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Mislabeling Medical Illness As Mental Disorder
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Yikes!!! We really need to rush through our doctor training program :D on celiac disease or any undiagnosed case of celiac disease will carry the SSD diagnosis and will likely never get the testing to get a diagnosis because it is all in their head, worst case scenario :ph34r: And here I though we had gotten past that "all in your head" bit.

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And here I though we had gotten past that "all in your head" bit.

Some Day.

Until then - - we change minds - - one at a time.

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This stuff is scary. They gave meds for GERD to my father because he was stressed; he was growing a huge aneurism in his aorta. :blink: They did it with me, too: "there there, it's just anxiety, you're in grad school; here take some meds" - I have a rampant hyperthyroidism which causes me bouts of thyrotoxicosis. WHERE did you get your MD, at Banana Republic School of Medicine?

I wonder, and this is something I see not only in the US, but also in other countries, whether the problems is not ignorance, but money. Tests are more expensive than meds, and I have known of cases in which doctors prescribing too many tests were 'fined.' In many countries (don't know about the US, but fill me in, because it'd be interesting) GPs receive some, ahem, 'support' from pharmaceutical companies, hence more prescriptions are given for pills as opposed to tests. This, or maybe our culture of speed and 'achievement,' creates the craving for a quick fix, so that the above interests find an eager audience.

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Here is the original link to the article in Psychology Today by Allen Frances, MD

DSM5 in Distress, the impact on mental health practice and research, mislabeling medical illness as a mental disorder 12/8/2012

http://www.psychologytoday.com/blog/dsm5-in-distress/201212/mislabeling-medical-illness-mental-disorder

This is about how the American Psychiatric Association (APA) which is working on its 5th version of a new Diagnostic & Statistic Manual, version 5, aka "DSM-5," wants to make it much easier to call patients with undiagnosed, chronic pain "psychosomatic" with broadening the definition of Somatic Symptom Disorder. Also as having "psychogenic pain." In other words, "head cases."

Please read. Thank you, Sora, for the link, I am going to add this to the other thread I have going on how several news magazines are attempting to lump gluten free dieting for gluten intolerance into the "eating disorder" category, and they quoted another National Institutes of Health rheumatologist who has worked for the Veteran's Admin and who also writes for Psychology Today in those articles.

We need to get familiar with what terms these crooks in the "wheat lobbyist" business are using next to attempt to belittle patients who are not being adequately diagnosed and treated, including, but not limited to, a change of diet to avoid that which makes them ill.

quote from the above Psychology Today article:

"The DSM-5 field trials produced results that should have scared off the Work Group. One in six cancer and coronary disease patients met the criteria for DSM-5 'Somatic Symptom Disorder.' Do we really want to burden and stigmatize seriously ill people with an additional diagnosis of mental illness, just because they are worried about being sick and are vigilant about their symptoms? Might patients with life threatening diseases become reluctant to report new symptoms that might be early indicators of recurrence, metastasis or secondary disease – for fear of attracting a diagnosis of 'SSD'?

"The Work Group is not proposing to classify Chronic Fatigue Syndrome, Irritable Bowel Syndrome, and Fibromyalgia within the DSM-5 'Somatic Symptom Disorders' section, but these patients and others with conditions like chronic Lyme disease, interstitial cystitis, Gulf War illness and chemical injury will now become particularly vulnerable to misdiagnosis with a DSM-5 mental health disorder. In the field trials, more than one in four of the irritable bowel and chronic widespread pain patients who comprised the 'functional somatic' study group were coded for 'Somatic Symptom Disorder.'

"To meet requirements for Somatization Disorder (300.81) in DSM-IV, a considerably more rigorous criteria set needed to be fulfilled. There had to be a history of many medically unexplained symptoms before the age of thirty, resulting in treatment sought or psychosocial impairment. The diagnostic threshold was set high – a total of eight or more medically unexplained symptoms from four, specified symptom groups, with at least four pain and two gastrointestinal symptoms.

"In DSM-5, the requirement of eight symptoms is dropped to just one. And the requirement of 'medically unexplained' symptoms is replaced by much looser and more subjective 'excessive thoughts, behaviors and feelings' and the clinician's perception of "dysfunctional illness belief' or 'excessive preoccupation' with the bodily symptom.

"That, and a duration of at least six months, is all that is required to tick the box for a bolt-on diagnosis of a mental health disorder – Colorectal cancer + SSD; Angina + SSD; Type 2 diabetes + SSD; IBS + SSD.

(bolding mine to emphasize how this potential definition of "Somatization Disorder" by the APA impacts patients with no formal diagnosis of celiac who still have digestive troubles with the gluten grain family)

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I will not tolerate this steady decline backwards, when we have the technology to make so many positive advances in medical diagnosis and testing. :blink:

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I will not tolerate this steady decline backwards, when we have the technology to make so many positive advances in medical diagnosis and testing. :blink:

Gotta say I have always thought (in recent years after so many issues/errors/problems that somebody has to be "bottom of their graduating class in medical school" :). I think I have had more than my fair share of those folks! My family thinks I keep picking doctors that are intent on killing me lol. I cannot understand any such motive.... I actually am a nice person lol. BUT I am increasingly assertive with these demiGods in the medical profession.

Sites like this one allow us to be better informed and more collaborative in our medical care. That is a good thing.

Sorry, I do not want to be a doc-basher but seems to me that the best ones retire or get burned out and the rest just keep practicing ('practice' being the operative concept). I had a nice supportive surgeon do my colonoscopy this week and yet he seemed to doubt (without saying so) that a gluten free diet would do much for me. It already is helping.

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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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islandmomma: You have to be beyond assertive! I honestly don't understand why doctors are so hesitant to call it celiac? Malabsorption can be assessed a multitude of ways so... malabsorption + careful observation of symptoms + careful observation of the resolution of symptoms and other benefits + reemergence of symptoms with the re-introduction of gluten....???? :blink:

I am actually very disgusted with all of the rumored and proposed changes to the DSM. Seems like another case of trying to simplify where simplification it isn't feasible... and in fact, quite clearly detrimental. Just because some doctors cannot accurately diagnose doesn't mean that the DSM should adapt and broaden the criteria. As for the plethora of other doctors who possess adequate deductive abilities... money money money. I digress... :wacko:

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If I had a dime for every time they failed to diagnose something or incorrectly diagnosed something or gave me a med that worsened the problem or that I shouldn't have been on to begin with, I'd be rich! Alas it can be really tough to sort everything out when you have more than one medical problem like I do.

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Thanks for that link Takala.

It's all about the money. :(

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If I had a dime for every time they failed to diagnose something or incorrectly diagnosed something or gave me a med that worsened the problem or that I shouldn't have been on to begin with, I'd be rich! Alas it can be really tough to sort everything out when you have more than one medical problem like I do.

My dad first, and now my mom are both dead because of these failures. Turns out my mom had not just ONE (multiple myeloma) but TWO (along with severe myelodysplasia) very rare disorders, and on top of that I'm still trying to get the labs out of her doc that will at least tell me her celiac genetics...she may have had celiac as well, judging from her symptoms and nutritional deficits...I battled her docs for FIVE YEARS to get them to take a closer look at mom...they blew me off.

Now, my daughter-in-law is scared to death of these new diagnostic guidelines. She has Ehlers-Danlos syndrome, and severe scoliosis in her spine such that her hips are thrown cockeyed. She suffers a LOT of pain and WILL be in a wheelchair somewhere in her future...now she finds out that she is going to be labeled with a psychological problem and possibly not treated.

It all makes me sick. And they wonder why we are turning to Doctor Internet for help? :huh:

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http://www.psychologytoday.com/blog/dsm5-in-distress/201301/bad-news-dsm-5-refuses-correct-somatic-symptom-disorder

After DSM-5 is published in May 2013, you can be tagged with an SSD diagnosis if you are referred to a mental health professional with at least six months of one or more medical symptoms – either diagnosed or unexplained – and you also display what the professional regards as a "disproportionate or maladaptive concern" for your symptoms and the inability of your doctors to help you. Interestingly, SSD (as defined in the May 2012 draft) can also be applied to caregivers and to parents of sick kids if they are perceived as over-involved in the symptoms of those for whom they have caregiver responsibility.

Bolding is mine.

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Thanks for pointing this out, Sora!

Whose definition of "disproportionate or maladaptive concern" are we going to be using? Furthermore, what makes "their" (I'm assuming medical personnel) definitions more accurate and applicable to my life than mine? Their schooling does not catapult them into knowing who I am any faster than a person who has not had the same training. Unfortunately for them, they gotta know me before they know my illness.

I very very very much dislike the hierarchical slant this "revision" of the DSM seems to embody.

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I nearly died (I coded) 2 months ago from a bad mix of prescriptions. It was my third close call but was the one that almost did me in. I was diagnosed as bi-polar 4 years ago and was on a lot of psychotropic meds. In addition to that I was on meds for fibromyalgia, celiac, rheumatoid arthritis and Lupus. I also have CLL. I was always transparent with my doctors about all my meds and updated my med sheet regularly. I am now off all meds except those absolutely necessary (like BP meds). I am NOT bi-polar (just normal everyday crazy). I take naturopathic remedies and see my chiropractor regularly. Before my near death experience I was too doped up to know what was causing what. I constantly fell and that caused many small fractures. I am happy to say I've never been clearer and haven't fallen in months (knock on wood). I feel a lot of pain but prefer it to being a non-brain craving zombie. Hope this helps. Anyone wanting a more detailed version of my story can friend me (if you already haven't) and see my previous posts. Most on Tickly My Elbow thread.

Sending positive energy and healing hugs to all,

Loey

P.S. Stay safe in the storm and STAY OFF THE ROADS!!!!!!

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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