Wondering how to give solicited medical advice

April 25, 2014

There’s a big difference between giving solicited and unsolicited medical advice. I think I’ve got a handle on giving unsolicited advice, but now a friend is asking for help and I’m not sure how to respond.

When you’re consumed with health issues, it’s easy to see them everywhere you look. I spend so much time and effort on getting enough sleep, eating the right foods, getting enough exercise, avoiding bad foods, etc., that it drives me up the wall to see people with more choices doing unhealthy things. The thing is, if the person doesn’t ask for advice, then offering it can be off-putting. They may be insulted or simply choose to ignore me. They probably aren’t ready to hear the message anyway. So I respond by posting tips to Facebook, where my family and friends can choose to read them or not. I’ll make comments that aren’t directed at them, just to get them thinking, like “Isn’t it terrible to think how many hormones people get from the animals they eat? I wish the FDA would do something about that.” I don’t badger anyone. This has been working out pretty well so far.

But when someone asks for advice, those rules go out the window. I’m back to wondering, how much is too much? If I give her too much information, will it scare her off? And can I trust my own perspective? I want to warn her that many doctors won’t run the right thyroid tests or prescribe the best medications. I know this is true. I’ve experienced it. I’ve read books about it. But if I tell her this now, before she’s found a doctor, will I be saving her from years of problems or will I be unnecessarily passing my own bias on to her?

I know that my friend needs help. She emailed me her blood test results and her symptoms yesterday. I will be honest that I can offer some good advice on some areas, but I don’t know anything about others. That’s fine. She knows that, and it won’t lower my credibility in her eyes. And she knows I’m not a doctor and won’t hold me liable for anything I suggest, so there’s no worry there. But I do see problems with her test results and her symptoms. She’s turning to me because she’s not getting great medical care. I want to help her. I just need to figure out the best way to do that.

How do you help friends who ask you for medical advice? Do you give advice or not? How much detail do you give? Do you warn them about the horrors of dealing with the medical community, or do you hold back on that? What else do you think I should consider?

 

6 Comments | Decisions, Educating, Expectations, Frustration, Support | Permalink
Posted by chronicrants

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

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.

6 Comments | Educating, Support | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »