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

Biopsy Or Not?

luciasmom

Recommended Posts

luciasmom Rookie
luciasmom
Posted

My 2yr old daughter (Lucia) who i highly suspect has celiac disease has an appt with a Dr (in the US) in a few weeks. I've had her on a gluten -free diet for a few months now and her symptoms have gone away. I'm expecting my 2nd baby this summer and would like to start Lucia in school. We live in a relatively small town in Mexico and celiac disease is totally unheard of, plus i don't know why but the people i've told about it just don't seem to take it too seriously...so all this makes me scared of putting Lucia in school because even though i can control the food she takes to school i can't control if she has a bite of someone else's cookie, bread, etc..

I know i can go talk to the teachers and all but i don't think they would really take care of my daughter on such a personalized level.

So what i have decided is to have her tested and see if in fact she has celiac disease and get all the doubts out of my mind once and for all. And if it turns out she does have it then we will have to accept the diagnosis and proceed with the gluten-free lifestyle we've been trying to adopt. (BTW nobody in my family or my husbands family has celiac disease as far as we know). But if not, maybe it's something else we can approach differently.

The rush to do all this is because i want to KNOW before our second baby is born and before i start thinking on school options, etc.

What is making me scared and nervous is the thought of having her on gluten filled foods for 4 weeks, and the consequences that will have on her body. But also not knowing if to proceed with a biopsy after the blood results come out.

The doctors nurse said today that if the blood results turn out positive then we wouldn't have to do the biopsy because that was proof enough of celiac disease(unless the parents wanted further confirmation), but i read on Dr. Green's book that the biopsy is the gold standard for diagnosing celiac disease. So i'm confused!!

My thoughts are that since we're basically going to make her sick for a whole month and then travel far away for the doctors' appt then we should just go ahead with the biopsy. Of course the biopsy also makes me extra nervous!!

I would appreciate your thoughts on this! Thanks!

Lucy

Sorry i made it sooooo long but english is not my first language and i have a little bit of trouble expressing myself.

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

Celiac.com Sponsor (A8-M):


spunky Contributor
spunky
Posted

Would having a diagnosis from Enterolab be possible for you?

Non-invasive, no need to eat gluten to take the test, but it is expensive and some doctors don't accept his results. He is a gastroenterologist, but has not published his findings.

Open Original Shared Link

I have no personal experience with this myself, but have read favorable things from others who have used this lab for their diagnosis.

nikki-uk Enthusiast
nikki-uk
Posted

Just to point out it would probably take longer than 4 weeks for enough damage to occur to sufficiently show up in a biopsy.

More like 8weeks (maybe longer??) on a high gluten diet and even then it might be missed :(

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,594
    • Most Online (within 30 mins)
      7,748
    kathleenconley
    Newest Member
    kathleenconley
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      How long does it take to gain weight?

      By cristiana · Posted

      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
×
×
  • 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.