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

Positive Blood Test, Why Biopsy?

eileen.c

Recommended Posts

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

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

Celiac.com Sponsor (A8-M):


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 Really, it's the OLD standard, as that idea is fifty years old, and outdated.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.

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

Celiac.com Sponsor (A8-M):


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.

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.