Negative Biopsy

[shadowicewolf]

I had my endo yesterday and the GI doc called today to tell me that the biopsy was negative and that he didn't think i had celiac and that i could go back to eating everything again.

I don't agree with him. Pretty much all of my symptoms coinside with Celiac as did my blood work. Yet he wants me to go back to eating gluten? He said at my consultation that if it came back negative he would do further testing, but at this time he doesn't believe i have it due to the fact that my insides looked 'normal' (with the exception of my throat which was really irritated/inflamed).

Furthermore he wants to just say that i have acid reflux and IBS. Ugh.

I go in on monday for an ultrasound due to the fact that my abdomen keeps hurting.

He said he wanted to get to the bottom of my issues to figure out whats going on.

But what i don't understand is why change my diet now (i'm seriously considering not doing that, due to how it made me feel before)?

I'm just so frustrated and not feeling well and ugh.

[Skylark]

If you have celiac bloodwork and a negative biopsy, there is some research supporting your thoughts that a gluten-free diet is a good idea. Developing celiac seems to be a process, starting with the TTG antibodies and progressing to villous atrophy. There was a study where they found people with anti-TTG but a normal endoscopy still had a metabolic profile that was the same as celiacs. I'd usually link the study, but I'm so dratted brain-fogged myself today that I can't find it.

Get your own copy of the biopsy report too. Doctors don't usually diagnose biopsies with only lymphocytic infiltration as celiac as it can happen for other reasons, but with a positive celiac panel it's a smoking gun.

I'd encourage you to listen to your body too. There is no harm in trying the diet strictly now that your tests are done. Your GI does not control what you put in your mouth.

By the way, watch your reactions to soy and milk carefully too. Lots of celiacs don't tolerate them, especially while you're healing.

[kareng]

Did he just do 1 biopsy? There is a lot of small intestine, would be easy to miss the 50% that is damaged & get a piece of good intestine.

I would definitely ask for a copy of the pathology report (biopsy), op report and the blood work. Make sure you got done what you think you had done.

He got the biopsy report back the next day? That's quick. Look at the actual report.

[shadowicewolf]

Alright i'll try to get a hold of the actual report (i meet with him again on monday so i'm sure that i can get it then).

That was my thought as well. You have about 20ft of small intestans there is a big chance of a miss right there.

Also the fact that i have been gluten free for 4 weeks. I told him this and he said it should be a problem

[ravenwoodglass]

Alright i'll try to get a hold of the actual report (i meet with him again on monday so i'm sure that i can get it then).

That was my thought as well. You have about 20ft of small intestans there is a big chance of a miss right there.

Also the fact that i have been gluten free for 4 weeks. I told him this and he said it should be a problem

Your being gluten free for four weeks would likely cause a false negative on the biopsy. If being on the diet for 4 weeks gave you a bit of improvement and you had positive blood tests you might want to suggest to your doctor that instead of doing a challenge and rebiopsying perhaps you could go back to gluten free and see if your positive blood test becomes negative and you symptoms improve after 3 to 6 months. If for some reason you need a 'formal' diagnosis perhaps that might get you one?

[maximoo]

Altho there is 20+ ft of intestine the pediatric GI told me he only takes samples from a 6 in area--that the endocope doesn't go around all those tightly wound twists & turns. Another procedure/test is needed to test any further into the intestines, & is usually not recommended. (well for kids anyway)

How many samples did your GI take & was it in a 6 in length of intestines as well? You should ask. Maybe you can suggest he take a stool sample & run lots of tests on it. Im sure some info could be obtained from that.

Stay gluten-free if it helps you.

[shadowicewolf]

I became gluten free after the blood test.

Now that the doctor said that both my grandmother and mother think i should go back on gluten... and they believe every word he said. Sorry but just because you didn't see anything doesn't mean its not possibly there.

If it were the case that i could go back on gluten, why the heck did i test positive on the blood test

Just so annoying

[shadowicewolf]

Altho there is 20+ ft of intestine the pediatric GI told me he only takes samples from a 6 in area--that the endocope doesn't go around all those tightly wound twists & turns. Another procedure/test is needed to test any further into the intestines, & is usually not recommended. (well for kids anyway)

How many samples did your GI take & was it in a 6 in length of intestines as well? You should ask. Maybe you can suggest he take a stool sample & run lots of tests on it. Im sure some info could be obtained from that.

Stay gluten-free if it helps you.

I'm not sure how many he did. I will ask when i see him on monday.

[mushroom]

I can only reiterate what others have said. Gluten free for four weeks definitely could be a problem. Doctors are incredibly blase about this. Just as is their lack of belief in non-celiac gluten intolerance. Celiac is NOT the beginning and end of gluten intolerance and if eating gluten free makes you feel better, do it. Your dietary choice has nothing to do with your doctor's opinion, it is something you do of your own volition.

I also agree with ravenwood that testing your blood later and getting a negative would be just as diagnostic as a positive biopsy, as far as gluten's influence on your body. And the way I read it, the reason you have acid reflux and an irritable bowel is due to the havoc gluten is causing.

[Meg123]

Your being gluten free for four weeks would likely cause a false negative on the biopsy. If being on the diet for 4 weeks gave you a bit of improvement and you had positive blood tests you might want to suggest to your doctor that instead of doing a challenge and rebiopsying perhaps you could go back to gluten free and see if your positive blood test becomes negative and you symptoms improve after 3 to 6 months. If for some reason you need a 'formal' diagnosis perhaps that might get you one?

That is such a great idea . I think I might do that too if mine comes back negative . I wonder why Gi's and GP's don't do that themselves, it seems so obvious.

[ravenwoodglass]

That is such a great idea . I think I might do that too if mine comes back negative . I wonder why Gi's and GP's don't do that themselves, it seems so obvious.

I does seem obvious doesn't it and there are some that do diagnose based on the combo of positive blood and recovery on the diet. Hopefully more will start.

I show negative on blood tests and was too sick from the second challenge to go to the biopsy. I was diagnosed based on my 'miraculous' recovery off gluten and my extemely bad reaction to the challenges. My new GI, not the one who demanded the second challenge that, not to exaggerate almost killed me, with a GI bleed, states that he puts anyone suggestive of celiac on the diet for 6 months after the biopsy no matter what the results as false negatives are unfortunately common.

[Roda]

Your being gluten free for four weeks would likely cause a false negative on the biopsy. If being on the diet for 4 weeks gave you a bit of improvement and you had positive blood tests you might want to suggest to your doctor that instead of doing a challenge and rebiopsying perhaps you could go back to gluten free and see if your positive blood test becomes negative and you symptoms improve after 3 to 6 months. If for some reason you need a 'formal' diagnosis perhaps that might get you one?

Didn't do a scope/biopsy for my youngest son. I am going to see if I can get his blood drawn soon (it's been a litle over 6 months gluten free) and see if his ttg is negative now. I'm going to have it sent to the same lab so everthing is the same (ref. ranges). Hopefully with everything, positive ttg, good response gluten free, bad response when we reintroduced gluten for only 3 days, my diagnosis and if his repeat blood work is negative, that is enough for an official diagnosis.

[shadowicewolf]

Why would my blood tests be positive and my GI doctor just, pretty much, blow it off by saying "well most people score high on the TISSUE TRANSGLUTAMINASE AB IGA" (as a 37 no less)? My mom agrees with the doctor because he 'couldn't find any sign of it on the biopsy' and my grandmother thinks i ate too much gluteny foods before the test (more like one or two small pieces of bread a day and a bunch of salad stuff).

Any ideas on how to bring up further testing from the GI doctor? (i need to have an official diagnosis for school reasons).

[kareng]

Why would my blood tests be positive and my GI doctor just, pretty much, blow it off by saying "well most people score high on the TISSUE TRANSGLUTAMINASE AB IGA" (as a 37 no less)? My mom agrees with the doctor because he 'couldn't find any sign of it on the biopsy' and my grandmother thinks i ate too much gluteny foods before the test (more like one or two small pieces of bread a day and a bunch of salad stuff).

Any ideas on how to bring up further testing from the GI doctor? (i need to have an official diagnosis for school reasons).

Did you get a copy of everything yet?

Take it to a " regular" doctor. Maybe he/ she will diagnose you based on the blood tests and a good response to gluten-free.

[shadowicewolf]

Did you get a copy of everything yet?

Take it to a " regular" doctor. Maybe he/ she will diagnose you based on the blood tests and a good response to gluten-free.

I did thats how i got my original diagnosis (and i got a letter from that). However, it is somewhat important to 'convince' my mom and grandma to accept it and also validating my original diagnosis. Right now they are all like 'if you eat a little bit it won't hurt you'.

I will get a copy when i go to the doc next friday.

I have to go in for an ultrasound on my abdomen on monday. IF they don't find anything would that somehow further support my 'celiac' diagnosis?

[ravenwoodglass]

I did thats how i got my original diagnosis (and i got a letter from that). However, it is somewhat important to 'convince' my mom and grandma to accept it and also validating my original diagnosis. Right now they are all like 'if you eat a little bit it won't hurt you'.

I will get a copy when i go to the doc next friday.

I have to go in for an ultrasound on my abdomen on monday. IF they don't find anything would that somehow further support my 'celiac' diagnosis?

Yes IMHO it would. Also since you had a positive blood test your GP may 'officially diagnose' you after you have had some time strict on the diet and have recovered from your issues. More doctors are becoming aware of false negatives on biopsy and will diagnose based on positive blood work, recovery on the diet and negative blood work after a time gluten free and reoccurance of symptoms if we get glutened.

[LivesIntheSun]

Did the doctor take an IEL count? New research shows that this is more indicative of celiac disease then villious atrophy.

Open Original Shared Link

Open Original Shared Link

They also talk about it on this interview-

Open Original Shared Link

I have been gluten free for 4 years although I still fell pretty unwell (nothing compared to before though). I was told by the doctor that after all ths time but with periodic glutenings I am almost certain to have elevated IELs and that this along with my case history would be sufficient for a diagnosis.

Good luck!

[Skylark]

Why would my blood tests be positive and my GI doctor just, pretty much, blow it off by saying "well most people score high on the TISSUE TRANSGLUTAMINASE AB IGA" (as a 37 no less)? My mom agrees with the doctor because he 'couldn't find any sign of it on the biopsy' and my grandmother thinks i ate too much gluteny foods before the test (more like one or two small pieces of bread a day and a bunch of salad stuff).

Any ideas on how to bring up further testing from the GI doctor? (i need to have an official diagnosis for school reasons).

Unfortunately, there is no further testing. Blood and biopsy are it. You to get strong support from your GP. Most people do NOT score high on tTG; only people with autoimmune diseases do. The one thing you could do is go strictly gluten-free and show the tTG antibodies falling.

You need to stay strong and refuse gluten. Hopefully when your family sees you feeling better they will humor you if nothing else.

[shadowicewolf]

Unfortunately, there is no further testing. Blood and biopsy are it. You to get strong support from your GP. Most people do NOT score high on tTG; only people with autoimmune diseases do. The one thing you could do is go strictly gluten-free and show the tTG antibodies falling.

You need to stay strong and refuse gluten. Hopefully when your family sees you feeling better they will humor you if nothing else.

There is one where they look foor the 'genetic' component of celiac i think.

[Skylark]

There is one where they look foor the 'genetic' component of celiac i think.

The genetic tests are mostly worthless. 30% of the US population has a so-called celiac gene (DQ2 or DQ8). Even worse, there are plenty of people without a so-called celiac gene who are celiac by blood and biopsy. If you happen to come up double-DQ2.5 you might have an argument based on the genetics but even then it's not diagnostic.

[psawyer]

The genetic tests are mostly worthless. 30% of the US population has a so-called celiac gene (DQ2 or DQ8). Even worse, there are plenty of people without a so-called celiac gene who are celiac by blood and biopsy. If you happen to come up double-DQ2.5 you might have an argument based on the genetics but even then it's not diagnostic.

What she said. Only 1% of the population, or 1 in 30 with the so-called celiac gene, actually develop the disease. US medicine is just beginning to recognize that people without either of those markers can also develop celiac disease. Europe is way ahead on that front.

[shadowicewolf]

ah well maybe i can get that blood test redone again or something.

I'm sick of being told "well the doctor said you can have it" Fyi, i was diagnosed gluten intolerent by a nurse practitioner and celiac by my GP. Hmmm.... no gluten from two one yes from the GI. Sorry, but gluten free rules out here.

Can ya tell how frustrating this is? -sigh-

(sorry for the rant)

[mushroom]

Well, I think you are just going to have to go gluten free, and feel better

[Skylark]

It sounds terribly frustrating. I take it you are still living with your family.

Stick to your guns! Going off gluten can help some of the other things in your signature like the Asperger's and stress issues too. Maybe if your family sees you improving they'll listen.

[shadowicewolf]

thank you for the support. It helps

I sure hope it does. I think i ate something last night that didn't agree with me and caused me to have that damn burning/numb feeling again (similar to what i had before going gluten free). I also think it was the reason i had a panic attack last night but i double checked everything (including the bbq sauce i had, website stated it was gluten free). I'm starting to think that was the cause.

Not fun not fun. Hopefully i'll have some answers this next week.