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

Help With Symptoms

mommaspeikes

Recommended Posts

mommaspeikes Newbie
mommaspeikes
Posted

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.

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

Celiac.com Sponsor (A8-M):


w8in4dave Community Regular
w8in4dave
Posted

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 .... 

mommaspeikes Newbie
mommaspeikes
Posted
  • Author

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.

mommaspeikes Newbie
mommaspeikes
Posted
  • Author

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?!?

nvsmom Community Regular
nvsmom
Posted

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!

1desperateladysaved Proficient
1desperateladysaved
Posted

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?

mommaspeikes Newbie
mommaspeikes
Posted
  • Author

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.

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

Celiac.com Sponsor (A8-M):


w8in4dave Community Regular
w8in4dave
Posted

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

Archived

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

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


  • Member Statistics

    • Total Members
      128,390
    • Most Online (within 30 mins)
      7,748
    Ozz lock
    Newest Member
    Ozz lock
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Oats gluten free?

      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
×
×
  • Create New...