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

Help Please My Test Was Positive And Negative

troykm

By troykm
in Doctors

Recommended Posts

troykm Apprentice
troykm
Posted

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

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

Celiac.com Sponsor (A8-M):


beachbirdie Contributor
beachbirdie
Posted

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.

Skylark Collaborator
Skylark
Posted

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.

GFinDC Veteran
GFinDC
Posted

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.

Adalaide Mentor
Adalaide
Posted

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.

troykm Apprentice
troykm
Posted
  • Author

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 :-)

GFinDC Veteran
GFinDC
Posted

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

https://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?

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

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.

tom Contributor
tom
Posted

...

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

MitziG Enthusiast
MitziG
Posted

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!

troykm Apprentice
troykm
Posted
  • Author

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?

tom Contributor
tom
Posted

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?

frieze Community Regular
frieze
Posted

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?

  • 2 weeks later...
Skylark Collaborator
Skylark
Posted

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)

Archived

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

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


  • Member Statistics

    • Total Members
      127,835
    • Most Online (within 30 mins)
      7,748
    Lucy20
    Newest Member
    Lucy20
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Hidden Gluten in distilled vinegar

      By knitty kitty · Posted

      @Manaan2,  I'm so happy to hear you're going to try thiamine and magnesium!  Do let us know the results!   You may want to add a B 50 Complex with two meals of the day to help boost absorption.  Thiamine interacts with each of the other B vitamins which are all water soluble.   When supplementing magnesium, make sure to get sufficient calcium.  Calcium and magnesium need to be kept in balance.  If you choose a calcium supplement, take two hours apart from magnesium as they compete for absorption.  Take Calcium with Vitamin D.  Vitamin D helps calm the immune system.   For pain, I use a combination of thiamine, B12 Cobalamine, and Pyridoxine B6.  These three vitamins together have analgesic effects.  My preferred brand is "GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets".  Alinamin is another form of thiamine.  It really is excellent at relieving my back pain from crushed vertebrae without side effects and no grogginess.   Look into the low histamine version of the Autoimmune Protocol Duet (Dr. Sarah Ballentyne, a Celiac herself, developed it.)  It really helps heal the intestines, too.  It's like a vacation for the digestive system.  Add foods back gradually over several weeks after feeling better.   I'm so happy to have pointed the way on your journey!  Let us know how the journey progresses! P. S. Add a Potassium supplement, too.  Potassium is another electrolyte, like magnessium, that we need.
    • Manaan2
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Opinions on my test results/symptoms

      By BIg Nodge · Posted

      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By cameo674 · Posted

      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
    • Scott Adams
      Nandos improper preparion celiac childrens food

      By Scott Adams · Posted

      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
×
×
  • Create New...