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.

Fighting to Persevere

I’ve mentioned how poorly I was feeling before.  Here and on social media.

I downplayed it.  If you know me, you know I tend to downplay things.

I was at the point where I was counting spoons to see what I could and couldn’t do through my day.

I called off work one day a few weeks ago because I woke up in the middle of the night in pain and wasn’t able to get back to sleep.  Nor was I able to stay standing while fixing my breakfast.  I didn’t have the spoons for the day.  I took the max dose of ibuprofen (800mg) after calling in and went back to bed.  I spent the better part of that day and the next doing nothing but laying on the sofa with my feet elevated.

Just the day before one of my managers was telling me I needed “to get healthy” because there was a big load of work coming up.  The irony is I’m probably the most health minded person there even if I’m not healthy right now.  I had these reactions running through my head when he told me I needed to get healthy.

Are you fucking kidding me?  Do you realize who you’re talking to?

I’m never going to be healthy here. 

You selfish bastard. 

I just want off my feet! 

Stop talking already! 

Let’s go back to “I’m never going to be healthy here.”  When I realized how true that statement was, I knew something had to change.  Either I get to the root of this problem and figure it all out or I quit my job.

I kept all this in mind for my doctor’s appointment.

Pain, inflammation, heart palpitations, problems sleeping, mood swings, fatigue, being so tired I was falling asleep on the sofa if I wasn’t vertical, feeling like I re-sprained my wrist.  I thought that my thyroid was going haywire.  I was at the point that I felt like I was hitting the same rock bottom that I hit before.   I was crying because I felt so horrible, yet I kept pushing myself to do more than I should have and still not give in.

My life was like this again…

The Saturday before my appointment, I was awake mega early again due to pain.  This time along my pelvic bone on the left side.  This was new.  I couldn’t go back to sleep and I eventually got up and started my morning routine.  When I got to work the same manager that told me I needed to get healthy was asking me how I was doing.  I told him, “Not well.”  Then I explained being woken up by pain when he asked.  “Are you going to the doctor today?” he asked.

At this point it was creeping towards noon.  My doctor is not in on Saturdays.  I probably could have driven myself to an ER instead of work that morning, but I was trying to hold out.  I was incredibly irritable from lack of sleep, pain, and generally just tired of being sick all the time.  It took all I had to not just reach out and give him a wake up smack.  He is a really nice guy when he’s not so focused on the bottom line, but I knew he was thinking in the back of his mind, Oh no, we can’t get even more shorthanded so close to the holidays.

I started thinking again, I’m never going to be healthy here.

You might be wondering, then why not quit?  That’s the easy thing to do.  I’m a person who feels bound by loyalty.  I am not bound to the corporation.  I am loyal to my co-workers and my team leader.  If it weren’t for the ones that make it worth being there and laughing with, I would have left long ago in search of something else.

I went to my doctor last week Tuesday, starting with my chiropractor and moving on to my integrative doctor.  I didn’t rush through my progress note to my doctors to let them know what is going on.  In previous months, by the time I saw them, I wasn’t feeling nearly as bad as I had this last month or even as bad as I did when I went in after being off work for nearly 48 hours.

For the first time my neck adjusted better than it had in months.  I have a stiffness that settled in months ago and would not adjust for anything.  Normally, my chiropractor jokes about me starting without him as things start popping back into place while he’s getting me into position for the adjustment.

My doctor sat with me and reviewed everything I wrote down.  We went over the Stress Chart they have in every room and discussed where I was on the chart and the cause of my stress.  Work.

My wake-up call

I never thought I’d hear the words, adrenal fatigue, coming from a doctor of mine and directed at me.  But, it explained everything.  It explained why my plantar fasciitis was getting worse no matter what I did to help it along.  Icing my feet after work, stretching them out, rolling them over golf balls.  My feet were just getting worse and worse.   I thought the inflammation was what was driving everything.

If you aren’t familiar with adrenal fatigue or even what your adrenal glands are or what they do, let me do a quick summary.  Your adrenal glands are responsible for releasing epinephrine, norepinephrine, and cortisol when you are under stress.  Epinephrine is also known as adrenaline.  In my case, my adrenal glands were working overtime to pump out cortisol while at work because of the stress I was under.  This resulted in my cortisol levels being all over the place rather than high in the morning and steadily dropping throughout the day, which explains the sleep problems.  When there is too much cortisol running through your body, your body turns on the inflammation response and poof…inflammation!

I never plan anything after my appointments with my chiropractor and integrative doctor.  I don’t want to completely undo everything they just did and I want my body to be able to accept the adjustment and acupuncture and get maximum benefit.   I spent the rest of Tuesday on the sofa.  As my body adjusted, I felt more and more exhausted.  I just wanted to sleep for months.  Or at least sleep until I was better.   I think getting an answer gave me finality and my body just wanted to shut down and say, it’s okay now, let me do the work to make it better.

I felt the same the next day, but slightly less irritable.  Baby steps.

I talked to the manager responsible for my scheduling, who happens to be the one who told me I need to get healthy.   I explained my diagnosis and that I needed my hours cut as I recover.   He agreed to meet my needs, which I fully expected.

By Friday, I was feeling light at work.  Less stressed.  I kept my focus on my tasks and if I happened to get called away to answer a call on the other side of the store, or get carts outside, or help at the registers, I went without all the negative thinking in my head that fed the stress.

Baby steps.

Here I am, Monday.  I’m still sleeping like crap.  I was awake well before I needed to be this morning.  I laid in bed for a while before finally getting to it.  Grocery shopping.  Housework. Yes.  I finally cleaned today.  I still have clutter going on, but I cleaned my bathroom, swept, mopped, vacuumed, and dusted.  Still baby steps, but it was something I couldn’t do a week ago today.

I’m moving forward and moving slowly.  I’m running on my time and to the beat of my recovering drum.  I’m reminding myself not to push myself too much or too far.

I persevere.

Living In Recovery

All roads lead to Normal. Or is that from Normal?

I went through several months after being diagnosed with hypothyroidism of the thought, this is my life.  My life was dragging my heavier self out of be for work and crawling right back into it when I got home.  I was still looking for answers as to why I was feeling worse after my diagnosis even though the Synthroid seemed to be doing what it was supposed to.

It was several months later when I was off the Synthroid and feeling better that I had an epiphany while at a training for work.  On recovery.

While the focus of the training was about recovery for those with mental illness, I was struck by similar feelings with a chronic physical illness.  I was living in the stage of allowing myself to be defined and limited by my diagnosis.   I put myself in a box and kept myself there, still thinking, this is my life.  I was resigned to living a life in which I was not 100% healthy.  That is who I was.

It’s not who I am anymore.

In mental health, recovery is enabling clients with mental illness to live life in their community to their fullest potential.  In a nutshell. Many people receiving mental health services have no idea there is a better life after diagnoses than the life they are living.  Most of them have never even heard of recovery, unless you’re talking about substance abuse, and that’s a whole different beast right there.

The stages of recovery are as follows:

  1. Handling the impact of the illness
  2. Feeling like life is limited
  3. Realizing and believing that change is possible
  4. Commitment to change
  5. Actions for change

I was stuck in the second phase for a few months.  No one ever said anything about how life could be better after my diagnosis other than, “The Synthroid will work.  Just give it time.”  Well, 6 weeks after first taking it and I’m feeling worse, I kinda felt it was all a sham.  I knew it wasn’t because it was people I knew who dealt with the exact same thing telling me this.   However, when you’re at rock bottom, you think the worst and you get stuck thinking that this is what the rest of your life will be like.

Once my Naturopath discovered the Synthroid was causing problems and I was off of it feeling better, I was still thinking, this is what life is like.  Taking supplements every day to keep my thyroid going and dealing with symptoms as they liked to surprise.  Hello, Migraine, my old friend.  Vertigo, nice to see you again.  Heart Palpitations, you scared me.  During this stage is when people tend to define themselves as their diagnosis.  Schizophrenic.  Celiac.  Gluten intolerant.  I worked with many clients who would introduce themselves and then go right into, “I’m Bipolar.”  But they were so much more than the diagnosis.

It was during the training that I started realizing, things really can change.  Why should I live in box under the misguided belief that my quality of life would never be better? Why should I have to deal with symptoms for the rest of my life?   I am not Hypothyroid.  I have Hypothyroidism and the symptoms love to plague me.  That was my thinking from that day on.

I began digging.  And digging.  And digging.  Friends did some digging.  I did more digging.  I made changes.  Many changes.   During the holidays, too.  Probably the worst time of year to make dietary changes, but I did pretty well following a whole foods diet.  I allowed myself a little of everything at Christmas and I was back to business.  I was determined to be more than a hypothyroid, which meant doing all I could to help support my thyroid through whole foods, less medications, and eliminating as many toxins in my environment as possible.

Then I discovered my problem with gluten a few months later and while I first grieved the loss, I was happy with how much better I felt 6 weeks after being off gluten.  I had never felt so healthy.

Part of moving out of the second stage and into the last stages is to stop defining yourself as your diagnosis.  Whoever you are reading this, you are not your diagnosis.  You just happen to have some kind of chronic illness that has to be managed by diet or diet and medication.  Start using person first language with everyone, including your doctor(s).  If you don’t know what person first language is I’ll give you an example.  I have Hypothyroidism secondary to either having Celiac or gluten intolerance, and I happen to follow a gluten-free diet.  Put yourself first to remind everyone, including yourself, that you are a person and not a chronic illness(es).  The same goes for family members or friends you may be helping.  They are not Celiac or gluten intolerance.  They have Celiac or gluten intolerance.

Using person first language takes the focus off the diagnosis for everyone.  Yes, knowing the diagnosis and how to live with it is important, especially for recovery.  But, to move forward and be able to live our best lives possible, we cannot focus solely on our diagnosis(es).  A quality life includes going out with friends, socializing, engaging in the activities we loved before getting sick or even finding new ones.

It’s time to live in recovery if you aren’t already!