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

Is A Biopsy Really Necessary?


GDLions

Recommended Posts

GDLions Rookie

I have done some research and was wondering if a biopsy is really necessary for either of my boys.  They are 3 and 6 and we do have a family history of Celiac.  Here are their blood test results.  

Alex

Deam Iga Index 212.3

Gliadin IgA postive

Glia IgG Index 137.9

Gliadin IgG positive

TTG IgA index greater than 100

TTG IgA AB positive

Robert

Deam Iga Index 115.5

Gliadin IgA postive

Glia IgG Index 60.1

Gliadin IgG positive

TTG IgA index greater than 100

TTG IgA AB positive

 

I found this in a chat room and it got me thinking...

"With Celiac, something like 98% of people who test positive for the TTG will indeed have a positive biopsy. In this study Open Original Shared Link , 48 out of 49 people with TTG > 100 had a positive celiac biopsy. This implies that there is no point doing the biopsy when TTG is > 100. For moderate TTG levels (between 20 and 100), 50% had positive biopsies, and were recommended to "continue to undergo biopsies" until diagnosed" .

 

I would LOVE to hear your opinions.

 


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Family history and that blood test alone is enough i think for a diagnosis.

 

However, that being said, the TTG doesn't always mean that the biopsy will come back positive. Often times celiac causes patchy damage or damage that is not visible to the eye. Potential areas can be missed.

 

Mine was at a 37 (with anything 1-19 normal, 20-29 low positive, 30+ strong positive). I also had some really bad symptoms that resolved once i went gluten free and a positive test for both genes (DQ8 and DQ2).

GlutenStinks15 Explorer

I opted out of the endo and biopsy. The bloodwork was enough for me, and the fact that once I went gluten free I started to feel MUCH better.

eblue Apprentice

I didn't get the endo and biopsy. My blood test results were enough for me. Sometime I wonder exactly how much damage there is in there..but I do not wonder enough to get the endo done lol

It is up to you. Chances are, if their blood test results were positive, they have celiac. ESPECIALLY since you have a family history

EmiPark210 Contributor

Speaking as someone who had to make sure I could get accommodated for school endeavors, I would say, if eating gluten for long enough to get the biopsy is not absolutely debilitating, do it. A lot of places like to have all the possible tests done to have accommodations. I'm currently studying abroad and they asked for all my diagnosis papers to accommodate me under ADA. And here in Austria, they won't give people their tax breaks and health benefits for Celiac without a biopsy. 

 

I had a super strong positive on my blood test, but I'm not in control of my food 100% of the time because I am a college student. I was just terrified that somewhere down the line, something wouldn't be changed or accommodated because I was missing the endoscopy. I'm also a huge worry-wart so take that with a grain of salt. The test is just so much easier to do when gluten is still around than years after being gluten free. 

  • 2 weeks later...
GDLions Rookie

Speaking as someone who had to make sure I could get accommodated for school endeavors, I would say, if eating gluten for long enough to get the biopsy is not absolutely debilitating, do it. A lot of places like to have all the possible tests done to have accommodations. I'm currently studying abroad and they asked for all my diagnosis papers to accommodate me under ADA. And here in Austria, they won't give people their tax breaks and health benefits for Celiac without a biopsy. 

 

I had a super strong positive on my blood test, but I'm not in control of my food 100% of the time because I am a college student. I was just terrified that somewhere down the line, something wouldn't be changed or accommodated because I was missing the endoscopy. I'm also a huge worry-wart so take that with a grain of salt. The test is just so much easier to do when gluten is still around than years after being gluten free. 

thanks for your response....we are going to get the biopsy, largely in part of school requirements. 

1desperateladysaved Proficient

I didn't do the biopsy.  To gage my amount of damage and healing, I did nutrient tests last November.  In theory,since my nutrient levels were poor,  by now they should have gone up.  In reality, they have! 


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

Just be aware that if the damage to the intestines is patchy, it is very possible for the damage villi to be missed. that has happened to a few around here: positive tests and negative biopsy... or positive biopsy and negative blood work.  If that happens, please assume they are celiac even if the doctors don't sign off on the celiac disease diagnosis. I think it's better safe that sorry.

 

Best wishes.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,144
    • Most Online (within 30 mins)
      7,748

    Jenny0384
    Newest Member
    Jenny0384
    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

    • Jmartes71
      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
×
×
  • 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.