Positive Bloods - Negative Biopsy

[CeliaCupCake]

I

[starrytrekchic]

Stick with the diet!

A positive blood test indicates celiac. Your immune system reaction may not be severe enough to have caused intestinal damage yet, or you might be a slow developer. Additionally, the person who took the biopsy might not have biopsied the right spots (especially if your intestinal damage is intermittent) or may not have taken enough samples.

[rosetapper23]

One of the leading experts on celiac disease is Dr. Alessio Fasano, and he has stated in presentations (and in an article to be published shortly) that if your bloodwork is positive and your symptoms are alleviated by a gluten-free diet, NO biopsy is needed. He said that the damage can be beyond the length of the scope, the surgeon may not have biopsied a section with damage, or that the person reading the results may not be well versed in identifying villi destruction. Therefore, he believes that biopsies are oftentimes a waste of both money and time. You should definitely stick with the diet for the rest of your life.

[CeliaCupCake]

Thank you very much, ladies. I appreciate your quick and helpful responses. I

[Skylark]

We are starting to understand that developing celiac takes time. Studies that follow people with celiac symptoms and TTG find most who continue eating gluten go on to develop villous damage. If you've only had symptoms for 18 months, you may still be in the process of developing the full-blown autoimmunity, or it could be patchy and the biopsy just hit healthy tissue. Staying gluten-free is an excellent idea and you might follow up with your doctor about whether he will diagnose you with the combination of response to the diet and antibodies. I understand you get some reimbursement for food in the UK?

On a test with a range of 0-6.9, 21 is definitely positive. The magnitude is not important, as the test results do not correlate well with the amount of damage (as you're seeing). The TTG test ranges are in arbitrary units and are calculated differently from lab to lab so you can't compare your result to one from a different diagnostic lab.

[sb2178]

Improvement of symptoms varies. You'll probably have good days mixed in with less good days and the occasional I just screwed up day for a while. If you aren't really noticing a general improvement on some level within a month, it might be time to do some additional exploration of potential complicating factors. And definitely get a grip on what you need to do in terms of label reading and contamination sooner rather than later. Nutrient status is one thing your GP/GI should check out too. Iron, b-12, etc.

[GFinDC]

There are false negatives a lot more often than there are false positives.

[mushroom]

Sometimes I wish that there was no darned test for celiac disease - that the doctor would just look at the symptoms and say, I believe you have celiac disease" (NOT IBS);; '"I think you should try the gluten free diet." More people would be helped this way (if the doctors recognized the symptoms of celiac disease ) than by the darned testing and biopsies which just confuse the heck out of people with their inaccuracies and false negatives, because they are inconclusive. and leave people wandering around saying "I don't have a diagnosis, what should I do?" when all they need to do is stop eating gluten

[CeliaCupCake]

Thanks so much everyone for your very helpful replies.

Staying gluten-free is an excellent idea and you might follow up with your doctor about whether he will diagnose you with the combination of response to the diet and antibodies. I understand you get some reimbursement for food in the UK?

Yes, diagnosed celiacs do, but not NCGI, which is very unfair considering they have the same additional expense of gluten-free dieting. So yes, I will certainly push for a celiac diagnosis not only for this reason but especially for the fact that, sadly, you get taken more seriously with a celiac diagnosis.

On a test with a range of 0-6.9, 21 is definitely positive. The magnitude is not important, as the test results do not correlate well with the amount of damage (as you're seeing). The TTG test ranges are in arbitrary units and are calculated differently from lab to lab so you can't compare your result to one from a different diagnostic lab.

It

[SuzanneT]

I'm also in the UK and was told that the range was 0.1-7.9 and I was 40.7. I've not had the biopsy yet though. (how long did you have to wait for one? I've been waiting for 2 and a half months so far!)

Maybe it will take a little longer for you to see results on the Gluten free diet. It sounds like it is definitely worth persevering for a while.

[CeliaCupCake]

Hello Suzanne,

40

[CeliaCupCake]

I hope you don

[mushroom]

I would think it more likely that your biopsy was a false negative than that your blood was a false positive.... False positive occur very rarely, and from what I've read usually because you have something else instead (which probably would have show up on the biopsy and the other tests you have had, although not necessarily, I suppose.)

Do try to be more patient with this healing process. You have been sick and are trying to get well. Even flu can sometimes take longer than three weeks to recover. The recovery pattern from gluten intolerance is typically uneven, up and down, and not a straight line. Many posters report feeling great for a couple of weeks, and then feeling lousy again. You just have to see it through. Are you avoiding lactose products as well?, as this is a typical reason for not responding well to gluten free. If you have damage not found by the endoscopy, you will have a decreased ability to process lactose.

[CeliaCupCake]

Thank you for your advice, Mushroom. It

[mushroom]

No, I'm sorry, I did not word that clearly enough - there can be damage to the small intestine that has not been found by biopsy, and this can cause difficulty with lactose.

[CeliaCupCake]

You explained it well. It was me just being dim. I see what you mean now. Thanks for the clarification.