What Is The Point Of The Biopsy If You Have + Bloods

[Meg123]

Hi Again

Ive just been turning everything over that the Dr said, that Ive read on here and googled myself etc, and Im really confused. As Ive mentioned before Ive tested positive in the bloods for celiac disease, although it was not a very high positive. From the bit of reading I did on false positive for the particular test I was positive in, the only way it is ever a false positive is if I had another four conditions, which I dont have!

Celiac disease would account for a lot of my ongoing and growing problems.

From what Im gathering, Ive basically got it based on my bloods, my symptoms, and the fact that Im going down hill doing this gluten challenge thing. However I was still planning on having the biopsy simply because, well, you know thats the thing to do.

Over the past two days, Ive had three separate conversations about it with my hubby, my dad, and my mum. I talked with them about what the Dr said, what the results showed, what Ive learned on here etc. Each one of them asked me the same thing.....why even bother having the biopsy at all? The thing was, I didnt know what to say. I couldn't think of a reason to have it. I mean if it comes back negative, then Id be trying to convince myself to ignore it anyway. My levels of this autoimmune antibody as still too high with me being gluten lite, and getting higher over the years. Im certainly getting slowly sicker.

All I keep hearing in my head is gold standard. Like Im 'not a proper celiac if I havent had a positive biopsy result.....I know how Ive acquired that attitude, it comes from the main association here in Aus, and from other celiacs who have been through the biopsy process who I have met in real life. But Im starting to think, its the wrong attitude? It seems a bit crazy to have a biopsy (where there are of course risks associated with it etc) plus Id have to stay on gluten for possibly the next 18 months as Id be on the waiting list here in Australia, only to come back with a possible negative result which I apparently should be ignoring anyway.

It seems like Ive found myself lost in a sea of unknown stats etc. The chance of a false negative for this Vs the chance of a false positive for this, etc etc.

My Dr said shed refer me if I want, I got the impression she didnt see the point herself. She wants to see me gluten free asap. She simply said yes you are gluten intolerant, yes you are celiac. Then said shed refer me for the biopsy if I want. She then mentioned herself about it maybe not being detected at this point, but if I keep eating gluten further down the track I could get severely sick etc

So I want to know, what do you think I should do? Should I just eat the gluten for the next 18 months etc and have the biopsy? If I've had a positive blood test, is there a point of having the biopsy?

[zimmer]

I also had positive blood results, like yours, that were not really high. After going through the same thought process as you have gone through, I decided against the biopsy for the same reasons (plus various US health insurance reasons). Basically I would not have trusted a negative result, and would have gone gluten free anyway. I decided to get on with the healing and get on with my life. I have not regretted that choice for a minute. I'm confident it was the right thing to do, and I am feeling much better!

[AzizaRivers]

Forget the gold standard. At least half of us on here had some negative result at some point anyway but are still happily and healthfully gluten-free celiacs.

Biopsies can be useful to determine your level of damage, and sometimes people get them a few months after going gluten-free to check how well they're healing.

If you are satisfied with your diagnosis based on bloods, and you're ready to just start healing and move on, don't worry about it. If you'd have to spend over a year making yourself sicker just to get a biopsy that may or may not be positive, especially if you know gluten-free makes you feel better anyway, don't worry about it.

[Jestgar]

I think it's barbaric to cut slices out of someone's body in order to prove to a doc that the person gets sick when they eat some particular food. I skipped the biopsy.

[ravenwoodglass]

Since there are high rates of false negatives on both blood and biopsy the fact that you had positive blood tests make it pretty certain you need to go gluten free. Any procedure has risks and if you don't want to have the biopsy you don't have to have it to go gluten free. If you are still having issues after being gluten free for a few months then perhaps you could have it done to rule out other issues and to make sure you are healing.

[RollingAlong]

It isn't worth an 18 month wait. It might be worth it if you could get it done this month. You would have a baseline and later it may be easier to do followup inspections via pill cameras for example.

[Brenna'sMom]

My daughter's TTG was extremely positive, as were her Gliadan A results. I specifically asked about a biopsy since it's the "gold standard". Her doctor stated flat out that no one would biopsy her with such elevated blood results, especially given her age (4). I was so relieved to hear this, as I, too, couldn't understand a reason to do the biopsy in light of the blood results.

[Takala]

Since the doctor already wants you off the gluten without having to see the results of a biopsy, vs. waiting a year and a half while you pile on more damage, it would make more sense to go gluten free now.

I just laugh to myself at a few people who will think I'm not legitimate if I haven't got "official" results. I'm going into my eighth year of self diagnosis based on a combination of research, testing myself out with an elimination diet, and how I interpreted the tests the neuro didn't believe, and I've resolved enough symptoms that the regular doctor thinks it's legit that I am at least gluten intolerant. I'm atypical, never got really skinny, had more kidney, arthritis, and peripheral neuropathy problems, so what ? I would do the gene test if we ever get this country up to first world standards of not discriminating to get health insurance, (am sort of curious) but based on my ethnic history, plus symptoms, as I've said before, really, what else could this be ?

I would have loved to have known this sooner, I could have done some other things differently in life.

[shadowicewolf]

So then its not worth it?

I'm not a fan of biopsys and i don't react well to anistesia.

My blood test was high (like over twice te amount allowed) and i have noticed a difference since going gluten free (no more D!).

My mom still wants me to be seen by a GI doctor.

[Meg123]

......

If you are satisfied with your diagnosis based on bloods, .........

when I read this, I think that's the bottom line, SHOULD i be happy with a diagnosis based on the bloods? My Dr seems to be, half the ppl on here seem to be, but why am I not convinced that I do def have celiac disease. I don't know what's wrong with me, I feel a bit lost. Maybe I'll finish this little challenge, and then when I see the bloods have def gone up again, I'll feel more confident in not having the biopsy. I will then plainly see myself that as a direct result of increasing the amount of gluten in my diet, the level of autoimmune antibody's will have gone up.

I still feel really unsure. I think I'm not totally convinced for some reason. Why am I not getting this!!!

[mushroom]

Maybe because you don't want it to be true??

[Meg123]

I've been getting sicker each day on this challenge. Today, I;ve been so pale and strange in the head. After my four pieces of toast at lunch time, and my weet-bix for breakfast, and then after a biscuit (cookie) this afternoon, I started shaking and my heart was pounding, the pressure in my head felt terrible. I've been really disoriented etc (I used to get this years ago when on full gluten) I decided that they'd just have to do with a gluten challenge of only three weeks and two days. So i took myself off just now for that blood test, and I'm going gluten free now. I feel better already, just knowing I don't have to eat any more of that stuff.

I'll be interested to see if the levels go up much considering how terrible I feel. I'll probably get the results early next week. I've also been really anxious and a bit panicky too. time to say bye bye gluten and hopefully I'll be able to report soon of some sort of recovery.

Thank you again for everyones advice and information, you all do such a great thing for ppl in this situation. I'm going to be spending a lot of time in here now trying to learn more and find food to eat etc.

In Aus when you've been diagnosed by a postive biopsy you get the support of the main celiac foundation here, but I don't think I will apply for it since I can't wait the 18 months etc. I think a member / representative actually comes to meet with you and take you shopping. Not to worry.... would have been nice to get the full support.

[mushroom]

After my four pieces of toast at lunch time, and my weet-bix for breakfast, and then after a biscuit (cookie) this afternoon, I started shaking and my heart was pounding, the pressure in my head felt terrible.

OMG, I think I would die if I ate that I really could not do that I don't blame you for the abandonment. That alone should tell you it is not for you

Challenges are fine for the doctors who suggest them, because they don't have to suffer from them

Consider yourself diagnosed as a non-gluten eating person (for whatever reason, but certainly positive bloods is good enough for me). Get yourself on the path to healing.

[Cara in Boston]

From what I've read, a gluten challenge needs to be 3-6 months long. You could always make the appointment (18 months away) and stay gluten free until the months before you have it done. You may find that after a year of feeling great there is no real need for a biopsy. Then you simply cancel it.

I had very positive blood results and a negative biopsy. My MD diagnosed me with "gluten intolerance" (but really thinks I have IBS). EVERYTHING has improved with gluten-free diet and since my son has Celiac I know I am doing the right thing.

Cara

[ravenwoodglass]

I've been getting sicker each day on this challenge. Today, I;ve been so pale and strange in the head. After my four pieces of toast at lunch time, and my weet-bix for breakfast, and then after a biscuit (cookie) this afternoon, I started shaking and my heart was pounding, the pressure in my head felt terrible. I've been really disoriented etc (I used to get this years ago when on full gluten) I decided that they'd just have to do with a gluten challenge of only three weeks and two days. So i took myself off just now for that blood test, and I'm going gluten free now. I feel better already, just knowing I don't have to eat any more of that stuff.

I'll be interested to see if the levels go up much considering how terrible I feel. I'll probably get the results early next week. I've also been really anxious and a bit panicky too. time to say bye bye gluten and hopefully I'll be able to report soon of some sort of recovery.

Thank you again for everyones advice and information, you all do such a great thing for ppl in this situation. I'm going to be spending a lot of time in here now trying to learn more and find food to eat etc.

In Aus when you've been diagnosed by a postive biopsy you get the support of the main celiac foundation here, but I don't think I will apply for it since I can't wait the 18 months etc. I think a member / representative actually comes to meet with you and take you shopping. Not to worry.... would have been nice to get the full support.

It sounds like your body has really given you a definate answer. As far as support goes you can get a lot of it right here. You might also want to check at local health food stores or even strike up a conversation or two in the gluten-free aisle of your local stores to see if you can find other celiacs locally without having to have that formal 'biopsy proven' diagnosis.