13 replies to this topic

[troykm]

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

[beachbirdie]

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]

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]

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]

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]

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]

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.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

How bad is cheating?
http://www.celiac.co...t-periodically/

[Skylark]

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]

...
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.

[MitziG]

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]

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]

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]

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?

[Skylark]

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.

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...