Do I Really Have Celiac?

[whatzie]

i need help understanding my results:

 

i had a colonoscopy and endoscopy completed first. the results of the biopsy was that cells indicated celiacs disease so we moved on to the blood test:

 

here are my results:

TTG IGG - 5

EMA IGA - 224

TTG IGA - <2

 

GENE DNA:

CELIAC RISK HAPLOTYPE DETECTED

DQ2.5 (HLA DQA1*05 : DQB1*0201)

 

DQ2 HOMOZYGOUS - 31X EXTREMELY HIGH

DQ2/other high risk gene - 16X VERY HIGH

DQ2/DQ8 - 14X VERY HIGH

DQ8 HOMOZYGOUS - 10X HIGH

DQ2 HETERZYGOUS - 10X HIGH

DQ8 HETERZYGOUS - 2X MODERATE

DQ2/other low risk gene - <1X LOW

DQ2-, DQ8- <0.1X EXTREMELY LOW

 

based on the biopsies and these results my doctor said he will be giving my a diagnosis of celiac's disease. he asked me to come in next week to discuss the life changes that will need to occur. can anyone help me with this? do these results show celiac's?

 

 

[powerofpositivethinking]

welcome!

 

Can you post the reference ranges for your blood tests?

[kareng]

Sounds like you have Celiac but we need the ranges for the tests to know if they are positive. Not every lab counts the same way. A simple way to think of it is if one counts inches and the other uses centimeters. 20 inches is vastly different than 20 centimeters

[whatzie]

here are my results:

TTG IGG - 5     REF RANGE - 0-5 U/mL

EMA IGA - 224  REF RANGE - 91-414 mg/dL

TTG IGA - <2     REF RANGE - 0-3 U/mL

[nvsmom]

I would say, "probably". If you have symptoms, a positive test, and then symptoms resolve on the gluten-free diet, then I would said, yes you do.

 

A positive tTG IgA can also result from thyroiditis, diabetes, colitis and crohns, and chronic liver disease in about 5% of positive tests. If you have one of those health issues, it could cause your positive tTG IgA, but 95% of the time it is from celiac disease.

 

 

This site discusses the tests on pages 10-12:

Open Original Shared Link

[whatzie]

well according to the blood tests all are negative. however the endoscopy biopsy reports show findings of damage that coincides with celiac disease and of course the results of the gene dna tests. according to the nurse for the gi doc he will be diagnosing me with celiac's disease and i have to go see him this coming weds to go over what changes need to be made.

 

my other symptoms that have been going on for a few months are:

rashes

itchy skin

headaches

joint pain

nausea

vomiting

brain fog

tired all the time

constipation and/or diarhea

feeling ill

tired all the time

stomach pain

cramping

tingling in hands and feet

night sweats

not sleeping well

 

past blood tests show elevated sed rate, elevated complement c4  and elevated crp. (3 different times)

my face is swollen and lymph nodes by my left ear has been swollen since april.

rhuemotologist and gi think besides celiac's disease i also have possibly lupus or systematic inflammatory disease??

 

any help or information would be greatly appreciated.

 

thanks!

[CeliacInSenegal]

Given that your blood tests were all negative and the gene test is never conclusive, it sounds like the doc is mainly going on the biopsy and symptoms. It definitely could be Celiac, but there are also other conditions that can cause flattened villi similar to Celiac (giardia for example). It's worth researching the various differential diagnoses to see if you think any of them are likely, or maybe considering getting the blood tests done again elsewhere in case there was an error.

 

Since you are having symptoms, you can also do your own test by going completely gluten free for a couple of months and see if it makes a significant difference. That along with the biopsy findings would be a pretty strong signal that it's Celiac or at least gluten sensitivity. And if you do turn out to have other autoimmune conditions, those would also make Celiac more likely.

 

Good luck. I hope you get the right answer so you can get healthier.

[powerofpositivethinking]

I think that second test is an IGA serum test, but I'm confused why it has EMA in front of it   can anyone help me out on that?

 

whatzie,  are you able to get the DGP IgA and IgG versions of the blood test run?  

 

 

here are my results:

TTG IGG - 5     REF RANGE - 0-5 U/mL

EMA IGA - 224  REF RANGE - 91-414 mg/dL

TTG IGA - <2     REF RANGE - 0-3 U/mL

 

[whatzie]

Do I just ask my doctor to run those tests?

[powerofpositivethinking]

yes, your doctor should be able to order those tests as long as the lab everything gets sent to does them.  I'm in the US, and I know for sure Labcorp runs them.  There's more info about the accuracy of the tests posted in nvsmom's link above.  

 

 

Do I just ask my doctor to run those tests?

[frieze]

I think that second test is an IGA serum test, but I'm confused why it has EMA in front of it   can anyone help me out on that?

 

whatzie,  are you able to get the DGP IgA and IgG versions of the blood test run?  

yeah that confused me too.

[whatzie]

Maybe I read them wrong. I think ema was negative and the iga number was 224. No results showing for the gbd tests so maybe those were not run. I will ask the doctor when I go. Their office is stating they believe my testd were negative because I wasnt eating enough gluten.

Are you all stating that the symptoms dna gene test and biopsy results are not enough for a celiacs disease? Because the doctor is giving the diagnosis of celiacs disease. My gi doctor and rheumotologist believe I also have another autoimmune disorder. Maybe lupus or systematic inflammatory disease.

I also have been getting dizzy and it feels like I am in a whirlwind. It makes me so sick I throw up. This happen to anyone?

[nvsmom]

What is the gbd test?

 

Technically, doctors don't give an "official" diagnosis unless there are positive blood tests, a positive biopsy, and a positive response to the gluten-free diet. Luckily not all doctors are such sticklers so if it quacks like a duck and walks like a duck...  My doctor diagnosed me with just blood tests and never bothered checking how I was doing on the diet.  When I saw a rheumy for suspected lupus (that's not uncommon around here) she complained that I should have been biopsied. I just smiled and shrugged. (She told me my arthralgias were caused by celiac disease and I am cautiously believing her.)

 

If you have a positive biopsy, I would say it's case closed - celiac disease. If no tests are positive, and you react to gluten, it is either celiac disease or NCGI (non-celiac gluten intolerance), but luckily the treatment is exactly the same.

[whatzie]

Im sorry I meant dgp tests

[Mum in Norway]

Your ttG IgG looks borderline, right? And with a positive biopsi and genetic test, it seems pretty clare that you have celiac. I asume you had some reasons for suspecting celiac in the first place, as you had the biopsi done?

[powerofpositivethinking]

I would say you've got it as well whatzie.  it's great that your doctor is diagnosing you on biopsy and gene tests alone!  If you haven't been eating a lot of gluten then the DGP tests might be worthless.  The DGP IgG is the most specific test for celiac with a 99-100% specificity rating, and the DGP IgA is also really good.  As much as doctors like to give the ttg tests, they don't catch everyone.  If you want to get it done great as there is a chance you might get a positive, but if not, you've already got your diagnosis.

 

Here are some links:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

What makes the doctors think you have lupus or systematic inflammatory disease?  Did they suggest that you try the gluten-free diet first to see if symptoms begin to resolve, and then revisit another diagnosis if they don't?

[Chrisz1000]

What makes the doctors think you have lupus or systematic inflammatory disease?  Did they suggest that you try the gluten-free diet first to see if symptoms begin to resolve, and then revisit another diagnosis if they don't?

 

That would be the best way. I thought I had all sorts of allergies, immune diseases and problems at first. Having a period of gluten free, say 2 months minimum, should be long enough to tell you whether those 'other auto-immune disease' symptoms are clearing.

 

Celiac is the mother of all inflammatory diseases, its amazing how much one can be inflamed for so long. Those swollen lymph nodes and ear pain were a long standing one for me too!

[whatzie]

Your ttG IgG looks borderline, right? And with a positive biopsi and genetic test, it seems pretty clare that you have celiac. I asume you had some reasons for suspecting celiac in the first place, as you had the biopsi done?

Yes the TTG IgG is borderline. When the doctor ordered the colonoscopy and endoscopy we had not discussed Celiac's at all, I had never even heard of it. After the procedure he told me he had done several biopsies and then when i went for my follow-up that is when he told me the biopsies came back showing Celiac's.

[whatzie]

I would say you've got it as well whatzie.  it's great that your doctor is diagnosing you on biopsy and gene tests alone!  If you haven't been eating a lot of gluten then the DGP tests might be worthless.  The DGP IgG is the most specific test for celiac with a 99-100% specificity rating, and the DGP IgA is also really good.  As much as doctors like to give the ttg tests, they don't catch everyone.  If you want to get it done great as there is a chance you might get a positive, but if not, you've already got your diagnosis.

 

Here are some links:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

What makes the doctors think you have lupus or systematic inflammatory disease?  Did they suggest that you try the gluten-free diet first to see if symptoms begin to resolve, and then revisit another diagnosis if they don't?

I have been going through hell since April. Had a million blood tests done, ANA negative, RA negative, elevated complement c4, elevated sed rate, elevated crp. extremely low b12. other tests are off also, i just can't remember them all. the last time i went to the rheumotologist he stated he believes it is one of the 2 and stated that sometimes it takes awhile to have any concrete to go on. the gi doc tends to agree with him and thats when he also had me do the blood work for celiac after going over the biopsies with me. i go back to the gi on weds to go over the celiac stuff.

[Lock]

What is the gbd test?

 

Technically, doctors don't give an "official" diagnosis unless there are positive blood tests, a positive biopsy, and a positive response to the gluten-free diet. Luckily not all doctors are such sticklers so if it quacks like a duck and walks like a duck...  My doctor diagnosed me with just blood tests and never bothered checking how I was doing on the diet.  When I saw a rheumy for suspected lupus (that's not uncommon around here) she complained that I should have been biopsied. I just smiled and shrugged. (She told me my arthralgias were caused by celiac disease and I am cautiously believing her.)

 

If you have a positive biopsy, I would say it's case closed - celiac disease. If no tests are positive, and you react to gluten, it is either celiac disease or NCGI (non-celiac gluten intolerance), but luckily the treatment is exactly the same.

 

I agree with you, with the positive biopsy and the DNA, it is case closed. Technically, I think it is three out of four, if you include the DNA. So if OP responds to the gluten free diet, then there is three out of the four.

 

CeliacinSenegal, I've been told just being celiac can cause you to get a lot of parasites you normally wouldn't get. I'm sure that doesn't mean you can't have giardia without celiac. I didn't know that it could cause flattened villi on its own. My dog had giardia a couple times and I wonder if I picked it up too, because my immune system is all screwed up due to celiac.

 

Whatzie, your doctor is on the right track in my opinion. If you have a strong and profoundly positive result after going 100% gluten free, I think that should put it to rest. But based on your biopsy result, that is enough evidence for the doctor to prescribe a complete gluten free diet.

 

I'm on my first week of 100% gluten free. I have thrown out all my foods that I even suspected might have gluten, and I ordered a bunch of food from Gluten Free Mall.  Talk about a pick me up, it was like Christmas. They have all kinds of good stuff.