Emotional, Developmental Delays

[carrielynn]

My 5 year old son was diagnosed with celiac about 6 weeks ago and he's been gluten free since then (to the best of our knowledge). His mood and energy have improved, but his skin still looks pretty bad. (I believe he has the DH form of celiac... his symptoms were not gastrointestinal. He was not officially diagnosed with DH, but I'm pretty sure that's what it is.)

He just entered kindergarten 2 weeks ago. The teacher called a parent/teacher conference with me and my husband today, which I thought was rather quick. She wanted to let us know how behind our son is emotionally and academically. She said he cries often, he doesn't know all his letters, and he refuses to do his work (basically just coloring and crafts).

We tried to tell her about the celiac situation and that we think it could be the reason for him being a bit behind the other kids. She didn't even know what celiac meant and asked for us to spell it for her. I personally think he'll be fine and that he'll catch up now that he's starting to feel better. But I wanted to check with people here about their experiences with their children. Our son is definitely emotionally immature (relatively to the other children -- I can see this), he's smaller than the other children, and he does have some behavioral quirks that are causing some problems. Can we expect these things to resolve pretty quickly now that we know what's going on with the celiac situation? Does anyone else have a similar experience they can share?

Thanks,

Carrie

[Jnkmnky]

Waiting a year to enroll him in Kindergarten is a good idea. I don't know what your family situation is, but if you can wait a year, that's really the best thing to do. My son was gluten-free for 2 years by the time he entered kindergarten. He was not emotionally behind, he's very outgoing and friendly, and loved school. But he had cognitive and motor delays. Because he was just as happy as can be, I left him at kindergarten. His pre-school teacher reminded me Kindergarten is FREE, he's happy, he's social, he got a teacher who was fine with his issues and I decided to leave him in his class and it worked well. He repeated kindergarten and had a blast a second time. Now he's in first and EXACTLY where he belongs. I have no regrets. Holding a kid back a year to begin with is relatively easy compared to having them repeat when they're older. That's gotta hurt a little more. If your son isn't even ready emotionally and socially to have a "round one" of kindergarten, then hopefully, keeping him home for one extra year will be doable for your family. You can also use that time to reinforce basic reading, writing, math and social skills. It's better to build his confidence rather than subject him to emotionally challenging situations for 6 hours a day for a year, then push him into the next grade.... and so on. These are his first impressions of a 13 year "career"!

[carrielynn]

Waiting a year to enroll him in Kindergarten is a good idea.  I don't know what your family situation is, but if you can wait a year, that's really the best thing to do.  My son was gluten-free for 2  years by the time he entered kindergarten.  He was not emotionally behind, he's very outgoing and friendly, and loved school.  But he had cognitive and motor delays.  Because he was just as happy as can be, I left him at kindergarten.  His pre-school teacher reminded me Kindergarten is FREE, he's happy, he's social, he got a teacher who was fine with his issues and I decided to leave him in his class and it worked well.  He repeated kindergarten and had a blast a second time.  Now he's in first and EXACTLY where he belongs.  I have no regrets.  Holding a kid back a year to begin with is relatively easy compared to having them repeat when they're older.  That's gotta hurt a little more.  If your son isn't even ready emotionally and socially to have a "round one" of kindergarten, then hopefully, keeping him home for one extra year will be doable for your family.  You can also use that time to reinforce basic reading, writing, math and social skills.  It's better to build his confidence rather than subject him to emotionally challenging situations for 6 hours a day for a year, then push him into the next grade.... and so on.  These are his first impressions of a 13 year "career"!

<{POST_SNAPBACK}>

If we have to hold him back, we will. However, he has had 5 total days with this teacher (he's been sick some and there was also a substitute teacher for several days), so I don't think she's had enough time to assess him, or give him a chance. I'm not ready to throw in the towel immediately after school has started and just accept that he'll repeat kindergarten. That is ludicrous. We've been working with a neurofeedback therapist who assesses children all the time and she's really questioning this teacher's comments. We believe his delays are due to the celiac problem which we're aggressively addressing through strict aherence to a gluten-free-dairy-free diet.

When he feels bad he's very moody and oppositional. Who wouldn't feel bad when they are scratching their skin constantly? He's becoming less and less moody these days and we think that's due to no gluten in his diet. When he feels good he's an absolute delight to be around. He's smart and he knows how to write his name. He sings songs, he can also count well past 100 and has been playing with measuring tapes to measure things in our house and compare sizes. He discusses gravity with us and wants to know how everything works. He invents things and asks tons of questions. This is the child I know. He is not behind cognitively. I don't believe she's giving him a chance. I do think he's a little anxious being in elementary school, he doesn't know anyone in his class and he needs some time to get comfortable. I would welcome this discussion in several months if these problems continue.

I just want to know if anyone else has experienced some developmental delays before they knew their child had celiac disease and how long it took for them to catch up after it was diagnosed.

Thank you

--Carrie

[brdbntL]

He doesn't know all of his letters- isn't that what Kindergarten is for? If he isn't used to being around other kids it will take time. My daughter is 5 and just started Kindergarten she doesn't know all of her letters, but neither did her sister when she started and her sister doesn't have Celiac. I hope everything works out for you, but I just wanted to let you know that not all kids going into kindergarten know their letters.

Laura

[carrielynn]

He doesn't know all of his letters- isn't that what Kindergarten is for? If he isn't used to being around other kids it will take time. My daughter is 5 and just started Kindergarten she doesn't know all of her letters, but neither did her sister when she started and her sister doesn't have Celiac.  I hope everything works out for you, but I just wanted to let you know that not all kids going into kindergarten know their letters.

Laura

<{POST_SNAPBACK}>

Yes, EXACTLY!!! Thank you! What is kindergarten for? The teacher kept telling us that his fine motor skills were lacking because he doesn't hold a marker right. Well, isn't her job to teach him how to do that? He just hasn't had any practice in holding a marker or pencil correctly... it's not that he can't do it. (And we weren't aware until now that this was a problem or else we would have been working with him before he entered kindergarten. It is now apparent that his preschool didn't work with him on this very much. ) At no time during our parent/teacher conference did she indicate that he could get special help with this. It was communicated to us that this was a problem and a reason why he needed to be placed back in preschool.

I doubt very seriously the other children know their letters or are "perfectly ready" in all areas either.

I'm really hoping that as his skin heals... and therefore any digestive issues which could have been causing malabsorption... and that he has a good growth spurt. He is very aware that he's a little guy. He asked for more vegetables at dinner last night because he wants to get bigger! It just breaks my heart!

I have noticed that he's changed a bit since he entering kindergarten. It's like he's matured on another level. He seems older to me. So I think this is a really good thing that he needs.

Thanks for all your support. It is so hard being a parent.

--Carrie

[Jnkmnky]

He just entered kindergarten 2 weeks ago.  The teacher called a parent/teacher conference with me and my husband today, which I thought was rather quick.  She wanted to let us know how behind our son is emotionally and academically.  She said he cries often, he doesn't know all his letters, and he refuses to do his work

We tried to tell her about the celiac situation and that we think it could be the reason for him being a bit behind the other kids.  ** I wanted to check with people here about their experiences with their children. 

Our son is definitely emotionally immature (relatively to the other children -- I can see this)

he does have some behavioral quirks that are causing some problems. 

Can we expect these things to resolve pretty quickly now that we know what's going on with the celiac situation?  Does anyone else have a similar experience they can share?

Thanks,

Carrie

<{POST_SNAPBACK}>

I was responding to specific comments in your post. If you read what you wrote again, you'll see that you posted a pretty grim picture for future success during the remainder of the school year. You can pick your battles, or you can run head-long into them.

My response to you was from my own experience. I struggled with the thought of actually holding my son back. It's a big deal, it's a blow to his ego, my ego, other parents form oppinions about your child, you and your choices. Holding a child back isn't for the faint hearted. But I've done it.

Yesterday I went to school lunch with my son *I do this every single day* and he was so happy sitting with a bunch of boys from his class. They were chatting, listening to one another, patting each other on the back, preparing to tackle the "new" playground as soon as the recess whistle blew. It was a confirmation for me that he's with the kids who are right on his level. I mean social, academic, even physical. My son has the gait of a child a year younger than his actual age of 7.

I think you should consider what your teacher tells you as professional advice. Teachers are there to help, not heartlessley single out your child as imperfect. They really want your child to succeed in the coming years. I know when my son's first kindergarten teacher approached me and my husband about our son's delays, she did it so gently that I happily stated the obvious to relieve her tension...."HE'S BEHIND AND NEEDS SOME HELP? OR DO YOU WANT HIM TO WAIT AN ADDITIONAL YEAR?" She was shocked. She said oh thank god you're not upset. some parents don't want to have this discussion and you never know how people will react.

Here she was trying to help my child, but worrying about my reaction was keeping her from being as straightforward as she needs to be in a situation that concerns my child's furture successes? That doesn't help my son!

As for knowing his letters. Our school expects kids entering kindergarten to have a working knowledge of letters, the basic concepts of reading.... meaning a word is grouped into blocks of letters and a sentence moves this way-------> , there are big letters and little versions of big letters. They expect this. It shocked me too.

No one knows your child the way you and your husband do. You make all the choices for him. You know what's best for you son. I don't. I was just 'sharing my similar experience' like you asked and offering what I found to be a great solution that we came up with in that similar situation. Sorry if it ruffled your feathers. I meant to be helpful.

[Guest taweavmo3]

My son is in first grade now, but last year they really expected alot of little 5 year olds. In kindergarten, they were working on pre-reading, sight word memorization, addition and subtraction. I was so thankful we had put Jack in a good pre-k, because he would have been terribly behind had he not already learned his letters. Kindergarten is so different now than when I was little.....I remember the alphabet people, but that seems to be pre-school stuff now! I am really shocked how much they try to cram in at such a young age. My little boy had a rough transition in the first few weeks of kindergarten, and he didn't have any delays. It's a tough time for any kid.

I don't have much advice for ya, since my celiac daughter still has a couple of years before she starts school. But I do know that we will most likely be holding her back......she is so itty bitty, and at least a year or more behind. She has been gluten free for 6 months, and the developmental progress has been slow. From other parents I have talked to in my support group, usually some type of additional help is needed to help kids catch up. Occupational therapy can help with fine motor skills if needed. Emmie will need OT, speech therapy and physical therapy. Every kid is different of course, but I think it is hard to just catch up on these skills on their own, and it can be incredibly frustrating for the child. Just my thoughts.....as this is all new territory for us!

Hope things get better soon, school can be so tough these days!

[carrielynn]

I was responding to specific comments in your post.  If you read what you wrote again, you'll see that you posted a pretty grim picture for future success during the remainder of the school year.  You can pick your battles, or you can run head-long into them.

My response to you was from my own experience.  I struggled with the thought of actually holding my son back.  It's a big deal, it's a blow to his ego, my ego, other parents form oppinions about your child, you and your choices.  Holding a child back isn't for the faint hearted.  But I've done it. 

Yesterday I went to school lunch with my son *I do this every single day* and he was so happy sitting with a bunch of boys from his class.  They were chatting, listening to one another, patting each other on the back, preparing to tackle the "new" playground as soon as the recess whistle blew.  It was a confirmation for me that he's with the kids who are right on his level.  I mean social, academic, even physical.  My son has the gait of a child a year younger than his actual age of 7. 

I think you should consider what your teacher tells you as professional advice.  Teachers are there to help, not heartlessley single out your child as imperfect.  They really want your child to succeed in the coming years.  I know when my son's first kindergarten teacher approached me and my husband about our son's delays, she did it so gently that I happily stated the obvious to relieve her tension...."HE'S BEHIND AND NEEDS SOME HELP?  OR DO YOU WANT HIM TO WAIT AN ADDITIONAL YEAR?"  She was shocked.  She said oh thank god you're not upset.  some parents don't want to have this discussion and you never know how people will react. 

Here she was trying to help my child, but worrying about my reaction was keeping her from being as straightforward as she needs to be in a situation that concerns my child's furture successes?  That doesn't help my son!

As for knowing his letters.  Our school expects kids entering kindergarten to have a working knowledge of letters, the basic concepts of reading.... meaning a word is grouped into blocks of letters and a sentence moves this way-------> , there are big letters and little versions of big letters.  They expect this.  It shocked me too.

No one knows your child the way you and your husband do.  You make all the choices for him.  You know what's best for you son.  I don't.  I was just 'sharing my similar experience' like you asked and offering what I found to be a great solution that we came up with in that similar situation.  Sorry if it ruffled your feathers.  I meant to be helpful.

<{POST_SNAPBACK}>

Please read my further posts you'll see that I don't have a problem with him repeating kindergarten. And no-one here has ruffled my feathers. I'm angry at how the teacher is handling this situation, so she's the one ruffling my feathers.

I do have a problem with the teacher asking me to remove him from kindergarten and put him in a 4-year-old program at a preschool -- essentially asking us to pay thousands of dollars and uproot him from something he has been looking forward to all summer long. That's what I'm angry about. This is a public school and they are legally required to offer services and assistance for children like my son. They provide one-on-one support for special needs children. At no time did she offer those services at all.

I don't think it's good for my child emotionally to be placed with 4-year olds. I think it's better for him to hang out with children his own age and observe the potential issues with that. If he does have problems, then we have good information and we know it's the right thing to hold him back. But there's no way to know that in just 2 weeks. He did just fine socially in his preschool.

The original reason I was posting was to find out if people noticed that their chidren overcame any developmental problems after they were gluten-free and how soon after they went gluten-free did these changes happen. I apparently did not communicate this well enough but that's what I want to know.

I should also clarify that it's the teacher who says he doesn't know his letters, which is NOT true. He sings the alphabet and he identifies them all with me -- I point them out and he accurately identifies them all the time. That's why I'm wondering if he's being assessed properly. And we're seeing incredible progress in his mood since going gluten-free, which gives me hope that the emotional issues will resolve. (About 2 weeks before school started he became absolutely DELIGHTFUL to be around. It's wonderful!)

Thanks,

Carrie

[Jnkmnky]

Sorry. I thought you were being defensive. I still do, but I guess it would have been better not to try and talk to you about it twice.

[mstrain]

Carrie:

Please keep in mind that teachers are advocates for children - they are not in education to make children and their parents miserable. You are absolutely correct in realizing that the teacher does not know your child as well as you do (a couple of weeks vs. 5 years!) but the teacher is not "out to get you." Also keep in mind that the teacher is drawing from his/her past experiences with other children when an assessment is made. Perhaps this teacher has never had a child who had celiac disease and isn't aware of possible developmental advancements that can be made once a gluten-free diet has begun. You mentioned special services - these services are not always provided one-on-one but in "group" sessions and a student must be "classified" for these services to be provided - you may not what this "label" for your child if waiting a year is what is warrented - it is quite a process to "declassify" a student. Yes, I am a teacher and this is my "professional" side speaking.

As a mother of a five year old daughter who is about to start kindergarten I can only imagine how frustrating it would be if a teacher didn't realize the obvious potential my child has. But being on both sides of the fence I would listen very carefully to what the educators were telling me, digest the info, do my own research (such as you are doing) and then try to have a calm discussion with all involved. What does your pediatrician have to offer to this dilemma?

In regards to your question regarding develpmental advancement once healing has begun I have absolutely no idea. Sorry! I only hope that you can find the information you need. And if the recommendation of "holding back" your child is strongly made, realize that many children start a year later simply because of their age or size - nothing to do with their cognitive ability. A strong, positive beginning is so essential for a lifetime love of learning! Best wishes!

[glutenfreeheather]

I do not know the entire situation in regards to your child, but my best friend teaches pre-schoolers with autism. Several of her students also suffer from celiac (the two are apparently linked). Their reaction to gluten is behavioral and not GI. She says that when they ingest gluten, their behavior is completely different. Has your doctor suggested having him tested for this?

As I said, I obviously do not know your son and I pray that my suggestion is not offensive to you. I just thought this information may be helpful in some way. God bless you and your son!

[Jnkmnky]

The gluten connection to autism stems from the opiate effect the.... is it the peptides?.... have on the brain. That's why some people with celiac disease have symptoms that resemble mild forms of autism. My son had that. They appear drugged, out of it. I believe an overabundance of peptides circulate in the blood stream, reach the brain, cross the brain blood barrier due to sheer volume and cause this dopeing effect. Verbal skills may be improved in autistic children who go gluten free due to the elimination of peptides. Oh, I believe the peptides get unleashed due to the leaky gut issues, caused by inflammation. Apparently autistic children, even those without celiac disease, are prone to leaky gut.

[carrielynn]

Sorry.  I thought you were being defensive.  I still do, but I guess it would have been better not to try and talk to you about it twice.

<{POST_SNAPBACK}>

I just want to tell you how much I appreciate that you took the time to respond. Thank you very much.

--Carrie

[carrielynn]

I do not know the entire situation in regards to your child, but my best friend teaches pre-schoolers with autism.  Several of her students also suffer from celiac (the two are apparently linked).  Their reaction to gluten is behavioral and not GI.  She says that when they ingest gluten, their behavior is completely different.  Has your doctor suggested having him tested for this?

As I said, I obviously do not know your son and I pray that my suggestion is not offensive to you.  I just thought this information may be helpful in some way.  God bless you and your son!

<{POST_SNAPBACK}>

Thank you for these thoughts. We have had our son tested for celiac disease and he did test positive. His symptoms are skin-related. He was not diagnosed as having the dermatitis herpetiformis version of celiac, but I believe that's what it is after looking at pictures of it. But the blood tests are definitely positive for celiac. He does not have the classic GI symptoms. He was never flagged in preschool as having academic or behavorial issues.

We have discovered after removing gluten and dairy that his mood has improved dramatically. We had not realized how moody he had gotten... it just creeped up on us and we were used to it. He is now a joy to be around. He has a lot more energy. We are so grateful that we got this diagnosis... we had been to 3 MDs and none of them had tested him for celiac. I ran into a person at a party who saw him and she was the one who suggested we have him tested for that and she gave us a referral to a good doctor who understands this disease.

Thank you for your kind thoughts.

--Carrie

[carrielynn]

Carrie:

Please keep in mind that teachers are advocates for children - they are not in education to make children and their parents miserable.  You are absolutely correct in realizing that the teacher does not know your child as well as you do (a couple of weeks vs. 5 years!) but the teacher is not "out to get you."  Also keep in mind that the teacher is drawing from his/her past experiences with other children when an assessment is made.  Perhaps this teacher has never had a child who had celiac disease and isn't aware of possible developmental advancements that can be made once a gluten-free diet has begun.  You mentioned special services - these services are not always provided one-on-one but in "group" sessions and a student must be "classified" for these services to be provided - you may not what this "label" for your child if waiting a year is what is warrented - it is quite a process to "declassify" a student.  Yes, I am a teacher and this is my "professional" side speaking.

As a mother of a five year old daughter who is about to start kindergarten I can only imagine how frustrating it would be if a teacher didn't realize the obvious potential my child has.  But being on both sides of the fence I would listen very carefully to what the educators were telling me, digest the info, do my own research (such as you are doing) and then try to have a calm discussion with all involved.  What does your pediatrician have to offer to this dilemma?

In regards to your question regarding develpmental advancement once healing has begun I have absolutely no idea.  Sorry!  I only hope that you can find the information you need.  And if the recommendation of "holding back" your child is strongly made, realize that many children start a year later simply because of their age or size - nothing to do with their cognitive ability.  A strong, positive beginning is so essential for a lifetime love of learning!  Best wishes!

<{POST_SNAPBACK}>

I really appreciate your telling me about the teacher's viewpoint because it is definitely something I like to keep in mind. I am always trying to put myself in other people's shoes. (I've done some teaching myself and am currently doing volunteer work in support of K-12 education at the university level.) And I know that this class size has exceeded the state maximum size and she's pretty overwhelmed by the number of students in the class -- her words. That is why I am staying in constant contact with her and have been going out of my way to work with him on the issues she's raised.

You're right; she doesn't know anything about celiac disease. She asked me to spell it for her. We told her that we believe his delays are due to this and that we were witnessing a very positive transformation that we were encouraged by... and that is why we didn't want to pull him out of the class until we gave him some more time.

Our pediatrician doesn't appear to know much about celiac so I don't trust him to give an accurate opinion about the developmental delays. (I think he's a good doctor and we will continue to see him, but he is not the expert we need here.) We have made an appointment with another doctor who came highly recommended by the celiac community here and hope to get some good information that we can provide the school.

As for the labeling -- that is an excellent point you've made about having a hard time "declassifying" a child and I will definitely keep that in mind. I have talked to other parents who were told their child might need to be held back (this was last year) and they said they were offered these services in their parent/teacher conference. We were not offered any additional help or advice by this teacher. Her only recommendation was to put him back in preschool.

We've got a lot of work to come up to speed... we're still learning about celiac disease and the "gotchas" and now we're trying to navigate the school system and understand what is best for our child. I firmly believe that if he is still experiencing problems by the middle of the year then holding him back will be a good idea. I totally agree that giving him a good start is the best thing we can do for him.

Thank you so much for your comments.

--Carrie

[carrielynn]

My son is in first grade now, but last year they really expected alot of little 5 year olds.  In kindergarten, they were working on pre-reading, sight word memorization, addition and subtraction.  I was so thankful we had put Jack in a good pre-k, because he would have been terribly behind had he not already learned his letters.  Kindergarten is so different now than when I was little.....I remember the alphabet people, but that seems to be pre-school stuff now!  I am really shocked how much they try to cram in at such a young age.  My little boy had a rough transition in the first few weeks of kindergarten, and he didn't have any delays.  It's a tough time for any kid.

I don't have much advice for ya, since my celiac daughter still has a couple of years before she starts school.  But I do know that we will most likely be holding her back......she is so itty bitty, and at least a year or more behind.  She has been gluten free for 6 months, and the developmental progress has been slow.  From other parents I have talked to in my support group, usually some type of additional help is needed to help kids catch up.  Occupational therapy can help with fine motor skills if needed.  Emmie will need OT, speech therapy and physical therapy.  Every kid is different of course, but I think it is hard to just catch up on these skills on their own, and it can be incredibly frustrating for the child.  Just my thoughts.....as this is all new territory for us!

Hope things get better soon, school can be so tough these days!

<{POST_SNAPBACK}>

I guess this is another reason why I am frustrated with this teacher. The school can assist us in assessing whether he needs OT. She told us he's having problems writing and kept referring to fine motor skills. If this is really a problem, then we need to know that and get additional help! I sat with him today and he wrote the entire alphabet and seemed to have a good time doing it. So I don't see what the problem is with the fine motor skills. He definitely needs to practice, that's for sure, so we're going to do that everyday.

My son is also a lot smaller than all the other kids, but my non-celiac child is smaller than most of the kids in his class too. I was always the tiny child in my elementary school... I am now a normal size, but I was small for my age for awhile. I can't tell if his small size is due to genetics or the celiac disease. Hard to know.

Thanks for letting me know about your developmental progress. I hope you continue to see positive progress yourself.

--Carrie

[Indea88]

We thought my child had autism, but what he has is Celiac and once we started him on the gluten-free diet his "autism" disappeared. All along what I was seeing cognitively and behaviorally was Celiac. I am still amazed at how he is a completely different toddler since hes been gluten free...

[Kingschild]

I'm having such a hard time. My daughter was diagnosed with celiac disease in June. We have YET to get her completely gluten-free.

We're going to a doctor on Wednesday and I hope he can help. I just feel so overwhelmed right now.

Do I completely change our kitchen to gluten-free? Should we all go gluten-free, not just my daughter? She gets so angry when I tell her she can't eat something.

Any help, tips, suggestions would be GREATLY appreciated.

Thanks,

Mysti

[Happy]

My son has allergies which are to the same foods that a Celiac is allergic to. He has been diagnosed this previous year with Aspergers which is a form of Autism. When he eats the foods that he is allergic to he shows the symtoms of Aspergers much worse than when we keep him away from the foods that he is allergic to. His symtoms are related to social symtoms and funny quirks as you mention that are not readily accepted by others. He was not as socially mature as others.

Others previously tried to label him with ADD - but I knew that it just didn't fit. When I read about Aspergers - the picture was much clearer and then I read a book about a mother who had a son who showed full blown autism when he ate foods that were the same as what Celiacs are allergic to. There's not yet enough medical evidence to support that food can do that - but I truely believe that it can.

I do recommend him going on a diet to remove those allergins and to also have him tested for food allergies. To my surprise - Ketchup which contains tomatoes is also a culprit and that was one of his most favorite items as well a spaghetti and pizza. These not only affect his behavior but also cause a rash that is called keratosis pilaris to break out on his skin which looks like tiny pimples. He had that all his life since he was born and I didn't know what it was until it became so bad that I could no longer control it and it began to look like exzema. That was when I decided to have him tested for food allergies. I was surprised to find out that he was allergic to wheat, soy, eggs, tomatoes, cabbage, & apple juice.

I can notice a big difference in his behavior and mood swings when he doesn't eat the bad for you stuff as we call it. Just keep reading all that you can find on it. There's some great books on Aspergers that can shed some light on what you might be noticing in your son's behavior. Sometimes he just can't focus as well and then I say "Ah! you had something today that you weren't supposed to have. What was it?" and he'll let me know what he had.

If you'd like - I could recommend some good reading materials. I know that it has helped me and also helps with explaining to others better that the foods not only make him sick but they also affect his behavior and social issues.

Most people don't know what Celiac is nor Aspergers - but we just have to educate them and be the best advocate for our children that we can.

My 5 year old son was diagnosed with celiac about 6 weeks ago and he's been gluten free since then (to the best of our knowledge).  His mood and energy have improved, but his skin still looks pretty bad. (I believe he has the DH form of celiac... his symptoms were not gastrointestinal.  He was not officially diagnosed with DH, but I'm pretty sure that's what it is.)

He just entered kindergarten 2 weeks ago.  The teacher called a parent/teacher conference with me and my husband today, which I thought was rather quick.  She wanted to let us know how behind our son is emotionally and academically.  She said he cries often, he doesn't know all his letters, and he refuses to do his work (basically just coloring and crafts).

We tried to tell her about the celiac situation and that we think it could be the reason for him being a bit behind the other kids.  She didn't even know what celiac meant and asked for us to spell it for her.  I personally think he'll be fine and that he'll catch up now that he's starting to feel better.  But I wanted to check with people here about their experiences with their children.  Our son is definitely emotionally immature (relatively to the other children -- I can see this), he's smaller than the other children, and he does have some behavioral quirks that are causing some problems.  Can we expect these things to resolve pretty quickly now that we know what's going on with the celiac situation?  Does anyone else have a similar experience they can share?

Thanks,

Carrie

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[carrielynn]

My son has allergies which are to the same foods that a Celiac is allergic to.  He has been diagnosed this previous year with Aspergers which is a form of Autism.  When he eats the foods that he is allergic to he shows the symtoms of Aspergers much worse than when we keep him away from the foods that he is allergic to.  His symtoms are related to social symtoms and funny quirks as you mention that are not readily accepted by others.  He was not as socially mature as others.

Others previously tried to label him with ADD - but I knew that it just didn't fit.  When I read about Aspergers - the picture was much clearer and then I read a book about a mother who had a son who showed full blown autism when he ate foods that were the same as what Celiacs are allergic to.  There's not yet enough medical evidence to support that food can do that - but I truely believe that it can.

I do recommend him going on a diet to remove those allergins and to also have him tested for food allergies.  To my surprise - Ketchup which contains tomatoes is also a culprit and that was one of his most favorite items as well a spaghetti and pizza.  These not only affect his behavior but also cause a rash that is called keratosis pilaris to break out on his skin which looks like tiny pimples.  He had that all his life since he was born and I didn't know what it was until it became so bad that I could no longer control it and it began to look like exzema.  That was when I decided to have him tested for food allergies.  I was surprised to find out that he was allergic to wheat, soy, eggs, tomatoes, cabbage, & apple juice.

I can notice a big difference in his behavior and mood swings when he doesn't eat the bad for you stuff as we call it.  Just keep reading all that you can find on it.  There's some great books on Aspergers that can shed some light on what you might be noticing in your son's behavior.  Sometimes he just can't focus as well and then I say "Ah! you had something today that you weren't supposed to have.  What was it?" and he'll let me know what he had.

If you'd like - I could recommend some good reading materials.  I know that it has helped me and also helps with explaining to others better that the foods not only make him sick but they also affect his behavior and social issues.

Most people don't know what Celiac is nor Aspergers - but we just have to educate them and be the best advocate for our children that we can.

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Thank you for your thoughts.

My son has never exhibited any symptoms of autism -- classic or Aspergers. He's hit all his milestones so far. (I have read that celiac can manifest itself as symptoms of autism, so thank you for pointing that out.) I had him assessed by a counselor from our school and she says the only thing she can tell that is causing a problem is that he looks a bit smaller physically than the other children. She said his work is within the "normal" range, but also noted that "normal" for kindergarten is a very wide range. So time will tell and it's hard to tell at this time.

We also had our son extensively tested using all the allergy tests -- IgG, IgE -- and we have taken him off the foods that he tested positive for. We noticed a huge difference in his mood and energy level after he went gluten-free. We had removed alot of the offending foods (not gluten) before without noticing any difference, so it's hard to tell whether the food allergies are affecting him. I do think seasonal allergies are affecting him quite a bit right now.

As I suspected, he is starting to do a lot better after he's gotten used to his classroom. The behavioral problems are dissipating, which leaves me to believe it was a transitional issue. He hasn't been crying at all,which is a good thing. He is coming home and telling me that there are some kids who have called him a baby because he's smaller. So we're working with him on how he can effectively respond to that.

Thank you again!

Carrie

[Jnkmnky]

A pencil gripper helps with writing. They sell formed ones as well as spongey ones. My son's writing improved immediately with the harder, rubber grip on his pencil. Sometimes the issue is speed. Is the child writing fast enough to keep up with the other students in the class.