Jump to content

  • 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):

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
      134,082
    • Most Online (within 30 mins)
      10,442
    Joe B
    Newest Member
    Joe B
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...