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

Advice Please - False Positive Blood Tests?

sweethome

Recommended Posts

sweethome Newbie
sweethome
Posted

Hello,

 

I'd love a little advice/information from people who probably know more about this than I do. Sorry for the slightly long post...

 

I am 32 and female. The only real health problem I have had is endometriosis, which was diagnosed and treated in 2002 and I have had no real problems with since. I am generally very healthy.

 

Last year, in May 2014, in began having some abdominal tenderness just above my belly button if the area was pressed (usually by my toddler's rather enthusiastic hugs!) and left-sided discomfort (waist level) at my back sort of radiating round to the side. I also felt quite full after eating only a little. My GP ordered an ultrasound, which was normal, and a whole range of blood tests, also all normal.

 

Things continued and in September, my GP ordered a coeliac screen which came back positive. My tTGA was 15.3 (normal range 0-6.9) and endomysial antibodies were positive. At the end of November I had an endoscopy and biopsy (4 samples were taken), which came back negative for coeliac disease.

 

In December I started experiencing problems with upper abdominal bloating and also constipation (sorry if tmi, but I could actually go four or five times a day, but just a couple of very tiny little pellets). I also began feeling lightheaded after eating and, with the exception of feeling hungry, felt so much better if I didn't eat or drink at all. So my GP repeated the coeliac screen to see if the first test was an anomaly. This time my tTGA was 35.7 (normal range 0-6.9) and endomysial antibodies were positive.

 

My gastroenterologist (who discharged me back to my GP after the normal biopsy) said I categorically do not have coeliac disease because of the negative biopsy and to continue as normal (with no guidance as to what was causing or would help my current symptoms). My GP agrees that I don't have coeliac disease.

 

So, my question: is there anything else that can cause a positive result on a tTGA blood test other than coeliac disease? My GP and the gastroenterologist both said false positives can occur.

 

My GP suggested I trial a gluten-free diet, but I'm concerned this is a very strict diet and unneccesary if I don't have coeliac disease and will delay/prevent an accurate diagnosis if I do. I have a two year old son, so if I do have coeliac diease, I understand he should be tested?

 

I don't know where to go with this now. Prior to all this starting last year, I had never even heard of coeliac disease. I also don't know if these blood tests are clouding the issue of what is actually causing my symptoms if they really are just false positives...

 

I would really appreciate any advice or insight... Many thanks in advance!

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Your Celiac blood antibodies are going up.  Sounds like you have Celiac.  The GI just missed the damage when he biospied.

 

Open Original Shared Link

 

"if I have a positive blood test and a negative biopsy does that mean I have non-celiac gluten sensitivity?

This is not necessarily true. It may be that the biopsy was done or read incorrectly or that there’s not yet enough damage in the small intestine to diagnose celiac disease (which is often defined as being a “potential celiac”). Please continue to work with a medical professional to eliminate celiac disease before pursuing another diagnosis."

 

 

 

Open Original Shared Link

 

 

"Yes, blood work can be falsely positive, as can any test in medicine, especially at low titers. However, it may be that the biopsy was done or read incorrectly or that there’s not yet enough damage in the small intestine to diagnose celiac disease. A second opinion at a celiac center can help clarify a diagnosis.

False positives vary between the tests and also between the populations considered. For instance, tTG is falsely positive in about 2-3% of people in general, but in about 20% of those with Type 1 Diabetes or other autoimmune conditions. EMA, on the other hand, has basicallyno false positives.

You could consider a Open Original Shared Link and Open Original Shared Link to assist with your diagnosis. In certain cases these can provide a strong enough indication to diagnose the disease when in conjunction with a positive response to a gluten-free diet."

 

Search
MycasMommy Enthusiast
MycasMommy
Posted

If you do decide to do a trial run off of gluten, it will take a few months, at least, to get it all 100% perfect. You may notice relief right away though. Your small intestine is HUGE and the damage may have just been undetected.  That your GP and GI do not KNOW this is a warning sign that they do not know very much about celiac considering your blood work went UP and was twice positive, but they are still blaming the blood work for being inaccurate.  Anyway, if it were me, I would either find a new GI or as I am doing for my kid, going to a "fancy" doctor who deals with it as a specialization. Its out of pocket and worth it. People see having to go gluten free as some sort of horrible death sentence. It really isnt.  It is a change. If it makes you feel better, it is also worth it.  Also, it can cause fertility problems. If you already have endometriosis and are looking forward to another child someday, you will want to get it under control now.  You need no ones permission to go gluten free but it really is better to have a proper diagnoses BEFORE you do.

sunny2012 Rookie
sunny2012
Posted

The blood test was supposed to eliminate the need for biopsy except in very rare cases. I was on the research to find an faster, more accurate, and less invasive method to diagnose Celiac. The biopsy can easily miss this disease for many reasons including biopsying places with no damage and taking biopsies incorrectly. 

I am not sure where the disconnect is with training physicians to understand the dangers of missing a Celiac diagnosis save perhaps they still believe it is no big deal just because it is controlled thru diet and they figure that is no big deal.

 

It is a struggle to function on a gluten free diet. I had to stop eating out with friends who choose to consume the pre-meal bread while talking. I have found recognizable pieces of bread in my drink. NO telling how much of it ends up in my plate.

 

If you shop around the outside of the grocery store and cook from scratch, it will be much easier.

Cthompson638 Newbie
Cthompson638
Posted

I'm in a similar situation. My TTGA levels were low positive in my blood test but the GI has said that if there is no damage in my biopsies then I do not have Celiacs. She said it could just indicate gluten sensitivity, however from doing some research I have read that gluten sensitivity alone does not cause these antibodies to be produced.

Cara in Boston Enthusiast
Cara in Boston
Posted

A negative biopsy only means damage was not found, not that it was not there.  The biopsy can only confirm a celiac diagnosis, not rule it out.  If you have symptoms and a positive blood test, the "final test" would be to try the diet.  If your symptoms resolve (and your blood returns to normal) you can be 100% sure.

 

It is much more likely that your biopsy was falsely negative than your blood test falsely positive.

nvsmom Community Regular
nvsmom
Posted

A low positive tTG IgA (not double or quadruple the normal upper limits like yours was) can be caused by thyroiditis, diabetes, liver disease, crohn's, colitis, or a serious infection.  Those causes only happen in about 5% of all positive results.  A false positive tTG IgA is not common; a positive result is caused by celiac disease 95% of the time.

 

The EMA IgA only gives a positive result for celiac disease.  I have never, in three years of researching celiac disease and being on this board, seen a false positive EMA IgA test.  They are specific to celiac disease 98-100% of the time.  Also, the EMA IgA tends to detect more advanced disease. After the tTG IgA has started to create problems, the EMA IgA appears and attempts to wipe out the upper layer of the intestines with the intention of killing off whatever is causing the problem.  

 

A positive EMA IgA in addition to a positive tTG IgA is celiac disease - that is how I was diagnosed.

 

See this report (pages 8-12) on the details of testing: Open Original Shared Link

 

The endoscopic biopsy has a sensitivity that can be as low as 80%.  That means it can miss up to 20% of celiacs, or 1 in 5.  I agree with the others that you are a celiac and the biopsy missed the damage, and because your small intestine has the surface area of a tennis court, I'm surprised it doesn't happen more often.

 

Also, those tests will not indicate non-celiac gluten sensitivity (NCGS).  The tTG and EMA tests are NEVER both positive in someone with NCGS.  Ever. It is barely possible that someone with NCGS has diabetes, thyroiditis, or some other problem that would cause a slightly elevated tTG IgA, but if it is accompanied by celiac disease symptoms then it's celiac disease.  As somone around here once said, if it looks like a duck and quacks like a duck....

 

Best wishes.

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

Celiac.com Sponsor (A8-M):


MycasMommy Enthusiast
MycasMommy
Posted

A low positive tTG IgA (not double or quadruple the normal upper limits like yours was) can be caused by thyroiditis, diabetes, liver disease, crohn's, colitis, or a serious infection.  Those causes only happen in about 5% of all positive results.  A false positive tTG IgA is not common; a positive result is caused by celiac disease 95% of the time.

 

The EMA IgA only gives a positive result for celiac disease.  I have never, in three years of researching celiac disease and being on this board, seen a false positive EMA IgA test.  They are specific to celiac disease 98-100% of the time.  Also, the EMA IgA tends to detect more advanced disease. After the tTG IgA has started to create problems, the EMA IgA appears and attempts to wipe out the upper layer of the intestines with the intention of killing off whatever is causing the problem.  

 

A positive EMA IgA in addition to a positive tTG IgA is celiac disease - that is how I was diagnosed.

 

See this report (pages 8-12) on the details of testing: Open Original Shared Link

 

The endoscopic biopsy has a sensitivity that can be as low as 80%.  That means it can miss up to 20% of celiacs, or 1 in 5.  I agree with the others that you are a celiac and the biopsy missed the damage, and because your small intestine has the surface area of a tennis court, I'm surprised it doesn't happen more often.

 

Also, those tests will not indicate non-celiac gluten sensitivity (NCGS).  The tTG and EMA tests are NEVER both positive in someone with NCGS.  Ever. It is barely possible that someone with NCGS has diabetes, thyroiditis, or some other problem that would cause a slightly elevated tTG IgA, but if it is accompanied by celiac disease symptoms then it's celiac disease.  As somone around here once said, if it looks like a duck and quacks like a duck....

 

Best wishes.

 

 

How many thumbs up can I give this?  Not enough!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.