Blood Test Positive...biopsy Negative.

[MollyBrack]

Two years ago I was diagnosed via bloodwork as having Celiac. Here are the results from that test:

Gliadin IgA Ab 32 0 - 19 Units H Tissue Transglut Ab IgA 98 0 - 19 Units H

 

Last week I was hospitalized for gallbladder surgery and an upper GI series of tests were done including a biopsy testing for Celiac which came back negative. 

 

One GI doc said that the blood test is 100% reliable and no biopsy was necessary.

The doc who did the endoscopy said that the blood work is completely unreliable and only a biopsy will tell the truth.

P.S. Both docs said "it's just an allergy...you can eat bread once in a while, just don't over-do it"

 

Now what??

 

Have I gone two years without croissants for NOTHING???

 

 

[psawyer]

Hi,

 

You were diagnosed two years ago. If you have been following a gluten-free diet for two years, it is quite likely that your villi have healed, and will give a negative biopsy result. Likewise, a blood test today would not find antibodies, because you don't make them without gluten, and that's why your villi can heal.

 

I showed a strong positive on a biopsy in 2000. A repeat procedure a few years later showed no abnormalities. It didn't mean I don't have celiac disease; it meant that my adherence to the diet was successful, and my intestines had healed.

 

A competent gastroenterologist should know that.

 

[bartfull]

If you've been gluten-free for 2 years you will test negative on the blood tests and the biopsy. Your doctor should KNOW that. And both of them should know that you CAN'T eat a little bread once in a while. They are both idiots, IMO!

[MollyBrack]

Yes, this makes sense to me. I read up a bit more and understand why the biopsy could be negative either way. 

 

And yes, it is alarming that both of the GI "specialists" I've seen, my GP and my rheumatologist ALL have said that Celiac disease is "just an allergy". 

[notme]

they should give them all celiac 'connect the dots' workbooks - if you have rheumatoid arthritis, that is also related to celiac.  i guess they all lose $$ if they don't treat you for one *symptom* at a time..........  and eating bread once in awhile will keep you sick enough to keep going to the doctor:  job security!  if you eat enough gluten, i guess you can keep all sorts of doctors in business

[w8in4dave]

Wow!! Thats crazy!! I mean I read all over that you have to be eating Gluten for a while to be tested positive. Why would they tell you that? That is some crazy stuff right there!! So have you felt better after your two years Gluten Free? 

[MollyBrack]

I just got  a letter from the GI practice congratulating me on being celiac free. I brought up the thing about negative results because I've been off gluten to my GP and she dismissed it as "internet stuff". 

 

So, who do you believe...four people who have been to medical school or a hundred different websites that contradict them? The one site that I think gives some credibility is www.uptodate.com which is the one many doctors use when researching a diagnosis. It is the latest information from medical journals and research outcomes. You have to be a doctor to see the whole site but consumers can see parts of it. My rheumatologist showed me the section on celiac where it CLEARLY says that it is NOT an allergy but an auto-immune disorder. Then he told me it's really an allergy and I should have birthday cake if I want it.

 

Dave -- I wish I could say that I feel a lot better off of gluten, but really only a couple of my symptoms have improved (headaches and brain fog). I do have rheumatoid arthritis so many other symptoms are the same - joint pain, fatigue, etc. It's sometimes hard to tell if being gluten-free has helped, but I think that it has and I intend to remain so. Although, I have to say I experimented with a giant chocolate eclair one day just to see what would happen and  what happened was...nothing. But other times I've gotten a little soy sauce and been sick immediately.

 

It's all very confusing and frustrating not to feel confident in my diagnosis and treatment, and to have my doctors all poo-pooing the whole thing. But I gather from reading various forums that this is a common situation and that many healthcare professionals still don't really understand Celiac disease. 

[kareng]

Open Original Shared Link

Why not believe people with a medical degree who are experts in celiac Disease?

[w8in4dave]

I just got  a letter from the GI practice congratulating me on being celiac free. I brought up the thing about negative results because I've been off gluten to my GP and she dismissed it as "internet stuff". 

 

So, who do you believe...four people who have been to medical school or a hundred different websites that contradict them? The one site that I think gives some credibility is www.uptodate.com which is the one many doctors use when researching a diagnosis. It is the latest information from medical journals and research outcomes. You have to be a doctor to see the whole site but consumers can see parts of it. My rheumatologist showed me the section on celiac where it CLEARLY says that it is NOT an allergy but an auto-immune disorder. Then he told me it's really an allergy and I should have birthday cake if I want it.

 

Dave -- I wish I could say that I feel a lot better off of gluten, but really only a couple of my symptoms have improved (headaches and brain fog). I do have rheumatoid arthritis so many other symptoms are the same - joint pain, fatigue, etc. It's sometimes hard to tell if being gluten-free has helped, but I think that it has and I intend to remain so. Although, I have to say I experimented with a giant chocolate eclair one day just to see what would happen and  what happened was...nothing. But other times I've gotten a little soy sauce and been sick immediately.

 

It's all very confusing and frustrating not to feel confident in my diagnosis and treatment, and to have my doctors all poo-pooing the whole thing. But I gather from reading various forums that this is a common situation and that many healthcare professionals still don't really understand Celiac disease. 

 

Sorry to hear after 2 years your really not feeling any better. Wish there was something magical I could say. But there isn't. I am going to pop into that site you posted. Good luck to you I hope you find the answer you need.

[0range]

Many doctors are very deficient in their knowledge about autoimmune disorders, not just celiac. Hasn't it been uniformly agreed upon that it isn't an allergy or an intolerance? Strikes me as so odd that specialists would not know this.

[Mum in Norway]

I study nutrition, and last fall we had a course on diseases. This was only very basic, but even there we learnd that 'celiac is an autoimmune disease that is triggerd by consuming gluten. Gluten will then caus the body to attack the small intestine, resulting in a flattening of the villi. Only cure is being glutenfree for life, and after some time of being glutenfree the intestine will heal and there will be no sign of the disease.'.

 

Thats about all it said about celiac, but it seems to be more than many docs' know! How can that possibly be?

[nora-n]

of course the biopsy will be negative after a while off gluten!!

 

Where was that?

Do they really tell patients their celiac went away?

[bartfull]

You should contact the AMA and let them know what these doctors  are telling patients. They should be stipped of their licenses to practise!