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 But Many Symptoms


Kat123

Recommended Posts

Kat123 Newbie

I have just got my blood test back for celiac and they were negative. My brother has celiac disease and my father had ulcerative colitis and my sister has rheumatoid arthritis. I have many symptoms; diarrhea everyday for months, headaches (sometimes migraines sometimes just dull headache), brain fog, overwhelming tiredness, joint pain especially in toes and fingers, ringing in the ears. I was diagnosed with Hashimoto's 20 years ago and have been taking levothyroxine ever since. I was also diagnosed with a b12 deficiency 10 years ago, sometimes I have shots, I take sublingual everyday.

 

As I said the celiac blood tests were negative but they did show a vitamin d deficiency, low sodium, low white blood count, and slightly low b12 despite supplements. They didn't test for any other vitamins, only d and b12. Thyroid numbers were all ok (I take 150mcg levothyroxine everyday) except T3 uptake which was low. They also repeated the thyroid antibody test which also came back negative. This is very surprising as 20 years ago they were very highly positive. I am wondering if because my immune system is depressed (i.e. low wbc) could this produce a false negative in the antibody test because you are not producing enough of any antibodies? Also I was eating gluten but only a slice or two of bread a day, is this enough?

 

Thanks so much for any input! 


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Get a copy of the blood tests and see what they actually tested. Sometimes, they don't do the correct tests. So I would check all that first. Were you gluten free for any time period?

Kat123 Newbie

Get a copy of the blood tests and see what they actually tested. Sometimes, they don't do the correct tests. So I would check all that first. Were you gluten free for any time period?

I was gluten free for only a few days when tests were done. I feel terrible in the first 2 weeks of being gluten free, by the way. Bloated and awful heartburn!

GFinDC Veteran

Hi,

 

Well, regardless of medical testing, you know your body is reacting to gluten in some way.  People without a gluten intolerance shouldn't have any symptom changes on going gluten-free.

Archived

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

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

    • Total Members
      134,078
    • Most Online (within 30 mins)
      10,442

    Hmom
    Newest Member
    Hmom
    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
      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
      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
      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
      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
      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...