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Positive Blood Work, Why Biopsy?

Mom2Twins

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Mom2Twins Rookie
Mom2Twins
Posted

Hi everyone. I've done some reading on the board, and from the looks of it, I am very lucky to have a excellent family doctor who knows about celiac.

I've basically been anemic on and off since I was 15 (I'm 34 now) , all my prior doctors just chalked it up to being female. I had some gastro symptoms, but I was too embarassed to tell my old doctors about them (silly me). I've been majorly fatigued for what seems like forever. My previous doctor basically made me feel like a hypochrondriac.

Anyway, fastforward to today. I have a new doctor, and 9 month old twins. I've been struggling with anemia since they were born. I've also been feeling like total crap - severe headaches causing nausea nearly every night. When my anemia didn't resolve, my doctor ordered a celiac blood screen. I was really surprised - I'd heard of celiac, but never considered that I might have it.

So, my blood work came back extremely positive. I *think* the first test was the ttG, and it was over 200 (negative being less than 20). They then did a second test, which I *think* was the EMA, which I was told was also very positive (1:26 I think). Anyway, I live in Alberta, Canada, where we have a shortage of doctors, so I can't get in to see a GI until the third week of September. My doc had me try gluten free for two weeks, and my headaches went away with days. At two weeks, my sinus congestion was gone. I'm now at 3 weeks, and my stomach is feeling much better.

It seems like my doctor is very forward thinking, as he has basically told me I have celiac disease, no question. He has advised me to stay gluten free until about two months before my biopsy (which won't be until October), since I have to care for the twins and was feeling so sick. So this is what I am doing. I decided to go ahead with the biopsy and just be done with it. I also had a small bowel follow through, but this came back normal.

My question is this - how accurate are the blood tests? Is there any chance of being positive on blood work and not being celiac? I'm also curious about the small bowel follow through - I'm surprised nothing showed up. The results of the biopsy will not change my mind - I will end up gluten free regardless, but I am curious. My doctor seems to think that the tests are very diagnostic - so why do we have to have biopsies as well? I guess I am also scared of being told that I DON'T have celiac after the biopsy, because I feel such a huge sense of relief that I have finally found what has been making me ill. Sorry for the long ramble, I have lots on my mind...

Thanks!!!

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leadmeastray88 Contributor
leadmeastray88
Posted

I was hoping someone who has Celiac would chime in by now..

I myself am still going through the diagnosis process, but from everything I've learned thus far is that there are false negative blood tests, but no false positives. Therefore, if your blood test is positive then you most definitely have Celiac's, you can rest assured!

The problem with the biopsy is that you will have been on a gluten-free diet for months, which gives your villi time to heal. 2 months of eating gluten may not be enough to damage your villi enough again to get a positive biopsy result. The biopsies in themselves can also be inaccurate, because they might not take a sample of your intestine that is damaged, so its really hit and miss.

Either way, you have positive blood results which means a biopsy really isn't all that necessary for a diagnosis, but it'[s good to get one after being gluten free to see if it's working.

Hope that helps, and good luck!

Kim

Tim-n-VA Contributor
Tim-n-VA
Posted
I myself am still going through the diagnosis process, but from everything I've learned thus far is that there are false negative blood tests, but no false positives. Therefore, if your blood test is positive then you most definitely have Celiac's, you can rest assured!

With any medical test there can be both false negative and false positives. The following quote is from Open Original Shared Link

One negative aspect of the TTG antibody is that it can be falsely positive in a patient who has another autoimmune condition. TTG false positivity has been described in patients with both type I diabetes and autoimmune hepatitis. Theoretically, it can also be falsely positive in other autoimmune disease.

A very reliable test is still not perfect so some judgement comes into play as to how "certain" you need to be. The biopsy can have false results also. Having lots of different positive tests reduces the chances of a false overall diagnosis.

ShayFL Enthusiast
ShayFL
Posted

The real proof is in th pudding: The gluten-free diet

And you are responding positively with it. That would be ALL I need.

jerseyangel Proficient
jerseyangel
Posted
The real proof is in th pudding: The gluten-free diet

And you are responding positively with it. That would be ALL I need.

I agree :D

You have positive bloodwork and a positive response to the gluten-free diet (which is in and of itself diagnostic).

The problem with the biopsy is that it is always hit or miss--the damage to the intestine is patchy and even if the doctor takes several samples, he/she may still miss the damage.

The biopsy is still considered the "gold standard" of Celiac diagnosis, but that is slowly changing. A positive biopsy rules Celiac in, but a negative biopsy can't rule it out.

If I were you, I would consider myself diagnosed and forget about the biopsy. Honestly, 2 months back on gluten after being gluten-free for a while won't result in a positive biopsy anyway. You need to be eating gluten at the rate of 3-4 slices of bread a day for at least 3-4 months--and even then, there is a chance that the result will be negative regardless.

I think it would be a shame to re-injure your intestine after it has had a chance to heal--of course, it's up to you :)

Rachel--24 Collaborator
Rachel--24
Posted

In my opinion the biopsy is not really necessary at this point. The highly positive tTG, EMA and the positive response to diet is enough for a diagnosis. If there were no wait time I'd have gone ahead with the biopsy just to see how things looked...but after having gone gluten free for a period of time you may not get a positive biopsy anyway.

Either way the results of the biopsy arent going to change anything.

I would just continue with the diet and stay on the road to recovery. Why go backwards when you're already beginning to heal?

Mom2Twins Rookie
Mom2Twins
Posted
  • Author

Wow, I have to say everyone has given me a lot to think about... When I asked my doctor if the tests were screening or diagnostic, his reply was, "you have celiac disease, full stop.". So, in his mind, I am diagnosed, I guess. He did say he wanted me to go ahead with the biopsy, but it was ultimately my choice. One thing he mentioned was the increased risk of cancer, since he does not know how long I have been celiac. I think I am very lucky that my doctor is not from North America (South African).

I'm really not keen on eating wheat again, and feeling sick again, especially with the high demand of my babies. I really wish the wait was not so long - it takes a really long time to get in to see a specialist here. My consult is on Sept 18. I phoned and spoke with the nurse, who said the biospy is usually done 1-2 weeks later.

I stopped gluten (for an initial two week trial) when my test results came back - I think that was around May 23, so I have been gluten free for just around 1 month. If I start eating gluten again in July, that will be around 3 months of gluten intake before the biopsy. I am thinking that should be enough, since I haven't been off it that long? Again, I have a hard time getting my mind around making myself ill on purpose. But then I think if I just go through with the biopsy, then it is all over, and I can focus on getting well.

I am feeling pretty confused, I must say... :-(

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nora-n Rookie
nora-n
Posted

By the way, both the diabetes 1 and the autoimmune hepatitis (re.the reasons a Ttg test can be falsely positive) is heavily connected to gluten....I wonder how false it is then.

I keep reading that high levels of those antiboides always are celiac.

I am in Nrwy, Europe and it also take time to get the biopsy done, but one can ask to be put on the list where they call you in in case of a cancellation.

The reason is that your villi will heal by october and you probably should go back to gluten immediately and be put on the calcellation list, or go private before the villi heal and you have a negative biopsy after going back on gluten again. we keep seeing people on the forums who have negative biopsies after being off gluten and going back on gluten.

Is it possible to go private? Here it is, the waiting time is about one week.

nora

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