Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Going Back To The Doctor


kittty

Recommended Posts

kittty Contributor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

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.

rosetapper23 Explorer

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.

kittty Contributor

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!

kittty Contributor

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...

frieze Community Regular

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.

kittty Contributor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • 2 weeks later...
stacytr Newbie

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,209
    • Most Online (within 30 mins)
      7,748

    Ashley P.
    Newest Member
    Ashley P.
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • More2Learn
      Thanks, yes, I've gone back and forth.  There is a lot of autoimmune disease in my family, so primarily I was thinking a real diagnosis might be helpful for other family members -- especially as I have two young biological nephews.  I feel like I am at a crossroads, where if I'm going to test now would be the time, since I've been in a less-than-perfect eating period.  I'm either going to just going to use what I've learned in these last few months to purposely never cheat again (obviously there is the accidental glutening situations) or test first, and then do that.  I don't need an official diagnosis so much that if I'm doing well I'm going to sabotage that by then starting to eat gluten again. I'm so glad you said this.  Even from what I've read so far, it makes sense to me that this is a misconception.  But growing up with all kinds of allergies, I can see how, as for the general population it's just easier for everyone to simplify it down to a type of "allergy," people would assume this.  It's just how most people look at allergies and diets and gluten avoidance has been painted as both.  I even see it in my journey to date, when I say I want a gluten free selection at a restaurant and I am asked "is it an allergy?" and it is so much easier just to say yes (even if the answer is actually well, no, it's autoimmune).  Because the "yes" answer is the "this is serious" answer.
    • kopiq
      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
×
×
  • Create New...