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Behavioral Issues With 4 Year Old Celiac
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Hello, I am new to this site and in desperate need of someone who understands this disease(because his pediatrician here in town DOES NOT). I am a 25 year old single mother to a newly diagnosed 3 1/2 year old boy. He had his biopsy confirmed about 4 months ago and has since been on a STRICT gluten free diet(he seems quite sensitive though). My problem is his behavior and "grumpyness". His BMs are better they were 12 times a DAY at his worst and are now 5-6. So I am assuming his diet is working alittle so far but his behavior is like none i've ever seen in a 4 year old. He has had some speech delays since he was young and is currently in preschool with speech therapy once a week and has come a long way since the start. He is just always grumpy and always saying "No...No...No I dont want to" or "stop it!" when I just ask him a simple question like, "Do you want the green marker or purple?" ... Simple things like that. I am just curious to see if other parents have seen this with their celiac child or if this could be something deeper. I have just been researching and googling my brains out and do not know if this is the disease or if maybe some behavioral issues are behind all of this. Help! I just want to take care of this and help my boy, because I know he does not want to be like this :(

PS- He will have an autism/behavior evaulation in December because of his speech and behavior issues(but shows no signs of autism other then speech delay-no stimming, he has eye contact, lovey-when he wants to be, plays well with kids, and speaks 3-4 word sentences just doesn't understand how to keep or start a converstaion it is mostly "I dont want to go to the park" or "I want a juice box"

**paranoid and never known of celiac before his diagnosis ... Thank you!

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Welcome Jack's Mom!

I can't tell you if his problems are completely related to Celiac Disease, but can confirm they could be.

Couple thoughts regarding Jack:

  • Is it possible he is getting minute amounts of gluten in school?
  • Have you removed all gluten from your home? It is possible to have a shared kitchen, but a very high level of care is needed.
  • Any pets? Most dry pet foods contain gluten.
  • He is still healing - many of us become very grumpy during the early days and when we are glutened.

For you:

  • Is there a Celiac Support Group near you - some cities have separate groups for kids.
  • Have you been tested for Celiac Disease - it is genetically linked.

Hang in there - he will likely improve greatly as time gluten-free increases - but it is wise to make sure there is not something else going on.

Come back here anytime to ask questions, gain support or simply vent :)

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(hugs) I'm sorry to hear that you are having a hard time right now. I hope you find helpful advice around the forum.

My 10 year old son most likely has mild Aspergers (we haven't pusued a complete diagnosis) and has some of the behaviours you describe. When he was a toddler it was fairly easy to have the boy who was happy to sit and line up cans of food but as he got older we noticed how he talked at us rather than with us.

He was a serious little fellow too and did not tolerate irritants well.

That being said, my 10 year old had many of the same symptoms that I remembered having when I was a child. I had him tested, along with my other two boys, and they all had negative tests. We changed them to a gluten-free diet anyways and have seen some improvements over the last month. My son is less sensitive and able to control his emotions a bit better. He also has approached family friends, who he had previously never spoken to, and is able to participate in group work and play for much longer periods of time than he did previously. He is still less socially adept than his 8 year old brother, but it's improved.

He also is cutting dairy out of his life. Many kids with autism have a leaky gut and have issues with gluten, the casein in millk, and soy. We're slowly working towards cutting out all that... with him, a slow change works better than an abrupt one. Removing milk and soy could help your boy. Improving gut health by adding probiotics and making sure he does not have too much yeast in his system could help too.

Jenny McCarthy's book about her son's autism struggles have some good tips. In fact it was her book that made me see my oldest son's behaviours could be liked to autism. There are quite a few cookbooks on a Gluten-free Casein-free diet for autism and ADHD out there that could be helpful.

My 5 year old also had a huge improvement in his bathroom habits. He had a bowel movement about 8 or so times a day, often during a meal. He now goes just twice a day and it is much more consistantly formed.

Best wishes to you and your son.

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Would you review this on Find Me Gluten free?  You can  use the app or just go to it on line. If the restaurant isn't listed, there is a way to suggest it.  I have done that and it works.  Many of us look at that site/ app
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