One Positive On Celiac Panel, Some Questions

[Ikgbrd]

Hi, I just wanted to ask a few questions and get some feedback from others who are familiar with Celiac and gluten intolerance. After suffering for two years from some pretty nasty digestive problems, I finally convinced my doctor to run a celiac panel blood test on me. The Deamidated Gliadin IgA came back as a 38, while everything else came back as a negative. From what I've read, the IgA is a pretty solid indicator for Celiac, even if nothing else comes back. Can anyone verify this for me, or could it mean something else?

 

Because of my positive result for the IgA, my doctor set me up with a GI specialist in a couple of weeks so that I could get some more conclusive testing done. Though she also told me to stay away from gluten for the time being. I've also read that going off gluten before you have conclusive tests can mean a false negative when an endoscopy is done. I questioned my family doctor about this, and they insisted I should stay gluten free for the time being. I tried to ask the office of the GI doctor, though they refused to answer questions until they'd seen me. What are you're opinions about this?

 

For the last week I've kept to a strict gluten free diet, and I'm already feeling a lot better in a lot of ways. I'm torn though about whether it's more important to get a solid diagnosis, or if I should be satisfied just feeling healthier. Any comments or opinions are appreciated. I'm still pretty new to this whole idea, and none of my doctors seem to be giving me very much solid advice or seem to know much about it at all.

[kareng]

_{You are right.  You should not stop eating gluten if you want to be diagnosed for Celiac.}

 

 

_{Open Original Shared Link}

[Ikgbrd]

But should I be more worried about a proper diagnosis, or just feeling better day to day?

[nvsmom]

If you need a proper diagnosis for some reason (for accommodations or even if it is just to make it mentally easier for you to stick to the gluten-free diet for the rest of your life) then you should continue eating gluten immediately and continue until testing is done.  If you just want to feel better now and get started on the gluten-free diet, then you can do so. It's a personal decision.

 

If you think you will want more testing in the future, I would get it over and done with now. Many people react even more strongly to gluten after being gluten-free for a time, and then they are unable to complete a gluten challenge and get accurately tested.

 

The DGP IgA is pretty specific to celiac. You have a 93-96% chance your positive test was from celiac disease. See p. 12 of this report: Open Original Shared Link

 

Good luck.

[Celiacmama83]

I had the same test come back positive and everything else was normal. My doctor also had me go gluten-free and said a biopsy wasn't necessary and she was sure that I have Celiac. I am torn though. Sometimes I have no symptoms at all and other days I feel terrible. I'm sure this is normal in the first few months. I really wish she would have done the biopsy for piece of mind, but I'm to afraid to eat gluten to get a positive biopsy :/ I'm also afraid it might be something else, but all of my other blood panels are coming up normal. The only thing that they noticed was that I am anemic and low on potassium. Do you suffer from that to??

[GottaSki]

Hi Celiacmama83

 

Low Iron along with other minerals and vitamins is very common in Celiac Disease.  With celiac disease we don't absorb nutrients properly thus are deficient -- I was anemic my entire life...other vits and mins were just low until the later years pre diagnosis.

 

Hang in there -- time will help you become comfortable with your diagnosis without biopsy.  Should symptoms continue beyond the first six months to a year...then it may be time to take a look -- even without introducing gluten.

 

edited to add:

 

How long have you been gluten-free?  Although the antibodies drop quickly upon removal of gluten -- the endoscopy can still show damage for quite some time -- it is better to have it done before removal, but after is not without merit.

[Celiacmama83]

Hi Celiacmama83

 

Low Iron along with other minerals and vitamins is very common in Celiac Disease.  With celiac disease we don't absorb nutrients properly thus are deficient -- I was anemic my entire life...other vits and mins were just low until the later years pre diagnosis.

 

Hang in there -- time will help you become comfortable with your diagnosis without biopsy.  Should symptoms continue beyond the first six months to a year...then it may be time to take a look -- even without introducing gluten.

 

edited to add:

 

How long have you been gluten-free?  Although the antibodies drop quickly upon removal of gluten -- the endoscopy can still show damage for quite some time -- it is better to have it done before removal, but after is not without merit.

I have been gluten-free for three months. I recently had my blood checked because of a petechial rash on my legs and they said my iron and potassium are still low, even being on a gluten-free diet. I thought that would go away :/ I also contacted the Celiac Center of Chicago to see if I could get a care package since my doctor said I definitely have Celiac. They asked for my blood work, I sent it and they came back saying that my test doesn't  support a Celiac diagnosis. My doctor said that the test that came back positive is very good. I'm just so confused and tired of all of this. I wish they would have done the biopsy because I'm still having tummy troubles, but not as severe as before. That is why I was thinking it might be something else. The ER doc said that I might have something mimicking Celiac?? I don't know what else to do. I'm going to continue the diet and hope everything will subside. I just keep having all this other stuff pop up now and its terrifying. Thanks for listening to me!!!

[GottaSki]

I have been gluten-free for three months. I recently had my blood checked because of a petechial rash on my legs and they said my iron and potassium are still low, even being on a gluten-free diet. I thought that would go away :/ I also contacted the Celiac Center of Chicago to see if I could get a care package since my doctor said I definitely have Celiac. They asked for my blood work, I sent it and they came back saying that my test doesn't  support a Celiac diagnosis. My doctor said that the test that came back positive is very good. I'm just so confused and tired of all of this. I wish they would have done the biopsy because I'm still having tummy troubles, but not as severe as before. That is why I was thinking it might be something else. The ER doc said that I might have something mimicking Celiac?? I don't know what else to do. I'm going to continue the diet and hope everything will subside. I just keep having all this other stuff pop up now and its terrifying. Thanks for listening to me!!!

 

Happy to listen -- here is hoping you continue to improve quickly -- but just so you know -- not all of us improve quickly -- my celiac antibody levels all improved during the first six months gluten-free but it took nearly two years for my vitamins and minerals to all improve to normal levels -- again --- I am on the slow end of the curve...here's hoping you are on the better end of the curve