Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

tiredofdoctors!!!

I Remember Seeing A Previous Thread About Autism .

Rate this topic

Recommended Posts

I remember seeing a previous thread about Autism and celiac disease. My father called me tonight . . . he said that he had played golf with an old college buddy of his. He asked how everyone was doing, then asked my dad how I was doing and if they had found any diagnosis yet. My father told him that I had been diagnosed with Gluten Ataxia, and that it was the Gluten that was destroying my brain and retinas. Dad said the man looked at him really funny and got really quiet.

My dad said that his friend then went on to say that his granddaughter was severely autistic -- that she wouldn't look him in the eye, would not recognize that he was there, no kisses, no hugs, etc . . . most of the "basics" of autism, and then some. He said that the doctors put her on a Gluten-Free diet (lifestyle), and within 3 weeks, she was coming up to him, giving him kisses and hugs, and trying to talk with him. He said not to get him wrong -- she still has autism -- but he was amazed at the difference the gluten-free diet made. He told my dad that I was the only other person he had heard about with anti-gliadin antibodies causing neurological difficulties, and he told him to MAKE SURE I remain gluten-free! If my family wasn't sold before (they were and are highly supportive), they SURE are now!

Just wanted to share a gluten-free success story . . . Good luck to all the moms out there struggling with this -- raising kids is hard enough without the struggles of trying to keep them gluten-free -- especially these days!

Share this post


Link to post
Share on other sites

It's fascinating, isn't it???? I read a book called "Unraveling the Mysteries of Autism" by Karen Sourissi (sp?), which details her journey through her son's dx of autism, to her discovery of the gluten-free/CF diet, and his recovery.

I wish more people could realize the brain damage that gluten can do. My daughter's brain definately took a hit, not only in that she is dev. delayed by more than a year, but it seems like she really has a hard time processing things. She forgets things she has already learned, and when she has a gluten accident, her speech takes a major setback. These past two weeks (post accident) her speech is very jumbled. I can handle the physical aspects of the disease, but the neurological impacts are frightening. I find myself getting very angry over the lack of knowledge about celiac/GS in general, but especially the damaging effects it can have on a developing brain. It does more than cause a delay like I keep reading about......it can do serious damage. Doctors NEED to know about this....I wonder how many kids are out there with "unexplained dev. delay" who could benefit from the diet.

At least with the help of the autism community, the gluten free diet is getting more recognition, and more gluten-free products are coming on the market. One day, it won't be such a foreign concept....and more doctors will have to accept that it does work.

Share this post


Link to post
Share on other sites
It's fascinating, isn't it????  I read a book called "Unraveling the Mysteries of Autism" by Karen Sourissi (sp?), which details her journey through her son's dx of autism, to her discovery of the gluten-free/CF diet, and his recovery.

I wish more people could realize the brain damage that gluten can do.  My daughter's brain definately took a hit, not only in that she is dev. delayed by more than a year, but it seems like she really has a hard time processing things.  She forgets things she has already learned, and when she has a gluten accident, her speech takes a major setback.  These past two weeks (post accident) her speech is very jumbled.  I can handle the physical aspects of the disease, but the neurological impacts are frightening.  I find myself getting very angry over the lack of knowledge about celiac/GS in general, but especially the damaging effects it can have on a developing brain.  It does more than cause a delay like I keep reading about......it can do serious damage.  Doctors NEED to know about this....I wonder how many kids are out there with "unexplained dev. delay" who could benefit from the diet. 

At least with the help of the autism community, the gluten free diet is getting more recognition, and more gluten-free products are coming on the market.  One day, it won't be such a foreign concept....and more doctors will have to accept that it does work.

<{POST_SNAPBACK}>

Your kid sounds just like mine! Same symptoms of glutening. If he just had the gastro events with gluten, drs would not give me that "hairy eye" stare when we get talking about my son. It drives me nuts how people... drs... don't know the full spectrum of disorders that go along with celiac disease. Even my son's new teacher sends vibes that I think my son is "special"... She's got an attitude that suggests I'm using celiac disease to compensate for his speech, motor and cognitive delays. Unloading... :P Thanks.

Share this post


Link to post
Share on other sites
I wish more people could realize the brain damage that gluten can do.  My daughter's brain definately took a hit, not only in that she is dev. delayed by more than a year, but it seems like she really has a hard time processing things.  She forgets things she has already learned, and when she has a gluten accident, her speech takes a major setback.  These past two weeks (post accident) her speech is very jumbled.

Okay now your scaring me! My son USED to talk great, full sentences at 10 or 11 months, but has not spoken a correct word since then. We put him on a gluten-free diet around August of this year, and just now he starting to make sounds that might be words. He turned 2 in August so thats around a year since he could speak. He has 2 specail tutors a week working with him on it. He way ahead in so many other areas that I never considered it be much more then he was just slow to talk. After I was! I did not talk till 2 1/2.

We have taught him some Sign Lang... and he does well with that, but at times he struggles with it. I never looked for a connection to a gluten accident and that struggling. I will have to watch for that.

Share this post


Link to post
Share on other sites

I think it's amazing (and scary) what Gluten can do. My husband has a neice and nephew (both from the same parents) who are autistic. I called my sister-in-law last night (it's her daughter's children) to tell her of this -- they live out of town -- informed her husband of my dad's conversation -- and haven't gotten a call back yet.

My sister-in-law is a nurse, and because the MD's at Hopkins said that they can find no cause for my cerebellar degeneration & myopathy, and it is "a physical response to an intense emotional stress", she won't believe that my condition is gluten-related. Therefore, she's not listening to ANY information with regard to gluten now. What a shame.

Her grandson is the most profoundly affected -- completely non-verbal, and almost non-communicative with regard to his needs. Her granddaughter is less profoundly affected -- she says a few words -- but is 4 years old and is still unable potty train.

Bless you all -- as a mother, I can't imagine the struggles you're enduring with this. I know the pain I felt with much more mild difficulties, and I hope that the gluten-free diet helps your children immensely. Good luck to you all.

Share this post


Link to post
Share on other sites
Okay now your scaring me! My son USED to talk great, full sentences at 10 or 11 months, but has not spoken a correct word since then. We put him on a gluten-free diet around August of this year, and just now he starting to make sounds that might be words. He turned 2 in August so thats around a year since he could speak. He has 2 specail tutors a week working with him on it. He way ahead in so many other areas that I never considered it be much more then he was just slow to talk. After I was! I did not talk till 2 1/2.

We have taught him some Sign Lang... and he does well with that, but at times he struggles with it. I never looked for a connection to a gluten accident and that struggling. I will have to watch for that.

<{POST_SNAPBACK}>

Vincent- that's a little unnerving. Have you had him evaluated for autism? Do you feel it may be necessary? My son is not autistic, but I was really afraid he was..at leat mildly. 4days gluten free is when he strung his first words together for coherent sentences. But the lack of speaking, the lack of mental clarity contributed to his speech delays and ability to concentrate and recall information. It's all correctable, but a lot of work. The sooner memory issues, speech issues are dxed, the sooner a specialist can begin working with the kid and giving the parent advice on what to do at home to assist in strengthening these OH so necessary school skills. Also, my kid has piss-poor motor skills. Can't jump to save his life! I insisted the school have him repeat kinder and he's now doing the first grade. He's bright as all get out- reads like a fiend- chapter books... you know, really bright... but can't remember his letters. He writes and asks me questions like, "How do you make an "E"?.. But he can read. So it's weird. And he's really great with math, but he can't remember how to write his numbers. Does them backwards all the time. And can't recall what he read without prompts.

Share this post


Link to post
Share on other sites
Vincent- that's a little unnerving.  Have you had him evaluated for autism?  Do you feel it may be necessary?  My son is not autistic, but I was really afraid he was..at leat mildly.  4days gluten free is when he strung his first words together for coherent sentences.  But the lack of speaking, the lack of mental clarity contributed to his speech delays and ability to concentrate and recall information.  It's all correctable, but a lot of work.  The sooner memory issues, speech issues are dxed, the sooner a specialist can begin working with the kid and giving the parent advice on what to do at home to assist in strengthening these OH so necessary school skills.  Also, my kid has piss-poor motor skills.  Can't jump to save his life!  I insisted the school have him repeat kinder and he's now doing the first grade.  He's bright as all get out- reads like a fiend- chapter books...  you know, really bright... but can't remember his letters.  He writes and asks me questions like, "How do you make an "E"?..  But he can read.  So it's weird.  And he's really great with math, but he can't remember how to write his numbers.  Does them backwards all the time.  And can't recall what he read without prompts.

<{POST_SNAPBACK}>

He has been seeing a speach therapist weeklly for a while now and recently added a second one. On Friday we are actually meeting to review his progress (lack of) and I had planed to ask for a hearing test. He is SOOOOOO far ahead in some areas though, out testing 3 years some times. Speach is the only area that he is behind in.

Share this post


Link to post
Share on other sites
He has been seeing a speach therapist weeklly for a while now and recently added a second one. On Friday we are actually meeting to review his progress (lack of) and I had planed to ask for a hearing test. He is SOOOOOO far ahead in some areas though, out testing 3 years some times. Speach is the only area that he is behind in.

<{POST_SNAPBACK}>

Has he had any ear infections? My DD lost all speach at about the same age because the infections went away but the fluid didn't. This we found was also gluten related, after being gluten-free she hasn't had any problems with her ears but for many years before that things were a struggle. They have probably looked for this already but I wanted to make sure. .

Share this post


Link to post
Share on other sites
Has he had any ear infections? My DD lost all speach at about the same age because the infections went away but the fluid didn't. This we found was also gluten related, after being gluten-free she hasn't had any problems with her ears but for many years before that things were a struggle. They have probably looked for this already but I wanted to make sure. .

<{POST_SNAPBACK}>

Nope none yet.

Share this post


Link to post
Share on other sites

I think it is so sad when parents of autistic kids won't at least give the diet a chance. I know it's not a cure all, but it has helped so many families. And I don't think they realize how easy it can be once you really get the hang of it.

Jnkmnky, it makes me feel so much better to hear that your little boy is doing okay now. I worry about Emmie all the time, and wonder what her future is going to be like. Dh is worried that she is going to be labeled as "mentally challenged", but I really don't think that's it. I know she has a global delay right now, but her daily life skills are right up to par, and she's still so young. I think all of this is due to gluten, and once it clears her system completely, she'll start making progress (with lots of help I'm sure).

If I ever had doubts about the brain damage gluten can do, I definately don't after this past accident. I can hardly understand a word she says, and she forgot the names of her little farm animals. She couldn't remember the word cow or pig......I know it's a small thing, but that's usually something kids don't just forget all of the sudden. Her ped looked at me like I had two heads when I mentioned her regression after a gluten accident last time. I'm getting quite used to that look really.

There doesn't seem to be much in the way of literature to read about celiac kids and neurological dysfunction. I find "delay" pretty common, but gluten can cause much more than just a delay based on our experiences.

Anyway, I'm rambling. Thanks for making me feel better, I really needed that right now!

Share this post


Link to post
Share on other sites
Okay now your scaring me! My son USED to talk great, full sentences at 10 or 11 months, but has not spoken a correct word since then. We put him on a gluten-free diet around August of this year, and just now he starting to make sounds that might be words. He turned 2 in August so thats around a year since he could speak. He has 2 specail tutors a week working with him on it. He way ahead in so many other areas that I never considered it be much more then he was just slow to talk. After I was! I did not talk till 2 1/2.

We have taught him some Sign Lang... and he does well with that, but at times he struggles with it. I never looked for a connection to a gluten accident and that struggling. I will have to watch for that.

<{POST_SNAPBACK}>

Hi,

did you try a gluten free ,diary free diet?

Share this post


Link to post
Share on other sites
Hi,

did you try a gluten free ,diary free diet?

<{POST_SNAPBACK}>

He on gluten-free now, but he has no issues with dairy. He is aas gluten-free as you can get a teething toddler to be.

Share this post


Link to post
Share on other sites
I think it is so sad when parents of autistic kids won't at least give the diet a chance.  I know it's not a cure all, but it has helped so many families.  And I don't think they realize how easy it can be once you really get the hang of it.

Jnkmnky, it makes me feel so much better to hear that your little boy is doing okay now.  I worry about Emmie all the time, and wonder what her future is going to be like.  Dh is worried that she is going to be labeled as "mentally challenged", but I really don't think that's it.  I know she has a global delay right now, but her daily life skills are right up to par, and she's still so young.  I think all of this is due to gluten, and once it clears her system completely, she'll start making progress (with lots of help I'm sure).

If I ever had doubts about the brain damage gluten can do, I definately don't after this past accident.  I can hardly understand a word she says, and she forgot the names of her little farm animals.  She couldn't remember the word cow or pig......I know it's a small thing, but that's usually something kids don't just forget all of the sudden.  Her ped looked at me like I had two heads when I mentioned her regression after a gluten accident last time.  I'm getting quite used to that look really.

There doesn't seem to be much in the way of literature to read about celiac kids and neurological dysfunction.  I find "delay" pretty common, but gluten can cause much more than just a delay based on our experiences.

Anyway, I'm rambling.  Thanks for making me feel better, I really needed that right now!

<{POST_SNAPBACK}>

Yeah, and when the child has a head filled with a numbed buzzing sound for the first three years of life, it's amazing what "delays" will manifest! My son is very smart, but he existed in a hazy fog of a world from birth to three years of age. He's going to be a little different as a result. He has a wicked imagination and interprets events in unique ways. It's not bad, ultimately, but difficult in an institutional setting like public school to grade. His teacher just told me he's top in the class, but that he APPEARS to be not paying attention most of the time. I think she gets that he was in La-la land for the first three years and that he's comfortable still being there! :lol: But he DOES pay attention. My oldest kid is in the "gifted" program at our school, and my daughter is brighter than he is. She'll be tested this year. Now, I don't know where my youngest will end up, but from all sources, he's doing fantastically well this year. I think holding him back was the best thing I did for him. I would recommend it to anyone who has a child who is struggling. Especially a celiac kid who had the peptides clouding up their brain.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • April 17, 2019 Until April 27, 2019
      0  
      April 17-27, 2020   For the past few years many of you have asked us to arrange a River Boat Cruise that will allow us to visit Amsterdam's famous Keukenhof Gardens at its prime time of the blossoming of the millions of Tulips and Hyacinths - alongside the windmills of the Netherlands.  With the participation of a minimum of 20 persons we have arranged an All-Inclusive Cruise from Antwerp to Amsterdam.  This cruise will not be offered to the public until January, 2019 and always sells out quickly.   THERE WILL BE NO MONEY REQUIRED NOR COMMITMENT FROM YOU until we have all the final costs and details.  If you are at all interested check out our website for as many of the details that we have as of this time.   We need your request to be placed on a list of interested participants so we can present that number to Uniworld to show we have the sincere interest in this All-Inclusive Bob & Ruth's Gluten-free Cruise.   PLEASE CHECK OUT OUR WEBSITE FOR THE DETAILED INFORMATION THAT WE HAVE AS OF THIS TIME.   http://bobandruths.com
    • April 24, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • May 04, 2019 Until May 05, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
×
×
  • Create New...