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Going Back To The Doctor
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Thanks to everyone who replied to the "How to trust doctors" question. The different viewpoints help put a lot of things in perspective.

I made a doctors appointment for next Thursday. Basically, when I get glutened I have anxiety that really disrupts my life and take Xanax to overcome the really bad times. This doctor last prescribed that drug for me over a year and a half ago, so she refused to give me a refill until I go back to see her again.

We've never discussed the possibility of celiacs before, but I want to go into that appointment armed to the teeth with information that she will actually listen to. Other than my own observations (feeling better without gluten, getting sick with CC), what else can I take with me? What are the best articles/resources to print out and take?

Last time I saw her she was convinced that my anxiety was the cause of all of my stomach problems, because I told her that I feel the anxiety coming from my mid-section, and not my brain. She didn't have a reason for the anxiety though, nor did she bother to follow up on anything.

Cavernio mentioned crying after a doctors appointment, and I get exactly the same way. I feel so intimidated when I'm in the exam room, that my mind turns to mush and I can't remember any of the things I intended to talk about. I usually cry after appointments, because I was just so desperate for answers that never came. This time I want to be prepared and have physical documents with me so I don't forget anything.

Thanks for any help you can give. This forum is SO helpful and reassuring.

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Write down all of your questions ahead of the appointment. If you get emotional, hand them to the doc. Can you bring someone with you? They could take notes and ask the questions if you get too upset.

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At recent celiac conferences, speakers have emphasized that celiac disease may be classified as a neurological disease and not just a disease of the gut. You might use a keyword search on celiac and neurological symptoms to come up with some recent medical articles to show your doctor. Anxiety is definitely a symptom of celiac disease, as are depression, migraines, seizures, etc. Many doctors are unaware of the most recent studies and literature on how celiac can be the cause of neurological conditions.

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Thanks. I'm definitely going to write some things down, and also ask my husband to give me his perspective of how different I am off gluten.

I'll google around for some of those articles. I had migraines for years, and they were getting more frequent all the time. Since I stopped eating gluten they went away within THREE DAYS! That was my first clue that this was the problem. Also, my first symptom of being CC'd was a migraine - the bathroom issues came later.

EDIT: Doctor called in a prescription for me anyway, because I'm planning to see her next week. That's a relief!

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All went fine with the doctor. She ordered blood testing (which I talked about in another thread), and she seemed legitimately interested in hearing about my gluten free journey, and was happy that I felt better.

They also have a neat new system at her office where you can logon to a website and see information from past medical appointments and blood work. I'd never seen the actual results of blood work before, but always had a call from the nurse who said everything looked okay without going into detail. Well, I noticed that some of my levels were low (only just below the normal range) on some of tests that were done a few years ago.

For example, my A/G ratio was low. So I googled A/G ratio to find out what that meant, and came across this from the first result:

Low total protein levels can suggest a liver disorder, a kidney disorder, or a disorder in which protein is not digested or absorbed properly. Low levels may be seen in severe malnutrition and with conditions that cause malabsorption, such as Celiac disease or inflammatory bowel disease (IBD).

It was right there in front of my face the whole time. Sigh...

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All went fine with the doctor. She ordered blood testing (which I talked about in another thread), and she seemed legitimately interested in hearing about my gluten free journey, and was happy that I felt better.

They also have a neat new system at her office where you can logon to a website and see information from past medical appointments and blood work. I'd never seen the actual results of blood work before, but always had a call from the nurse who said everything looked okay without going into detail. Well, I noticed that some of my levels were low (only just below the normal range) on some of tests that were done a few years ago.

For example, my A/G ratio was low. So I googled A/G ratio to find out what that meant, and came across this from the first result:

Low total protein levels can suggest a liver disorder, a kidney disorder, or a disorder in which protein is not digested or absorbed properly. Low levels may be seen in severe malnutrition and with conditions that cause malabsorption, such as Celiac disease or inflammatory bowel disease (IBD).

It was right there in front of my face the whole time. Sigh...

do not take the blame! you are not the medical prof. here she is. She should have noticed! Please gently point this out to her, it may benefit her next patient.

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do not take the blame! you are not the medical prof. here she is. She should have noticed! Please gently point this out to her, it may benefit her next patient.

I'll bring it up with her at my next appointment. I remember at the time she just told me to eat more protein and less carbs - which was along the right lines. I just don't think the levels were low enough to raise any alarm.

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Just remember that if the blood tests being ordered include a celiac panel, that you need to be consuming glutton for some period of time for the blood test (or an endoscopy) to be valid.

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    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
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