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

Did I Do My Antibody Test Wrong?

misha

Recommended Posts

misha Newbie
misha
Posted

Hi everyone. My sister has celiac disease. I suspected I had it too so I went on a gluten free diet for about a year. Then I decided to have the antibody blood tests, so for about three weeks I ate a couple of pieces of spelt and rye bread a day, then I had the tests. They came back negative for celiac disease.

Thinking I didn't have the disease, I've been eating lots of bread of all kinds since then, but feeling worse and worse -- having anemia, as my new blood tests show, other blood test abnormalities (high ESR), and very fatigued. I just stopped eating gluten last week and now I feel a thousand times better.

Do you think it's possible that I didn't eat enough gluten to build up my antibodies when I took my test? I feel really dumb about it now. Or would that have been enough gluten to make antibodies show? I'd really appreciate any advice. I feel embarrassed to talk to my doctor about it, because he already acted like I was a total pain when I asked for the tests.

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

Celiac.com Sponsor (A8-M):


SueC Explorer
SueC
Posted

You may not have been eating gluten long enough for damage to show on bloodwork. After being gluten-free it is recomended to go back to eating gluten for 3 months before being tested. You might want to try again in a couple of months! :(

Rachel--24 Collaborator
Rachel--24
Posted

Definately not long enough for accurrate test results. If you feel bad eating gluten and then feel good off of it I'd say you already have your answer but if you need testing to be convinced...then I'd say at least 3 months eating plenty of gluten everyday.

misha Newbie
misha
Posted
  • Author

Thanks to both of you for your reply! I noticed that you had grave's disease, Rachel -- I've had hyperthyroidism too.

Definately not long enough for accurrate test results. If you feel bad eating gluten and then feel good off of it I'd say you already have your answer but if you need testing to be convinced...then I'd say at least 3 months eating plenty of gluten everyday.
  • 2 weeks later...
munchkinette Collaborator
munchkinette
Posted

I was wondering about this too- I tried the gluten-free diet for two weeks, and my doctor said I need to eat wheat for one week before getting my antibody tests. (next week)

Will one week be enough since I only ate gluten-free for a short time?

Rachel--24 Collaborator
Rachel--24
Posted

Are you getting bad symptoms when you eat gluten? If it were me and I *wasnt* in too much discomfort...I'd eat it for alot longer than one week to get the most accurate test results. I was off gluten for 2 weeks before testing and the tests were negative. Once I was gluten-free for awhile I was never able to go back on it to retest because my symptoms were too severe.

Nancym Enthusiast
Nancym
Posted

Dr. Fine says the intestines can heal up pretty well even as soon as two days of going gluten free and it can take years to get them messed up again to the point of detecting the disease through blood tests or biopsy. And you really do have to be pretty sick to get a positive on the biopsy. I really think the current standard lab tests are very bad at detecting gluten sensitivity unless you're at the extreme end of illness.

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

Celiac.com Sponsor (A8-M):


munchkinette Collaborator
munchkinette
Posted
Are you getting bad symptoms when you eat gluten? If it were me and I *wasnt* in too much discomfort...I'd eat it for alot longer than one week to get the most accurate test results. I was off gluten for 2 weeks before testing and the tests were negative. Once I was gluten-free for awhile I was never able to go back on it to retest because my symptoms were too severe.

I've been eating gluten again for 2 days and I do feel kinda gross. I jumped in because I had the same question and just like micha I have been anemic and really tired. I also had a really tiring weekend with lots of exercise (snowboarding) and drinking, so I can't pick out what is from gluten.

I'm still too new to this to understand what it's all about. My two weeks without gluten was an experiment because of my recent anemia tests. I don't actually know which symptoms are from gluten but I really think the tiredness is related since I noticed a big difference after eating gluten-free for about 4 days. It's not that I need really official test results. I'm just too new to this to determine based on how I feel, so I'd like to get an accurate test.

lemonade Enthusiast
lemonade
Posted
Definately not long enough for accurrate test results. If you feel bad eating gluten and then feel good off of it I'd say you already have your answer but if you need testing to be convinced...then I'd say at least 3 months eating plenty of gluten everyday.

Rachel,

how much would you say is "plenty"?

I have never really liked bread, so before going gluten-free, i didnt eat much breads, my only grain came from oats, which are said to be lower in gluten, if not gluten free, depending on cross contamination, but im thinking that oats still cotnained enouhg gluten to send me over the edge and create the symptoms i have. Is it possible that I hadnt been eating enough gluten for the test results to be accurate?

Lemonade

Are you getting bad symptoms when you eat gluten? If it were me and I *wasnt* in too much discomfort...I'd eat it for alot longer than one week to get the most accurate test results. I was off gluten for 2 weeks before testing and the tests were negative. Once I was gluten-free for awhile I was never able to go back on it to retest because my symptoms were too severe.

Rachel...

How were you diagnosed with celiac disease?

Lemonade

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.