Thursday, May 1, 2014

I'm Glad I Listened!

"Stop Telling me How to Eat to Cure My Incurable Disease!" screams the title of a blogpost provided by Woo.  Thanks Woo!

LOL!  I could have written this at one time, but I don't feel that way anymore.

A long time ago, a few months after being diagnosed with lupus, I still wasn't feeling very well.  I was getting discouraged by my inability to carry on throughout a normal day, thinking that I would never get better.

We got together with friends over the 4th of July, and I was talking about my illness with my friend, who has a BSN, so the conversations can get fairly technical at times and she is right there with me.  I was also drowning my sorrows in non-local wine.

They had another new friend at the party, a guy someone met at the gym.  At first he seemed friendly.  But when the others left to get more beers or to go to another part of the roof for an ocean view, I was left alone with him.  He got right into my face and started SCREAMING at me about what vegan food I should eat, what supplements I should take, how I should exercise.  Just like a drill sergeant.

This went on and on.  I was stunned.  I couldn't move.  I just sat there saying to myself, "Somebody rescue me!  Please!  Why can't they help me?"  Eventually the others came back, and the drill sergeant went onto other things, but I don't think I moved out of that chair until we were ready to leave.

Then again, if someone had told me at the time that I shouldn't eat wheat, I wouldn't have appreciated it either.  I didn't reduce wheat until over a year later.  By that time, I had figured out the appetite-stimulating aspect of wheat, and started reading about a low carb diet.  By the time Dr. Davis' book came out, I was planted firmly in the "wheat is poison" camp.  After a couple of years of monitoring (and a stint with Robb Wolf's autoimmune Paleo diet) my rheumy told me I didn't have to come back anymore.

I sort of forgot that I had an autoimmune disease.  And the concept that it might even be celiac was absolutely off the radar until I started reading Dr. Perlmutter.  So I am really glad that people like Dr. Wahls and Dr. Davis and Dr. Permutter are still telling people what to eat to cure their incurable diseases.  I just wish I had heard this information years ago.

Some time after the party, I mentioned the incident to my host.  He had no idea that the nutritional bullying was going on.  He still recounts the story to new guests, at every holiday, and he still keeps apologizing to me.  By now it seems pretty funny to all of us, but at times I am just so surprised at how many people think they can attack sick people.



17 comments:

  1. I wonder where some people get the idea that yelling is helpful in motivating or in explaining things. Did they try it on their family members and got a positive result?
    As a person sort-of fixed on the topic of allergies, I can't resist a temptation to say to you that alcohol is better to be avoided the if you have lupus or any other allergic conditions. I don't risk to repeat it too often to Tess, what if she gets irritated to the point that another martini would be necessary?

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    1. aw, Galina, it isn't YOU who drives me to drink, it's my husband! ;-)

      EB, i had the same mixed reaction to that story.... on the one hand, i know that strangers' recommendations, concerning things they really don't know about, can be horrific. on the other hand, that chick was willing to try veganism for no good reason, but she was SURE she couldn't possibly benefit from any other dietary regimen? she just struck me as a person who wanted to take her drugs and whine about her condition without doing anything about it herself.

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    2. I hoped it would be somebody else.

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  2. Tess, I had a mixed reaction to the blog post, too. She seems young, maybe she'll learn that more experimentation isn't always a bad thing. This reminds me of postings I used to see regarding MS. They'll fight to the death to be right that there is no cure.

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  3. Whaaa??? Alcohol got me through the first few months of my diagnosis!!!!! It was the only time in my life where I actually felt the need to drown in my sorrows. In reality, I had very little during that time because I was on the locavore challenge and I refused to pay a "chi chi premium" or Santa Barbara wines.

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    1. Checked many times by several people who have allergies, especially accumulated delayed reaction could be a problem. It is especially easy to notice when people have asthma. Conveniently, LCarbing eases that reaction . In my son's case going gluten-free allowed him to participate in parties again , and I can have some vine with my friends again.

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    2. I also suspect that among the people who have allergies rasacea are more wide-spread, and it is my personal conviction that rasacea flares when are caused by food are good indicators which food to avoid or minimize.

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  4. I hear ya, been in that same position myself. Don't the the bastards get you down. I've been told countless times that my GF LC diet will kill me, usually by people that don't look so healthy to me. 34 years GF no medical problems. 7 years LC no problems....don't know hmmm.

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  5. Someone just told me the other day that we need carbs for the brain. I had always made such fun of that meme, I can't believe that someone actually said it lol

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    1. I hear all the time that we need carbs for our brain or for energy. May be it is the main reason I avoid discussing diets with people IRL.

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  6. I have mixed feelings about the article, too. Yes, some well-meaning people have been overbearing, and many of them didn't know what they were talking about. But she doesn't seem to know that most doctors don't seriously study nutrition; they get their information from the media like everyone else. They get much of their information about drugs from salesmen; a lot of medical research is chicanery; and the money in medicine is from sick care. These *are* things that some of the people trying to give her advice know well.

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    1. Drug reps in nice suits so pretty...look shiny drugs to write for the masses! Treat symptoms not disease so my pharma can make bazillions of $. Sigh.

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    2. Yea Lori, that is what I thought. If she has lupus, especially, she should know that the medical establishment really doesn't have much to offer. They will just watch carefully while she flies off the rails, and eventually when it gets too bad, she'll get immunosuppressants. She, like me earlier, probably doesn't know that celiac runs with other AI's. Getting rid of gluten might not fix everything, but I am sure now that getting rid of it will help many.

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    3. Larcana, the sad truth is that many workable treatments for all types of diseases won't make any money. So, then they are not pursued by corporations. Bystanders with no skin in the game (just a thick layer of ego) take potshots at these remedies, demanding a "gold standard" clinical trial before they make a move, many of them just repeating what their professional organizations push and probably not realizing that any clinical is probably not gonna happen without corporate sponsorship.

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    4. Re: gluten. She said she felt more tired from a gluten-free diet and the "evangelists" said she was doing it wrong. Well, yes, you can have a badly crafted gluten-free diet, especially if much of what you're eating says "gluten-free." Would she call her doctor an evangelist if she said she was taking her medication wrong?

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  7. depending on the gluten-free diet she was on, she might not have been low-carb adapted yet. I felt much worse after experimenting with "gluten-free" products, and better with the Wheat Belly version of bread analogs.

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  8. Are You Having Problems STICKING with the Paleo Diet?

    Do you want to munch on some delicious recipes as soon as TONIGHT?

    Get your awesome Paleohacks Cookbook.

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