Insight Into Test Results

[hawkgirl98]

I was diagnosed with Celiac via blood test about a month ago and went into today for an endoscopy. The notes when I left said it was "normal" but that a biopsy of my small intestine was done and my doctor will call me with those results sometime next week.

My blood test results were as follows:

Deamidated Gliadin Abs, IgA 51.3H (limit 0.0-10.0)

Deamidated Gliadin Abs, IgG 18.1H (limit 0.0-10.0)

T-Transglutaminase IgA >100H (limit 0-3)

T-Transglutaminase IgG 9H (limit 0-5)

Immunoglobin, Qn, Serum 198 mg/DL (limit 70-400)

What I take away from this is that my blood test results were pretty strongly indicating Celiac - is that a fair reading? Does it mean anything to say my endoscopy was "normal" without knowing how my biopsy results turn out?

THanks!

[ravenwoodglass]

Your blood tests results are strongly positive. You don't need to wait for the biopsy results to start the diet. It is still possible for you to have biopsy results that are positive or even negative. False negatives are not uncommon. Go ahead and start the diet with the blood results you had you need to be on the diet no matter what the results of the biopsy are. You may already have seen some relief of symptoms before you even go back for the results.

[Skylark]

Celiac is a fair reading! The new anti-deamidated gliadin peptide test is very good for diagnosing celiac, and that combined with your very high anti-tTG leaves no question.

Normal endoscopy means they saw no inflammation, ulcers, and other GI problems. That's good news. Doctors cannot see celiac disease with the endoscope. They will have done biopsies, but celiac damage can be patchy so there is a chance it can be missed and your biopsy comes back negative. You still need to go on a gluten-free diet, as I'm sure your doctors will tell you if they haven't already.

[hawkgirl98]

Thanks. I got the blood test results a month ago and went gluten-free right away. Hard to say if I noticed a difference because I wasn't having serious or even daily symptoms. Celiac runs in my family (dad, aunt and cousin although none have been biopsy-confirmed) so I've been on the lookout for it and after experiencing a variety of minor issues the last couple months (bloating and other digestive issues, fatigue, migraines, mood swings, mild depression...), I asked my regular doctor to test me as part of my regular annual exam. I had been tested at a free screening at the U of C Celiac Center in 2008 and that was negative.

Because of the family history, I originally wasn't going to bother with the endoscopy, but everything I have read seemed to strongly recommend it. When I found a doctor who could get me in right away, that sealed it (some docs I contacted wouldn't be able to get me in until September). He did have me go back to eating gluten between scheduling the endoscopy (last Friday) and the test today, but now that it's done, I am definitely back to gluten-free.

[hawkgirl98]

So to my and my doctor's surprise, my biopsy came back totally normal. Any ideas why this could be??? He is going to have me come in for the genetic test now and see what that shows.

For now I am going to stay gluten free, although because I did not have bad or consistent symptoms, it's hard to tell if I am really feeling all that better. Plus, I was off for 2 weeks post-blood test, then back on for a week before the biopsy and now on again for a week.

It's stupid, but after the blood test, I told all my friends and family I had Celiac, everyone knows now and has been very good about trying to help me adjust, I'd feel pretty stupid if it turns out to be a false alarm and I am not really gluten-intolerant after all. My blood test seemed so strongly positive, though, I just don't get how my biopsy could be so normal!

[GlutenFreeManna]

So to my and my doctor's surprise, my biopsy came back totally normal. Any ideas why this could be??? He is going to have me come in for the genetic test now and see what that shows.

For now I am going to stay gluten free, although because I did not have bad or consistent symptoms, it's hard to tell if I am really feeling all that better. Plus, I was off for 2 weeks post-blood test, then back on for a week before the biopsy and now on again for a week.

It's stupid, but after the blood test, I told all my friends and family I had Celiac, everyone knows now and has been very good about trying to help me adjust, I'd feel pretty stupid if it turns out to be a false alarm and I am not really gluten-intolerant after all. My blood test seemed so strongly positive, though, I just don't get how my biopsy could be so normal!

As someone else mentioned above, they can't see the damage done by celiac with the endoscopy. They are just guessing at where to take tissue samples. They may have taken tissue samples of the healthy part of you intestines. OR since you had been of gluten for a month the damage may have healed. There may have not been very much damage to your intestines to begin with. If you caught the celiac fairly soon after your symptoms developed (and it sounds like you did) then you would not have very much damage to the intestine yet. Most people with celiacs suffer for years before they find someone to do tests. You are lucky that you have a family history of it and knew to get tested at the first sign. The blood tests are often false negatives, but very rarely false positive. You were diagnosed with a strongly positive blood test. There's no need to do anymore testing. Really there was no need to do an endoscopy at all. You have celiac disease.

I know it's hard. I went through a denial period myself. But if you keep eating gluten you will do more damage to your intestines leading to malnutriton and possibly cancer on down the road.

[ravenwoodglass]

So to my and my doctor's surprise, my biopsy came back totally normal. Any ideas why this could be??? He is going to have me come in for the genetic test now and see what that shows.

For now I am going to stay gluten free, although because I did not have bad or consistent symptoms, it's hard to tell if I am really feeling all that better. Plus, I was off for 2 weeks post-blood test, then back on for a week before the biopsy and now on again for a week.

It's stupid, but after the blood test, I told all my friends and family I had Celiac, everyone knows now and has been very good about trying to help me adjust, I'd feel pretty stupid if it turns out to be a false alarm and I am not really gluten-intolerant after all. My blood test seemed so strongly positive, though, I just don't get how my biopsy could be so normal!

False negatives with both blood and biopsy are not uncommon at all. You have 22 ft of small intestine and the damage can be patchy and be missed. I would not bother with the gene testing as that could confuse things even more. Commonly only 2 of the 9 celiac associated genes are tested for and if you don't carry one of those 2 genes you will be told you don't have celiac.

Your blood tests were positive, accept the diagnosis and stay on the diet.