enjoy makeup again! All Red Apple Lipstick products are certified gluten free, paraben free, soy free, dairy free and allergen free. Our lipsticks are also vegan, natural and cruelty free, but you wouldn’t know it, unless you asked!
This is box title
100% Pure
Direct from their website:
Are your products gluten free? If so, where does the Vitamin E come from?

Most of our products are gluten free. We are sensitive to this since we know many people suffer from gluten allergies. One common ingredient that contains gluten is Vitamin E. But the Vitamin E we use is gluten free because it’s derived from cold pressing rice bran.