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

Why Small Bowel Biopsy?

vanessa

Recommended Posts

vanessa Newbie
vanessa
Posted

My son Brandon who is five started having some strange symptoms right before Thanksgiving. When he was examined by the doctor he said I think it might be something bacterial, so here is an antibiotic. It did seem to help a little bit, but right around Christmas time the symptoms came back. After a CT scan, the primary doctor wasn't sure what was going on. I pushed for a referal to a GI doc. The GI doc looked at me as if I were crazy when I brought my son in....he said well I guess I can order a test for celiac disease, but I really don't think anything is wrong. A week later I received a phone call from the GI doc who said that his IGG and IGA tests were positive. The IGG was 22.2 when anything above 10 is strong positive. The IGA was >100, anything over 10 being a strong positive. SO....with that said, why are they wanting him to have a small bowel biopsy? Is there any other disorder or disease that would cause these tests to be "positive"? Also his fecal fat content was high....If someone could please let me know the purpose of the small bowel biopsy I would appreciate it!

He is going to see a doctor at Children's Hospital in Denver, as the GI doc he has seen really doesn't see many children. I plan on asking these questions when we go there...but I have to admit I am scared to have my child go through this! Thanks ...Vanessa

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

Celiac.com Sponsor (A8-M):


Guest Viola
Guest Viola
Posted

Hi, I know this whole thing must be frightening, especially with a child. Apparently the biopsy is still the only positive proof of Celiac disease. You could do the gluten free diet without the biopsy and basically assume Celiac Disease. However you need a postiive diagnoses for tax purposes and also to consider whether or not other family members should be tested, whether ill or not. Some Celiacs do not show any symptoms except for an iron defficiency, or another vitamin deficiency. Someday soon, we are hoping for a positive, non evasive test. We will all be better off for it!

I'm not sure if this is very helpful or not, but hang in there and let us know what happens :)

plantime Contributor
plantime
Posted

The biopsy will give an idea of how much damage has been done so far, and what you will need to expect as far as length of time to heal. If you are satisfied with the blood results, then you do not >need< the biopsy, but your doc apparently wants the biopsies to give a definite diagnosis.

plantime Contributor
plantime
Posted

Also, with a child, the doc's biopsy results will be required by schools and day cares so they can accomodate his dietary needs. It is a red-tape technicality, but they will have to have it.

tarnalberry Community Regular
tarnalberry
Posted

Since technically, the way celiac is currently defined by the medical community, it has to be determined if much damage has been done to the intestines, they have to do a biopsy. Some doctors don't adhere to this technicality, and use the blood tests to suffice as markers for damage, others require the biopsy.

As has been noted, it's still your choice - you already know she needs to be gluten-free, but a lack of biopsy results may weaken her diagnosis in the eyes of some whom you may need to believe you.

vanessa Newbie
vanessa
Posted
  • Author

Thank you so very much for your responses. It sounds like having the small bowel biopsy is just the evidence doctors want to give a definite diagnosis. Does anyone know of any other disorders/diseases that can cause the elevated IGG and IGA test results? Thanks..Vanessa

MichelleC Apprentice
MichelleC
Posted

And, Vanessa, just to try to ease your fears...my 7 and 9 year old daughter and son had scopes back in August. They both did great. No problems at all. I'm glad you're going to a Children's Hospital. They are good at taking care of both kids AND parents! :-)

BTW, Celiac was confirmed in both. I have it, too.

Michelle

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

Celiac.com Sponsor (A8-M):


ashlee's mom Rookie
ashlee's mom
Posted

I just wanted to add that my daughter had it done when she was 4-1/2 and I think she did better with it then she did with the initial blood test! One reason I am glad we went ahead and did it was so that she has proof that indeed she has this disease. I have heard that the symptoms can fade as kids hit the teen years when they are questioning everything you tell them anyway. I am hoping that if this happens for us, she at least won't have to wonder if she really has celiac disease or not. My husband also was all for the biopsy so that we would know for sure what was wrong. I used the time until the biopsy to let her eat all the pop tarts and stuff she wanted since I knew it would be the last time in her life! Then when we came home from the biopsy, she went gluten free.

Good luck!

Michelle

Boojca Apprentice
Boojca
Posted

Hi Vanessa,

My son was diagnosed in June at age 2 1/2 and the biopsy is to "conclude" that it is indeed Celiac. They will look at the damage (taking multiple samples from the small intestine bc the damage isn't always "all over") and make sure it's consistent with celiac disease. The endoscopy is no big deal, in fact it was much easier than the blood draw for my son. They knocked him out and did it...the procedure took 20 minutes...and when he woke up he wanted McDonald's and we had it and he was his crazy self all day (unfortunately...I had planned on him sleeping all day so I could too!) You will need the "conclusive" diagnosis for school...this falls into the ADA act and for 504 compliance the schools will demand this. As for taxes, I guess you might need it for that as well but I'm not sure why. For you to deduct anything in taxes your out of pocket expenses must be over 7.5% of your income, and that's pretty tough to hit! It's really the school thing that's the most important.

And for Michelle, yes, that is true. Some Celiacs have a "honeymoon period" where it seems to go away. Unfortunately it's just in a latent stage and the damage is still being done in there and it comes back!! Ugh.

Bridget

Archived

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

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


  • Member Statistics

    • Total Members
      131,666
    • Most Online (within 30 mins)
      7,748
    bailey1023
    Newest Member
    bailey1023
    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

    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.