Blood Test Positive For Celiac, Do I Need Biopsy?

[krysmaralie]

Hi Everyone,

I have recently been tested positive for Celiac disease in a blood test. My GP said that I need to go for a biopsy 'to confirm'. The problem is that I am currently travelling and it will be months before I get to do a Biopsy. I want to go gluten-free now, but am concerned that I should wait (and continue to feel terrible) to have this biopsy. Is it possible to eat 'normal' for a few weeks leading up to the biopsy, in order to get a true reading?

All of the literature I have read say not to go on a gluten free diet until you have been tested - is the blood test sufficient?

Thanks very much for your thoughts.

[Lisa]

No confirmation necessary. You positive blood test is your diagnosis. I biopsy can indicate the level of damage or look for other issues.

Depending on the level of damage to your intestines it can influence your biopsy if you are on a gluten free diet. And, of course, depending on the length of time that you are on the gluten free diet.

Many people choose not to further test and began the diet immediately. It is your choice. There is no further testing that will be needed to "confirm". You have that confirmation.

[aikiducky]

Just to give another point of view - I agree that for yourself, a positive blood test should be enough to go gluten free. But for "official" purposes it might not always be enough. For example, if you ever wanted to take part in a study, they usually look for biopsy-diagnosed people so you would be excluded. Or if you change doctors they might want to do the biopsy later to "prove" to themselves you have celiac for sure. Remember, once you go gluten free the idea is that you will stay gluten free for the rest of your life! Decisions you make now will possibly have an impact years from now. The one thing I worry myself about is - what if for some reason I'm incapacitated, my medical records don't show celiac, and I'm in a hospital or home of some sort and they keep feeding me gluten?

I wouldn't go gluten free now and then back on gluten before the biopsy in any case. One, that might result in a false negative biopsy. Two, many people find that after being gluten free they react more strongly to gluten than before that, so you might make yourself very sick that way. So I'd either go gluten free now and skip the biopsy, or have the biopsy but with the understanding that it is just looking for other potential problems. Or stay on gluten for a while longer, have the biopsy and then go gluten free immediately afterwards.

Actually, the very best case scenario I think would be that you do whatever it takes to get the biopsy done ASAP. But it's your decision and you should weight all the pros and cons carefully for yourself.

Pauliina

[jayhawkmom]

I have a bit of a different perspective.

My blood tests were questionable and inconclusive. I decided to have the biopsy. The biopsy was "negative" but I didn't know that before I went gluten free. By the time I got the biopsy results, I'd already been gluten free for a few weeks (it took forever!) and was feeling better than I'd felt in years.

However, with "inconclusive" blood work and a negative biopsy, I figured I'd be totally fine to eat gluten. Yet, after being gluten-free for a while, once I started eating it again.... I was sick(er) all over again.

So, I'm on a gluten free diet...and will remain on one. Gluten makes sick. No amount of testing or the results will change that fact.

If you already know that gluten makes you sick, and have the positive blood tests to confirm it, the biopsy doesn't seem all that necessary, in my opinion. If it were to come back negative, would you begin to consume gluten again? If you think you will.... I'd skip it.

(FWIW - my "allergist" said my results are inconclusive. My GI said that they were "conclusive enough" to warrant a biopsy, and that since my bt's were elevated, even without "confirmation" from the biopsy, I obviously have a gluten "problem" and should not consume.)

[njbeachbum]

Just to give you insight based on what I just went through recently, I was informed of my blood test results just after Thanksgiving in 11/07. My doctor scheduled an endoscopy for 12/21 to confirm the findings, but told me to go ahead and get started with the gluten free diet. A lot of people on here will tell you NOT to go gluten free before the biopsy... and if you have not been symptomatic for very long and maybe do not have significant damage, then this could impact your biopsy results. I was misdiagnosed and symptomatic for many years, and my doctor indicated that it could take up to 6 months to a year on a gluten free diet for the damage to heal in the small intestine. Therefore, after only a few weeks gluten free (and I'd even say up to 2 months or so) my biopsy would still show damage and flattening of the villi.

It's really your call based on your particular situation. But as Lisa has stated above... you have your diagnosis in the blood test. There's really no need to wait. Get started with the diet and start feeling better soon.

Best of luck to you, and stay positive!!

[happygirl]

Changes to the villi, seen by biopsy, can occur within one week of starting the gluten free diet.

If you chose to have the endo/biopsy, remain gluten free until the procedure, in efforts to have the results as accurate as possible.

If you chose not to have the biopsy, you can start the diet.

Which blood tests were positive? There are a few, and some are more specific/sensitive than others.

[krysmaralie]

Thanks so much for everyone's help. My doctor actually did tell me to go gluten-free until I was able to get a biopsy. He said it could take 'months' to get an appointment, so I took that term literally. I will look into a little further, thanks again.

[osusanna]

I tested positive with the blood work through my rheumatologist who said I didn't need an endoscopy/biopsy (my symptoms were not the typical symptoms) and have been gluten-free for two years feeling pretty darn good too! I went last week to a GI doc for a bleeding problem probably unrelated and he said "you can't be sure you have celiac unless you have the biopsy" he wanted me to go back on gluten for a questionable length of time, unsupervised, and have the test. There is no way to be sure of the correct time to be on gluten for a positive result. I am in a horrible dilema trying to decide what is the right thing: poison myself for a chance at for sure diagnosis or live with the doubts of my present and future doctors.

If you can get the biopsy in a reasonable amount of time without being too miserable it will hopefully save you heartache later on.

[Gemini]

I tested positive with the blood work through my rheumatologist who said I didn't need an endoscopy/biopsy (my symptoms were not the typical symptoms) and have been gluten-free for two years feeling pretty darn good too! I went last week to a GI doc for a bleeding problem probably unrelated and he said "you can't be sure you have celiac unless you have the biopsy" he wanted me to go back on gluten for a questionable length of time, unsupervised, and have the test. There is no way to be sure of the correct time to be on gluten for a positive result. I am in a horrible dilema trying to decide what is the right thing: poison myself for a chance at for sure diagnosis or live with the doubts of my present and future doctors.

If you can get the biopsy in a reasonable amount of time without being too miserable it will hopefully save you heartache later on.

Your rheumatologist had it right from the start....if you tested positive via blood work for celiac disease then an endoscopy is not necessary to confirm Celiac. The endoscopy may be warranted if there are other problems, like symptoms of bleeding, that need to be checked out but the GI doctor is dead wrong that you need an endo to "confirm" celiac disease. He is just trying to protect his interests....medicine is a business, after all, and all those fancy endoscopy wings need to be paid for. To ask a person to become very ill for an unspecified period of time to prove what the blood work has already told you is grounds for malpractice, in my opinion. If you also had a positive dietary response, along with the blood work, you have celiac disease.

Don't worry about what any future doctors think about blood work diagnosis. I made a remark to my primary care that it's not my problem that the medical community refuses to look at the whole picture when diagnosing a disease, and relys on one test only. After she saw how high my blood work was and all the autoimmune diseases I have as a result of a prolonged diagnosis, she does not doubt my diagnosis. I like to think I have taught her to be more flexible when it comes to helping people get a proper diagnosis for celiac disease, instead of telling them they don't have celiac disease because of a lack of an endoscopy picture. If they all suffered for years like I did, they would change their tune.