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

Blood Test Results

ginnym

Recommended Posts

ginnym Newbie
ginnym
Posted

I've been told my tests for coeliac are negative even though a gluten free diet has totally eradicated my symptoms. To be honest, that's enough for me and I'll carry on with the diet but I'm still curious about the tests. When I had the blood taken, I'd eated almost nothing for 3 weeks which may have affected the results. This is what they say:

Endomysial IgA - negative

IgA 1.51 (NR 0.64-2.97)

IgG 10.80 (NR 5.80-15.40)

IgM 1.80 (NR 0.71-2.30)

Anti IgA transglutaminase - negative <10 U/ml

I seem to be right in the middle of most of the normal ranges which seems to confirm the doc's view that I'm negative for coeliac. Can anyone tell me if those are all the tests I should have had done or are there any others (I'm UK based)?

Thanks

Ginny

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted

If you started the diet prior to testing the results are not reliable.

ginnym Newbie
ginnym
Posted
  • Author

I hadn't started a gluten-free diet, I was just eating practically nothing because I was so unwell. The docs keep telling me there's no such thing as a false negative which I know isn't true, but I wasn't even sure if they'd done all the right tests anyway. My biopsy was inconclusive too so I guess I must be one of those with a non-coeliac gluten intolerance.

tipnpat Newbie
tipnpat
Posted
I guess I must be one of those with a non-coeliac gluten intolerance.

I used to believe there was a difference but now I think gluten intolerance is just early detection and a name for inconclusive tests that have proven to be unreliable. There are many instances of negative blood work but positive biopsies and vice versa with the biospsy or blood work becoming positive in a year or two. If you feel bad when you eat gluten then your body is reacting to it. Why is it that doctors want you to wait until your body has permanent damage to make a diagnosis. The key is prevention. I wish the medical community could wake up and think outside the box!

As far as testing goes, the endomysial antibody test is supposed to be the most "specific." That's the test the pediatric GI left out of my children's panel and now I'm not reassured by their results. Do you have celiac in your family?

ginnym Newbie
ginnym
Posted
  • Author
I used to believe there was a difference but now I think gluten intolerance is just early detection and a name for inconclusive tests that have proven to be unreliable. There are many instances of negative blood work but positive biopsies and vice versa with the biospsy or blood work becoming positive in a year or two. If you feel bad when you eat gluten then your body is reacting to it. Why is it that doctors want you to wait until your body has permanent damage to make a diagnosis. The key is prevention. I wish the medical community could wake up and think outside the box!

As far as testing goes, the endomysial antibody test is supposed to be the most "specific." That's the test the pediatric GI left out of my children's panel and now I'm not reassured by their results. Do you have celiac in your family?

I don't know of anyone with a diagnosis of coeliac in the family but my late mother always had gastric "issues" and one of my nieces also has lots of problems. I know that gluten free works for me but one of the reasons for wanting a definite diagnosis is so that I can advise the rest of family about testing for coeliac. I know I can always do that anyway and my niece may well have a GP who will test if my brother asks but it would carry more weight if he could say with certainty that there was a family member with coeliac.

tipnpat Newbie
tipnpat
Posted
I know that gluten free works for me but one of the reasons for wanting a definite diagnosis is so that I can advise the rest of family about testing for coeliac.

I feel the same way. It just seems so important to me but everyone in my family, including my husband look at me with tried patience. In the beginning I said to myself that being on a gluten-free diet was a lifestyle choice for me and a diagnosis would not change anything. But, it DOES change whether or not anyone believes you or thinks you've just gone off your rocker. I can totally see your point.

Tip

salomeh7 Newbie
salomeh7
Posted
Can anyone tell me if those are all the tests I should have had done or are there any others (I'm UK based)?

Ginny,

Reading through the post it seems your question did not get answered. The only thing I see missing is a Total IgA. This is also called a quantitative IgA. If you are IgA deficient then the other IgA dependent tests such as ttG and EMA would not be accurate.

Salomeh

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

Celiac.com Sponsor (A8-M):


ginnym Newbie
ginnym
Posted
  • Author
Ginny,

Reading through the post it seems your question did not get answered. The only thing I see missing is a Total IgA. This is also called a quantitative IgA. If you are IgA deficient then the other IgA dependent tests such as ttG and EMA would not be accurate.

Salomeh

Thanks for your response Salomeh. I'll ask the docs about it next time I see them.

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. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      This article does not address migraines at all. Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines...
    2. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    4. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    5. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,156
    • Most Online (within 30 mins)
      7,748
    Shrub
    Newest Member
    Shrub
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.