• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
troykm

Help Please My Test Was Positive And Negative

Rate this topic

Recommended Posts

OK so two weeks ago i had a biopsy done and it showed that i have celiac. The atrophy was there and so was the high levels of those cells (i forget the name) so my specialist said yep but she wanted all the blood work done as well. So i had the antibody test and a few others as well as the genetic test.

The antibody test is negative!!! How can this be? The genetic test is not in yet so we are still waiting on that one.

Can you get a false negative? The thing is the day after the blood test i began gluten free eating and after a week im already having some symptom relief. Not massive changes of course but my reflux has stopped, throat cleared up and excess mucass in throat has gone. Also ive noticed on day 5 and 6 i was a little sharper in the mind and not getting fatigue as much.

So what is going on? Can i have celiac without a positive antibody test? the specialist did say that the blood test could be in conclusive and she way want to take more biopsies. i know there is non celiac gluten intolerance but as the biopsy done first clearly showed celiac damage.

thanks

troy

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


OK so two weeks ago i had a biopsy done and it showed that i have celiac. The atrophy was there and so was the high levels of those cells (i forget the name) so my specialist said yep but she wanted all the blood work done as well. So i had the antibody test and a few others as well as the genetic test.

The antibody test is negative!!! How can this be? The genetic test is not in yet so we are still waiting on that one.

Can you get a false negative? The thing is the day after the blood test i began gluten free eating and after a week im already having some symptom relief. Not massive changes of course but my reflux has stopped, throat cleared up and excess mucass in throat has gone. Also ive noticed on day 5 and 6 i was a little sharper in the mind and not getting fatigue as much.

So what is going on? Can i have celiac without a positive antibody test? the specialist did say that the blood test could be in conclusive and she way want to take more biopsies. i know there is non celiac gluten intolerance but as the biopsy done first clearly showed celiac damage.

thanks

troy

It is possible to have celiac without a positive antibody test. This happens to many people, and it is why a lot of celiacs go undiagnosed. The biopsy used to be considered the "gold standard", and you have a positive biopsy.

When you say your bloodwork was negative, exactly what tests did your doctor do? Sometimes they don't do all of the available tests, they pick and choose. If you don't mind sharing, do get copies of your lab results and post them; people can give you better advice.

Sometimes lactose/casein intolerance can cause the flattened villi and increased intraepithelial lymphocytes. There is also a VERY rare condition that is inherited, that can cause flattened villi, but that is EXTREMELY rare. My bet would be on celiac or dairy damage, especially since you have already started feeling improvement on a gluten-free diet.

Share this post


Link to post
Share on other sites

If you've been traveling tropical sprue can cause a biopsy that looks like celiac. So an a viral infection. If you weren't sick any time near the biopsy and haven't been to the tropics it's probably blood-negative celiac. It happens because the antibodies are mostly in your gut, not your bloodstream. Blood tests sort of look in the wrong place.

Share this post


Link to post
Share on other sites

Yep, the blood antibodie tests are almost always correct when positive. But when negative they are not so reliable. The antibodies are mostly in the gut, doing their work, not wandering around the bloodstream aimlessly. That risk of false negatives is why people should go ahead and try the diet regardless of the test results. Even the endoscopy is not 100% reliable for negatives. If you have GI symptoms, then a diet change eliminating all gluten is a real good test by itself. After all, the point is to feel better not pass a medical test. And If you feel better and your symptoms improve after going gluten-free, that is an indication that something about gluten is making your body react. Between medical tests that are known to have problems, and your body's own opinion. and I'd give more weight to your bodies opinion.

Share this post


Link to post
Share on other sites

My biopsy was positive and my blood tests were negative. My GI doctor asked that I come back in, said the tests suggested I may have celiac but he was unprepared to diagnose me without genetic testing. It was my family doctor who looked at my page long list of symptoms and said yeah, don't waste your time going back to him, it's celiac go gluten free. I have no doubt that it's celiac and not something else since the few times I've been gotten with cc I have nearly immediate and horrible symptoms that couldn't possibly be caused by anything else.

Share this post


Link to post
Share on other sites
Ads by Google:


thanks guys, ill post my results on here when i get them. all i know is the antibody test were in the 'normal range'. as for the numbers I'm not sure yet, will find out when i see the specialist in a week.

As a side note, after my biopsy showed possible celiac, both my sisters (who have similar symptom profiles to me) went and got the antibody test. One was negative and the other the TTG was 300. Thats the one that should be under 24? So it seems she has it too and my other sister is not convinced by the negative test either as she has almost the same profile as me.

Last night i had my first gluten free pasta meal. After i ate a huge bowl of it, i suddenly realised i was not full. When i used to eat regular wheat pasta, i could only eat a small portion because after only a small amount my gut would bloat and my stomach would be so full (well it felt full) but after the huge bowl of gluten free pasta i was fine and able to have dessert.

Another thing that has begun to change although I'm not sure if its a placebo change LOL is now that its been a full week gluten free, when i wake up in the morning now, I'm fully awake! I used to wake up and be sluggish - sometimes for about 4 hours but the last 3 mornings once i woke up, i was really awake, does that make sense?

Anyway I'm staying gluten free for at least a year to see what else changes. Both my sisters are going gluten free too, and for the sister with the neg blood test she is going to have the genetic test too.

i get my genetic test back monday hopefully.

thanks guys :-)

Share this post


Link to post
Share on other sites

Good for you Troy. The gluten-free diet can be kind of rough the first months, so don't give up if you have a recurrence of symptoms. It takes some time for thing inside to heal.

Here's some light reading:

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

How bad is cheating?

Share this post


Link to post
Share on other sites


Ads by Google:


Anyway I'm staying gluten free for at least a year to see what else changes. Both my sisters are going gluten free too, and for the sister with the neg blood test she is going to have the genetic test too.

i get my genetic test back monday hopefully.

thanks guys :-)

You already have a positive genetic test, a much better one than any lab can provide. You have a first-degree relative who is celiac. The HLA-DQ testing pales in comparison because it only looks at one gene that is only loosely related to celiac. 30% of the US population has a so-called celiac gene. In contrast, you know with absolute certainty that you are genetically predisposed to celiac because your sister had such high TTG.

With a sister who is celiac and gluten-caused symptoms yourself there is no question that you should be on the diet.

Share this post


Link to post
Share on other sites

...

Another thing that has begun to change although I'm not sure if its a placebo change LOL is now that its been a full week gluten free, when i wake up in the morning now, I'm fully awake! I used to wake up and be sluggish - sometimes for about 4 hours but the last 3 mornings once i woke up, i was really awake, does that make sense?

...

Makes perfect sense to me, & I'm sure same too many others here.

I had to also go soy-free before getting the HUGE difference in wake-up mental state.

Wondering which new great things might be placebo-ey(sp?) is a fun game. :D

Share this post


Link to post
Share on other sites

Troy that is EXACTLY how I was for 30 years! I could never fully wake up- felt drugged until well past noon. I just thought I wasn't a morning person. The first thing I noticed gluten-free was that the drugged feeling left. When I woke up, I was awake. (Still bone crushingly tired, but alert and awake!) The fatigue took 7-8 months to lift, but the waking up part happened within days! It is a wonderful feeling!

Share this post


Link to post
Share on other sites


Ads by Google:


I'm so glad to hear these replies because I thought it was just me. :-)

I've noticed now that I'm 2 weeks gluten free I'm starting to get ear ache. Not like an infection, it's a muscle spasm. It happens once an hour or so just a quick twitch and then it's gone. Has anyone else had that?

Share this post


Link to post
Share on other sites

Hehe not to diminish any seriousness but it made me think of a scavenger hunt for symptoms. Or Go Fish.

"Nope, anyone got morning-only ataxia?"

Is the ear thing both ears?

Share this post


Link to post
Share on other sites

I'm so glad to hear these replies because I thought it was just me. :-)

I've noticed now that I'm 2 weeks gluten free I'm starting to get ear ache. Not like an infection, it's a muscle spasm. It happens once an hour or so just a quick twitch and then it's gone. Has anyone else had that?

If you are sure that it is a spasm, make sure you are getting enough potassium and magnesium. Especially if you are taking Vitamin D. Perhaps there is some sort of allergy going on here, and the eustachian tube is trying to drain?

Share this post


Link to post
Share on other sites

Makes perfect sense to me, & I'm sure same too many others here.

I had to also go soy-free before getting the HUGE difference in wake-up mental state.

Wondering which new great things might be placebo-ey(sp?) is a fun game. :D

I play that game. Placebo effect works wonderfully for me for about a week. If only I could come up with new, safe ideas weekly... B)

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
      108,390
    • Total Posts
      941,015
  • Member Statistics

    • Total Members
      66,402
    • Most Online
      3,093

    Newest Member
    Audrey’s Mom
    Joined
  • Popular Now

  • Topics

  • Posts

    • Welcome!  Here is more information about a gluten challenge: http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ I would personally go for the maximum amount of tine and would consume as much gluten as I could tolerate 1 to 2 slices a day.  Why?  Researchers really do not know who builds antibodies fast.  Some can do it in as few as a few weeks and others take much longer.  Where do you fit?  You do not know, so considering the maximum recommendation.   Do not be horrified about your doctor googling.  That is an excellent sign, in my opinion.  My neighbor is an ER doctor.  He googles all the time and combining that with his vast medical training and work experience, allows him to quickly help patients.    There is no way a doctor can know everything about disease and treatment.   I wish you well!  
    • I have not found any that are reasonable (a gluten-free kit is available on Amazon and they want  $50 ).  Either you make the GINGERBREAD walls from scratch (gluten free)  or just use cardboard as a base and “glue”  on gluten-free gram crackers or “stucco” (fondant)  with frosting or   We never eat the end product; however, the kids consume plenty of decorations while it is assembled.  I would not recommend handling a gluten gingerbread house.  It is too crumbly and the risk for cross contamination is great.  So, make a gluten free version or create a new holiday tradition.  
    • My daughter who is 9 and newly diagnosed went on a secret gluten binge about a month ago.  I had her gluten free cupcakes in a package next to the gluten containing cupcakes.  She decided to test it out and ate 3 or 4 mini gluten filled cupcakes in about 10 minutes.   She ended up super sick and threw up a few times.  It was a good learning experience for her.  She now turns down cupcakes at parties.   I am Room Mom for her class this year and bring both gluten free and store bought for the class.
    • Looks like you tested negative on the celiac blood tests.  Who ordered the tests?  Reticulin has not been used for more than a decade.   This makes me think that your doctor may not be so celiac-savvy.  Why does that matter?  Some 10% of celiacs are seronegative.  If celiac disease is strongly suspected, a  GI might want to confirm with an endoscopy.   Also, you did not say how long your gluten challenge was before that last blood test.  A challenge requires a person to be on a gluten diet for 8 to 12 weeks: http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Do you have any risk factors, like family history, another autoimmune disorder, IBS?   https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220 It seems like the Gluten Free diet is helping your current symptoms of joint pain and rashes.  So, then you would be considered Non-Celiac Gluten Sensitive/Intolerant.  That diagnosis is done when celiac disease has been ruled out.  I can see why he recommended the gluten free diet.  You felt better!   You are going to have to decide if pursuing a celiac disease diagnosis is necessary for you.  I wish you well.    
    • Anyone kbow if aleve or Advil is safe to take for gluten free?
  • Upcoming Events