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 Tests - What To Do Now?

answersaregood

Recommended Posts

answersaregood Newbie
answersaregood
Posted

Hi everyone! I'm new here and have been reading as much as I can, but don't have much time on the computer lately...so I'm sorry if I'm repeating something that someone else has already talked about!

Basically, I'm trying to figure out what to do next. I've been having some really odd symptoms since February and have been to see my PCP, an endo and a neurologist. My blood levels are low, indicating that I'm anemic, I had a Vitamin D level of 5 in March so I was extremely deficient, and my Parathyroid Hormone level was elevated. Other than that, my blood work has come back clear...and I've been tested for nearly everything I know of.

The endo ordered the following tests:

Tissue Transglutaminase AB IgA - My result was "3", with a reference range of <20 units

Gliadin Antibodies IgA - my result "2", ref. range = <20

Gliadin Antibodies IgG - my result "2", ref. range = <20

(<20 = negative, 20 - 30 = weak positive, >30 = moderate to strong positive)

Methylmalonic Acid (B12 test) - my result "0.10", ref. range <0.40 umol/L

Okay, so hopefully someone can help me here. My endo was adamant that I had celiac based upon our initial consult...but when the tests came back, he didn't even bother to call me and I got a note in the mail over 4 weeks later telling me "good news, all the tests were negative". That was it. Since I got the results, I returned to my PCP who mentioned that she knew of a patient who also tested negative, but started receiving B12 injections and went gluten free and is now 100% better...BUT what concerns me is that she mentioned that before ever receiving the actual numbers from my tests. When I look at my blood results, I have a hard time thinking it could still be celiac, since I was WAY on the opposite end of the spectrum...not even a borderline level of anything related to gluten! SO, what I'm trying to figure out is whether the numbers actually mean that much. I have read that some of you have had "negative" blood work too...but were your levels so incredibly LOW? Or were most of you borderline? My PCP has since referred me to a neuro where I am waiting on an EEG, but has told me that if all is clear with the neuro, then she could order a biopsy of my intestine to check the villi. I frankly don't want to have anything shoved down my throat unless I'm pretty confident that I'll find something off...any thoughts?

Thanks so much in advance for any input you can give me! (And I can list symptoms if it would be helpful, but the list is just too long for me to put in here unless you need them to give me advice).

Rhonda

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

Celiac.com Sponsor (A8-M):


nikki-uk Enthusiast
nikki-uk
Posted

If you had a condition called 'IgA deficiency then you simply couldn't produce enough antibodies to get a positive result.

Your doc should have also included a 'Total Serum IgA' in your panel to exclude it.

Anyway, you have three options now.....

Get your doc to take a total serum IgA,

Push for an Endoscopy,

Go gluten-free off your own back

Good luck in what you decide :)

Billygean Apprentice
Billygean
Posted

I had similar results since I have basically unexplained fatigue and dizziness. I've been gluten and dairy free for a few weeks now and I am feeling steadily better :D

I think a) it could be a false negative. Remember it's FALSE so I suppose it doesn't matter that it wasn't a borderline positive kind of negative, if you see how I mean. Sometimes the tests get it all wrong. B) You could be just allergic / in tolerant to wheat, not celiac.

So I would give it a go anyway, see how you feel. If in 12 weeks you feel the same, give it up, but if you feel better, I don't think you really need a diagnosis since by then you'll have figured out what works for you.

I gave up dairy too as some celiacs find this helps but also, if a food intolerance is causing your issues, there's a high chance it's either wheat or dairy. To be on the safe side I'm not eating oats/barley etc just in case it is Celiacs.

BG

CamiJ Newbie
CamiJ
Posted

I had negative blood tests too (numbers lower than yours). I was so sure I had celiac that I pushed for the endoscopy. (I've been symptomatic my whole life - got much worse recently, have family history of celiac - anyway, I really thought I had stumbled onto the answer). Anyway, my biopsy results were negative too, although they did find unexplained villi damage (not celiac). Anyway, I've been looking into other allergens lately, and it seems that many can cause the same types of problems and damage, but they are not as diagnosable as celiac (which is difficult to diagnose in the first place). Anyway, I'm going to try cutting gluten (there seems to be some evidence that you can have problems associated with gluten without having actual celiac disease), dairy, soy, and corn (all major villi damagers), and see what happens. I hope you get well. Will you keep me posted on your progress? You and I are in the same boat at the moment.

answersaregood Newbie
answersaregood
Posted
  • Author
I had negative blood tests too (numbers lower than yours). I was so sure I had celiac that I pushed for the endoscopy. (I've been symptomatic my whole life - got much worse recently, have family history of celiac - anyway, I really thought I had stumbled onto the answer). Anyway, my biopsy results were negative too, although they did find unexplained villi damage (not celiac). Anyway, I've been looking into other allergens lately, and it seems that many can cause the same types of problems and damage, but they are not as diagnosable as celiac (which is difficult to diagnose in the first place). Anyway, I'm going to try cutting gluten (there seems to be some evidence that you can have problems associated with gluten without having actual celiac disease), dairy, soy, and corn (all major villi damagers), and see what happens. I hope you get well. Will you keep me posted on your progress? You and I are in the same boat at the moment.

Thanks, I will keep you posted. We have just ruled out Lupus, Rheumatoid illnesses, and heavy metal toxicity. I have an EEG scheduled for the 28th, since my neuro wants to rule out some sort of seizures...although she did say that she didn't believe that was it. From there, I think she wants to simply try treating the migraines...but we'll see. My symptoms are very similar to a few friends who have MS, so I would like them to look into that as well is everything else comes back clear. I think if things are clear with the neuro, I'll ask my Primary if she will still order the biopsy just to see if there is damage before I change my diet too much (I LOVE food!)...hmmm...maybe I need to add that I am not overweight though, and lead a very healthy lifestyle...but still love food! :) I'll let you know what happens over the next few weeks. Please fill me in if you get any news as well!

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    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

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.