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ButterflyChaser

Member Since 07 Nov 2012
Offline Last Active Apr 06 2013 05:08 AM
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#858106 Why Are Drs So Hesitant To Test?

Posted by ButterflyChaser on 11 March 2013 - 08:13 PM

Hi MissyShelle,

 

Great thread! I am not sure I have an answer, but I can say what I have observed from my own personal experience.

 

1) They tell you that tests are expensive, and if they run them, they don't run complete panels. If medical health is provided not as a basic human right but as a privilege (and here the issue gets more complex than insurance only, so it's not just an American problem, though here it may be more visible), then you don't want to pay the labs, you want to pay the pharmaceutical industry. They're the ones that, ahem, hold classes in exotic islands for their doctors... so yes, tests are expensive, but also if you make a "diagnosis" that keeps the patient on lifelong medications, which after some years require medication #2 for the side effects of medication #1, then the doctor is feeding Big Pharma, saving Big Insurance's money, and therefore getting their little perks. Most honest doctors *will* tell you that they get incentives to act this way, which is how I learned about this. You make the patient live with the disease rather than trying to shake the disease off them. Chronicizing is monetizing.

 

2) Misinformation/laziness/sheer ignorance/degrees granted where the students should have been given a plow to till the land. No specification needed here.

 

3) The spinning out of control of the "psychosomatic disorder" craze, which I summarize as a great insight gone awry. They finally figured out that the mind can affect the body - which is "duh," if you think about it, since my mind exists because I have certain organs - brain above all - which just happen to be parts of my body. But then this became misinterpreted by people at point 2 as an epidemic of  "hypochondria rampans" - which was exploited by people at point 1 to make munny out of, mostly, psychotropic drugs. A quick search in the APA archives will help you figure out how many people in the US use one or more psychotropic drugs. The numbers are high enough that either the whole nation is under the attack of invisible soul-sucking zombies, or simply psychotropic drugs are being prescribed to people who do not necessarily need them. Long story short: if we believe that most people are hypochondriac, why should we test them? Just give them Prozac!

 

3.1) The latter point is further complicated by how some conditions are simply not or at least badly understood AND may mimic mental health disorders. Autoimmune conditions are a case in point. Many of them cause exhaustion, or altered moods, "brain fog," nervousness, panic attack, weight alterations etc... Obviously, it's easier to assume it's the "mind alone" to cause them, rather than the "mind as part of the diseased body" (which, as you can see, contradicts the principle itself of the psychosomatic hypothesis), as if the patient's "mind" floated around, detached from their bodies. So you don't test for celiac disease because the plaintive patient is just victim of the latest diet's fad; you don't look for lupus / arthritis rheumatoid because the patient is lazy; you don't test for thyroid disorders because the patience is a lazy pig or an annoying anorexic (this is what happened to me). You "choose" to be ill, so why bother? After all, we know that most women are "weird" in the head and blame it on their bodies, like in that times of the month, so how can you trust a woman in pain? Funnily, most autoimmune patients are - you guessed it - female. So you need to multiply the imaginary patient bias by the gender-defined bias.

 

3.1.1) Which brings us to cultural frameworks. All of the above behaviours are instances of "victim blaming." So long as we live in a world in which we believe no one should receive help because they "brought it upon themselves," we will not receive better healthcare - no, not even those of us which were sc*ewed by our genes.

 

Sorry, this may be more of a rant than an answer! Hope it is of some use though!


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#856836 Coconut Flour Biscuit Recipese?

Posted by ButterflyChaser on 03 March 2013 - 04:58 PM

Thank you! I made her scones w/o chocolate chips, and served them with laban and blueberry preserve, and Italian hot chocolate (read: bitter-sweet hot pudding). They were so good that my non-gluten-free friend asked for some to bring home. Score!!!


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#855594 College Dating

Posted by ButterflyChaser on 23 February 2013 - 09:38 PM

I am not sure if non-teens are allowed to post here - if not, I ask the mods to delete this.

 

But if we are, then here's my two cents. One of my Ex-s was celiac. Super-sensitive celiac, and lactose intolerant. I was not gluten intolerant at the time. And you know what - it wasn't a problem at all. I got myself informed, he picked the places where we could eat, and when I made something for him I was sure to use gluten-free-only utensils and pans. I became pretty good at gluten-free baking - which now turns out handy, and it got me used to reading labels.

 

I only had gluten-free food (and DF food, which probably didn't help with my current soy reactions) when I was with him so that he could take a bite if curious. I only wished he didn't feel like he had to apologize for feeding me Udi's bagels in the mornings - because I honestly couldn't care less for what was on my plate, since I cared about who was near me.

 

And no, we didn't break up because of celiac LOL :) but I don't speak behind people's backs -_-

 

Look for celiac-friendly places, go there in advance, and make your pool of "dating spots" to use when necessary. Learn to cook together if possible (assuming you're not in a dorm) - that can be a great date, actually. Speak up, and be confident. If she likes you, she'll want the best for your health and peace of mind.


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#855591 Strangest - But Positive - Effects Of The gluten-free Diet?

Posted by ButterflyChaser on 23 February 2013 - 09:17 PM

I thought I'd give a shot at creating a positivity-thread, focusing on unexpected benefits of adopting the gluten-free diet. :)

 

In my case, I got longer lashes. I have to keep my eye glasses lower on my nose than I used to, because my eyelashes "scratch" the lenses. Kinda funny. But keep it a secret, lest this should feed the 'fad diet' rumor!  :P

 

Anyone else had funny-good side effects?


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#854498 Did You Have Hypoalbuninemia? How Did You Recover?

Posted by ButterflyChaser on 17 February 2013 - 07:41 PM

Thanks! How do I know what enzymes I should try? What have you been taking (I assume it would not be the same for all people).

Diana - when you say "rotational diet," do you mean just waiting for four days between eating the same food again? Does this have to apply to all foods, non excluded (eg. my baby lettuce, or the milk in my coffee)? I know my mum had to bring me up with this method because apparently if I hate anything for a couple of weeks then I'd react to it, but I was too small to remember -_- .
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#852475 The Song Name Game

Posted by ButterflyChaser on 05 February 2013 - 08:06 PM

Black Celebration - Depeche Mode. (also title of my favourite album in preschool years :blink: )
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#851903 Mislabeling Medical Illness As Mental Disorder

Posted by ButterflyChaser on 02 February 2013 - 08:25 PM

Takala - moderators - I wonder if that APA article could be made a sticky in the pre-diagnosis forum?

"Excessive preoccupation" - you've gotta be kidding. When did fear and C. cease to be natural survival/feedback mechanisms?

It's not just "wheat lobbyists," though - it is also psychotropic drugs lobbyists: preoccupation should not be part of a functioning human being, therefore we shut it down with drugs, and persuade otherwise mentally healthy that "some people need meds to just function." Yes, some of them do, poor souls - not 10% or more (some say 20%) of the population.

Because if "mental health" drugs are prescribed to address actual (neuro)psychiatric disorders, then the US is the county with the scariest ratio of neurological/psychiatric/cognitive congenital-and-or-acquired damage on the face of the planet. So it's either that, in which case Houston we have a problem when if 1 out of 10 (I am using APA numbers here, so they are not likely to be exaggerating) of the nation's brains is malfunctioning. Or, there are way too many "mental health" drugs prescribed to way too many people.

Now, call it the emigrant's syndrome, but I still love too much this country that adopted me to believe that 1/10 of Americans in mentally challenged. That seems like adding insult to the injury that drug companies and an inept medical system is causing to the country.

Drug companies = Satan. More often than not.
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#843516 The What's For Dinner Tonight Chat

Posted by ButterflyChaser on 16 December 2012 - 08:30 PM

Made coconut-herbed pizza with cherry-tomato sauce, cayenne pepper, oregano, garlic, baby romaine and jumbo shrimp. Not bad, for a first time, but a pizza in a brownie pan is a bit sad.
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#843246 Miserable Student

Posted by ButterflyChaser on 15 December 2012 - 06:54 PM

First of all - hugs. There is nothing worse than a therapy that doesn't help.

Have you been tested for other autoimmune disorders? They tend to come in clusters, so that would be something I'd check. For example, many celiacs also have thyroid disorders (reason why I am here), though they don't cause mouth ulcers, as far as I know.

SO, yes, intolerances as shadowicewolf suggests, and I'd ask the doctor to check for other auto-antibodies, depending on the symptoms you are experiencing.
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#842251 Soy Intolerance?

Posted by ButterflyChaser on 10 December 2012 - 10:37 PM

Yes, tachicardia mostly gone, or gone enough to zumba. Tummy still so so.
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#840522 Always Bring Your Own Food!

Posted by ButterflyChaser on 02 December 2012 - 02:08 PM

Great post! I find it hard because mine is not celiac disease, but I do react to several substances (and several doctors agree with that). So people don't really take that seriously.

I think some of it is jealousy for the people around me, because I lost a lot of weight. When they are dieting it is like, "oh US dieters". I always say that I am not dieting, as long as I dont eat gluten or corn, I lose weight. I just love to rub it in and enforce the fact that i have food sensitivities im not trying to get skinny or just cut out something that makes me have a little tummy ache. Grr


Amen!!!! I get that all the time. "Oh, you're one of THOSE non-starchy people..." Well, uh, thanks for reminding me how much I miss baking since my doctor decided I have to be grain-free at least for a while. Or would you rather me give you an in-depth description of what will happen in your toilet bowl if I eat outside my doctor's plans? I think the rude people are only those who feel that out taking care of ourselves somehow "judges" their *not* taking care of their eating habits.

But I am getting better, thanks to this board: when a random date asked me why I refused to share his chocolate, I laughingly explained that soy lechitin makes me so hyper that scream at people (sad, but true), and I'd rather avoid that on a first date... :P
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#840427 I Found This Very Interesting

Posted by ButterflyChaser on 01 December 2012 - 08:25 PM

As a European who is living in the US, and who has had experiences with health systems in both contexts, what I noticed is that US doctors are much more prone to attribute physical symptoms to psychic disturbances. I got months of "it's all in your head," "you're just stressed out: here, takes some valium," "you have an ED," and it was only once I went back to the EU that someone bothered with immunologic tests. I still wonder why they use such procedure.

I was a total wreck, psychologically as well, and started seeing a psychiatrist when I was there for help coping with chronic disease. He calmly looked at me, and said: "I first want these and these and these tests to figure out what's going on physically; only afterwards we can ponder whether it is necessary to treat the psyche, and how." In other words, he wanted to see first what physical imbalance was causing the psychological imbalance, and fix the body first, and work on the mind accordingly.

As for allergies/intolerances: I have been tested multiple times over the years, so I have seen reactions (egg whites, kiwi, pineapple) disappear after a few years of discontinued use. My allergologist tested me for a gazillion things last time, and I spent a whole day in the allergy division. I was having reactions to certain types of cheese and she tested me with samples of THAT specific cheese. Nothing came up, but since the symptoms persist she didn't say it was "all in my head," but explained to me that there are 1) reactions to industrial food additives that may be very difficult to catch; 2) one-off real reactions in spite of lab results; and 3) some cases, like mine, in which it is an "accumulation" issue: my body reacts to repeated exposure to certain substances, and the testing is not able to reveal that. It does feel a bit better for a patient to know that sometimes it's just difficult to diagnose.
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#838750 Orthorexia. Might Apply To Some Of Us.

Posted by ButterflyChaser on 24 November 2012 - 07:52 PM

I agree that this is yet another book stemming from the labeling mania that characterizes an era and a society insecure about its own cognitive/interpretive skills. But I am more bothered by something else, which is not the information about diets, which may be interesting, but the underlying assumption of the whole book:

a) this interpretation is politically problematic, to say the least. It pathologizes behaviours that have as a goal a person's health; conversely, it labels as "normal," and, since we live in a highly conformistic society, as "desirable," behaviours in which the individual acts on autopilot, and, in this case, eats without paying attention to the messages of his/her body.

I think I just saw mindfulness flying out of the window. This writer deserves a gold star for the silliest method of treating eating disorders, if that was the goal of this book.

Why do I say it is "politically problematic"? Because someone is going to benefit from a stigma on people interested in making healthy eating choices. And it's not the author of books like this, or ED therapists. It's companies that produce food-like substances that make us sick. I'm sorry, I've got a problem with that.

B) Such a sloppy and catch-all definition is actually dangerous in clinical settings. The lack of preparation of medical staff leads them to rely on protocols, and lists, only, rather than using critical and analytical thinking when making a diagnosis. If you diagnose and treat by "ticking all the boxes," chances are you're treating a piece of paper and not a patient. That. Is. Just. Dangerous. There are tons of people on these boards that have gone through years of misdiagnosis because of such mentality.

When it comes to psychic disorders that kind of labeling is just a disaster waiting to happen. I was sick for over six months a couple of years ago, losing weight, unable to sleep, tortured by D every time I ate, and hyperkinetic (unable to sit still, I was so restless I would walk for hours aimlessly trying to tire myself so that I would sleep, to no avail). I went to the doctor who know how many times, and their "diagnosis," done without any tests or exams, was that I had an ED, even if I was asking for help because I did not know why I kept losing weight. I was going thorugh thyrotoxicosis crises, and if they had just been awake during their endocrinology class, they would not have sent me home with a lecture and Diazepam. I had three major infections, one of which was caused by E. Coli.

They just told me I had orthorexia.

They just told me I had orthorexia and let me alone with their reproach and meds as I reached a BMI of 13, because they liked to label me. Their love for labels almost killed me, and severley damaged my health. I have been in menopause since then, and I am not even 30. My intestine was left untreated, because "it was just orthorexia," for so many months that now it's a complete disaster even if I do not have celiac disease. My metabolism is completely messed up. My bones were damaged. I lost my hair. And I was wretched, because on top of my physical misery I had to carry the blame that "it was all my fault." It took me a year of therapy to come to realize it was not my fault, but a disease, for so long the ignorant medical staff brainwashed me with this "orthorexia."

For some reasons, in the US it is considered OK to comment on other people's diets. I am a foreigner, and that still shocks me, because where I come from that is a huge, giant, taboo, and you'd be branded as rude even for a joke about a friends' diet. So now, besides having to hear friends mocking and shaming me because I don't partake of starches during lunch (clearly, everyone wants to hear about my gas and D over lunch, right?), I also need a book on the cheap pseudo-medicine that almost killed me. No, thanks.

Books like these are not just bad, and insulting for people who are sick. They are dangerous. For people who don't have EDs, but also for those who have them: stigma and shame, which are sisters of "labels," are the causes, not the cure, of EDs. Sounds like the author needs to g back to med/psy school.

Thank you, Juliebove, for bringing this up.
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