Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Negative Blood Test


Dozey

Recommended Posts

Dozey Apprentice

Hi all, just saying hello. My doctor says my blood test was negative for Celiac but I am still waiting for the paperwork to see which tests were done. I was low on vit D and my thyroid had dropped too, so that along with the b12 deficiency makes it difficult to know what my symptoms are down to. I am slowly cutting gluten out of my diet. I am feeling slightly better than I have in the past, so maybe my problems have all been due to thyroid and vitamin issues.

Jo


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

You're feeling slightly better from cutting out most of the gluten. Maybe you should do it completely.

 

Just recall that even if the test was negative it does not mean your health problems were all related to vitamin deficiencies. You could still have non-celiac gluten intolerance.

 

The question remains, how did those deficiencies occur?

 

Your B-12 and TSH would have to be pretty tanked for you to have the symptoms you described in previous posts.

Did he say if your were HYPOthyroid?  or HYPERthyroid. (that can cause anxiety and B-12 def)

 

And people can test negative on celiac panels and still be positive on endoscopic biopsies.

 

Typically, low B-12 occurs in people whose digestive systems do not adequately absorb the vitamin from the foods they eat. This can be caused by:

  • Pernicious anemia,
  • Atrophic gastritis, a thinning of the stomach lining that affects up to 30% of people aged 50 and older.
  • Surgery in which part of the stomach and/or small intestine is removed.
  • Conditions affecting the small intestine, such as Crohn's, celiac, bacterial growth, or a parasite.
  • Excessive alcohol consumption.
  • Autoimmune disorders, such as Graves disease or lupus
  • Long-term use of acid-reducing  meds.
Dozey Apprentice

Hi IrishHeart, I am Hypothyroid, and don't absorb b12 as I have parietal cell antibodies. I was originally diagnosed with Pernicious anaemia by the Gastro but this new doc says my blood is ok now! I have muscle wastage, most noticably on my hands but arms and legs too.

Jo

frieze Community Regular

Hi IrishHeart, I am Hypothyroid, and don't absorb b12 as I have parietal cell antibodies. I was originally diagnosed with Pernicious anaemia by the Gastro but this new doc says my blood is ok now! I have muscle wastage, most noticably on my hands but arms and legs too.

Jo

pernicious anemia, Does, Not, go away....you will need supplements for the rest of your life.  You may get enough orally with large doses on an empty stomach, if not, shots will be nec.

IrishHeart Veteran

Sorry, Jo

I was not able to get on the site yesterday to reply, but I see frieze has already provided the same  answer I would have.

:)  thanks, frieze !

Dozey Apprentice

Thanks both. Well that's what I can't understand about the doc saying I don't have PA now. He said tablets are no good to me as I won't absorb them, and I know I have to have injections every three months for life. Or that's what I was told initially. Another doctor said that as my level is now high (after loading doses and two top ups) she would be looking at stopping them! That's why I changed docs. My level was only 83 when I was first diagnosed in November and it took two and a half months for the old surgery to tell me that. I am just waiting for my blood paper work to come so I can see what my level is now.

Jo

frieze Community Regular

Thanks both. Well that's what I can't understand about the doc saying I don't have PA now. He said tablets are no good to me as I won't absorb them, and I know I have to have injections every three months for life. Or that's what I was told initially. Another doctor said that as my level is now high (after loading doses and two top ups) she would be looking at stopping them! That's why I changed docs. My level was only 83 when I was first diagnosed in November and it took two and a half months for the old surgery to tell me that. I am just waiting for my blood paper work to come so I can see what my level is now.

Jo

arghhhh.....this is a life long condition!  will not go away, some docs...... as I said large doses, on an empty stomach....methyl-. if you can get it, instead of the cyano-.good luck.

(welcome, Irish; lol)


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



Celiac.com Sponsor (A8-M):



Dozey Apprentice

arghhhh.....this is a life long condition!  will not go away, some docs...... as I said large doses, on an empty stomach....methyl-. if you can get it, instead of the cyano-.good luck.

(welcome, Irish; lol)

Thanks Frieze, I appreciate your advice.

Jo

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Laura Q's topic in Related Issues & Disorders
      7

      Newly diagnosed

    2. - plumbago replied to Laura Q's topic in Related Issues & Disorders
      7

      Newly diagnosed

    3. - Bronwyn W replied to Laura Q's topic in Related Issues & Disorders
      7

      Newly diagnosed

    4. - Scott Adams replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      20

      Still unsure.....

    5. - knitty kitty replied to maylynn's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      4 Years and very little progress


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,819
    • Most Online (within 30 mins)
      7,748

    CancerFreeSince2025
    Newest Member
    CancerFreeSince2025
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      As Plumbago mentioned, bleeding in the upper end of the GI track tends not to show up as bright red in color because it gets acted upon by the digestion process and more thoroughly mixed in with food residues that are passing through the intestines.
    • plumbago
      @Bronwyn W Working with your medical provider, you could do a complete blood count test. If you were bleeding say from an ulcer in the stomach (and let's hope not), your red blood cells could be low and your hemoglobin low as well. Your stools may show up as the proverbial "dark and tarry," indicative of a bleeding site further away from the anus. Basically, you may be anemic. Your heart may be beating extra fast as a way to compensate for the decreased number of blood cells, your oxygen saturation may be lower than normal on a pulse oximeter, and so on. But talk to your doctor.
    • Bronwyn W
      Thank you for this insight. I have had rectal bleeding after glutening and subsequent constipation (+ IBS-C) and always attributed it to internal hemorrhoids (diagnosed). What I wasn't aware of is the possibility of bleeding further up the digestive tract. Please can you elaborate on the causes and symptoms to watch for?
    • Scott Adams
      Be sure to be eating gluten daily until all of your celiac disease tests are completed (at least 2 slices worth of wheat bread per day for at least 6-8 weeks before any blood tests, and 2 weeks before an endoscopy).
    • knitty kitty
      @maylynn, No, I took over the counter thiamine supplements, thiamine hydrochloride, Benfotiamine, and TTFD (tetrahydrofurfuryl disulfide).  My doctors were not very knowledgeable about nutrition and vitamins, and they missed my symptoms being connected to vitamin deficiencies.  I studied nutrition before earning a degree in Microbiology because I wanted to know what vitamins were doing inside the body.  My doctors just prescribed pharmaceuticals to cover the symptoms of poor health due to malabsorption of nutrients. We need more thiamine when we're physically ill, physically active, emotionally stressed and work outside in hot weather.  Thiamine works in concert with the other B vitamins, so all should be supplemented together.  Vitamin D needs to be activated by thiamine.  Vitamin D helps regulate the immune system.   Don't take Thiamine Mononitrate because it is not bioavailable.  The body has difficulty absorbing and utilizing it.   Do keep us posted on your progress!
×
×
  • Create New...