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Help! - Biopsy Preparation

Taryn's Mom

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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!

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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!

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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 :)

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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