positive blood test - do endoscopy?

[leontin 0]

Hi! New here and very confused about what to do. 

Long story short: I have had big health issues and a lot of different symptoms in the last year or two. Slowly getting a little better lately, but still nervous about rectal bleeding occuring sometimes I recently saw doctor who tested for all kinds. celiac disease test and inflammatory markers came back positive. (Gliadin DGP Ab IgG   -  58.5 u/ml). 

I have been 99% gluten free since this summer, more or less just a desperat effort to feel better (also cut back on other things. didn´t ever think I had celiac disease). I was told to eat gluten before blood test and had a couple of pieces of bread. I was litterally floored by it and I´m still not recovered. Doctor now wants to move forward with biopsi so get proper proof for diagnosis. My problem is that I just don´t know how make myself that sick for weeks and weeks. My fear is I eat gluten for all this time and the biopsi is still inconclusive. 

I honestly don´t know what to do. IS there a risk for false positive DGP IGG tests? If yes, what other than celiac disease could it be? I ask my doctor this but not getting an answer. 

 

Thanks so much for any input or feedback! 

 

[Ennis_TX 815]

Sounds like celiac and your blood test came back positive. Is your doctor willing to diagnose you with celiac in writing with just this? The endoscope with biopsy is the gold standard you need just 2 weeks of gluten for the test and not much. Just a cracker or half a slice of bread a day, perhaps before bed so you can sleep off the huge hits, but the offical diagnosis is great to have on record.

I will also go head and welcome you to the forums and give you a few helpful links like our newbie 101 thread and some links to ordering foods and where to get them. We suggest a whole food diet for the first few months on the gluten-free diet and removing dairy, and oats also from your diet to jump start the healing process. You will also need to talk to a dietician and see about testing for deficiencies, a lot of the issues that come with celiac can be contributed to nutrient issues form having damaged intestines that do not allow your body to absorb them properly. This is different for each person and gets better as you heal. You might also find you have some odd intolerance to other foods that could be temporary or go away as you heal. These are all the common issues we get with this disease. Feel free to ask questions and talk opening here.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

 

[ironictruth 57]

https://www.ncbi.nlm.nih.gov/labs/articles/28161854/

 

 yes there is a risk of false positive With that test. There also is no set-in-stone amount of time for the gluten challenge there was one study that suggested only about fifty or sixty percent of folks became positive on the biopsy after a 12 week gluten challenge.

 

 One thing you can do is get the genetic test if your insurance will cover it.

[TexasJen 42]

Here's an explanation from the University of Chicago's Celiac center as to why Anti-Gliadin antibodies can cause a false positive.

http://www.cureceliacdisease.org/faq/is-the-anti-gliadin-antibodies-aga-test-reliable-for-diagnosing-celiac-disease/

Did they do the other celiac tests and an IgA level? If not, you might want to follow up with those blood tests now.

The thing is that getting an accurate diagnosis from the beginning is really important. A biopsy is the gold standard to do this. The celiac version of a gluten free diet is substantially more difficult that the non-celiac gluten sensitivity version of a gluten-free diet. A celiac diet can be socially isolating and expensive. It is worth the effort  to get an accurate diagnosis now.....

Good luck!

[ironictruth 57]

15 minutes ago, TexasJen said:

Here's an explanation from the University of Chicago's Celiac center as to why Anti-Gliadin antibodies can cause a false 

cureceliacdisease.org/faq/is-the-anti-gliadin-antibodies-aga-test-reliable-for-diagnosing-celiac-disease/

Did they do the other celiac tests and an IgA level? If not, you might want to follow up with those blood tests now.

The thing is that getting an accurate diagnosis from the beginning is really important. A biopsy is the gold standard to do this. The celiac version of a gluten free diet is substantially more difficult that the non-celiac gluten sensitivity version of a gluten-free diet. A celiac diet can be socially isolating and expensive. It is worth the effort  to get an accurate diagnosis now.....

Good luck!

Just a FYI, gliadin or AGA, was replaced by DGP/deamidated gliadin roughly 10 years ago. It was Considered a far more accurate test than the AGA referenced by Chicago. 

 Even more confusing is that  companies such as  Inova offer both tests. Inova uses the same name but the deamidated version they put II after it. So gliadin (AGA) and gliadin lite II (newer version of DGP). 

 youR DGP IGG is fairly moderately high.  in a previous email I had with somebody from Chicago they had referenced that the DGP IGG was probably more reliable than the IGA.  they also were unable or unwilling to tell me why this was the case.  unfortunately, since the test is still relatively young there is still a lot of research being done.

Texasjen is correct.  having Celiac is very isolating.  I'm undergoing fUrther testing myself to try to rule it out  because of how isolating It can be and the reality for me is that I may not have the disease. My brother is a very sensitive celiac and never eats out. 

 But if you are getting that sick you really may want to look into a Celiac specialist.  There may be other versions of tests that they can run And see how many of yOurs come back positive in addition to the gene test.  see if your positive is an isolated number or not. Do you have a family history as well? 

 if you are able to find out some of the above you may be able to undertake the gluten-free diet Without doing a biopsy if it's making you that sick.  look at it this way, You either get the biopsy done now and get the gluten challenge done and over with now, or you spend the rest of your life gluten free and you're okay with it, or you go gluten free and then down the line you wonder and just end up doing the gluTen challenge you originally were going to do anyway.

[leontin 0]

Thank you all for your thoughtful responses!

My DGP IgA  was  0.2 u/mL. Another doctor tested my immunoglobulins (for other resaon) and they didn´t seem alarming. I´m not even sure they are relevant to celiac or not. And yes, I do have a brother who has celiac. 

IgA    203 mg/dL              normal 87 - 474 mg/dL    
IgG    1370 mg/dL          normal 681 - 1648 mg/dL    
IgM    169 mg/dL            normal 48 - 312 mg/dL

I have been a litte surprised my doctor hasn´t suggested any other celiac tests. Considering all the information you are sharing it might be worth asking him for some more tests before a full on gluten challenge and biopsi. The facts of the study shared was very interesting and definitely calls for more tests before going gluten free the rest of my life. I have a multiallergic child and know too well how isolating it is and how much work special diets require. 

It´s a lot of to process at this stage. Sorry if I´m missing any questions or comments. They´re all much appreciated!