What's The General Consensus On Intestinal Biospy?

[celiacsmom]

Hi all - We are still thinking about whether or not to put our son through the biopsy. I am the type who needs absolute confirmation of things, BUT I can also put this aside if the biopsy really isn't necessary. He's been a pretty sick guy for a few weeks now and has lost almost 10% of his weight in 2 ½ weeks. I just want to get him feeling better ASAP (and I'm pretty darn sick of cleaning up puke!).

Also, are there any parents here in VT, NH, MA who considered Children's Hospital at Dartmouth vs. Boston Children's Hospital?

Thanks and I'm looking forward to getting to know some of you over the long haul.

Heidi

[Guest nini]

If he was dx'ed by blood test, then in my opinion the biopsy is absolutely NOT NEEDED. Neither myself nor my daughter had the biopsy. I was dx'ed by bloodwork and positive dietary response, and my daughter was dx'ed on positive dietary response. If you forgo the biopsy and go ahead and put him on the diet, you should see enough of a dramatic change to convince you.

There is a growing consensus among the Celiac "experts" that the biopsy as the gold standard of diagnosis is going by the wayside. The blood tests are more sensitive and specific and more of the experts are recognizing positive dietary response as a more valid diagnostic tool because biopsies can MISS damage, and in small children damage MAY NOT have even begun to occur yet, at least to the point of total villous atrophy, and my question to you would be, do you want to go through the biopsy, if it's negative keep him on gluten only for a few years or so on down the road for him to get progressively more sick? No? Then you do not need the biopsy. Start the diet today and get him on the road to better heath.

[VydorScope]

Hi all - We are still thinking about whether or not to put our son through the biopsy. I am the type who needs absolute confirmation of things, BUT I can also put this aside if the biopsy really isn't necessary. He's been a pretty sick guy for a few weeks now and has lost almost 10% of his weight in 2 ½ weeks. I just want to get him feeling better ASAP (and I'm pretty darn sick of cleaning up puke!).

Also, are there any parents here in VT, NH, MA who considered Children's Hospital at Dartmouth vs. Boston Children's Hospital?

Thanks and I'm looking forward to getting to know some of you over the long haul.

Heidi

I am not a doctor, nor do I prentend to be one, however I have a degree in statistics and this gives me a better understanding of testing and test results then problably most doctors.

The Biopsy, IMO, is a poor diagnostic tool. It can only CONFIRM celiac disease, it can never, ever, under no known conditions ever rule out celiac disease. This means you will gain no NEW information by it. If you have a postive blood test there is , IMO, no reason for a biospy. There are other good reasons for endoscopies, to look for OTHER conditions, but as relateted to celiac disease, the biopsy is a poor outdate choice that I hope goes away soon.

Again, I am not a doctor, nor have I stayed in a Holiday Inn Express recently.

[elfkin]

Ditto. We had the biopsy done with our toddler son. The Doctor even wanted to do another one three months later to see if it was better?! The biopsy day was traumatic for our son and us. Then we went to the University hospital. He (the new Doctor) did look at the slides from the procedure since it had already been done, but he said we didn't need another one (biopsy). All of his blood work had pointed to celiac, so in retrospect, it seemed somewhat unecessary. However, I am not a Doctor either! Just coming from the standpoint of having had it done and not really thinking it was all that.

[Dietcokehead]

My son's bloodwork was negative but biopsy was positive. I would say that if your child has positive bloodwork and has been ill and showing symptoms of celiac disease I wouldnt bother with the biospy *unless* you feel you are going to wonder in the future. It was a very easy procedure for my son, recovery was fast, and we did a rebiopsy in 6 mos that went fine too.

[skoki-mom]

I think this is a very personal decision, that you and your husband need to weigh all the potential pros and cons. For myself, I *had* to do it for my own peace of mind because I am asymptomatic. I know the stage of my disease when I started the diet, and I am glad there is a baseline to guage my progress. However, before I had my kids blood tested, I had already decided that if they came back positive I would not put them through a biopsy. With positive blood work, and in our case, a positive family history (both my sister and I have Celiac), I didn't think it would be worth the angst it would cause.

Best of luck with your decision and I hope your child is feeling better soon.

[tarnalberry]

It is a very difficult decision. If it helps at all, please realize that antibodies are produced only in response to something the immune system is fighting against. If the body is producing anti-gliandin antibodies, it believes that the gliandin protein is a threat to the body that it wants to be rid of. If you don't ingest gluten, your body will have nothing to respond immunologically to.

[jeffreyd]

My son was 27 months at diagnosis. His TTG came back at over 100 and his IGA and IGG tests had one above 50 and the other above 80. He had a distended stomach for over 1 month, was completely lethargic and the worst stools imagineable, everything seemed to pass right through him undigested.

We decided to forego the biopsy and within 2 to 3 weeks of the gluten free diet, he was beginning to get back to himself.

He has been on the gluten free diet since early August, we also had him on a lactose free diet for three months. I wish you alot of luck, he is amazing at how well he has adjusted. He sees us reading the ingredients and he asks "does that have wheat in it?"

I, on the other hand, followed up with my doctor for my bloodwork given my son's diagnosis. My results came back as 49 TTG, and 20 IGA and 11 IGG. However, we were shocked since my wife tested negative (blood and biopsy) and her mother and grandmother both tested positive for celiac (both blood and biopsy) and I am GI problem free....we thought for sure it came from my wife's side of the family. I went through with the biopsy on last Friday, however I am not so sure why. I think my main reason was that it gave me an excuse to continue eating gluten for another 4 weeks while I waited for the appointment.

I am now gluten free since the biopsy...three days. I had cut my gluten intake back drastically since we pretty much went gluten free at home. So not a huge adjustment, but now knowing I can't have something makes me want it somewhat more.

Again, good luck with your son....my advice, don't put the little guy through the biopsy. Try the diet, have his blood redrawn in six to nine months. You will notice a difference within two weeks of putting him on the diet.

[chasesparents]

I hear you about the puke thing. That was my son's biggest problem before being diagnosed 1 year ago. After going gluten free, he turned into a normal active little boy, and gained all his weight back almost immediately. He was 18 months and not walking yet, within 4 days of the gluten free diet he was walking. I was SO happy. Start the gluten free diet now and get him back to normal, you will notice results quicker then you think.

My son had the biopsy first and the blood tests second. If we had done the blood test first and it was confirmed positive, I would have never put my son through the biopsy, it was so hard on him not to mention me and my husband. This is MY personal opinion.

[Nic]

My son was diagnosed last year at 4 years old first with the blood and then the biopsy. The biopsy was not a big deal. He handled it well and since I was so anxious for a diagnosis, I was willing to do anything. But, the biopsy actually became more of a concern because it did not confirm Celiac even though his blood was through the roof. They said nagative because the villi were intact. The ped. gi was so shocked that he did not believe the diagnosis and sent it out to Columbia University in NY. They gave him the positive diagnosis due to lymphocytes in the biopsy. Anyway, having this confusion with the biopsy caused me to doubt the diagnosis. I was afraid I had him gluten-free for nothing. I am glad to hear so many of you confident with the blood diagnosis.

[amandasMom]

Hi all - We are still thinking about whether or not to put our son through the biopsy. I am the type who needs absolute confirmation of things, BUT I can also put this aside if the biopsy really isn't necessary. He's been a pretty sick guy for a few weeks now and has lost almost 10% of his weight in 2 ½ weeks. I just want to get him feeling better ASAP (and I'm pretty darn sick of cleaning up puke!).

Also, are there any parents here in VT, NH, MA who considered Children's Hospital at Dartmouth vs. Boston Children's Hospital?

Thanks and I'm looking forward to getting to know some of you over the long haul.

Heidi

Hey Heidi,

My 9 year-old daughter was just diagnosed in January, so I feel like I know exactly where you're at! The biopsy decision was a tough one for us as well. We went ahead with it because it's hard to ask a kid to go gluten free if that wasn't really the root cause of her issues. Birthday parties are hard, schools have all kinds of functions that are food related. Granted, they are wonderful at accomodating our needs, but she always feels a bit left out. So we did it. It was hard, but it gave us proof positive that this was her issue and we won't be temtped to let her have "a piece of cake, just this once..." because there was a grey area. We live in southern NH and we went with MGH Pediatric Gastroenterology because we had heard from many parents and our doc that they were happier with them than Children's. We have been very happy with this decision. She had her biopsy 3 weeks ago and I could not have asked for a better experience. (Considering what we were doing...a child's surgery is never easy...) I wish you and your little guy the best...

Tracey