Biopsy Results

[emsmom]

well we finally heard from our GI about my DD biopsy it was negative. I have to say i am happy but very surprised so is her pedi. celiac disease seemed to be the answer for all her issues she has had since birth. she had 2 blood test the first was very high positive, the second was neg according to the Gi doc the second was more accurate. The GI Doc has no answer to why her tummy hurts so bad all the time. We had to put her on a liquid diet for 2 days before the biopsy and she was fantastic, never complained of tummy pain. the night of the biopsy she ate dinner and her tummy hurt so bed she went to bed and its been hurting ever since. has anyone ever had a biopsy come back neg only to find later they had celiac disease

[DLayman]

I am going through the same struggle. I did a poll here and 7 out of the ten people who voted had a negative biopsy but were diagnosed celiac. Now that you have had a positive blood test negative biopsy I would say the thing to do is to put her on a gluten-free diet for three months. If she improves then I would stick with it.

How old is she? if she is very young 3 and under there is a higher incidence of negative biopsies from what I have learned.

I only have the biopsy right now.for my two year old. negative..

We are doing some stool studies,and he is on a regular diet and deteriorating. I give it one more week, one more week to hear back on the stool study and to convince the doc to draw blood, then he is on the gluten-free diet. If I have to go back to my regular doc to get teh blood draw I will.

He was on it for a little over two months before and he did great, gained weight and his stools improved. Now we are going back to the loose stools and now weight loss.

I think I also need to get tested as well. I have followed his diet and now I am losing weight. 6-7 pounds in the last two weeks.

And trust me I'm not trying!!!

Gotta run I hope you find answers.

Denise

[Guest jhmom]

HI emsmom,

YES you can have a negative biopsy and still have celiac disease (I did)! THey think the biopsy is the "gold standard" but what don't seem to understand is just because they take a biopsy it may not be in the damaged area, or possibly no damage has been done yet. Doctors want to see everything in black and white and if it's not right there in front of them they seem to dismiss celiac disease, I guess it's because they have been taught that it is a "rare" disease and that's just not the case. We ALL need and deserve accurate answers!!!

If your daughter had positive bloodwork results I would take it at that and start her on a gluten-free diet for a couple of months. If she has celiac disease then you will see an improvement within weeks and that in my opinion is the real test!

If you feel better with a doctors diagnosis then you could always check into Open Original Shared Link. Dr. Fine uses a stool sample which is more sensitive than the blood. This is the route I went and my results were positive, I started a gluten-free diet and could tell a difference within days, the doubling over abdominal pain was GONE!

I hope you get some answers soon so that your daughter does not have to suffer with tummy pains anymore!

[gf4life]

My biopsy came back negative. I made myself sick for two months preparing for it, and according to my doctor it is "totally clear". I don't really trust her. She admitted before that she only consciders it celiac disease if the villi are completely damaged. The biopsy is not the best test, and certainly not accurate enough to be conscidered the "gold standard". There are also people who are obviously gluten intolerant, but just do not have the same high level of intestinal damage. This is not called Celiac Disease by the medical community, but the treatment is still the same, a lifelong adherance to a 100% gluten free diet.

Your best bet would be to have your daughter tested through Open Original Shared Link . They have a new cutting edge test to diagnose gluten intolerance( they call it gluten sensitivity, but it is the same thing) in its early stages. And early stage does not necessarily mean mild symptoms. My symptoms were very severe and have been present for over 25 years, yet I only show low level positives on the Enterolab antibody tests. But a positive is a postive. I also carry the main gene for celiac disease. By the way, I tested negative on the blood tests and then negative on the biopsy, but there is no disputing the fact that my health improves by leaps and bounds on a gluten free diet.

God bless,

Mariann

diagnosed by Enterolab Nov. 10th, 2003

[emsmom]

Thank You hearing that some of you also had a neg result makes me feel a little better. My GI wants me to feed her a regular diet for the next couple of weeks and keep a diary of food eaten and when and how bad the pain is. I spoke to my Pedi and she suggested i try the gluten free diet for a month or so and see if she gets better. I told my gi i would feed her a regular diet this week being school vacation then I am going to start her gluten-free and see if there is a difference. I am convinced of celiac , it explains all her issues. the Gi has no explaination he talk about pain managment, can you imagine no diagnoses but just putting her through pain management? give me a break. He does not even suggest trying gluten-free. I may try that lab everyone keeps talking about next.

[gf4life]

emsmom,

My GI doctor won't consider celiac disease for my diagnosis either, but when I asked her if she could tell me of any other disease that would cause such a bad reaction to gluten, she couldn't answer me. When my biopsy came back neg. she said that we could give up this whole "sprue" idea now, and she is sticking to the diagnosis of IBS. She doesn't want to see me back for a year! Now I just feel like this is bad medical practice. I'm glad your daughter will only have to eat a regular diet for a week. I hope she gets better real quick on the gluten-free diet.

God bless,

Mariann

[wdavie]

I am of the understanding that you can have positve bloods but negative biopsy, and I have been led to believe that Biopsy is 100% gold standard. As Flattened Damaged villi is the result of Celiac Disease (auto immune response) as opposed to gluten intolerance which causes illness/upsets but not an autoimmune response. My daughter had a positive biopsy last september after positive blood tests.

Alot of people go to the biopsy after going Gluten Free, this negates the test completely. You must be on a gluten diet to have an accurate biopsy result. It is suggested at least 6 weeks of a diet containing gluten to give an accurate result. If you have a biopsy whilst eating Gluten free your body will not be having the autoimmune response that is evident in a positive biopsy.

I am getting confused reading these posts and it concerns me that some people are being diagnosed as celiac without full investigation. It is unfortunatley one of the most misdiagnosed diseases round today and it will be wonderful when there is one foolproof gold standard test to prove the differences between Celiac Disease, Gluten Intolerance and Gluten Allergy.

[gf4life]

I am of the understanding that you can have positve bloods but negative biopsy, and I have been led to believe that Biopsy is 100% gold standard. As Flattened Damaged villi is the result of Celiac Disease (auto immune response) as opposed to gluten intolerance which causes illness/upsets but not an autoimmune response.

Celiac Disease is the end stage of Gluten Intolerance. The are both an autoimmune response, and the problem (well, one of them anyway) is that there are no standard tests for doctors to perform that will find gluten intolerance in it's early stages. There is a test though, that is offered by Enterolab, but it is new and not accepted fully in conventional medical practice. It is able to detect the antibodies in the stool, before the damage to the intestines is severe enough to be detected on the biopsy. The treatment is the same, 100% gluten free diet for life, and if someone who is gluten intolerant continues to eat gluten, they will most likely develop full blown Celiac Disease later in life. No one knows why one person will get celiac disease in childhood, and other people won't develop it until late adulthood, but the fact remains that their body is damaging itself by attacking the gluten, and this could have been happening all along.

You are fortunate to have a firm diagnosis, for those of us who know gluten is a problem for us, but we test negative on tests, life can be just horrible. We constantly doubt ourselves, but everytime we get into some gluten our symptoms return. It would be nice to be take seriously by the medical field, and not treated like hypochondriacs. The worst is when our children are sick, but we can't get the diagnosis. Many people end up going gluten free on their own and never getting a diagnosis, which can often come back to haunt you. People don't take you seriously unless a doctor has slapped his "seal of approval" on your illness.

I'm sorry if I am ranting at you. I am frustrated today, since I just found out that the lab messed up my kids celiac panel of blood tests and now I have to wait until April to get in to see the doctor (or pay @$1200 at Enterolab) and all my kids are symptomatic. I just want to know for sure if they are gluten intolerant before putting them on a gluten free diet.

God bless,

Mariann

[wdavie]

Thanks Mariann,

You are not ranting at all, I understand your frustration completely. Myself and 1 son have shown a slight elevation in one of the blood tests but not enough to indicate further testing or going gluten-free. Niether of us are symptomatic, he is 5. So I have opted to play the waiting game. I will have bloods done in 12 months on both of us if we remain asymptomatic.

These new tests are not an option for us as we are in New Zealand and I am not waware if these tests are available here. I will look into it however.

Cheers

Wendy