Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Deades

Confused on test results

Rate this topic

Recommended Posts

I did not have a blood test.  Had the scope looking for a stomach ulcer.  One doctor says I have celiac and another says no.  What do you think?

Here are the notes from my endoscopy:

Mild chronic duodenitis with mild to moderate villus blunting compatible with changes related to celiac disease in the appropriate clinical and endoscopic setting.  No dysplasia or malignancy identified.

Stomach Antrim biopsy:. Gastric mucosa with minimal inflammation. No dysplasia or malignancy identified.

Share this post


Link to post
Share on other sites

While it is a shame that your doctor did not order a celiac blood test (are you sure?), he did find villi damage.  This can occur for many reasons but the predominant one is celiac disease.  You were anemic and had osteoporosis at the time of your diagnosis.  It is too soon for to for a bone scan, but how is your anemia?  Improved on a gluten free diet?  That should confirm the diagnosis and set your mind at ease.

If you look at the history of celiac disease, biopsies came first, long before blood tests. 

https://www.cureceliacdisease.org/wp-content/uploads/SU07CeliacCtr.News_.pdf

 

 

Share this post


Link to post
Share on other sites

There was no blood test for celiac because he was looking for a stomach ulcer.  Celiac was not even a thought at the time. I have always been anemic but my red blood cell count was also low.  I am scheduled to see the doctor in midSeptember and will have my first blood test to check on iron levels prior to that visit.

Share this post


Link to post
Share on other sites

I have been anemic my entire life.  It was always blamed on my being a women and Thalassemia (genetic anemia), but I also had iron-deficiency anemia that waxed and waned.  Since I have been gluten-free for four years, my iron-deficiency anemia is long resolved!  I still have Thals, but my body has long adapted.   I am not ever going to win the Senior Olympics, but I can hold my own!  

My ferritin levels did go up with my three month check-up.  Since my hubby had been gluten-free for 12 years prior, I knew the diet well.  If your results are not perfect, give yourself more time.  The learning curve for the gluten-free diet is steep.  

It took much longer for other "hidden" issues to resolve (fractures, neuropathy, food intolerances, etc.).  

Share this post


Link to post
Share on other sites

Ok, I am looking through your old posts now after commenting on your recent one.

Ditto with cycling lady. Shame on them for not ordering the freaking celiac panel. Why would they not order it after the scope to confirm?

Will your insurance at least cover the genetic test? 30% of the population has the gene and only a small percentage develop celiac. However, at least you would know if you had a low or high risk gene. It might make you feel more confident in the diagnosis, especially having a doc tell you he thought the diagnosis of celiac was perhaps not correct.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 20, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Member Statistics

    • Total Members
      86,777
    • Most Online
      4,125

    Newest Member
    Sdceliac
    Joined
  • Forum Statistics

    • Total Topics
      112,053
    • Total Posts
      956,602
  • Who's Online (See full list)

  • Forum Discussions

    So i recently had a baby and 3 months postpartum I started celery juicing and after juicing my stomach would be in so much pain. So I stopped it for a while and a whole month no pain or issues. I made an apt with a GI doctor to just get my blood work checked everything came back great except the Ema it was 1:20 he said it was strange because all the other Celiac panel test were negative my Ttg and the genetic screening even. So I made an apt with another doctor for second opinion she stated
    I am celiac and eat gluten-free, DF, SF and sunflower free because I'm highly reactive to all 4. I discovered about a year and a half ago that I would have severe and immediate GI reactions, similar to as if I ate dairy, to anything with sunflower/safflower products in it, but I think that's when using the oil became more prevalent too. Strange because I loved sunflower seeds as a kid. I've also linked it to places I've eaten out where everything was fine and then discovered they started using s
So i recently had a baby and 3 months postpartum I started celery juicing and after juicing my stomach would be in so much pain. So I stopped it for a while and a whole month no pain or issues. I made an apt with a GI doctor to just get my blood work checked everything came back great except the Ema it was 1:20 he said it was strange because all the other Celiac panel test were negative my Ttg and the genetic screening even. So I made an apt with another doctor for second opinion she stated that
  • Blog Entries

  • ×
    ×
    • Create New...