7 Yr Old Two Weeks Gluten Free

[Stacy0w]

I was diagnosed with celiac in December. We had him tested a few months ago and it came back later, but they didn't run the entire panel like I asked. Since birth he's been a fussy mess. They said colic, but meds didn't help. Then allergies, but his allergy tests skin and blood were negative for everything. Excema. So we are trying gluten free. He has stomach aches a few times a week and has constipation issues to the point he pukes. Two days in he was a different kid. Kind, calm, rational. But Sunday night he flipped out and has been on a roller coaster of craziness since. At the moment he's calm, but he was hopping up and down mad, pounding the walls, veins bulging, screaming like a maniac a few minutes ago. That behavior is half of why we pulled him off gluten hoping that maybe just MAYBE it would help. Could it be withdrawal two weeks out? It's terrible. Truly awful. BUT he said he hasn't had a tummy ache and his "tummy is happier and happier".

[mamaw]

My suggestion is  to  have  other  testing  done  to make  sure  there is not another  issue....I know when our  kids got to much sugar   it  wipes  them  out  of  any  reasoning...  Other  allergies? Has  the  mental  function  testing been done?  ADHD, Autism  spectrum? There is a trigger  somewhere.....

hope  things  gets  better....

[Stacy0w]

Thanks for your response. When we had allergy testing done they did skin testing and then blood tests for over 200 different things (environmental and food). All negative which seems incredibly unlikely. He can't go outside when my husband mows because he starts sneezing, itching, watery eyes. Tried a food log, but couldn't make a connection. He goes mean on bananas but after taking those away he still has issues. So then we tried the gluten bloodwork. Negative. Then we went to his school and talked to the counselor. She evaluated him and said he is just high energy with some anxiety. His teacher agreed. We know he has sensory issues. They disagreed. We are at a loss. His pediatrician said he was just being a boy, but of course he's never seen him rage and only spends a few minutes with him at a time. Very frustrating. :-/

[mamaw]

Don't give up!  yes, some kids  act  out for attention  &  need  a  good  old  fashion  scolding   but  most  has  an  hidden issue    in a  health  reason.....Have  you  considered  the  high  fructose in  stuff?  Calm  stress  is made  for kids  &  is gluten-free  works wonders for  many. they also make an adult  version.  it  seems to take  the edge  off....

[nvsmom]

If they only ran one celiac disease test, he could be a celiac who is still in the earlier stages of the disease.  The DGP tests (deaminated gliadin peptides) are the best tests for kids, and both IgA and IgG based celiac disease tests should be run in all of the types of test (like ttG IgG and tTG IgA).  As you know, he must be eating gluten in the 2-3 months prior to testing. 

 

He is so very new to the diet that I would not judge its effectiveness yet.  The first 3 months or so can be very up and down in a celiac's recovery.  Some symptoms tend to improve within days, like stomach aches and bloating, but others can take a good 6 months to a year.  The symptoms that tend to take longer to resolve are often neurological like neuropathies, ataxia, cognitive issues and sometimes anxiety; vitamin deficiencies and arthritis can take months to a years to improves as well.  He'll need to stay gluten-free until close to Xmas before you can truly judge if eating gluten-free is helping him.

 

Keep the food and symptoms log going.  They often do help.  Just remember that symptoms from a food sensitivity usually appear from 1 hour to 72 hours later, some people even have a delay of over 3 days.  Because of that, it may be helpful to not vary his diet every day (ex. eat an apple and muffin at lunch every day for a week and then try a new fruit the next week) , or try to eat the same foods on the same days every week.  Remember too that food sensitivities, like celiac disease, do not always improve as soon as the food is removed.  Casein (milk protein) can take a few weeks to recover from if sensitive to that protein.

 

When he rages, and it is safe, you could maybe consider videoing it for his doctors to see.  Seeing is believeing, and so many doctors won't take a patient's word for what has happened.

 

Best wishes to you.  I hope it improves for him soon.