Positive Blood Test, Negative Biopsy

[jlynn]

Hi everyone,

I was recently told that I had celiac and to start a gluten free diet. I was gluten free for two weeks, and then had a biopsy which was negative for Celiac Sprue. Could the two weeks of gluten free food make my biopsy negative? The doc said he thinks I don't have celiac but to stay gluten free for 6 months and then add wheat. Does anyone have a take on this? Thanks.

[Jestgar]

That sounds like excellent advice. That will give you time to analyze a gluten-free diet and know if you feel better. And a challenge in 6 months will probably make it very clear if gluten is causing you problems.

[jhun]

same story with me but i was gluten-free for one month before biopsy. biopsy turned out negative for celiac but found gastritis and peptic duodenitis caused by h pylori, felt really good after the 1 week antibiotic course. doctor ordered me back on gluten but i decided to stay gluten-free even though i know that i can eat gluten without any problem i mean symptoms, its the long term damage im afraid of.

[jlynn]

same story with me but i was gluten-free for one month before biopsy. biopsy turned out negative for celiac but found gastritis and peptic duodenitis caused by h pylori, felt really good after the 1 week antibiotic course. doctor ordered me back on gluten but i decided to stay gluten-free even though i know that i can eat gluten without any problem i mean symptoms, its the long term damage im afraid of.

I don't understand. So you believe that you do not have celiac? does the doc think that also? What long term effects are you afraid of if you do not have celiac disease. Does anything happen when you eat gluten? Thanks for your input. Jennifer

[jhun]

I don't understand. So you believe that you do not have celiac? does the doc think that also? What long term effects are you afraid of if you do not have celiac disease. Does anything happen when you eat gluten? Thanks for your input. Jennifer

See, after getting diagnosed through bloodwork i tried an elimination diet and gluten challenge i got hurt most with soy but i dont react with gluten at all. most of the people in this board says that if youre blood work is positive then you have it, so to be on the safe side and avoid the long term effects i prefer to stay gluten free although like what ive mentioned earlier i can eat gluten without any symptom flare up but who knows what its causing my intestines. most of the posters here also say that a negative biopsy doesnt mean a thing if you have a positive bloodwork.

[pooter]

yep, negative biopsy means nothing if blood work is positive. The Dr. I work for says that dietary response is the best way to tell if you have a problem with gluten. He usually recommends one week completely off gluten, then have a huge gluten meal and watch for symptoms. So based on that advice I would say that two weeks off gluten would affect biopsy results.

[JennyC]

That is exactly why I plan to refuse to let my son be biopsied. He had tTG levels three times the normal max for his age, and he pediatrician told me to start the gluten-free diet right away. I did before knowing about the possibility of further testing. After three very successful weeks I am not giving him back his gluten goodies only to take them away again. Why put my three year old through a biopsy when there is large possibility that it will come back negative? I have seen fantastic results since putting him on a gluten-free diet. There's no going back now.

[L.A.]

I too had a positive blood test and a negative biopsy--but biopsy was done after going gluten free for 6 months. The number from my initial blood test were 59. The blood test was redone after a year and my number was 23 and then last year the number was 7. Doc says normal range is in the 20's.

[jhun]

jenny, in your son's case it's pretty obvious and conclusive that your son is a celiac. there is really no point in doing a biopsy. in my case i insisted on the biopsy because after a month in the gluten-free diet my symptoms are not improving. the biopsy was negative for celiac but revealed h pylori that was treated with antibiotics and made all of my gastro symptoms disappear. now, it is just the blood work that has tied me to celiacs which is really confusing sometimes im getting tempted to stay out of the diet but i just keep on thinking about my health's future.

[NoGluGirl]

Hi everyone,

I was recently told that I had celiac and to start a gluten free diet. I was gluten free for two weeks, and then had a biopsy which was negative for Celiac Sprue. Could the two weeks of gluten free food make my biopsy negative? The doc said he thinks I don't have celiac but to stay gluten free for 6 months and then add wheat. Does anyone have a take on this? Thanks.

Dear jlynn,

I had negative blood tests several years ago, and a negative biopsy. However, the doctor I am with now diagnosed me as Celiac. I began recovering in a few days of being on the gluten free diet. I had a team of doctors working on me before, and I do not even think they knew what villi was or what to look for. You do not get violently ill from a microscoping amount of gluten unless you are Celiac. My doctor told me she has had a handful of patients have this occur with negative tests who were Celiac. The doctors up at IU even missed my gallbladder, despite the supervising doctor of the group being the head of Gastroenterology and Hepatology! The gallbladder is part of the hepatobialary system!

Sincerely,

NoGluGirl