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Mental Health?
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I need advice, recommendations, or anything at this point. My 9 year old celiac daughter (diagnosed 6 months ago) has been feeling much better on her gluten free diet. We are trying very hard and still learning about cross contamination and healthy options. But, she has become very clingy over the last year and is slowly becoming reclusive. She has withdrawn from all activities, refuses to go to friends' parties, has quit sports that I know she enjoys and is good at. She basically wants to do whatever I'm doing all the time and is perfectly content to sit quietly at my office for hours if I'm busy. I have no idea how to handle her. Should I push her into the sports that she is good at and used to enjoy? Should I make her go play at a friend's house? I really can't make her do anything because she cries and refuses. I would love for her to go to celiac camp, but she wont even go five minutes away if im not there. She is turning me into a 'hovering parent' and i really dont want to be one. She is very smart, but non verbal for days sometimes. I'm frustrated, tired, and feel like my child probably has mental health issues that I don't know how to deal with. At times she is charming, funny, and 'normal' and at other times I feel like I'm living with a reclusive, manipulative preschooler.

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Have you thought about working with a child psychologist?  Being sick and being diagnosed with a life long illness is hard for anyone to deal with.  She may not completely understand it and feel afraid  of so many aspects even things you think she understands. 

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How is she feeling physically?  Any symptoms like stomach or gut pain, fatigue, muscle cramps etc?  If she doesn't feel well most of the time it is not likely she will want to do things.  She may not be able to express how she is feeling accurately?  Sometimes children can draw a picture of how they feel that communicates better than their words.  Just a thot.

 

Six months may not be enough time for her to heal completely.  It isn't enough time for many to heal completely.  The best chance for her to heal quickly is to keep her diet simple, avoiding most processed foods.

 

This article talks about how gluten and schizophrenia can be related.  I am not suggesting she has schizo signs at all.  But just saying that foods can trigger various mental symptoms in people.  IMHO that includes many foods, not just gluten.  The gluten and opiate connection is well documented already.  Casein (cow dairy protein) is also a possible problem.  The US Army experimented with using casein to improve soldlier's alertness on the battlefield.  So it also can have affects.  With leaky gut it is possible for food proteins that normally are completely broken down in the gut to get in the blood stream in a more intact state.  That may cause various symptoms.

 

Personally I think changing her diet first before assuming she has a real mental situation going on is a better approach.  Doctors tend to just throw drugs at mental symptoms and that may not help at all if the real problem is a food reaction.  It may even hurt her.

 

Some of the things that might trigger symptoms are food colorings, soy, nightshades, eggs, corn, etc etc.  Food reactions are specific to an individual and they have to be identified for each person.  Something that causes a reaction in one person could have no effect on another.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2652467/

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I'm not saying she has a " real mental situation " going on. But a 9 year old that doesn't talk for days and doesn't want to leave her mom's side might benefit from talking to someone who understands how kids deal with illness. Maybe someone at a children's hospital.

I wonder if she doesn't want to talk to mom about her fears because she doesn't want to upset her mom. And she may have misunderstood some of the things that are happening and think Celiac is worse than it is. I have seen that happen. It helps to talk to a person without worrying that the child might upset them or make them angry. ( not saying you would be angry but kids think a little differently). You could talk to the psychologist first and give a good explanation of Celiac so they would understand why she might be afraid to visit other kids. Or understand that she won't die if she accidentally gets a crumb of gluten.

Whatever you decide, I hope she gets back to herself soon.

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Do you have a Celiac Support Group near you...many cities have ones perfect for kids...R.O.C.K. and others might be a great place to get her together with other kids dealing with what she is and you will meet parents that have dealt in part with the same issues your family is going through.

 

I agree with researching all possible avenues to help your daughter -- Hang in there Mom!!!!

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First, thanks for all of the support and help so far. If is very encouraging just to say these things to somebody and have them get it.

I do think we need to involve some kind of therapist, even if it's just to help with communication. She has never been able to communicate well verbally and has always been shy, so our problem isn't new. She didnt talk until nearly three and then in whispered complete sentences. But lately I am much more concerned about her mental health. She doesn't think that people like her and she doesn't want to participate in anything -- not school, scouts, gymnastics (which she is competitive in and has always loved), or going to friends' houses. Because she has been so sick for years, I've really babied her and let her get away with being too clingy. Now I thought we were moving in a positive direction and we are suddenly in a huge set back. Sometimes she will write me a note to let me know what's wrong and I think that is wonderful. If I could get a daily note I would feel better about everything.

We live in a very rural area with not so much as a pediatrician around. We drive over two hours to the GI doc and will be glad to do whatever she needs, but there are definitely no support groups around here. I do think it would be helpful for her to be around other celiac kids, but we just don't know any. That's one reason I would live for her to go to camp. I don't know whether to be firm with her and make her participate in things, or be more patient and let her stick close to home all the time.

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I used to work in a Children's hospital.  This is common behavior for some kids, & parents of the kids, who have been sick for a while.  That's why I think  it would be helpful for the two of you to see a psychologist at a  Children's hospital.  Might just take a few sessions to get things to work on.

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Hi LFitts,

 

She is still early in the gluten-free diet.  Celiac disease can have many different symptoms, not all of them in the gut.  And they don't all go away in a few months.

Celiac disease symptoms
http://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html

Before I went gluten-free I had constant pain in my gut.  It took 9 months after going gluten-free for that to become intermittent pain instead of constant.  Which was a nice change.  But that pain came back very quickly whenever I got exposed to even a little gluten.  What I am saying is that it is very possible your daughter is still having pain from her celiac disease.  Even a tiny amount of gluten in her food will cause an immune reaction that does damage.  It's hard to be a happy, bright, care-free child if you are in pain.  My reactions now are sometimes a more dispersed, wide spread discomfort that is hard to identify to a specific area.  I get this kind of situation with reactions to other foods like dairy or nightshades.  Nightshades and soy also cause me joint pain.

Once when I was healing I made the mistake of eating some dairy.  I was awake for 3 and half days straight and couldn't sleep at all.  You are dealing with a sick child.  She isn't just like every other non-sick kid.  She has special diet requirements and will react to foods in sometimes dramatic ways.  That just goes with having a digestive disease.  It's not something she can help, or just ignore.

You have a difficult task.  Identifying food reactions is tricky even for adults with celiac disease.  Sometimes food reactions are delayed for a few days after eating a food.  Sometimes reactions can build up over time.  Sometimes we develop new food intolerances as we go that never bothered us before.  There is no one size fits all easy answer for celiacs.  We all have to learn what is safe for us to eat by experimentation.  Sometimes people have more food reactions when they are new to the gluten-free diet than they do later.  Dairy is often hard for people to digest at first but may not be a problem later on.

I think it is worth trying a very safe, low risk,low allergen diet with her.  Like no preservatives, no processed foods, no food colorings, no candy, no anything that might cause a reaction in a very sensitive gut.  Think of her gut as damaged and trying to heal.  The less weird chemical stuff she eats and hard to digest foods, the easier it will be.  Simple, whole foods are the best choice.  Made at home, no eating in restraunts.  You might need to check her bath products for gluten also.

I suggest no soy and no dairy for a few months at least.  If she doesn't get better then maybe some pshycolgical counseling would help.  But my thinking is that the known problem is the first place to look for causes (celiac disease) rather than assuming a new problem.  If she does get better on a "safe", low allergen diet, then you can try expanding her diet slowly by adding things back in on a trial basis.  One new food item at a time for a week.

That's just some ideas for you to consider.  Remember healing from celiac disease damage is not like flipping a switch.  It takes time and it is usually a bumpy road with lots of hills and valleys to go through.  A slow general trend upwards is more typical than a sudden total recovery.  A year or more is not unexpected to get back to a general feeling of wellness.  For some people it can take several years.  For me it was about 5 years.

B vitamins can be helpful for people with nerve issues.  Malabsorptoin of nutrients due to gut damage can cause plenty of symptoms by itself.

I hope there is something useful for you in all that rambling. :)

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Hi LFitts,

 

She is still early in the gluten-free diet.  Celiac disease can have many different symptoms, not all of them in the gut.  And they don't all go away in a few months.

Celiac disease symptoms

http://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html

Before I went gluten-free I had constant pain in my gut.  It took 9 months after going gluten-free for that to become intermittent pain instead of constant.  Which was a nice change.  But that pain came back very quickly whenever I got exposed to even a little gluten.  What I am saying is that it is very possible your daughter is still having pain from her celiac disease.  Even a tiny amount of gluten in her food will cause an immune reaction that does damage.  It's hard to be a happy, bright, care-free child if you are in pain.  My reactions now are sometimes a more dispersed, wide spread discomfort that is hard to identify to a specific area.  I get this kind of situation with reactions to other foods like dairy or nightshades.  Nightshades and soy also cause me joint pain.

Once when I was healing I made the mistake of eating some dairy.  I was awake for 3 and half days straight and couldn't sleep at all.  You are dealing with a sick child.  She isn't just like every other non-sick kid.  She has special diet requirements and will react to foods in sometimes dramatic ways.  That just goes with having a digestive disease.  It's not something she can help, or just ignore.

You have a difficult task.  Identifying food reactions is tricky even for adults with celiac disease.  Sometimes food reactions are delayed for a few days after eating a food.  Sometimes reactions can build up over time.  Sometimes we develop new food intolerances as we go that never bothered us before.  There is no one size fits all easy answer for celiacs.  We all have to learn what is safe for us to eat by experimentation.  Sometimes people have more food reactions when they are new to the gluten-free diet than they do later.  Dairy is often hard for people to digest at first but may not be a problem later on.

I think it is worth trying a very safe, low risk,low allergen diet with her.  Like no preservatives, no processed foods, no food colorings, no candy, no anything that might cause a reaction in a very sensitive gut.  Think of her gut as damaged and trying to heal.  The less weird chemical stuff she eats and hard to digest foods, the easier it will be.  Simple, whole foods are the best choice.  Made at home, no eating in restraunts.  You might need to check her bath products for gluten also.

I suggest no soy and no dairy for a few months at least.  If she doesn't get better then maybe some pshycolgical counseling would help.  But my thinking is that the known problem is the first place to look for causes (celiac disease) rather than assuming a new problem.  If she does get better on a "safe", low allergen diet, then you can try expanding her diet slowly by adding things back in on a trial basis.  One new food item at a time for a week.

That's just some ideas for you to consider.  Remember healing from celiac disease damage is not like flipping a switch.  It takes time and it is usually a bumpy road with lots of hills and valleys to go through.  A slow general trend upwards is more typical than a sudden total recovery.  A year or more is not unexpected to get back to a general feeling of wellness.  For some people it can take several years.  For me it was about 5 years.

B vitamins can be helpful for people with nerve issues.  Malabsorptoin of nutrients due to gut damage can cause plenty of symptoms by itself.

I hope there is something useful for you in all that rambling. :)

 

Thank you! Summer is a great time for us to cleanse our diet and we have been working on that since school got out. We are eating a lot straight from the garden, but we can certainly do more. Well meaning friends have given us gluten-free cookies and other 'treats' that they find. I am fully embracing a simpler diet where we know the source of most of our foods.We are eating local honey, salsas and smoothies made with real ingredients that we grew or bought locally, and more. She has rebelled against taking vitamins lately, and since she is not currently deficient on anything, I haven't pushed it. We add some vitamins to the smoothies, but not much at this point. She was enjoying the chewable probiotics, but doesn't want to take those either. I think she's exerting some control in areas where she can. I think I have just gotten frustrated and I do forget that she's sick, because she is so strong and athletic. She was so sick for the last year, and it has only taken a month or so of feeling pretty good for me to start to expect too much from her. If she wants to quit gymnastics and other activities and hang out with me all summer eating real food and being nurtured, then so be it.  I think that some of her withdrawal from parties, etc, is all of the food that is served. She has to either go without or bring her own, and she's just not comfortable doing that.

 

I will be researching counseling options, but I want it to be a positive thing and not somewhere that I just drag her because I'm frustrated. Really, it's nothing new. She's getting older and I want to see her becoming more independent (like her siblings and peers), but it feels like she's moving in the opposite direction. Honestly, she would love for me to rock her to sleep every night and her legs just dangle all the way to the ground. I'm starting fresh in my attitude toward it all today, just being thankful that she is healing and feeling pretty good.

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I don't have any real advice since I am just starting down this road to recovery with my 6 year old son. I just wanted to throw in some big ((((hugs)))) to you and your daughter. It's never easy being different. Hopefully, you find the answer to her clinginess and she starts to break out of her shyness shell. My oldest daughter (18 years now) was painfully shy when she was little and it took a long time to get her to break out of that.

 

So, anyway, hugs to you and yours!

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Maybe, seeing she likes to write you notes, you could interest her in starting a journal. Maybe you could do it together, almost as a game. Both of you sit at a table with your notebooks and write whatever comes to mind. At college one of my instructors had us do "five minute free writing" at the beginning of each class. If you don't have a subject in mind, you just write about what is in front of you -

 

"I never noticed what a pretty shade of blue the tablecloth is. It looks a bit like the sky on a windy day after a rain storm has passed. I remember one day like that we went out and flew kites. What a great time we had. Susie was there and we laughed so hard I though I'd pee my pants. That reminds me of the last time I was sick with celiac and I almost didn't make it to the bathroom in time. I'd be so embarrassed if that happened in front of my friends..."

 

See what I'm getting at? One thought leads to another until suddenly you find yourself writing about stuff you didn't even REALIZE you had on your mind.

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I need advice, recommendations, or anything at this point. My 9 year old celiac daughter (diagnosed 6 months ago) has been feeling much better on her gluten free diet. We are trying very hard and still learning about cross contamination and healthy options. But, she has become very clingy over the last year and is slowly becoming reclusive. She has withdrawn from all activities, refuses to go to friends' parties, has quit sports that I know she enjoys and is good at. She basically wants to do whatever I'm doing all the time and is perfectly content to sit quietly at my office for hours if I'm busy. I have no idea how to handle her. Should I push her into the sports that she is good at and used to enjoy? Should I make her go play at a friend's house? I really can't make her do anything because she cries and refuses. I would love for her to go to celiac camp, but she wont even go five minutes away if im not there. She is turning me into a 'hovering parent' and i really dont want to be one. She is very smart, but non verbal for days sometimes. I'm frustrated, tired, and feel like my child probably has mental health issues that I don't know how to deal with. At times she is charming, funny, and 'normal' and at other times I feel like I'm living with a reclusive, manipulative preschooler.

 

This is the sort of situation that a child psychologist is just for.  It's not a process that will resolve quickly - it may take months, at the least - but I would HIGHLY recommend it.

 

 

I will be researching counseling options, but I want it to be a positive thing and not somewhere that I just drag her because I'm frustrated. Really, it's nothing new. She's getting older and I want to see her becoming more independent (like her siblings and peers), but it feels like she's moving in the opposite direction. Honestly, she would love for me to rock her to sleep every night and her legs just dangle all the way to the ground. I'm starting fresh in my attitude toward it all today, just being thankful that she is healing and feeling pretty good.

 

You can absolutely frame it as "I'm worried about you, but I don't know how to help.  We're going to find someone who can help us, together.  I want you to feel better physically - like we did with changing your diet - and mentally too."

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one word...puberty

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one word...puberty

 

 

Puberty - they want to separate from their parents.  Maybe you could goggle the mental effects of a child with a chronic illness.  I like how Tarnelberry phrased it as an explanation for why you need to see someone.

 

I'm sorry.  I'm only pushing this because that does not sound like normal 9 year old behavior.  You even said that she used to like to do things and she doesn't now.  I'm worried about her. 

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The refusal to take a vitamin, etc. is normal, I think. Even refusing to talk can be normal. My bet is she feels out of control given the dx and its changes and like a toddler...is choosing to control those few things that are within her control.

When we were testing my son for Celiac he did the same things - would withdraw, cling, refuse to eat things he'd previously liked, refused vitamins. In general, anything to drive me nuts.

That said, if she hasn't snapped out if it...I think you need some help. Try contacting the closest celiac group you can find - they may know of a kids group or a kid in your area. It may help for YOU to talk to an adult dealing with a Celiac kid. I'm sure it would be enlightening.

Dealing with snarky people (potentially, her friends) can be tough. There's been lots of talk here about that, lately. Imagine being 9 and doing that.

And last, because im a broken record, have they thoroughly tested her thyroid? Thyroid disease is autoimmune, like Celiac, and they like to run together. Withdrawal and mood changes are common thyroid symptoms. I assume a decent therapist would suggest it before treating her with other drugs.

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 wa

Puberty - they want to separate from their parents.  Maybe you could goggle the mental effects of a child with a chronic illness.  I like how Tarnelberry phrased it as an explanation for why you need to see someone.

 

I'm sorry.  I'm only pushing this because that does not sound like normal 9 year old behavior.  You even said that she used to like to do things and she doesn't now.  I'm worried about her. 

they want to control, and isn't she?  she is getting everything she wants.

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And last, because im a broken record, have they thoroughly tested her thyroid? Thyroid disease is autoimmune, like Celiac, and they like to run together. Withdrawal and mood changes are common thyroid symptoms. I assume a decent therapist would suggest it before treating her with other drugs.

 

Actually her thyroid function never has been tested. She goes for follow-up blood work in a couple of weeks, so I will see if they can check that then.

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they want to control, and isn't she?  she is getting everything she wants.

She is getting everything she wants.

 How can you tell the difference between a spoiled brat that you've given in to too much, and a sick child that needs additional nurturing in order to feel safe in the world?? This parenting gig is TOUGH.

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She is getting everything she wants.

 How can you tell the difference between a spoiled brat that you've given in to too much, and a sick child that needs additional nurturing in order to feel safe in the world?? This parenting gig is TOUGH.

 

Good question.  It is tough.  Even in the absence of illness, children go through phases.  "Experts" have contradicting ideas about what to do.  I tend to listen to my gut.  As parents, we are closest to the problem and understand our children best.

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they want to control, and isn't she? she is getting everything she wants.

Actually, in my opinion and experience, puberty isn't exactly about control. It's about independence. It's about having control over themselves and their life and making some choices for themselves. Letting mom make all the decisions isn't puberty. Being afraid she will get sick or die if she leaves mom, isn't puberty.

I can see this mom doesn't like the idea of getting some counseling ( not saying drugs) for her and her daughter to help them get over this hump. I hope it works out Ok for the child and she isn't unhappy for very long.

What I am trying to say is- there is an adjustment from being a sick child to being a well child. There is an adjustment from being a parent of a sick child to being the parent of a well child. Some kids and parents adjust better than others. It is no shame to get a little help with the adjustment.

Edited by kareng
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Hi LFitts,

It sounds like she has a great diet environment.

Maybe you can try a test to see if she is having pain or discomfort she isn't expressing?  Some of the things I do if I have a glutening are:

1 Take peppermint tea or Peppermint Altoids.
2 Take aspirin or other pain releiver.
3 Take Pepto Bismol.

Peppermint helps get gas out of the stomach.  Gas trapped in the stomach can cause discomfort.

Aspirin reduces pain.

Pepto Bismol tends to reduce gut pain.

Pepto Bismol can cause stool to turn black, which isn't a problem, Just something to be aware of so it's not a worry.  Usually black stool indicates bleeding in the gut.  But the pink color of the Pepto Bismol results in a black color when mixed with the normal stool color.  It's just a temporary effect.

If she takes some aspirin (or other pain reliever), drinks some peppermint tea and takes some Pepto, she may feel better if she is having a pain or discomfort situation.  If you do all these things for her and she behaves more positively after an hour or so that might be a clue.

The idea of testing her thyroid function is a good one IMHO.  Having her talk to a counseler of some sort isn't going to hurt her I don't think.  It just seems the physical issues should be explored first or at the same time.

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Hi LFitts,

It sounds like she has a great diet environment.

Maybe you can try a test to see if she is having pain or discomfort she isn't expressing?  Some of the things I do if I have a glutening are:

1 Take peppermint tea or Peppermint Altoids.

2 Take aspirin or other pain releiver.

3 Take Pepto Bismol.

Peppermint helps get gas out of the stomach.  Gas trapped in the stomach can cause discomfort.

Aspirin reduces pain.

Pepto Bismol tends to reduce gut pain.

Pepto Bismol can cause stool to turn black, which isn't a problem, Just something to be aware of so it's not a worry.  Usually black stool indicates bleeding in the gut.  But the pink color of the Pepto Bismol results in a black color when mixed with the normal stool color.  It's just a temporary effect.

If she takes some aspirin (or other pain reliever), drinks some peppermint tea and takes some Pepto, she may feel better if she is having a pain or discomfort situation.  If you do all these things for her and she behaves more positively after an hour or so that might be a clue.

The idea of testing her thyroid function is a good one IMHO.  Having her talk to a counseler of some sort isn't going to hurt her I don't think.  It just seems the physical issues should be explored first or at the same time.

 

Careful!  No aspirin for kids and that includes Pepto Bismol (contains aspirin)  to avoid Reye's Syndrome (can be very dangerous).   

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Careful!  No aspirin for kids and that includes Pepto Bismol (contains aspirin)  to avoid Reye's Syndrome (can be very dangerous).   

 

Good point!  Is there a safer alternative she could use that you are aware of?

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Good point!  Is there a safer alternative she could use that you are aware of?

Not sure about the peppermint tea for kids, but it's good for adults.  Ibuprofen or Tylenol are safe choices for most kids.   I'd try Tylenol first.  

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I can see this mom doesn't like the idea of getting some counseling ( not saying drugs) for her and her daughter to help them get over this hump.

.

Not sure how I gave that impression because I am definitely interested on getting help. A pediatric therapist might be very good for us, but we are quite far from any services like that. I want to ask the GI Doc for a recommendation when we go back in a couple if weeks. I don't even know of anyone whose child is in counseling of any kind in the rural area where we live.

I'm thankful for all the suggestions. We have no improvement except in my attitude.

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