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Positive Blood Test, Why Biopsy?

eileen.c

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eileen.c Newbie
eileen.c
Posted

My 10 month old daughter was tested for celiac... several of the markers came back negative, but one returned positive.

I'm meeting with the pediatric gastro doctor tomorrow, but I'm just wondering if anyone has an opinion on the necessity of putting her through a biopsy. Isn't a positive blood test fairly reliable? My pediatrican insists she needs the biopsy, too, for a definitive diagnosis, but the thought of her going through this makes me queasy.

How tough a procedure is this for an infant?

Thanks.

Eileen

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ptkds Community Regular
ptkds
Posted

My 18 m old dd tested positive w/ blood work only. I decided not to put her through the biopsy after I tested positive through blood work. Now my dd#2 has also tested positive through blood work. I feel that the blood results must be accurate for us since there are 3 positives in our family. But others may have a better answer for you.

I know that my dd would have had to have an IV which is the worst part of the biopsy. They sleep throught the rest. Waking up from anesthesia can make a child feel really confused and scared, too.

ptkds

Ursa Major Collaborator
Ursa Major
Posted

Especially with infants, I see no need for a biopsy (my own opinion, of course). If the bloodwork is positive, and she has a positive dietary response, that would be enough for most (reasonable) doctors to at least diagnose her with gluten intolerance. The most valid test is trying the diet, no matter what doctors say.

Doctors still claim that the biopsy is the gold standard for diagnosing celiac disease. Really, it's the OLD standard, as that idea is fifty years old, and outdated. Too bad most doctors haven't caught onto that yet.

So, you're right to question the need for a biopsy. I personally wouldn't put my baby through that. Especially because it's very unreliable with young children anyway, and a false negative is very likely. But of course, it's your choice.

Guest cassidy
Guest cassidy
Posted

If the bloodwork is positive, then she has celiac. Some doctors insist on a biopsy, but the results of the biopsy aren't going to change the positive blood work. Also, if she feels better on the diet, that is a sure way to confirm the blood test results.

As far as treating her, you don't need a biopsy to go gluten-free, so if you are ok with not getting one, then I wouldn't do it. I'm sure your child has been through enough being sick that she would appreciate not having to go through that.

Guest nini
Guest nini
Posted

the biopsy won't tell you anything you don't already know. The blood test was positive, (yes even one marker is enough to be positive). I did not put my daughter through a biopsy and my Dr. said the biopsy was not necessary for me because my blood work was positive. As Ursula said the biopsy is the "OLD standard" of dx (love that!) And most Dr.s haven't caught on yet that this kind of thinking is outdated and MISSES so many pre celiacs that are def. Gluten Intolerant. The biopsy is only looking for confirmed damage, WOULD YOU WAIT UNTIL YOU HAD FULL BLOWN HEART DISEASE TO CHANGE YOUR LIFE IF YOU HAD THE PRECURSORS TO IT? NO! You would do something about it. The idea that Dr.s want to wait until there is confirmed damage with Celiac before doing anything about it is just insane. Isn't preventative medicine so much better? Positive dietary response along with positive blood test results will be your most valid diagnostic tool (the blood test can only screen for it) the diet will confirm the dx. If the diet helps then viola! You have your answer.

Jestgar Rising Star
Jestgar
Posted
Some doctors insist on a biopsy....

All this is doing is proving something to the doctor. If you need the doctor to do this, then do it. If you don't need it, don't do it.

You are in charge.

eileen.c Newbie
eileen.c
Posted
  • Author

Thanks for all the replies. The doctor told me that he considers the celiac blood test for children under 5 to be very unreliable and so he's strongly urging the biopsy. (If it's so unreliable, why do it??)

I might allow the biopsy just to rule out anything in addition to celiac... he mentioned ulcerative colitis and Crohn's.

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Ursa Major Collaborator
Ursa Major
Posted
Thanks for all the replies. The doctor told me that he considers the celiac blood test for children under 5 to be very unreliable and so he's strongly urging the biopsy. (If it's so unreliable, why do it??)

I might allow the biopsy just to rule out anything in addition to celiac... he mentioned ulcerative colitis and Crohn's.

Actually, both the blood test and the biopsy are very unreliable in young children. But you don't get false positives, only false negatives.

It is highly unlikely for a baby to have Crohn's or ulcerative colitis already. Besides the fact that they are often caused by celiac disease, and usually respond well to a gluten-free diet.

Really, the diet is the absolute best test for a child that young. If she doesn't respond to the diet, you can still do the endoscopy to look for other things. Why not do the easy, non-invasive thing first?

Lisa Mentor
Lisa
Posted
Thanks for all the replies. The doctor told me that he considers the celiac blood test for children under 5 to be very unreliable and so he's strongly urging the biopsy. (If it's so unreliable, why do it??)

I might allow the biopsy just to rule out anything in addition to celiac... he mentioned ulcerative colitis and Crohn's.

Just a little input from me..... An endoscopy test for celiac is NOT the same to test for Crohn's.

Chrohn's is tested through the large intestines with a colonoscopy, Celiac is tested in the small intestines through and endoscopy.

Colitis is tested through the large intestines.

If you have a positive blood test, I certainly be would be satisfied with that and begin a gluten free diet for your baby. If you do not see improvement within a months time, at that point would I pursue other testing.

You doctor is asking you to do TWO invasive test on your infant. The test is not difficult for adults, but an infant?

I know that this is a difficult decision because we want to protect, give them the best care that we can and keep them happy healthy and safe.

Good luck and I wish wellness for you and your child. :)

Guest nini
Guest nini
Posted

the biopsy won't rule out anything... it can't even rule out Celiac. Honestly, especially with a positive marker on one so young, try the diet first, if you don't have miraculous results you can pursue other testing that doesn't involve keeping your child on gluten IF it's the problem... Positive dietary response is THE MOST VALID diagnostic tool for gluten intolerance/Celiac, the biopsy can ONLY confirm it IF they find damage and many infants and children with pre celiac don't have damage yet, a lot of adults don't either... but, when you remove gluten from the diet, whoa! look out! miraculous results! There can be no other explanation!

My daughter's blood work was negative after I was positively dx'ed. And her ped. GI said she couldn't possibly have Celiac, that she "just had IBS" or toddlers diarrhea and that I needed to (get this) FEED HER MORE WHOLE WHEAT! WRONG! I got her pediatricians support on trying the diet and within DAYS I had an entirely different happier healthier child. At her last check up (her six year check up for first grade) her pediatrician was just blown away by how healthy she is, she is healthier than probably 95 % of her patients... (maybe all of them!) She said she "rarely sees a child this age, THIS healthy".

I know that standard medical protocol is to push for the biopsy, but the fact is the biopsy as gold standard methodology misses far too many gluten intolerants, pre celiacs and even celiacs. Yep, it happens, I know far too many people that have had negative biopsy year after year and continued to get sicker until one day their biopsy came back with TOTAL villous atrophy...

do what you think you have to, but I personally couldn't and wouldn't put my daughter through a biopsy. My dr. didn't even feel that one was necessary for me since my blood work was so highly positive and I responded so well to the diet.

KaitiUSA Enthusiast
KaitiUSA
Posted

I am not a fan of biopsies...they can rule celiac in but not out. I personally just went with my positive blood test...he was sure that I had it.

dahams04 Apprentice
dahams04
Posted

Just wanted to add my son had the biopsy right before his 3rd B-day. It wasnt that bad, he was just a little out of it after teh anestisia wore off. My niece (5) also had the biopsy and while in there they found another disease. ( eosonaphilic esophgitis sp?) So it can help. Go with your heart. If you feel she needs it or you need it to feel more secure I say go for it.

Nancym Enthusiast
Nancym
Posted

Here's some info about Eosinophilic Esophagitis: Open Original Shared Link

(I was curious, so I looked it up!) Basically it is food allergies causing inflammation of the esophogus.

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