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. Mmoc
      - Mmoc replied to Mmoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Blood tests low iGA 4 years later digestive issues

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results.
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Gluten free nuts

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to...
    3. trents
      - trents replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies...
    4. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted...
    5. Wheatwacked
      - Wheatwacked commented on Scott Adams's article in Latest Research
      6

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Have you had your 25(OH)D vitamin D blood level checked? Vitamin D deficiency occurs in 40 - 60% of western societies. It is even more common in Celiac Disease because of malabsorption syndrome. Appropriate intake of vitamin D or skin production from sun, increases the absorbtion rate of Calcium.and phosphorus, two minerals crucial to...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,387
    • Most Online (within 30 mins)
      7,748
    LizzieE
    Newest Member
    LizzieE
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
×
×
  • 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.