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Why Biopsy With Positive Ema?

Boffin

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Boffin Rookie
Boffin
Posted

Hi All.

I finally got the date for my biopsy through and it's Tuesday next week. With the info on the biopsy the hospital also sent me details of all the risks involved - everything from infection and damaged teeth to hole puncture in insides needing admission and surgery (1 in 2000) and death (1 in 25,000)!!

Now, maybe these risks are considered "low" I don't know. But to me they're not low enough! As far as I'm concerned if I DON'T have a biopsy then I would have thought my chances of punctures to my insides on Tuesday next week should be nil and death oughtn't to be too much higher so long as I take care crossing the road!

I don't understand WHY this biopsy is considered necessary in order to get diagnosis as I've had "significantly positive" result on the EMA (endomysial antibody) blood test AND I have so many of the symptoms of Coeliac (I'm in the UK) Disease, why is the biopsy so important? Also, I've read on here that it's possible to have a negative biopsy result but still have coeliac. Agh, I'm just terrified of this biopsy and don't want to put myself at any risk if it can be avoided.

As far as I'm aware the treatment will be the same whatever the biopsy shows or doesn't show: Gluten Free diet.

Other things such as lactose intolerance and vitamin/mineral malabsorption could be tested for with breath and blood tests respectively.

Can anyone advise/help/reassure? Please?

I look forward to hearing from you.

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JennyC Enthusiast
JennyC
Posted

Many gastros consider the blood tests as a screening tool for those who need the biopsy. Many believe that the biopsy is the "gold standard" for diagnosis. In order to get an official diagnosis you usually need a positive biopsy. This is slowly changing, but unfortunately many doctors are stuck in their ways.

nikki-uk Enthusiast
nikki-uk
Posted

Hi Boffin! ( :lol: ) and welcome!!

The biopsy does indeed seem seem a rather invasive method for diagnosis (minimal risk) as you say - BUT!, you must understand that doctors like to deal with 100% facts.

They really don't like to hear ''I think I've got celiac disease...but didn't have the biopsy to prove it'' (BTW - blood tests are never 100% accurate)

You are of course completely entitled to go gluten-free without the biopsy (you don't need a docs permission to do that! :) )

I understand that you are very anxious about the biopsy - (which endoscopy units are VERY used too, and great at keeping you calm if you explain how nervous you are) but once it's done ...it's done for life - not questionable - defintive diagnosis (all in MY opinion)

Although tests such as lactose intolerance and vitamin and mineral deficiencies CAN be tested for, I do think (as you're in the UK) you might find the docs a little less than helpful if you are not prepared to 'validate' the diagnosis (I'm not saying it's right - just how it is :( )

What if you did the gluten-free diet for 6 months or more but had worsening symptoms??

What tests do they do then?? (and there's no biopsy sample to compare??...)...can you see where I'm going with this?? This might be how a doc might view things.

All said and done - the decision is yours.

It's my opinion that this is your chance (whilst still eating gluten) to prove any doubting doctors wrong - get your diagnosis - rule out any other nasties while in there - gain prescription food for life - + follow up care :)

Good Luck in what you decide :)

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
BTW - blood tests are never 100% accurate

Welcome aboard!

My understanding from what I have read over and over on this board over the last year is that the blood tests may have false NEGATIVES, but not false positives.

The biopsy, on the other hand, only provides an accurate positive if the doctor happens to biopsy a damaged area. Keep in mind that you have over 22 FEET of intestines, and that villi damage is often patchy and not visible to the naked eye. Therefore, if the doctor biopsies an undamaged section and misses damage that is there, you will be firmly told that you do not have celiac, even though your blood tests prove otherwise.

I don't know how it is in the UK, but here in the States, insurance companies have used a diagnosis of celiac to deny both health and life insurance. I know, it's ridiculous--celiac disease is the only disease I can think of that does NOT need expensive medication or surgery. It's the only disease that costs NOTHING to heal.

Many of us here have chosen to avoid the biopsy for the above reasons, but as Nikki said so well, it is ultimately your decision, and the reasons she mentions for going through with the biopsy certainly make sense, too, but only if the doctor happens to biopsy an affected area. Unless your intestines are so damaged that there are no undamaged villi whatsoever, a biopsy is going to be hit-or-miss.

holdthegluten Rising Star
holdthegluten
Posted

I was really nervous before the procedure, but let me tell you that when it was over i was so mad at myself for putting myself through all the nervousness and anxiety for such an easy, painless, comfortable procedure. There is nothing to be afraid of, it is a simple procedure that lasts like 15 minutes. Dont worry, youll be fine.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
I was really nervous before the procedure, but let me tell you that when it was over i was so mad at myself for putting myself through all the nervousness and anxiety for such an easy, painless, comfortable procedure. There is nothing to be afraid of, it is a simple procedure that lasts like 15 minutes. Dont worry, youll be fine.

I'm really glad you had such a positive experience. :)

I have had two endoscopies (and in neither of them were they looking for celiac :ph34r: ), both without sedation.

The first one was just fine, and I had no after effects. The second one was also just fine--except my vocal chords somehow got irritated or scratched. I was only hoarse for a couple of weeks, but I did end up with permanent damage to my vocal chords, which affects my singing voice. I've never been a professional singer or anything like that, but I am unhappy that I can no longer sing lullabies to my children.

Just something else to think about!

sparkles Contributor
sparkles
Posted

If you are going to go gluten-free anyway, I wouldn't have the biopsy. There are always risks in any kind of invasive procedure. There are also lots of false negatives with the biopsy. After all, the part of the colon where the villa are is (I think) 20ft long. Some of the villa might not show signs of atrophy... the GI doc is basically looking for a needle in a haystack. I wouldn't risk it. I would let the gluten-free diet be the "gold standard" for proving celiac disease or gluten intolerance. It's not like you need a doctor to prescribe medication in order to "cure" the disease!

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Boffin Rookie
Boffin
Posted
  • Author

Thank you all so much for your replies. You all argued your respective points incredibly well, which means I still feel unsure what to do! But I'm so grateful to you all for taking the time to reply and give further information on this.

Basically the upshot is that I don't feel that I need this biopsy in order to confirm the diagnosis of of Coeliac Disease. I will try gluten free regardless of the results because then I can listen to what my body tells me (I'm pretty convinced it will tell me that gluten makes me feel ill!).

Doctors might feel that they need the biopsy to confirm diagnosis. But then what happens as people have pointed out, if they happen to biopsy an undamaged bit? Then they'll say that they have conclusive proof that it's not coeliac and I'll get no support whatsoever!

If I don't have the biopsy but I have a positive response to the diet, and of course the positive blood test, perhaps it will be easier to argue my case for support?

As far as I'm concerned, the only reason that would convince that biopsy is necessary is if there's some likelihood of them finding something else on the biopsy that would need medical treatment, such as cancer. I know that untreated coeliacs have a higher risk of cancers but what I don't know is whether my risk of cancer at age 30 is higher than the risks to my health of having the biopsy. That is the big question I suppose.

In some ways I sometimes think "just do the test and get it over with and then it's done" but then also every fibre of my body is gripped with fear over it (what a drama queen I am!) and I just want to run away!

I hate this. It's tiring me out all this stressing and thinking! Thanks again for all your thoughts on this. If you have anything to add I'd be very interested to hear it. :)

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