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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New Doctor + Infuriating Discovery
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Adalaide    361

My last appointment with my regular doctor ended with me feeling like he was really just trying to drug me up. I was frustrated and frankly, pissed off, but waited to see my neuro before I did anything else. That was a bust, and I just decided to find a doctor who didn't make me feel like every appointment was more difficult than putting my head through a brick wall.

 

So I went today to see the first doctor I had an appointment with. It was at a clinic and I just was seeing whoever, and I didn't have much hope. I got what little joy I could out of the day when I saw I have lost a few more pounds, before my day was ruined by another doctor. Instead, I saw a PA who treated me like a whole person. He asked questions, ones that made it clear he reads and researches things and attempts to stay current on medical stuff. He actually physically examined me!

 

He said that he can't promise miracles, and he can't promise a cure, but he will promise to do what is within his scope to help me find answers. He says it may well be something incurable, and that most people wouldn't want to hear, but I told him all I want is an answer. If there is help, I'll take it, if it hopeless after that, I will accept it.

 

The first thing he wanted was my medical records, all of them, for the past 4 years. He said he will read through them (not a light task) and then I will follow up. This led to my infuriating discovery. I picked up (in part, what wasn't archived that I am waiting for) my complete medical records from my regular doctor today. Now, this isn't just a doctor's office but a clinic. I usually see "my" doctor but sometimes see his PA and sometimes have to see another doctor. I decided to read through my medical records.

 

There was much swearing (I can't even begin to describe how colorful I was) when I read what was there from last spring. When I freaked out last year about being told I should see a shrink I had no idea what kind of psycho babble that person put in my records. He actually said that I have a psychological/functional issue, and that he suspects my main issue is depression. He goes on to note that my entire issue is somatization. I was quick to google that one and once I realized what that was I went into a complete fit of rage.

 

My chart for 4 years is peppered with depression, depression, depression. I'm not depressed!!!! I have days I'm sad, who the hell doesn't? I am otherwise a happy person though. I am happy with my life overall and while I did at one point in my past struggle with depression, I do not now. I'm both sick, and frustrated and the moronic "professionals" have mistaken my frustration with being ill for depression. Other than picking up my medical records, I have no plans to set foot in that clinic again. I wouldn't grant any one of them the privilege of kissing the fattest part of my ever too ample arse.

 

There are plenty of other things in there to piss me off, but for anyone who reads this, take it as a warning. When your doctor treats you with respect to your face, make sure to get complete copies of your medical records periodically and not just tests. You want to know what they are actually saying about you.

 

In a few days, once I can get my head around this and think straight without seeing red I will write a letter to the doctor I saw most frequently, as well as the psycho babble doctor. They need to know that what they are practicing isn't medicine, and sure as hell isn't in line with any medical oath.

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mushroom    1,205

I totally agree with you, Addy, that most of us would have the hairs rise on the backs of our necks and their radiators boil over if we could read our entire medical records, cover to cover, to find out not only what we have that hasn't been told to us, but what has been said behind our backs about what we (incorrectly) have or do not have, about the states of our various minds and various gratuitous comments about our body shapes and sizes,, dispositions (i.e., not pliant :D ), etc.  I am afraid my medical records are peppered with letters to said doctors informing them of their errors and I am on many a beotch list (or at least, I hope, a do-not-mess-with-this-lady list :ph34r: ).  I have written letters to HMO's about disrespectful treatment, about incompetence, about outright lies, even demanding that the physician not be paid for the non-service that was rendered.  Often?  No.  But when I am really PO'ed, definitely.  I am usually right at the head of the line demanding copies of my medical records. :)

 

It is really the most discouraging, I think, to be written off as a headcase, imaginary symptoms, depression (hell yes, sometimes we have good reason for it, but situational depression, not pathological! -- there is a difference.)  How wonderful that you have someone who is willing to actually read your records; I envy you.  Dare we hope he has knowledge and wisdom to go with it?

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cahill    189

When I fired my last PC  I got a copy of my records ,,, It was ,,to say the very least ,,  an eye opening experience  . Inaddition to the comments ( basically  saying I was a nut case and needed drugs to calm me down  ) My former PC  had actually falsified  my medical records to cover her ass.  She knew I had a case to charge her with malpractice so she doctored ( :P pun intended )my records. Thankfully my GI doc and Endo had most of my ( untempered with ) records .

I found out recently that she now longer practices medicine THANK GOODNESS !!!

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Adalaide    361

I have four years of proof on my shelf that an entire clinic of doctors called me a headcase instead of even attempting to treat me. I am still trying to get my head on straight after this. I can't sleep and am still so angry I don't know how to begin to deal with it. Apparently I'm so bats$#& crazy I'm making myself physically ill and should see a shrink....... deep breaths.....

 

My new doctor, who I have ever intention of sticking with, seems quite knowledgeable. When I went to my old doctors convinced some time ago that my symptoms were consistent with MS and was dismissed out of hand, then was further dismissed when my MRI (with my unassociated brain crap) came back clean, I dismissed it also. I asked doctors to do a lumbar puncture, they wouldn't. This new doctor said that especially because it is only one side of my body that it could very likely be lesions on my spinal cord in my neck and it could be MS. I was stunned by this, having nearly forgotten that I had pushed so hard for testing.

 

This new guy is a smart cookie. He knows what celiac is. He talked about how hard it is to follow the diet (and lets face it, it is if you aren't us!), asked how I was doing with it, asked how I was diagnosed, and generally said things that didn't make him sound like an expert, but he knew enough there to make me comfortable. Apparently he has a doctor friend who has celiac. (um... score!!! :D) He said he has ideas, and he is going to roll them around and read my records and see how the pieces come together and see where to go. He also wants me to bring home a pulse-ox-thinger to make sure I don't have sleep apnea. At least it is just a thing for on my finger, but he wants to rule out that as a possible contributor to my problems. Dude wants to leave no stone unturned.

 

I am going to try to think happy thoughts and attempt a few hours of sleep before my exciting day tomorrow of tracking down more medical records and going to the post office. If there is anything that can distract me, it'll be a 30 minute line at the post office followed by an hour long bus ride home from dropping off my Jeepy trying to avoid creepy guys.

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Gemini    785

I wouldn't grant any one of them the privilege of kissing the fattest part of my ever too ample arse.

 This nearly made me fall out of my chair laughing!  I love your attitude, Addy!  You are 100% correct about what these doctor impersonators put in medical records.  And now that the government is meddling in our personal affairs, it gets even worse.  There are many things I never divulge to ANY doctor, not that I go often enough for it to matter.  They do not need to know every last thought and practice you have.  None of their business.  I had one GI doc, the last one I ever saw, tell me gently while patting my head that I needed to see a shrink because obviously I had problems in my life that caused my tummy to hurt.  Deression is so overdiagnosed in this country, it's criminal.  They can test for depression but never do and then try and ply you with drugs.  Drives me insane.

 

Make sure you write a scathing letter to this knucklehead....if you do as spendid a job as you did here, it'll make HIS blood pressure soar and rightly so.

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 After 30 years of celiac I had lost my ability to make cortisol to deal with stress.  One's system is depressed, the doctor said, when this is the case.  It was said to be without regard to emotional things going on besides.  The disease puts the body in a depressed state..  I received herbs to help with adrenal support and a healthy helping of vitamin B.  First and foremost celiac is physical.  The mind isn't without the body though. 

 

Diana

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Takala    413

Good Grief.  You, Adalaide, are Not_Depressed. 

 

I guess, in retrospect, I was fortunate that when the Neuro from Hell™ tried that stunt on me, to my face, implying I was making up my ataxia symptoms, bless her heart, even though she had tested my reflexes/coordination on the initial exam a year earlier, and something obviously was wrong,  I had the test results showing actual physical damage to my brain and spine,  and she ended up making an excuse to walk out of the exam room -  and never had the nerve to come back.   When my hands first started going numb off and on, decades ago, the first set of docs also tried this IAIYH sh*t until they found the c spine problem,  I can't believe how many of them have been told " bone loss, c spine problem" and they won't even believe THAT.  I need a freaking hologram of my current PCP standing there next to me waving the cat scan and mri results at them !  Let them walk around 24 hours in this body, and explain how I can do anything, other than to be extremely disciplined to diet and physical therapy, and otherwise athletically gifted -   jerks !   Excuse me for not being scrawny like your stereotypical gut disease patient that you would want to put on some sort of horrid FIBER SUPPLEMENT and an addictive mood happy pill !  

 

Idiots.  Really.  

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