Help - Non autistic child hearing voices upon gluten withdrawal

[Guest guest]

Hi all,

 

Please note this child is not autistic.  I'm turning to the autism community for

help because you all are more familiar with gluten /casein withdrawals.

 

I received this cry for help from a mom who found my website 

www.theglutensyndrome.net .  Any comments, or referrals to help this

child?  Please pray for her.   

 

 

********************

 

I've been trying to find out what is causing my 8 year old's chronic

diarrhea which has become worse in the last few months. I took her off

gluten as an experiment 2 weeks ago and in the first week she had minor

improvements, not 100%, but enough that I wanted to have her tested. So

after two weeks off gluten she came back with negative blood test results.

Our doctor wanted us to keep her off gluten and take out lactose until she

could see a specialist (which will be in two weeks). About a week ago she

started to complain of a negative voice in her head that seemed to be around

all of the time and was bothering her and wanted to know if it was normal. I

told her it was and it should pass. It never passed, she talked about it all

day every day. She began crying over it frequently, seeming to be tormented

by it and the things it was saying. She would walk around with red eyes,

following me to tell me what it was telling her. Two days ago she became

completely inconsolable, sobbing, knashing her teeth, clenching her fists,

tearing apart tissues for hours. She refused to watch tv or listen to books

on tape, her two favorite things to do, because they " made it worse. " I

looked up gluten withdrawal on the web and found some a cases of toddlers

having severe tantrums, or heroin-like withdrawal after being gluten free.

We called her doctor and she suggested giving her gluten. This was

yesterday. I gave her 4 girl scout cookies and within an hour we went for a

walk and she was laughing, smiling, climbing trees. By dinnertime she was

regressing back to the voice and the whimpering, but not at the level of the

day before. We gave her whole wheat pasta for dinner and she was quiet for

an hour after dinner. She went to bed a little whimpery but not hysterical.

This morning she had fruit for breakfast and was slightly bothered by the

voice but said it was " repeating the same old stuff " and was saying, " um, "

like it couldn't think of anything new. She still wanted it to go away but

wasn't crying as in days before.

I hope this information helps you and others. Our doctor had never heard of

this before but trusted our observations. We still have to wait two weeks to

see the specialist, but hopefully having her back on gluten will help with a

diagnosis. I'm so frightened this experience that I want to say good-bye to

gluten for good but I dread the next time we take her off it which will be

gradual, for sure.

If you have any advice for us we would greatly appreciate it.

Update Tues March 10

 

Since going back on gluten on Thursday our daughter's emotional symptoms have

improved but not cleared completely, diarrhea continues. She had a rough

night emotionally Saturday, begging me to make the negative thoughts stop.

Sunday she was great all day mentally, bouncing off the walls with joy, it

seemed. That night we took her to a concert at her music school and she

wanted to hide in the bathroom for the whole concert because it felt better

in there, the noise was too much. This is not typical for her. Yesterday she

wasn't crying or hysterical but complained about her " ego " constantly saying

it was killing her so I made an apt. with her pediatrician. My husband and I

went with her and I gave her the whole story, complete with a history of

symptoms I had printed and a copy of the home page of your website. She

decided she definitely needed help and after a few calls decided to send

us to Children's Hospital in Boston, Emergency Room. She thought this was

the only way we could get help in a hurry and they might have every type of

specialist there to help her.

We were there from 6 pm until 2 am so we didn't get home and to sleep until

3 am. She never saw a GI specialist, just the attending and a psych person

(not a doctor). I brought more copies of my notes which only the psych

person read and I told them all about our theory of gluten withdrawal. No

one had heard of it and it appeared that was the end of that. They took

blood and checked her thyroid, blood count and electrolytes - all normal.

They did an EKG and gave her a psych exam at 1:30 in the morning, plus an

interview with me. Their conclusion was that she needed to attend an

intensive two week psych program with other troubled kids. We said we'd

sleep on it.

There's no way we're sending her to the program they have in mind for many

reasons but our biggest concern is that no one is looking into the gluten

withdrawal. " Never heard of it " is their mantra. She's even better mentally

today as we've continued the gluten but her diarrhea is getting worse. We

still may seek out a psychiatrist to help her through this but we're looking

for one who is holistic, who may consider her GI issues as related to the

stuff going on in her brain.

I guess you had told me we probably wouldn't find any documentation of

gluten withdrawal. I just thought someone would be curious enough to look

into it. I haven't heard from anyone you've contacted. Not giving up, just

continuing on our journey to health for her!

 

************************************************

 

In another email Mom mentioned that a friend in the mental health field was

going to come over with her  daughters to help her find a local psychiatrist. 

But the child didn't want them to come, although later the friend did come with

only one of the daughters.

 

There is serious schizophrenia in the extended family.

Mrs. Olive Kaiser

www.TheGlutenSyndrome.net

also named

www.GlutenSensitivity.net

and

www.GlutenReactivity.net

630-628-9126

630-628-9127 fax and voice line

630-808-2079 (cell)

Disclaimer --- I am a volunteer and not a medical expert, but I can

share with you information that I have found helpful. Please contact

a well informed medical professional for medical advice regarding your

situation.

Please verify the gluten free status of products often for your own protection.

For God so loved the world that He gave His only begotten Son, that whosoever

believes on Him should not perish, but have everlasting life. 3:16

[Guest guest]

>>About a week ago she

> started to complain of a negative voice in her head that seemed to be around

> all of the time and was bothering her and wanted to know if it was normal.

For my oldest son, this was caused by B vitamin deficiency, especially B6 and

B12. Try giving a multi B vitamin, like B50, see if that helps.

Yeast overgrowth can also cause this.

http://www.danasview.net/yeast.htm

> We called her doctor and she suggested giving her gluten. This was

> yesterday. I gave her 4 girl scout cookies and within an hour we went for a

> walk and she was laughing, smiling, climbing trees.

This may be because of the gluten, or because the yeast was fed [sugar from the

cookies] and therefore the die off symptoms were reduced.

Wheat is a high source of B vitamins, so removing wheat will remove the prime

source of B vitamains. Try B50 plus a probiotic for yeast, see if that helps.

Dana

[Guest guest]

Hi,

 

I seem to remember something about this also (auditory hallucinations) being

possibly a sign of manganese (not the same as magnesium) deficiency, as one of

our chief sources of manganese is wheat and its relatives. I don't have my files

with me, so can't remember exactly. Can someone else comment on this? I did an

online search (thought it was in Dr. Reichelt's work), but can't find it now.

 

From: danasview <danasview@...>

Subject: Re: Help - Non autistic child hearing voices upon gluten

withdrawal

Date: Saturday, April 17, 2010, 11:25 AM

>>About a week ago she

> started to complain of a negative voice in her head that seemed to be around

> all of the time and was bothering her and wanted to know if it was normal.

For my oldest son, this was caused by B vitamin deficiency, especially B6 and

B12.  Try giving a multi B vitamin, like B50, see if that helps.

Yeast overgrowth can also cause this.

http://www.danasview.net/yeast.htm

> We called her doctor and she suggested giving her gluten. This was

> yesterday. I gave her 4 girl scout cookies and within an hour we went for a

> walk and she was laughing, smiling, climbing trees.

This may be because of the gluten, or because the yeast was fed [sugar from the

cookies] and therefore the die off symptoms were reduced.

Wheat is a high source of B vitamins, so removing wheat will remove the prime

source of B vitamains.  Try B50 plus a probiotic for yeast, see if that helps.

Dana

------------------------------------

[Guest guest]

I wonder if shes been tested for celiacs.

http://www.drkaslow.com/html/gluten-brain_connection_.html

> >>About a week ago she

> > started to complain of a negative voice in her head that seemed to be around

> > all of the time and was bothering her and wanted to know if it was normal.

>

>

> For my oldest son, this was caused by B vitamin deficiency, especially B6 and

B12.  Try giving a multi B vitamin, like B50, see if that helps.

>

> Yeast overgrowth can also cause this.

>

> http://www.danasview.net/yeast.htm

>

>

> > We called her doctor and she suggested giving her gluten. This was

> > yesterday. I gave her 4 girl scout cookies and within an hour we went for a

> > walk and she was laughing, smiling, climbing trees.

>

>

> This may be because of the gluten, or because the yeast was fed [sugar from

the cookies] and therefore the die off symptoms were reduced.

>

> Wheat is a high source of B vitamins, so removing wheat will remove the prime

source of B vitamains.  Try B50 plus a probiotic for yeast, see if that helps.

>

> Dana

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Try D3, a Swedish study showed autistics and schizophrenics were low in

blood plasma D3 and both responded to supplementation.

I've also seen inositol recommended

Sally

Brattin wrote:

> Hi,

>

> I seem to remember something about this also (auditory hallucinations) being

possibly a sign of manganese (not the same as magnesium) deficiency, as one of

our chief sources of manganese is wheat and its relatives. I don't have my files

with me, so can't remember exactly. Can someone else comment on this? I did an

online search (thought it was in Dr. Reichelt's work), but can't find it now.

>

>

>

>

>

>

> From: danasview <danasview@...>

> Subject: Re: Help - Non autistic child hearing voices upon gluten

withdrawal

>

> Date: Saturday, April 17, 2010, 11:25 AM

>

>

>

>

>>> About a week ago she

>>>

>> started to complain of a negative voice in her head that seemed to be around

>> all of the time and was bothering her and wanted to know if it was normal.

>>

>

>

> For my oldest son, this was caused by B vitamin deficiency, especially B6 and

B12. Try giving a multi B vitamin, like B50, see if that helps.

>

> Yeast overgrowth can also cause this.

>

> http://www.danasview.net/yeast.htm

>

>

>

>> We called her doctor and she suggested giving her gluten. This was

>> yesterday. I gave her 4 girl scout cookies and within an hour we went for a

>> walk and she was laughing, smiling, climbing trees.

>>

>

>

> This may be because of the gluten, or because the yeast was fed [sugar from

the cookies] and therefore the die off symptoms were reduced.

>

> Wheat is a high source of B vitamins, so removing wheat will remove the prime

source of B vitamains. Try B50 plus a probiotic for yeast, see if that helps.

>

> Dana

>

>

>

>

> ------------------------------------

>

>