Does Anyone Have Any Solid Info On The Incidence Of False Negatives?

[frenchiemama]

Backstory:

I'm positive that my father is a celiac also. He has a lot of symptoms, I have it, and his first cousin has it. I convinced him to go get tested. So he made an appt with a GI, which he had to wait ~6 weeks for. During that 6 weeks, he went almost completely gluten-free (I know he wasn't totally gluten-free, because when I went to his house he was doing nothing to prevent cc and tried to feed me "wheat free" cereal that was NOT gluten-free). The entire time he said that he couldn't possibly have it because he didn't feel better (well duh, he wasn't totally gluten-free and he's in his 50's so 6 weeks might not be enough healing time anyway). Then he went and had his tests done, the were "borderline" according to his doctor and the doctor doesn't consider borderline tests to be an indicator of celiac. That was the answer that my dad wanted, so now he is 100% convinced that he does not have it.

Of course, he still has not gotten to the bottom of why he feels terrible all the time. He is coming to visit me in a couple of weeks and I would really like to have some compelling evidence that false negatives are relatively common. He is a very, very stubborn man. He is also a very educated man (college prof) so he is sometimes, erm, hard to reach about certain things. But I have to try, because I *know* in my heart that he has celiac disease and that he is harming himself by not following the diet.

Can anyone help me?

[Debbie65]

Hi,

I have had a false negative biopsy result. I´ll try to expain briefly.

Diagnosed when I almost died as a baby under a year old, had to be hospitalised for a long time to recuperate the damage was so bad.

My parents had me adhere strictly to the diet and I had follow up, yearly checks ally through my childhood until about the age of 16.

Unknown to my parents I used to cheat with the occassional choccy biscuit, jam sandwich etc and didn´t feel what I considered to be ill effects so when I left home at 17 I gave up the diet. My mother nagged until I told my doctor what I had done and his reply was that they now knew that the disease could be outgrown. That was that.

After about the age of 20 I have never really been healthy but if you feel bad all the time you begin to think you´re just a naturally miserable person(or I did) ignore the feelings and symptoms and put them down to life´s a jerk.

Eventually when I was in my late 20s I felt so awful that I went back to the doc and explained. To his credit, he immediately ordered the biopsy and off I went. I had to wait 3 months for the examination and during that time I went gluten-free( No-one told me not to). After waiting 2 weeks for the results, joy of joys, was told I didn´t have coeliac disease and left clutching a prescription for medication for IBS and a craving for a ploughman´s lunch with loads of crusty bread and lovely salad dressings.

I carried on with this medication and had automatic repeat prescriptions for around 3 years even although it wasn´t helping, just decided I was a miserable git after all. It didn´t really occur to me that I couldn´t imagine severe stomach aches, diahrea/constipation, nausea, anxiety etc. I had 2 children aged 6 & 4, a failed marriage and was trying to get through my degree at university - who wouldn´t be stressed?

Anyway, I´m now 40 years old and thanks to the people who post their experiences on this board I´ve been gluten-free for almost 2 months and feeling better. Not 100% but after the punishment I gave my body it will take time.

So much for keeping it brief!! But I wanted to give you as much info as I could to try and convince your dad. I am 110% coeliac and I did have a negative biopsy. Even if he´s still sceptical the fact that I have had a positive biopsy(and when I was a child it took 3 biopsies to confirmCD) and a negative one has to make him consider taking further action.

Good luck.

[mellajane]

Hello, I am 30 years old and have been mis- diagnosed since the age of 7. My dad was in the military so naturaly we also went to a military hospital. I get very sick and dehydrated we never had seen any sickness like this. In 2005 a Dr. suggested I stop eating wheat and gluten for a week to a month I would notice a difference immedietly. I noticed! When I was about 15 the symptoms subsided some, but around 21 they came back. I have been tested repeatdly and have completly negative results. Guess what this diet is the only thing that has worked since I have been sick. Im sticking to the diet two years later and have a completly different life. No more sick. This disease has effected my whole life and the people that love me most. Please express to your dad this disease is killing him. My brother who is 4 years younger has had IBS now for five years. I suggested to do some research on celiac disease and just try to stop for a week... he felt better instantly. Guess what his test came back negative. My advice, if it works stick to it. This disease is new to the medical field and DRs. are almost our worst enemy! Chances are we have other family members that this disease is extended from. If it makes your dad feel better let him know Im Italian and love food. This disease is challenging but it will make you feel normal and healthy again if you follow the diet. Good luck my heart goes out to you and your family. Good luck... Daddys can be so hard headed!

Sincerly Carmela Q.

Backstory:

I'm positive that my father is a celiac also. He has a lot of symptoms, I have it, and his first cousin has it. I convinced him to go get tested. So he made an appt with a GI, which he had to wait ~6 weeks for. During that 6 weeks, he went almost completely gluten-free (I know he wasn't totally gluten-free, because when I went to his house he was doing nothing to prevent cc and tried to feed me "wheat free" cereal that was NOT gluten-free). The entire time he said that he couldn't possibly have it because he didn't feel better (well duh, he wasn't totally gluten-free and he's in his 50's so 6 weeks might not be enough healing time anyway). Then he went and had his tests done, the were "borderline" according to his doctor and the doctor doesn't consider borderline tests to be an indicator of celiac. That was the answer that my dad wanted, so now he is 100% convinced that he does not have it.

Of course, he still has not gotten to the bottom of why he feels terrible all the time. He is coming to visit me in a couple of weeks and I would really like to have some compelling evidence that false negatives are relatively common. He is a very, very stubborn man. He is also a very educated man (college prof) so he is sometimes, erm, hard to reach about certain things. But I have to try, because I *know* in my heart that he has celiac disease and that he is harming himself by not following the diet.

Can anyone help me?

[ravenwoodglass]

My false negatives on blood testing delayed my diagnosis for many painful years. I have some damage that is permanent because doctors just blood tested and never even mentioned the diet except to say I should be happy the test was negative because I wouldn't be able to eat anything. Both of my children tested a low positive on blood tests as did my DH. They have seen great relief from many mental and physical problems gluten free. Your Dad should do the diet, all the way. In addition if someone shows ANY positive result they need to be gluten-free period. The idea of waiting until the test is a stronger positive makes as much sense as finding a small cancerous tumor and the doctor saying he should wait until it becomes larger and spreads before he starts treatment.

[taz sharratt]

Backstory:

I'm positive that my father is a celiac also. He has a lot of symptoms, I have it, and his first cousin has it. I convinced him to go get tested. So he made an appt with a GI, which he had to wait ~6 weeks for. During that 6 weeks, he went almost completely gluten-free (I know he wasn't totally gluten-free, because when I went to his house he was doing nothing to prevent cc and tried to feed me "wheat free" cereal that was NOT gluten-free). The entire time he said that he couldn't possibly have it because he didn't feel better (well duh, he wasn't totally gluten-free and he's in his 50's so 6 weeks might not be enough healing time anyway). Then he went and had his tests done, the were "borderline" according to his doctor and the doctor doesn't consider borderline tests to be an indicator of celiac. That was the answer that my dad wanted, so now he is 100% convinced that he does not have it.

Of course, he still has not gotten to the bottom of why he feels terrible all the time. He is coming to visit me in a couple of weeks and I would really like to have some compelling evidence that false negatives are relatively common. He is a very, very stubborn man. He is also a very educated man (college prof) so he is sometimes, erm, hard to reach about certain things. But I have to try, because I *know* in my heart that he has celiac disease and that he is harming himself by not following the diet.

Can anyone help me?

there are loads of stories on the site about false negatives, im one myself, had the first blood test which sujested i was then the second said i wasnt. the proof in the pudding is the eating as they say and the diet is for me the most posotive way of saying if you are gluten sensetive. i have the same prob with my mum she wont even take the test as she is convinced she doesnt have it, she gets kind of irritable now even if i bring the subject up. my advice is you can lead a horse to water but you cant make it drink. if you get my meaning

[Debbie65]

there are loads of stories on the site about false negatives, im one myself, had the first blood test which sujested i was then the second said i wasnt. the proof in the pudding is the eating as they say and the diet is for me the most posotive way of saying if you are gluten sensetive. i have the same prob with my mum she wont even take the test as she is convinced she doesnt have it, she gets kind of irritable now even if i bring the subject up. my advice is you can lead a horse to water but you cant make it drink. if you get my meaning

I have the same problem with my 19 year old son, I want him to be tested and he won´t have it. The old horse to water thing here doesn´t comfort me as I´m still in parent mode and feel responsible. Unfortunately he´s in "I´m a grown up" mode and won´t budge.

[cmom]

I finally convinced both my sons to be tested about a year ago. I emphatically requested all 5 tests from the lab which they passed on to the larger lab that ran the tests. When the nurse called with the results, she apologized b/c the LAB made the decision that they didn't need to do all the tests. I was furious. Anyhow, both sons were in the normal range. However, I highly suspect my 20 year old as having celiac. He has several possible symptoms and his tests were 30-40 points higher than his brother's even tho supposedly in the normal range. I am planning on having him tested at another hospital.

[mylady4]

I also had neg biopsy. I think that was because I did not have that many problems for that long to do any damage, about 1 year and getting worse. I had not been eating wheat that often to begin with and before that hardly ever since I was following the atkins plan. I did have slightly elevated blood work levels, 29.8 I think. I went a couple months gluten free and then was retested and it was down to 12 and the bloating had gone. That was the proof that my family doctor needed, I have an awesome doctor. I also found out that I my intestines were enflamed and has some ulcerations on them. I will find out more about this on the 1st when I see here again.

Do not rely on a biopsy for a diagnosis. I think that dietary changes are the best indicator. If they feel better after not eating wheat then there you go.

Nicole