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

Ugh- Son's Symptoms Returning (not Yet Diagnosed)


Melissa394

Recommended Posts

Melissa394 Newbie

I posted a few days ago w/ the details of what we've gone through over the past few weeks. My son's symptoms have been consistently the same very week for 3 weeks; he was hospitalized for 4 days at Dell Children's hospital and is under the care of a pediatric gastro doc now.

He always starts out w/ light colored loose stool. Then comes light colored diarrhea/loose stool in large amounts (he'll sit on the potty for a long time). The stool appears a bit oily. Then the vomitting starts and lasts for one day, followed by very watery/mucousy diarrhea he can't control. Diarrhea lasts another day then he's back to normal.

They've done tons and tons of testing; we are still waiting on celiac test to come back.

I've left a message with both his pediatrician and the nurse of the pediatric gastro doc. His light colored loose stool has returned and this morning he had a large bout of diarrhea. :( His belly is hurting. He's not seeing his pediatric gastro doc until Wednesday.


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



Celiac.com Sponsor (A8-M):



mom2twoangels Apprentice

Hi,

I am new here, and still waiting on my dd diagnosis, she had her scope on Friday. If I were you I would call and beg to get an earlier appt. and ask if they do think they might want to schedule a scope if they could get you on the schedule for that now before the dr see's him. I called mine and they were able to get us in a bit earlier and I was so worried about my daughters weight loss the doctor was great enough to come in early and do her scope the next day. I hope they get you in soon and you get it figured out!

Melissa394 Newbie

How did your daughter do on her scope? How long before you find out the results? It looks like we are both in the same position- waiting and worrying! How old is your daughter?

My 6 year old son had gotten down to 31 pounds the day he was hospitalized (this was after 3 weeks of off and one diarrhea/vomiting). He was 35 pounds early August. He's a tiny boy so 4 pounds is significant! By this Sunday, which was 5 days after coming home from the hospital, he was up to 34.5 with clothes (no shoes). To see his symptoms start up again is discouraging.

He has only had that one big bout of diarrhea today; he slept for 2 hours with a warm compress on his belly. He went to the grocery store with me today and ate about 1/4 pound of Boars Head ham while in the shopping cart. His appetite is normal. His pediatrician called in a prescription for Zofran for me to keep on hand if he starts vomitting.

I had left a message with the nurse at the gastric doc's office but she never called me back. That's a disappointment; I've been so spoiled with our primary pediatrician always calling back timely (or we just wait and get a nurse on the phone). :( We'll see how he does, we may be able to wait one more day.

I know I'm not supposed to keep him gluten free (he's eating breaded products) but I really think the wheat toast he ate after dinner may have done it for him. I am going to keep him off of wheat bread and stick to the unhealthy white stuff.

mom2twoangels Apprentice

Hi,

She did ok. They told us they weren't going to intubate her but they ended up doing that anyway not sure why. She was pretty grouchy upset crying for about 2 hours after - they told us that is pretty normal from the meds. She is 2 1/4. She complained of her throat hurting for 2 days or so. However she also came down with a cold on Sunday so I don't know how much that effected her. Her voice still doesn't sound right today - she normally has a very pretty voice so it is very noticeable.

She was perfectly fine until 6 weeks ago and we started with vomitting, constipation, refusing to eat. Several visits to the Peds office etc.

Luckily the results came back quickly, her GI Dr. called last night and she does have celiac. So the waiting is over for me and I hope it is for you very soon!

I know how you feel on having to keep giving them wheat once you suspect a problem. That last day when I gave her a piece of bread I felt like I was giving her poison. But a strange part of me was also sad she wouldn't be able to have it again. She does miss things she asked for pizza for breakfast today.

The wonderful news is, if this is what your son has, hopefully once you get him off of it he will recover quickly. We are only going on day 5 of no gluten and even though she is still super skinny with big circles under her eyes and her tummy distention has only gone down a little - she is acting much happier and eating. She hasn't wanted to eat hardly anything for the last 2-3 weeks.

Melissa394 Newbie

That is wonderful news your daughter is eating again! Did her bowels return to normal yet? I imagine that was tough to put your 2 year old through that, but at least you know what she has and can fix it! I've read that Celiac kids recover quickly, gain weight, and can have catch up growth. I hope that is the case for you.

I hope we know more at tomorrow's appt.; our blood test results should at least be in!

mom2twoangels Apprentice

Well her bowels are changing I'll just leave the description at that I wouldn't say normal yet but different.

Good luck tomorrow hopefully they help you soon!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748

    PatBurnham
    Newest Member
    PatBurnham
    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

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.