Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Going Back To The Doctor
0

8 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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...

1

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,120
    • Total Posts
      919,468
  • Topics

  • Posts

    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
    • I have Celiac, Hashi's thyroid disease, Sjogren's Syndrome and Reynaud's Syndrome.  All have gotten better, inflammation wise, after 11 years gluten free.  I am very strict with my diet, never take chances if I feel the food is not really gluten free and limit the number of times I go out to eat.  I am not saying I never go out but it is normal for my husband and I to not see the inside of a restaurant for 3-4 months at a time and then I only eat at the places that have never glutened me.  I am lucky in that the state I live in has 3 restaurant chains that are run/owned by Celiac's, so they get it right every time. You have not been gluten free for very long, in reality.  It took me three years to completely rid myself of all symptoms related to the disease.  I was 46 at the time of diagnosis.  I know it is hard to accept that healing can take that long but you have to measure it differently.  Looking back, you should feel better than you did a year ago.  As time goes on, healing slowly takes place until you realize that certain problems have disappeared.  It is not as cut and dried as taking an antibiotic for an infection. http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html  Read this article on elevated c reactive protein. It is by Dr. Weil, who is a Harvard trained physician who chose to go the more natural route to healing people.  All his stuff is interesting.  Yes, your elevated level will most likely come down, as you heal better.  Pay attention to it but don't let it freak you out too much! 
    • Hi Calla, I think the safe answer is 12 weeks on gluten for a blood test.  I am pretty sure they say 2 weeks on gluten for the gut endoscopy.  But usually people/doctors don't want to  do an endoscopy before a positive blood test, so catch 22 there. There's a chance you still have active antibodies in your blood after 3 weeks off gluten.  But nobody can tell you for sure.  If you can get you doctor to test you now and in 9 more weeks if you are negative now, that might work.  If the doctor is willing to do 2 tests, that would be great. The best thing would have been to do all celiac disease testing before going gluten-free.  But sometimes it doesn't work out that way. The University of Chicago celiac center has an FAQ that answers some of your questions. http://www.cureceliacdisease.org/faq/i-dont-have-the-money-to-get-tested-for-celiac-disease-but-a-gluten-free-diet-makes-me-feel-better-is-it-okay-to-start-the-diet-without-being-diagnosed/ Welcome to the forum!  
    • Couldn't have said it better!  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,159
    • Most Online
      1,763

    Newest Member
    Anns
    Joined