Positive Blood Work, Negative Biopsy?

[Bttrfly62]

Has anyone ever had positive blood work (tTG and Gliadin Deamidated ABS), but had a negative biopsy? I went in for an endoscopy yesterday and when I woke up, he said everything looked really good and there wasn't any visible damage. Obviously I have to wait for the results in a week or so, but it made me wonder if it was possible that it would come back negative because no damage (or possibly not enough damage?) was done at this point? Thanks in advance! 

[ravenwoodglass]

There are folks that have had negative biopsies even with positive blood work. Sometimes damage is patchy and it can be missed. With positive blood work you do need the diet no matter what the biopsy results turn out to be. Since you have postive blood work and have had your biopsy you can go ahead and start the diet you don't need to wait for the results.

You may even find you get some relief from your symptoms before the biopsy is even back.

[cyclinglady]

Visually, my GI thought I looked fine, but my biopsies showed a Marsh Stage IIIB (moderate to severe damage). Based on member comments, this seems to be the norm. After all the villi are pretty small! Remember, too that the small intestinal tract when stretched out is about the size of a tennis court. There are many damaged areas that could be missed. Let's hope your GI took the recommended six biopsy samples!

So, start that gluten-free diet. Chances are you have celiac disease!

[Bttrfly62]

I specifically asked how many he was taking (because of this page!) and he said 6- i know more than 6 is better, but at least he hit the minimum! Does the medical profession disregard the possibility of Celiac without a positive biopsy? Just seems like a flawed "gold standard" if it can't be 100% accurate! Seems to me that the biopsy should show SOME damage, or I will be very confused... malabsorption of meds was actually why I ended up in the GI world to begin with... would seem odd if enough damage was done to prevent proper absorption, but not to confirm a diagnosis? But stranger things have happened! Thanks for the responses! 

[cyclinglady]

The diagnostic process is flawed and the leading researchers know it, but the technology just is not there. I wish it were easier and consistent!

Waiting is hard when it involves lab tests. However, there is the option of going gluten free. Yep. It can be done. My husband did just that 14 years ago per the poor advice of his GP and my allergist. It worked! Symptoms resolved! He will say that I have had it easier in terms of medical support (friends and family too) but he refuses to do a challenge. Who can blame him?

So, there is always the option of going gluten-free and healing!

[Bttrfly62]

Once I take the plunge, I'm not going back- that seems like an awful thing to do to yourself and for no real gain. 6 months is a very, very, long time when you feel terrible! Especially after you've figured out what the problem is and have fixed it! 

[captaincrab55]

Were you eating gluten before the biopsy?     You could have DH.

[Bttrfly62]

Yep, no change in my daily gluten consumption- which is substantial! Dh? Dermatitis Herpetiformis? I don't have a rash. Honestly, my actual symptoms seem much milder than many others, the most bothersome of which overlap a great deal with my poorly controlled Hashimoto's. I think I was lucky- If you can say that with Celiac? Being on a regularly tested med allowed them to catch an absorption issue. I'm not sure I would ever have pursued any GI path if my ends hadn't been convinced Celiac was causing the dosing and control difficulties. I know many struggle for years to get on the right path and get the support they need. I had a Celiac diagnosis before I knew there was a problem!

[cyclinglady]

Lucky you! My Hashi's was swinging wildly just prior to my diagnosis, but my docs just attributed it to the last year of perimenopause. I went for a routine colonoscopy after I went through menopause. I was very anemic. Again, my other doctors just thought it was due to my Thalassemia (gentic anemia). But my GI guy caught it. At the time, I had no intestinal issues. My Hashi's finally stabilized but it took about two years.

[nvsmom]

Most celiacs do not have visual damage during the biopsy.  That's pretty normal so far.  

 

If the biopsy does come back negative, keep in mind that the biopsy has a sensitivity as low as 80%, meaning up to 1 in every celiacs will have a negative biopsy.  A negative biopsy does NOT disregard positive blood tests, it just doesn't support it.  If you have two positive blood tests, the celiac disease is a sure thing.    Page 12 of this report shows how specific the tests actually are: Open Original Shared Link

 

Good luck with the gluten-free diet.  

[Bttrfly62]

Well, results officially came back negative. He basically said that I had 2 strong positive blood results and one weak positive and a negative biopsy, so let's assume no celiac and keep going on gluten until we can see damage and then it's Celaic. Kinda confused and super irritated. I guess I don't understand how specific Celiac tests come back positive but because I havent jeopardized my health enough (I have only had mild symptoms for 3 years and med absorption issues for about a year) to have Celiac? I realize that I can always make that gluten free step myself, but being told it isn't really doing any damage, is not a real motivator. I kinda feel like I was given a pregnancy test at the dr's office that came back positive, but was told "you aren't 12 weeks pregnant so you can keep drinking alcohol" or something. Anyway, just wanted to update-good, but confusing, results.

[Palvyre]

Please ask for a genetic test and if positive move on to a trial gluten-free diet and retest antibodies in 3-4 months. I had a high positive test and my biopsy was negative. My doctor followed through with the genetic testing and then trial diet. My antibodies went to normal and I received an official diagnosis. Since then I had found out I have osteoporosis due to long term undiagnosed celiac disease, I am only 39 and male. This is not something to mess around with.

[foam]

You have auto immune disease , positive bloods. You have celiac disease. Genius idea to do nothing, wait for the damage to be permanent, wait till you get t cell cancer, hodgkins. Great idea:). STOP EATING THAT SHIT TODAY, thats what any sane doctor would tell you. Ps have the gene test, if you have that and eat enough bread you will get celiac disease... Eventually 

[Bttrfly62]

I felt the same way- i wasn't sure when the medical profession moved to "first do harm, then confirm it's harmful"- but I guess that's where Celiac is categorized? I've had the genetic testing- positive for the genes. Literally, he is not convinced without visible damage. Has anyone else had a GI dr who practiced that way? I do think it was inadvertently caught early (because of the med levels), but early is still positive, right? Has anyone ever had positive bloodwork, negative biopsy, stayed on gluten because doc says it probably isn't Celiac and never actually done any damage to the villi?

[ravenwoodglass]

You really need to consider yourself diagnosed, IMHO. You have the genes and you had positive blood tests. You ARE celiac. Did you get a copy of your biopsy results? How many biopsies did the doctor do? Some idiot doctors won't diagnose until the villi are totally destroyed. Plus with you still on gluten chances are you will need lots more appointments and repeat endos so it is much better financially for the doc to keep you on gluten until your gut is totally destroyed. Celiac...the one disease that doctors want us half dead before they will diagnose.

[foam]

We are going to come down pretty harshly on this because the long term undiagnosed are living with unfixable problems. Keep eating gluten and you may as well roll a dice on your next autoimmune disease. Get unlucky there and you can end up with organ failure. Youll be at a very high risk of cancer, brain disease etc. Its like dead serious buisness, for you gluten is poison and thats the respect it needs.

[Bttrfly62]

It's funny because i actually already have 2 autoimmune diseases- I guess I just don't understand why he was so dismissive. It isn't like I'm hoping something is wrong. I actually expected negative bloodworm, but if the bloodwork doesn't matter, I guess I don't understand the point in doing it at all. I've generally been pretty happy with my medical care, but I can't say I'm at all happy this time. As many long term Celiacs can attest to on the forum, remaining gluten free can be a real challenge to maintain when you are told you don't have Celiac (and are only very mildly affected by the symptoms) and gluten will not affect you either way.

[notme]

I felt the same way- i wasn't sure when the medical profession moved to "first do harm, then confirm it's harmful"- but I guess that's where Celiac is categorized? I've had the genetic testing- positive for the genes. Literally, he is not convinced without visible damage. Has anyone else had a GI dr who practiced that way? I do think it was inadvertently caught early (because of the med levels), but early is still positive, right? Has anyone ever had positive bloodwork, negative biopsy, stayed on gluten because doc says it probably isn't Celiac and never actually done any damage to the villi?

 

you have positive bloodwork!  not to mention the genes and the other AI diseases....  you have celiac.  get a new doctor.  i *was* half dead (ok, mostly dead!) before they even considered testing for celiac (never even heard of it, been going to doctor after doctor with seemingly unrelated symptoms)  start eating gluten free, read the newbie 101 section on the 'coping with' forum, and start feeling better!  what the crap is wrong with that doctor....  why in the world would he just dismiss such a serious (and systemic!) disease is beyond me.

 

welcome to the club you never wanted to join   the good news is that eating gluten free will probably make your other ai diseases more manageable.  good luck and welcome to the forum

[bartfull]

Get copies of all the blood work, the gene test, and of the biopsies. Then take them to a different doctor. If you're lucky enough to find a decent doctor he will look at those tests and give you an official diagnosis.

[squirmingitch]

The bottom line here is that the vast majority of GI's STILL don't understand celiac disease nor how to diagnose it and apparently have their heads up their ass when they think it's okay for you to keep damaging yourself until THEY can see the damage. It's a very sad state of affairs. Those of us who have been on here a while have heard it over & over & over again and still it seems to shock us every time.

It's extremely difficult to find a GI who actually knows what they're talking about when it comes to celiac disease. 

[nvsmom]

Well, results officially came back negative. He basically said that I had 2 strong positive blood results and one weak positive and a negative biopsy, so let's assume no celiac and keep going on gluten until we can see damage and then it's Celaic. Kinda confused and super irritated. I guess I don't understand how specific Celiac tests come back positive but because I havent jeopardized my health enough (I have only had mild symptoms for 3 years and med absorption issues for about a year) to have Celiac? I realize that I can always make that gluten free step myself, but being told it isn't really doing any damage, is not a real motivator. I kinda feel like I was given a pregnancy test at the dr's office that came back positive, but was told "you aren't 12 weeks pregnant so you can keep drinking alcohol" or something. Anyway, just wanted to update-good, but confusing, results.

 

 Ugh... This is why celiacs suffer for so many years.    They MISSED the damage in the biopsy so you don't have celiac?! Sigh.

 

I agree that you most likely do have celiac disease.  A negative biopsy does not support your positive tests.  That's it.  It doesn't mean that it cancels them out.