Do I Really Need To Get A Biopsy?

[jbaker]

After many years of feeling terrible and not getting any substantial guesses from doctors I read up on Celiac and asked to be tested. First there was one blood test, Doc said it "looked like I had a possible sensitivity to gluten." So I went gluten free for a couple weeks, I was feeling really improved but finding the food very costly. So I wanted a more certain answer, again asking the Doc to do further tests. Four more blood tests came back "positive." So now they want to do a biopsy...is there really a need for this? The gluten I had to ingest for the second round of blood tests made me terribly ill. I feel like I am fairly positive I have Celiac. Can anyone tell me the benefit of getting the biopsy. It feels a bit silly to have a surgery when all the other signs are fairly definite.

Thanks for your help.

Oh, and has anyone else seen anxiety attacks lessen on a gluten free diet?

[RoseTapper]

I can share with you what Dr. Alessio Fasano, a leading celiac expert, presented at the celiac conference at Stanford last month. He said that there are five tests for celiac: 1) positive blood tests, 2) positive gene test, 3) symptoms were present before going gluten free, 4) the symptoms resolved upon eating a gluten-free diet, and 5) biopsy. He explained that if a patient is positive for four of the five tests, that is adequate. Because biopsies are notoriously imprecise due to inexperience of either/both the surgeon and the pathologist, Dr. Fasano suggests that the biopsy should be the test that can be skipped. He and several colleagues will be publishing an article to this effect within the next month or so.

Unless your insurance company requires a definite diagnosis, I personally see no reason for having a biopsy. If your symptoms are alleviated by a gluten-free diet, that's all you really need to know. There are many people who would disagree with me on this matter, but this is the stance I have taken after attending numerous conferences on celiac and gluten sensitivity.

[GlutenFreeManna]

I can't think of any advantage to getting a biospy with multiple positive blood tests. Maybe the experts here will chime in a reason why, though.

As far as the anxiety attacks, I'm not completely sure, but I might have been having anxiety attacks. They may have been asthma attacks or anxiety attacks. Sometimes I would go into a public place like a store and just start having difficulty breathing. I've had asthma since I was a child, but for about a year it was worse than it had ever been before. I was having frequent sinus infections and seasonal allergies, so I thought maybe that was making my asthma worse, but sometimes my inhaler did not help me. I would feel panicky because I couldn't breath. I would have to leave my groceries or whatever I was shopping for and retreat to my car and sit for a while before I felt better. A lot of times i couldn't go back and finish shopping. The strange thing is that it never happened when I was at home. Only when I was in a crowded public place. And once when I was in a car with my husband--we were driving out in the country and got lost (he was driving). For some reason I freaked out and couldn't breath. I haven't had one of those episodes since Christmas 2009 (Started gluten-free/elimination diet in Jan 2010). I also have not had any sinus infections and much lighter allergies this year. So I do think the gluten free diet has helped.

[bluebonnet]

first, i have definitely noticed a difference in anxiety levels ... for the better of course!

second, if you do the biopsy you will need to eat gluten again (which is what i did and it was awful and i feel like i reversed progress) BUT having the endoscopy revealed a couple other problems i was unaware of. if you feel like other issues are worth checking into and you have a great doctor than its certainly an option to think about. many people here had the biopsy and came back negative but they really do have celiac ... since you've been off gluten it could give you a false negative. you just have to decide how you will handle those results should they come up negative but to me it sounds like you've got your answer regarding celiac.

good luck!

[jbaker]

Thanks to all for your posts, very helpful. I think the biopsy is a no-go for me right now. Now I am curious and should probably search but GLUTEN has made me lazy, can someone explain the difference between gluten free diet and gluten/elimination diet?

Thanks again, it's great to be with people who don't just think I decided to hate bread!

Jane

[1138]

I had a biopsy done last month. It was the easiest thing. A lot of people seem to be concerned with getting one. It's not really surgery. I don't find it to be invasive. But that's just me. The main reason was I had symptoms for what I thought was an ulcer all these years. So naturally I decided to get a gastroscopy done plus my brother was diagnosed with celiac months before. So I wanted to knock out both. Turns out it wasn't an ulcer at all. Just celiac. The biopsy took 30 minutes. 15 minutes for the scope to look around and 15 minutes for me to wake up. My throat wasn't scratchy or sore at all. I felt perfect. I'm glad I had the scope. Just looking at my lower intestine he could tell right off the bat there was damage consistant with celiac. The biopsy confirmed celiac. I felt better being able to see the amount of damage done to my villi (photo) so I had a better idea of what I was dealing with. He then followed it with a blood test where my tissue transglutaminase was off the charts.

Also your grocery bill can be tax deductible. Open Original Shared Link

[bluebonnet]

Thanks to all for your posts, very helpful. I think the biopsy is a no-go for me right now. Now I am curious and should probably search but GLUTEN has made me lazy, can someone explain the difference between gluten free diet and gluten/elimination diet?

Thanks again, it's great to be with people who don't just think I decided to hate bread!

Jane

i don't believe there is a difference between the two. if i'm wrong, someone let me know please and thank you.

to me its just a different way to say eliminate every spec of gluten from your diet. make sure to remember that cross contamination could be a source as well. it doesn't have to be a whole bite of something with gluten.

[bluebonnet]

I had a biopsy done last month. It was the easiest thing. A lot of people seem to be concerned with getting one. It's not really surgery. I don't find it to be invasive. But that's just me. The main reason was I had symptoms for what I thought was an ulcer all these years. So naturally I decided to get a gastroscopy done plus my brother was diagnosed with celiac months before. So I wanted to knock out both. Turns out it wasn't an ulcer at all. Just celiac. The biopsy took 30 minutes. 15 minutes for the scope to look around and 15 minutes for me to wake up. My throat wasn't scratchy or sore at all. I felt perfect. I'm glad I had the scope. Just looking at my lower intestine he could tell right off the bat there was damage consistant with celiac. The biopsy confirmed celiac. I felt better being able to see the amount of damage done to my villi (photo) so I had a better idea of what I was dealing with. He then followed it with a blood test where my tissue transglutaminase was off the charts.

Also your grocery bill can be tax deductible. Open Original Shared Link

wow, had no clue that some things can be tax deductible! thanks for the link.

[Kelly&Mom]

After my daughter's positive biopsy, our pediatrician/gastro recommended the rest of the family be tested but said that since Kelly's biopsy was positive, a positive blood test for the rest of us was sufficient, no biopsy needed. After my positive blood test, I went to see an adult gastro. and after going through my family history, he recommended one so that he would have a baseline for how things looked in there. My mom died of a celiac related cancer (she wasn't ever diagnosed but had gastro issues all her life)so I agreed. As an adult, he said I didn't need to go back to eating gluten before the biopsy because there would still be damage there, I even waited 2 mos. until school let out for the summer so as to not have to use sick days. I've had several surgeries and this biopsy was really nothing like that at all other than the IV. Very quick, painless, no side effects other than sleepy for a day.

If you don't have a family history of cancer, etc. you are probably fine w/out the biopsy.

[Fey]

I can't think of any advantage to getting a biospy with multiple positive blood tests. Maybe the experts here will chime in a reason why, though.

As far as the anxiety attacks, I'm not completely sure, but I might have been having anxiety attacks. They may have been asthma attacks or anxiety attacks. Sometimes I would go into a public place like a store and just start having difficulty breathing. I've had asthma since I was a child, but for about a year it was worse than it had ever been before. I was having frequent sinus infections and seasonal allergies, so I thought maybe that was making my asthma worse, but sometimes my inhaler did not help me. I would feel panicky because I couldn't breath. I would have to leave my groceries or whatever I was shopping for and retreat to my car and sit for a while before I felt better. A lot of times i couldn't go back and finish shopping. The strange thing is that it never happened when I was at home. Only when I was in a crowded public place. And once when I was in a car with my husband--we were driving out in the country and got lost (he was driving). For some reason I freaked out and couldn't breath. I haven't had one of those episodes since Christmas 2009 (Started gluten-free/elimination diet in Jan 2010). I also have not had any sinus infections and much lighter allergies this year. So I do think the gluten free diet has helped.

Those sound a lot like my anxiety attacks. When they were really bad, I couldn't go into stores without getting the racing heart/difficulty breathing. I also had them in my car, which is why I stopped driving for almost 2 years. Then I began having them as a passenger, out of the blue.

My anxiety has dropped about 80% since starting the gluten-free diet 2 weeks ago. The fact my anti-anxiety meds are not gluten-free isn't helping either, but I'm getting a gluten-free brand in 2 days

[Skylark]

As Kelly&Mom mentioned, with all the positive blood tests you want to be sure there are no precancerous changes to the gastric mucosa. If you had anti-tTG and anti-endomysial antibodies, and you're unable to eat gluten there is really no question that you're either celiac or headed in that direction. You could be in an intermediate state where you have positive blood tests but not much mucosal damage but you have already decided you need to be on a celiac diet.

Talk to your doctor about how sick gluten makes you and ask if he can see what he needs on biopsy without you consuming gluten.

Yes, I had anxiety attacks lessen on a gluten-free diet and they return if I consume gluten. For complete mental health I personally need a pretty high-powered vitamin/micronutrient/mineral supplement as well as staying gluten-free.

A classic allergy elimination diet is when you eat a very limited selection of foods for a few weeks (lamb, rice, and pears for example) and then reintroduce foods one at a time.

[Midwest]

If you've been off gluten for a few months, what does a blood test measure and how effective is it at that point?

[ravenwoodglass]

If you've been off gluten for a few months, what does a blood test measure and how effective is it at that point?

The blood test measures the antibodies that are produced from the gluten reaction. If you have been off gluten for months you need to do a gluten challenge for aoubt 3 months for any chance of an accurate result. Even with a challenge or on a full gluten diet there is a 20% chance of a false negative.

[GlutenFreeManna]

Thanks to all for your posts, very helpful. I think the biopsy is a no-go for me right now. Now I am curious and should probably search but GLUTEN has made me lazy, can someone explain the difference between gluten free diet and gluten/elimination diet?

Thanks again, it's great to be with people who don't just think I decided to hate bread!

Jane

Sorry I just noticed this question. An elimination diet is where you eat only a few whole foods that you are pretty sure are not bothering you. Then you add new foods in one at a time to see how you react. I had blood sugar issues so I did my elimination diet by cutting out all grains, all sugar except for small amts of honey, anything that converts easily to sugar (corn and potatoes), all fruits except for berries, all dairy, yeast, all forms of soy and of course anything with gluten. I ate organic chicken, bison, lamb and a few veggies (peas, carrots, onions, garlic) and used only olive oil for one month. Then I added things in one food at a time to see how I felt.

[Midwest]

...If you have been off gluten for months you need to do a gluten challenge for aboubt 3 months for any chance of an accurate result...

You mean eat food with gluten in it for 3 months? No way in heck that's gonna happen!