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Here's What My Dr. Says About Celiac Panel Tests

orangez28cam

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orangez28cam Rookie
orangez28cam
Posted

I had a full celiac panel done in October. Only two of the many tests were positive.

Deamidated Gliadin ABS, IGA: 55 (moderate to strong positive is greater than 30)

T-Transglutaminase (TTG) IGG: 6 (weak positive is 6-9)

Finally got in to see a GI doc yesterday. I have tons of symptoms and have for many years (bloating, diarrhea, gall bladder issues, hair loss, fatigue, and the list goes on). My doctor scheduled me for an endoscopy which is great, but then said he thinks I only have a 50% chance of having celiac. ??? I asked him why I would be making antibodies then, and he said that antibodies are kind of funny, that test is not all that specific, and some people just make them for no real reason at all. He said that my blood tests showed only a weak positive result. If I don't have celiac, he wants to do a colonoscopy to check for microscopic colitis, and if not that, I probably just have IBS. I thought IBS was a bogus diagnosis that I have already been given several times over the years. So, here are my questions

1. Are antibody tests really not that specific or accurate?

2. Would microscopic colitis cause all of the symptoms I am experiencing?

This guy is a very well respected GI doc in a specialty clinic. He seems to know his stuff, but then all this about antibodies and IBS has me a little rattled. My endoscopy isn't scheduled until Dec. 20th. Until then I plan on consuming lots of gluten so that they will hopefully find something if there is anything to find.

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Roda Rising Star
Roda
Posted

From my understanding there are a lot of false negatives with these not false postitives. When you have the endoscopy make sure he takes at least 6 samples from different areas in the first part of the small bowel. Damage can be pachy. My GI I see knows alot about celiac but I did get conflicting information from him too. When I went for my first followup and requested my blood tests be repeated because I wanted to see if they went down any, I was told they would always be elevated. I knew better and low and behold my TTG was normal after 6 months. IMHO I would go gluten free after you endoscopy regardless of the results. Good Luck!!

ravenwoodglass Mentor
ravenwoodglass
Posted

Your tests results are positive. The Deamidated Gliadin ABS is the best and most specific test for celiac that is avaiable. Yours is positive as is the TTG. Your GI may not be up on the current research and testing methods for celiac. No matter what the results of your biopsy you need to go gluten free as soon as the biopsy is done, if you chose to have the biopsy done. The Deamidated Gliadin is diagnostic in itself. If you are choosing to have the biopsy wait until the day that is done and as soon as you are home from the procedure you can start the diet.

WheatChef Apprentice
WheatChef
Posted

Your test is pretty strongly positive. The deamidated test is a lot more accurate than the TTG test. That being said the odds of a false positive result for either test is very low, like single digit probability low for each one. Factor in that you hit a positive on 2 tests and you're probably looking at a probability lower than 1% of it being a false positive. After results like that a biopsy is more of a formality for the doctor than it is for you although since celiac disease doesn't always occur alone it might not be terrible to have someone scoping out your guts anyways. As the others said, with those results you need to go gluten free immediately after the endoscopy. IMO, if your doctor comes back with negative results from the biopsy and tells you that you shouldn't consider the gluten free diet then you may wish to consider finding a better doctor.

MacieMay Explorer
MacieMay
Posted

Putting the test results aside... Why would GI make you wait for the colonscopy? How old are you? You might as well just have both procedures at the same time. Then you get all the answers at once (hopefully). If you have had GI symptoms for years, then you could have damage to your colon. You don't know what is going on in there. My step-father died of colon cancer at 59 last August. He would still be here, if he had a colonscopy. You have to be your own advocate and push Dr's to do testing that you think is right for YOU! Good luck!!

orangez28cam Rookie
orangez28cam
Posted
  • Author

MacieMay,I am 27. My doctor said that he doesn't do more than one test at a time. It's one or the other for now. Sounds crazy, but I just hope he finds some damage. I just want to get some answers and feel better.

ravenwoodglass Mentor
ravenwoodglass
Posted

MacieMay,I am 27. My doctor said that he doesn't do more than one test at a time. It's one or the other for now. Sounds crazy, but I just hope he finds some damage. I just want to get some answers and feel better.

There is no reason not to do both scopes at once other than by doing them seperately the doctor gets paid more. Also you already have the answer with the highly positive and very specific blood test the doctor has already run.

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mushroom Proficient
mushroom
Posted

Not to mention more money for the hospital or day surgery center where it is done. Does he have a financial interest there??

Judy3 Contributor
Judy3
Posted

I had endoscope and colonoscopy done on the same day the end of October. There is absolutely no reason for not doing both as long as you're there and 'under'. I would suggest you get a second opinion in a different clinic or organization. Sounds like what the last person said. Two dates of admission equal full pay on both procedures. I work in the insurance industry and I know that if they do them on the same day there may be a discount for the second procedure depending on their contract but my doctor/hospital takes it in stride.. they care more about the patients than they do the almighty dollar.

My 2 cents :huh:

Skylark Collaborator
Skylark
Posted

I had a full celiac panel done in October. Only two of the many tests were positive.

Deamidated Gliadin ABS, IGA: 55 (moderate to strong positive is greater than 30)

This test is so specific for celiac (95-98% depending on the study) that there are publications suggesting that endoscopy might not be necessary in people who show the antibody and respond to the gluten-free diet. I'm not sure why your doctor said otherwise.

nora-n Rookie
nora-n
Posted

I find these test results very interesting . Up until now they trusted the ttg IgA test very very much, but it is negative in your case, and the deamidated gliadin IgA is strongly positive. Interesting.

Skylark Collaborator
Skylark
Posted

I find these test results very interesting . Up until now they trusted the ttg IgA test very very much, but it is negative in your case, and the deamidated gliadin IgA is strongly positive. Interesting.

I believe the deamidated gliadin IgA is supposed to be more sensitive. We've seen others who had negative panels and went back to have DGP done and it was positive.

MacieMay Explorer
MacieMay
Posted

MacieMay,I am 27. My doctor said that he doesn't do more than one test at a time. It's one or the other for now. Sounds crazy, but I just hope he finds some damage. I just want to get some answers and feel better.

Only 27...I could see why your Dr. wouldn't want to do both procedures then. I hope you get your answers too. Good luck!!

Roda Rising Star
Roda
Posted

Only 27...I could see why your Dr. wouldn't want to do both procedures then. I hope you get your answers too. Good luck!!

My doctor wanted to do both the EGD and colonoscopy in the same day and I was only 35. I decided I didn't want both done all at once and had the colonoscopy 2 months later.

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