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Celiac Disease And Dyspraxia

mikyraso

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mikyraso Rookie
mikyraso
Posted

My 6yr old Daughter was just diagnosed with celiac disease about a month ago. She was diagnosed with Dyspraxia and 2,has nodules on her vocal cords, and we believe she is having processing difficulties in school. Does anyone know if there is any relationship between celiac disease and these conditions. I am feeling so OVERWHELMED right now . I don't know if we should be adding or taking anything out of her diet other than Gluten.And I don't know where to go to get my answers, if there is any. Any help or advice would be GREATLY appreciated.

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koober1 Newbie
koober1
Posted

WOW you just described my son! He is only 3, but before we put him on the diet and supplements, he didn't talk, had sensory issues (would drool when overwhelmed, didn't smell things, didn't feel temperature or pain) He was diagnosed with verbal dyspraxia or apraxia. But now he is speaking in small sentences and is just doing fantastic. My dr calls it gluten intolerance, but from doing research I'm pretty sure he has celiac and that is what caused his apraxia from having vitamin deficiencies.

mikyraso Rookie
mikyraso
Posted
  • Author

WOW you just described my son! He is only 3, but before we put him on the diet and supplements, he didn't talk, had sensory issues (would drool when overwhelmed, didn't smell things, didn't feel temperature or pain) He was diagnosed with verbal dyspraxia or apraxia. But now he is speaking in small sentences and is just doing fantastic. My dr calls it gluten intolerance, but from doing research I'm pretty sure he has celiac and that is what caused his apraxia from having vitamin deficiencies.

Boy does it feel good to know we are not alone. Are you in early intervention? They helped us quite a bit.

Here is a little of our background.

We started our journey with my daughter from the time she was born. She started out with feeding issues, she did not gain weight and didn't double her birth weight (7 lbs 4 oz.) until she was close to 8 months. She couldn't thrust her tongue while breast feeding and she didn't suck while bottle feeding she "munched or smacked".So we started with a speech therapist at 2 months. She also had many food sensitivities when we started foods.

She also had low muscle tone throughout her body. Her physical development has been slow (she didn't crawl until the week of her 1st birthday). We started PT at the same time as Speech.We started OT @ 11 months. She also has had many sensory issues. She didn't register hot/cold either. She also has had vocal issues since she started talking. It took 2 years and 4 doctors before we had a diagnosis of Dyspraxia. We only learned about her celiac disease a month ago.

My daughter is 6 now and she receives PT, OT, and Speech. Since being diagnosed with celiac disease it really has made me wonder how much of her struggles can be attributed to celiac disease. I wish you all the luck with your son. Keep your chin up and email any time to talk more if you want.

koober1 Newbie
koober1
Posted

My son was born 3 months premature. So alot of his "issues" we blamed on that. He was on alimentum formula cause he had such bad reflux. But I think it was a gluten intolerance now. He had issues sucking (I had to put him on cereal nipples so it was easier for him to get the milk out of the bottle) He's been in speech therapy since he was 18 months old. And we had NO progress till I put him on a probiotic when he was 3. He got 20 words in 1 week. Prior to that, all he could say was "mmmmm" He has always been skinny but had a distended belly. I thought it was cause he was so skinny, when he would eat (which he eats a ton) it would just look big. But according to my dr, your belly should never look like that. Which makes me mad cause our pediatrician never said anything about it. We see a bio-medical dr now and he is a god send! My son has not been diagnosed with celiac yet. But with gluten intolerance, but I wonder. I hate to take him off his diet for tests.

koober1 Newbie
koober1
Posted

I also forgot to mention he has low tone too. Was in OT for a year. But when he got re-evaluated (after we started supplements and diet) he scored so well he didn't qualify. I couldn't blame them. He could do everything they asked of him.

SGWhiskers Collaborator
SGWhiskers
Posted

As a speech pathologist, I have not seen literature associating dyspraxia with celiac. There may be some out there I have not seen though. There is some evidence of speech language impairments in adults related to celiac and gluten ataxia. There is also evidence that gluten ataxia causes lesions in the brain. I'm guessing the association between celiac and dyspraxia (as well as other speech-language disorders) is understudied.

As a celiac with neurologic issues, I would not doubt a possible association. I developed mild slurring, stuttering, and mild to moderate word finding problems as my symptoms became more severe. It really made communicating with other speech pathologists embarassing. Not all my symptoms have returned to baseline. My vitamin levels were normal for the most part. I'm just a celiac with neuro problems instead of GI problems.

The good news is that if there is a connection, now that your daughter is on the gluten-free diet, she will only improve.

ASHA.org is the national speech pathology website and there is lots of information for what you can do at home on there.

Consider getting her vitamins tested to see if she is low in anything specifically.

The best thing you can do is treat the celiac and treat the dyspraxia and processing issues. The more aggressively and sooner the better on the dyspraxia and processing is my opinion. The sooner those are under control, the less difficulty she will have with all aspects of school and especially language which is so important to get well established in the early grades. Read up and start a 10 minute/day home exercise games and you will be ahead of this in no time. I've found that parents who schedule fun, brief activities daily with their children make better progres than families who make structured speech work time for 30-45 minutes a night or than families who do nothing at home. The 30 minute kids get stressed and resist therapy. The zero home intervention kids just take longer.

Kelleybean Enthusiast
Kelleybean
Posted

Hi -

I don't know about dyspraxia specifically, but my son is autistic. I know it's competely different, but some parents have reported big improvements in their child's speech after starting a gluten free diet with their autistic kids. So it wouldn't surprise me at all if there was a link for other conditions too.

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mikyraso Rookie
mikyraso
Posted
  • Author

As a speech pathologist, I have not seen literature associating dyspraxia with celiac. There may be some out there I have not seen though. There is some evidence of speech language impairments in adults related to celiac and gluten ataxia. There is also evidence that gluten ataxia causes lesions in the brain. I'm guessing the association between celiac and dyspraxia (as well as other speech-language disorders) is understudied.

As a celiac with neurologic issues, I would not doubt a possible association. I developed mild slurring, stuttering, and mild to moderate word finding problems as my symptoms became more severe. It really made communicating with other speech pathologists embarassing. Not all my symptoms have returned to baseline. My vitamin levels were normal for the most part. I'm just a celiac with neuro problems instead of GI problems.

The good news is that if there is a connection, now that your daughter is on the gluten-free diet, she will only improve.

ASHA.org is the national speech pathology website and there is lots of information for what you can do at home on there.

Consider getting her vitamins tested to see if she is low in anything specifically.

The best thing you can do is treat the celiac and treat the dyspraxia and processing issues. The more aggressively and sooner the better on the dyspraxia and processing is my opinion. The sooner those are under control, the less difficulty she will have with all aspects of school and especially language which is so important to get well established in the early grades. Read up and start a 10 minute/day home exercise games and you will be ahead of this in no time. I've found that parents who schedule fun, brief activities daily with their children make better progres than families who make structured speech work time for 30-45 minutes a night or than families who do nothing at home. The 30 minute kids get stressed and resist therapy. The zero home intervention kids just take longer.

Thanks for all the advice. My daughter does receive voice therapy for the nodules, hoarseness, and poor vocal quality.The speech teacher is going to pick her up an extra day to address the processing issue. I will check out the website you suggested for added support at home. It is very encouraging to hear of your success and I am hoping we will see some changes as well. Oh other than the change in your diet did you do anything else? Thank you for all the great advoce:)

mikyraso Rookie
mikyraso
Posted
  • Author

Hi -

I don't know about dyspraxia specifically, but my son is autistic. I know it's competely different, but some parents have reported big improvements in their child's speech after starting a gluten free diet with their autistic kids. So it wouldn't surprise me at all if there was a link for other conditions too.

How old is your son? Has he been on the gluten-free diet for long? Just wondering how he has improved with the change in his diet?

mikyraso Rookie
mikyraso
Posted
  • Author

I also forgot to mention he has low tone too. Was in OT for a year. But when he got re-evaluated (after we started supplements and diet) he scored so well he didn't qualify. I couldn't blame them. He could do everything they asked of him.

That happened to us, ourshe qualified out, and then 3 months later she had to re-evaluated and they picked her back up. She started OT at 12 months. She was in OT for about 9 months when she scored "age-appropriate" in her skills. However we found that when she had any break in services she regressed in her skills (OT,PT, and Speech) and had to re-evaluated. Sure enough after each eval. she was picked up for services. When her new therapist picked her up she felt she had been released to soon. How is your son now?

  • 2 weeks later...
koober1 Newbie
koober1
Posted

That happened to us, ourshe qualified out, and then 3 months later she had to re-evaluated and they picked her back up. She started OT at 12 months. She was in OT for about 9 months when she scored "age-appropriate" in her skills. However we found that when she had any break in services she regressed in her skills (OT,PT, and Speech) and had to re-evaluated. Sure enough after each eval. she was picked up for services. When her new therapist picked her up she felt she had been released to soon. How is your son now?

My son is still doing great. He's catching and throwing a ball now, doing sumersaults, jumping..... these are things he couldn't do a couple months ago. And he's speaking in small sentences now.

Kelleybean Enthusiast
Kelleybean
Posted

How old is your son? Has he been on the gluten-free diet for long? Just wondering how he has improved with the change in his diet?

My son is turning 3 on Monday (which I still can't believe!). He's been gluten-free since January, casein free for about 3 weeks. We have not noticed a big difference, but we phased into the diet very gradually. So by the time we went completely gluten-free he had already been almost there for several months, so that may have masked any big improvement. We're not sure if we're going to stick with it or not. In a few months we are going to test by reintroducting gluten to get a better idea.

He is doing amazing though - the ABA therapy has helped for sure (I can't believe the progress he's made with it), and I suspect eliminating food dyes made a difference too. I do think the diet is helping too, just hard to know how much.

koober1 Newbie
koober1
Posted

If you want I put the website address to the blog I've kept going for my son, in my profile info. I've had it going since he came home from the NICU, but I would say the last year has documented our experience with bio-medical intervention and the diet, pretty well.

mikyraso Rookie
mikyraso
Posted
  • Author

My son is turning 3 on Monday (which I still can't believe!). He's been gluten-free since January, casein free for about 3 weeks. We have not noticed a big difference, but we phased into the diet very gradually. So by the time we went completely gluten-free he had already been almost there for several months, so that may have masked any big improvement. We're not sure if we're going to stick with it or not. In a few months we are going to test by reintroducting gluten to get a better idea.

He is doing amazing though - the ABA therapy has helped for sure (I can't believe the progress he's made with it), and I suspect eliminating food dyes made a difference too. I do think the diet is helping too, just hard to know how much.

You mentioned that you also put your son a casein free diet as well. What is that? I have read a few posts that also mention Casein Free but I don't know anything about it.

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