Weakly Positive Blood Test - What Should I Do?

[georgiagirl]

Hello everyone,

I have had extreme bloating for years and have been unable to figure out the cause.

In January, my gastroentonology gave me a blood test for celiacs.

There were some serious miscommunications between the doctor and the nurse. The nurse called me and said the blood test tested "positive" for celiacs. I was devastated.

She said the doctor didn't want me to change my diet till I saw him for a scheduled colonoscopy 8 weeks later. I spent the next 24 hours reading everything I could about celiacs disease.

Informed, I called the nurse back to see if the reason the doctor didn't want me to change my diet was because he was going to do a biopsy to test for celiacs at the same time as when he did my colonoscopy. "Exactly" she said.

So for the next 8 weeks, I forced myself to eat even more gluten to prepare for the biopsy. I didn't want to get a false negative. I realized I had subconsciously reduced a great deal of gluten in my diet already, so adding it back in for the biopsy was a big effort.

When the doctor did the colonoscopy (yesterday), he didn't do the biopsies for celiacs. Apparently he never was planning to and it was a big miscommunication between him and the nurse. When I asked him why he didn't do the biopsy, he said there was no need because I only tested "weakly positive" for celiacs. My blood test results were 8 and needed to be 10 or above to be considered celiacs.

I'm furious about the miscommunication.

I'm trying to figure out what to do next. Should I

1) immediately eliminate all gluten from my diet and assume I have early stage celiacs?; or

2) scale back on gluten, but don't eliminate it?; or

3) continue eating lots of gluten and get another blood test (and possibly a biopsy) after a few more weeks?; or

4) file a complaint against the doctor and nurse?

I welcome your advice! Anyone know a good celiac's expert in the Atlanta area that I can consult with?

Thanks in advance for your help.

[chrissy]

if 10 and above is considered celiac and you only tested at an 8, then that is NOT weakly positive, it is negative. the doc can't test for celiac when he does a colonoscopy. they do biopsies for celiac with an endoscopy. if you feel better when you are gluten free, just stay gluten free.

[Nancym]

It's up to you really. That's what this whole testing stuff is about, satisfying your need to know so you can keep yourself on the diet. Some people would probably go half-arsed if they didn't have a diagnosis (some do anyway). For me, trying the diet and having my issues resolve was enough to make me want to keep at it.

[georgiagirl]

if 10 and above is considered celiac and you only tested at an 8, then that is NOT weakly positive, it is negative. the doc can't test for celiac when he does a colonoscopy. they do biopsies for celiac with an endoscopy. if you feel better when you are gluten free, just stay gluten free.

Thanks Chrissy. The test results form says negative is 0-3, weakly positive is 4-10 and positive is greater than 10. I realize the biopsy for celiac is through an endoscopy, not a colonoscopy, but I though they would do both while I was under general anesthetic for the colonoscopy.

[georgiagirl]

It's up to you really. That's what this whole testing stuff is about, satisfying your need to know so you can keep yourself on the diet. Some people would probably go half-arsed if they didn't have a diagnosis (some do anyway). For me, trying the diet and having my issues resolve was enough to make me want to keep at it.

Thanks Nancy. I've read that if you give up gluten, it would take months of eating it before getting an accurate test. I can't decide whether to keep eating and get tested (to give me the willpower to stick with the diet), or just eliminate it entirely right now.

[Mtndog]

Just wanted to relate my experience. I tested weakly positive and had to wait 2 months for a GI appointment so I went gluten-free right away. Of course, my biopsy came back negative even after a short time (6 weeks) being gluten free and then doing a 10 day gluten intake. the doctor only took one biopsy and you need many more. Even then, they are not 100% accurate (neither is the blood test- a lot more false negatives).

I was FINALLY diagnosed via a gene test after being gluten-free over a year. If you feel better without gluten (positive dietary response) and have ANY kind of positive bloodwork, I would find a new GI and stay gluten-free. My guess is you DO have celiac and I'd hate to see anyone go through what I did.

[georgiagirl]

Just wanted to relate my experience. I tested weakly positive and had to wait 2 months for a GI appointment so I went gluten-free right away. Of course, my biopsy came back negative even after a short time (6 weeks) being gluten free and then doing a 10 day gluten intake. the doctor only took one biopsy and you need many more. Even then, they are not 100% accurate (neither is the blood test- a lot more false negatives).

I was FINALLY diagnosed via a gene test after being gluten-free over a year. If you feel better without gluten (positive dietary response) and have ANY kind of positive bloodwork, I would find a new GI and stay gluten-free. My guess is you DO have celiac and I'd hate to see anyone go through what I did.

Thanks Mtndog. How and where do I go to get a gene test? It sounds like that test is not impacted by whether you are eating gluten or have eliminated it.

[chrissy]

georgiagirl----that looks like you are closer to positive than you are to negative.(it was helpful to know the whole scale) you should be able to continue on the diet and then retest in a few months. if your levels have dropped, you most likely have celiac disease-----i assume the test you are talking about is the Ttg? i think that positive is positive whether it is weak or not. i'm really surprised your doc did not do an endoscopy with your test results!!

[nora-n]

Georgiagirl, I think you shoud keep eating gluten and get a proper biopsy. That is because you were eating gluten up to now, and if you waant to go back on gluten later you need to be on gluten for at least three months they say now. Get it done now.

I think the blood test results mean you are almost quite positive, and my daughter and I never even had any postitive blood test. They are really not that sensitive. Lots of people have negative blood tests and have positive biopsies.

If the blood tests are positive, it almost 100% is positive. (ttg)

I really think you should beg him to do the endoscopy, and take lots of samples, like 12-15 since early celiac is often patchy.

I do not think a complaint is the way to go, although they screwed up.

I am in europe, where we need a proper diagnosis, si my thinking is biased...

I read at celiac. com that you should be consuming at least 300 mg ogf gluten per kg a day, that would be about 21 grams for a normal person and that would be about 300 grams ogf bread here. I do not know about your local bread.

nora