Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Likelihood of positive bloods but negative biopsy?


Eluthx

Recommended Posts

Eluthx Newbie

Hey, 
I’m very new to the coeliac world after going to my GP feeling extremely tired and experiencing brain fog. He ran the normal bloods, which I had no idea included coeliac screening. If I’m honest I was sure I was anaemic or it was down to having a 2 year old, studying full time and having a bit of a shoddy diet 😂😅

Anyways, to my surprise the tests came back as normal except the below (plus low folate levels of 2.9ug/L)

IGA ANTI-TTG ANTIBODY: 29.2 U/mL

Normal range: Below 15.0

Endomysial antibody IgA level - Weakly Positive

I do have a family history as my grandfather and uncle are both coeliac, however my dad has never been tested. Ive had my endoscopy and biopsy last weekend, but wondered the likelihood of having positive bloods but a negative biopsy? I’m trying to explore my options if that is the case. I’m still experiencing these symptoms and it’s starting to have an impact on studying for my MSc

 

Thank you!


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

If I understand your test results correctly, it looks like this one is positive: 

IGA ANTI-TTG ANTIBODY: 29.2 U/mL

If the normal range is below 15.0. You are twice the cut off level for a positive test for celiac disease. Were you eating gluten daily before your blood test? 

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score. 

Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis.

 

 

Eluthx Newbie
On 2/17/2024 at 11:17 PM, Scott Adams said:

If I understand your test results correctly, it looks like this one is positive: 

IGA ANTI-TTG ANTIBODY: 29.2 U/mL

If the normal range is below 15.0. You are twice the cut off level for a positive test for celiac disease. Were you eating gluten daily before your blood test? 

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score. 

Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis.

 

 

Thank you for this.

I got my results today and my biopsies came back normal, so not really sure where I go from here 😂 feeling a bit frustrated if I’m honest as I’d half hoped that I would have an answer for how I’ve been feeling

Scott Adams Grand Master

Your high antibody test still points towards non-celiac gluten sensitivity. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. Some experts believe that it is a precursor to celiac disease.

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,056
    • Most Online (within 30 mins)
      7,748

    Genuine
    Newest Member
    Genuine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Soleihey
    • Wends
       In terms of a low carb diet the thing to remember is that it is not a “no carb” diet. Far from it. There are a lot of misconceptions. Real food is the key. Avoiding refined sugars and starches. In the textbook that doctors use it states that “Carbohydrates” are not essential to life, unlike proteins and fats. Glucose on the other hand is essential, yes, and the liver makes and tightly regulates all it needs in the presence of adequate calories from proteins and fats. It’s biochemistry 101.  My personal view is that the NHS advice is out of date. And no wonder the life expectancy and quality of life of people with diabetes down the road is reduced - not to mention the cost to the NHS when complications arise decades after diagnosis because too much insulin to keep numbers in range is like a bandage to cover up while under the surface the damage is still going on. Retinopathy. Peripheral neuropathy. Sorry, don’t want to doom and gloom. But it’s true. The fuel you choose today dictates tomorrow. The information is out there in the scientific papers. It’s a can of worms but there is decades of scientific literature to back up a natural low carb diet. Professor Tim Noakes of Cape Town university went through a three year trial (and won) after a dietitian accused him because he recommended weaning a child on to meat after breastfeeding. They said they needed carbohydrates. He’s a professor of sports and exercise and medical doctor with diabetes. There’s a whole host of Professors and medical doctors and dietitians and medical professionals around the world advocating for real food and essentially a low carb diet. Humans evolved over millennia on real food. None of the modern high carb ultra processed or modern breads of the last century or so. Check out the Public Health Collaboration UK based charity. There’s conference videos online and free info. I think type 1 diabetes was covered a few years ago. Dr David Cavan UK specialist. Professor Knoakes also came out with a great cookery book called Superfood for Superchildren…from toddlers to teens. It is part of the Real Meal Revolution series of healthy eating. It sounds like youre on this already with breastfeeding and eating healthy so good on you! So sorry about the cards your little one has been dealt but with the right education and diet it is totally manageable and there’s no reason not to have stable blood sugars and have a long and happy life without diabetes complications. Same as children diagnosed with coeliac disease, a healthy naturally gluten free diet is the antidote to the gluten poisoning. Sugar and refined starches are toxic to diabetics. With modern technology of blood glucose monitors it’s easy to figure out suitable foods by how different foods effect the blood glucose level. Sorry, the reference of igA deficiency possibility was to Trent’s reply regarding Total igA and “artificially low” positive test. Not the case as the NHS screen total igA. In terms of poo signs. The Guts UK charity has loads of great info.  
    • knitty kitty
      Hair loss is also a symptom of thiamine insufficiency.     Peripheral neuropathy, another thiamine insufficiency symptom, can cause a feeling of itchiness on the skin without a rash.
    • RMJ
      Celiac testing often includes looking at total IgA levels, because if someone is deficient the IgA tests for celiac disease may not be accurate (false negatives).  Did her doctors say anything about how much gluten she should consume?  If you change that it could affect her next test results.
    • knitty kitty
      @mytype1diabetes, Do keep in mind that Celiac Disease is genetic, so all first degree relatives (parents, siblings) should be checked for celiac disease as well.   Thiamine deficiency is common in breastfeeding mothers and their babies, even in countries where people are well fed and eat healthy.  A high carbohydrate diet requires more thiamine to turn those calories into energy.  Mothers on a high carbohydrate diet can be deficient in thiamine which also causes the infant to be deficient. DKA is found in children with thiamine deficiency.   Thiamine deficiency correction is part of DKA treatment. Thiamine deficiency needs to be addressed and corrected quickly and maintained.  Ask for an Erythrocyte Transketolace test for thiamine deficiency. I've experienced this myself.  Diabetics continue to lose thiamine due to poor renal uptake. Thiamine should be supplemented daily.  Thiamine is a constant in my life which helps immensely with my diabetes.   References: Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Pediatric thiamine deficiency disorders in high‐income countries between 2000 and 2020: a clinical reappraisal https://pmc.ncbi.nlm.nih.gov/articles/PMC9290709/ Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ The Impact of Thiamine Treatment in the Diabetes Mellitus   https://pmc.ncbi.nlm.nih.gov/articles/PMC3376872/#:~:text=Low plasma thiamine level was,increase in thiamine transporter expression. Thiamine as adjunctive therapy for diabetic ketoacidosis (DKAT) trial protocol and statistical analysis plan: a prospective, single-centre, double-blind, randomised, placebo-controlled clinical trial in the USA https://pmc.ncbi.nlm.nih.gov/articles/PMC10910407/#:~:text=Introduction,acidemia in patients with DKA. The relationship between lactate and thiamine levels in patients with diabetic ketoacidosis https://pubmed.ncbi.nlm.nih.gov/23993771/ Acute thiamine deficiency in diabetic ketoacidosis: Diagnosis and management https://pubmed.ncbi.nlm.nih.gov/17006386/ Thiamine status during treatment of diabetic ketoacidosis in children - tertiary care centre experience https://pubmed.ncbi.nlm.nih.gov/36440592/ Low thiamine levels in children with type 1 diabetes and diabetic ketoacidosis: a pilot study https://pubmed.ncbi.nlm.nih.gov/25560422/
×
×
  • Create New...