Places that gluten hides

April 18, 2014

The other day I wrote about how thanks to gluten’s many hiding places, I continued to consume it even after I thought I was gluten-free. There are many places online to find gluten’s hiding places, but it’s hard to come up with a list that makes sense for me. Some things from those lists are relevant and some aren’t, so I decided to make my own list.

Use this list however you want. I’m making it for my own reference, but I hope it helps others. If you don’t have a gluten intolerance but you sometimes cook for someone who does, please be sure to consider this list. And please please please comment with anything you think should be added! Thanks!

Some unexpected places that gluten hides (gluten-free versions can often be found if you look for them)

  • soy sauce
  • lemon juice from concentrate
  • lipstick
  • chapstick
  • sunscreen
  • chocolate
  • salad dressing
  • sauces
  • broths and bullions
  • hand lotion
  • medications, both prescription and non-prescription
  • cooking spray
  • dish detergent
  • liquor
  • oats and oatmeal unless they’re specifically marked gluten-free
  • toasters and toaster ovens where gluten breads were toasted
  • wooden cutting boards and utensils that used gluten
  • oil in restaurants that has been used to fry gluten items
  • rubber dish gloves

Some other terms for gluten (from a handout my nutritionist gave me and an informational email from a body lotion company)

  • atta (chapatti flour)
  • barley (flakes, flour, pearl) or any ingredients containing the genus species name Hordeum Distichon
  • beer, ale, lager
  • breading and bread stuffing
  • brewers yeast
  • bulger
  • communion wafers
  • couscous
  • croutons
  • dinkel
  • durum
  • einkorn
  • emmer
  • farina
  • farro or faro
  • fu
  • graham flour
  • hydrolyzed wheat protein
  • kamut
  • malt, malt extract, malt syrup, malt flavoring
  • malt vinegar
  • malted milk
  • matzoh, matzoh meal
  • modified wheat starch
  • oatmeal, oat bran, oats (but it’s possible to get gluten-free oats) or any ingredients containing the genus species name Avena Sativa
  • pastas
  • rye bread and flour or any ingredients containing the genus species name Secale Cereale
  • seitan
  • semolina
  • spelt
  • triticale
  • wheat or any ingredients containing the genus species name Triticum Vulgare
  • wheat bran
  • wheat flour
  • wheat germ
  • wheat starch

What other places have you found gluten unexpectedly? What other names does it hide under?

So much for “gluten-free”

April 13, 2014

Back in February 2012 I thought I was going to stop eating gluten. As it turns out, what I did was stop intentionally eating gluten. I was still consuming it, though.

In my first year being gluten-free I avoided the obvious sources, like breads and pastas made with wheat flour. I also went online to figure out some of the less obvious sources of gluten to avoid, like soy sauce, lipstick, chocolate, salad dressing, and chicken broth. I found gluten-free versions of all of these, and I thought I was doing pretty well.

Then in the second year, I was horrified to realize how many other sources I hadn’t considered, like sunscreen, hand lotion, cough syrup, lemon juice, cooking spray, vitamins, and dish detergent. Oops!

Now I’m at the start of my third year, and I’m still learning. There are so many areas to consider. Yesterday I reviewed relatives’ recipes they were using for a big family dinner. Hours later it occurred to me: I hadn’t asked about cooking spray. And it’s a good thing I asked, because one person was going to use a type that I couldn’t have. She’s kindly using butter instead.

There are a lot of sources online that list areas to watch out for, but some are incomplete and it’s hard to remember them all. I have a list of food allergies in a Google Drive document so that I can share it with friends when they want to cook for me. I think I’ll make a list of hidden gluten sources on there, too. That way, I won’t have to worry about forgetting to mention something – I can just look at the list!

Where have you found gluten that you hadn’t expected? How have you kept track of all the places it hides?

Speaking the CI language

April 11, 2014

I remember the first day of my last job. Everyone was throwing around acronyms I’d never heard before, and I had trouble just following the basic line of the conversation. I asked around for a list of these acronyms, but there wasn’t one. I immediately started creating a list of my own. When someone new was hired the next year, I gave them a copy of my oh-so-valuable list.

Every group has their own language. Whether you’re discussing race, illness, sexual orientation, gender identity, ethnicity, sex, a job type, a career type, an industry, or anything else, you use certain vocabulary that the general population won’t understand. You have your own terms and abbreviations. Sometimes they’re obvious and you’re aware of them. But sometimes they’re less obvious.

I often forget about the CI (chronic illness) language. Sure, my CI friends know that PT means “physical therapy,” or sometimes “patient,” but the rest of the English-speaking world doesn’t always make that association. We know what a spoonie is. We throw around SSDI (social security disability insurance) and LTD (long term disability insurance) as if everyone knows those acronyms. We talk about medications, insurances, different types of pain, and legal issues in our own vernacular.

It doesn’t happen overnight. You don’t wake up one day knowing these terms and phrases. But bit by bit, it’s easy to pick them up. Within the hypothyroid community I assume everyone knows about TSH, T3, Anti-TPO, and the other thyroid hormones and antibodies. It’s just assumed. At first I was confused, but now those terms are just as familiar as “dogs and cats.” We experience something unique to us, and it’s so useful to have the vocabulary to discuss it with others.

This struck me today. I was in a room of CI folks, with one non-CI person, and we were trying to explain how our lives have been changed to that one person. I noticed people using words that he didn’t understand, and I caught myself trying to change my terminology to be more mainstream. Later, when it was just us CI folks again, it was so great to speak however we wanted and to really understand each other. There’s something really awesome about that. It felt easy and familiar. It helps us to bond.

The language isn’t perfect, but it helps us to understand one another, and that’s what’s important. So the next time you have the chance, I highly recommend that you visit a patient group or check out the patient communities on social media (personally I’m involved on Facebook as me and on Twitter as @CIRants) to learn the phrases they use. Then enjoy it! There’s something great about being able to communicate with others in our group in our own way and we need to make the most of it.

A day off means something else when you have a chronic illness

April 2, 2014

For most of my life, “a day off” meant a weekday that I didn’t go to work or school, wasn’t in bed sick, and could do whatever I wanted.

About a dozen years ago I took “a day off” for the first time that didn’t involve any travel. I didn’t go to work, I got extra sleep, I took the car in for some work that needed to be done, I cleaned the apartment, and I indulged in some hobbies. By the end of the day, I felt fantastic – rested, relaxed, and productive. I remember it so well.

These days “a day off” is a completely different animal. For one thing, I’m not in school or working at a job, so that’s not relevant. Instead, I spend a lot of my time dealing with health issues. I can never get away from my health problems; those are and will always be with me. I can almost get away from some of the logistical issues, though. And I can ignore the “to do” list that needs doing.

I woke up feeling horrible. I’m more exhausted than I have been in a while. So many muscles ache that don’t usually ache. I woke up not wanting to do anything. Luckily for me, I didn’t have anything scheduled today, medical, social or otherwise. So I decided to take “a day off.” There’s so much I should be doing, but I’m not. I should be making phone calls to find a therapist. I should be dealing with a form from my lawyer. I should be doing laundry. I should be changing the sheets on my bed. I should be taking a walk on this rare sunny afternoon. I should have put food in the crockpot this morning. I should be getting a long-overdue haircut. Doing even two of these things would make me feel very productive, but instead I’m not doing any of them. No, instead I’m taking “a day off.”

Here’s what I have been and will be doing:

  • Took a shower at 4pm. I put it off as long as I could, but in the end I felt sort of gross and decided it was worth it.
  • Emailed with some friends (but ignored all of my other emails.)
  • Fill my pill boxes for the week. I do this every Wednesday. I don’t want to do it, and I’ve been putting it off, but it really has to be done today.
  • Watched tv. Will watch more tv.
  • Read my book. Will read more.
  • Knitted. Will knit more.
  • Writing this blog post.
  • Ate leftovers. Will eat more leftovers
  • Will wash dishes. Because there’s no one else to do it.

I haven’t decided yet about my physical therapy exercises. I should do them, but I’m just so tired, and they take so much effort, and it’s my day off, so I don’t want to even think about it. But I know I need to.

So at the end of today, I won’t feel rested, relaxed, and productive like I did that day 12 years ago. But maybe I won’t feel any worse than I did when I woke up this morning. If that happens, I’ll consider it a successful day.

Is remission possible?

March 28, 2014

I saw my naturopath yesterday and she surprised me with one of her goals. She said that she wants to get me to believe that once I’m better, I’ll stay better, and that I won’t relapse. That had never occurred to me. [As a side note, I'm very impressed that she picked up on this mindset of mine and chose to address it head-on.]

Several friends and family members keep insisting I’ll get better. I keep trying to explain to them that I’ll never be 100% healthy. I’ll always have some symptoms, and I’ll always have these medical conditions. These are lifelong diseases that won’t ever go away, and I’ve accepted that. The best I can hope for is to go into remission, which I’ve never really thought of as a possibility for me, though I know it’s a possibility in general. As for symptoms, my gastrointestinal problems are almost entirely better and my fatigue has been improving, but I think I’ll always be at risk of those returning, and I’ll certainly continue to have pain. Maybe the pain can be reduced, but no one has suggested they’ll be able to get rid of it completely.

I’ve accepted all of that. I’m ok with that. If we could just get rid of my fatigue, I’d be ecstatic! But what my naturopath said really stopped me in my tracks. This whole process has been so traumatic. The symptoms, their impact on my life, the insurance issues, the uncertainty over my future, have all changed me. There are some good changes, like a new appreciation for the little things in life, and a desire to keep my life simple, without the “busyness” that so many people take pride in. I’m glad to have come to these realizations.

But there have also been some bad changes, like more fear. I’m scared to spend money, because what if I can never earn money again? And even if I’m able to work, what if I get sick again and need it for that? I’m scared I’ll never find a life partner who can handle all of my health issues. I’m scared I’ll be a burden on my parents. I’m scared to make plans for anything big (tickets to a show, a small trip out of town, attending a wedding) because what if I have to cancel at the last minute? And if I do get better, what if I get sick again? Will I have the strength to go through this all again. And what if I never improve in the first place?

I think that all of these fears are natural. I also think I have to get rid of them. My naturopath is right: if I’m going to have a goal of feeling X% better, then when I reach that goal, I have to trust that I’ll stay there. I’ll need that mental attitude to propel me forward. Sure, I might have setbacks. In fact, she agreed that I probably will have them. Then medications will be adjusted and I’ll improve. But she thinks there won’t be many and that they’ll be short, just a few days or a few weeks; not months or years.

I want to believe that. I do. Really. But I can’t. Not yet. After the trauma I’ve experienced recently, I’m just not ready. But I’m working on it. I love the idea. I hope she’s right. So when I eventually get a therapist (I started looking for one recently) I think this topic will be at the top of our agenda.

Wondering why I feel good

March 22, 2014

Today is my third good day in a row! The first was actually really great. Sure, I’m still in pain, and I don’t have as much energy as most “healthy” people my age, but I’m still loving how much better I feel! The question is, what’s causing it? I want to know the cause so maybe I can make it last! Here are my current thoughts:

  1. It’s my new medication. I started the new med exactly 3 weeks before my first good day. The problem is, usually good effects are felt within the first few days on this med. The changes are right – it’s my energy that’s improved, and that’s what I’d expect from this med – but the timing is off.
  2. It’s the medication I stopped taking. At my doctor’s suggestion, I stopped taking a medication two and a half weeks ago. Since the new med hadn’t had an effect yet, I wasn’t to worried about doing both so close together. I wouldn’t expect it to have this effect, but maybe it’s an indirect cause.
  3. It’s the supplement I stopped taking. I stopped it about a week ago when I realized my most recent gastrointestinal problems started just after I added in this supplement. Two days later, my gastro problems were mostly gone, and the third day everything was as it should be. That alone wouldn’t make me feel this good (my gastro problems were fixed for months before I started that supplement, and I didn’t feel this good then) but maybe in combination with something else it’s helping.
  4. It’s daylight savings time. I have seasonal affective disorder, so I always get extra happy and more energetic when we have the extra hour of daylight. The thing is, DST started two weeks ago, and I usually feel the effect within the first couple of days.
  5. It’s a fluke. This is an odd coincidence. Usually when I have a random good day it’s just that: one good day. Not three. But maybe this is just a longer fluke.
  6. Maybe it’s something else I haven’t even thought of yet.
  7. Maybe it’s a combination of all of the above.

Some of you might wonder why I’m not considering my new CPAP machine, and that’s because I only started it last night, two days after I started feeling so much better.

Right now, #1 seems the most likely, but the timing of it just doesn’t fit. But maybe there was so much damage done to my cells, that it was just delayed in taking effect. And my doctor did say it could take up to a month. I didn’t believe him based on all of the research I’d done and what other patients said, but maybe he was right. It’s odd that I’d have felt absolutely nothing for the first 3 weeks, though, instead of a more gradual improvement. But nothing else fits as well. It’s probably that with the other things added in. I just really, really, really hope it’s not a fluke! I’m loving this feeling so much, and I don’t want it to go away! I haven’t felt this good in many months, maybe even a year or more. It’s not like I feel “healthy,” but I sure do feel a hell of a lot closer than I did four days ago. I feel like I can do more so I’m trying to do more without overdoing it. I also feel that I’m thinking more clearly, so I’m reading more and getting more out of it. I feel happier, but I guess anyone would if they saw a spark of hope after feeling so sick for so long. Still, I’m just nonstop happy.

I guess there’s only one thing I can do for now: enjoy it while I can! I’m taking walks each day. I spent more time out with friends today than I normally would. I’m still not going to the party tonight that I had already been planning to skip. Right now I feel up to it, but I don’t want to overdo it. I’m reading more. I’m trying to catch up on insurance paperwork. And mostly I’m just appreciating this feeling of being more alert. It’s not perfect, but boy, I’ll take it!

Why do folks focus on a treatment’s potential problems?

March 19, 2014

I mentioned in my last post that I’m going to start using a CPAP machine soon. It’s used for sleep apnea, which isn’t too uncommon, so most people know someone who has tried one, or have tried one themselves. It was just a small note that had little to do with the main point of my article, but still, I noticed that no one commented on it, even though they commented on other parts of the article. I noticed it because that’s not what’s happened with my in-person interactions lately.

I can’t criticize people for commenting on other’s lives, because I do it too. Actually, I probably do it more than most people. But there’s a big difference between commenting and pointing out the negatives. What’s even worse is that in this case, people are pointing out negatives without offering solutions. So why are they doing this?

For years now I’ve been fatigued. I’m unable to work. I barely date. I miss all sorts of social events. I feel lousy. Now we discover that I have a form of sleep apnea and a CPAP machine could help. There’s no guarantee, of course, but it might help, so why on earth wouldn’t I try it? In fact, I’m excited to try it! That’s why I’ve already mentioned it to quite a few people, and why I’m so annoyed that almost every single time, the response has been to point out potential problems with it. They tell me about a friend who was bothered by the noise, an ex-lover whose skin was irritated by the mask, an acquaintance who got tangled up in the cord. They tell me about these problems and I don’t know why. Are they suggesting that I shouldn’t even try it because one person they know had a problem with it? Are they suggesting that I continue to feel horrible and not even attempt to fix it because I might be inconvenienced?

Well let me tell you, I’m already inconvenienced. A lot. And I’m not about to let worry about some little inconvenience stop me. If that was the case, I wouldn’t have changed my diet and I’d still be feeling nauseated all day every day. If that was the case, I wouldn’t have changed my thyroid medications and found the improvement in energy levels that I have. If that was the case, I never would have done my own medical research. If that was the case, I wouldn’t have improved at all over the last 2+ years.

Today I emailed my family and friends with a health update. I do that occasionally. When I mentioned the CPAP machine, I included this:

“Note: Please do not tell me how terrible CPAP machines are. Just don’t. Almost every person I’ve mentioned this to has told me they don’t work, they’re loud, they’re ugly, they’re uncomfortable, etc. If I had a gas leak, would you tell me not to fix it because of the hassle of calling the gas company? If I had cancer, would you tell me not to get chemo because of the side effects? No? Ok, then please don’t say anything negative about this medical treatment unless you’re also telling me how to fix said problem.”

So far, I have received only positive or neutral feedback. They’ve congratulated me on taking this step. They’ve said that they hope it works. I got one story of a friend who was helped by it. So from now on, when I tell people about the CPAP machine, no matter how well I do or don’t know them, I’ll preface it with that paragraph. It may be rude, but I don’t care. Taking care of my health is the hardest thing I have ever done, or probably will ever do, and I don’t need the “help” of negative feedback from ignorant people.

Oh, and by the way, I’ll get the CPAP machine in just two short days! Yay!

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