Negative Biopsy

[jrose]

I just received the results of my biopsy today. The Doctor said it was negative. I had previousl had 2 bloodtests that showed borderline positive for celiac. I have had a lot of the symptoms ever since I can remember- and I am 52!. I am extremely disapointed, I thought this was the answer to a lot of my health problems. My elderly mother has the symptoms for years and also has Osteoporos.

At the time of the bloodtesting I didnt know what celiac was, and I wasnt told I should be eating a high gluton diet preceding the tests. In fact I might have been on a low carb diet at the time. Maybe that was why it was only borderline positive?

Does any one think I should go Gluten free anyway. Maybe they picked the wrong spot for the biopsy?

I hope someone can help me.

Thanks

[Lisa]

Yes, biopsies can be hot or miss.

Should you go gluten free? If it feels good, do it. Try it for a month and see if you feel better.

Ooops, where are my manners.....Welcome, there is some great information here.

[ravenwoodglass]

Welcome to the boards. Yes you should do the diet strictly for a while to see if it helps. The low carb diet you have been on could have resulted in a low positive, although some of us will show negative even at the end stages and eating a full gluten diet on blood testing. Biopsies are hit and miss and not all doctors recognize the changes that are a part of celiac before full villi destruction. The truest test of whether the diet is needed is strict adherence for at least a couple of months. You have come to a great place for information and support. Please feel free to post any query you need to and read as much as you can here, gluten free doesn't just mean your food and there is a bit to learn at first but if the diet helps it is well worth the trouble.

[dollamasgetceliac?]

I had a negative test first I was very ill I had lost a lot of weight in a very short time, I was so ill I could hardly eat . The nutrisionist told me to go on a wheat free diet , because I had so much abdominal pain, I only realised later that they had tested me for Celiac again and the reason it was negative is that I was not eating wheat. I started eating wheat, it was painful , it felt as if someone turned a blender on inside my stomach., After a week or so and believe me I was eating very little, and I asked the doctor to retest , and yup there it was.

Positive

[gilliannicola]

I recently had a negative biopsy, yet a positive bloodtest. The whole thing has been such a mess. I have so many of the symptoms, I'm so positive I have celiacs. I have spoken to friends of mine with the condition as well and they too are convinced.

I'm so tired of messing around with this doctor - tired of trying different diets, excluding and including exessive amounts of certain foods. I think I'm going to have a second opinion, and especially try to eliminate gluten out of my diet for a few months.

Glad to hear that others have had negative biopsies too. Not that I like to have celiacs, but I would really like to pin down the reason for my pain.

So glad to have found these boards!

Gillian

[Lukalovescats]

I would definitely go off the gluten. Over a year 1/2 ago I tested negative both through the biopsy and the blood test. Tried other diets, even going Vegan for awhile. Ended up having my gallbladder out and then I tested positive for gluten intolerance through a stool test. Now when I get just the slightest bit of gluten I start itching all over and a few days later the abdominal pain kicks in with migrains and the big D for several days. I've thought about going back on it to be retested for celiac, but with these symptoms I'm positive that I don't want to do it. Now if I can stop accidently glutening myself, I'd be good to go.

[Lisa]

I recently had a negative biopsy, yet a positive bloodtest. The whole thing has been such a mess. I have so many of the symptoms, I'm so positive I have celiacs. I have spoken to friends of mine with the condition as well and they too are convinced.

I'm so tired of messing around with this doctor - tired of trying different diets, excluding and including exessive amounts of certain foods. I think I'm going to have a second opinion, and especially try to eliminate gluten out of my diet for a few months.

Glad to hear that others have had negative biopsies too. Not that I like to have celiacs, but I would really like to pin down the reason for my pain.

So glad to have found these boards!

Gillian

Hi Gillian,

Welcome to the Board! Since you had a positive blood test, you DO have Celiac. As you may know, a biopsy can be hit or miss. But, the blood test does not have any false positives, only false negatives.

So welcome to the club!

[jrose]

I would definitely go off the gluten. Over a year 1/2 ago I tested negative both through the biopsy and the blood test. Tried other diets, even going Vegan for awhile. Ended up having my gallbladder out and then I tested positive for gluten intolerance through a stool test. Now when I get just the slightest bit of gluten I start itching all over and a few days later the abdominal pain kicks in with migrains and the big D for several days. I've thought about going back on it to be retested for celiac, but with these symptoms I'm positive that I don't want to do it. Now if I can stop accidently glutening myself, I'd be good to go.

Thank you everyone for your advice. I am going to start the gluten-free diet next weekend. It is my birthday and I want to wait till after then. In a few days I will be getting an MRI of my right kidney. I have been having pain in the kidney area for 5 months. I have a long history of kidney stones ( 10 times). I read that Kidney stones might be caused by Celiac.

The more I research the more I find my many Illness' could be caused by celiac .

Thanks

Jim

[kayavara]

I had negative blood tests and a negative biopsy in April of this year....although "villious blunting and atrophy" were reported.That one still confuses me. My doctor told me to go on the gluten-free diet anyway as he was sure there was a gluten/wheat problem. I was totally confused until I spent hours here reading posts. I got on the diet as soon as I left the doctor's office and I haven't been off since....almost 2 monts now. I feel much better and have decided to stay gluten free,regardless of any tests results. The positive dietary response was the dx this time....not the costly tests I had to pay for earlier.

So yes....I would say go gluten free and see what happens.

Good Luck and have a great Birthday!

[Tim-n-VA]

Hi Gillian,

Welcome to the Board! Since you had a positive blood test, you DO have Celiac. As you may know, a biopsy can be hit or miss. But, the blood test does not have any false positives, only false negatives.

So welcome to the club!

This is the internet so you can get conflicting information and surprise, not all of it is correct.

Any medical test can have both false positives and false negatives. The the last paragraph on the link below directly contradicts the statement I've quoted.

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