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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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    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
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