Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What's The General Consensus On Intestinal Biospy?

celiacsmom

Recommended Posts

celiacsmom Rookie
celiacsmom
Posted

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 :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

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 Proficient
VydorScope
Posted
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. :D

elfkin Contributor
elfkin
Posted

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 Rookie
Dietcokehead
Posted

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 Explorer
skoki-mom
Posted

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 Community Regular
tarnalberry
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jeffreyd Newbie
jeffreyd
Posted

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 Rookie
chasesparents
Posted

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. :D 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 Collaborator
Nic
Posted

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 Newbie
amandasMom
Posted
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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,948
    • Most Online (within 30 mins)
      7,748
    Stephanie94
    Newest Member
    Stephanie94
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.