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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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    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
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