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About three years ago when I was first diagnosed with RA, I met a variety of people who told me that going gluten-free might “cure” RA. I didn’t put a lot of credence in their theory. It just didn’t seem possible to me, and in fact it made me kind of mad. How on earth would that be possible? RA is autoimmune, not food-based, right? It’s not a disease that begins because of our habits. And add to that my genetic connection to a parent with RA. The whole suggestion just kind of pissed me off.
But I guess I never completely wrote off the possibility of going gluten-free. Every time someone brought it up, my response was the same. “Maybe someday but I’m not ready right now.” Honestly that’s just a nice way of saying … give me a good enough reason and I’ll consider if it would be worth it to me. I love bread and all things wheat, so being gluten-free sounded like a small bit of hell right here on earth. But just in case, I eliminated processed breakfast cereals and limited my bread consumption … okay but not pizza or subs or cookies or cakes … at least not THAT much. I definitely found that the more healthy, clean, unprocessed choices I made, the better I felt. But gluten-free … nope, not yet.
Well, about 3 months ago things started to shift. I read a great book hoping to gain some insight for a newly diabetic family member. What? A book about diabetes talked about gluten? Yup – and autoimmunity … and the connection between the two. And I found an article that seemed credible covering the connection between the two topics. Both sources essentially said that eliminating gluten may lessen or remove the possibility of getting another autoimmune disease. And I read another book about the connection between thyroid issues, autoimmunity and gluten too. Hmmm … don’t want any more diseases … so maybe … Here’s where my “switch” or motivation was beginning to flip. More reading and more connections ensued. And I decided to give gluten-free living a try.
Know what really flipped the final switch? Well I just happened to stand on the scale one morning. The previous evening I’d had two small pieces of pizza and a few baked, breaded shrimps. Shocker – the scale showed I had gained four pounds overnight. Nothing else in my food the day before was inflammatory. But four pounds of water/inflammation packed on just from a “moderate” serving of wheat-based stuff. You should know that I’m not super worried about my weight – it’s healthy and I’m fitting in my clothes. That’s another reason why four pounds overnight seemed crazy.
So I figured maybe there is some truth to the connection between gluten and inflammation. Although I don’t suppose I’ll ever know for sure if gluten really would cause another autoimmune disease … or not. If I can hedge my bets, maybe it’s worth a try. And I thought to myself, “let’s give it 4 to 6 weeks and see how I feel. If there’s no change, I’ll just go back to gluten.”
I talked it all over with my husband, showed him the articles, and decided to go for it. And how long did it take to see and feel a difference? Not 4 to 6 weeks but 4 to 6 DAYS! Truthfully, I am still finding things that have changed … and it has been about 4 weeks now. Here’s what I noticed:
- Flexibility (what I noticed first … and as a massage therapist this change is very helpful … plus it’s easier to get on the floor and play with the grandkids)
- Major reduction in morning stiffness, especially in my hands (again, so helpful when I have early morning clients)
- Strength or more muscle soreness (I think keeping my muscles strong will ultimately benefit my joints, so this is important to me too)
- Major changes in how clothing waistlines fit (no weight change, just every single piece of clothing is looser & all muffin tops are gone)
- Less swollen feet at night (I stand for up to 8 hours each day, so this comfort level change is huge)
- Less wildly uncontrollable hunger (I used to say my stomach was really a headless monster but not anymore …)
- Less irritability, especially around hunger (this is huge because I have been attributing irritability to hormone changes … maybe not so much)
- Calmer emotions even in times of great stress (so I’m in the sandwich generation and a small business owner … need to be calmer every day)
- Less brain fog – not “losing words” or my train of thought at all (super helpful and makes me feel a lot less crazy and perimenopausal)
- Changes in muscle definition and general tissue quality (now you can see my muscles, plus they feel looser and less tense to both me and my massage therapist)
I can’t say for sure that going gluten-free will help you with these issues. (But I would wish good changes of any type for you!) I can’t say for sure that I will always experience being gluten-free as a positive force in my life. But I am hopeful … and that makes all the difference each morning when my feet hit the floor.
This week marks three years since my RA diagnosis, and I’ve been tossing around some thoughts lately. 2012 has been a rough year in so many ways, and as time progresses and the stressors don’t change, I can see how much that stress affects me. I also have had a couple of people ask me lately to share what keeps me going … strategies that help me stay feeling well.
Challenges: My main challenges are pacing myself and managing stress. I am a busy, doing, going and never stopping kind of person. This can be a little too much for my body sometimes. And my main stress relievers are exercise and my work (more on that later) … not exactly still activities. So I have to force myself to slow down and relax a LOT.
Strategies: I switched last year to a more gentle form of exercise – water exercise. I love it and find it to be the perfect pace. Plus I can ramp up or down depending on how I feel – and no one in the pool is judging me because it’a all underwater! (same goes for swimsuit-related self-consciousness …)
Strategies: I have a much lower stress career now than I did 10 years ago. That’s massage therapy versus advertising. Although I believe in good customer service and meeting my clients’ needs, I also have a wonderful group of clients who encourage me to take care of myself first so I can take care of them more effectively. I don’t have a boss telling me I must perform. I judge my schedule based on how I feel at the time. Even though I book people ahead (sometimes several weeks out are full), I can skip filling in the spot when someone cancels and give myself a break when needed. Little things like that make a big difference for me. I also work in a beautiful space that I completely designed. I play peaceful music that I love. I talk with chatty clients, or I have long breaks of silence where I can focus on breathing and the meditative nature of giving a massage.
Challenge: After a 10-year massage therapy career, I think I’ll probably taper off over the next 5-7 years. I’m nearly 50 now and ready to shift into another career – health coaching! I am passionate about this field, and especially about helping people who have chronic pain and inflammation like me.
Strategies: Still working on how to do this … but I just know that if I plan that will help. I have a few expert friends that I’ll reach out to for ideas. This is a big part of my strategies – don’t try to “go it alone!” Asking for help always offers better solutions.
Challenge: Managing medications
Strategies: Get a smart-phone enabled medication reminder app. It’s my savior and reminds me to take my meds twice a day. Plus once a week. Plus every other week. Ayyyiiiyii … I have enough in my brain without stressing about compliance. And consistent medication is a big help to my overall wellness. The meds reminder also helps me remember any non-standard meds I have taken, like antibiotics for example.
Challenge: I’d love to say that I can eat anything I want and never be affected … in my waistline or otherwise. But that would be a big, fat LIE. I have had to revise my perception of “comfort food.” If I eat a bundle of junk food, sugar or even too many carbs … my body gets angry. If I gain weight, my clothes hurt (literally … tight waistlines are yucky!) and more significantly my knees ache. My hands will also swell with too much “discomfort food.”
Strategies: Well, as a health coach, I know a lot of great information. I even know how to take baby steps and put it into action. And starting about 20 years ago, I began this journey toward making better health choices. 20 years?? That’s long journey … why so long?? Well, because I believe the journey never ends. There are always changes in our bodies and in nutritional theories. For example, three years ago I would never have truly considered going gluten free. Now I’m considering it pretty seriously. I work every day to eat clean – whole foods that are primarily home cooked with love. I read food labels and know what ingredients make my body hurt. I know how much I can “goof off” before I get the diet smack down. My morning starts with a nutrient dense smoothie, and my afternoon snack is often a fantastic green drink I found recently. I avoid “discomfort foods” but I also don’t allow stress about those foods to overwhelm me … that would produce the same result as eating a bite or two of the food.
Challenge: SLEEP! Some nights I have perimenopausal symptoms (extra uncomfortable heat), and others my husband snores louder than usual. Often I get achy in the middle of the night and can’t find a comfy position.
Strategies: Keeping a standard sleep schedule all seven days of the week helps me a lot. Same time to sleep and same waking time means my body isn’t surprised every night – less change equals less stress. I also found a cool thing a few weeks ago called a Spoonk. It’s an acupressure mat that I lie on for 10-15 minutes before sleeping every night. It seems to calm my nervous system down and deepen my sleep. I also think that better sleep is helping my digestion – an unexpected bonus!
Well, now these aren’t secrets anymore … you know them too! Hope they help you make your RA easier to manage.
or … Why Patient Awareness is Vital to Improving Autoimmune Arthritis Diagnosis
I thought I was a pretty aware patient. I’m a massage therapist, holistic health coach, and a yogi. I know bodies, and thought I especially knew my own pretty well. But looking back, I missed some signals.
It’s been 14 1/2 months since I was officially diagnosed with Rheumatoid Arthritis. I’ve been thinking about that diagnosis process lately, because until about a month ago I thought I was one of the lucky ones. My diagnosis process wasn’t long. It wasn’t fraught with speculation about various diseases. None of my doctors ignored my requests or told me that my concerns were in my head. So I thought that I had been lucky enough to have been diagnosed in an early onset stage.
Now that all may in fact be true … but lately I’ve realized that my RA symptoms started long before I even noticed them. Why did I realize this? Because it was this fall (about a year after official diagnosis) that I really started to feel like “myself” again. I realize looking back that three changes happened in my body that I discounted.
1. My entire body temperature felt like it raised about 5 degrees. Instead of always being freezing, I began to be warm or even hot most of the time. I attributed it to many things, but never thought about it being a possible symptom of systemic inflammation.
2. My ring sizes increased half a size at a time when I had lost about 10 pounds. Again, this would have been a warning sign but I attributed it to things other than inflammation. There was also no obvious joint swelling at this time.
3. I began to struggle with constant low-level fatigue, sometimes increasing to temporary exhaustion. I guess my sense of logic kept me focused on the many possible reasons (I had a long list) why I might be over-tired. I never ever considered that I had a disease. The fatigue crept up on my slowly, and was building during a time when I was indeed burning the candle at every possible end. So if you were working full time, going to school part-time, starting a new business, leaving your full time job and dealing with the illness and death of a loved one … wouldn’t you just figure you were tired because of all that? I did.
All three of this things have resolved for me in the last two months. I believe this is due to medications, as well as lifestyle and nutrition changes. When do I last remember not having these symptoms? 2002. OMG - that’s almost ten years ago!
Does this mean I’ve had RA to some degree for this entire time? And what if I had gone to my physician with any or all of these symptoms and asked for help? Sad to say, but I’m pretty sure she would have patted me on my head and written me an anti-depressant prescription. My family even asked me to get some anti-anxiety or anti-depressant meds but I resisted. (Been there, done that. It was helpful believe me!) Somewhere deep inside I knew I wasn’t depressed … it was physical. But even so, I waited until my joints were visibly swollen to ask for help with medical diagnosis.
So here’s my new crusade … when people tell me they are tired all the time, I remind them that it’s not normal to be exhausted. Especially if it goes on for a long time and they are generally taking care of themselves. When people express their frustration at pain, I remind them that it’s not normal to be in chronic pain.
We can all do a lot of things to take care of ourselves – exercise, eat nutritiously, sleep well, hydrate, etc. But when all those things aren’t enough it’s up to us to ask for help! There’s no way to start working towards a diagnosis without first realizing we need to ask for help.
**This blog post is part of a larger Blog Carnival organized by Rheumatoid Arthritis Warrior, Kelly Young. Please visit the other posts as well … this carnival’s topic is “How Can Diagnosis Be Improved?”**
I bought three new turtlenecks today. Except for one purchased last year with outdoor activities in mind, these are the first turtlenecks I’ve wanted or been able to wear in 7 years.
So who cares and what does this have to do with RA? Well, about 7 years ago I noticed that entire body temperature had increased a few degrees. Not hot flash style increases – I’m too young still & this was 24/7/365 change. I was more likely to have a tank top on under a sweater than a turtleneck.
The change seemed permanent and I donated or pitched my turtleneck “collection” which had been extensive. But as fall and winter have approached this year, I am cold. Not just chilly on the edges, but cold cold cold.
My theory is that about 7 years ago RA started to generate subtle inflammatory changes. They were inflammatory enough to raise my body temperature. Now that I am taking the bundle of RA medicines and my disease has become better controlled, the inflammation has lowered. It just doesn’t seem to be heating me up any more.
I’ve been thinking that RA was busy building inside me much earlier than I realized and this is also a bit more confirmation.
So I’ll wear and enjoy these turtlenecks — at least until I start hot flashing in a few years!!
As a holistic health coach, I am blessed to be part of a large and vibrant community of progressive-thinking folks. I have learned a tremendous amount about nutrition and ultimately about wellness from my training and experience. In fact, it’s this kind of naturally-based healing/health that I have focused on my whole life.
Many years ago I was a leader for Weight Watchers … my first experience with “diet” and nutrition programs. I’ve done yoga for years, and spent a lot of time at gyms working out before that. I’ve had acupuncture. I’ve trained in Reiki and receive it regularly. I’ve received other types of energy healing regularly for years. I’m a massage therapist who depends mightily on a weekly massage (and have for 6+ years). I love having green smoothies and shopping at my local farmers’ markets. I believe in the power of prayer. And for the most part, I’ve always tried a lot of natural healing methods before turning to medical care.
And despite all this stuff … the RA symptoms started. Reiki and massage didn’t help (although they certainly didn’t make anything worse). I tried to keep eating healthy, but my ability to exercise became severely limited. I had to cut my work schedule back by 20% to keep the incredible pain in my hands at bay. Symptoms didn’t get better when I wasn’t working either. Weight gain ensued … and it was all depressing. I hung in there with the natural healing methods as best I could, but I knew it wasn’t going to be enough. I’d reached a fork in the road.
It was time to pursue medical diagnosis and treatment. You’ve read about that process here on the blog, so I won’t repeat it. But let me summarize the results: I feel a thousand percent better! Practically my old self. I continue to pursue all my natural health and wellness methods, which support the medical process that keeps me going.
What I discovered is that it isn’t a fork in the road, but a new path. I don’t have to give up the things that have always helped me. I don’t have to feel guilty about getting the medical treatment I need to be well. In fact, my rheumatologist has been pretty darn impressed with my incredibly low inflammation levels. The other RA indicators are still positive, but my liver is processing the meds in the healthy way and my overall symptoms feel mostly under control.
So for those who might judge because I’ve chosen to integrate these (sometimes opposing) paths … take a walk in my shoes before you tell me I’ve done myself wrong. And remember, I wear mostly “sensible” shoes now … not the beautiful higher heels of my youth. So it may not be as easy or much fun to be in my shoes … but I’m happy here. Isn’t that what life is all about?
**This blog post is part of a larger Blog Carnival organized by Rheumatoid Arthritis Warrior, Kelly Young. Please visit the other posts as well … this carnival’s topic is “Resistance to Rheumatology Treatment”**
When I turned 40 my aunt told me that my body would never be the same again. That it would change unexpectedly and often. That everything I thought I had figured out would become wrong. That these adjustments would keep happening every year or so for the rest of my life. None of that information was easy to absorb or adjust to! And that was before the RA symptoms started!
Here’s an example of my “new body.” This morning my pain alarm woke me up. Truthfully, it woke me twice (at least) last night and then once after it was light outside. I’d just like to know who installed this alarm. How do I control it and could I even disable it? It’s bad enough to use an alarm clock to wake up every day, but having one inside my body stinks!
Another example is that lately my relationship to food has changed. I love delicious food. But I’ve been wondering why I find most food a lot less interesting. Maybe it comes from meds or maybe just from dealing with so many annoying issues related to RA all day. Sometimes I just don’t have the energy left to get excited about meals. Except possibly ice cream … LOL.
I have always been a bit ADD, hyper and not very good at sitting still. Now I treasure those days when I can fit a nap in during the day. I know that I have to take a break to sit down or lie down during many of my former “normal” tasks. I am grateful that I can still accomplish a lot, since I know a lot of RA patients aren’t able to do their everyday stuff. But it all just takes so much longer now.
Does anyone know where my body went … because I’d really like to trade this one for the other one. Okay? Thanks. Bye.
Just when I thought I was going to sleep … a rant took over my brain … because this afternoon for the third time this week someone told me that I probably have celiac disease & that it’s probably the source of my RA. And that going gluten-free will make me well. Oooooh-kaaaaay …
I have been told about this connection (usually preceded by “I don’t know if you’ve ever heard this before, but ….”) more times than I can count. And nearly as many times as someone has suggested that dark cherry juice will also be the “solution I need.” At this point I have already had 2 blood tests with negative results. I have absolutely no celiac or early celiac symptoms. And truthfully, my c-reactive protein and ESR numbers are quite low!
Even so, I am now seriously considering spending $300+ on DNA testing and attaching results for that plus the two blood tests to my chest with a safety pin. Just to get people to shut the heck up about “solving” my “problem” when they aren’t qualified or knowledgable.
I just don’t buy celiac disease as a cause for RA. But I do know one person with RA whose inflammation has improved from being gluten-free.
Maybe I will spend 2-3 weeks gluten-free because it certainly can’t hurt. I have been 80-90% gluten-free for a month before – but this was before my symptoms became active. I lost weight and felt terrific, but who knows whether that means it would influence my symptoms.
Or maybe I will just keep doing what I’m doing. It’s working so far and I’m happy. Now all I have to do is fall back to sleep …