My Biopsy Results Were Negative - I Am Devastated

[bennyboy]

I have just received my biopsy results and they are negative. I am absolutely shellshocked. I have had symptoms of Celiac's for many years inluding bloating, discomfort, canker sores all over my throat, skin rashes, cold sores, dry eyes and blepharitis. My blood test was positive two months ago. I was actually looking forward to improvement in my health. Was told after biopsy that reasons for positive bloodwork were either a false postive or it means that I will have Celiac's in the future. I had another blood test ordered and it was also postive so that ruled out a false positive. I am so confused. I am scared that I am just going to be diagnosed with IBS and continue to struggle. Has anyone else recieved a negative biopsy but know that they have Celiac's??

[Kaycee]

Bennyboy, you have had two positive blood tests for coeliac. I had three positive blood test for coeliac over a period of 5 months. The biopsy I had was negative, but I consider myself coeliac based on the blood test and the improvement I have had on the diet.

Have you tried the diet, has it made any improvements to your health? You need to take this into consideration, if by being on the diet you have shown improvements it is quite an indicator that gluten could be a problem for you. Also, you want to stop eating gluten before you end up with gut damage. You don't really want to be eating gluten if it is going to destroy your villi in the long run.

You don't need a definitive positve result to go gluten free, you need to do it for your health.

Cathy

[Ursa Major]

Benny, the problem with biopsies is, that unless at least five to ten biopsies are taken, false negative results are very likely, because damage to your villi may be patchy and easily missed. A negative biopsy can never rule out celiac disease, it can only confirm it if it is positive.

You've have two positive blood tests, and you have symptoms. I would suggest you try the gluten-free diet. If it helps clear your symptoms, you can consider yourself to have celiac disease. Some doctors will diagnose celiac disease based on a combination of positive bloodwork and a positive diet response.

IBS is a junk diagnosis anyway. All it means is that your bowels are irritated. Obviously, that would mean that something is causing them to be irritated. A doctor declaring a symptom a diagnosis is just doing that out of pure laziness and ignorance, and not wanting to investigate further. Plus, of course, it makes the pharmaceutical companies happy, as IBS drugs make them money, while a gluten-free diet won't.

By the way, there is no such a thing as a false positive blood result when it comes to celiac disease. There are tons of false negatives, but a false positive is so rare that the possibility is close to zero.

[bennyboy]

Hi Thanks for your replies. Yes I did go gluten free for 7 weeks a few months back. It was the best 7 weeks I have had in about 10 years. All my symtpoms started subsiding and I had so much energy. My blepharitis started clearing up for the first time since I have had it. As soon as I started eaten gluten again my eyes started hurting. I told the doctor this and I could tell he was thinking "mind over matter". I will definitely go on a gluten free diet for the rest of my life regardless of what biopsies say. My bloodwork should be enough. Thanks guys I feel heaps more hopeful.

[irish daveyboy]

Hi Thanks for your replies. Yes I did go gluten free for 7 weeks a few months back. It was the best 7 weeks I have had in about 10 years. All my symtpoms started subsiding and I had so much energy. My blepharitis started clearing up for the first time since I have had it. As soon as I started eaten gluten again my eyes started hurting. I told the doctor this and I could tell he was thinking "mind over matter". I will definitely go on a gluten free diet for the rest of my life regardless of what biopsies say. My bloodwork should be enough. Thanks guys I feel heaps more hopeful.

Hi 'bennyboy',

Just a thought you need to be consuming GLUTEN for about 6 - 8 wks prior to biopsy,

otherwise you can get a negative result. Your Villi my not have been damaged that much

and if you had been gluten free prior to biopsy the villi could have repaired somewhat

making analysis difficult ?

[bennyboy]

Good point Irish DaveyBoy. I was gluten free for 7 weeks. Then my endoscopy date came up and I was told to eat gluten. So I was only eaten gluten for 2 and a half weeks before I took the test. And I was extremely strict in that 7 weeks I would be stunned if anything with gluten in it passed my lips in that time. All my doctors said this would be an OK length of time before test, but I guess maybe it wasn't. I think my intestines may have healed some.

[ravenwoodglass]

Good point Irish DaveyBoy. I was gluten free for 7 weeks. Then my endoscopy date came up and I was told to eat gluten. So I was only eaten gluten for 2 and a half weeks before I took the test. And I was extremely strict in that 7 weeks I would be stunned if anything with gluten in it passed my lips in that time. All my doctors said this would be an OK length of time before test, but I guess maybe it wasn't. I think my intestines may have healed some.

There is also the factor that there may have been changes such a scalloping and mucosal changes that the doctor did not consider to be a positive for celiac. You may want to get your hands on a coopy of the report. Also, as stated there are no false negatives on the blood tests, if you are producing the antibodies to show positive you are reacting. Many doctors want us to be close to dead before they diagnose, unfortunately that means that the autoimmune process will be wrecking havoc with our bodies for sometimes years causing lots of seemingly unrelated problems. I am relieved to hear you are going to go back to gluten-free, your bodies resopnse to the diet is really the best test.

[happygirl]

benny:

I fully agree with what others have posted.

Can you get a copy of your blood tests and post them? I'd be interested to see which of the celiac tests you were positive on. There is a set of five tests that your dr. should have run in the whole Celiac panel.

The latest research is that you need to be eating gluten for a number of months, at a relatively high level of gluten, for the biopsy to be accurate. Your dr. also needed to take multiple biopsies in multiple locations.

If the above two procedures weren't followed, then it is hard to say that it is accurate, in my opinion.

Many of us on here have had problems with a dx, but we tried the diet---and were given our lives back. You may also have non-Celiac gluten intolerance, which doesn't cause the traditional villi damage. You can still react just as severely though.

Bottom line is: the gluten-free diet worked for you, you have positive bloodwork---those two are enough to verify that you have some sort of problem with gluten. You don't need a doctor's prescription or permission to go gluten free. Stick around, and stick with the diet.

Best of luck,

Laura

[CarlaB]

I would consider positive blood work and a positive dietary response to be a diagnosis.

You don't need any prescriptions or doctor's permission to eat gluten-free, so go for it!

[TrillumHunter]

I was dx'ed with only blood work. Now I'm a little over a month gluten-free and feeling GREAT! I have very few symptoms left and they are mild. I came on here thinking I needed a positive biopsy as well but the great people here helped me understand why I didn't. Go gluten free and never look back!

[SunnyDyRain]

Hi Thanks for your replies. Yes I did go gluten free for 7 weeks a few months back. It was the best 7 weeks I have had in about 10 years. All my symtpoms started subsiding and I had so much energy. My blepharitis started clearing up for the first time since I have had it. As soon as I started eaten gluten again my eyes started hurting. I told the doctor this and I could tell he was thinking "mind over matter". I will definitely go on a gluten free diet for the rest of my life regardless of what biopsies say. My bloodwork should be enough. Thanks guys I feel heaps more hopeful.

I find it so funny that doctors tell us, "It's in your head!". In your case, if eating gluten-free was making you feel better, does it matter really if it's a real postive reaction in your intestines, or a mind thing? You feel better, does it matter how you got there?

I feel you have a daignosis. I was dx'd on blood test alone, didn't even want to do a biopsy, just wanted to start getting better ASAP. Your doctor can't do much, no perscriptions to help. Just eat on the diet.