What can these test results tell me?

[CatchyUserName 1]

Hi,

I'm newly diagnosed.

Had endoscopy & colonoscopy first, then one week later GI's office called and told me to go have bloodwork done. About one week after the bloodwork GI's nurse called saying I have Celiacs and to go ahead and start a gluten-free diet. Didn't speak to the doctor, I follow up with him  July 27th.

Test Results:

EMA Titer 1:20

Gliadin Deamidated AB - IgA 17 (<20 antibody NOT detected); IgG 68 H (>20 antibody detected)

Tissue Transglutaminase AB - IgG 1 (<6 antibody NOT detected); IgA 28 H (>4 antibody detected)

Total IgA 153 (Range 81-463) 

I've done some reading and *think* I understand these results, except for one thing... Does it tell me anything that my TIgG and Gliadin IgA are lower (not detecting antibodies)? I would have assumed both test IgAs would be low or both IgGs but not flip flopped. 

I didn't follow a gluten-free diet prior to bloodwork, however, I do follow a predominately whole food based diet, could that account for any of these numbers? I guess my real question is: can these numbers tell me anything other than, "you have Celiac Disease" ?

My understanding is that these numbers cannot tell you anything about the severity, gluten sensitivity or level of damage... is that correct? I would like to extrapolate the most I can from this test. Is there anything else I might be able to surmise before I see my GI in a few weeks?

Thanks so much, I've already learned a lot from poking around on these forums!

[plumbago 53]

I am still learning myself, but one thing I don't understand is why your tTG IgA is high but the tTG IgG is low. Also, I don't hear of many cases where the 'scopes precede the bloodwork ! Doctors should be telling you about abnormal labwork and most especially new diagnoses, not nurses.

Plumbago

[ravenwoodglass 1,436]

We don't have to be positive on all blood tests for a diagnosis. That is why they run a panel rather than just one test. It sounds like your doctor may have suspected celiac and saw damage during the endoscopy that prompted him to do biopsies that were positive. He then ordered the blood work to confirm. Kind of backwards but at least you know you have ruled out other posible problems.  You should go to the Coping section of the board and check out the Newbie 101 thread at the top. It will have a lot of good info for you. Ask any questions you need to ask and I hope you heal quickly.

[emma6 25]

i dont think its that unusual, mine was similar, my TTG IgA was >250 and my TTG IgG was 2 with the negative range being <15  everyone tests differently

[tessa25 80]

To me, not a doctor, you failed 3 out of 5 celiac tests. You only have to fail one test to have a gastro want to do an endoscopy to confirm celiac.

EMA positive

DGP IGG 68 is very high

TTG IGA 28 high

Everybody tests different, that's why there are so many tests, to catch everyone. They don't indicate severity. The endoscopy results will tell you how much damage. Just ask them to send you a copy of all records for your files.

As said above, check out the Newbie 101 thread. There is a gluten free equivalent or recipe for most foods out there, so you just have to switch brands and be careful eating out.

[TexasJen 42]

Actually, I was diagnosed the same way: endoscopy first then labs. I was anemic so they did a scope looking for the source. Since I do not have GI Symptoms(which is true for 1/2 of celiacs)  and I have no family history, no one was suspecting it. Once the gastroenterologist got the results of the small bowel biopsy showing villous atrophy, he suspected celiac and ordered the labs to confirm. There are other malnutrition syndromes that can cause villous atrophy. It is common for the nurse to call with preliminary results or brief discussion and then to make a followup appointment with the doc to go over the results in more detail. 

I agree with getting a copy of the pathology report. If the pathologist did their job, it will reveal the villous atrophy and the extent of the damage (either staging it with Marsh staging system or categorizing - mild, moderate, severe).  That is the way to tell how bad it is - not through the blood work.

I think it's good in this case to do your research before the appointment and then make a list of questions that you have so that you make sure to get everything answered. Also, look at your insurance and see if you can get a list of dietitians in the area that are covered by your insurance. Then compare that list with the ones that the GI recommends. Since diet is the primary treatment and the diet is hard to follow, it is good to get solid advice from the beginning to start your healing.

Good luck!

 

[Gemini 871]

On 7/4/2017 at 8:56 AM, tessa25 said:

To me, not a doctor, you failed 3 out of 5 celiac tests. You only have to fail one test to have a gastro want to do an endoscopy to confirm celiac.

EMA positive

DGP IGG 68 is very high

TTG IGA 28 high

Everybody tests different, that's why there are so many tests, to catch everyone. They don't indicate severity. The endoscopy results will tell you how much damage. Just ask them to send you a copy of all records for your files.

As said above, check out the Newbie 101 thread. There is a gluten free equivalent or recipe for most foods out there, so you just have to switch brands and be careful eating out.

With a positive on both the EMA and the tTg/IgA, that is a slam dunk for Celiac without the biopsy.  On the EMA testing, no other disease but Celiac will cause a positive.  They test the IgG antibodies in case you are IgA deficient, which you are not.  If you are IgA deficient, the IgA testing will never pop positive, even with full blown Celiac, so this is why they add the IgG antibody testing into the panel.