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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to colinukcoeliac's topic in Gluten-Free Restaurants
      3

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they...
    2. Scott Adams
      - Scott Adams replied to colinukcoeliac's topic in Gluten-Free Restaurants
      3

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      This is a very common source of frustration within the celiac community. Many restaurants, including large chain restaurants, now offer a "gluten-free" menu, or mark items on their menu as gluten-free. Some of them then include a standard CYA disclaimer like what you experienced--that they can't guarantee your food will be gluten-free. Should they even bother...
    3. Scott Adams
      - Scott Adams replied to Colleen H's topic in Coping with Celiac Disease
      4

      Barilla gluten free pasta

      That is a very old study that concludes "Hypothetically, maize prolamins could be harmful for a very limited subgroup of CD patients", and I've not seen any substantive studies that support the idea that corn would be a risk for celiacs, although some people with celiac disease could have a separate intolerance to it, just like those without celiac disease...
    4. knitty kitty
      - knitty kitty commented on Scott Adams's article in Latest Research
      2

      Do Severe Symptoms at Celiac Diagnosis Predict Long-Term Health? (+Video)

      I agree, @Flash1970, I've found a grain free diet more beneficial, too. I like the Autoimmune Protocol diet, a paleo diet, which removes potential problematic foods while healing after diagnosis, then can be expanded and easily maintained long term.
    5. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      33

      Insomnia help

      @cristiana, It's the same here, doctors check just Vitamin D and B12 routinely. The blood tests for other B vitamins are so inaccurate, or expensive and time consuming, doctors tend to gloss over their importance. B vitamins are water soluble and easily excreted in urine. Some people need to be careful with Pyridoxine B6 because they can store...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,477
    • Most Online (within 30 mins)
      7,748
    Matt Johnston
    Newest Member
    Matt Johnston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By trents · Posted

      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they are likely cooked and prepared along with gluten containing foods. They are just not set up to offer a dedicated gluten free cooking, preparation and handling environment. There simply isn't space for it and it would not be cost effective. And I think you probably realize that restaurants operate on a thin margin of profit. As the food industry has become more aware of celiac disease and the issue of cross contamination I have noticed that some eateries that used to offer "gluten free" menu items not have changed their terminology to "low gluten" to reflect the possibility of cross contamination.  I would have to say that I appreciate the openness and honesty of the response you got from your email inquiry. It also needs to be said that the degree of cross contamination happening in that eatery may still allow the food they advertise as gluten free to meet the regulatory standards of gluten free advertising which, in the USA is not more than 20ppm of gluten. And that is acceptable for most celiacs and those who are gluten sensitive. Perhaps you might suggest to the eatery that they add a disclaimer about cross contamination to the menu itself.
    • Scott Adams
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By Scott Adams · Posted

      This is a very common source of frustration within the celiac community. Many restaurants, including large chain restaurants, now offer a "gluten-free" menu, or mark items on their menu as gluten-free. Some of them then include a standard CYA disclaimer like what you experienced--that they can't guarantee your food will be gluten-free. Should they even bother at all? This is a good question, and if they can't actually deliver gluten-free food, should they even be legally allowed to make any claims around it?  Personally I view a gluten-free menu as a basic guide that can help me order, but I still explain that I really have celiac disease and need my food to be gluten-free. Then I take some AN-PEP enzymes when my food arrives just in case there may be contamination. So far this has worked for me, and for others here. It is frustrating that ordering off a gluten-free menu doesn't mean it's actually safe, however, I do feel somewhat thankful that it does at least signal an awareness on their part, and an attempt to provide safe food. For legal reasons they likely need to add the disclaimer, but it may also be necessary because on a busy night, who knows what could happen?
    • Scott Adams
      Barilla gluten free pasta

      By Scott Adams · Posted

      That is a very old study that concludes "Hypothetically, maize prolamins could be harmful for a very limited subgroup of CD patients", and I've not seen any substantive studies that support the idea that corn would be a risk for celiacs, although some people with celiac disease could have a separate intolerance to it, just like those without celiac disease might have corn intolerance.
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @cristiana,  It's the same here, doctors check just Vitamin D and B12 routinely.  The blood tests for other B vitamins are so inaccurate, or expensive and time consuming, doctors tend to gloss over their importance.   B vitamins are water soluble and easily excreted in urine.  Some people need to be careful with Pyridoxine B6 because they can store it longer than most due to genetics.  A symptom of Pyridoxine B6 deficiency is peripheral neuropathy.  Taking Pyridoxine B6 will relieve the neuropathy, but excess Pyridoxine can also cause peripheral neuropathy.  So, if neuropathy symptoms return, stop taking the Pyridoxine and it will resolve quickly as the excess Pyridoxine is used.  But the body still needs the other B vitamins, so taking them separately without Pyridoxine can be an option.   If one is low in Vitamin D, one may also be low in the other fat soluble vitamins, A, E, and K.  Vitamin K is important to bone and circulatory  health.  Vitamin A helps improve the health of the intestine, eyes, skin and other mucus membranes.  Vitamin E helps our immune system stay healthy.   Important minerals, iron, magnesium and calcium, as well as a dozen or so trace minerals are important, too.  They need the B vitamins to be utilized, too.   Our gluten free diets can be low in B vitamins.  Our absorption can be affected for many years while we're healing.  Supplementing with B vitamins boosts our absorption and helps our bodies and our brains function at optimal levels.   Hope this helps!
    • Wheatwacked
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By Wheatwacked · Posted

      Welcome to the forum @colinukcoeliac. Letting them know that they lost a customer because they could not satisfy cross contamination needs may incline them to fix that problem.  It was good of tnem to alert you.  The more they know...
×
×
  • 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.