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

New & Overwhelmed Where Do I Start?


Hopefulmama

Recommended Posts

Hopefulmama Apprentice

A little background info.-this could get long. I just found this site last night after 2 years of desperation. My daughter is 2 1/2 years old. She has never slept well-had colic, still wakes several times/night, and has bad night terrors that are starting to occur almost every night. The more I read, the more symtoms she seems to have of celiac/gluten intolerance. She thrived with her growth until about 18 months. We stopped breast feeding at 16 months. She hasn't grown much at all since 18 months and yet she eats A LOT. She has a lot of gas, and sometimes her belly really pokes out. A few times after she played w/ Play doh she got red marks on her hands. Nothing severe, but weird. She doesn't get it every time though. Noone in our family has been diagnosed, but that doesn't mean noone has it. Lately she gets diareha about twice/week-for about 3 weeks now. She is so sleep deprived and so am I. I am expecting in a few months and would like to get this under control before the new one arrives. I am tired of seeing my daughter suffer with the night terrors. I am not sure if this is all related or not-I also don't know what is normal 2 year old behavior. I don't know how to approach this with her ped. I've read that the blood test isn't always positive-esp. when they are young. If she tests negative, my husband will not be super supportive of the diet. Shoudl I just go with the diet and forget seeing the ped.? Or what questions should I ask? I am overwhelmed and trying to swim through all of the great info. here. Can anyone point me in the right direction? Please?! Thanks so much for any help! I really need it!


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

From everything I know and have read, your daughter is in the more reliable testing stage. In addition, she would seem to have the familiar "failure to thrive," the most common symptom for young kids.

richard

LauraWass Rookie
A little background info.-this could get long. I just found this site last night after 2 years of desperation. My daughter is 2 1/2 years old. She has never slept well-had colic, still wakes several times/night, and has bad night terrors that are starting to occur almost every night. The more I read, the more symtoms she seems to have of celiac/gluten intolerance. She thrived with her growth until about 18 months. We stopped breast feeding at 16 months. She hasn't grown much at all since 18 months and yet she eats A LOT. She has a lot of gas, and sometimes her belly really pokes out. A few times after she played w/ Play doh she got red marks on her hands. Nothing severe, but weird. She doesn't get it every time though. Noone in our family has been diagnosed, but that doesn't mean noone has it. Lately she gets diareha about twice/week-for about 3 weeks now. She is so sleep deprived and so am I. I am expecting in a few months and would like to get this under control before the new one arrives. I am tired of seeing my daughter suffer with the night terrors. I am not sure if this is all related or not-I also don't know what is normal 2 year old behavior. I don't know how to approach this with her ped. I've read that the blood test isn't always positive-esp. when they are young. If she tests negative, my husband will not be super supportive of the diet. Shoudl I just go with the diet and forget seeing the ped.? Or what questions should I ask? I am overwhelmed and trying to swim through all of the great info. here. Can anyone point me in the right direction? Please?! Thanks so much for any help! I really need it!

Hi--

I would for sure ask the pediatrician for a blood test. Chances are they will be positive. If they are not, perhaps you should still push for a biopsy (that is considered the gold standard for diagnosing celiac disease). In my opinion, it would be hard for me to follow the gluten-free diet if I didn't have medical proof.

We have a 2 year old who was diagnosed about a month ago (she had some of the symptoms you listed, ie distended tummy, digestive problems, light sleeper, thrived until 18 mos, stopped nursing at 16 mos, etc) and our world has changed so much since she started the gluten-free diet. She is feeling sooo much better, smiles more, laughs more, plays more, does not ask to be picked up as often, etc.

Let me know if you have any more questions!! Good luck!! Laura

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,159
    • Most Online (within 30 mins)
      7,748

    Greymo
    Newest Member
    Greymo
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
×
×
  • 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.