Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Positive Bloods But Negative Gene Test?
0

21 posts in this topic

The title basically says it, but I'll expand a bit.

About two years ago I had the first blood test to screen for celiac disease which came back as a 'borderline' positive. Since I was on a long waiting list for the biopsy, and I was quite anxious for a result, I requested the gene test. This came back as negative, so the Dr said no I def didn't have it, so we cancelled the biopsy and forgot about it.

Since then I have cut back significantly on gluten, but not completely eliminated it from my diet altogether as I felt a lot better.

Fast forward till now and I'm now seeing another Dr about my still ongoing fatigue and also wanting to know why I'm always still so low in iron, even though I'm always taking good quality iron tablets (which are taken with vit c for absorbtion).

She decided to test for celiac disease (I didn't mention my previous testing). This time it came back a more clear higher positive, I don't think is was through the roof high, but it was a clear high ie not borderline at all.

She asked me if I was eating gluten normally, but because I've cut right down, I am now doing the gluten challenge and she is going to re test me in four weeks (I've been on it for two weeks).

Anyway, I guess I'm wondering about three things:

1. I'm aware that over time something has increased?? (ie the blood result has increased) wondering if that is indicative of celiac disease?

2. Is it probable that if the bloods were positive that I don't have it?

3. If the gene test was negative is it really possible?

Thanks for your help

0

Share this post


Link to post
Share on other sites


Ads by Google:

The chances of a false positive on a blood test are almost zero. Celiac disease does happen outside the main two genes (DQ2 & 8) but it's uncommon. The best thing to do would be to go forward with the testing (biopsy and gluten free diet). Do you know what all of your test results were? It would be interesting if you copied them over.

0

Share this post


Link to post
Share on other sites

False positives on blood tests are practically unheard of. False negatives on biopsy and blood tests are fairly common though. If you have been gluten light that wouldn't stop the antibodies which is why your test was more strongly positive the second time around. No matter what the biopsy results are it would be a good idea to go strictly gluten free after the tests are done.

0

Share this post


Link to post
Share on other sites

I'd be interested in seeing your DNA marker results. There are some unusual combinations of the DQ gene that result in receptor sites which will bind small fragments of gliadin and intiate auto antibody production. It's possible that the molecular serology test offered by Prometheus Labs may give more information about the receptor site than the genetic tests. I have found the Wikipedia articles about HLA-DQ and each of the DQ classes and subgroups to be informative.

0

Share this post


Link to post
Share on other sites

I'd be interested in seeing your DNA marker results. There are some unusual combinations of the DQ gene that result in receptor sites which will bind small fragments of gliadin and intiate auto antibody production. It's possible that the molecular serology test offered by Prometheus Labs may give more information about the receptor site than the genetic tests. I have found the Wikipedia articles about HLA-DQ and each of the DQ classes and subgroups to be informative.

Thanks Mari, I will try and get a copy of that test too, I might be able to pick up a copy today or tomorrow.

Only this morning I pick up a copy of my bloods taken two weeks ago, since being on less gluten. Comparing the results to the original ones taken two years ago, I'm a bit confused. Since the tests were done in two different labs, they results are presented differently.

I'll put them below.

Blood collected two years ago:

Total IgA : 2.2 g/L (0.7-4.0)

Anti-tissue Transglutaminase IgA (anti-tTg IgA): 3.6U/ml (Negative < 2.0) (equivocal 2.0-3.9) (positive > 3.9)

Notes: Borderline levels of tTg IgA detected. Significance at this level is uncertain. Consider HLA DQ typing.

Blood collected two weeks ago:

Endomysial antibody : Negative

Tissue Transglutaminase IgA: 25 units (<20)

Total Serum IgA : 2.20 g/L (0.69 - 3.10)

Notes: Borderline IgA-tissue transglutaminase. coeliac disease in not excluded. Suggested repeat in 4-6 weeks on a gluten containing diet or referral for endoscopy and small bowel biopsy.

I don't know if this makes sense to any of you? Will try and get the gene results now.

Thanks for everyones advice.

0

Share this post


Link to post
Share on other sites




The gene tests for celiac and the gene tests for what they (medical researchers) are calling "gluten intolerance," are becoming more specialized all the time, as gluten intolerance gradually becomes recognized as a category to describe people who are sick from eating gluten, but do not seem to have the the "standard" genes for it.

This was from last year: "What do we know?"

http://www.celiaccentral.org/News/News-Feeds/View-Research-News/Celiac-Disease-Research/134/vobid--2264/

excerpt:

Dr Alessio Fasano medical director of the University of Maryland Center for Celiac Research also felt similarly. Yet in 2009 he was quoted as saying in Scientific American:

0

Share this post


Link to post
Share on other sites

OK, here is what the gene test report says, I don't know if it's in enough detail for people with a deep understanding of the genetic side of things.

HLA Typing for Coeliac Disease

Interpretation: Alleles associated with coeliac disease are ABSENT

Conclusion: The absence of DQ2 (DQB1*02) and DQ8 (DQB1*0302) and DQA1*05 makes the diagnosis of coeliac deisease unlikely.

Thanks again

0

Share this post


Link to post
Share on other sites

Your most recent blood results are certainly positive. You should do the endoscopy & then try the diet regardless.

Your genetic tests just say you're not DQ 2 or DQ 8...they don't actually say what you are...were there no other lines? Like a series of what looked like code?

0

Share this post


Link to post
Share on other sites

Your most recent blood results are certainly positive. You should do the endoscopy & then try the diet regardless.

Your genetic tests just say you're not DQ 2 or DQ 8...they don't actually say what you are...were there no other lines? Like a series of what looked like code?

No, that's all it said on the print out I've got, I typed it all out except the Drs name, dates lab etc...no codes at all. Frustrating.

0

Share this post


Link to post
Share on other sites

we have had several people here with half a celiac gene, and they only started testing for the alpha chains recently because there are some percent with half genes, like 6% I think I remember. Another 2% do not have any of the DQ2 or 8 alleles .

also, we have had some few here who were mistyped, one had a diagnosis and wanterd to check which genes she had because her son had DQ8 and DQ2, and her tests were negative for celiac!!! That is impossible. She phoned the lab and they sent te sample on to another lab and they found the DQ8.

Also, Enterolab found her DQ8 gene no problem.

When was your gene test done? Maybe it was done before they started testing the alpha chains.

Also, we have had at least two officially diagnosed celiacs here with DQ6.

I have DQ5.

0

Share this post


Link to post
Share on other sites

3. If the gene test was negative is it really possible?

There are no identified "Celiac genes", there are only genes associated with the disease. This means you can test positive for these genes, but not have the disease, or you can have the disease, but not test positive for the genes. They are indicators, they are not diagnostic.

1

Share this post


Link to post
Share on other sites

......

When was your gene test done? Maybe it was done before they started testing the alpha chains.

it was done in September 2009. Is that before they started testing differently?

0

Share this post


Link to post
Share on other sites

I think it was just around that time some started to test the alpha chains as well, so they might not have tested for them.

Another comment:

Some here actually phoned the lab, and they did have the full report but only reported the short answer to the doctor.

So maybe they can tell you if they just used the rapid test kit that only tests for the presence of DQ2 and DQ8 in the beta chains, or advanced to testing what genes there were.

I phoned my lab and they could not even tell me, so I ordered a test through enterolab privately. (their tests are done at the American Red Cross, and they only test for the beta chains)

I think my tests were done with this rapid test, a test kit that only looks for DQ2 or 8.

By the way, it is a bit harder to test for DQ8, DQ2 is easier detected.

0

Share this post


Link to post
Share on other sites

This is why I think genetic testing for celiac disease is a waste of time, for the most part. It can't tell you that you have it, and it can't tell you that you don't. Given the current testing, it can't even tell you if you might get it in the future, because no one tests for all the known genes associated with celiac disease and we don't even know all of the genetic elements which are associated with it (or how the association works).

You feel better with less gluten, your antibody tests show that you are producing autoantibodies to gluten: you have celiac disease.

2

Share this post


Link to post
Share on other sites

This is why I think genetic testing for celiac disease is a waste of time, for the most part. It can't tell you that you have it, and it can't tell you that you don't. Given the current testing, it can't even tell you if you might get it in the future, because no one tests for all the known genes associated with celiac disease and we don't even know all of the genetic elements which are associated with it (or how the association works).

You feel better with less gluten, your antibody tests show that you are producing autoantibodies to gluten: you have celiac disease.

Can I ask a question? I'm new to cealiac and am now gluten free. I feel very much better for it too. I was not one of the really bad cases like vomiting after a biscuit but I became malnourished. Do you think I could have like a Nan Bread or a Pizza once a month and get away with it or would that damage the villi?

0

Share this post


Link to post
Share on other sites

Deano. If you have been dx as celiac, the answer is no. No gluten. Ever. For the rest of your life. Even if you have no visible reaction to it, your immune system knows it is there and it will begin attacking your body. If you eat even a tiny bit of gluten, your immune system will kick into overdrive for at least the next 3 months. You will set yourself up for many more problems, including other autoimmune disorders and cancer, if you cheat.

You have been handed the cure- a 100% gluten free diet. Anything less than 100% and you WILL have ative celiac disease and you WILL end up much worse off than you were. Damage may be permanent.

I'm sorry if this sounds harsh. But when people do not take my dietary needs seriously because they "have a friend/uncle/cousin" with celiac disease who can eat "a little bit of gluten and is just fine" it makes my life very difficult.

You have celiac disease. If you are going to cheat, even a little, you might as well just be eating gluten all the time. There are more important things then really good pizza. Find them.

0

Share this post


Link to post
Share on other sites

Oh, and Meg123- you have celiac disease. Your doctors are clueless. Whatever the biopsy shows, do not let them convince you otherwise!

0

Share this post


Link to post
Share on other sites

Can anyone help with genetic test results:

DQ Alpha 1: 05:01,05

DQ Beta 1: 02:01,03

What does this mean?

Had positive blood tests of Ttg. Have fatigue, slightly low on iron but iron supplements bring it up, bloating after eating. No real other sypmtoms. Not deficent in B-12 or Vitman D on blood work. Had scope and saw scalloping of the 2nd and 3rd duodenum. Biposy results have not come back yet. Had all three kids tested and all were negative.. they are 7,12,and 14.

0

Share this post


Link to post
Share on other sites

Can anyone help with genetic test results:

DQ Alpha 1: 05:01,05

DQ Beta 1: 02:01,03

What does this mean?

Had positive blood tests of Ttg. Have fatigue, slightly low on iron but iron supplements bring it up, bloating after eating. No real other sypmtoms. Not deficent in B-12 or Vitman D on blood work. Had scope and saw scalloping of the 2nd and 3rd duodenum. Biposy results have not come back yet. Had all three kids tested and all were negative.. they are 7,12,and 14.

posting your lab results would be good....sometimes docs say "normal", when they are not.

0

Share this post


Link to post
Share on other sites

Can I ask a question? I'm new to cealiac and am now gluten free. I feel very much better for it too. I was not one of the really bad cases like vomiting after a biscuit but I became malnourished. Do you think I could have like a Nan Bread or a Pizza once a month and get away with it or would that damage the villi?

For a few years in the 90s, I didn't know better & was thinking what I could "get away with". There's a lot more at stake than just the villi. Celiac can affect every system in the body.

I think my health is affected to this day by that practice way back when. Symptoms can creep up so slowly they can be attributed to such non-alarming things as aging, instead of the occasional mostly non-symptomatic gluten.

Any celiac not 100% gluten-free is taking a risk bigger than they know, imho.

0

Share this post


Link to post
Share on other sites

For a few years in the 90s, I didn't know better & was thinking what I could "get away with". There's a lot more at stake than just the villi. Celiac can affect every system in the body.

I think my health is affected to this day by that practice way back when. Symptoms can creep up so slowly they can be attributed to such non-alarming things as aging, instead of the occasional mostly non-symptomatic gluten.

Any celiac not 100% gluten-free is taking a risk bigger than they know, imho.

I've seen my own GP. Now we having the other Antigen test. What other one. I thought I'd just had it. Get back to you when I know more.

0

Share this post


Link to post
Share on other sites

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
0

  • Forum Statistics

    • Total Topics
      103,346
    • Total Posts
      917,409
  • Topics

  • Posts

    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
    • Will my doctor test me? So many symptoms...
      Hi! I was hoping some of you might be able to tell me if my symptoms seem like good reason to be tested for celiac disease... I actually asked my doctor to test me (years ago) and she told me she would not test me because the test is expensive... However, I am now desperate to figure out how to manage my health issues and am willing to find a doctor that WILL test me if my symptoms seem to point to celiac...Here they are:
      I have been diagnosed with all of the following over the last 12 years (I am 22 years old, and have always been a healthy weight/slightly underweight, and quite active):
      Irritable Bowel Syndrome Fibromyalgia Anorexia (started when I was 10, I have been mostly recovered since I was 14) Depression Anxiety Panic Attacks Horrible mood swings (from suicidal to totally fine in a matter of minutes)
        Chronic constipation and bloating Acne   HOWEVER, no one in my family has been diagnosed with celiac....am I wrong to think I have it??
    • Weird Reaction
      Yes, I was surprised about the MSG in broccoli as well. I just had a quick look now as I couldn't remember where I had read it but some mushrooms have it to. A Google search will bring up a few things. I always just thought MSG was an artificial food enhancer!! Insecticides are still a big possibility though. Why do you not want to try organic? We buy organic when we can and fruits and veges that are in season are usually the best and cheapest.  Thank you for the link, Cristiana. Very helpful. I have an appointment with my Naturopath in a couple of weeks and going to have a blood test done before that. She is excellent. Very knowledgeable and loves her work. Until then I'm not taking any supplements. I generally eat pretty well anyway so we'll see what she says. In the past I have used B12 injections (aka Neo Cytamen) which I found much better and safer than taken orally and very cheap. The energy boost was very noticeable. I didn't know it helped with anxiety though. She has also had me on Magnesium, Probiotics and Vitamin D3 and I also make my own Liver Tonic (Milk Thistle, Dandelion Root Powder, L-Glutamine, Taurine and Choline Bitartrate) which I use from time to time for a quick detox. Too much of anything can be bad but I think iron can be not real good in large amounts. Deficiencies can be related to gut health and/or competing for absorbtion with something else you may be taking I found. I'm no expert though but just a few things I've picked up during research. My normal GP told me to just eat some more red meat but I want to speak to my Naturopath first before supplementing. Her knowledge on nutrition is a bit more up-to-date.  I was just sitting there at lunch today after feeling great all morning and had a "weird feeling" come over me. Just a not quite right feeling. Very hard to describe and nausea seems to have returned to. It's funny that as I get older any little thing I get I seem to think it's life threatening even though all the tests I get back say I'm in good health. I guess that's part of that dread and doom and gloom feeling I mentioned earlier. Wish that would go away.  
    • Gluten and panic attacks
      There are great gluten-free pizza crusts out there, as well as good dairy free cheese. I find the key is to add good toppings, e.g. meats, carmelized onions, other veggies, white anchovies. Life goes on. Congrats. Hope the good feelings keep up. 
    • Gluten and panic attacks
      Just want to update incase anyone can find this helpful. I have stopped eating grains and dairy and everyday I'm feeling more and more like myself. It's amazing and I don't really care that I won't eat a regular pizza again. I mean 4 months ago I would have said I would die without gluteny soft pizza, now I am happy to never eat it again if it means I will never have to suffer a panic attack.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,480
    • Most Online
      1,763

    Newest Member
    Luposgirl
    Joined