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 Celiac.com!
    eNewsletter
    Donate

Help With Symptoms


mommaspeikes

Recommended Posts

mommaspeikes Newbie

Hello! I'm new to this, so please forgive me if I make any errors.

I have a 5 year old son who displays the following symptoms:

- constipation

- extremely large bloated belly

- gas

- skin "itchies" aka "unexplained hives"

- tiny bottom, legs, and arms

He has been tested by blood and negative to having any food allergies.

Here is the crazy thing. When he wakes up in the morning, his belly is normal. He looks like a normal 5 year old. By evening, his tummy is HUGE! He does pass gas at night. He will wake up with a normal belly the following morning and the process repeats.

We have gone dairy free for approximately 2 weeks. I have not seen many improvements yet. Maybe I haven't given it enough time, or maybe I need to go gluten-free. Hoping someone has some experience and can offer me some advice.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



w8in4dave Community Regular

Was he tested for Celiac? Wow!! That would make any mom worry!! I'd take a pic of his belly in the AM and then in the evening and take it to your Doc! Make sure he sees the difference. I would think he may be Celiac but I am kinda thinking like alot of other people, when it comes to children, you really want to have them tested for Celiac and not just put him on the Gluten free diet. You can try the Gluten free diet for a few days and see if there is a difference .... 

Link to comment
Share on other sites
mommaspeikes Newbie

Yes, he was tested for celiac and it was NEG. it is just thr weirdest thing!! Something isn't right and I want to get to the bottom of it. I take pics all the time. I had the brilliant idea of measuring his belly first thing in the am and then at pm to get more accurate info. Guess we need to make another trip back to the GI specialist.

Link to comment
Share on other sites
mommaspeikes Newbie

I should have also mentioned, that his diet is not very well balanced. He doesn't eat many fruits, hardly any veggies, and he eats a TON of wheat bread...hmm...sure does make you wonder, huh?!?

Link to comment
Share on other sites
nvsmom Community Regular

That is EXACTLY how my stomach used to be, I would get more bloated as the day went on. :( not a good sign. I'm glad you are still looking into it.

Do you know what tests he had? These are the usual tests:

tTG IgA and tTG IgG - most popular tests with docs, not always accurate in kids

EMA igA - shows advanced damage and not often positive in kids

DGP IgA and DGP IgG - often the best test for detecting celiac disease in kids

Serum IgA

AGA IgA and AGA IgG

The first three tests indicate intestinal villi damage as seen in celiacs. The serum IgA is a control test to make sure you make enough IgA for the IgA based tests to be valid; 5% of celiacs have low IgA. The AGA tests show gliadin sensitivity in celiacs and possibly those with non-celiac gluten sensitivity (NCGS) who have the same symptoms but no villi damage.

This report has more info on pages11-12: Open Original Shared Link

I would suggest doing more testing, possibly the endoscopic biopsy. If everything comes up negative, he might be NCGS and a gluten-free trial of 3-6 months would be diagnostic. If he does have NCGS, it is just as important to eat 100% gluten-free as it will continue to negatively impact his quality of life and possibly lead to further health problems down the road. :(

Best wishes!

Link to comment
Share on other sites
1desperateladysaved Proficient

Did measuring the belly work?  Mine once increased 9 inches over night after eating pizza!  I haven't eaten it since.  Usually, mine does increase in size during the day.  When I try to measure the belly, I usually don't see much of a difference.  I am wondering how taking a picture would be?  Stand in front of a grid maybe to see better?

Link to comment
Share on other sites
mommaspeikes Newbie

2.5" bigger on the top part of his abdomen, and 2" bigger right around his belly button. Measurements were taken at 9 am today and 9 pm this evening.

Foods consumed today: French toast, hot dogs with buns, and pizza (no cheese). Still on a no dairy diet. Doesn't seem to be the culprit.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



w8in4dave Community Regular

Good luck sweetie!! I hope you find the answers!! 

Link to comment
Share on other sites

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. - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    2. - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    3. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    4. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    5. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748

    Suzi374
    Newest Member
    Suzi374
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...