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

Just getting started here. Need more help!

clutchlee

Recommended Posts

clutchlee Rookie
clutchlee
Posted

Have not had a diagnosis.  But I need help sorting through my symptoms.  Thanks to cyclinglady and GFinDC for your previous responses.

For those on the forum who have a a Celiac Diagnosis, I have questions about your symptoms prior to diagnosis.  Did your symptoms fluctuate on a daily basis or were they pretty constant?  Did just the act of eating and digestion make them worse, even without ingesting gluten?

My symptoms currently include fatigue, insomnia, burning mouth syndrome, blurry vision, some loose stools and some gas.  The blurry vision and burning mouth are brought on by eating/digestion and continue throughout the day worsened by more eating.  Symptoms continue even as I try to eliminate gluten.

Thanks so much for your feedback!

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

I have celiac disease.  From what I have learned through research is that symptoms can wax or wane.  There is no consistency at all.  This applies to me personally.  At the time of my diagnosis, I was just anemic.  I had always been anemic which was attributed to my being a woman and Thalaseemia (genetic anemia), but during an initial consult to the GI for a routine colonoscopy (over 50), he looked at my chart and told me that he thought I had celiac disease.  I was shocked.  I had no intestinal issues.  There was no direct correlation of symptoms when I consumed gluten.  Many people have no symptoms at all!  

Since then I have been glutened twice.  Symptoms have drastically changed.  Now I get intestinal issues.  The first time severe and the second not so severe.  In both cases, I have no idea what caused the glutening, but my current GI did measure my antibodies and they were again elevated.  Those symptoms took three months to resolve.  

The best thing is to ask your MD to give order a celiac blood test, but you have to be eating gluten daily for the tests to work.  Go gluten free?  I would NOT recommend it until you have been tested.  

I wish you well.  

 

clutchlee Rookie
clutchlee
Posted
  • Author

Thank you cycling lady.  Going to MD next week.  Are the Celiac Blood tests and those described in the Univ. of Chicago website (you suggested) for Gluten Intolerance, the same??

Thanks so very much!

cyclinglady Grand Master
cyclinglady
Posted

Yes.  If possible, ask for the complete panel and not just the screening TTG.  Why?  You could be an odd duck like me who tests negative to the TTG.  

Archived

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

Go to topic listing

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

      Pear Bread

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

      Help!!

      I agree with Trents' reply. In addition ... Your post does not say what you did with your child's diet after the blood test and prior to the endoscopy. Usually the Dr advises a "gluten challenge" prior to the test so that the inflammation is more pronounced and easier to see. On the other hand, if they didn't mention this, you may have reasonably restricted...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Doctors
      12

      Second chance

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

      Second chance

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

      Test interpretations

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,683
    • Most Online (within 30 mins)
      7,748
    Alaena
    Newest Member
    Alaena
    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
      Pear Bread

      By Aretaeus Cappadocia · Posted

      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
      Second chance

      By knitty kitty · Posted

      @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
      Second chance

      By Mari · Posted

      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
      Test interpretations

      By trents · Posted

      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
      Test interpretations

      By knitty kitty · Posted

      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.