Tips for Going Gluten-Free

CPK 4When you are first diagnosed, it’s a bit overwhelming to try to figure this whole thing out. Usually, if you have a good doctor, they’ll send you off with what to look for in ingredients at the grocery store and the most common types of processed foods with gluten or likely to contain gluten–bread, soup, soy sauce, gravy, dressings, etc.

What is often missed is the other products you need to be watching for, like personal care products and medications. Or what you need to buy for your kitchen to ensure it’s gf, especially if you are going to have a shared kitchen. How will you figure out what’s safe when eating out? What do you do if you accidentally eat gluten?

First, do not panic. It will be okay.

PERSONAL CARE PRODUCTS

Personal care products aren’t usually at the top of someone’s list to check for gluten. I remember hearing/reading debates on whether or not gluten can be absorbed through the skin. The plain fact is anything that reaches your lips or gets inhaled through your nose gets to the digestive system. So, if you have a hairspray or hair product with gluten in it, you can still inhale it or touch your hair and then grab a carrot stick that you shove in your mouth. Same goes for makeup.

Oats in personal care products are only safe if they are grown through purity protocol. If “purity protocol” is a new term for you, go here to learn more about it. Oats do not contain the gluten protein like wheat, barley, and rye, but are usually processed with those grains and therefore contaminated. Many food companies right now are using “sorted oats” (see the previous link for information on this if needed) in their gluten-free products and it’s making us sick. To make it easier on myself, I just avoid any personal care products with oats listed. I’d rather be safe than sorry.

The Gluten-Free Makeup Gal is a great resource for gf makeup. She has a list of products/brands that she keeps updated as she gets information. It’ll take out the guesswork, but ingredients should still always be checked.

Keep in mind that gluten from other people’s personal care products could transfer to you through touch. This is not something that I worry about too much since I’m not in physical contact with a lot of people on a daily basis.

Make sure the products your hair stylist uses are gluten-free. This means you’ll have to read the labels. The place I go to has a listing (it’s an Aveda salon & spa) and keeps my allergies/intolerances in my record, but I still double check products if they want to try something new.

The following is a list of gluten derivatives used in personal care products (not a complete list):

  • Amino peptide complex
  • Amp-isostearoyl hydrolyzed wheat protein
  • Avena sativa (oat) flour
  • Avena sativa (oat) flour kernel
  • Barley derived
  • Barley extract
  • Disodium wheatgermamido PEG-2 sulfosuccinate
  • Hordeum vulgare (barley) extract
  • Hydrolyzed wheat gluten
  • Hydrolyzed wheat protein
  • Hydrolyzed wheat protein PG-propyl silanetriol
  • Hydrolyzed wheat starch
  • Hydroxpropyltrimonium hydrolyzed wheat protein
  • Oat (avena sativa) extract
  • Oat beta glucan
  • Oat derived
  • Oat extract
  • Oat flour
  • Phytophingosine extract
  • Rye derived
  • Sodium lauroyl oat amino acids
  • Triticum vulgare (wheat) flour lipids
  • Triticum vulgare (wheat) germ extract
  • Triticum vulgare (wheat) germ oil
  • Tocopherol*
  • Tocopherol acetate*
  • Vitamin E*
  • Wheat (triticum vulgare) bran extract
  • Wheat amino acids
  • Wheat bran extract
  • Wheat derived
  • Wheat germ extracts
  • Wheat germ glycerides
  • Wheat germ oil
  • Wheat germamidopropyldimonium hydroxypopyl hydrolyzed wheat protein

*These ingredients are not always derived from gluten.

When in doubt about the ingredients listed, call the customer service number on the product to verify. If you have any doubt, it’s better to move on and find something else than to chance getting sick.

 

MEDICATIONS

Gluten is often used in medications as a filler (it has no other use in medications other than that). Because the FDA ruling on labeling last year does not include medications, companies are NOT required to print on their packaging if medications contain gluten. For prescriptions, even pharmacists don’t check (unless you have an awesome pharmacist). The key for prescriptions is to know ahead of time. I use the following: http://www.glutenfreedrugs.com/. I keep a printout in my medical binder that I take with me for all major appointments. The list is subject to change based on the companies changing formulas. Make sure once you and your doc decide on the right med, that they write the script as “DAW” (dispense as written), that’s the instruction to the pharmacist to not sub for a cheaper generic or for something by another company because they are out of what you need.

For OTC meds, if you are unsure of the ingredients, ask the pharmacist if they know. Otherwise, call the customer service number on the packaging.

Make sure your dentist uses gf products in your mouth. Because I avoid fluoride too, my hygienist uses a pumice to clean my teeth. I find I like the pumice better, it’s finer than the teeth cleaner they have and feels less gritty to me. (I know, I’m weird)

SHARED KITCHENS

It is common for one or two family members to go gf and the rest of the family continues to eat gluten in the home. There are precautions that need to be taken when this happens.

If gluten-full flour is being used to make something, take it outside. The flour will get in the air and can be breathed in, causing a glutening even if you didn’t touch or eat it.

You will either need two toasters or special toasting bags if you want gf toast (or you can toast in the oven). I had bought a toaster oven, but Chaz stopped having gluten-full bread in the house and we got rid of that toaster. The toaster oven is also handy when I want to reheat leftovers like I would in the oven, but don’t want to use the oven.

Anything that is spread on something gluten-full with a utensil you will need two of, one for dedicated gf use. OR gluten eating members can flick the condiment onto their bread if they think they need more and then spread when they are done with it. More and more things are coming in “squeezable” bottles like jelly, mayo, etc. These can eliminate the need for double of everything. Everyone in the house has to mindful. The gf items will need to be clearly marked (special stickers, etc. whatever you choose and is easy for everyone to remember).

Stainless steel pots and pans are your best bet for shared kitchens. Anything non-stick that’s been used to cook gluten isn’t safe for gf due to gluten that can get stuck in scratches and whatnot. It’s a pain in the ass, yes, but even a cheap set will do. My BFF bought a set from IKEA the first time I visited after going gf (It was a skillet and 2 pots with lids) and it serves us well every time we visit. The same goes for any old plastic cooking utensils with scratches on them.

If you do gf and regular pasta, you will need a dedicated gf strainer if you use one to drain pasta. Gluten can stick in the holes and transfer to the gf pasta.

In the pantry, anything gf should be stored above gluten-full items. This is to prevent cross-contact should something bust open and get make a mess. If there are snacks that are gf that everyone eats (say a bag of chips), the best way to keep from having two of each is to make sure everyone POURS out a portion into a bowl instead of reaching their potentially gluten-full hands inside. Or you can pour some from the newly opened bag into a container for yourself and let the others go at the bag however they want. Unless they all make sure they wash their hands first (which I know with kids is a battle) it’s probably easier one of the other two ways. It’ll be hard to get used to, my extended family was frustrated at first when I wouldn’t let them reach into my snacks like I used to and instead poured stuff into their hands. Again, it’s better to be safe than sorry.

As far as the gluten eaters snacking in the house, I have a friend whose husband puts his food on old dinner trays to keep the crumbs contained and they can just wash the tray without tracking down crumbs.

If cooking a set of gf food and gluten-full food (say chili), make sure to use different utensils for both and do not mix them up. The same goes for if you are grilling and have gf stuff on one side. Most grills (if shared, will need a thorough cleaning between uses. I’ve had people grill my food first (on small grills) or line the grill (on big ones) with foil where my food will be cooked. Restaurants will do the same with the foil if they feel it is safer.

GLUTEN-FREE MEALS

Your best bet is to menu plan and make a shopping list. It can take getting used to if you don’t normally plan meals ahead of time. I have a system of planning on a whiteboard and then making my shopping list with it broken down into the following: protein, produce, dairy, packaged, and sometimes “non” when I need parchment paper, deodorant, etc. It makes it easier for me to double check that I have everything from one department before moving on to the next.

Another best bet is to not rely on gluten-free processed products. You can do healthier swaps with things like large leafy greens as wraps instead of bread or tortillas; spaghetti squash or zucchini (spiralized) in place of gluten-free pasta; grated cauliflower instead of small grains like rice, bulgar wheat, barley, etc.; mashed/pureed vegetables (cauliflower, rutabagas, turnips, parsnips, etc.) instead of mashed potatoes; nuts instead of potato chips. This is by no means telling you you must be healthier or can’t indulge. This is just a view into how some of us do gluten-free without breaking our wallets with the expensive bread, pasta, crackers, etc. every week.

Take your own snacks/food with you when running errands/traveling. While it is getting easier to find gf snacks on the run, until you get used to it, taking your own with you will be easier and less stressful.

Be vigilant about reading labels. Even though we have FDA regulations (that didn’t exist when I first went gf), they are inadequate and there are many items labeled gf that aren’t really gf. Also, do not rely on “certified gluten-free” seals on products. Some of the items found to have gluten containing ingredients listed are “certified” and when you learn about how some of the certifications are done and “overseen” you’ll understand – but that’s not for this post. I would highly recommend following Gluten-Free Watchdog on social media (Facebook and/or Twitter) and subscribing to her reports – it is a monthly fee that, if you can afford it, is completely worth it to have access to the information on product testing that she does. She will often post products on Facebook and Twitter that readers find that have gluten ingredients listed on something labeled gf.

EATING OUT

Many restaurants today have gluten-free menus or options for gf on their menus. It’s always best to let your server know that you are gf. There are items that should be cooked on a dedicated surface like waffles or (again) toast, or fryer for deep fried items. If those are on the menu, ask if they have a dedicated waffle iron or toaster or fryer for their gf item listed. If the answer is no, do not take the chance. There were many restaurants we went to on our road trip two years ago that I had to pass on before they didn’t have a dedicated waffle iron or toaster. These are the places I didn’t write about but I let them know that if they didn’t have those dedicated surfaces, they weren’t safe. Let me also mention here, that these were places we found on the app Find Me Gluten-Free. So many people were giving rave reviews of these places and it floored me that these are people with Celiac or NCGS who either didn’t ask or took the chance. While the app served me well for awhile, I stopped using it on that trip because it became unreliable simply because the reviewers weren’t doing due diligence when at the restaurant and the last straw was a place that, when we got there after a long morning/afternoon of driving, told me they could only serve me a gf bun.

Buffets and potlucks are iffy. If you’re at a potluck take a dish you know you can eat and ask about serving yourself first before serving utensils get dipped in gluten-full dishes. If possible, talk to the host beforehand and see if they are able to set up a separate table for only gf dishes (like salads, cold cuts, cheeses, etc.), that way you know off the bat and don’t have to guess while going through the line. Because at one time I had 13 different food allergies, which encompasses A LOT of different foods (no yeast meant nothing fermented or pickled, no condiments, no vinegar, etc.), I started taking my own meals with me whenever we go to someone else’s house. Also, I would have to know they used the same precautions, etc. that I take in my kitchen and I know that’s not always possible. Do not assume that everyone will cater to you or will do it right. It is frustrating, but not everyone gets it and ultimately, you are responsible for your health.

GETTING GLUTENED

Everyone with Celiac or NCGS recovers from a glutening differently. I rest as much as possible and drink lots of coconut water. Others use activated charcoal. There’s a lot you can do to feel better, but once glutened, it takes 6 months for it to stop affecting you internally whether you feel it or not. This fact is why it’s so important that even if you hear someone else say they didn’t have a reaction to something others are reacting to (like gf Cheerios or Domino’s gf pizza or Omission beer), that you consider it carefully. You will often hear, “Well, I’m really sensitive.” I don’t really buy into “sensitivity.” I think our bodies are all different, thus the different reactions. I used to react between 10-15 minutes after being glutened to several days later (it can take up to 72 hours for any food reaction to surface as symptoms). Now, I have what is called “silent reactions” where I don’t have symptoms but I know damage is being done internally. It doesn’t happen often where I know I’ve been glutened. The most recent was earlier this year when my grocer had poke in the seafood case and I asked if it contained anything with wheat in it and was told no. Bought it, took it home, ate one piece and then waited for Chaz so we could enjoy it together. He discovered the wheat listing on the container that I didn’t double check. Several months later, my nails were brittle and were breaking/splitting anytime time something hit them or they hit a surface.

For a good list of all the ways other bloggers recover after being glutened, please check out this post from gluten-free easily.

If this is the first thing you’re reading after being told you need to be gf, I realize it’s a lot. Like I said in the beginning, don’t panic. Bookmark this to come back to, take a deep breath, go have a cup of coffee (or tea, or cocoa, or glass of coke, juice, water), do some laundry, listen to some music and then come back. All of us who have been gf for a while have been the same place you are right now. It’s okay if you don’t remember everything, we all make mistakes. I even gave you an example of my most recent mistake. Don’t beat yourself up. The best thing you can do for yourself right now is to be kind. You didn’t get to this diagnosis overnight and it will take a while for your body to heal. You might pick up another autoimmune disorder or two, some food allergies, or another chronic illnesss – it’s actually normal for this to happen after decades of your body attacking itself and not having a proper diagnosis. It doesn’t sound great that it’s normal but there are many of us in the same boat or adjacent boats.

You are not alone.

The Jokes Aren’t Funny

Phone 1 488

Accidentally using a soup mug for your coffee is funny. Jokes about the gluten-free diet are not.

There is a rise of gluten-free jokes on social media and on TV and the people telling the jokes and laughing at the jokes appear to have no concept of what it is like to live gluten-free. The fact is most of the general public still views the diet as a fad and that many people go on the diet without any idea of what they are doing or what gluten is just because a celebrity is doing it or a friend told them to do it. The rest of us, the 1 in 133, with Celiac or Non-Celiac Gluten-Intolerance are on the diet for medical reasons. When the jokes are made we are grouped in with the target of the jokes and we don’t find them funny. It’s bad enough we have no control over our illness, but now we are being made fun of for having it. The jokes are gallows humor to us and for gallows humor to work, it needs to be told by those of us living a gluten-free life because of the medical condition, not all the Tom, Dick, and Harrys out there.

It may seem funny to throw out jokes like “I don’t want to talk about my gluten intolerance, said no one ever.” Throwing something gluten-laden at someone with Celiac may garner a laugh on TV, but it’s not a joke for us. Smashing a cake in my face is as funny as throwing peanuts at someone with a peanut allergy. So many of the jokes are laced with a mean spirit, even if they aren’t, that’s how it seems to us because we are living with a serious disease that can affect all of the systems in our body when gluten enters our body.

I do my best to be kind to the joke-tellers when the joke really bothers me and educate them on why we don’t see them as humorous. Sometimes I ignore the jokes because I don’t have the time. But it’s Celiac Awareness Month so this post is for all those joke-tellers out there using gallows humor incorrectly.

Here are some reasons why the jokes aren’t funny:

  1. Many of us spend decades ill and seeking answers before we are correctly diagnosed with Celiac or Non-Celiac Gluten Intolerance. We may talk about our diet more than we might when we see changes. Wouldn’t you after years of poor health? You better believe I was shouting it from the rooftops when my lifetime of “clumsiness” and decades of migraines and vertigo were gone.
  2. Celiac and Non-Celiac Gluten Intolerance are very real medical conditions. They are not made up in our head. Do you joke about other chronic illnesses? Lupus? Fibromyalgia? Cancer?
  3. Our lives change drastically with the diagnosis. We have to read every label on our food, medication, and personal care products before buying them or using them. We have to learn the gluten derivatives so we know when we see them on the labels.
  4. We have to research food options when dining out. You get the entire menu to choose from. On vacation last December, we ate somewhere where I had three. There are times when we go out with people and I have no options and have to bring something with me or wait until after to eat.
  5. Gluten hides and it’s not just cutting out bread, pizza, and baked goods. We have to be careful of soups, sauces, dressings, seasonings, and everything our food could come in contact with when prepared in our own homes or by someone else. Buffets were once my comfort, they are now my worst nightmare.
  6. It is not an allergy, but it is just as serious as an allergy to us. Already with the decades of misdiagnosis we’ve suffered with gastrointestinal, neurological, reproductive, psychiatric, endocrine issues and more. It might not be the same as an anaphylactic reaction, but a fraction of a crumb can take us down for weeks and the internal effects last up to six months.
  7. We can’t kiss our significant other without knowing what they’ve eaten or made them brushed their teeth thoroughly. You can’t “kill” allergens. They can’t simply rinse with mouthwash and everything is a-okay. It does kill spontaneous intimacy because one or both has to be thinking about it so the gluten-free partner doesn’t get sick from a kiss.
  8. Jokes about us not being able to eat anything because nothing is left is completely off-the-mark. You think my options are limited based on what I can’t have and what you feel you could never give up, but you are wrong. I can cook delicious meals with a variety of fresh food. You know, the kinds of meals our ancestors ate before processed foods took over our diets.
  9. Naturally gluten-free foods are fantastic. They don’t taste horrible and just because you go on a “special diet” for medical reasons doesn’t mean you have to sacrifice taste. Joking about tasteless gluten-free food just reinforces a myth to people who might need to be on the diet and build fears about food. When I was working I normally took my lunch to work. Once I had to go gluten-free, I had to take my own lunch. My co-workers always commented on how good my food looked and smelled.

On the NCIS episode “Psych Out”, Dr. Samanatha Ryan (played by Jamie Lee Curtis) fires back at Dr. Rachel Cranston’s (played by Wendy Makkena) joke about lactose intolerance with “It’s a diagnosis not a fad.”

If you remember nothing else, remember it’s a diagnosis not a fad.

An Open Letter to the Catholic Church Leaders

The altar at St. Damien’s in Kaunakai, island of Moloka`i. St. Damien’s is the rebuilt church of the former St. Sohpia’s, where I spent many Sunday mornings with my grandparents and witnessed many family members married there.

Dear Catholic Church Leaders,

I am dismayed that the Catholic Diocese of Columbus (Ohio) has ruled gluten-free hosts are to be banned because they do not contain wheat.  I had this debate with some people in my area about a year ago and it wasn’t pretty.  The Columbus Dispatch reported on this recent ban on June 1, 2012 and included this in the article:

Church law “calls for the host to be wheat and wheat only” because Jesus ate wheat bread with his apostles before his Crucifixion, said Deacon Martin Davies, director of the Office for Divine Worship at the Diocese of Columbus.

This is an antiquated law and the ban does nothing to consider the fact that the young girl in the article who was denied a gluten-free host or the millions of others living with Celiac, non-Celiac gluten intolerance, or wheat/gluten allergies  who are denied the same because we have a chronic illness treated simply by avoiding gluten in everything we eat, drink, and use on our hands and face.  We have no control over this disease other than the precautions we take.  We certainly did not ask for it.  And here we find ourselves being told, “No you can’t have something that will be safe, but you can have something that will make you sick.”

This.  Is.  Wrong.

God gave Moses ten commandments.  I see nothing about wheat in Communion hosts in those commandments.  Okay, so they were before Jesus’ time.  Those laws are things over which we have control and free will to choose to follow or not.  Even God saw the need for change as things change between the Old Testament and the New Testament.   Jesus gave us The Great Commandment.  In my opinion, the best one out there.  Love.  We can choose to show love or not.  Free will again.  

So tell me, where is the love for those of us who have no control over this disease(s) and must live a gluten-free life, yet wish to express our faith through receiving Communion safely?   Other churches (and by churches, I mean different Christian denominations) are allowing gluten-free hosts for communion, and here the Catholic Church stands, antiquated and refusing to budge.  Where is the change that needs to happen when food allergies and intolerances are becoming more widely recognized and diagnosed correctly?  Where is the compassion?

Refusing gluten-free hosts but allowing low gluten hosts is akin to poisoning your congregations members who cannot have gluten.  Jesus meant for the bread he ate to be a symbol, not what everyone has to eat in a recreation of the Last Supper on Sunday mornings.  I know through my faith and love for God that He would not want me ingesting something intentionally that makes me sick just because I was told I had no other choice if I wanted to participate in the sacrament.   Why subject us to man-made laws?  Anyone can discern that this is not God’s will.  This is man’s will, stubbornness resisting change, and a refusal to acknowledge that we are humans with human needs that need to be attended to individually.  This includes allowing gluten-free hosts and a separate wine glass for those who need to be gluten-free.  Just remember God sees into your heart and knows why you make these decisions.  I leave it to Him to judge you.  But, if you are making decisions based on old laws and not what’s best for your people, what really is your purpose?  

If you continue to refuse change and deny basic needs for food safety through Communion, you will lose church members worldwide.  This is not just an American thing.  There are people with these afflictions all over the world.  People will seek God elsewhere in other churches and your pews will be empty.  

Sincerely,

Debi Smith, God-loving human being with Celiac

P.S. – To those of you with Celiac, non-Celiac gluten intolerance, or wheat/gluten allergies, if your church refuses to accommodate your food safety needs in order to take part in communion, find another church that will.