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Biopsy Results "normal"

kathy1

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kathy1 Contributor
kathy1
Posted

My husb was dx in dec via a blood test.He has never had any symptoms of celiac disease. He had a biopsy last week and the Dr called today stating that the biopsy came back normal. the Dr then said that a gluten-free free diet was not necessary.The Dr stated that some people can carry the gene but never get the disease.

Any advise???

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chrissy Collaborator
chrissy
Posted

was he being tested to see if he carried the gene, or was he being tested to see if he actually had celiac disease?

christine

Guest nini
Guest nini
Posted

In my opinion if he has a positive blood test, he has it, Period. The biopsy can ONLY rule it in IF they happen to find damage, but it cannot ever rule it out. NEVER.

Since he's already had the tests, Definitely he needs to go on the diet and stick to it 100% for life. The Dr. that told him he doesn't need to be on it is silly. Sorry. You have symptoms, your blood test shows you have it, but we haven't found any damage YET so you don't need to be on the diet. PHOOEY.

Get him on the diet ASAP. SO WHAT He didn't have any of the "typical" Celiac symptoms BUT why was he tested in the first place? Celiac can manifest in so many ways that are atypical, and even the experts are continuing to be surprised with asymptomatic people that have this. Consider it a blessing that he found out BEFORE getting significant damage and getting seriously ill...

Read Dangerous Grains... this book will explain a lot...

kathy1 Contributor
kathy1
Posted
  • Author
was he being tested to see if he carried the gene, or was he being tested to see if he actually had celiac disease?

christine

I am not sure what blood tests my husb had in dec. Only that the Dr called and said he had celiac disease. Now he has had a normal biopsy.

He was tested only because his mother has it and since he was at the Gi for another issue, the Gi said lets rule it out.

Can I guess now that he does carry the gene only?

Guest nini
Guest nini
Posted
I am not sure what blood tests my husb had in dec. Only that the Dr called and said he had celiac disease. Now he has had a normal biopsy.

He was tested only because his mother has it and since he was at the Gi for another issue, the Gi said lets rule it out.

Can I guess now that he does carry the gene only?

His mother has it and his bloodwork was positive... hmmmmmm

he has it.

Find out specifically what tests were done, and which tests were positive.

I have it, my daughter has it even though her blood tests were inconclusive...

Yes, I do believe that especially if he is genetically predisposed to it (which he is) that he does not need to be eating gluten.

Rachel--24 Collaborator
Rachel--24
Posted

Find out what bloodtests were done and what the numbers were. In my opinion if the bloodtest was positive he's got Celiac. Especially if he's got positive bloodwork and family history. The biopsy is a "hit or miss"...it can only rule Celiac in but cannot rule it out. There are many reasons why a biopsy can come back negative even if he has Celiac. The damage could have been missed...they only pull out a few samples but there could be damage in other areas which were not biopsied. He may have Celiac with no intestinal damage YET....early stage of the disease. The person looking at the samples could have made an error. The point is taht a negative biopsy doesnt mean he does not have Celiac. I've heard of people in the same situation...positive bloodwork and negative biopsy. Doctor tells them they dont have it and a few years later they have a positive biopsy. What that means is that because they took the doctors advice the first time....they ended up with damage...which is not a good thing.

Guest nini
Guest nini
Posted

you said it better than I could Rachel...

exactly my point, people got a positive blood test but negative biopsy and on advice of Dr. continued to eat gluten and then several years later when they were much sicker, biopsy is then positive.

Do you want to stop it now in the early stages before your husband and your son get ill, or do you want to wait until they are so sick that there is visible damage? I would rather be proactive and stop the vicious cycle now.

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chrissy Collaborator
chrissy
Posted

kathy, tell your doctor that you would like a copy of his and your (was it son?) anyway, that you want a copy of the blood test results to have in a file at home. if he isn't exactly good at explaining things, post the results on here and i am sure someone can tell you what the tests and the numbers mean.

christine

kathy1 Contributor
kathy1
Posted
  • Author

Thanks for the info. I am trying to comprehend so much in a short time, I am finding it overwhelming! We are trying make educated decisions for both my husb and my son. That is why I have so many questions.

I have to fully understand it before I can accept it and for me that means ruling out the other options.

I have already requested a copy of my sons test results. I will call my husb Dr and ask for his as well.

Is it "possible" to have the gene, and no symptoms of celiac disease, eat gluten food and never get any intestinal damage?

Thanks

Rachel--24 Collaborator
Rachel--24
Posted
Is it "possible" to have the gene, and no symptoms of celiac disease, eat gluten food and never get any intestinal damage?

A large amount of the population carries the gene but obviously not everyone with the gene gets Celiac. A person with a family member with Celiac has a higher chance of also getting Celiac. A person who has a family member w/ celiac and also has had a postive blood test themselves has a high probabilty of having Celiac. Not having symptoms doesnt really mean anything. There are plenty of people who have completely flattened villi seen on biopsy but can eat gluten all day long w/out feeling sick. My doctor told me these people will eventually become symptomatic....its only a matter of time.

Guest nini
Guest nini
Posted

is it possible? well, theoretically yes, but given how little the medical community really knows (or agrees on) about Celiac, do you want to take a chance that the gluten is not doing damage, especially with positive results and genetic predisposition? Not me...

but I'm coming from a different place than you. I know what it's like to be sick all my life and not have an answer why until I was so sick I almost died. And watch my little baby fail to thrive and have the so called "experts" tell me that she did NOT have celiac but IBS and to give her more wheat... same idiotic thing my dr.s told me several years earlier...

julie5914 Contributor
julie5914
Posted

Yes, you can have the gene and not have the disease. Usually the disease is activated at some point, usually a stressful time for the body, if it is activated at all. It is the same gene I believe that causes diabetes, but not everyone with celiac has diabetes and vice versa.

Usually, however, the celiac blood test is a panel that tests for anitbodies to gluten and a specific one (either the EMA or the tTG) that causes damage to the instestine. If these are positive, celiac is 98-99% there, symptoms or not. Some people have inconclusive blood tests, where part of the panel is positive and part is negative. This is sometimes called gluten intolerance but not celiac disease. Either way, most people will on this board will tell you that if any part of this blood test is positive, it is best to stay away from gluten.

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