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

Help! - Biopsy Preparation

Taryn's Mom

Recommended Posts

Taryn's Mom Newbie
Taryn's Mom
Posted

Hello another newbie here. My niece was biopsy confirmed celiac three years ago at age of two years. My just turned four year old daughter has been having stomach issues, complaining of "yucky tummy" and waking up in the middle of the night screaming. Not consistently and I wasn't tracking food but given my niece's diagnosis when I had enough of her complaints and screaming I took her to a medicentre and requested bloog tests including ATTG. Less than a week later her ATTG result came back 1260. Took her to my son's doctor Monday and he ordered more blood tests including ATTG and iron. Her second ATTG test came back 1270 but her iron was only slightly low at 0.13 (normal is .15 according to the doctor). My niece was severly anemic at the time of her biopsy. Today the GI nurse called with an opportunity to have the biopsy Monday due to a cancellation. When I look closely at my daughter's eating habits the past month, they have actually changed and she has been eating less gluten containing products. Now I am concerned that she might not be ingesting enough gluten for an accurate diagnosis with the biopsy on Monday. How much gluten does she need to eat every day before the biopsy? If I feed her lots of wheat between today and Monday will it increase the chance of a positive biopsy?

Also, should I tell her what's happening Monday? I have pictures of my niece in the hospital that I could show her. If I tell her, what should I say?

What if the biopsy is negative? Does anyone know why her ATTG would be so high if it is not celiac?

Thank you for any insight and your patience!

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

Celiac.com Sponsor (A8-M):


Grace'smom Explorer
Grace'smom
Posted

Hello another newbie here. My niece was biopsy confirmed celiac three years ago at age of two years. My just turned four year old daughter has been having stomach issues, complaining of "yucky tummy" and waking up in the middle of the night screaming. Not consistently and I wasn't tracking food but given my niece's diagnosis when I had enough of her complaints and screaming I took her to a medicentre and requested bloog tests including ATTG. Less than a week later her ATTG result came back 1260. Took her to my son's doctor Monday and he ordered more blood tests including ATTG and iron. Her second ATTG test came back 1270 but her iron was only slightly low at 0.13 (normal is .15 according to the doctor). My niece was severly anemic at the time of her biopsy. Today the GI nurse called with an opportunity to have the biopsy Monday due to a cancellation. When I look closely at my daughter's eating habits the past month, they have actually changed and she has been eating less gluten containing products. Now I am concerned that she might not be ingesting enough gluten for an accurate diagnosis with the biopsy on Monday. How much gluten does she need to eat every day before the biopsy? If I feed her lots of wheat between today and Monday will it increase the chance of a positive biopsy?

Also, should I tell her what's happening Monday? I have pictures of my niece in the hospital that I could show her. If I tell her, what should I say?

What if the biopsy is negative? Does anyone know why her ATTG would be so high if it is not celiac?

Thank you for any insight and your patience!

Grace'smom Explorer
Grace'smom
Posted

Taryn's mom

I just saw your post this morning, and felt bad you didn't have any responses..my guess is that is becz there is no clear answer here. Yes, a child should be eating gluten for at least a cpl mos. to get an accurate biopsy. I don't know if heavily glutening her prior to one would give you an optimum result. My advice would be to consult with the GI and nurse, and see what they say. Secondly, I waited until the day before my child's biopsy and just told her they were checking her tummy out at the hospital the next day and that she'd be with me and her dad, and it would all be ok. I kept it very simple, knowing she'd be going to sleep w/the mask even before an IV was inserted. She did really well, the hospital had toys/games and stickers, etc beforehand in the pre op area to distract her. I think today may be your surgery date so this may be too late. Good luck with everything and let us know how you make out. Emily

Taryn's Mom Newbie
Taryn's Mom
Posted
  • Author

Taryn's mom

I just saw your post this morning, and felt bad you didn't have any responses..my guess is that is becz there is no clear answer here. Yes, a child should be eating gluten for at least a cpl mos. to get an accurate biopsy. I don't know if heavily glutening her prior to one would give you an optimum result. My advice would be to consult with the GI and nurse, and see what they say. Secondly, I waited until the day before my child's biopsy and just told her they were checking her tummy out at the hospital the next day and that she'd be with me and her dad, and it would all be ok. I kept it very simple, knowing she'd be going to sleep w/the mask even before an IV was inserted. She did really well, the hospital had toys/games and stickers, etc beforehand in the pre op area to distract her. I think today may be your surgery date so this may be too late. Good luck with everything and let us know how you make out. Emily

Thank you for the response Emily. Her biopsy went well. Looking through the scope the doctor said that it looked fine (not positive), but said that could change with the official biopsy result in 5 - 10 days. The GI did feel that either way, we need to remove Gluten from her diet with her ATTG scores as high as they were (1260 & 1270) and then recheck to see if the ATTG scores drop after a gluten free diet is implemented. He mentioned that it may be "early celiac disease". Any advise or thoughts, I'd love to hear them. Should we change her diet regardless of the biospy results? Has anyone had the initial look appear fine and the biospy results confirm a celiac diagnosis?

Thanks!

scarlett77 Apprentice
scarlett77
Posted

Thank you for the response Emily. Her biopsy went well. Looking through the scope the doctor said that it looked fine (not positive), but said that could change with the official biopsy result in 5 - 10 days. The GI did feel that either way, we need to remove Gluten from her diet with her ATTG scores as high as they were (1260 & 1270) and then recheck to see if the ATTG scores drop after a gluten free diet is implemented. He mentioned that it may be "early celiac disease". Any advise or thoughts, I'd love to hear them. Should we change her diet regardless of the biospy results? Has anyone had the initial look appear fine and the biospy results confirm a celiac diagnosis?

Thanks!

If your GI suggests that she should be off gluten regardless of the biopsy results then I would go with that advice. Our GI said that things looked fine when she was in there, but the results ended up being positive. She already had a strong suspicion based on the blood results that my son had Celiac Disease so she was not deterred by what she "saw".

MomHeather Newbie
MomHeather
Posted

My son's endoscopy looked fine, but the biopsy was positive for early celiac disease. It is such a patchy disease that it can be hard to see, which is why they do the biopsy. I waited for the doctor's recommendation and then went gluten free just over a month ago. We are still adjusting but after the first overwhelming couple of weeks we are doing just fine.

Taryn's Mom Newbie
Taryn's Mom
Posted
  • Author

If your GI suggests that she should be off gluten regardless of the biopsy results then I would go with that advice. Our GI said that things looked fine when she was in there, but the results ended up being positive. She already had a strong suspicion based on the blood results that my son had Celiac Disease so she was not deterred by what she "saw".

Thank you so much! Can I ask what in his blood work specifically made her feel it was Celiac Disease? Waiting for the biopsy results is mentally exhausting!

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

Celiac.com Sponsor (A8-M):


scarlett77 Apprentice
scarlett77
Posted

Thank you so much! Can I ask what in his blood work specifically made her feel it was Celiac Disease? Waiting for the biopsy results is mentally exhausting!

I can't remember the specific levels but she looked at the levels IgA anti-gliadin antibodies, IgA anti-tissue transglutaminase, and Deamidated gliadin peptide antibody. Those levels were supposedly consistent with Celiac along with the fact that his iron levels were extremely low and pointed to malabsorption which is pretty common in Celiac. She was pretty sure based on those tests and his growth chart. The endoscopy was for the concrete diagnosis. Luckily we didn't have to wait long for our results...she called us the next afternoon. I hope you get your results sooner than later. I know how nerve wracking this can be on us parents.

Taryn's Mom Newbie
Taryn's Mom
Posted
  • Author

Sadly I am still waiting on the biopsy results. Nurse figures I will have them Monday. Does anyone know if there is any other possible explaination for why the ATTG test results would be so high (1260 and 1270)? Normal range is 0-30. I don't know what to do!

Taryn's Mom Newbie
Taryn's Mom
Posted
  • Author

We received the biopsy results today. Total vilious attrophy. I guess that puts to rest whether we go gluten-free or not. It's been sad actually this past weekend. I went grocery shopping with her and all I had to tell her was something made her tummy hurt and she wouldn't even ask for it a second time.

Hard to believe that this all started at a medicentre on September 12th.

mushroom Proficient
mushroom
Posted

I am glad you got a solid diagnosis. Sounds like she is a smart little girl and will have no trouble avoiding anything she knows has gluten in it :)

Archived

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

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


  • Member Statistics

    • Total Members
      131,688
    • Most Online (within 30 mins)
      7,748
    sandyebel
    Newest Member
    sandyebel
    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
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • 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.    
×
×
  • 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.