False Positive/negative Diagnoses?

[Deanna Wang]

Hi,

I recently had a weak positive blood test result (anti-gliadine IgG=26, IgA=33) but my biopsy was negative. I know you can get false negative biopsy results, but I would like to know if it's possible to get false positive blood test results. After my first set of blood tests my specialist ordered another round of tests to examine my vitamin levels. Everything was fine except my Vit D which was half the lower limit of normal. So on the basis of my vit D results, my anti-gliadine results and my symptoms (which seems to read like a coeliac symptoms checklists) he's concluded that I am most likely coeliac and that I should stick to a coeliac diet for a year or two to see how things go.

I'm happy to do this, and I haven't found it too hard to stick to at home (after the year-long elimination diet I did, a gluten-free diet seems fine by comparison). But I'm finding it really difficult to impose my dietary needs on others when I'm in reality unsure of whether I'm really coeliac. The biggest problem is that I've recently moved from Australia to France, and the people here are much less accomodating and understanding about unusual diets (the French can be lovely people, but they're so very conservative about food!!!).

The thing is that I'n really unsure about being coeliac because my medical history is weird for a coeliac. I was terribly ill for years up until my elimination diet (fatigue, allergies, asthma, headaches, stomach aches, lactose intolerance etc..) but things got a lot better after eliminating almost everything known to cause food intolerance problems. The disconcerting thing is that wheat was one of the few things that actually remained in my diet at this time. My current specialist has no idea why I might have got better whilst keeping wheat in my diet, except that I was also on a heavy dose of vitamin tablets to offset the vitamin deficiency of the elimination diet (but if I am really coeliac, then vitamin tablets wouldn't necessarily help bc I would still have problems absorbing the nutrients?!). Additionally, although the elimination diet worked (ie. I got better on it) the challenge tests afterwards didn't. That is, although eliminating everything seemed to help, I didn't really react to any of the challenge tests. So we never did work out what food/s might be problematic.

Anyway, I got a lot better after the elimination diet, never worked out what the actual problem was, and now don't seem to be that ill. So I'm not even sure if I'll know from being on a gluten-free diet whether I'm coeliac or not. At the same time as the elimination diet, I was also tested for various allergies (milk, soy, seafood, nuts.. all the usual suspects). As is typical for me, all the results came back negative but the overall result testing my for being "an allergic person" went through the roof. Basically the summary is there is something wrong, all the tests and my symptoms confirm this but I never get any useful results.

After all this time, I'd just love to have one normal positive diagnosis. Even if it means I'm on a strict diet for the rest of my life, if I could just know what I need to avoid to stay well, I'd be happy.

So if there's anyone out there who's had any experience of continuing inconclusive results, please let me know. Is it possible to have positive blood test and not be coeliac?? and if I am coeliac, why did I seemingly get better when I eliminated almost everything EXCEPT wheat???!!

[mouse]

You can have a false negative test, but not a false positive. You could have improved because dairy for one reacts the same as wheat to the the small intestine. But, I respectfully suggest that you also go on the Celiac diet as you have had a positive test result for the disease. And you will probably notice that you keep improving. It takes some time for the small intestine to heal, depending on the damage. You can also have a false biopsy as it depends on where they took the samples from and how many they took. As far as your food allergies, you can have a blood test that will tell you what you are allergic to and at what level each one is. Good luck and welcome to the forum.

[Guest nini]

there are no false positives in the blood tests. Your blood test was positive therefore at the very least you are gluten intolerant and need to stay off gluten for life. The biopsy could have very easily missed areas of damage and/or the damage wasn't significant enough for the lab to declare it positive. Many will not acknowledge the early stages of the disease and will only call it positive if they find full blown villous atrophy, which is just silly, because it's like waiting until you really ill to begin treatment. What ever happened to preventative medicine? Anyway, you are positive for Celiac, so welcome to the club.

I agree you probably improved because of eliminating dairy. Many celiacs are lactose intolerant until they begin to heal. You may find that after some time you can add dairy back into your diet.

[Deanna Wang]

Thanks for your replies. I guess sometimes it's easier to see someone else's situation in simplicity than your own! I'm so confused about all the tests and diets that I've done over the last 10 years that my head goes around in circles whenever I think about it.

I have actually started a gluten-free diet and am rapidly establishing that this is NOT EASY in France (where I live - easy for a tourist but not for a resident it seems..). But it is possible and I plan on sticking to it. Actually it's been easier for me with both of you saying that there are no false positives. I don't find it difficult at home to stick to a gluten free diet, but when I'm out I was finding it difficult to insist on gluten-free food when I had doubts at the back of my mind...

However as for your suggestions that my improvement was due to milk, I reintroduced the same lactose free milk that I was on before my elimination diet very early during the testing and never had any problems. So I think it's unlikely that my improvement came from eliminating dairy.

Oh well.. I guess bodies are mysteries really..