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?

Edit: Four months after this was originally published, I’m now adding a new hidden source of gluten that I had missed before: kissing! Watch out for kissing someone who just ate or drank gluten-containing foods or liquids, or who might be wearing gluten-containing chapstick or lipstick.

Edit 2 (12/19/14): After all this time, I’m still finding more hiding places for gluten. Check out this list of dental considerations, including floss and the powder on your dentist’s gloves.

Edit 3 (12/23/2014): Oh boy, here’s another list of places gluten hides. There are so damn many!

Edit 4 (10/26/17): This is a fantastic list of places gluten hides, and it even included a couple of things I didn’t know. I thought that by now I knew them all, so this both amazed and worried me. Still, better to know than to not know!

Edit 5 (7/14/18): Gluten hides in a lot of non-foods that are still super-important to check. Here are ingredients to watch out for in lipsticks (and links to gluten-free lipsticks, which I’m finding very helpful today!) Here‘s a list of ingredients to watch for in hair products like shampoos and conditioners.

13 Comments | Educating, Frustration, Gastrointestinal, Healthcare, Medication, Symptoms | Permalink
Posted by chronicrants

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?

3 Comments | Educating, Frustration, Gastrointestinal, Healthcare, Limitations, Medication, Rants, Unpredictable | Permalink
Posted by chronicrants

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!

11 Comments | Expectations, Fatigue, Healthcare, Medication, Milestones, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Hormones going haywire

March 12, 2014

It started like any other day. I ate, read, dressed, ate again. I went to an appointment. And that’s where it started getting weird. A medical practitioner was pushing me to open up about some things that I usually don’t talk about and I got a bit teary. Ok, that’s not too unusual for me. Then I started crying. That’s a bit odd. Then when I left, I sobbed uncontrollably IMG_20140312_153843for a while. That’s completely out of character.

What was going on? I called a friend and we chatted for an hour. Usually I find crying to be cathartic, so after crying and then talking to a close friend, I should have been feeling much better. Instead, I continued to feel overwhelmed, ashamed, and depressed. When I was still feeling that way at 10pm, I knew something was wrong. When I woke up the next day still feeling that way, I knew there was definitely a problem. Luckily, I quickly figured out what it was.

About 8 or 9 years ago, my endocrinologist put me on natural replacement progesterone to help my PCOS (polycystic ovary syndrome.) This worked out fine for a bit, but then about 5 or 6 years ago I started having PMDD (premenstrual dysphoric disorder.) My doctor had me change birth control pills. It took some time, but we finally figured out what worked. Over time that’s changed, and each time I had to deal with a roller coaster of emotions when PMDD reared its ugly head. Most recently we found that taking half a pill of a certain brand was perfect for me, and of course I continued with the progesterone, too.

With all these hormones, you’d think I’d have regular periods, right? Well, I did for a while. But then recently I was only spotting at that time of the month. Then I didn’t get a period at all. Hmm. There are a couple different things that can cause this, and the only way to find out what’s happening without going off my meds is to do a pelvic ultrasound. Obviously, I don’t want that. So I’m took a leap and went off my meds.

The first 7 days were fine. But then on day 8, when I found myself sobbing, I should have known. On day 9 it was obvious. And now, on day 10, I’m doing much better. Then again, I’m in too much pain to be thinking about anything else anyway. And while being so overwhelmed and depressed felt horrible, it’s a relief to know I won’t be feeling that way long term. If it continues, I’ll just go back on the hormones.

I’ve always been so grateful that I don’t have depression as one of the symptoms of my illnesses. There are usually two types of depression, at least that I know of. One type is a physiological matter. Brain chemicals are off, or the cells aren’t absorbing hormones, etc. The second kind is what you’d expect from someone suffering from daily pain, spending days stuck indoors, unable to work, unable to socialize, etc. I do have that second kind sometimes, but it’s not too severe and it doesn’t last too long, usually just for a couple of days when my physical symptoms are at their worst. I’ve been so grateful for that. And then the other day was a reminder of what I could be dealing with.

And that makes me wonder how many people, especially women, are in the same situation I could have been in. How many are put on antidepressants, when some added estrogen is all they need? How many women spend years in therapy without improving, without realizing that their symptoms get worse approximately every 28 days? How many women and men see a psychiatrist when they should be seeing an endocrinologist? Maybe the answer is that only a few are affected this way. Maybe it’s a lot. I have no idea if this has been studied are not. I just know that a lot of patients fall through the cracks in other areas, so it wouldn’t surprise me if it happened here, too.

I have fallen through many, many medical cracks. Anyone following this blog for a while knows a few of them, but I doubt I’ve even covered all of them at this point. For example, a specialist seeing me for something else once suggested I could have PCOS, but wasn’t allowed to treat me for it because of HMO rules. My own doctor didn’t address it. It took another 7 years for me to actually get diagnosed and treated. I’m so glad I didn’t fall through the cracks with the PMDD and depression. I just hope the medical community doesn’t let it happen to others.

2 Comments | Educating, Frustration, Healthcare, Limitations, Medication, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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