celiac disease is psychosomatic

[Gemini 871]

1 hour ago, sella said:

Thanks, I'll check out the information in the link.

Do you remember how long you were on a gluten-free diet before your vertigo disappeared? I have been on the diet for 2 years, but I might be glutened from time to time since I am not an expert food label reader. My dizziness still persists.

It took all of 3 years before ALL of my symptoms resolved and it was the neuro ones that were the last to go.  If you have been careful about your diet, then you may not be getting glutened as much as you think.  It sounds like you have been careful because you are questioning things you should question to get clarification on.  I am sure if you were doubtful, you would refrain from eating something until you know for sure.

Neuro symptoms can last for much longer than other symptoms.  Please be patient because my last neuro symptom was the one that took 3 years.  Have you been tested for vitamin deficiencies?  The B vitamins are important for neuro health, especially B12.

[frieze 131]

CoQ10 deficiency can also cause balance issues.

[Gemini 871]

3 hours ago, frieze said:

CoQ10 deficiency can also cause balance issues.

...and CoQ10 deficiencies can occur in those taking statin drugs.  Really important to monitor that if you are on statins.

[notme! 344]

On 5/3/2016 at 6:40 PM, sella said:

I haven't been on a gluten-diet for as long as you...6 years. I may have bee undiagnosed and untreated for more than 25 years since i had signs that went back to chidhood. Yes, I have balance/anxiety/neuro issues. I know anxiety is connected to damage in intestines, but I don't know for sure if celiac causes balance/neuro issues.

 

i always figured it was attributed to vitamin/mineral malabsorbtion.  if you've gone undiagnosed that long, you might be in the same boat.  lolz, when i went to the emergency room, years and years ago, they told me my panic attack/vertigo/anxiety were caused by allergies.  sent me to a specialist who told me the thing in my ears which allow fluid to flow freely between inner and middle ear were swollen and too small for the fluid to travel (?) so they dosed me up on allergy meds and sent me on my happy way.  yeah, right.  i had to have my boss pick me up for work every day for like 2 months before i got the nerve to drive again.  driving in high altitudes are debilitating for me  - i can not do it.  i can take xanax if i wish to be a passenger (my husband, a professional driver, is so very patient with me, God bless him!) or if i hafta fly, yup, take a magic pill...

i don't know if it will ever be back to 'normal' so i just do what i can to get around it.  

[notme! 344]

On 5/4/2016 at 4:11 PM, Gemini said:

Thank you, Arlene, for making tea come out my nose!  I should have known not to read your post while drinking......

lolz sorry!   i do wonder how many charges people pay without question!!  not to mention, next time i go, i'm getting them to write down how many different labs/doctors/etc will be sending me a bill.  last time i got, like, 6 bills for one procedure.  i swear some of them just jump on the billing bandwagon....  

[Gemini 871]

19 hours ago, notme! said:

lolz sorry!   i do wonder how many charges people pay without question!!  not to mention, next time i go, i'm getting them to write down how many different labs/doctors/etc will be sending me a bill.  last time i got, like, 6 bills for one procedure.  i swear some of them just jump on the billing bandwagon....  

The whole thing has become so ridiculous, It's almost impossible to keep track of how they bill.  But I know what you mean.  Insurance companies now can charge an additional co-pay for discussing certain chronic health conditions. Hashi's is one of them.  So.........I don't discuss it with my new PCP.  I have a private doctor for my thyroid because it was the only way I got my numbers right. I can have the blood work drawn at her office but we don't discuss it at length.  She can have access to results. 

I am hoping this whole system can be fixed at some point because it's not going to be working very soon.........

[cyclinglady 1,663]

3 hours ago, Gemini said:

The whole thing has become so ridiculous, It's almost impossible to keep track of how they bill.  But I know what you mean.  Insurance companies now can charge an additional co-pay for discussing certain chronic health conditions. Hashi's is one of them.  So.........I don't discuss it with my new PCP.  I have a private doctor for my thyroid because it was the only way I got my numbers right. I can have the blood work drawn at her office but we don't discuss it at length.  She can have access to results. 

I am hoping this whole system can be fixed at some point because it's not going to be working very soon.........

My next hospitalization?  A big sign over my bed informing all staff that unless I am coding, not to treat me unless they take my medical insurance.  Internet access to verify all procedures and medications (risk vs. benefit).  A phone to call my cousin who is Director of Nursing out of state and can help me advocate for my rights!  (Last time she interviewed my surgeon when I had emergency gall bladder surgery while on a business trip.)   Keep my husband there all night to insure my safety.  The hospital errors I have experienced occurred on the night shift!  Staff is tired!    Maintain a log of visits and comments from hospital staff and to be maintained by me or my family/friend representatives.  Bring in all my own food to maintain my gluten-free diet.  Seriously.  Last time a the head dietitian told me I had to eat their meals after gallbladder surgery.  I told her I wanted a liquid diet for my first meal.  Staff argued and said I must follow doctor's orders.  I demanded to see the chart which read, "Progress to solid foods."  Yes, this is why unofficially, the CDC states that hospital errors are the third or fourth leading cause of death in the U.S.  

Did I miss anything?  

[Gemini 871]

I have not been in a hospital since I was 16 years old and that was 40 years ago!  I always say that the only way I am going in is if I am unconscious and have no choice.  The nurses are now doing 12 hour shifts because it's cheaper to pay benefits on (2) 12 hour shifts than on (3) 8 hour shifts.  Disgusting........I would not want to be the person treated by someone who is in their 11th hour of work in the middle of the night.  It just doesn't work well.  Not to mention the food thing......UGH!

No....you did not miss anything! 

 

[frieze 131]

actually i am nurse, love 12's, 10's are better!  and don't forget the pharmacy checking for gluten in meds.  lots of tired nurses because 12's turn into 14s and 16s.  or working 60 hours in a week because it is cheaper to pay over time, than the benefits for another nurse.

[cyclinglady 1,663]

 

actually i am nurse, love 12's, 10's are better!  and don't forget the pharmacy checking for gluten in meds.  lots of tired nurses because 12's turn into 14s and 16s.  or working 60 hours in a week because it is cheaper to pay over time, than the benefits for another nurse.

Please accept my apologies if you think I was attacking nurses.  My grandmother, Aunts and cousins are nurses and are/were dedicated to helping people.  

[frieze 131]

 

Please accept my apologies if you think I was attacking nurses.  My grandmother, Aunts and cousins are nurses and are/were dedicated to helping people.  

was not my thought, at all.  there are dunderheads in all job categories, lol.

[zenjess1980 14]

I believe this is very common.  When I asked my doctor (at the time) to test me for Celiac disease, after being told I had a psychosomatic disorder by other doctors I'd seen, my doctor hesitantly tested me.  It was positive. My doctor then told me that I could "probably" still eat gluten and be o.k. because Celiac is "so rare." I was also diagnosed with Hashimoto's, also common with Celiac.

9 years later, having continued to eat gluten, I was diagnosed with Non Hodgkin Lymphoma (which is apparently very common in those who have Celiac Disease.)

I am now 18 months in remission from Non Hodgkin Lymphoma, and I am 5 to 6 weeks gluten free. 

I see an integrative medicine doctor now who is awesome. It's really frustrating when doctors don't see the whole picture, the whole patient, or are quick to jump to the psychosomatic conclusions route.  I'm sorry you went through that too!

 

[sella 1]

I'm frustrated that many docgors still don't know as much as they should about celiac disease. Maybe they don't make the effort to study it since they think it's rare. 

Which test(s) confirmed Non Hodgkin Lymphoma? Does it show up in CBC with differential blood test? Since I have gone undiagnosed for decades. I don't know if I have it. It's good to hear that you're now in remission. I was about to ask a doctor for blood test prescription to see if I could have Non Hodgkin Lymphoma, but I was afraid it would make me appear I psychosomatic disorder.

 

This illness has changed me..or the way doctors have treated me has changed me somewhat. I feel irate when doctors call this psychosomatic and sometimes I raise my voice at them, which might seem like I''m yelling. I'm just tired of dealing with the same old over and over again  since doctorsr should know better. Does anyone else feel irate when this happens? I used to never feel irate (before seeing doctors).

 

[sella 1]

I called this doctor's office again to inquire if my medical records have been corrected. When I called to amend my records because there was inaccurate information, the staff member told me that I need to write my complaint in email to doctor. So, that's  what I did. The doctor wrote things I said that I didn't say, which changed the meaning of what I said so I wanted to correct that. I talked to a different staff member today who irritated me in the past by saying things she was going to do which she never did. Her tone of voice is condescending and argumentative like she refuses to help you or that's probably what makes me feel irate. Today she said the doctor wasn't going to commit fraud by writing something I told her to write. I don't feel irate when I talk to the other staff member who answers the phone. Anyway, this staff member said she printed my email for the doctor to read, and she'll reply when she wants to reply (never). I said that it's not the doctor's choice to choose whether or not to correct inaccurate information in medical records. I said I think by law, it must be done so if the doctor continues to ignore my request to correct inaccurate information, then I should probably file a medical complaint somewhere. Finally, the doctor called me back. She asked what was inaccurate when I said I wanted to correct the incorrect information. Then, I asked if she read my email. She said she did not have time to read patient STORIES. I said a good doctor would make the time to read a request to correct inaccurate information in a patient's medical record. Then, she said I'm sick to keep writing letters to her. I said I only wrote one email to her and it was because a staff member said that is how to amend the inaccurate information. She added that if I really had physical symptoms, I would not have been able to get a college degree or write letters to her. Although I explained to her during my consult that I took online classes and did homework in bed with lots of breaks, she thinks I must be pretending to have symptoms. I also explained during my consult that half of my dizziness and migraines are gone since being on a gluten-free diet. Yes, this makes sense why her office makes me feel so irate! I ended the call by asking if she was going to correct the inaccurate in my medical records. She kept rambling on how only sick people keep writing letters to doctor. Again, I told her I only wrtote one email to her and that's because her staff member told me to correct inaccurate information in record. The staff member recommended this instead of filling out a record amendment form, which I don't think they have. She said file a complaint like it was a joke.

Since my neurologist referred me to her when I inquired about help for my memory problems, I'm afraid she will tell him negative things about me. Her office is just across the hall from his. Doctors are more likely to take the word of another doctor over a patient. In contrast to this doctor, my neurologist is a real competent doctor. Do you ever think that sometimes doctors are crazy, but they get away with making others think it's the patient who is crazy because they are more powerful? This doctor is a neuropsychiatrist. I will never see a neuropsychiatrist again due to this bad experience.  My appointment with the neurologist is in another week. I don't know if I should briefly mention my bad experience with this doctor so he won't believe her if she tells him that I am faking my symptoms. It would be like I was faking my whole life if I was faking my symptoms. Maybe I could say something like the brain testing wasn't very helpful with that doctor since she assumed my symptoms were all in my head  because I graduate from high school and obtained a college degree in the past. I also told her during my consult that I received average grades in high school because I often went straight to bed after school not having chance to do homework.

This feels like abuse or abuse of power from the doctor. I wish I recorded the phone conversation with this doctor calling me names.

[kareng 2,318]

 

I called this doctor's office again to inquire if my medical records have been corrected. When I called to amend my records because there was inaccurate information, the staff member told me that I need to write my complaint in email to doctor. So, that's  what I did. The doctor wrote things I said that I didn't say, which changed the meaning of what I said so I wanted to correct that. I talked to a different staff member today. Her tone of voice is irritaing because it's condescending and argumentative like she refuses to help you. Todays she said the doctor wasn't going to commit fraud by writing something I tell her to write. I don't feel irate when I talk to the other staff member who answers the phone. Anyway, this staff member said she printed my email for the doctor to read  and she'll reply when she wants to reply (never). I said that it's not the doctor's choice to choose whether or not to correct inaccurate information in medical records. I said I think by law, it must be done so if the doctor continues to ignore my request to correct inaccurate information, then I should probably file a medical complaint somewhere. Finally, the doctor called me back. She asked what was inaccurate when I said I wanted to correct the incorrect information. Then, I asked if she read my email. She said she did not have time to read patient STORIES. I said a good doctor would make the time to read a request to correct inaccurate information in a patient's medical record. Then, she said I'm sick to keep writing letters to her. I said I only wrote one emailto her and it was because a staff member said that is how to amend the inaccurate information. She added that if I really had physical symptoms, I would not have been able to get a college degree or write letters to her. Although I explained to her during my consult that I took online classes and did homework in bed with lots of breaks, she thinks I must be pretending to have symptoms. I also explained during my consult that half of my dizziness and migraines are gone since being on a gluten-free diet. Yes, this makes sense why her office makes me feel so irate! I ended the call by asking if she was going to correct the inaccurate in my medical redords. She kept rambling on how only sick people keep writing letters to doctor's letters. Again, I told her I only wrtote one email to her and thaty's because her staff member told me to correct inaccurate information in record. The staff member recommended this instead of filling out a record amendment form, which I don't think they have. 

Since my neurologist referred me to her when I inquired about help for my memory problems, I'm afraid she will tell him negative things about me. Her office is just across the hall from his. Doctors are more likely to take the word of another doctor over a patient. In contrast to this doctro, my neurologist is a real competent doctor. Do you ever think that sometimes doctors are crazy, but they get away with making others think it's the patient who is crazy because they feel more powerful? This doctor is a neuropsychiatrist. I will never see a neuropsychiatrist again due to this bad experience.  My appointment with the neurologist is in another week. I don't know if I should briefly mention my bad experience with this doctor to him so he won't believe her if she tells him that I am faking my symptoms. It would be like I was faking my whole life if I was faking my symptoms. Maybe I could say something like the brain testing wasn't very helpful with that doctor since she assumed my symptoms were all in my head since I would have never been able to graduate from high school or get a college degree if I was sick. I also told her during my consult that I received average grades in high school because I often went straight to bed after school not having chance to do homework.

 

 

It

I am assuming United States- It has been a long time since I studied health info law, but I doubt this part has changed.  A doctor would not change the record just because you said its wrong.  They might make a correction if they remembered or had actual facts (like a lab test read incorrectly or appearing later).  What you are allowed to do is write a letter to be included in the record.  You need to put in larger letters at the top, something like "This note must be included with any release of information from my medical record".   I am not sure how it is handled with electronic releases these days.  You could contact a medical records department (ask for the release of info section)  at a large hospital near you and ask how they handle it.  Be nice and tell them it isn't a problem with their facility but you know they are the experts.  I would urge you to make the note short and not nit pick.  State the big basic facts that you don't agree with and don't worry about the little things.  People will not read a really long note or it will make you look crazy (in a bad way  )

 

And for the apt with your neurologist.  Don't bring it up, see what he/she says first.  Half the time they don't read all the little details or even receive more than a brief - tests run & results and maybe a brief summary.  You might be surprised, your doc might think the person is a bit of a jerk, but hoped you might mesh with them. I recently had my doc agree with me when I said I couldn't stand another doc that had been in her practice.  lol

[sella 1]

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.

[kareng 2,318]

 

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.

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. 

[sella 1]

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.

[sella 1]

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

 

[sella 1]

Actually, there is a place I could complain to about how my request to amend my record was handled. zthey really messed up onthis one. I think this doctor was too careless to set a HIPPA policy in place or doesn't pay attention to generic forms included to fill out with new patient forms. I'm debating whether or not to file a complaint. If the doctor adds derogatory remarks to my report, I will definitely file a complaint. I really should file a complaint for all the patients who are mistreated, but I don't need more stress in my life. I have found doctors like her create stress or sometimes it's best to say goodbye without further contact.

Can I Appeal if a Covered Entity Refuses to Make an Amendment?

Maybe. An institution must accept complaints about its health privacy policies and practices. Filing a complaint with an institution may not be the equivalent of filing an appeal of a denial of a request for amendment, but it may help if it forces someone new at the covered entity to review your request. However, some institutions may accept formal appeals. Consult the institution’s notice of privacy practices to see if there is an appeal method for a denial of a request for amendment. Talk to the privacy officer at the covered entity to see if you can obtain help.

You can also complain to the Secretary of the federal Department of Health and Human Services about how your request was handled. The Department’s Office of Civil Rights processes complaints. You can find information about the process at http://www.hhs.gov/ocr/privacy/hipaa/complaints/index.html.

You have another alternative. When a covered entity denies your request for amendment, it must tell you that you can request the covered entity to provide a copy of your request for amendment with any subsequent disclosure of the disputed information. In some instances, it may be important to make the request. Remember that the covered entity is not required to tell others about the dispute unless you ask.

 

 

[sella 1]

On May 24, 2016 at 1:50 PM, kareng said:

You might be surprised, your doc might think the person is a bit of a jerk, but hoped you might mesh with them. I recently had my doc agree with me when I said I couldn't stand another doc that had been in her practice.  lol

I received the amended records in the mail. I don' think the doctor even read my email with the amendment request since she only corrected one statement I never said...the statement I gave as example while briefly talking to her on the phone the other day. So, I called the office to inquire why the other statements I never said were not corrected. Fortunately, the other staff member answered the phone. I'm surprised she told me this, but it was the best therapy for me so maybe she was meant to say it! She told me she knows what I mean about that one worker because she has to deal with it, too! She said a new office manager starts next week and she gave me her direct emal address to complain about that worker. 

[TwelfthLady 0]

 

I'm mad that doctors aren't more educated about the symptoms celiac disease causes. Or they think it only causes diarrhea. I had other symtoms instead of diarrhea.

Very good point.  I've never had diarrhea as a symptom at all but had a confirmed (through biopsy) diagnosis.  LOL And the dumbass doctor when I asked him a celiac related question said: "Well it sounds like you've researched it more than me."  YOU'RE A DOCTOR! -facepalm- 

[SLLRunner 26]

@sella, have you thought of changing doctors? I would if I'd had those experiences that you describe.

In fact, I just changed both my insurance company and doctor because I got tired of being blown off, and my experiences were not as blatant as yours.

[sella 1]

I've had constipation instead of diarrhea myself.

Oh, there's no way I'm going back to this doctor. I didn't know how she was until I read her report at the end of testing, which took her 2 months to finally write. Why is it that doctors react like your'e a smart a** when you suggest for them to learn more about a condition (if they are making incorrect assumptions about it)? I know it has to do with pride, but they should expect that suggestion due to their ignorance. 

I was told to email the new office manager so I wouldn't get that same office worker on the phone. She was courteous in her email reply stating that she would talk to the doctor after the holiday weekend. However, after she talked ot the doctor, she stated that the doctor was unwilling to correct my report. I replied, "So, the doctor is ignoring my record amendment request (the request I made that she said I was sick for doing so)   to correct "I have never seen a GI doctor" because I have seen several GI doctors." There was other incorrect information...things she said I said that I never said as well. There is a difference asking a doctor to correct things you never said (writing it as fact) instead of changing a doctor's medical opinion. I don't get her response at all except she must be the crazy one.