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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Doc Gave Me Huge Celiac Packet...
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Hi all! I just received my biopsy results from the doc's office, and there was damage consistent with celiac disease. The nurse set me up for an appt. three weeks away to discuss everything, and then she said she was sending me information to look over in the meantime. I wondered why so long before the appt. (she said doc specifically wanted to wait 2-4 weeks to see me), and now I know. I got the packet today, and there is like 150 pages of info here! They have sent me all kinds of brochers from gluten-free manufacturers, info on celiac disease, business cards of support group people in my area, a dieticians card who specializes in celiac disease, book listings, gluten-free consumer guideline (to be purchased), and on and on. I have to say that my experience with this doc has been a mixed bag. I've only seen him twice (consult, then endoscopy--he is a GI). He seemed to pick up on the celiac disease diagnosis immediately--he was pretty convinced before the bloodwork, and when the bloodwork came back he said we just needed to make it "official" and document it. From what I have read here about many others experiences I feel I should be impressed that he picked up on this diagnosis so quickly. BUT,...he said to me that if I have celiac disease (before the testing), I don't HAVE to do ANYTHING, if I don't want to. He said I could file it away for now if I wanted and if I could live with the symptoms, but he said that he knew a lot of people who felt great on the gluten-free diet, and it might be something to consider. Well, now that I have researched celiac disease, I know I cannot continue consuming gluten, I know it is very dangerous in fact and just asking for trouble....that is continued trouble....I don't even know what all I am dealing with, I figure I need a bone scan and some blood work to be able to treat whatever deficiencies may have been caused by this disease so far. I am surprised at my doc's attitude about the diet. On one hand he seems so informed, on the other is he was so informed he would be telling me "YOu better not eat any gluten, girl!" I know when he suggested celiac disease, I was like "NO WAY!, I know I don't have a problem with wheat--I LOVE wheat!" (I didn't know better), so maybe he was just trying to ease me into it or not scare me, I don't know. I was wondering what some of your thoughts about this doc were based on what I posted here. Also, does a GI manage celiac disease, or does your family MD? I know the patient really manages it, what I mean is--who is your "go to" person about celiac disease? I appreciate the responses! :rolleyes:

Karina

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I'd give him the benefit of the doubt, since he does seem so knowledgeable. It may have been he was trying to emphasize that it is your choice, and not an _immediate_, _catostrophic_ danger to your health. (I don't dispute it's a danger to your health, I just mean that - if in your case the symptoms are not severe - you're VERY unlikely to die the day after you eat a slice of bread _because_ of the slice of bread.)

(I had one orthopaedist tell me that - with my knees - I should never run again. I left the office in tears. A subsequent (and better) orthopaedist, told me that - yes, if I keep running, I may need knee replacement surgery fairly early in life and that I will continue to have relatively severe pain. But he also told me that it is my choice and that I have to weigh for myself how much not running AT ALL will affect the rest of my life. It is a different situation, of course, because of the nature of the two different conditions. I'm just noting that some doctors like to remind the patient that the power of treatment is in the patient's hands.)

You might talk to him further about it, and understand where he's coming from before you look into switching doctors. It is possible he's good at spotting it, but not treating it, but it could be a misunderstanding as well...

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Hi Karina,

From my experience with celiac disease I drifted along feeling just okay, and then around the age of 43 I had a total melt down, after picking up some viral infection. If I hadn

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    • celiac disease is psychosomatic
      The following link might be helpful for others experiencing simlar psychosomatic issues with doctors. Although it's only for psychiatrists, I think it should be for all doctors! http://www.psychsearch.net/complaints/ The neuropsychiatrist I saw might fall into this category? I can checkmark:

       Falsified medical records
       No Biological Test for "Mental Illness" (no blood, urine or other lab testing)
       Breach of Confidentiality (...if she sends my medical records to my doctor or discusses them with him. I am requesting a copy of my records from this doctor t see if she sent anything to him.)
       Physical Illness Misdiagnosed as "Mental Illness"
       I was told I have a "chemical imbalance" (without any lab tests)
       Unethical Conduct
       Unprofessional conduct
       Something else that didn't seem quite right  
    • Allergy or Preference? Waiter asks
      At my local Five Guys, I told the counter guy that I had to avoid gluten for medical reasons. I was ordering a burger with no bun and some fries. He yelled back "Allergy Alert!" and every line cook immediately changed gloves and cleaned their work space. Will I go back? You bet I will!
    • celiac disease is psychosomatic
      The office is located in another city than where I go. There is no receptionist at the location closest to me meaning patients wait for the doctor to open her closed door to call their names for a consult. So, I would have to knock on her door which would really make her say that I'm sick since I keep writing letters AND showing up in person. The main office is too far for me to travel with road construction going on for the remainder of the year. I suppose I could mail the letter instead. But the staff is very irresponsible so it might be thrown away. The doctor probably told them that nothing needed correction in my records so ignore further requests from me. The other staff member I dealt with seemed normal, but I complained to the doctor about the staff member I dealt with today when she failed to update my phone number that I gave to her a few times (and which she said she updated), which resulted in me showing up for an appointment (I traveled a distance) one of the testers thought she canceled by leaving voicemail for phone number I no longer had. What I mean is I told the doctor that the staff member said she updated my phone number when the doctor asked me why I was there when I showed up for that cancelled appointment. Unfortunately, this staff member answers the phone most of the time. I'm sure she did what she could to make me look bad to the doctor to make her look good because I complained about her. I feel like scheduling an appointment with a psychologist to tell her what happened with this name calling. I'm sure it's against therapist code or I'd like a psychologist's feedback on this doctor's behavior. There are other patient complaints about her on the Internet how she laughs at patient's pain and suffering. I feel that's how she treated me. Update: The staff member called me back to tell me the doctor amended my report and she put it in the mail. I wonder if the doctor discussed what she said to me with another doctor who told her what she did was unacceptable in the medical field. I am hoping my report is amended or new negative comments are not added by the doctor to say I keep writing her letters or something in that regard.
    • celiac disease is psychosomatic
      The letter I am suggesting has nothing to do with the doctor.  I would type it and walk it to the desk when are in the building for your other appointment. 
    • celiac disease is psychosomatic
      Thanks. I'm not sure if the doctor will read another email I send and that's the way I'm told by staff to contact her. It will just confirm that I keep writing her letters although I only sent her one email about it! I already told the staff and her that I didn't want my medical records sent to any doctor's office, but I don't know if they will do it out of spite. It was scary talking to this doctor because she wouldn't listen or let me get a word in...I guess that's the reason why I feel the need to raise my voice at this office. When I requested a Lyme disease prescription from another doctor years ago before I knew I had celiac disease, this ignorant doctor told me not to come back to his office because there's no such thing as Lyme disease so only crazy people think they have it. I thought that was the worst experience I had with a doctor, but this experience was worse. I mean this neuropsychiatrist kept calling me a sick person over and over. It's so scary dealing with doctors like this. I really don't know how many other doctors may have wrote in my records that my symptoms are all in my head because celiac disease isn't real.   And my neurologist said this neuropsychiatrist was great. Maybe he says that about all the doctors he refers to patients to? I don't know if you call her personality psychopath since she appeared really nice during my consult, but she was thinking all this negative s*** in her mind at the time or different than she appeared to be.
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