Test Result Confusion

[mythreegems]

Hi there - I am a new member. But I have googled and googled to death everything related to Gluten and celiac disease. I was thought to be gluten intolerant and was off gluten for 2 years, but was still having some issues. I then was referred to GI at the hospital I work at. I had the Celiac Panel, and EGD with biopsies, Hydrogen breath tests, and most recently they added an IgE Wheat test. First before the Celiac Panel I went back on gluten a full 2 weeks for testing purposes.

But I am confused.

I was negative on EVERYTHING but:

IgA deamiated Gliadin - after 2 weeks on Gluten I was 46.6 which is positive.

The rest of those tests were negative on the panel.

EGD was negative and all biopsies (I was eating gluten for 5 weeks before that).

This week I had the IgE Wheat test which was only 0.35 as result so pretty much negative.

SO based on all my research the IgA DGP being positive is positive for celiac disease and is most sensitive. but then why would the wheat test be basicially negative? She finally just referred me to a dietician for Celiac Diet and told me to go back to no gluten. I just dont get how that was positive and wheat negative. CONFUSED :-) They told me to get new pots and pans ect. Most places in MN that I know quit doing the EGD when the IgA DGP was positive - we are just old school.

I dont know, just have a lot going on and want to understand better.

Any help is appreciated!!!

Kelli

Mom to 8 year old GGB Triplets.

[EmiPark210]

There are other people who know more about the specific blood tests so I'll let them answer to those more specifically. The IgE Wheat test is for an allergy which is different and separate for celiac's though it is possible to have both. Open Original Shared Link

But if you are wanting to have a endoscopy to confirm damage within the small intestine (the "gold standard" of celiac's diagnosis, as my PCP told me), then you need to maintain at least a low level of gluten within your diet. 

 

Welcome to the forums!

 

Also... the University of Chicago Celiac Disease Center recommends a 12 week gluten challenge for any antibody tests and 2 weeks prior to a biopsy Open Original Shared Link for if you're wondering about the biopsies 

[mythreegems]

Thanks, I did have an EGD with biopsy which was negative.  Which is another reason I am so confused :-)

There are other people who know more about the specific blood tests so I'll let them answer to those more specifically. The IgE Wheat test is for an allergy which is different and separate for celiac's though it is possible to have both. Open Original Shared Link

But if you are wanting to have a endoscopy to confirm damage within the small intestine (the "gold standard" of celiac's diagnosis, as my PCP told me), then you need to maintain at least a low level of gluten within your diet. 

 

Welcome to the forums!

 

Also... the University of Chicago Celiac Disease Center recommends a 12 week gluten challenge for any antibody tests and 2 weeks prior to a biopsy Open Original Shared Link for if you're wondering about the biopsies 

[mushroom]

An EDG with biopsy performed five weeks after beginning a gluten free diet is not to be relied upon.  Healing begins to take place immediately upon the removal of gluten, and by five weeks could be not observable as damage.  If you combine that with the element of luck involved in the GI doing the biopsy of the damaged areas (the damage often has a patchy distribution) it really means nothing, compared to the fact that your IgA DGP was so strongly positive.  All other tests being negative also does not mean anything, because the DGP is the most sensitive of all the tests and will usually be positive earlier than the others which require a greater degree of damage.

 

I would consider myself to be celiac and go gluten free immediately.

 

Welcome to the forum and please ask as many questions as you need and stay in touch.

 

ETA:  As the previous poster says, your IgE allergy testing is not in conflict with your celiac testing.  Celiac is an intolerance to gluten, IgE is an allergy to wheat  ~~ they are apples and bananas.

[mythreegems]

Thank you.  Just to mention I was off gluten for 2 years unless contamination happened.  I was eating gluten for 5 weeks every day before the EGD.  Didnt want to be confusing. :-)

An EDG with biopsy performed five weeks after beginning a gluten free diet is not to be relied upon.  Healing begins to take place immediately upon the removal of gluten, and by five weeks could be not observable as damage.  If you combine that with the element of luck involved in the GI doing the biopsy of the damaged areas (the damage often has a patchy distribution) it really means nothing, compared to the fact that your IgA DGP was so strongly positive.  All other tests being negative also does not mean anything, because the DGP is the most sensitive of all the tests and will usually be positive earlier than the others which require a greater degree of damage.

 

I would consider myself to be celiac and go gluten free immediately.

 

Welcome to the forum and please ask as many questions as you need and stay in touch.

 

ETA:  As the previous poster says, your IgE allergy testing is not in conflict with your celiac testing.  Celiac is an intolerance to gluten, IgE is an allergy to wheat  ~~ they are apples and bananas.

[GFinDC]

Right, the body makes several different types of antibodies cells.  Having a positive reaction on one test is a solid positive result.  You don't need a positive on all the tests to prove there is an immune reaction.  A reaction is a reaction.  Your body is doing something in response to eating gluten that is not normal.

 

It is not real uncommon for us to develop additional food intolerances beyond wheat, rye and barley.  Some of us react to oats the same way.  And other foods like nightshades, soy, corn, dairy etc can cause reactions too.  So if you don't eliminate other foods that your body reacts to, you will still have symptoms.

[RobinL]

My doctor told me that you need to be on gluten at least once a day for 6 weeks for the blood test to work. I did that, and had similarly inconclusive results... and the doctor said even on gluten for 6 weeks, it could be not enough time to see a reaction (this is just for a blood panel, not an endoscopy).

 

So in my experience, you might not have been on gluten enough for the blood tests to work. I have read some forums that suggest 3 months. And for the endoscopy, it depends how many samples they take, from how many different places etc.

 

 

 

[mythreegems]

So, a strong positive IgA DGP of 46.6 is considered celiac.

When she said the biopsies were all negative she said she didn't believe it, since the IgA was so +++ after only eating gluten again for two weeks. But when she kept saying the EGD and biopsy was gold standard. So when that was negative I felt bad. But everywhere I checked that DGP was super sensitive and accurate. I guess that is why so confused. Add that in to a family who doesn't believe in gluten/gluten free I was happy for diagnosis.

Hoping the dietician has some good ideas for me. So ready to get off it again. Bought new pots and pans and kitchen stuff last night. Just need to stock up on groceries.

She too said that possible for more intolerances. But for sure the lactose and fructose knew are fine. The wheat one negative at 0.35. She said she wasn't ordering anything else at this time. Just the dietician. She put me on protonix too. My stomach is so distended I can barely breathe. What a miserable set off issues this entails huh.

Oh well, keep on plugging. :-) thanks for your help.

[Takala]

Oh, so you have acid reflux, too, besides the bloating ? 

 

The family will come around, at least the immediate family, if you insist they respect your choices, the older generation tends to be nearly impossible, because they really tend to be set in their ways and they'd rather keep eating the same old thing and complaining about their indigestion    .  There is a lot of popular media "pushback" against the gluten free concept right now, but almost all of it is being cleverly placed there by the various lobbying interests, who are playing tug of war with the farm ag subsidy budgets because they are concerned with the export market, and they see a slight slip in their domestic market.   The important thing is that you eat and cook in a way that keeps you healthy and functional. 

[mythreegems]

Mine said accurate blood test after a week for the sensitive ones.  For the negative ones I imagine just wasnt enough time or they just were really negative, but for as positive as that one is i guess that is what makes me most confused.  They say that specific one is very sensitive, and very accurate so that just makes me think too much HA.  It just was such a big reaction positive.  In only 2 weeks.  just seems odd.  They did 8 biopsies.  2 in one area, and 6 in another. 

 

 

My doctor told me that you need to be on gluten at least once a day for 6 weeks for the blood test to work. I did that, and had similarly inconclusive results... and the doctor said even on gluten for 6 weeks, it could be not enough time to see a reaction (this is just for a blood panel, not an endoscopy).

 

So in my experience, you might not have been on gluten enough for the blood tests to work. I have read some forums that suggest 3 months. And for the endoscopy, it depends how many samples they take, from how many different places etc.

[mythreegems]

My husband and HIS family are amazing about it.  My kids are too.  Just my parents and grandma.  We all know how crappy I been feeling - so I am not alone here.  :-)

Oh, so you have acid reflux, too, besides the bloating ? 

 

The family will come around, at least the immediate family, if you insist they respect your choices, the older generation tends to be nearly impossible, because they really tend to be set in their ways and they'd rather keep eating the same old thing and complaining about their indigestion    .  There is a lot of popular media "pushback" against the gluten free concept right now, but almost all of it is being cleverly placed there by the various lobbying interests, who are playing tug of war with the farm ag subsidy budgets because they are concerned with the export market, and they see a slight slip in their domestic market.   The important thing is that you eat and cook in a way that keeps you healthy and functional. 

[Cara in Boston]

your children need to be tested too.

[frieze]

yup, and those rascally parents as well, like that is very likely!

your children need to be tested too.

[mythreegems]

Well now I am more confused. Went to the dietician as they ordered and she saying only non celiac gluten intolerance. Grrrrr. I like where everything else I see with my positive IgA DGP of 46 says celiac disease and hospital where I go and work only says intolerance.

Frustrating

[GFinDC]

Hi,

 

Celiac disease testing is not perfect.  You don't automatically get perfectly accurate test results.  It's not an exact science.  Your body and mine are different, and the tests may show very different results if we both eat the same gluteny food for 2 weeks.  Some of the celiac disease centers here recommend 3 months eating gluten before doing an endoscopy.

[nvsmom]

A lot of the medical community is not up to date on celiac testing. You are correct in that the DGP IgA test is very specific to celiac and very sensitive - meaning you have celiac. Other tests, like the (anti-gliadin) AGA IgA, are often mixed up with the newer (deaminated gliadian) DGP IgA tests, and were not nearly as reliable. DGP testing, and EMA testing are thought to be the most accurate tests out there.

 

Your intestine damage was probably patchy. I highly doubt the villi blunting is uniform throughout the guts of most people. When you consider that the surface area of the small intestine is roughly the size of a tennis court, it's easy to imagine how a tiny biopsy sample could miss the damage.

 

On the other hand, even if it is NCGI, that is still a serious health problem (although it doesn't cause a positive DGP) and requires the same treatment as celiac disease. I would just declare yourself a celiac and move forward with the gluten-free diet.

 

Best wishes. 

[mythreegems]

Thank you. That was the response I hoped for. :-) yes my result even says deamiated gliaden IgA :-) whohoo. Never been so happy to have a disease lol. Proof to that family of mine ha. Thanks again. I appreciate it and am sure I will have more questions to come.

[nvsmom]

LOL  Woohoo isn't the usual response to a positive DGP test! LOL  I know what you mean though. it is nice to have answers after all that time... and if you have to have an illness, celiac isn't the worst - at least we, the patients, have full control over how we treat the disease.  

[mythreegems]

At this same time I also have mono for the 9th time mixed with the flu. Yeah I'm so lucky lol.