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

Daughter biopsy today!

Jules22

Recommended Posts

Jules22 Apprentice
Jules22
Posted

So my type 1 daughter had her biopsy today and the gi afterwards noticed some redness/inflammation (gastritis?) but also saw the villi.  I guess I was expecting that with her blood test result of her transglutinminase ttg iga of over 100 that she would definitely see some damage.  Her symptoms seem to be ramping up as well.  She took multiple biopsies in several locations and now we wait.  Do you think that there is a chance that with a very positive blood test result she could have a negative biopsy?  My daughter was saying that she would like the positive biopsy to know for sure and to make it easier to stick to being gluten free forever. 

 

This is really hard waiting

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I hope you don't have to wait too long for the results. A false negative is always possible since we have a lot of intestine but it sounds like you have a good doctor who took lots of biopsies.  Since she had a high positive it would be a good idea for her to do the diet strictly for a few months no matter the results. I hope you get some clear answers and that she is feeling better soon.

cyclinglady Grand Master
cyclinglady
Posted

My GI told me that everything looked great visually (endoscopy), but my biopsies revealed moderate to severe intestinal damage.  ☹️  You just have to wait for the pathologist's report.  

Jules22 Apprentice
Jules22
Posted
  • Author

Thanks for the responses raven and cyclinglady!  I guess we just have to wait.  Is it wrong that I want there to be no question that its celiac?  She has had so many symptoms for awhile now--seemingly increasing--but I want there to be no question in her mind that she needs to be gluten-free--you know?

For now we are working on eating gluten-free but I haven't really tackled the whole cross-contamination thing yet and looking into my freezer, fridge and pantry I have a decent amount of gluten that the rest of us will eat.  Then I guess I'll decide how gluten-free the rest of us should be.

On a side note--the gi ran a bunch of tests prior to the biopsy--I haven't seen the results--but they mentioned over the phone that her white blood cells were high--maybe due to celiac?

 

 

cyclinglady Grand Master
cyclinglady
Posted

I know I needed the confirmation.  My hubby went gluten free per the very poor advice from my allergist and his GP.   It worked, but we really do not know if he has celiac disease.  He refuses to do a gluten challenge and I do not blame him.  We do know that gluten makes him sick.  He has been gluten free for 16 years.  

So, when my GI suspected celiac disease, I could not believe it.  I had no tummy issues at the time, but was anemic.  Had been my whole life and it was blamed on a genetic anemia and menstruation.  I knew what being gluten free meant and I did not want to have celiac disease.  But,   I got positives  on the DGP and my biopsy.    Nothing like seeing something in writing.  I showed that to my extended family who was in denial as well.  

I had a shared household with hubby all those years.  But after my diagnosis and the fact my kid started making things in the kitchen, we all went Gluten Free.  Great kid, but I could not trust her with my health!  If you DD has small siblings, consider all going gluten free.  They can eat gluten outside of the house.  That is what my kid does.  

Jules22 Apprentice
Jules22
Posted
  • Author

Does a biopsy coming in quick mean anything?  My daughter's GI called today to say that the results are in and asked if she could come in tomorrow---sadly she is working right now and scheduled to work tomorrow and I didn't think I could make that decision for her!  But of course I'm anxious to find out the results--and we weren't scheduled with the GI until next Friday!

 

Also, I came across a video online by a Dr. David Johnson who was talking about celiac biopsy protocols and he said that in a group of people the only atrophy that is found is at the duodenal bulb.  And that should always be a place to be biopsied--along with others.  Looking at the sheet I was given after her procedure--it was noted that she had possible erythematous mucosa at the duodenal bulb but no biopsies were listed as taken.  Other areas had the mucosa found and biopsies there were done.  Several in other areas.  Does this mean that her biopsy might not have been done correctly?

This is such a frustrating diagnosis--and I just need to find out to move forward.

cyclinglady Grand Master
cyclinglady
Posted

This is beyond my capabilities as I do not wear a white coat.  Best to talk to the GI.  

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

Celiac.com Sponsor (A8-M):


Jules22 Apprentice
Jules22
Posted
  • Author

Thanks--I understand.  I guess I have never been a very patient person--Lol!

kareng Grand Master
kareng
Posted
29 minutes ago, Jules22 said:

Does a biopsy coming in quick mean anything?  My daughter's GI called today to say that the results are in and asked if she could come in tomorrow---sadly she is working right now and scheduled to work tomorrow and I didn't think I could make that decision for her!  But of course I'm anxious to find out the results--and we weren't scheduled with the GI until next Friday!

 

Also, I came across a video online by a Dr. David Johnson who was talking about celiac biopsy protocols and he said that in a group of people the only atrophy that is found is at the duodenal bulb.  And that should always be a place to be biopsied--along with others.  Looking at the sheet I was given after her procedure--it was noted that she had possible erythematous mucosa at the duodenal bulb but no biopsies were listed as taken.  Other areas had the mucosa found and biopsies there were done.  Several in other areas.  Does this mean that her biopsy might not have been done correctly?

This is such a frustrating diagnosis--and I just need to find out to move forward.

Probably just means that the lab isn't busy.  Not many people scheduling elective procedures at the end of July.

Jules22 Apprentice
Jules22
Posted
  • Author

That makes sense--got to stop worrying and thinking about this.  It will be what it will be.

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 GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers?
    2. Scott Adams
      - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger...
    3. Wheatwacked
      - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide. Both linked to cancers. Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers. A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor. Sourdough...
    4. jenniber
      - jenniber replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      5

      Celiac support is hard to find

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    5. RMJ
      - RMJ replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      need help understanding testing result for Naked Nutrition Creatine please

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means. However, the way the result is presented does look like it is below the limit of what their test can measure, so that is good.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,117
    • Most Online (within 30 mins)
      7,748
    Michele W
    Newest Member
    Michele W
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Blood Test for Celiac wheat type matters?

      By trents · Posted

      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers? 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger both hyperthyroidism or hypothyroidism, worsen autoimmune thyroid diseases like Hashimoto's, and lead to goiter. Other side effects include gastrointestinal distress. The risk is highest for individuals with pre-existing thyroid conditions, and while dietary iodine rarely reaches toxic levels, unsupervised high-dose supplementation is dangerous and should only be undertaken with medical guidance to avoid serious complications. It's best to check with your doctor before supplementing iodine.
    • Wheatwacked
      Blood Test for Celiac wheat type matters?

      By Wheatwacked · Posted

      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      Celiac support is hard to find

      By jenniber · Posted

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      need help understanding testing result for Naked Nutrition Creatine please

      By RMJ · Posted

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
×
×
  • 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.