Positive Blood Test, Negative Biopsy, Damage Noted

[gingergrly 0]

I have experienced constipation for several months that is unchanged by medications, and I used to experience a lot of stomach pain years ago which was never diagnosed. My gastroenterologist tested me for several things, and my blood test for celiac tested "off the chart" positive. I then went of a gluten-free diet for about a week before getting the biopsy. The doctor said that there was intestinal damage and the villi looked smooth...but then the biopsy came back negative. They said that it was latent celiac.

My question is, would it really be latent with such high blood results for celiac with visual noted damage with the endoscopy? Could the biopsy have been negative from being gluten-free for a week?

I have been gluten free for several weeks, but my digestion hasn't improved. If my intestines are really that damaged, would it take a long time for them to heal?

Thanks

[love2travel 396]

I have experienced constipation for several months that is unchanged by medications, and I used to experience a lot of stomach pain years ago which was never diagnosed. My gastroenterologist tested me for several things, and my blood test for celiac tested "off the chart" positive. I then went of a gluten-free diet for about a week before getting the biopsy. The doctor said that there was intestinal damage and the villi looked smooth...but then the biopsy came back negative. They said that it was latent celiac.

My question is, would it really be latent with such high blood results for celiac with visual noted damage with the endoscopy? Could the biopsy have been negative from being gluten-free for a week?

I have been gluten free for several weeks, but my digestion hasn't improved. If my intestines are really that damaged, would it take a long time for them to heal?

Thanks

Hi, Ginger! Glad you posted today.

There are many issues with your situation:

1. False positives are so rare that they are almost non-existent. There is a high false negative rate, though. My bloodwork was "off the charts" as well, so I also had biopsies which were positive.

2. You need to be eating gluten at least three months (and lots of it) prior to the biopsies. Perhaps that one week off gluten did it for you.

3. At least 8-11 biopsies are needed; most doctors only take 3. They could easily miss it.

4. It is an individual disease; each person has different healing times. I was told it can take 2-5 years to get my gut up to the level of someone without celiac. However, it is fairly common to begin feeling better tummy wise after a few weeks - some people feel dramatically better. As you do not, perhaps check for any hidden gluten in products (i.e. soy sauce, vitamins, meds, toothpaste) or cross contamination in your house. Plus once off gluten many people experience other food intolerances that make them sick such as soy, dairy and so on.

There are tons of experienced people on this board who will have lots of great advice to give you.

Hang in there! It is a tricky thing to figure out but it can be done.