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

Confused on test results


Deades

Recommended Posts

Deades Contributor

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.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

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. 

Open Original Shared Link

 

 

Deades Contributor

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.

cyclinglady Grand Master

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.).  

  • 3 weeks later...
ironictruth Proficient

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.

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. - Russ H replied to Ginger38's topic in Related Issues & Disorders
      27

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - GFhappygirl commented on Scott Adams's blog entry in Gluten Busters: Gluten-Free Product Alerts by Celiac.com
      6

      Simple Mills and Made Good Foods Products May Contain Gluten Levels Above the FDA's Allowable Limit of 20 ppm

    3. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    4. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    5. - Theresa2407 replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

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

    • Total Members
      133,709
    • Most Online (within 30 mins)
      7,748

    Michelle Tampakis
    Newest Member
    Michelle Tampakis
    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

    • Russ H
      Shingles vaccination also provides some protection against dementia: https://www.nihr.ac.uk/news/major-study-finds-new-shingles-vaccine-could-lower-risk-dementia
    • knitty kitty
      @Heatherisle, You have good reason to worry.   Ask the doctors to do an Erythrocyte Transketolace Activity Assay to test for Thiamine B1 deficiency.  Thiamine deficiency is frequently found in B12 deficiency.  Deficiencies in all the B vitamins are common with malabsorption due to Celiac disease.  Thiamine can run out in as little as three days.   Thiamine deficiency symptoms can be mistaken for other diseases such as MS and Guillian-Barre Syndrome.  Thiamine deficiency symptoms include pain in legs and abdominal pain as well as depression and gastrointestinal symptoms. Thiamine B1, Pyridoxine B6 and Cobalamine B 12 together relieve nerve pain. References and Interesting Reading: Wernicke’s encephalopathy mimicking multiple sclerosis in a young female patient post-bariatric gastric sleeve surgery https://pmc.ncbi.nlm.nih.gov/articles/PMC8462913/ Thiamine Deficiency Masquerading As Guillain-Barré Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11872742/ Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke’s Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pmc.ncbi.nlm.nih.gov/articles/PMC6429982/ Is there a Link between Vitamin B and Multiple Sclerosis? https://pubmed.ncbi.nlm.nih.gov/28875857/ Thiamine Deficiency and Neurological Symptoms in Patients with Hematological Cancer Receiving Chemotherapy: A Retrospective Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC8559079/ The Effects of Vitamin B in Depression https://pubmed.ncbi.nlm.nih.gov/27655070/ Thiamine Deficiency Neuropathy in a Patient with Malnutrition due to Melancholic Depression https://pmc.ncbi.nlm.nih.gov/articles/PMC10942818/ Myopathy in thiamine deficiency: analysis of a case https://pubmed.ncbi.nlm.nih.gov/16920153/ Neurologic complications of thiamine (B1) deficiency following bariatric surgery in adolescents https://pubmed.ncbi.nlm.nih.gov/38705013/ B Vitamins in the nervous system: Current knowledge of the biochemical modes of action and synergies of thiamine, pyridoxine, and cobalamin https://pubmed.ncbi.nlm.nih.gov/31490017/ Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC6459027/ B Vitamin Deficiencies and Associated Neuropathies https://pmc.ncbi.nlm.nih.gov/articles/PMC12855320/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Update on Safety Profiles of Vitamins B1, B6, and B12: A Narrative Review https://pmc.ncbi.nlm.nih.gov/articles/PMC7764703/  
    • Heatherisle
      Hi  There’s been no mention of her adrenal glands as far as I know
    • Theresa2407
      Have they checked her Adrenal glands.    
    • Heatherisle
      Just an update on my daughter. She is still in hospital and getting quite depressed about everything. She had a CT scan of head and chest to rule out stroke in view of her symptoms. Thankfully there is no evidence of that so they now want to do an MRI to rule out MS so this is freaking her out and it’s not doing me much good either!!!They’re also going to do further blood tests to check vitamin levels. My husband and I are trying to reassure her the best we can that hopefully it’s just her body’s reaction to having the Vitamin B medication and it’s affecting her nervous system etc. Think the tingling has subsided but still having some lower back and pelvic pain and some leg pain. Thanks for reading and my apologies if I sound paranoid.
×
×
  • 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.