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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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

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I have noticed on the forum that we have different ideas of what we want in health care.  Sometimes it is hard to support each other when that is the case.  So on this occasion of that I need to find a new MD (mine retired) I have been thinking about what I want in a caregiver.

 

Here is my list:

 

Respects the patient considering their input is valid.  (After all who knows they symptoms better than the patient?)

 

Listens to the patient:  This means that if they are unsure they will ask questions of the patient, and go hunt up information!  They believe the patient is NOT making things up.

 

They are trained in health care and continue to learn.

 

I like doctors that will try to get to the root of the problem rather than dispensing drugs to mask the symptom.

 

I believe nutrition to be at the basis of healthcare, because of human's design, what they eat and what they do with their body would be most important.

 

One who is not afraid to make the patient responsible for their own healthcare.  By this I mean they ask the patient to make changes in diet and exercise that will improve their life.

 

One that get excited as they realize improvement in their patients.

 

I feel that one that truly cares about the patients can do a better job than a doctor that is trained by the greatest school.

 

 

 

What's your list?

 

 

 

 

 

 

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I found a new doctor that I think I'm pleased with last summer, so this is a recent experience for me.

 

I think that due to the nature of our disease we require someone who will treat us as a whole person, rather than compartmentalizing our symptoms. That said, they also need to not be dismissive and attribute every last thing to celiac as that simply isn't helpful. Sometimes, the most seemingly unrelated things are related, as we've all learned and more doctors need to.

 

Someone who accepts that I am knowledgeable about my diseases (probably more than him), and that when I have a firm direction with where a new diagnosis may go I will hit the internet and research the hell out of it. If a doctor is threatened by my knowledge, they are far too arrogant about a piece of paper with their name on it for my money.

 

I also like a doctor who continues his education. Whatever means that is through doesn't matter, so long as it is valid info. I just want my doctor not to be left in the dust because they've been out of med school for 20 years.

 

I don't do pill pushers. I accept that I may have to take some medications, but I've had doctors telling me to take pills for things they couldn't diagnose. Unless I have a firm diagnosis of something and a doctor can explain to me why I need a prescription and how it will help me, I'm not interested, and he needs to respect that.

 

This one is very important. Compassion and respect. I have been treated so poorly. My medical records list somatization disorder, I was told all of my symptoms are from anxiety, and about 3 months before knee surgery I had a doctor tell me I was being "too sensitive" in regards to describing my pain (right before I found a new surgeon). Under no circumstances will I tolerate being disrespected by someone I am paying to care for me.

 

My list isn't really different than yours. It took a little trial and error for me to find a good doctor I like. After trying a few doctors I started looking harder at what I wanted. After looking into a lot of things, and at the time not having insurance that would cover a functional medicine doctor, I decided I would settle on a DO over an MD. This probably will sound terribly discriminatory, but I started looking up pictures of every doctor in my area that accepted my insurance, I was looking for someone 35-45ish. Old enough to have a little experience under their belt, young enough to not be out of touch or out of date. I scored when the best clinic in all of Utah had a doctor that fit that rather odd criteria, made an appointment and he happens to be great. If he wasn't I had a list to work down. Now that I think of it, the only other doctor I've ever had that I liked was a DO, he was my doctor for my girls and me after their pediatrician ran off to CA.

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I will choose a DO over an MD every time.  In my opinion, they have a more well rounded way of looking at a problem.

 

Colleen

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I will choose a DO over an MD every time.  In my opinion, they have a more well rounded way of looking at a problem.

 

Colleen

I also agree.  DO's are taught to treat the person as a whole, and although some MD's do that as well, it is harder to find.  I will pick a DO over an MD when I am doctor searching.

 

Edit:  I feel I really should add more to this.  I was always the "sickly" one in the family and I have seen many, many doctors over the years. Some ok, some good, some bad, a few really bad.  Luckily my 6 doctors I keep up with regularly are all really good and I like them a lot.  

 

Must haves in a doctor:

 

My doctor has to be able to speak to me at my level.  I am in between their knowledge level and the average person, so if I ask for specific details they need to talk to me in more complicated terms when I ask.  I once had a doctor talk to me like I was an idiot, and when I let him know about my scientific background and asked for more detail, he still gave me the most comically ignorant sounding explanations, so I fired him right there.

 

They need to know what they are doing and display competence and a willingness to broaden their knowledge.  My immunologist will go into great detail and answer any question you have, and my rheumatologist will consult research or other doctors when he puts me on a new medicine because the treatments for my diagnoses conflict each other some time.

 

They need to listen to me and believe what I say- treat me like a human being and family member.  My rheumatologist's office is always busy but when you get in the room with him, it is like you are the only person there.  Same thing with my PCP.  Especially places like my immunologsts office where I am there at least every 4 weeks, developing a relationship with the staff and being treated like family is great to me.  They all know I am a germaphobe and cater to it.  

 

They need to treat the whole me, not just the one system I am seeing them for.  I don't like to take pain medicine unless it is for an acute problem. I like to fix the cause instead.  I already take like 18 pills a day so if they want to add one more it better be for a good reason we can't address another way.

 

Things I can compromise on:

Distance- all my specialists are at least 30 min away, two are an hour plus.

 

Apppointment/waiting times-  When I go to my rheumatologist he is sometimes up to 90 minutes behind schedule.  I always see someone pitching a fit in the waiting room.  But there are shortages of these specialists, I waited six months for a new patient appointment, and people drive half a day from out of state to see this doctor.  Seeing that doctor is still worth it.  Same thing with my primary care doctor- if you want to be squeezed in on days you are sick and they are full on appointments, don't complain that you have to wait 45 minutes to be seen because one of those other patients probably has something terrible going on.  

 

Them not holding my hand-  A lot of people don't take charge of their own health care.  Before I go to appointments I write down what refills I need and questions I have.  If I phone them with a question and don't get a call back, I call them back myself.  You really do need to pay attention to your medicines and what is going on or you can create a dangerous situation for yourself.  Don't just assume it will be done.  While working in pharmacy I saw so many people with a lackadaisical attitude about their own health care, and I feel bad for those people because they are compromising their health. 

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I chose my primary care doctor based on the school she attended plus this description she gave of herself:

"It is a joy and a privilege to partner with my patients in helping them achieve their best health possible. I enjoy long-term relationships with my patients. A good physician must combine empathy with good listening and communication skills and a commitment to lifelong learning."

It was a great choice. She had me tested for celiac based on 23andme genetic results plus migraines. She truly does partner with me - we decide things together.

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Not having a know it all attitude. If a doctor is willing to say "I don't know but I'll find out" that is just wonderful. Almost every doctor I've been to has told me there is notrhing wrong or nothing they can do, and I trusted them so I just got worse and worse. I'm tough - I can take a lot of pain and discomfort - and I let things slide too long on a doctor's say so.

 

Otherwise, I like all or your lists.  :)

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