Jump to content
  • 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

Question About First Visit With Doctor


Menqet

Recommended Posts

Menqet Newbie

Hi everyone!

I am going to my doctor on Monday to see if I can get tested for celiac (and to have my hearing tested, too). I've been gluten-free for several days, and I feel great now! My husband thinks I'm nuts. My question right now is, should I start eating gluten again before my doctor's appointment? I'm not sure when/if he'll test me. The thought of going back to gluten freaks me out. I'm 36, married and have two amazing daughters. I see some symptoms in my youngest, which has prompted me to find answers.

Here's some of my history:

-symptoms from the past 4-5 years includes: psoriasis on both my index fingers, occasional diarrhea and stomach pain/cramping (not at all consistent, though), horrible memory, lack of concentration, depression, extreme fatigue, hair loss, migraines, weight gain (because I feel like I need to be eating constantly!) - all which is starting to go away with eating gluten-free

-some family history includes: brother that was diagnosed with schizophrenia (so horrible, it was the worst), aunt that was diagnosed with osteoporosis in her early 50's, diabetes. As for myself, I always had anemia (grandma used to dose me up pretty good with her Geritol!), discolored adult teeth, horrible growing pains.

I just don't know when to go back on gluten for testing. Should I wait to talk to him first?


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Hi and welcome!!!

If you have been gluten free for "several days", it should not mess up your result as long as it's done in a timely manner. Yes, the optimum for testing would be a full diet of gluten.

I would request a full Celiac Panel ( I will include that at the end of this post). As well, request a full Metabolic Panel, to check on any deficiencies you may have.

Some PCP do not have the knowledge to interpret the result of the tests they order, so please request the result, so you have it.

*

Serologic Tests

1. EMA (Immunoglobulin A anti-endomysium antibodies)

2. AGA (IgA anti-gliadin antibodies) Some people do not produce IgA antibodies.

3. DGP (Deamidated gliadin peptide antibody)

4. tTGA (IgA anti-tissue transglutaminase)

Menqet Newbie

Thanks so much! I will definitely take that list with me to the visit.

I only started researching celiac this past week, so all of this is very new to me. If that's really what I have, then it certainly explains so much about my life. We'll just have to see what the test results say. Right now, everyone just thinks I'm crazy, and that I was just too bored being snowed in my house for a couple weeks. I really think that things came to a head during the snow storms, because everything we had to eat in the house had so much gluten in it. I felt so horrible! I normally naturally eat gluten free, anyway, so that hasn't been too much of a change for me. A cousin of my husband went through celiac testing, and she helped convince me to get tested.

Again, thanks for the list. I'm very excited that I found this forum!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748

    bigwave
    Newest Member
    bigwave
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.