Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Help! - Biopsy Preparation
0

11 posts in this topic

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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".

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,667
    • Total Posts
      921,670
  • Topics

  • Posts

    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,665
    • Most Online
      3,093

    Newest Member
    tridoc927
    Joined