Eating (Gluten Free) Crow

March 9, 2012 at 10:07 am (Chronic Pain, Living With Chronic Illness, Medical) (, , , , , , , , , , , , )

It seems to be the Del de Dao. A well-meaning person will tell me about how their SisterFriendFatherInLawVeternarian tried [thing] and saw miraculous results. I ask my doctors about [thing], and I get mixed messages. I do a little research, and I hear both positive and negative stories about [thing].

If [thing] is popular, or the hot-new-treatment-of-all-your-ills, I’m about as resistant to it as someone whose favorite indie rock band was just seen on MTV. I don’t know why this is, honestly. I’m not a follower, and that streak in me runs so deep that when something might even be good for me, if it makes me feel like a follower I decide not to do it.

Yet somehow, in the end, there I am, doing [thing]. Sometimes it’s the best decision I’ve ever made, and sometimes I was totally right. Most of the time, the effort to do [thing] is greater than the benefit I see from [thing], and so [thing] falls by the wayside. That even applies to alliopathic treatments as well; if it doesn’t make a tangible difference in my day-to-day, I usually give up.

The most recent example of this was acupuncture. It is something you can’t avoid reading or hearing about if you have chronic pain. The overwhelming messages out there about pain and acupuncture is that it makes a radical difference. Most of my friends who won’t or can’t take opiate medication subsist on acupuncture for pain management. I was resistant to it for a couple of reasons, the biggest being that any kind of “standard” energy work (that isn’t tailored to the client specifically) seems to affect me in a negative way, and from what I understood about acupuncture that was its mechanism. If client complains of X, put needle in Y, regardless of who the patient is and why X.

I made the decision to change my curmudgeonly ways and give it a shot when I decided to go off the Fentanyl. As I’ve said before, Fentanyl is basically legal heroin, although some argue that it’s more potent. I was on a high dose, and I knew the detox was going to be pretty bad, and that I was likely to see a radical increase in my pain levels. I happened to have a friend who had graduated from a well-respected local acupuncture school, who had a good sense of the fact that I was energetically weird, and was willing to work with me to see what we could do. It didn’t hurt that she could come to my house, either.

My general policy on any sort of treatment or lifestyle change that I choose for medical reasons is that I will give it three months. I figure that’s long enough to see a change if a change is coming, but not so long that if it’s having a negative overall effect that I can’t recover. (Remind me some day to retell the story on why only “eating” protein shakes and tofu for eight months was a colossal mistake.) That’s the commitment I made to the acupuncturist; I would do whatever she suggested within reason for three months, and then I’d re-evaluate my situation when all was said and done.

I will admit that in this case, it was a tough situation. Not only did I have all the normal Del symptoms, but I was in deep withdrawal from the Fentanyl and there were many sessions where all I was really interested in treating were the side effects of that. But I did just about everything the acupuncturist suggested; I bought supplements she thought would be useful, I allowed her to try whatever treatment she thought best, even when I was wary of the outcome, I was straightforward about my experiences so she could shape a treatment plan.

Unfortunately for me, and I guess for her too, it didn’t work out. I found that the effects were negligible, both on the withdrawal symptoms as well as my pain. There were a handful of sessions where I felt better for a few hours afterward, but as soon as any sort of “real life” intruded on the feelgoodness, it disappeared. I had several sessions that actually aggravated my pain or had other pretty unpleasant outcomes, including a notable session (during that wacky earthquake we had over the summer) that triggered some of my mental health issues in a serious manner. There was one treatment in particular that I felt probably did actual damage to me. Considering that I let her choose how often I saw her (which turned out to be 2-3 times a week, and I believe in one week it was 4), it was a pretty expensive thing to get such a small return on. In the end, I decided to stop treatment and see if I missed it; I actually found that I was much happier when it was over.

As you might be able to guess from the title of this post, I’m getting ready to undergo another new-hot-treatment that’s been getting a lot of press. I want to make it clear that I’m pretty damn skeptical about it, because eating gluten-free feels an awful lot like the 2012 version of the Atkins diet in 2002 (which I also tried). The “eating crow” part is because I’ve questioned some of the acolytes openly on their celebratory posts, and I’ve argued with people who have suggested this treatment to me in the past. Because caffeine gives me bad side effects, right now I rely on carbs like bread and crackers (and admittedly, sometimes cookies and muffins) for quick cheap boosts of energy and to increase my pain tolerance. I’ve been tested several times for Celiac and they’ve all been negative. However, this time I’ve been won over not by the hype, but by the sincere faith of the person I’m trusting to walk me through this experience. She’s a professional-level CrossFit competitor who has studied the affects of nutrition on the body and is probably the most knowledgeable person I’ve met on the subject, professional or amateur. She’s currently working on coming up with a diet plan that is functional with my current limitations (limited access to my kitchen, mini-fridge, needing a fair amount of ready-to-eat food, not heavily reliant on raw vegetables, with a fair amount of choices for eating out/away from home, and allergies) as well as a few exercises that I can reasonably handle given my body and its quirks.

I’m not looking forward to this, but at the same time, I am holding out hope. That may sound a little paradoxical, but it’s the truth. One of the reasons I am overweight is due to growing up poor; my brain and my body equate restricting my food intake and choices with being destitute, which in turn is a trigger for depression. It isn’t logical and I’m okay with that. Also, being a fat kid, there aren’t many diets I haven’t tried, and each one of them came with their own stories about how great it was and how it was going to change my life. I should be clear here and state that I am not undergoing this treatment to lose weight, although we expect that will happen of its own accord. I am doing this because many people with undiagnosed pain conditions, as well as people with CFIDS, Fibromyalgia, Multiple Sclerosis, and other maladies that have been posited to me, have found some relief of symptoms from eating a gluten-free diet, and because this friend was incredibly compelling in her attempts to convince me to try this. I should also add that the thrust of this undertaking isn’t just being gluten-free; I don’t know the whole plan but I do know that it has some basis in the Paleo diet camp. Lots of meat and veggies, no gluten, “good” carbs, with a little wiggle room here and there as needed. I know that a point she felt strongly about included, “No ‘gluten-free substitutes’, either.”

I don’t have a set start date for this undertaking, as she’s still working on the plan and I assume there will be some discussion and education before it begins. Ninja has already stated that he is happily opting out of going on this journey with me, which may make things exponentially more difficult, but I don’t blame him either. I’ll let you know when it starts, and may give some updates about how its going; I’ll definitely let you know what I decide after three months.

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17 Comments

  1. Sandy Clark said,

    Just beware of the hidden gluten in processed foods, marinades, sauces that can continue to trigger your symptoms even if you think you are not eating gluten you might be. As someone who eats gluten free now because I have to (otherwise I get really sick), I can tell you that I would not eat this way if I didn’t have to. I have a lot of sympathy for what you are going through.

    • dying for a diagnosis said,

      Here’s one of my concerns, that maybe you have some insight into. A lot of the people I know, whose reasons for going gluten-free vary widely, now say that eating gluten makes them “get really sick”. My concern here is that if I decide that all the work and limitations that come with adopting a gluten-free diet aren’t worth the effects, will I be able to go back to eating gluten? I mean, I remember coming off of Atkins and that it took time for my body to acclimate to carbohydrates again, and that I’m willing to deal with. What worries me is that because giving up gluten changes some of the mechanisms of your digestion, once I do this, I can’t undo it.

      • Larissa (jasminewind) said,

        My husband is GF in a similar non-Celiac but gets really sick sort of way that Sandy is. When he went GF, it was *hard* for his psyche for similar reasons to those you mentioned – food deprivation being a trigger for you. It has taken him a long time to make peace with his GF diet but that has been possible because it WORKS for him.

        Personally, I have never had any problem with gluten or my digestive system (lucky me). When he went GF, the kids & I continued to eat breat & whatnot. However, over the years (it has been more than 3) I think I notice more what gluten does in my body. It isn’t necessarily that it makes me sick, but it interacts w/my body in a way that causes bloating, inflammation and fullness. I think it always did, I just didn’t notice. But it has taken years of mostly GF eating to get there. I think you’ll be fine going back to gluten if you try it for 30 days and find no benefit.

        With regard to eating out – we have found that eating mexican or indian food is easy to do gluten free (though in Portland there is a lot of GF awareness).

        I read somewhere that when cutting back on carbs if you increase your fat intake for a short time it helps. Something to do with the hormones & insulin, related to hunger. Be damned if I could put my eyes on that study again but it was hard science. Maybe your guide has some insight in that regard.

        Best wishes Del!

  2. Sandra Clark said,

    The quick answer is no. If you don’t get relief from this within a few weeks, you should be able to go back to eating it with no worries. However, if you do get some relief from the diet, then it’s something you will need to stay on indefinitely. I’m leery of gluten free for weight loss, I certainly haven’t experienced that, but my research does indicate that it could have really good effects on some of your symptoms. I’m not a person to tell someone what they should do and I realize you have some major challenges.

  3. Kate said,

    Definitely interested to learn more about how this goes, and have fingers crossed that it does what you’re hoping it will!

  4. Sam said,

    I am sorry I wasn’t able to help, and I’m glad you are still open to trying new things.

    I’ve been mostly gluten free for over a decade, and it has helped me (as much as its a bitch to do).

    • dying for a diagnosis said,

      I want to be super clear and public about this at the same time: I do not believe that what happened was a failure on your part in any way. My take-away from trying acupuncture is that whatever mechanisms it uses to relieve pain do not work the same for me. Even some of the people who used to preach about the needle have told me that they, too, had diminishing returns over time, and they were seeing other practitioners. I do not hold you liable for one ounce of what happened to me. I knew going in that I was energetically weird, and that there was a chance that weirdness would get in the way of the healing mechanisms of treatment.

      I am also very clear that I underwent treatment during a particularly challenging time; in fact, I was telling someone yesterday that the withdrawal was so bad, that I’ve blocked some of it out of my memory. This summer is a blur of discomfort and anxiety. I have considered giving acupuncture another go once I get to a good place with my alliopathic pain management.

  5. panoptical said,

    I don’t think we were really in touch during my CrossFit days, but CrossFit’s effect on my overall health and fitness was overwhelmingly positive. I took their Nutrition seminar with Robb Wolf, who (at least, at the time) was a big proponent of gluten-free and who continues to promote Paleo, as well as their level 1 trainer certification.

    The things I like about CrossFit, in no particular order:
    – they encourage research/geeking out about health/fitness
    – when I was following CrossFit’s dietary and exercise recommendations, I felt significant improvements in daily mood, in the way I generally felt physically, in self-confidence, and in overall energy levels. (Relying on the high-carb boosts to mood and energy is actually a vicious cycle; it destabilizes you and screws with your health)
    – my knee pain and back pain went away. Before I joined CrossFit I couldn’t climb a flight of stairs without knee pain and I wasn’t lifting things properly which had causes back and groin injuries in the past.
    – CrossFit is an incredibly supportive community. They love helping people and believe in the power of the tools they use for fitness

    I did gluten-free for a while; I missed bread like nobody’s business and it didn’t seem to give me any added benefits over the regular Paleo diet and I missed beer like nobody’s business… that said, it has helped many people, and I hope it helps you too.

    Point is, you’re in good hands with a CrossFitter.

    • panoptical said,

      Excuse me – this phrase “over the regular Paleo diet” – should be “over the regular CrossFit diet” – which was Zone, not Paleo. Zone is a system of allocating calories across protein, carbs, and fat for optimal nutritive balance.

    • dying for a diagnosis said,

      I’ll say to her benefit that she was the first person to really explain to me how changing my diet in this fashion would affect my pain and fatigue issues, as well as the new symptom of radically reduced stamina, in a way that made me excited to try it. She is also helping me come up with a way to convince those in my life who are worried about me going on testosterone about the positive effects of T on the body. I’m really blessed to have met her and developed a friendship with her to the place where we both felt comfortable discussing this. (She can be a bit of an introvert and it took a while for her to warm up to me, I think.)

  6. Eric S said,

    Good luck my friend. I was forced to change my diet a year ago and it really helped but I have no illusions that the two are remotely connected. But, if I can help with motivation or something, let me know.

    • dying for a diagnosis said,

      If things go really well, I might want to come over and take some swings at your bag. And by bag I do not mean “wife”. (Don’t tell her I said that.)

      • Eric S said,

        Done and done my friend. I have been joking about a fight club in my basement for awhile. 😉

  7. Evil Voodoo Celt said,

    I hope it works well for you.

    In re: Ninja not doing the diet too: Monster Alice went on a Paleo diet last year, and I didn’t. Sometimes it feels like “Jack Sprat and his wife” around our place, but in general we work around it. Only somewhat analogous to your situation, I know, but I wanted to give some general encouragement. Also, she follows a lot of stuff in the Paleo community and would be happy to research things for you in that direction.

  8. Jaime said,

    I’ve been living on a pretty “clean” diet since July and it has helped me manage my pain tremendously. I actually formed my own plan with my nutritionist combining the Zone diet and used foods allowed under the book “Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain”. My main goals were to stop my trifecta of headaches (chronic daily headaches, daily migraines, & chronic tension headaches) and to loose weight. I lost 90 pounds and got the headaches to a manageable state. GREAT! There is a theory that sometimes what our body craves is actually what is making us sick and making us store fat. From my experience (and the experience I have found in others) this is something worth exploring! I had natural cravings for bread, carbs, pizza, cheese, citrus fruits & chocolates. These are all things that make me quite ill!!!

    Then my nutritionist told me I had lost enough weight and needed to slow my horses, so I needed to add some carbs. But I can’t eat bread on my diet… but I somehow added gluten back in. Then the fibro flares picked up and picked up BAD!!! I have been desperately trying to get it under control and back to where I was before I added back this darn gluten!

    Another thing to watch out for if you haven’t already been warned is nightshade foods. I am not trying to make it seem difficult for you, because this is something that can be made very simple once you set your mind to it! But, nightshades will trigger inflammation in the muscles as well. So, many of us do our darndest to stay away from them! Funny thing for me on my journey is that I started eating a certain way to cure my headaches. I wasn’t as concerned about my fibro. But in the process I actually found a diet that would manage both! I just need to get this gluten OUT of my system and stop sneaking my husband’s Captain Crunch! LOL

    90 days is a good trial period. I always recommend that to all that I work with as well. I actually broke down my goal periods into 30 day increments so that I would be able to reevaluate my progress at each marker. Made me feel a sense of accomplishment and kept me motivated. It is easiest to stick with the boring foods. It might not be fun, but it gets better after a while. And easy with less pain means more fun elsewhere in life, right? 🙂

    Good luck on your upcoming journey! I believe this is a great thing that you are doing for yourself!!! Don’t get caught in the “hype” either… just do what is best for you and your health because that is all that matters in this life! 🙂

  9. It’s a Pain, Being In Pain « Dying for a Diagnosis said,

    […] I have tried a multitude of other pain management options. I’ve done the Reiki thing, the acupuncture thing, the chiropractic thing, the herbal tea thing, the changing my diet thing (which I’m about to […]

  10. Tirani said,

    I wish you luck my friend. Variations on Paleo/GF were helpful to me prior to my surgery, and i intend to pick them back up now that I am coming back up to speed.

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