Test Results Please Help

[Soonerman]

Doctor wasn't much help in telling me either way; basically could be or couldn't be. I was hoping that you all would be more help, and I sure would appreciate it. The results were hard to read due to columns being askew, but here are what I believe my results to be:

Genetics:

HLA-DQ2 - Positive

HLA-DQ8 - Negative

I have seen where around 90% Celiacs are DQ2 Positive, but not all DQ2 Positive are Celiacs or something like that.

Antibodies:

TTG Antibody, IGA - <3 (Negative because <5)

- States "TNP-Reflex testing not required" for IGA and Endomysial Antibody Titer it looks like

IGA, Serum or TTG Antibody, IGG could be 158 mg/dL (I can't tell the columns are not lined up)

- If it is IGA serum the reference range is 81-463 so I guess it would be normal

- If it is TTG Antibody, IGG it looks like positive is >10

Could someone who has been tested or knows about testing/results please give me some insight? I would like to know if 158 mg/dL is positive or not and what it means if it is along with the positive genetic marker. My doctor does not know much about it and has dismissed the antibodies as all being negative, and I am not so sure that is correct yet.

Thank you

[GlutenWrangler]

It's kind of difficult to analyze the results that you have given. The one thing that is clear is that you have the DQ2 gene. I would suggest seeing a gastroenterologist in order to get a thorough and accurate evaluation for Celiac Disease. It's useless to deal with doctors who don't know what they're doing. Good luck,

-Brian

[Soonerman]

What does positive DQ2 tell me? Just that it is possible for me to have Celiacs, or that it is probable? I really don't want to have to get scoped...again... I just had that done within one year...but no biopsy because it wasn't suspected at that point. Isn't there any way to get a good idea if I have Celiacs or if I am allergic to gluten without a biopsy? I thought the reason I did the blood test was to tell me yes or no, or at least likely or not likely. Plus isn't it possible that the biopsy would be negative anyways, especially if the disease has not progressed far enough to demonstrate villia erosion (or whatever).

I did Gluten Free Diet for over a month, and I felt tons better. While this may be good enough for me, With gluten-free I really eliminated alot of foods that could have been the problem, like wheat and dairy (I eliminated milk and only used soy dairy products during the diet also). So I would like to be sure what the problem food is, if that is the problem. Also I believe other family members may be Celiacs (and had brother do gluten-free with me and he felt better), but they think I am crazy like there is no such thing. My brother thinks I am paranoid and won't do gluten-free even though he felt better because he says I have not even been diagnosed. And he is too stubborn to even get blood test.

I don't expect anyone here to tell me that I have Celiacs, but maybe to see my results and from experience give me some information and/or opinions.

Thanks again

[AudreyT]

I can't help with this, I am new here and just waiting on my tests results as well, but just wanted to wish you luck in getting a clearer picture!

[lizard00]

Hi there

Just because you have the gene doesn't automatically mean that you have Celiac, but obviously cannot be ruled out. BUT your dietary response is enough to show that gluten isn't good for you.

Did you have your blood test AFTER you had been gluten-free? That makes a difference. IF you are not consuming gluten, your tests have a good chance of coming out neg. My test came back the same as yours; I had been gluten-free for a month. But going on my dietary response, I KNOW gluten is bad for me, so I stick with that.

And if you cut out dairy and gluten at the same time, try dairy back and see what your reaction is. I can tolerate dairy in small amounts, but there are many people who cannot- especially when beginning the gluten-free diet.

I hate to tell you that my test was an inconclusive as yours, but it was. My DR didn't even know that you were supposed to be eating gluten for the test...

However, if you feel that a concrete dx would help you and your brother, it's best to find a good GI and go from there.

I wish you the best!

[Soonerman]

I can't help with this, I am new here and just waiting on my tests results as well, but just wanted to wish you luck in getting a clearer picture!

Thank you. I would be very interested if you could tell me your results and what your doctor says once you get them back.

[Soonerman]

Hi there

Just because you have the gene doesn't automatically mean that you have Celiac, but obviously cannot be ruled out. BUT your dietary response is enough to show that gluten isn't good for you.

Did you have your blood test AFTER you had been gluten-free? That makes a difference. IF you are not consuming gluten, your tests have a good chance of coming out neg. My test came back the same as yours; I had been gluten-free for a month. But going on my dietary response, I KNOW gluten is bad for me, so I stick with that.

And if you cut out dairy and gluten at the same time, try dairy back and see what your reaction is. I can tolerate dairy in small amounts, but there are many people who cannot- especially when beginning the gluten-free diet.

I hate to tell you that my test was an inconclusive as yours, but it was. My DR didn't even know that you were supposed to be eating gluten for the test...

However, if you feel that a concrete dx would help you and your brother, it's best to find a good GI and go from there.

I wish you the best!

I figured biopsy was the only way to know for sure, but I can't do that again, plus there is no guarantee that even if gluten is the problem that a biopsy will show it; So seems like almost impossible to get a diagnosis. Only thing the scoping told me about 8 months ago was I have a hiatel hernia and a spastic colon (IBS I guess). I had been eating gluten for around a month before the blood test, but was gluten free for a month and a half before that. I knew I had to be eating gluten before the test so I hope a month was enough after being gluten free. Because I cut out wheat and dairy I don't feel that I can say for sure it was cutting out the gluten that made me feel better. Thanks for the input, I appreciate all the information I can get.

[lizard00]

The other possibility is that it is an allergy, which my GI told me was a possibility. That would be another suggestion... That would be done with a blood test, preferably done by an allergist.

You said you were gluten-free for a month and a half, then ate gluten for a month and now you are gluten-free again?

How did you feel the month you ate gluten? Did you eat dairy as well?

[elye]

Here's the thing...

The blood panel can rule the disease IN, but cannot rule it OUT. False negatives happen, and from all of the research I've done and people I've talked to, it sounds like they happen regularly.

The biopsy has always been considered the gold standard of testing for celiac, but false negatives can happen there, as well. Damaged areas can be easily missed, as you have 22 feet of lower intestine. And then there are those who are gluten intolerant and have no intestinal damage present, but other symptoms. The only truly accurate diagnostic tool for this condition is dietary response. This can be a real pain for people who need documented "proof" of celiac for insurance reasons. If this isn't a concern for you, I would stay gluten-free, and also eliminate dairy at first. Then, I would slowly re-introduce the milk after a couple of months and see how you feel.

Good luck!

[Soonerman]

The other possibility is that it is an allergy, which my GI told me was a possibility. That would be another suggestion... That would be done with a blood test, preferably done by an allergist.

You said you were gluten-free for a month and a half, then ate gluten for a month and now you are gluten-free again?

How did you feel the month you ate gluten? Did you eat dairy as well?

I am not gluten free again, as I am still not sure where to take the testing now; such as allergies. I am probably going to an allergist to get tested for food allergies; I don't know the best one(s) though, I just know about the prick test and blood testing. I am pretty sure he will go for the prick test; I just hope it is accurate.

Basically I ate gluten for a month prior to my testing, which was December 14, and have been eating without restrictions since. I feel bad and have felt bad since resuming the "regular" diet, and yes I do eat dairy now I only cut it out for the month and a half I was gluten free.

The problem is that I haven't ruled out gluten and I haven't had it declared as the problem. I guess food allergy testing is the next step to rule wheat/dairy out or find out it could be the problem. I am also debating candida elimination diet to see how that goes since my gluten free diet was very similar except for the fresh fruit I was eating.

[Soonerman]

Here's the thing...

The blood panel can rule the disease IN, but cannot rule it OUT. False negatives happen, and from all of the research I've done and people I've talked to, it sounds like they happen regularly.

The biopsy has always been considered the gold standard of testing for celiac, but false negatives can happen there, as well. Damaged areas can be easily missed, as you have 22 feet of lower intestine. And then there are those who are gluten intolerant and have no intestinal damage present, but other symptoms. The only truly accurate diagnostic tool for this condition is dietary response. This can be a real pain for people who need documented "proof" of celiac for insurance reasons. If this isn't a concern for you, I would stay gluten-free, and also eliminate dairy at first. Then, I would slowly re-introduce the milk after a couple of months and see how you feel.

Good luck!

Thank you, that does sound like a good idea. If I am negative for wheat and dairy from the allergy testing I am going to do to rule them out, then I am definitely going gluten-free again and if I feel good again. That is all I need. I just can't believe there isn't more conclusive testing yet and that so many doctors know so little about this. I get more information here than from my doctors, and I am so glad that I can come here for information it is about all I have.

[elye]

I just can't believe there isn't more conclusive testing yet and that so many doctors know so little about this. I get more information here than from my doctors, and I am so glad that I can come here for information it is about all I have.

It is incredible, isn't it? Such a common condition, and so little is known about it in the medical community, and it remains highly undiagnosed. I have a couple of niggling suspicions as to why that might be, involving Big Pharma and how much money they stand to lose if gluten problems are diagnosed when they should be.

...But that's a whole other post....!

[Soonerman]

Doctor wasn't much help in telling me either way; basically could be or couldn't be. I was hoping that you all would be more help, and I sure would appreciate it. The results were hard to read due to columns being askew, but here are what I believe my results to be:

Genetics:

HLA-DQ2 - Positive

HLA-DQ8 - Negative

I have seen where around 90% Celiacs are DQ2 Positive, but not all DQ2 Positive are Celiacs or something like that.

Antibodies:

TTG Antibody, IGA - <3 (Negative because <5)

- States "TNP-Reflex testing not required" for IGA and Endomysial Antibody Titer it looks like

IGA, Serum or TTG Antibody, IGG could be 158 mg/dL (I can't tell the columns are not lined up)

- If it is IGA serum the reference range is 81-463 so I guess it would be normal

- If it is TTG Antibody, IGG it looks like positive is >10

Could someone who has been tested or knows about testing/results please give me some insight? I would like to know if 158 mg/dL is positive or not and what it means if it is along with the positive genetic marker. My doctor does not know much about it and has dismissed the antibodies as all being negative, and I am not so sure that is correct yet.

Thank you

Does anyone else have any insight into these results? Also has anyone ever used or know anything about metametrix clinical laboratory for food allergies/sensitivities and also some other testing for celiac and possibly candida? I would like to know how accurate the testing is if anyone can enlighten me. Thanks