Question About Tests

[kellerg2]

I was recently told that my biopsy showed signs of celiacs in its early stages and the dr wanted to do a blood test to confirm. My blood test came back negative. I have already decided to go gluten free to see if my body reacts. I read something today though that the biopsy and blood test are really only reliable on a fully atrophied (sp?) villi.

If I do have Celiacs I can pinpoint when it came on and that was less than 3 months ago after a virus I had. Does anyone out there know if there is any truth to the fact that in its earliest stages it is very possible for negative test results? Also, what would be seen on the biopsy that would lead him to order further tests?

I have a follow up on March 1 and plan on asking my Dr these questions but would love to hear some other opinions.

thanks in advance.

[divamomma]

It is possible to have a negative blood test and a positive biopsy. Biopsy trumps blood in this case. You have celiac disease.

[Marlie]

There are a number of forum members with positive biopsies and negative blood work. Did your doctor take biopsies? There are also multiple blood tests for celiac.

[ravenwoodglass]

It is possible to have celiac, and even to have it for years, and still have negative tests. Since your biopsies showed that you are in the early stages, and your doctor was smart enough to know that, you need to be strictly gluten free. Kudos to your doctor for not telling you to keep eating gluten and come back in a year to see if your villi are fully destroyed. Celiac is the only disease I know of that some doctors want us to be in the latest possible stages before they will diagnose. Welcome to the board and ask any questions you need to.

[kellerg2]

Well my doctor actually wanted me to get a CT Scan but I told him I wanted to go gluten free and see if that did the trick. I didn't really see a need to get shot up with radiation for I'm not sure what. I'm 34 yrs old, very healthy, and all my blood work and endoscopy were normal....aside from the start of what he thought could be celiacs.

At any rate I'm 4 days in now and can feel a difference already. Still have stomach cramps but to a much lesser degree already.

[SaraKat]

Why would he want you to have a CT scan? I didn't think that showed celiac? I had a CT scan before I got diagnosed for unexplained pain I was having and it came back normal- I had the endoscopy about 4 months later that was pretty advanced celiac.

I am glad the diet is making you feel better!

[kellerg2]

Why would he want you to have a CT scan? I didn't think that showed celiac? I had a CT scan before I got diagnosed for unexplained pain I was having and it came back normal- I had the endoscopy about 4 months later that was pretty advanced celiac.

I am glad the diet is making you feel better!

The CT scan would be to rule out anything else....which like I said Im still not sure what the anything else could be since all my blood work is normal. I figure I give the diet a try and see what happens. I just don't get why after the endoscopy he ordered blood work specifically for celiacs. Obviously something in that biopsy pointed towards Celiacs even though it was deemed "inconclusive"

[SaraKat]

Oh, that makes sense! That was kind of like me, but in reverse! I kept having this really awful pain in my left ribcage. No one ever tested me for celiac in the beginning, but I did get a CT scan. Finally a few months later I was tested for celiac and it was positive!

What are your main symptoms?

[kellerg2]

Oh, that makes sense! That was kind of like me, but in reverse! I kept having this really awful pain in my left ribcage. No one ever tested me for celiac in the beginning, but I did get a CT scan. Finally a few months later I was tested for celiac and it was positive!

What are your main symptoms?

Bloated after eating half a plate of food sometimes, cramps across stomach region, pain in left rib cage!!!! that's it....very mild based on what I am hearing from others on this board..THANK GOD! They actually thought it was an ulcer which was what led to the endoscopy. Primary Care physician thought Gastritis or IBS.

[kellerg2]

APOLOGIZE IN ADVANCE FOR ALL MY QUESTIONS!!! Also is it normal to always feel hungry when you start going gluten free? I feel like i have switched from constantly feeling full and bloated to always feeling hungry.

[mushroom]

Celiac in its early stages presents with inflammation in the duodenum/small intestine, maybe something odd with eosinophils - there are several changes that while not specifically diagnostic of celiac are indicative that that process is starting. That's probably what your results showed. (By the way, it is always a good idea to get copies of your test results for your own records, for this reason and also so you can present them to any other doctor you see.) So even though the blood tests did not confirm, this wise man thought that if you tried the diet and improved his hunch would probably be correct. Not enough doctors listen to their hunches and instincts Glad you are starting to feel better.

Yes, it is normal to suddenly start feeling hungry. So many report feeling absolutely ravenous. Celiac is a disease of malabsorption so there are nutrients your body is just crying out for that it has not been getting, so it is saying, MORE, MORE, MORE!!! Might be a good idea to ask the doc to check for nutrient deficiencies like B12, D, iron, etc., that way you could supplement and not gain a lot of weight (unless you want to!). ( Also, without all that bloating, there is more room in the stomach to fit food and that will make you hungrier.)

[kellerg2]

Celiac in its early stages presents with inflammation in the duodenum/small intestine, maybe something odd with eosinophils - there are several changes that while not specifically diagnostic of celiac are indicative that that process is starting. That's probably what your results showed. (By the way, it is always a good idea to get copies of your test results for your own records, for this reason and also so you can present them to any other doctor you see.) So even though the blood tests did not confirm, this wise man thought that if you tried the diet and improved his hunch would probably be correct. Not enough doctors listen to their hunches and instincts Glad you are starting to feel better.

Yes, it is normal to suddenly start feeling hungry. So many report feeling absolutely ravenous. Celiac is a disease of malabsorption so there are nutrients your body is just crying out for that it has not been getting, so it is saying, MORE, MORE, MORE!!! Might be a good idea to ask the doc to check for nutrient deficiencies like B12, D, iron, etc., that way you could supplement and not gain a lot of weight (unless you want to!). ( Also, without all that bloating, there is more room in the stomach to fit food and that will make you hungrier.)

Wow thanks so much to everyone for the advice and info. I cannot tell you how much better I feel since I have joined this forum.