Food Sensitivities & Arthritis

It’s amazing how many people with the various types of autoimmune arthritis have allergies and food sensitivities. Kinda makes you wonder if there’s a connection.

Unfortunately, some people assume that food allergies are a figment of the imagination. I recall years ago telling my daughter’s rheum that she was allergic to dairy, soy, and eggs. That doctor asked no follow-up questions, yet the letter back to our family physician put quote marks around “food allergies” as if we were making things up. Had the rheumatologist bothered to ask (or at least expressed skepticism), we could have clarified that an allergist said that she had food allergies.

One school of thought has studied which foods are most likely to cause reactions in people with autoimmune diseases, then put together an eating plan that eliminates all those foods that might be causing problems. After a suitable period of time not eating foods that tend to be problematic, those foods can then be re-introduced one at a time – paying careful attention to whether or not the reintroduction causes a reaction.

This seems like a reasonable approach. For myself, I know that if I ingest milk, within one day I have tiny red bumps all over my upper arms. It takes six weeks of no-milk for those bumps to go away. So when people talk of eliminating a food for a month, I tend to squint at them and question what they hope to accomplish in only one month.

I know a few people who have tried this particular elimination diet, but they didn’t make it sound especially attractive – lots of restrictions and no real meals. As it turns out, I suspect that they didn’t really comprehend all that it entailed. They understood the “eliminate” portion, but not the “eat healthy” part. The goal is to focus on nutrient-rich foods and work on eating a well-balanced diet while avoiding potential allergens. I’m finding lots of delicious recipes (and a few strange ones).

Focus on eating:
• Meats
• Seafood
• Leafy greens (lettuce, spinach, kale, etc)
• Cruciferous veggies (broccoli, Brussels sprouts, cauliflower, cabbage, etc)
• Colorful veggies (carrots, yams, beets, squashes, asparagus, etc.) (avoid nightshades)
• Herbs
• Healthful fats (olives, avocados, coconut, olive/avocado/coconut oil)
• Berries & fruits (limit fructose to 10-20g daily)

I don’t know about you, but I think that looks like lots of pretty nutritious foods!

According to this theory, certain food groups are most likely to cause people to react, and it amazes me how many of these foods I’ve known for years to be a problem.  Categories of foods to be avoided for a period of time under this plan, are:

• Dairy (I already know that I have problems with milk & cheddar cheese)
• Eggs (I can eat duck eggs but not chicken eggs)
• Grains (I know I have problems with some grains)
• Legumes (I’m allergic to soy, and don’t eat peanuts or peas)
• Nightshades (I refuse to eat eggplant; potatoes make me ill; paprika makes my mouth feel like it’s on fire)
• Nuts
• Seeds
• Refined/processed sugars
• Refined/processed fats/oils (I know that some fats cause me to flare)
• Alcohol
• Sugar substitutes

Based on what I know about how my body reacts to some of these foods, I’ve decided that it might be worth taking the time to do the full-blown elimination diet while focusing on nutrient-dense meals. I’ll also be incorporating what I’ve learned helping my mom get her diabetes under control (considering the glycemic load of foods, balancing protein:carb ratios). Since I know that it takes a full six weeks to get rid of the rash that milk gives me, I’m planning to try this eating plan for at least two months, then start re-introducing foods.

Reports are that many people with autoimmune diseases are able to identify food sensitivities and then adjust their diets accordingly, and are able to put their disease into remission.

I tend to be skeptical. Unlike much in the CAM world, though, nobody’s getting rich fleecing sick people with this elimination diet. The information is available freely on the internet. We’re going to eat anyway – this just has us make healthier choices. I don’t know if I’ll get remission, but I’m certainly willing to adjust my diet if it means that I’ll feel better.

Some people go cold-turkey, jumping in all at once. I think that’s a good idea – in theory. In practice, I just haven’t managed to write up all the menus yet. I’ve tried, but life keeps encroaching on my time! What seems to be working is easing my way into it, finding and trying recipes when I can.

I’ve managed to write menus for three weeks’ worth of breakfasts. My goal is 18g protein with 39g carb, and the glycemic load 10-15; I’m rarely exact, but usually close. The wonderful thing from a time-management perspective is that many of these can be prepared in advance and stuck in the freezer. So if a recipe serves 8, I can eat it once and put seven servings in the freezer – so I actually have many more than 3 weeks’ worth of menus. 😊

The key to success seems to be careful planning.  If you walk into the kitchen hungry and wonder what to fix, it’s easy to default to the familiar — which might not be what’s best.  Planning in advance so that there are no decisions to be made at mealtime seems to make a huge difference (at least for me).

In case you’re interested in some new (sometimes strange) breakfast recipes, I’ve included links below.   Many of these can be made ahead, frozen, and reheated at a later date.

Week 1:

Week 2:

Week 3:

Weekends:
Traditionally, my family eats pancakes (preferably huckleberry) or waffles on Saturday mornings.  Sunday’s breakfast is prepared Saturday night, with a ham going into the crockpot to slow-cook, and cinnamon rolls prepped and set in the oven to rise overnight, and with the oven on time-bake so that we can wake up Sunday morning to the wonderful aroma of fresh-baked cinnamon rolls and ham (served with applesauce on the side).

Obviously our traditions do not fit into my new way of eating. I’m still making my family their traditional foods. For me, I’ve searched for similar replacements:

Note: because I’m trying to carefully balance proteins:carbs at 18:39 per meal, the serving sizes that I’m using do not always (ever) match up to the recipe creators’ serving sizes — which is what has taken me so long to find menus that work without tons of repetition.  It’s not just “eat this, don’t eat that,” but working on the macro-nutrient quantities, too 🙂

FOOD

Now that breakfasts seem to be under control, I’ll begin working on supper menus.  Please chime in if you have favorites to add.

Technology as health tools

I thought that being an RA patient was a full-time job.  If so, then taking care of an aging parent qualifies not just for overtime, but for double-time! It is exhausting, which hasn’t been so good for my RA.  Fortunately, I’ve learned a few things that have actually helped me improve my own health.  My brothers are assisting with mom, and between us all we’ve done a few things that have helped my mom to be in better health now than she has been in at least a decade.  Two of those things we’ve done might be helpful for RA patients, too.  Technology is great.

The first thing we did involved gadgets.  We got Mom a Fitbit Charge2 (and an iPhone). There’s some interesting research showing that use of a pedometer can ease RA fatigue, so we might all want to make ourselves get up and get moving. If all you want is a pedometer, spend $5 at WalMart.  The fitbit does so much more than count your steps, though.  This is a pretty neat little gadget. It’s a wristwatch. It’s an exercise tracker. There’s a setting that will make the thing vibrate every hour if you haven’t taken at least 250 steps (but not at night), so you get a gentle reminder to get up and get moving (which I need).  I knew that with my RA diagnosis I’d learned to conserve steps, but didn’t realize quite how sedentary I’d gotten until I started looking at my step-counts. You can set a goal for how many steps you want to take each day, and when you reach your goal, the fitbit congratulates you 🙂  Adding in an app to sync the fitbit with your phone makes it easy to set exercise goals, sleep goals, and even track how much water you drink each day.

The next thing we did was take a look at mom’s glucose readings.  (skip this paragraph if you don’t care about diabetes) There have been problems with mom’s medicare-approved glucose meter, the most significant being that mom’s anemia is severe enough that the meter often gives errors instead of reporting results.  Nearly as important, imo, is that the black numbers on a grey background are nearly impossible for her to read. Why Medicare pays for something that’s basically useless, I don’t know.  We found a solution! We bought a meter that is able to give results in spite of the anemia, and which has a white background and extra-large numbers so that mom can read the display. This solves both problems. (OneTouch Verio, if you’re in need of a good glucose meter.)  What we’re really liking is that this meter syncs with the OneTouch Reveal app on mom’s phone, so there is an easily-viewed record of all mom’s glucose readings.  We showed her doctor at the last appointment, and the doctor loved it. My brothers and I also put the app on our phones and logged into mom’s account, then set reminders to check mom’s glucose readings about 10 minutes after her meal times.  It’s nice to see those numbers and know that mom’s okay. Before switching to this meter, we’d asked her to text us every time she tested, which she found a little more cumbersome than she wanted to deal with. Now she just tests like normal, and we can see her numbers. The way the report is set up, it’s easy to look at it and see patterns.  “Gee, mom, you’re always high at lunch time; maybe you should consider changing what you eat for breakfast.” We’re finding the right balance between, “You’re an adult; do what you want,” and “Given your family’s life expectancy, you probably have another 20-25 years; controlling your glucose will have a significant impact on what those years are like, so you might want to get this under control.” If her numbers are high, then my brother texts, “What did you eat?!” and that helps her be mindful of her diet. If she doesn’t post something, or if her reading is low, I contact her to make sure she’s vertical and not in need of assistance.  Never again will she nearly die because nobody knew she was sick.

The final thing we did that seems to be helping mom tremendously, and is helping my brothers and me lose weight, too, is set up a free MyFitnessPal account. We all set up accounts and friended one another so we can help mom keep track of what she’s eating and how that affects her glucose levels. I know that the fitbit app allows tracking of what you eat, but we’ve found MFP to be easier to use.  It also displays the info we want (and it syncs with the fitbit so the data is both places).  We did the math to help mom figure out how much protein and how many carbs she should be eating (and did the same for ourselves). We named the meals with that information because she was having a tendency to forget, so, for example, her meal names are:

  • 7:30 am: Breakfast (32g carb, 15g protein)
  • Noon: Lunch (32g carb, 15g protein)
  • 4:30 pm: Dinner (32g carb, 15g protein)
  • 7:30 pm: Bedtime snack (32g carb, 15g protein)

Combining these three things (three apps on our phones) has made it really easy for mom to see the correlation between what she eats, how much she moves, and what happens to her glucose. She thought she was controlling what she ate, but seeing exact protein:carb numbers has been extremely helpful. She got her A1c down to 7.0 ! It helps me, too, because I can do a virtual check on my mom at any time.  Honestly, it was exhausting when I had to drive to her house every.single.day.  Getting mom to really get things under control with the help of these tools (apps) has made my fatigue level decrease 🙂  If you have diabetes, or are caring for someone with diabetes, maybe these things can help you, too.

As for RA, I find these apps quite useful in a couple different ways.  First, using MyFitnessPal makes it easier to keep macronutrients in the right proportions, which means that I have to eliminate foods that provoke inflammation, so my disease is better controlled. As a bonus, eating the right proportion of macronutrients means that I don’t get hungry between meals so am not tempted to snack.  Second, the “friends” aspect of MyFitnessPal means that others in my family can see what I eat, which inspires me to make choices that I won’t be ashamed to have them see :).  Finally, getting a fitbit has me moving way more than I used to. Although it seems counter-intuitive, the extra activity actually decreases fatigue.

I’m looking forward to browsing the iMedicalApps site to see what other helpful tools might be out there!

Being Heard

Life has been crazy busy, which I take to mean that life can be full, even with autoimmune arthritis.  Despite not being a fan of CAM, I highly recommend dietary changes.  Unfortunately, I cannot go into detail at this time. I promise I’ll write more about what I’ve learned one of these days.  Crazy busy…

We interrupt this sporadically updated blog for personal minutia.

We might be closer to getting my mom a rheumatology referral.  She’s been asking for years, and the NP’s she’s seen have been condescending, rude, dismissive…  (the MD was fired).  Every time she went to the primary care clinic, the last person she saw was gone and there was a new NP to not listen to what my mom had to say.  She’s been quite frustrated, and I’ve wondered why she didn’t go find a new doctor to actually listen to her.  Apparently there aren’t very many MD’s taking medicare.

Unfortunately, the road to finally getting someone to listen has been pretty rocky. A few weeks ago, mom sent me a text:

msg

She did not actually need help throwing up. She was doing that on her own quite well. I knew she needed help, so dropped everything and raced to her house.  She has never sent a message like this before. She tends to be one of those, “Leave me alone; I’m fine” kind of people.

After reaching her house in record time, I dug out the spare key and let myself in. I’d never seen her that sick.  She’d been too busy throwing up to take her insulin.  Oops.  Not a good sign.  I asked various questions and she sometimes made sense and sometimes didn’t.  Not a good sign.  Suggesting, “I think you need to see a doctor,” met with significant resistance.  She just didn’t want to get out of bed.

Finally I asked what/when her last glucose reading was.  She’d been so sick she hadn’t checked her glucose levels all day, just laid in bed and slept and barfed into the basin on the floor (TMI, sorry).  She couldn’t even remember how to use the meter for me to check for her. Persuasion wasn’t working as I tried to convince her to see a doctor, until finally I said, “I don’t think you’re in any condition to be making that decision.”  Not something I ever thought I’d have to tell my mom!

My husband carried mom to the car, and one of my brothers met me at the ER doors with a wheelchair to take mom inside while I parked.  By the time I got inside, not only was she in a room, but they’d already written admission orders!  She spent 3 days in ICU, and a few more days in the hospital once she was out of ICU.

For all the talk of HIPAA and people being ultra cautious about sharing anyone’s medical information – even with other doctors who need the information to treat the patient, I was pleasantly surprised at how open the doctors and nurses were in answering questions about my mom. We just wrote out questions on the handy dry-erase board, and as people rotated through the room, they’d notice the questions and answer the ones they could. Anything we asked, they answered.  And I don’t think it was because we delivered donuts every morning and had pizza delivered for the night shift.  The hospitalist even phoned me (not my mom) a couple days after discharge to check on how she was doing and let me know about an incidental finding that needed follow-up.

Where am I going with this?  What does it have to do with arthritis and the impossibility of getting a rheum referral?

Mom was instructed to follow up with an MD, not an NP, which made her finally willing to look elsewhere for her medical care while still staying in the same system that will accept her medicare.  The doctor she ended up with is fantastic!  We found someone who just finished residency last summer, which means she’s up on the most recent research and hasn’t been doing this long enough to be burned out.  This doctor listened, looked at tons of information, and listened.  This doctor didn’t brush mom off, but looked at the reasons she’d like to see a rheumatologist, and is going to do some research before the follow-up appointment (at which time I anticipate mom will finally get her referral)!

I really think it made a difference having diagnostic criteria clearly written out, indicating my mom’s score and why we believe she deserves a diagnosis. The doctor has a place to start in checking to see if we know what we’re talking about. It is amazing how good mom felt to finally have someone listen to her.

Hope your life is going well enough to also be crazy busy!