I'm In A Quandary! (sp?)

[Bell]

First, I live in the UK, where I know the first advantage of the biopsy is that I get - woohoo!-some vouchers for gluten-free food.

But I have had a positive blood test (antibodies, not sure which one) and have felt MUCH better being gluten free for the past month. I've got an appt with a consultant next month, who I suppose will probably book me for a biopsy to confirm the problem (this could be more months away). The thing is, a few days ago I ate a very delicious chocolate cookie just to see whether my symptoms would return, and if so what exactly they were, and I have been in the worst place in the world until last night when things calmed down. I know that to get a true result in the biopsy I need to be eating gluten, but many of my symptoms were psychological as well as diarrhea and also nausea and general sickness. I don't know whether it's worth it to go back to being ill, for probably at least a few more months until the biopsy.

The biopsy also looks for other potential problems, so that's one bonus, but if it comes back negative for celiac, I will not only lose my actual "diagnosis" but also feel like a fraud to my friends and family, and just some kind of paranoid hypochondriac nutcase. I feel really torn over this issue.

I read somewhere else just now that a false positive blood test is unusual, but I know there are lots of different kinds of antibody tests, and I'm not sure which mine was. How do I find out, and which ones are the most accurate?

thanks,

Bell

[Guest goldie]

Hi Bell

I also live in the UK. I had positive blood tests- EMA and TTG ( 112 - normal range 0-10) and a sister with Coeliac.

Anyway, I was told that no matter what the outcome of the biopsy I was coeliac and immediately after the biopsy ( before results were known ) I was to go gluten free. When I asked but what if it is negative I was told by 2 different consultants that that didn't matter as the bloods were positive and they get it early these days before serious damage is done. However, I have a b12 deficiency and osteoporosis which I think is due to years of malabsorption.

My biopsy didn't confirm coeliac although it did confirm shortened villi ( ????). My consultant still diagnosed coeliac on the basis of the aforementioned criteria and I now have my prescription foods and regular check ups. There is a lot of debate about the accuracy of biopsies - I only had 2 taken and one of these was distorted so unable to be used !! Not sure why I went through the rigmarole of this procedure really.

However I think the bloods are now being used more and more to diagnose.

[Guest goldie]

Hi Bell

Me again - sorry I haven't actually answered your question. To find out which blood test/tests phone the doctor's surgery and ask. You are entitled to this info and are entitled to know the numbers etc not just positive/negative. The 2 best tests ( in my opinion) are the EMA and TTG. These are the ones usually done in the UK. Sometimes the EMA isn't initially done but is done if the TTG is positive. The EMA is seen as the "gold standard" blood test but I think is more expensive. The TTG is a newer test and I think it is the autoantigen to EMA.

[Fiddle-Faddle]

The biopsy was branded the "gold standard" for diagnosing celiac before the blood work was as advanced as is today, and before they knew as much as they do today. It's been at least 30 years since the biopsy was determined to be the diagnostic tool for celiac.

We know much more about celiac today.

For example, we know that those with DH do not always have villi damage, but they DO have celiac.

If there is good reason to look inside (for example, if they are suspicious of any other damage or disorders), then there would be reason to go ahead. But if it's JUST to confirm celiac, then I truly believe that's ridiculous. You're already producing antibodies to gluten and have major symptoms. I see no other reason to undergo an invasive procedure and sedation (which does carry slight risks of severe reaction), not to mention being in hospital during flu season, and being exposed to MRSA (the risk of infection is highest in hospital, not out in the community!).

Of course, the doctor/hospital/insurance industry seem to see no conflict of interest in ordering an expensive, invasive test to confirm what they already know.

One thing that puzzles me is that I have NEVER heard of a doctor saying, "celiac carries an increased risk of intestinal lymphoma, therefore we should look inside for early signs of that." Now, that would be a use of endoscopy that I could understand. But I've NEVER heard of a doctor saying that.

[sbj]

There are plenty of good reasons to have an endoscopy. Here's a link to an article that provides some reasons (https://www.celiac.com/articles/978/1/So-Why-Do-Celiacs-Still-Need-Biopsy-By-William-Dickey-PhD-MD-FACG/Page1.html).

• Biopsies are necessary when blood tests are negative.
  
  
• Biopsies are necessary where false positive blood tests may occur.
  
  
• Biopsies give a baseline for comparison. ... [They help] us decide whether we need to focus on celiac disease as the most likely cause of new problems or explore other possibilities involving the rest of the gut. The biggest diagnostic disaster of all, of course, is the gluten-free diet started without any sort of baseline investigation including antibodies, raising the specter of the infamous gluten challenge if a definitive diagnosis is needed.
  
  
• Biopsies provide a "gold standard" assessment of the state of the bowel.
  
  
• A follow-up biopsy gives an indicator of progress.
  
  
• The endoscopy not only allows examination and biopsy of the duodenum but also a look at the esophagus and stomach. ... Its important to have a good look for bleeding lesions in the upper gut.
  
  

We recognize that biopsies are not always the final arbiter in diagnosis. ... It makes sense to start EmA positive people on gluten-free without waiting for significant bowel damage

[curiousgeorge]

I read Dr Green's book and he is very clear in it that if you have pos. blood work and neg biopsy there is no need for the diet. I've found it REALLY hard to find any good info on what actually causes false postive blood work.

[Bell]

Thank you all, it's so informative on this forum. I would otherwise feel completely at sea. I am still unsure about how to proceed from here. I know it's a good idea to have the endoscopy, but eating gluten until then.... another matter entirely.

It's not just feeling a bit rubbish while eating gluten as you all know. It's the sense of absolute mayhem inside. I'll have to think a bit more.

Bell.

[Hummingbird4]

If I were you, I wouldn't bother with an endoscopy. You have positive bloodwork. It is extremely rare for false-positives. (False-negatives, on the other hand, are far more likely.) You also have a positive response to a gluten-free diet. If I were you, I would consider myself diagnosed and remain gluten-free.

[QueenOfPain]

Hi there, I'm still not sure if I have Celiac yet or not myself. You can ask your doctor's office to see your actual test results, that may give you some clues. As for me, I tested positive for the gliadin antibody part only--which could mean that I might have something other than Celiac from what I hear--but what that could be I have no idea. I had an endoscopy and colonoscopy done to check for Celiac and Chron's and they both came back negative. Yet, I'm still having major problems with no answers from the doctors. So, I decided to try the gluten-free diet for 3 or 4 months. My GI doc said that if I take the same Celiac blood test in a month or two and it comes back negative this time after being on the gluten-free diet, that it would support a Celiac diagnosis. So, that's my plan for now. Hope that gives you some ideas maybe. Good luck!

[Mom2Twins]

Well, I'm probably in the minority, but here is my take...

I was in the exact same position as you. I had positive EMA and TTG, my family doc told me it was celiac for sure. There was a 5 month wait to see a GI and have a biopsy. I wasn't sure what to do, but every celiac website said it was very important to get a biopsy done. Then I asked my question here, and many posters advised me against it. I felt very confused...

Luckily, I have a great doctor, so I went in for a chat with him. Despite what others had posted, he did indeed want me to have the biopsy if ONLY to check for cancer. He even had me do the barium x-ray, and told me if I decided against the biopsy, he would recommend a barium x-ray every year. You see, once you test positive, they can't be sure how long you have had celiac, or what kind of damage has been done unless they take a look.

In the end, I went gluten free for two months so that I felt human again, and then challenged myself with gluten for two months prior to the biopsy. Yes, I made myself sick, and in a perfect world, I should have been biopsied within weeks of my blood test, not months later. Alas, this is the real world...

I am personally very glad I had the biopsy done. I actually did it with NO sedation whatsoever (let's just say I was not feeling well that day). While very unpleasant without the drugs, it was not painful. It was actually pretty quick, and here in Canada it's an outpatient procedure. They explain the risks, which are pretty minimal.

The GI said he could see my stomach damage right away. The report on my intestines was two paragraphs long, but it showed no malignancies, and did show a lot of villous atrophy.

I didn't think it would matter to me if I had a biopsy or not, but it did. I helps keep me on the straight and narrow. I don't question my diagnosis. I know there isn't anything more serious going on.

Anyway, just my 2 cents.

[Bell]

I'm beginning to feel less emotional about it now!

I can certainly see the point of having the biopsy, regardless of its ability to confirm the celiac diagnosis. My gran died of some kind of stomach/bowel cancer, my nephews and nieces have allergies, my mum has a whole host of auto-immune diseases, my dad some kind of severe IBS that he won't talk about though we all know (!) etc etc...

My only issue was the fear of going back on the gluten, for obvious reasons. I'm going to continue to stay gluten free for now, because it's such a lovely relief, and then talk to my consultant about it in December. This being Britain, I'll probably wait for ages before my biopsy, but if it turns out to be close, then I'll just gluten myself as thoroughly as possible for a few weeks beforehand. If the biopsy cannot confirm celiac, then my period of abstinence worked, and if it picks up other problems, then thank goodness for that.

I realise that a lot of my fear is due to being found to be negative via the biopsy, and thus opening up doubt in my own mind and others. I'm glad the blood test is considered to be so useful in diagnosis. I'll call the docs later in the week to discuss which one I actually had. And to beg for more pain relief for when I do gluten myself.

Bell

PS. mom2twins - I know what you mean about feeling human again, even for a little while!