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

Cannot Get Diagnosis From Blood Test Alone?

WinterSong

Recommended Posts

WinterSong Community Regular
WinterSong
Posted

I was just listening to a podcast that said there is new research to say that you cannot get diagnosed with Celiac from a blood test alone. I know an endoscopy is the golden standard test, but I've always understood that there are rarely false positive where blood tests are concerned. Has anyone heard of this thought on blood tests? The person on the podcast said that you need to get four or five things done. I'd assume two are the endoscopy and gene test, but I have no idea what else she was talking about.

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

This is especially true for  someone with a slightly positive blood test.  In small children, they will sometimes forgo the endoscopy if there is a god response to the gluten-free diet, a really high ttg (over 100), and genes.  In adults, they still want to do the endoscopy.  Part if the reason for this is to make sure there aren't other issues like ulcers.

nvsmom Community Regular
nvsmom
Posted

I have found it depends on the doctor as well.  I had a high tTG IgA and a positive EMA test; those two are pretty specific for celiac disease so we stopped with that and skipped the endoscopy. I'm diagnosed as a celiac anyways.

 

Up here, doctors will only run the tTG IgA test. My kids were negative on that but had a great response to the gluten-free diet (well, 2/3 did). Without a positive tTG IgA, doctors will not do an endoscopy (I'm not an endoscopy fan anyways) so they will not have a diagnosis (can't retest if they are gluten-free). I tell them to consider themselves to be celiacs.

 

I don't believe they do any genetic testing up here either - could be wrong on that.

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

the link below lists the info I think you're looking for right above the Dermatitis Herpetiformis section.  I copied and pasted it below.

 

Open Original Shared Link

 

The wide variability of celiac disease-related findings suggests that it is difficult to conceptualize the diagnostic process into rigid algorithms that can cover the clinical complexity of this disease. For this reason, a quantitative approach that can be defined as the 'four out of five rule' was proposed recently[Open Original Shared Link]. Using this method, the diagnosis of celiac disease is confirmed if at least four of the following five criteria are fulfilled:

 

1. Typical symptoms of celiac disease

2. Positivity of serum celiac disease IgA class autoantibodies at high titer

3. HLA-DQ2 and/or HLA-DQ8 genotypes

4. Celiac enteropathy found on small bowel biopsy

5. Response to a GFD

WinterSong Community Regular
WinterSong
Posted
  • Author

That's interesting. I had never hear of the 4 out of 5 method. I always thought it was just the blood test and endoscopy. I had a tTg that was off the charts, an endoscopy with blunted villi, symptoms of Celiac, and a positive response to the diet. My doctor had wanted to do a gene test, but I didn't feel the need to since he told me I already had the diagnosis. The paranoid part of me thinks that I should have gotten it done, lol. But I'm confident in my diagnosis.

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

If you still want the gene test, it is the one test that results are valid regardless of gluten consumption because your genes do not change  :)

 

 

That's interesting. I had never hear of the 4 out of 5 method. I always thought it was just the blood test and endoscopy. I had a tTg that was off the charts, an endoscopy with blunted villi, symptoms of Celiac, and a positive response to the diet. My doctor had wanted to do a gene test, but I didn't feel the need to since he told me I already had the diagnosis. The paranoid part of me thinks that I should have gotten it done, lol. But I'm confident in my diagnosis.

WinterSong Community Regular
WinterSong
Posted
  • Author

Ok, humor me with this one (with my personality I'm prone to anxiety and I've been dealing with a lot of stressful events lately).

I'll probably go in for the gene test at some point, but it's silly of me to be worrying about my diagnosis now, right? I mean, I had four out of the five...

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Ok, humor me with this one (with my personality I'm prone to anxiety and I've been dealing with a lot of stressful events lately).

I'll probably go in for the gene test at some point, but it's silly of me to be worrying about my diagnosis now, right? I mean, I had four out of the five...

You were diagnosed correctly.

Most folks only have a gene test IF the other criteria are not clear OR they are looking for answers for their family. You clearly have the most important diagnostic criteria.

No question here...you have Celiac Disease.

Carry on :)

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

You've got the 4/5, so I wouldn't bother  :)

 

Personally for myself, I would like to get the gene test at some point because I have

 

1. Typical symptoms of celiac disease *check

2. Positivity of serum celiac disease IgA class autoantibodies at high titer *I had IgG class only, but DGP IgG which is 99% specific to celiac.

3. HLA-DQ2 and/or HLA-DQ8 genotypes *hasn't been tested

4. Celiac enteropathy found on small bowel biopsy *no damage found

5. Response to a GFD *check

 

The GI I went to wouldn't order a gene test for me because I'd already gotten a positive DGP IgG score.  He said the gene test is not diagnostic alone, which is true, but I still wish he would have ordered it.  Eventually I'll pay out of pocket to get it tested, but that time isn't right now.  I need that money to pay for my food  :lol:

 

Ok, humor me with this one (with my personality I'm prone to anxiety and I've been dealing with a lot of stressful events lately).

I'll probably go in for the gene test at some point, but it's silly of me to be worrying about my diagnosis now, right? I mean, I had four out of the five...

WinterSong Community Regular
WinterSong
Posted
  • Author

Haha, thanks guys. I figured I have a solid diagnosis, which is why I didn't order the gene test in the first place. At the time, I actually thought that my doctor was getting a little test happy, and I don't like it when doctors run tests for no reason.

africanqueen99 Contributor
africanqueen99
Posted

It must be doctor specific, right? 

 

My one year old was DX on blood work alone.  Granted, her numbers were off the chart.  We even redid blood because they were so alarmingly high for such a young person.

 

Then my seven year old was DX based on blood, having a 1st degree relative and lack of growth in a year.  We did the scope, but she had her DX first.

 

I'd like to get the gene test on all of us.  Who knows if I'll get around to it, though?  I wonder if insurance will even pay for it if we've already done the DX process...

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
      133,332
    • Most Online (within 30 mins)
      7,748
    Nicolah
    Newest Member
    Nicolah
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • 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.