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

Gastro Appt< Help


BemLmom3

Recommended Posts

BemLmom3 Apprentice

I need some advice please!!!! First off, how long for RAST results to come back and how accurate are they? Second, my almost 4 yr old daughter had her appt with Gastro today. They are doing RAST and claim she needs the biopsy and blood tests after a month long gluten challenge, she has been strictly gluten-free for 3 weeks and she should of gained something in 3 weeks?????? Okay so if I already know she has a gluten intolerance whats the point of the tests and month long torture. Also are they even accurate in a 4yr old???? The most important issue right now is her weight gain. Once she went gluten-free all other symptoms almost immediately went away. How long before I see a true wight gain? Thanks for any help, I as a mom want to do whats best for my kid, like everyone else here.

Sharon


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



Celiac.com Sponsor (A8-M):



Sailing Girl Apprentice

Hi Sharon,

Blood tests and biopsies are *extremely* unreliable in young children and will be even more unreliable in your daughter since she's been off gluten for a few weeks already. IMHO, there's absolutely no point in torturing her for a month and then putting her through a medical procedure that's likely to yield a false negative. You got your answer when she went gluten-free and her symptoms went away.

It took awhile for my daughter (now six) to get back on the growth curve, but it did happen eventually. She's still petite (so am I, so she comes by it naturally), but she's right in the middle of the charts now and she's not even the shortest child in her class anymore!

I know it's hard to wait, but your daughter *will* gain and she *will* grow! Keeping gluten away from her is the best thing you can do for her.

Jane

fkewatson Rookie

Hi - My 4 year old son had two Celiac blood panels come back normal, 1 normal RAST IgE blood test and a normal genetic Celiac panel...normal for Celiac, that is. Upon further review from an HLA expert, it was further interpreted as a genetic profile for gluten intolerance (DQ2 & DQ6). He has since had an allergist perform skin testing for all foods and he reacted with the wheat. So testing is not very reliable. We did not do the scope. I figured that if we scoped and it showed damage, we go on the diet. If we scope and it did not show damage, we had to try the diet, anyway, to see if he improved clinically.

So we went on the diet about 17 weeks ago. Three weeks usually isn't enough time. It took 11 weeks to begin to see any improvement with my son. I know this is going to be life-long for him, and that's OK. It does get easier. I remember the first 3 weeks feeling like 3 months.

RAST testing results for us took about 2 weeks to be returned. But please don't hang your hat on RAST IgE testing. If your child is improving clinically, you have your answer.

ryebaby0 Enthusiast

RAST testing is more like a arrow pointing in a direction than a street sign with a name, if you get my drift. You can have an elevated RAST result and have no clinical symptoms (and are therefore not considered allergic); allergists usually rely on reactions more than test results. My son RAST-tested positive for eggs (while being tested for a bazillion other things inpatient) and the first question was "does he react to them?" . 3 years later when we wanted to see if he was still allergic, his allergist declined repeating the RAST test and opted for a gradual, controlled re-introduction. He doesn't react to eggs anymore, at all, and the doctors say a RAST test wouldn't really tell them anything they don't already know.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,560
    • Most Online (within 30 mins)
      7,748

    kristenrachelle
    Newest Member
    kristenrachelle
    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

    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • 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.