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

Anything Else I Should Be Doing?


BlueFenris

Recommended Posts

BlueFenris Newbie

So I came across celiac disease completely by accident because I saw something about it and was curious so I looked up more info. As I was looking at stuff, I realized that the symptoms sounded a bit too familiar for comfort. I've struggled with anxiety, depression, bloating, constipation, and migraines for a long time. I also definitely have brain fog, I've had very low vitamin D test results, I've always been super pale, always tired, been very irritable, had major mood swings, insomnia, prone to canker sores, etc. The migraines became such a problem that last year I barely managed to pass my senior year of high school because I was having nearly daily migraines. We finally found a treatment that worked for a while but now the migraines are become more frequent again, and when I don't have a migraine I seem to have at least somewhat of a regular headache, and recently my stomach has been aching quite often too. So after seeing that all of these can be symptoms of celiac disease, I scheduled an appointment for Friday to talk to my doctor and have the blood tests done. I've got a list of my symptoms written down and am still on a gluten diet. Is there anything else I should do to prepare or does anyone have any pointers for me? On the one hand I hope it's not celiac, but on the other hand, if it is, a change in my diet could potentially change my life and take care of so many issues I didn't think were related to each other. 


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi,

If you are near a large city, you could look up a celiac support group now.  Contact them and ask if they know any good celiac aware doctors.  Many doctors don't seem to be aware of proper tasting processes.  If you do find a local celiac support group they may be able to help in other ways too.

Otherwise, it sounds like you are doing the right things so far.

BlueFenris Newbie

I do know there's a support group about an hour's drive from where I am. I'll get in contact with them! Thank you!

cyclinglady Grand Master

I would add that you request a full celiac panel (EMA, TTG and DGP).  Why?  Because the typical screening TTG test is very good, but it does not catch all celiacs (like me).  Here's the list of blood tests:

Open Original Shared Link

BlueFenris Newbie
1 hour ago, cyclinglady said:

I would add that you request a full celiac panel (EMA, TTG and DGP).  Why?  Because the typical screening TTG test is very good, but it does not catch all celiacs (like me).  Here's the list of blood tests:

Open Original Shared Link

Okay, I will be sure to request that! Thank you for the input!

BlueFenris Newbie

Update! Had my appointment today and the doctor said she was going to order a full celiac panel without me even having to request it! I was overall impressed with how well my doctor handled this and listened to my concerns rather than writing them off like some people's doctors have.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Aretaeus Cappadocia posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      Pear Bread

    2. - Aretaeus Cappadocia commented on Amiah's blog entry in Amiah
      2

      Help!!

    3. - knitty kitty replied to Jmartes71's topic in Doctors
      12

      Second chance

    4. - Mari replied to Jmartes71's topic in Doctors
      12

      Second chance

    5. - trents replied to anya22's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Test interpretations

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,678
    • Most Online (within 30 mins)
      7,748

    mypenguin500
    Newest Member
    mypenguin500
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      I adapted this to be a gluten-free recipe from www.tasteofhome.com/recipes/autumn-pear-bread. Wonderful flavor profile, great texture, fairly easy to make. The almond flavor from the almond flour complements the pear flavor. Ingredients 1 cup almond flour 1 cup sweet rice flour 1 cup millet flour 2 Tablespoons tapioca flour 1 cup sugar 1 ½ teaspoon baking powder 1 teaspoon baking soda 3/4 teaspoon salt 1/4 teaspoon ground nutmeg 6 tablespoons cold butter 3 large eggs, room temperature 3/8 cup buttermilk (1 tsp white vinegar + 3/8 cup milk) 2 teaspoon vanilla extract 1 ½ cup finely chopped ripe pears (1-2 med/large pears. You could peel them but I don't) Directions (optional) cut butter into pats, place on saucer in the refrigerator while prepping other ingredients In large bowl, combine flour, sugar, baking powder, baking soda, salt and nutmeg. (I use a whisk to mix) Cut in butter until mixture resembles coarse crumbs. (I use pastry blender) Combine eggs, buttermilk and vanilla (I use same whisk); stir into flour mixture just until moistened. (I use a mixing spoon) Fold in pears. (mixing spoon) Spoon into 2 greased 5 x 8 inch loaf pans Bake at 350° for 35-40 minutes or until toothpick inserted in center comes out clean. Cool for 10 minutes before removing from pans on to wire rack. Allow to cool completely. Not sure how long you can keep this at room temperature because it gets eaten quickly
    • knitty kitty
      @Jmartes71, I understand how frustrated you feel.  I have been disappointed with the medical system myself.  Have you read my story in my blog?   What can we do to help you get better?   Nutritional deficiencies are common in Celiac disease.  Have you been checked for vitamin and mineral deficiencies?   Which supplements are you taking?
    • Mari
      hi jmartes This is a link you can click on to see a form to fill out to obtain medical records from Kaiser. If you have already submitted this form  you could send in another one. . The form asks for your MR# and please remember to put in the name you were using before you were married.      How to Request Copies of Medical Record from Kaiser Permanente Form - Fill Out and Sign Printable PDF Template | airSlate SignNow
    • trents
      It would seem then that your next step should be a biopsy to check for damage to the villous lining of the small bowel. But you must not reduce gluten intake until that is performed else healing will take place in that area of the intestines and the biopsy results would be invalidated. 
    • knitty kitty
      Welcome, @anya22, Can you tell us more about your diet?   How much gluten containing foods did you eat?  What kinds of gluten containing foods did you eat?  What has your high calorie diet consisted of?   Some gluten containing foods contain less gluten than others.  Cakes and cookies may have less gluten than something like deep dish pizza.   Glad you're here!
×
×
  • 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.