Positive Ttg Negative Biopsy

[Hells Bells]

I had a positive Ttg blood test 45 normal<20 I then had to wait seven weeks for my biopsy which came back negative. I had been gluten free except for a 5 day gluten challenge before my blood test for 4 months , my GI doc said to stay gluten free until 3 days before my boipsy. Both times i ate the gluten I got severe stomach pain, felt like I was drugged and diarrhoea. I am 41 and always had tummy trouble.

I keep reading that the biopsy is the gold standard, so I think I am celaic but my blood screening was only the Ttg and the biopsy negative. I am concerned to get an officail diagnosis as it frightens me that f I get hospitalised or later in life put in an institution they will give me gluten.

Any thoughts?

[CarlaB]

Welcome to the board.

You should not have been gluten-free before your biopsy because it can give a false negative. The biopsy is the "gold standard"; however, it can only rule in celiac, it cannot rule it out because of the chance of a false negative.

I do not have an official diagnosis although I had elevated levels in a stool test. My biopsy had been negative as well, but I too had been gluten-free. My doc says that my dietary response is proof enough.

Be glad you don't have an official diagnosis, you will never have it be a pre-existing condition for insurance! As far as years later if you are in an old folks home, hospital, or anything, I'm sure no one will ask for proof if you claim you have celiac disease.

[psawyer]

Welcome to the forum!

There is no such thing as a negative biopsy, only one which is not positive.

Okay, that probably needs an explanation. A biopsy which finds damage to the villi conclusively proves celiac disease. But a biopsy which does not find damage does not mean that there is not some damage in a different place that was not sampled. It is also possible that the disease is in an early enough stage that detectable damage has not yet occurred. Or, in your case, three days of gluten was not enough to create detectable damage. Most experts say you need to eat gluten in quantity (equivalent to 3 slices of ordinary bread per day) for a number of WEEKS prior to a biopsy to get meaningful results.

I would say that the tTg is enough to give you your answer. That test is, as I understand it, very specific to celiac disease, and there is nothing ambiguous about a result more than twice the normal limit.

[Guest nini]

positive dietary response is the best indicator, if you responded well to the diet then reacted badly when reintroducing gluten then obviously gluten is a problem. It's irrelevent if it is Celiac or gluten intolerance because the treatment is identical, lifetime adherance to the gluten-free diet. As was stated before the biopsy can only confirm the dx, it can never ever completely rule it out if it's "negative"

[oceangirl]

  nini said:

positive dietary response is the best indicator, if you responded well to the diet then reacted badly when reintroducing gluten then obviously gluten is a problem. It's irrelevent if it is Celiac or gluten intolerance because the treatment is identical, lifetime adherance to the gluten-free diet. As was stated before the biopsy can only confirm the dx, it can never ever completely rule it out if it's "negative"

I had a similar story- 4 months gluten-free before biopsy and it was negative. But I had a positive tTg test before that. I did a VERY brief gluten challenge before the biopsy (three days) and almost went to the hospital the pain was so bad! Then I tested through Enterolab to find I have two genes for gluten intolerance. That's all I needed to know to be gluten-free. Call it what you will, my body doesn't do well with gluten and it seems yours doesn't either. I hope you stick with the diet- there are ups and downs but you should see lots of improvement. Good luck!

lisa

[Mayflowers]

I received my stool test kit and I'm sending it back tomorrow so I'll know once and for all. It also includes the free cows milk test which I'm interested in because I was allergic to milk as an infant but grew out of it.

I've been gluten free for about 3 weeks now and I noticed less bloating and much less indigestion. I was getting pressure, and gas pain in my sternum a few hours after eating wheat. I've also been unable to lose weight. I hope this makes a difference. I knew a guy who said he gave up wheat and lost 25 pounds just by doing that. I hope it works for me too.

I won't have a biopsy. I really don't want to be diagnosed as gluten intolerant. I won't be able to get insurance in the future. I just hope I can stay out of a nursing home as long as possible!

[Hells Bells]

Thanks every one for the help, I am beginning to realise what a big thing this is. I will never go back onto gluten as I was so ill on it. I think I was in denial a bit and finding it hard to say I am celiac.

I had recently met someone in a rest home in Canada who as they did not have an official diagnosis were finding it hard to get gluten free and was served unsuitable food. They gave her breaded fish, regular oats and just took the noodles out of the soup.

I think that there needs to be a whole lot more education out there for what gluten free realy means.

[Ursa Major]

You appear to have a VERY ignorant GI doctor. Of course your biopsy was negative, your villi had enough time to heal sufficiently for a negative biopsy. And villi won't get damaged enough in five days to produce enough damage for a positive biopsy.

It can take six months to a year on a high gluten diet for enough damage to reoccur to test positive.

Anyway, your high Ttg and getting severe stomach trouble when you eat gluten is enough evidence anyway. Just go back to being gluten-free and get well!

[eKatherine]

Considering how so many doctors consider the biopsy to be the gold standard, it's amazing they don't even bother to do it right so as to get reliable results.

[ekdumas19]

I agree. Once I finally went to a GI doc, he immediately wanted to run a biopsy once i told him i had been diagonsed only through a blood test. I told him I had been gluten free for 4 years-but we still did the biopsy and of course found nothing! Good thing I didnt listen to him and didnt start chowing down on bread-or else i probably would have been even sicker than I was before I went to see him! Definitly not going back to that guy ever again. Also, when i had the biopsy-and i came to after being under for awhile-the nurse asked me if i wanted a muffin! A muffin! I was so drained and def. needed something to eat after fasting for practically a whole day-good thing i thought ahead and brought my gluten free roll! I was living in Cape Cod at the time-and I am so glad I now in Boston, where they have a lot more specialist here who hopefully wouldnt ever try to give me a muffin! Yikes!

[jerseyangel]

  eKatherine said:

Considering how so many doctors consider the biopsy to be the gold standard, it's amazing they don't even bother to do it right so as to get reliable results.

I couldn't agree more with this!

[Hells Bells]

I think the problem with GI docs is a lot of them are primarily surgeons and arn't always as knowledgable about celiac as they should be. He was only able to give very limited dietry advice too, I got more info reading this site.

[Mayflowers]

Sorry to say but a lot of Medicine is a money making business. If they do a biopsy they make money. I had a cardiologist try to con me into having a cardiac catheterization because of a "shadow" on my stress test that turned out to be just that. A shadow from my breast making it look like my artery was clogged. I had another opinion and the other doc said it wasn't a clogged artery. I refused the test. It's very risky. You could bleed to death.