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

Negative Blood Test

Dozey

Recommended Posts

Dozey Apprentice
Dozey
Posted

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
IrishHeart
Posted

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
Dozey
Posted
  • Author

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
frieze
Posted

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
IrishHeart
Posted

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
Dozey
Posted
  • Author

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
frieze
Posted

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
Dozey
Posted
  • Author

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,034
    • Most Online (within 30 mins)
      7,748
    CE1963
    Newest Member
    CE1963
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Scott Adams · Posted

      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      Fighting for a name

      By Scott Adams · Posted

      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Celiac getting dentures

      By NanCel · Posted

      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.