Looking For Input On Test Results

[MsCurious]

Hi community,

I'm new to all of this and trying to make sense of it... any help or thoughts would be appreciated.

I have tried to figure out what these test results mean, and I'm waiting for HLA-DQ2 HLA-DQ8 results ... that should be back this week, but these mean nothing to me, can anyone explain?

TISSUE TRANSGLUTAMINASE IGG 0.40 <0.90- Index

TISSUE TRANSGLUTAMINASE IGA 0.42 <0.90- Index

It appears to be normal... but then I think .. why do I have ANY antibodies if there's not a reason for them? Here's my story in a nutshell, makes me wonder...

As far back as age 9 or 10 for certain, I can remember having tummy aches

[Dixiebell]

Welcome to the forum MsCurious.

Did they do any other tests besides those?

Celiac tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA and IgG

Total IgA level

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG (this is a newer test)

IBS is really a symptom of something else going on. Many here were diagnosed with IBS before celiac. Have you had testing for nutrient deficiencies? The unexplained brusing could be low iron. The fatigue and joint pain could be low vit D.

Did your Dr. biopsy your shingles? There is Dermatitis herpetiformis (DH) which I believe can be mistaken for shingles if not tested properly.

[MsCurious]

Welcome to the forum MsCurious.

Did they do any other tests besides those?

Celiac tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA and IgG

Total IgA level

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG (this is a newer test)

IBS is really a symptom of something else going on. Many here were diagnosed with IBS before celiac. Have you had testing for nutrient deficiencies? The unexplained brusing could be low iron. The fatigue and joint pain could be low vit D.

Did your Dr. biopsy your shingles? There is Dermatitis herpetiformis (DH) which I believe can be mistaken for shingles if not tested properly.

Hi Dixiebell,

Thanks for your reply. After reading about celiac disease I asked my doctor about it, and he said based on my symptoms "it is reasonable to test" for celiac disease, but I'm not sure what the results mean. The other results I've seen have had much lower numbers even in the normal range, so I don't know if this was a different set of tests or what. I agree with you... in my opinion IBS seems like a catch-all for "we don't really know what's wrong but we know you have digestive issues...so live with it". I dont' really want to end up in that hopeless-feeling category.

Those were the only two tests he ordered originally, but I told him, I would feel a lot more comfortable with checking the genetic markers, so I know if I can completely rule celiac disease out, or if it is a possibility. My body tells me, I need to go gluten-free, based on how I feel when I don't eat gluten, and how horrible I feel when I do. No biopsy of shingles, but it had all the raging pain and rash and path of shingles. I have no doubt at all thats what it was. 5 weeks from start to finish. Thank goodness I didn't have the residual neuropathy that plagues many people that get it. BUT, his comment about having a "compromised immune system" .... makes me wonder about celiac disease. THAT would make my immune system compromised, and make me more likely to have the latent chicken pox virus reactivate.

[MsCurious]

Oh, and also, my doctor knew which tests he wanted to order, but didn't really seem to be up on the latest tests, and the sequence of how most celiac doctors test and diagnose. I found a video lecture (done by Dr Joseph Murray) from Mayo Clinic in Rochester, MN, which was directed to other doctors, and I forwarded it to my doctor. I hope he watched it. I did, and it was very technical, but what I did get out of it was that the tests that my doctor ordered are considered obsolete at Mayo, and they have new tests that are preferred. Not sure how I got into the professional site where the video lecture was located, but I'm glad I did!

[mushroom]

For some reason, most doctors seem to be hung up on tTG testing and can't move beyond that into the 21st century. It is such a shame. Most patients these days more know about it than their doctors. I am sorry you had the experience. Your tTG tests were definitely within normal limits as they say. But that does not mean that the other tests would also be negative - that's why they run a celiac panel.

With regard to your "shingles", did they leave a purplish scar behind?

[MsCurious]

For some reason, most doctors seem to be hung up on tTG testing and can't move beyond that into the 21st century. It is such a shame. Most patients these days more know about it than their doctors. I am sorry you had the experience. Your tTG tests were definitely within normal limits as they say. But that does not mean that the other tests would also be negative - that's why they run a celiac panel.

With regard to your "shingles", did they leave a purplish scar behind?

Yes, they did, well... purplish red.. but they are fading a little. Hopefully, they will be gone in a few months.

[MsCurious]

Oh, I guess I should ask why you asked about the scarring? Is there something I should know?

Also, the reason I asked him to do the genetic marker testing was that I wasn't comfortable with the negative results, and wanted to either completely rule out celiac disease, or have reason to continue my search for answers with regard to celiac disease or gluten intolerance of some sort. Does that make sense? Just trying to figure it all out.

[mushroom]

Yes, that was not an idle question. I don't think it was shingles you had, I think it was dermatitis herpetiformis, the skin form of celiac disease. Hub has it, and he broke out in a line of blisters on his forehead. The blisters burst and the thing itched and burned like crazy, and when it healed it left a purple scar which has now faded to white.

[MsCurious]

Yes, that was not an idle question. I don't think it was shingles you had, I think it was dermatitis herpetiformis, the skin form of celiac disease. Hub has it, and he broke out in a line of blisters on his forehead. The blisters burst and the thing itched and burned like crazy, and when it healed it left a purple scar which has now faded to white.

Pretty possitive it was shingles. Started with HORRIFIC stabbing pain that felt like I was being stabbed through my back and a few days later it felt like stabbing through my chest. Then rash developed in a line from my back to my chest... only on one side of my body.. EXCRUTIATING pain, following a nerve path. It lasted for five weeks. Wouldn't wish it on my worst enemy.

[frieze]

The gene test WILL not rule out celiac/gluten intolerance.

[MsCurious]

From what I've read, it does rule out Celiac. HLA-DQ2 and HLA-DQ8 are always present with Celiac, but you can have those genetic markers and NOT have celiac, but then you do have the possiblity of developing it. You can have non-Celiac gluten sensitivity/intolerance without those two genetic markers and they have associated other markers with this. From what I've read,and what my doctor said... if you don't have DQ2 or DQ8 ... that rules out Celiac.

[frieze]

From what I've read, it does rule out Celiac. HLA-DQ2 and HLA-DQ8 are always present with Celiac, but you can have those genetic markers and NOT have celiac, but then you do have the possiblity of developing it. You can have non-Celiac gluten sensitivity/intolerance without those two genetic markers and they have associated other markers with this. From what I've read,and what my doctor said... if you don't have DQ2 or DQ8 ... that rules out Celiac.

Apparently those two account for 90+% of the KNOWN/DIAGNOSED celiac disease.

but there is the remaining few % that are not either....and per this board there are several others being acknowledged in Europe....good luck

[MsCurious]

Apparently those two account for 90+% of the KNOWN/DIAGNOSED celiac disease.

but there is the remaining few % that are not either....and per this board there are several others being acknowledged in Europe....good luck

Did some further checking on the internet and this is part of what I found:

DQ2 & DQ8, the two major types, are present in 90-99% of people who have Celiac disease. They are also present in approximately 35-45% of people in the U.S., especially those of Caucasian race of Northern European ancestry. The prevalence in the U.S. of Celiac disease is 1% and though a prevalence of 1 in 100 is very common and much higher than had been believed for years, this is only a fraction of the genetically at risk that actually are confirmed to have Celiac disease by abnormal blood tests and small intestine biopsies. However, the number of people who report a response to a gluten-free diet is much higher.

So you're right... its not absolute... I guess nothing ever is! Thanks for the eye opener.

This was from By Dr. Scot Lewey That's a really interesting article from ezine articles.

I'm really thinking, I'm a NCGS and not celiac disease, but time will tell with a gluten-free diet. Thanks for sharing your thoughts. Everybody here is so helpful!

[mushroom]

From what I've read, it does rule out Celiac. HLA-DQ2 and HLA-DQ8 are always present with Celiac, but you can have those genetic markers and NOT have celiac, but then you do have the possiblity of developing it. You can have non-Celiac gluten sensitivity/intolerance without those two genetic markers and they have associated other markers with this. From what I've read,and what my doctor said... if you don't have DQ2 or DQ8 ... that rules out Celiac.

Forgive me for this, but I do have to laugh. If you take out the "I've read" bits this sounds just like what the doctors spout to us. In fact half of them don't even recognize non-celiac gluten intolerance

[MsCurious]

Forgive me for this, but I do have to laugh. If you take out the "I've read" bits this sounds just like what the doctors spout to us. In fact half of them don't even recognize non-celiac gluten intolerance

Well, hopefully that's changing rapidly! As you can see from my post above this one... there is evidence "out there" that the doctors and researchers are finally realizing that NCGS IS real. I have soooo many questions!

[MsCurious]

Forgive me for this, but I do have to laugh. If you take out the "I've read" bits this sounds just like what the doctors spout to us. In fact half of them don't even recognize non-celiac gluten intolerance

Well, hopefully that's changing rapidly! As you can see from my post above this one... there is evidence "out there" that the doctors and researchers are finally realizing that NCGS IS real. I have soooo many questions!