Screened Positive On 1/3 Antibody Tests

[Deb O (UK)]

I've just been screened for celiac by blood test and was told that I scored positive on 1 antibody - the test looked for 3 antibodies and I was told by doctor that scoring positive on 2 gives a dx of celiac. He has advised me to follow a gluten-free diet and has referred me to a dietician (still waiting).

If I've not got celiac disease what does this mean? Does it mean I'm gluten intolerant or is this the same as celiac disease? I have had digestive discomfort for around 20 years and this is why I went to see doctor. However, since reading up about celiac I am amazed at how many other symptoms I have particularly lethargy/ tiredness/ irritability/ prone to low mood / mood swings / aching muscles / joint pain / tingling in fingers / foggy head and probs with concentration.

I feel like I'm in a 'no-mans land' - I know I shouldn't be eating gluten, but am waiting to see dietician.

On a positive note, I'm quite excited about going guten-free as I'm inspired by reading about how many people feel so much better after eliminating gluten

I would welcome any feedback

[eKatherine]

It could be that you're gluten intolerant, but it hasn't progressed to the serious illness, or celiac stage. It doesn't really matter, just as long as you keep your diet under control your health will improve and it shouldn't bother you.

[Chelle15]

I've just been screened for celiac by blood test and was told that I scored positive on 1 antibody - the test looked for 3 antibodies and I was told by doctor that scoring positive on 2 gives a dx of celiac. He has advised me to follow a gluten-free diet and has referred me to a dietician (still waiting).

If I've not got celiac disease what does this mean? Does it mean I'm gluten intolerant or is this the same as celiac disease? I have had digestive discomfort for around 20 years and this is why I went to see doctor. However, since reading up about celiac I am amazed at how many other symptoms I have particularly lethargy/ tiredness/ irritability/ prone to low mood / mood swings / aching muscles / joint pain / tingling in fingers / foggy head and probs with concentration.

I feel like I'm in a 'no-mans land' - I know I shouldn't be eating gluten, but am waiting to see dietician.

On a positive note, I'm quite excited about going guten-free as I'm inspired by reading about how many people feel so much better after eliminating gluten

I would welcome any feedback

How frustrating! Why can they never tell you what the results mean! I came back with 2 positive markers for Celiac. But still had no idea if that meant I had it or not. It seems that no one wants to commit to telling you what is wrong. I would call the doctor and ask directly, what does this mean!

[floridanative]

Oh my the stupidity of doctors never ends does it.......I had a full Celiac panel run, which was six test/antibodies in all. I had ONE postive result for Celiac. After insisting on having the biopsy (had anemia which came out of nowhere, and some bloating) my results showed severely damaged villi. Boy was that doc's face red when he called to tell me I had Celiac. Of course I couldn't see his face but it was red, trust me. His uncomfortableness eating all that crow was palpable over the phone. I'm sorry to tell you but you probably have Celiac disease or you're gluten intolerant, which you know yourself already. Either way a gluten free diet is the only known treatment. Good luck getting answers.

[jabberwife]

hang in there. I'm in the same boat. I scored negative on blood tests and Enterolab (but I did notice that although both times, my IgA were in the normal range, the blood test showed a 1 unit read, and the Enterolab showed a 6, a year and a half later. Does that mean anything??) I did come up with 2 DQ1 genes (not the major ones for Celiac, but still predisposed) and my sister, brother, and father all have it. So....after visiting my doc, he's told me to go BACK on the diet (I did for almost a month before with some weird results, one really bad result to a bagel, but then when I went off...some IBS troubles but not dramatic problems) for 90 days. So I will. I wonder if a colonoscopy will help...but I can do a diet without having to go through that, so it sounds preferable to me!

[Deb O (UK)]

Hi there

I don't know what DQ1 genes are, there was no mention of this by the doctor (UK) and no suggestion of further tests.

I'm just hanging about now waiting to see the dietician - I suppose I could go gluten-free on my own before seeing the dietician, but I'm kinda anxious about it, I've started to buy in some gluten-free stuff but I'm scared that when I start there's no going back and I'm not comfident that I know what to do yet.

Thanks to all of you who replied to my message!