Sensory Integration Dysfunction And Gluten Intolerance

[wonkabar]

I'm just curious if anyone has a child specifically with sensory issues and/or ADD in conjunction with gluten intolerance/Celiac Disease. My apologies if something of this nature has previously been posted!! Thanks for your input.

[Guhlia]

YES, YES, YES!!! Myself as a child and my daughter before going gluten free. I was extremely tactile defensive pre-diagnosis, though I never suffered from any academic or speech delays. I was destructively impulsive and hyperactive. Even as an adult I suffered from these things. I have also been diagnosed as ADD, though that has gotten much better since going gluten free. My daughter was some of these things to a much lesser extent, though she refused to play with anything odd-textured or eat anything with sauce or even ketchup. She only ate dry foods after they were introduced. These tendencies completely disappeared within two weeks of being gluten free. Yea! She has not officially been diagnosed with Celiac, I have. I hope this helps.

You may find this link interesting:

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[fullofhope]

Speaking as a special ed teacher, my son would have been diagnosed with add or sensory integration disfunction had he continued to eat gluten! I myself have sensory issues that have gotten better since going gluten free, but elliot really takes the cake prior to going gluten free.

Janel

[Shalia]

I'm an adult with SID and ADD. It took a bit of time before I truly realized how the world wasn't quite so bright and loud, but now I'm back to my sensory defensive self in 30 minutes if glutened.

I'm taking about 1/8 the amount of Ritalin I used to take (I *am* a college student, so I take it occationally) but in general most of my ADD symptoms have gone away too.

I've only been gluten-free for two months. It's truly amazing what this diet has done for my sensory issues. No life in earplugs and sunglasses!

Shalia

[debmidge]

I am familiar with ADD, please explain SID.

thanks.

[Nic]

My youngest son who has not been diagnosed yet (blood came back negative) has always had sensory issues. He does not tolerate well anything textured or anything with a strong taste. He gags and vomits. I have to specify which antibiotics he can handle because for example Zithromax has a gritty feel to it and a strong taste (I believe cherry) and he throws it up every time. He also does that with red tylenol. As a younger child, he is now 4, he used to lick everything from the couch to the walls. It would drive us crazy. He is also developmentally delayed (gross motor including speech) and has hypotonia.

Nicole

[Shalia]

I am familiar with ADD, please explain SID.

thanks.

Here's some of the symptoms. Or at least one websites version.

Below is a list of other behaviors exibited by children with SID/DSI:

-- Loves to spin, swing and jump--this will seem to calm them down after several minutes.

-- Complains of how clothing feels, does not like tags left in their clothing and have to have their socks on just so, or a certain kind of sock.

-- Picky eaters--get stuck on one certain food and is basically impossible to get them to eat anything else.

-- Oversensitivity to smells. Or undersensitivity--may sniff people, objects, food.

-- Oversensitivity to sounds--will frequently cover ears. Or undersensivity.

-- May have an exceptionally high pain tolerance

-- May tire easily

-- Unusually high or low activity level

-- Resists new situations

-- Problems with muscle tone, coordination, motor planning

-- Can be very impulsive or distractible.

-- Persistently walks on toes to avoid sensory input from the bottom of the feet. This can also be a sign of cerebral palsy if the child is unable to bring their feet down flat when asked or trying.

As with *all* mental health issues and disorders, you don't need to have all of them, and you can have some significantly worse than others. Mine is oversensitivity to sound, smell, visual stimuli, and I walk on my toes. But everyone can be just enough different to drive doctors insane. (Sounds like Celiac, doesn't it? )

[wonkabar]

I am familiar with ADD, please explain SID.

thanks.

Sensory Integration Dysfunction (SID) is the inability to simultaneously organize and process (integrate) sensory stimuli (auditory, visual, tactile, vestibular and proprioceptive) and execute the input in an appropriate manner. Senosry stimulus that may seem benign to us can be amplified or exagerated 100 fold for someone with SID. For example, a washing machine filling with water may seem like a non-descript event to you and I, however to the child who is auditorally defensive that very same sound could be painful for them to hear. People with SID very often have diagnoses such as ADD and PDD (Pervasive Developmental Delay) in conjunctin with SID just as an example. It is also very common for preemies to experience sensory difficulties as their Central Nervous Systems were still quite immature at birth. There are other theories/studies regarding the correlation to prematurity and SID.

People with sensory difficulties can exibit sensory seeking or sensory defensive behaviors but can also have difficulty modulating (regulating) both types of senosry input. Sensory seeking behaviors can be things like licking, banging, spinning and jumping to name a few. Sensory defensive behaviors can be refusing to wear certain fabrics or things with tags, refusing to eat/touch certain textures/colors, not wanting to play on a swing or have feet off the ground and crying as a result of hearing certain sounds just to name a few. The issues related to SID can range from mild to severe.

[debmidge]

Here's some of the symptoms. Or at least one websites version.

Below is a list of other behaviors exibited by children with SID/DSI:

-- Loves to spin, swing and jump--this will seem to calm them down after several minutes.

-- Complains of how clothing feels, does not like tags left in their clothing and have to have their socks on just so, or a certain kind of sock.

-- Picky eaters--get stuck on one certain food and is basically impossible to get them to eat anything else.

-- Oversensitivity to smells. Or undersensitivity--may sniff people, objects, food.

-- Oversensitivity to sounds--will frequently cover ears. Or undersensivity.

-- May have an exceptionally high pain tolerance

-- May tire easily

-- Unusually high or low activity level

-- Resists new situations

-- Problems with muscle tone, coordination, motor planning

-- Can be very impulsive or distractible.

-- Persistently walks on toes to avoid sensory input from the bottom of the feet. This can also be a sign of cerebral palsy if the child is unable to bring their feet down flat when asked or trying.

As with *all* mental health issues and disorders, you don't need to have all of them, and you can have some significantly worse than others. Mine is oversensitivity to sound, smell, visual stimuli, and I walk on my toes. But everyone can be just enough different to drive doctors insane. (Sounds like Celiac, doesn't it? )

Next question: what level of these symptoms remain as this SID person gets older?

[wonkabar]

As with *all* mental health issues and disorders, you don't need to have all of them, and you can have some significantly worse than others. Mine is oversensitivity to sound, smell, visual stimuli, and I walk on my toes. But everyone can be just enough different to drive doctors insane. (Sounds like Celiac, doesn't it? )

SID is *not* a mental health issue or disorder. It can certainly have an impact on a person socially and academically, but it is not comprable to a Dx such as BiPolar Disorder or Depression. SID has a neurological etiology that is directly related to the central nervous system's inability to effectvely process and organized sensory stimuli. It also is not Dx by a physician. SID should only be Dx by an Occupational Therapist who, in addition to their original schooling, has aditionally been trained and certified to evaluate and Dx SID. While physicians may have knowledge of SID, they are in no way qualified to Dx it. I'd personally be very leary of a physcian who stated they could make such a Dx.

[wonkabar]

Next question: what level of these symptoms remain as this SID person gets older?

The severity of symptoms and longevity of symptoms is truly specific to each person. SID can look a little different for each person, but the general undercurrent is present in everyone. It is exclusively about the inability to organize and process the sensory input within our environment that we continuously receive. Certainly a child who experiences severe SID is going to have more difficulty with sensory experiences as they get older vs the child who is more mildly affected. That being said, there are MANY people who are living with SID and ADD who live very happy, normal lives. Typically, as your central nervous system matures and you mature emotionally you learn how to cope with and self-manage sensory related issues. We're also living in a time where there is a tremendous amount of knowledge and research regarding SID. Where as years ago there simply wasn't.

We all are "sensory people" for the lack of a better phrase! That's why some of us like to walk barefoot, won't eat rice pudding, don't like sand, love massages, don't like rollercoasters, love to get "messy", etc. Everything in our environment is sensory oriented...we all see, hear, taste, touch and feel. When dealing with sensory stimulus becomes a Dx issue is when it directly impacts your life functionally.

I taught self-contained special ed for six years before I had my, now. 3.5 year old son who has Sensory Modulation Dysfuntion, ADD and a mild language delay in addition to being severly gluten intolerant. He was a 32 week preemie. Most of the kids I worked with had SID to some degree. I've worked with kids who were Autistic, ED, had ADD, Asperger's Syndrome, Angelman's Syndrome in addition to learning disabilitites. They ALL had SID and benefited from a Sensory Diet throughout the day.

I started this thread more as a "quasai-study" for myself to see if anyone else with SID and ADD had Celiac Disease or Gluten Intolerance. I'm so glad several people responded!

[Nic]

Could a person with SID "outgrow" the severety of syptoms as they get older? My son was being seen by an occupational therapist when he was with early intervention but I don't recall hearing about SID but he did have the licking issue, textured food and strong taste issue, and poor muscle tone. At 3 he was still licking, now at 4 he has stopped. This is a child with symptoms of many different diseases and disorders and has been tested for all and has come back negative for all. So when I hear of things like this for example, that resemble his behavior, my ears perk up. I might never know the cause of all his troubles but I can't stop hoping we will.

Nicole

[ravenwoodglass]

Here's some of the symptoms. Or at least one websites version.

Below is a list of other behaviors exibited by children with SID/DSI:

-- Loves to spin, swing and jump--this will seem to calm them down after several minutes.

-- Complains of how clothing feels, does not like tags left in their clothing and have to have their socks on just so, or a certain kind of sock.

-- Picky eaters--get stuck on one certain food and is basically impossible to get them to eat anything else.

-- Oversensitivity to smells. Or undersensitivity--may sniff people, objects, food.

-- Oversensitivity to sounds--will frequently cover ears. Or undersensivity.

-- May have an exceptionally high pain tolerance

-- May tire easily

-- Unusually high or low activity level

-- Resists new situations

-- Problems with muscle tone, coordination, motor planning

-- Can be very impulsive or distractible.

-- Persistently walks on toes to avoid sensory input from the bottom of the feet. This can also be a sign of cerebral palsy if the child is unable to bring their feet down flat when asked or trying.

As with *all* mental health issues and disorders, you don't need to have all of them, and you can have some significantly worse than others. Mine is oversensitivity to sound, smell, visual stimuli, and I walk on my toes. But everyone can be just enough different to drive doctors insane. (Sounds like Celiac, doesn't it? )

You just described my DS and I perfectly for the most part. A lot of this sort of thing has calmed down a great deal since we became gluten-free. The sensitivity to sound and textures in particular.

[wonkabar]

Could a person with SID "outgrow" the severety of syptoms as they get older? My son was being seen by an occupational therapist when he was with early intervention but I don't recall hearing about SID but he did have the licking issue, textured food and strong taste issue, and poor muscle tone. At 3 he was still licking, now at 4 he has stopped. This is a child with symptoms of many different diseases and disorders and has been tested for all and has come back negative for all. So when I hear of things like this for example, that resemble his behavior, my ears perk up. I might never know the cause of all his troubles but I can't stop hoping we will.

Nicole

Nicole, I agree; we can't ever give up hope!! I am surprised, though, that the OT didn't "flag" your little guy while he was receiving EI services. Did she recommend any type of activites (ie, sensory diet) for your son that would help minimize the sensory behaviors? Licking and being defensive to tastes and textures are hallmarks of SID.

My son, Zachary, was a 32 week preemie. He was Dx with Sensory Modulation Dysfunction at 2 1/2, has a mild language delay and, I have NO doubt, ADD. He's also Gluten Intolerant; he has an auto-immune reaction to gluten. In addition to Early Intervention services for OT, PT and Speech, we also took him to a Sensory Gym once a week. He worked 1:1 with an OT who was specifically trained and certified to evaluate and Dx SID. Not all OT's have this additional schooling and certification. He's doing great!! Zachary is auditorally defensive to certain sounds, has an oversensitivity to vestibular input and an undersensitivity to proprioceptive input as well as has a decreased body awarenwess in space. ALL of these sensory issues have improved dramatically as his central nervous system has continued to mature, due to the OT sessions at the Sensory Gym and utilizing a Sensory Diet. The more exposure and regulated sensory input a child with SID receives the greater likelihood there is for that child to learn to organize and process sensory stimulus more appropriately. As a child matures, they learn to cope with and self-manage their sensory issues. So, yes, I do believe the symptoms can improve dramatically, but I don't believe they ever disappear completely. I base this opinion on my experience with my own son, my 33 year-old brother who has ADD and as a self-contained special education teacher.

If you're interested in looking into SID further, I would highly recommend reading The Out-of-Sync Child. Your local library should have a copy of it, and you can also find it at Barnes and Noble or Amazon. It is a teriffic book about SID and gives oodles of information and suggestions. It's been a great tool for me as a mom and special education teacher. I hope this helped!

[elonwy]

I was sitting talking with a friend yesterday, who I don't see that often, I've seen him twice since going gluten-free. He looked at me, and said "This is the first time I've ever been able to have a conversation with you where you were able to stay on the same topic for the length of the conversation" I realized that I am not the spazz I used to be. I've known this person for ten years, and according to him, this is the best he's ever seen me look, physically and mentally. I realized that my ADD, or whatever it was, is pretty much gone. My dyslexia seems to have dissapeared as well.

Its sometimes hard to recognize that these things have changed without someone who's known you for a long time mentioning how much you've changed. I like my new calm brain. I'm also no longer distracted by shiny objects so easily.

Elonwy

[Nic]

Nicole, I agree; we can't ever give up hope!! I am surprised, though, that the OT didn't "flag" your little guy while he was receiving EI services. Did she recommend any type of activites (ie, sensory diet) for your son that would help minimize the sensory behaviors? Licking and being defensive to tastes and textures are hallmarks of SID.

My son, Zachary, was a 32 week preemie. He was Dx with Sensory Modulation Dysfunction at 2 1/2, has a mild language delay and, I have NO doubt, ADD. He's also Gluten Intolerant; he has an auto-immune reaction to gluten. In addition to Early Intervention services for OT, PT and Speech, we also took him to a Sensory Gym once a week. He worked 1:1 with an OT who was specifically trained and certified to evaluate and Dx SID. Not all OT's have this additional schooling and certification. He's doing great!! Zachary is auditorally defensive to certain sounds, has an oversensitivity to vestibular input and an undersensitivity to proprioceptive input as well as has a decreased body awarenwess in space. ALL of these sensory issues have improved dramatically as his central nervous system has continued to mature, due to the OT sessions at the Sensory Gym and utilizing a Sensory Diet. The more exposure and regulated sensory input a child with SID receives the greater likelihood there is for that child to learn to organize and process sensory stimulus more appropriately. As a child matures, they learn to cope with and self-manage their sensory issues. So, yes, I do believe the symptoms can improve dramatically, but I don't believe they ever disappear completely. I base this opinion on my experience with my own son, my 33 year-old brother who has ADD and as a self-contained special education teacher.

If you're interested in looking into SID further, I would highly recommend reading The Out-of-Sync Child. Your local library should have a copy of it, and you can also find it at Barnes and Noble or Amazon. It is a teriffic book about SID and gives oodles of information and suggestions. It's been a great tool for me as a mom and special education teacher. I hope this helped!

Hi, after turning 3 my son exited out of early intervention and entered our pre-k handicapped program in our school district. He receives PT, OT, Speech, and feeding therapy to help with his "food" issues. They have recommended different textured foods as a way to help him tolerate them better. But he still prefers soft smooth foods like pasta and if there is even one small piece of tomato in the sauce he will find it in his mouth and spit it out (which is by far better than the gagging and vomiting he used to do). He had meningitis when he was 5 wks and the doctors all just blame that for his problems since no one ever found a cause even though it is very unlikely that viral meningitis could cause serious problems. We are trying now to find out if he is Celiac like his brother and if so maybe that is the cause. Doctors always say that in most cases of a developmentally delayed child with hypotonia they never find the cause. That just doesn't sit right with me.

Nicole

[Nic]

Hi, after turning 3 my son exited out of early intervention and entered our pre-k handicapped program in our school district. He receives PT, OT, Speech, and feeding therapy to help with his "food" issues. They have recommended different textured foods as a way to help him tolerate them better. But he still prefers soft smooth foods like pasta and if there is even one small piece of tomato in the sauce he will find it in his mouth and spit it out (which is by far better than the gagging and vomiting he used to do). He had meningitis when he was 5 wks and the doctors all just blame that for his problems since no one ever found a cause even though it is very unlikely that viral meningitis could cause serious problems. We are trying now to find out if he is Celiac like his brother and if so maybe that is the cause. Doctors always say that in most cases of a developmentally delayed child with hypotonia they never find the cause. That just doesn't sit right with me.

Nicole

I just read an article on it and it is interesting because it mentioned crashing into objects. Which is something he used to do during the licking stage. He used to crash into walls and doors.

[wonkabar]

I just read an article on it and it is interesting because it mentioned crashing into objects. Which is something he used to do during the licking stage. He used to crash into walls and doors.

Nicole- "Crashing" is also a hallmark for SID. I would discuss all of these things with your son's OT or look for an OT who is trained and certified in evaluating/Dx SID. It certainly can't hurt. Our insurance did not cover Zachary's OT eval so we had to pay out of pocket...$300. Believe it or not, this was quite reasonable and she is fabulous.

I'm certainly not an OT, but it sure sounds like your little guy has got SID. Ironically, my bestfriend's daughter also has SID (there are some weird paralells in our lives! ); her daughter used to lick EVERYTHING...doors, walls, appliances, windows, furniture, etc. She doesn't do that anymore but still has significant sensory issues. Her daughter is also a self-limiting eater due to oral defensiveness to many foods (colors and textures) Zahcary's sensory issues are not as significant but certainly do create difficulty for him at times. He was specifically Dx with Sensory Modulation Dysfunction which involves being able to regulate different types of sensory stimulus. He's hypersensitive to a couple of things and undersensitive to others.

Zachary started preschool in April. He's receiving speech and OT once a week. Working with the OT at the sensory gym and our solid understanding of SID and the subsequent ways we can help him has had a tremendous impact on his development. Good ol' maturation of the central nervous system has certainly worked to his benefit as well!

[mythreesuns]

Senosry stimulus that may seem benign to us can be amplified or exagerated 100 fold for someone with SID.

FYI, I agree with all of this, but keep in mind that SID can go the other way as well. I have a 2 y.o. who also has SID, but he is UNDERsensitive to almost every sensation--touch, taste, motion, etc.

This is a kid who LOVED the taste of Windex, didn't respond to sounds not because he didn't hear them but because they didn't always "stimulate" him enough, and cannot sit on my lap without pushing against me just to feel me. He screams because he enjoys the sound. He LOVES to hear others scream as well! We need to schedule in rough play with him because he cannot settle for the night without an enormous input of sensations.

One day he walked around all day with his pinky toe bent back toward the outside of his foot!!! We didn't know it because it didn't hurt him, although I assure you any other child would have screamed the moment it was pushed back by his shoe! That toe has never been the same...

[Shalia]

FYI, I agree with all of this, but keep in mind that SID can go the other way as well. I have a 2 y.o. who also has SID, but he is UNDERsensitive to almost every sensation--touch, taste, motion, etc.

This is a kid who LOVED the taste of Windex, didn't respond to sounds not because he didn't hear them but because they didn't always "stimulate" him enough, and cannot sit on my lap without pushing against me just to feel me. He screams because he enjoys the sound. He LOVES to hear others scream as well! We need to schedule in rough play with him because he cannot settle for the night without an enormous input of sensations.

One day he walked around all day with his pinky toe bent back toward the outside of his foot!!! We didn't know it because it didn't hurt him, although I assure you any other child would have screamed the moment it was pushed back by his shoe! That toe has never been the same...

Too true. I'm completely sensory defensive, and my son sounds like yours. (He's autistic as well, so I'm sure that's part of the reason he needs so much more stimuli.) He needs tons of stimulus to even handle a day. It's really a problem here because loud sounds have me writhing in pain and crying, and he needs them to survive.

Although, I must say, the tasting windex is new. Is Windex gluten-free?

Hope your son is doing well now...

Shalia

[mythreesuns]

Is Windex gluten-free?

ROFLAMO!!!!

This happened well before my own personal gluten concerns, otherwise I would've been checking the label! LOL

Given your own family dynamics, you might be able to appreciate this mix:

*12 y.o. Asperger's child who is extremely sensory defensive

*9 y.o. Tourette's child

*2 y.o. with low sensory registration and limited language skills whose primary language is screaming

*33 y.o. with a migraine

*very small sedan

[Guest Robbin]

Toni, omgosh, you are a busy, busy girl. I was wondering what the differences are with Aspergers and Sensory Integration-they both seem so similar. I wish I would have had this information when my oldest son was a little one. He had almost every symptom on that list. He was dx with type 1 diabetes at age 9 and I was told by every teacher he had that he was ADD, but his dr. said no he wasn't and he was never put on anything. He seems to be much, much better now at age 21, but wish he would go gluten-free. What can you do at that age, but give them the info and hope for the best? Take care of your own health, too, Moms--it is a huge drain, I know.

[Fiddle-Faddle]

Wow, Nic--when my daughter was 5 weeks old, she ran a fever, and the pediatrician immediately had her admitted to the hospital and treated for bacterial meningitis--which it wasn't. They determined on the 4th day that it was 5th disease. I do understand why they felt they had to treat it as meningitis, though. And I also found out that between 4-7 weeks, the immunity in breast milk drops, but the baby's own immune system doesn't start to kick in until 7-8 weeks. Wish I'd known that earlier.

This year, (she's 5) she has developed some tactile issues--mostly, itchiness in response to non-cotton clothing, and extreme itchiness when she gets upset. She also can't seem to feel when it's time to go pee, although she will pee on the toilet just fine when I ask her to.

I have some mild tactile issues of my own (Itchiness, I hate being touched on my arms, and I can't stand music played at a level that seems acceptable to everyone else (say, at the health club). These all only seemed to start in the last 10 years or so--and I've only had signs of gluten intolerance the last couple of years. Coincidentally (or not), the last couple of years were when I started baking bread and serving pasta (because my kids liked it so much.

Both my oldest son and my daughter need warm bodies to sleep with them. The son makes do with the cat; the daughter is still little enough to get away falling asleep with one of us. The middle kid has always had a major hair fetish, and always put himself to sleep playing with my hair.

Hmmmm....

[Guest Robbin]

Omg, Alison, my oldest son had to play with my hair to fall asleep too! I used to get so tired and neck cramps, so one day gave him my mothers' wig to hold and he freaked out so bad! I never knew another one like that -wow, the symptoms that are so obscure and strange with some of these things are unbelievable. He would stand and look up at ceiling fans for ages, and loved to stare at windshield wipers moving. He also loved pinwheels and would tip his trikes over and spin the wheels for ages. This is so eye-opening. Thank you so much for this information everyone.

[Fiddle-Faddle]

I thought I would sort of nip things in the bud by cutting my hair short. BAAAAD idea! I've compromised--shoulder length (used to have long braids)!