Making the good days into great days

June 25, 2014

It’s been one hell of a week. There’s a lot I could write about, both good and bad. I choose to focus on one of the better parts of the last week.

They say old friends are the best friends. I don’t know if that’s true for everyone, but it is for me. I have a lot of wonderful friends, but the ones I’ve known since childhood are just amazing. Part of it is that we’ve known each other for so long. We’ve seen each other through sicknesses, marriages, children, graduations, job changes, big things, small things, and everything else. Part of it is that they just happen to be really wonderful human beings. And the other day we were all in the same place, at the same time.

We don’t have many reunions. It’s gotten harder as everyone has had kids. I can’t imagine how much harder it will be if more people more away, or if people move farther than driving distance. It had been over a year, and we were so excited to see each other! As my mother said when she saw the photos, “The smiles on everyone’s faces just says it all.” She’s right.

I was nervous about my health leading up to the reunion. In general I was worried about how I’d feel in the heat of late June (though everyone agreed to keep the party indoors in air conditioning if I needed it.) More specifically, as the time came, I was feeling particularly lousy. I got incredibly lucky with the weather; not only was it an unusually great June, but the days leading up to our get-together weren’t hot or humid, and the days of were good, too. That helped a lot. Still, I felt horrible for other reasons. I won’t give the full back story here (like I said, I’m focusing on the good things,) but basically there were adrenal problems that triggered all sorts of symptoms and my supplements just weren’t doing the trick.

If this had been any other gathering with friends, I would have simply cancelled. But I’d been looking forward to this for many months and I wasn’t about to miss it! So for two days I ate very little, I took extra adrenal supplements, I adjusted my sleep patterns, and I just pushed through. I felt lousy, but I hid it the best I could. Everyone knows about my health issues and they are the most supportive friends I could ask for. But just once, I wanted to have conversations that didn’t even touch on my health. So I hid how I felt. And I had a great time. I had so much fun with my friends, that I was able to ignore my aches, pains, nausea, and the rest for most of the night and the next day. I got down on the ground, I held babies, I fetched things for others, and I faked it til I made it – and it worked!

Pushing through sometimes works for me, but it’s rare. Very rare. Incredibly rare. I-can-count-it-on-my-fingers rare. But if it’s going to happen just once, I’m glad it was for those days. They were just fantastic. I couldn’t have asked for better. And I’ll be holding on to those memories as I anticipate our next reunion. Hopefully I won’t have to wait another year! And hopefully I’ll feel ok.


In search of chocolate and reasonable customer service

June 3, 2014

The thing about avoiding gluten is that it isn’t always obvious where the gluten is hiding. I do web searches, but often there’s no clear indication about the product I’m searching, or there’s something clear but it’s 5 years old. Sometimes a product is well labeled, but often it isn’t. And that brings me to my two-day search for chocolate chips.

A different cake made by my aunt

A different cake made by my aunt

Chocolate itself usually doesn’t have any gluten-containing ingredients (though there are exceptions.) However, flour is often used on conveyor belts to prevent sticking, and that means that the chocolate isn’t actually gluten-free. If the chocolate package isn’t labeled, then, how do you know? The answer is that you call the company.

I decided not to have a birthday cake this year. Just having a party will be exhausting enough and I didn’t want to have to worry about stopping at the gluten-free bakery that day. I didn’t mind. Well, not too much. Then my aunt offered to bake me a cake! She’s always been so considerate of my food restrictions, and she’s one of the few who I trust to cook or bake for me.

The other day, with my party fast approaching, she emailed me a list of ingredients. She said she wanted to use Ghirardelli chocolate chips. Yum! I could find the info on the web site, so I called the company 6 times and each time I heard the same message about how no one was available and I should leave a voicemail and it would be returned. I left a message, but it was never returned. Not helpful.

With Ghirardelli not an option, my aunt suggested Callebaut. Again, the information I needed wasn’t on the web site. The first time I called, I got a message about how no one was available, etc. I didn’t leave a message. When I called later, I got a human being – success! Or so I thought. She needed a product number. When I said I didn’t have one, she said she couldn’t help me because they have multiple products. I asked her to tell me which of their chocolate chips are gluten-free, even if it’s more than one, and she said she couldn’t do that. Well, I’m not about to spend hours standing in a store aisle calling customer service numbers where I may or may not reach someone and reading off product numbers! That’s a #customerservicefail if I ever heard one!

Finally, my aunt said she could use Nestle, though it wasn’t her first choice. Maybe it wasn’t her first choice, but it sure was my favorite! I didn’t even check the web site this time. When I called I got a human right away. She didn’t transfer me. She apologized for making me wait about a minute while she pulled up the information. Then she read through multiple items and told me not only that they didn’t have any gluten ingredients, but that the equipment did not process wheat products. That was it. Simple. Straightforward. Easy. The way customer service should be.

I get that gluten-free folks, those of us with an actual medical condition and not just the ones doing a fad diet, might not be the most powerful demographic for companies to reach out to, but they still should. If they ignored every small group, they wouldn’t have many customers left. And really, it’s the right thing to do. Anyone should be able to find out if a product contains allergens. I understand that having a product number might be more convenient for them, but it’s just not realistic for customers. And it’s not necessary. If Nestle can be so helpful without a product number, then should the other companies have that same capability?

So it looks like I’ll get my birthday cake, and it won’t make me sick. Too bad it was so hard to get the information I needed to begin with!


Sliding backwards

April 28, 2014

Sometimes I feel like Sisyphus. I keep trying so hard to get better, and I keep having setbacks. And yet, I know I’m one of the lucky ones.

I’m one of the lucky ones because I’ve seen improvement overall.

So I’m frustrated and grateful, scared and excited, angry and glad, whipping back and forth between different emotions as my physical health changes. I’m so glad I was able to go to a family party yesterday and still feel ok afterwards, but I’m frustrated that I don’t feel up to going out to dinner with friends tonight. I’m glad that I’ll probably feel up to going to a doctor appointment tomorrow, but frustrated that I probably won’t feel up to doing laundry afterwards. I see a bright future, but I wonder if I’ll ever reach it. It’s like the carrot being dangled in front of me. Family, friends, my naturopath… they all say that one day I’ll grab that carrot, but no one says that it will still be crunchy and delicious. Maybe by then it will have gone bad. Instead of working and socializing and living a so-called normal life, I’ll only be able to work a bit and then be too sick to socialize. Maybe I’ll never really be able to date again. Maybe my dream of being able to actually give a solid RSVP to an event is nothing but that: a dream.

Two weeks ago I was feeling pretty good. I had been seeing a lot of improvement since starting a CPAP machine. I was on a new medication. Things were looking up! I was feeling better than I had in ages and I thought it would continue. The pattern was clear: 3-4 days of feeling great, 1-2 days of feeling crappy, and another day of feeling so-so. It wasn’t perfect, but it was a great sign that things would continue to improve. And then that pattern ended. I don’t know why. Technically, nothing changed. I thought I was in transition towards a better stage of health but maybe that wasn’t it, afterall.

I am trying to focus on the positive. I feel so much better than I did two years ago. I feel better than I did even 6 months ago. And I guess that’s the difference between me and Sisyphus: so far, I haven’t had to start over in this most recent journey. I slide backwards, but not completely. That means that the next time I improve, I’m starting from a higher point. It’s not perfect, but I’m grateful for it.

So right now, as the dark clouds are rolling in and my seasonal affective disorder is kicking up, as my body aches and the fatigue is ever-present, as I wonder if I’ll ever reach that carrot of a future, I’m trying very hard to see the last few years for what they’ve been, and be glad that, at least right now, I seem to be done with them.

 


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.