Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Can I Have Some Help With Kiddos? Lonnnggg.


bananabellesmom

Recommended Posts

bananabellesmom Newbie

Hi!! I am a long time lurker... and have a few questions.

I have celiac, been gluten-free for 5 years. My endo was neg, cause I was seen by a witch doctor (LOL) who just diagnosed me with a nervous tummy and didn't believe me, so I went off gluten for 6 months THEN they tested me. He told me to go back on, but I refused, cause I felt so much better!

Anywho, I have a 5 year old. She is gassy, has asthma, she is heavier (off the charts on height AND weight)... Ped GI tested her with a blood test, said her levels were high on this test, but it wasn't a very good test, she is ok... no celiac. HUH?

My 2 1/2 year old. Not gained but one pound in 8 months, she is anemic, hair loss, constipation (mirilax 2 capfuls a day per dr's order).... she is dropping percentiles. She has been tested and her IgA was low, so we saw an immunologist, who told me these tests are not accurate for under 5's. She was tested for celiac via blood and came back negative.

I am frusterated. So, I took my 2 year old off gluten, she is a week off it now. I am wondering about my 5 year old.

I never knew constipation and being heavier WAS a sympton of celiac....

any ideas or more offerings for when I go to the ped in 2 weeks?


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



Celiac.com Sponsor (A8-M):



Mizzo Enthusiast

Hi,

My 6 yr olds only symptoms were constipation and belly pains and she is in the 98th percentile for ht and wt also. So yes the Celiac symptoms are varied.

Our GI was running a battery of blood tests which was how we were diagnosed (the constipation was going on it's year and half mark). Then she was scoped.

If you really want the scope done which can show more accurate results you need to stress your position with the Dr. Even if you have to 'EXAGGERATE' your anxiety over it, to get the test ordered and covered by insurance.

Good luck!

missy'smom Collaborator

Yes, advocate for yourself. Some docs don't understand the tests even if the positive is staring them right in the face. Last time I heard,a positive was a positive no question, where the blood tests fail is with false negatives. So if your kiddo's was high, that's significant.

As for constipation, that is quite common. I get C. lots of inflamation and distended abdomen. Even though I had urgent loose stools every am after I woke up, things were generally backed up most of the time. Sounds like a strange contradiction but true. Now, when I avoid all the stuff that my body doesn't like, I have 3 well formed BM's a day. Sorry if TMI.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - KCGirly posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Symptoms and trying to figure this out

    2. - emily 1 replied to emily 1's topic in Coping with Celiac Disease
      5

      Black Pepper Reactions

    3. - Barcino replied to Onemoreceliac's topic in Related Issues & Disorders
      17

      Chronic duodenitis and gastritis post diagnose

    4. - trents replied to emily 1's topic in Coping with Celiac Disease
      5

      Black Pepper Reactions

    5. - knitty kitty replied to dlaino's topic in Coping with Celiac Disease
      1

      Coping with celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,890
    • Most Online (within 30 mins)
      7,748

    Anita Brown
    Newest Member
    Anita Brown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • KCGirly
      Back in September I started Semaglutide for weight loss. Shortly after starting I started having stomach issues - vomiting, diarrhea, red itchy palms and elevated heart rate.  I would have The episodes were every two weeks or so.  I stopped taking the semaglutide, but continued to have episodes.  GP ran bloodwork all normal, including celiac.  Ordered a stomach emptying test it was normal too.  The itchy palms stumped him.  So he ordered blood allergy test all came back normal no allergies. He had me go gluten free 11/29.  Finally got into a GI doc on 12/16.  She wanted me to reintroduce gluten back in my diet on 12/23 and then have scope on 1/8.  Well, 5 days in with gluten, I had an episode. I’m not sure I can keep eating gluten for 10 more days.  I have PTSD thinking about possibly having an episode(s) again.  Anyone going through this? Or have thoughts/suggestions?
    • emily 1
      Very helpful. Oh yes, I am quite fastidious about not falling off the diet. It's just that the list of things I must add to the restrictions seems to grow.   
    • Barcino
      I know this post is old but was wondering if you ever resolved this. My son is in the same situation. Villi healed but gastritis / duodenitis remain and calprotectin elevated. Now testing for crohns which I am freaking out about. 
    • trents
      I did a little research and one kind of aphthous ulcer (aka, canker sore) is the Herpetiform canker sore. It is well-known that celiac disease can cause a skin rash known as herpetiformis dermatitis. I can't help but wonder if there is a connection. Celiac disease is also listed in this article as a cause for canker sores: https://www.mayoclinic.org/diseases-conditions/canker-sore/symptoms-causes/syc-20370615 Are you observing a strict gluten free diet? You might also look into reducing iodine consumption as that is known to help with herpetiformis dermatitis. Perhaps it will help with your canker sores as well. 
    • knitty kitty
      Do you wear an M-95 mask left over from the pandemic when you handle flour? Do you eat out in restaurants? Do you take vitamins?  
×
×
  • Create New...