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.

Pissing In The Gluten-Free Cheerios

CheeriosADDENDUM: Since writing this post I started a petition on Change.org as more and more stories of people in gluten-free community kept pouring in. Please sign it and share. The only thing that you have to be to sign this petition is a human being who believes Celiac/gluten-sensitive people should be able to enjoy labeled gluten-free foods safely.

There is so much controversy surrounding gluten-free Cheerios right now. They are all over store shelves and it’s causing a divide. On one side are people who are encouraging people to eat them and eating it themselves. On the other side are people like me who are staying far from them and will never encourage anyone with any type of issue with gluten to eat them.

First, General Mills is mechanically cleaning oats instead of using certified gluten-free oats. This could change based on Tricia Thompson’s (Gluten-Free Watchdog) last conversation in which they stated they were looking to source “some” oats from growers following purity protocol. I quoted some because it’s not all. If you’re like me, if a product containing oats isn’t using 100% certified gluten-free oats, then I put it back on the shelf. My hope is that GM’s will move from some to all.

Second, some of the tests have had results as high at 90ppm. My thought is that if you are making a gluten-free product, the test results should be in a small cluster with an occasional slightly higher result (this is my opinion based on my psychology classes in statistics and methodology). Knowing that there has been one result that high, I don’t feel comfortable…because with my luck, I would get one of those boxes and be sick for weeks. NothanksIlikenotbeingsickallthetime.

Third, just because other people say it’s okay, I never jump on the bandwagon. I weigh the facts and the options carefully. You should too. Just because people say they don’t react, doesn’t mean the gluten isn’t doing damage while they enjoy bowl after bowl of cereal. There are a lot of things we all miss, but I refuse to do more damage to my gut just for something I might miss. I still won’t eat Domino’s gluten-free pizza.

It is a fine line to be in the public eye, blogging and using social media to spread the word about gluten-free living. It would be irresponsible of me to say, “Hey, gluten-free Cheerios are safe to eat because we have those awesome labeling regulations now.” No, it doesn’t work that way, especially with something this controversial and iffy. Research, dig, do due diligence. You owe it to your health (and that of your family if you’re the one making decisions for gluten-free family members) to do so and not just take someone’s word for it who you happen to follow on Facebook or read their blog.

If someone has to use a qualifying statement like, “If you have Celiac or are extra sensitive, you shouldn’t eat/drink this.” IF it is that serious, no one who is gluten-free should be eating or drinking said product. I won’t use gluten-free Cheerios until I’m certain they will be safe for EVERYONE.

Some articles by Tricia Thompson on gluten-free Cheerios:

General Mills “Gluten-Free” Cheerios: Comment from Gluten-Free Watchdog

More Thoughts on Gluten-Free Cheerios

Gluten-Free Cheerios: Take Two

After some discussion on the gluten-free easily Facebook page, Shirley has encouraged everyone saying they reacted to the gf Cheerios to contact General Mills and the FDA. I feel it is important to contact both and not just one. GM needs to know that their product and how they are processing and testing it is not meeting true gf needs. The FDA needs to know that a labeled gf product is making people sick. 

 

 

It’s YOUR Health. What Are You Doing With It?

I’m going on a rant here, so don’t expect anything else but me venting in this post.

Ye have been warned.

My friends and I will occasionally post things on our Facebook blog pages that stir up conversation.  As much conversation as you can have through comments on statuses and links we share.  I’m still seeing people act irresponsibly in regards to their own health and the health of others when it comes to the gluten-free diet.

The debate over the gluten-free Domino’s pizza still rages on.  They still will not change their practices in preparing the “gluten-free” pizza which means it is not gluten-free or safe for anyone who needs to eat gluten-free.  ANYONE.  It is irresponsible for them to claim that it is safe for those with “mild gluten sensitivity” and not those with Celiac.  This has led to people who need to eat gluten-free to order the pizza and because they did not have visible symptoms, they think it’s safe.  It is NOT.  No visible symptoms does not mean gluten isn’t in your body wreaking havoc, because it is.

I say this because a friend made a comment about Domino’s pizza last night on her Facebook blog page.  It was heart warming to scroll down and see people agreeing with her and making comments that support her.  Then it came.  The mothers who are ordering the pizza when they and their child need to be gluten-free.  The people who think we are beating a dead horse by continually speaking up on this topic.   The people who admit to eating gluten or only snacks when on the road because they didn’t plan.  Those who claim that those of us with Celiac feel like we own the term “gluten-free” and that we are dividing the community.

I got angry.  Very angry.

Clearly, people still do not understand the crux of the problem with Domino’s gluten-free pizza is that they claim it is for one set of gluten-free people, but not another and that they refuse to make changes to procedures to make it safe.  They continue to stand by this.  This shows me that they have no interest whatsoever in the health and well-being of the gluten-free community.  Other restaurants that have gotten procedural feedback have either stopped their gluten-free offerings until they can create procedures to ensure a safe meal or they have made the appropriate changes.  Domino’s refuses to change.  Corporate greed at its best.  If you need to be gluten-free and you are eating their pizza, you may as well shoot yourself in the stomach.  If Domino’s changed and we were still discussing this, then we’d be beating a dead horse.

I find it abhorrent that parents are feeding their gluten-free children this pizza.  Parents are responsible for the well-being of another person(s).  Children know what they learn from us.  If you play Russian Roulette with your child’s health, they will do the same as adults.  If you are teaching your child more caution when eating food prepared by others, they will do the same as adults.  Your child depends on you.  Being less than cautious with their health when they have serious health issues amounts to medical neglect and child endangerment.  I’ve seen kids removed from the home for less in my social work years.

Most Western doctors still don’t understand or know all there is to know about the issues related to gluten, yet many people blindly listen to whatever their doctor tells them and considers their word golden.  People take a restaurant’s word that gluten-free really means gluten-free without verifying themselves.  We are responsible for educating ourselves and continuing to educate ourselves on the chronic illnesses that affect us along with the current issues related to it.  If more people did this, they would understand that this is not a Celiac versus gluten intolerance issue.  It is a globally gluten-free issue.  This affects those of us with Celiac, non-Celiac gluten intolerance, and wheat/gluten allergies.  This needs to be us versus those that pretend to be well-meaning and refuse to change our ways, not us versus us.  A house united will not fall.

Planning is a part of keeping ourselves educated.  I have planned meals for years.  Even before going gluten-free.  I planned food for our road trips.  Nowadays, I need to plan for pretty much everything.  It is part of my personal responsibility to keep myself healthy.  Planning when away from the home is essential for all of us.  In recent months I’ve heard about people starving in airports because a flight was delayed and there was no safe food around.  I mean really.  Who goes to an airport without their own food when they have food issues?  Chaz made fun of me last November when I was packing for our first plane trip since I went gluten-free.  He did it all in fun, but I had a lot of food both in the suitcase and our carry on.  I was prepared for any delay.  Going on road trips means even more planning and making sure I have a gluten-free meal packed for us that we can eat at a rest stop when we get hungry and healthy snacks like hummus and veggies that we can eat in the car.  If you are relying on convenience store food and greasy spoons to feed you along the way, safely or unsafely, you aren’t taking your health seriously.

Those of us who keep ourselves educated, stay vigilant about current issues, and plan have taken our health in our own hands and ensure that we stay healthy and safe.  There is no safe for some of you and not safe for the others in our minds.  “Mostly safe” is not acceptable for us.  Restaurants that refuse to change their procedures knowing they aren’t safe and continue on their path earn our disdain because we know better.  We continue to advocate for those who are new to our diet and even for you, if you are one of those I mentioned.  We don’t do it because we feel we know better.  We do it because we feel it is our duty to ensure safety for all.