Reaction to sedation and blood test results

[Guest guest]

Hello all,

We recently took our 2 year old(26 lb) son to Chapel Hill, NC for

an MRI and ABR (hearing related) procedures. Since they had to

sedate him for those tests, I used the opportunity to order the

blood tests recommended by .

I wanted to report a few things and ask if anyone has seen similar

results. As a side note, Mason is on 2 proEfa, 1 EPA and 2 200 IU

Vitamin E alpha-d-tocophorol. He may not have gotten all of his

supplements on Thursday and Friday. His sedation was on Friday).

First Issue:

He received Versed and Nebutal for sedation and was sedated for

about 2.5 hours - the longest sedation time in his life. The nurse

told me that the medicine should have been out of his system within

2-4 hours after he woke up. When he awoke, he was very cranky and

floppy. It was very hard to hold or console him. We went to the

car and he was extremely upset and thirsty. He drank about 14 oz of

apple juice and then slept in the car for about 6 hours more on the

ride to family's house. We went to his cousin's soccer game that

night (10 hours after the sedation and he was extremely clumsy and

drunk looking in his eyes). Saturday morning, we were rushing to

get out of the house and didn't notice odd behavior; however, when

we got to the mall (at about 9am) and he started walking around the

kids play zone, but he couldn't walk. Every 3rd step he would

fall. At first, we thought his diaper or pants might be bothering

him. So, we took his pants, shoes and socks off and checked his

diaper. He still couldn't walk and his legs (especially the right

leg was very shaky). Well, we started to get very concerned and

tried to page the nurses on call - to no avail. So, we left and

rushed back home to Atlanta. We arrived home at 6pm and got him out

of the car seat and he still couldn't walk steadily (now 22 hours

after the sedation.) We called his pediatrician and he suggested we

take him down to the children's hospital for another MRI to see what

might be going on. I didn't want him to get sedated any more. So,

we waited for about an hour and a half to see how he improved and he

did get back up to about 90% of his previous coordination level. He

is fine now, but it took several days before he was himself again

and steady.

The doctors all say the Versed and Nebutal should not have caused

those reactions. But, no other variables changed other than being

in a strange place and not getting his supplements fully for two

days. Has anyone ever heard of anything like this?

NEXT, His blood test results show the following issues:

-Anion Gap is low (8) | normal is 9-15

-He had virutally no (<1) CARNOSINE | What is normal?

-His CYSTINE was low (16) | normal is 18-82

-LYSINE was low (92) | normal is 110-290

-GLIADIN AB,IGG was very high (36.8) | normal range is <= 20

-His vitamin E seemed on the high end of normal (16.1) | normal is

5.5-17

-It seems like something may have gotten messed up in the orders of

the fatty acids and CBC. So, I don't have those results.

I read that a low anion gap is relatively rare but may occur from

the presence of abnormal positively charged proteins, as in multiple

myeloma (SCARY), or in the setting of a low albumin level. THen I

read that albumins are crucial for transporting fatty acids. I did

not see a nubmer on Albumin though for the blood tests. Is this

something that would have been in the fatty acid results?

Also, does anyone know why the GLIADIN AB, IGG would be so high?

Any thoughts are appreciated.

Thanks,

Christy

[Guest guest]

I am so sorry to hear about your son's reaction to the sedation/anesthesia.

That must

have been extremely scary. I just want to comment on one of the blood tests,

you asked:

>Also, does anyone know why the GLIADIN AB, IGG would be so high?

Three possible reasons: gluten-sensitive enteropathy, celiac disease, and IgA

deficiency--

and for any of these I would get all the gluten out of his diet immediately. He

should also

be tested for total IgA and for other serological tests namely anti-tissue

transglutaminase

IgA, and anti-gliadin IgA. I wouldn't consent to a small bowel biopsy though

until you find

out what happened to him with the reaction to sedation.

It's possible that they are withholding the results of the fatty acid testing to

do them over

because they may not have come out as normal as expected, or else the doctor

doesn't

want you to know that your child may have a metabolic fatty acid disorder

because of

liability risks and so they " lost " them. (I guess I sound cynical, but I have

seen things like

this happen, and I mean I have WITNESSED the doctors doing them.) can

give you

some better advice about the rest of the tests and the reactions (maybe

privately). )

The first thing to do, though, is to get him off the wheat, barley, rye and oats

and any

derivative--look at the celiac sites or the ones for GFCF diets--because if he

is gluten-

sensitive he will not be absorbing fats properly or oil soluble vitamins like A,

D, E and K.

Lack of vitamin K can cause a hemorrhage. We've been talking about E a lot on

this list.

Lack of A compromises the immunity of the mucus membranes. It won't hurt for

vitamin E

to be high normal.

OK, I don't want to scare you, but do look into gluten-free diets immediately

and make

sure those fatty acid tests are REPEATED, soon, if they lost them. I know it's

hard to make

a child go through another blood draw, but it may be extremely important.

Also, you must document this all immediately, get copies of his medical records

before

they get lost too, and make sure that if he has to have anesthesia again, the

doctors all

have those records and your description of what happened BEFORE the procedure.

Peace,

Kathy E.

'

> NEXT, His blood test results show the following issues:

> -Anion Gap is low (8) | normal is 9-15

> -He had virutally no (<1) CARNOSINE | What is normal?

> -His CYSTINE was low (16) | normal is 18-82

> -LYSINE was low (92) | normal is 110-290

> -GLIADIN AB,IGG was very high (36.8) | normal range is <= 20

>

> -His vitamin E seemed on the high end of normal (16.1) | normal is

> 5.5-17

> -It seems like something may have gotten messed up in the orders of

> the fatty acids and CBC. So, I don't have those results.

>

> I read that a low anion gap is relatively rare but may occur from

> the presence of abnormal positively charged proteins, as in multiple

> myeloma (SCARY), or in the setting of a low albumin level. THen I

> read that albumins are crucial for transporting fatty acids. I did

> not see a nubmer on Albumin though for the blood tests. Is this

> something that would have been in the fatty acid results?

>

> Also, does anyone know why the GLIADIN AB, IGG would be so high?

>

> Any thoughts are appreciated.

> Thanks,

> Christy

>

[Guest guest]

I am so sorry to hear about your son's reaction to the sedation/anesthesia.

That must

have been extremely scary. I just want to comment on one of the blood tests,

you asked:

>Also, does anyone know why the GLIADIN AB, IGG would be so high?

Three possible reasons: gluten-sensitive enteropathy, celiac disease, and IgA

deficiency--

and for any of these I would get all the gluten out of his diet immediately. He

should also

be tested for total IgA and for other serological tests namely anti-tissue

transglutaminase

IgA, and anti-gliadin IgA. I wouldn't consent to a small bowel biopsy though

until you find

out what happened to him with the reaction to sedation.

It's possible that they are withholding the results of the fatty acid testing to

do them over

because they may not have come out as normal as expected, or else the doctor

doesn't

want you to know that your child may have a metabolic fatty acid disorder

because of

liability risks and so they " lost " them. (I guess I sound cynical, but I have

seen things like

this happen, and I mean I have WITNESSED the doctors doing them.) can

give you

some better advice about the rest of the tests and the reactions (maybe

privately). )

The first thing to do, though, is to get him off the wheat, barley, rye and oats

and any

derivative--look at the celiac sites or the ones for GFCF diets--because if he

is gluten-

sensitive he will not be absorbing fats properly or oil soluble vitamins like A,

D, E and K.

Lack of vitamin K can cause a hemorrhage. We've been talking about E a lot on

this list.

Lack of A compromises the immunity of the mucus membranes. It won't hurt for

vitamin E

to be high normal.

OK, I don't want to scare you, but do look into gluten-free diets immediately

and make

sure those fatty acid tests are REPEATED, soon, if they lost them. I know it's

hard to make

a child go through another blood draw, but it may be extremely important.

Also, you must document this all immediately, get copies of his medical records

before

they get lost too, and make sure that if he has to have anesthesia again, the

doctors all

have those records and your description of what happened BEFORE the procedure.

Peace,

Kathy E.

'

> NEXT, His blood test results show the following issues:

> -Anion Gap is low (8) | normal is 9-15

> -He had virutally no (<1) CARNOSINE | What is normal?

> -His CYSTINE was low (16) | normal is 18-82

> -LYSINE was low (92) | normal is 110-290

> -GLIADIN AB,IGG was very high (36.8) | normal range is <= 20

>

> -His vitamin E seemed on the high end of normal (16.1) | normal is

> 5.5-17

> -It seems like something may have gotten messed up in the orders of

> the fatty acids and CBC. So, I don't have those results.

>

> I read that a low anion gap is relatively rare but may occur from

> the presence of abnormal positively charged proteins, as in multiple

> myeloma (SCARY), or in the setting of a low albumin level. THen I

> read that albumins are crucial for transporting fatty acids. I did

> not see a nubmer on Albumin though for the blood tests. Is this

> something that would have been in the fatty acid results?

>

> Also, does anyone know why the GLIADIN AB, IGG would be so high?

>

> Any thoughts are appreciated.

> Thanks,

> Christy

>

[Guest guest]

" or else the doctor doesn't want you to know that your child may

have a metabolic fatty acid disorder because of liability risks and

so they " lost " them. "

Hi Kathy. Why would they do this? Why would there be liability

risks to telling a parent the results of their child's tests? Is it

because the doctor didn't think to order them in the first place?

Thanks.

>

> I am so sorry to hear about your son's reaction to the

sedation/anesthesia. That must

> have been extremely scary. I just want to comment on one of the

blood tests, you asked:

> >Also, does anyone know why the GLIADIN AB, IGG would be so high?

>

> Three possible reasons: gluten-sensitive enteropathy, celiac

disease, and IgA deficiency--

> and for any of these I would get all the gluten out of his diet

immediately. He should also

> be tested for total IgA and for other serological tests namely

anti-tissue transglutaminase

> IgA, and anti-gliadin IgA. I wouldn't consent to a small bowel

biopsy though until you find

> out what happened to him with the reaction to sedation.

>

> It's possible that they are withholding the results of the fatty

acid testing to do them over

> because they may not have come out as normal as expected, or else

the doctor doesn't

> want you to know that your child may have a metabolic fatty acid

disorder because of

> liability risks and so they " lost " them. (I guess I sound cynical,

but I have seen things like

> this happen, and I mean I have WITNESSED the doctors doing them.)

can give you

> some better advice about the rest of the tests and the reactions

(maybe privately). )

>

> The first thing to do, though, is to get him off the wheat,

barley, rye and oats and any

> derivative--look at the celiac sites or the ones for GFCF diets--

because if he is gluten-

> sensitive he will not be absorbing fats properly or oil soluble

vitamins like A, D, E and K.

> Lack of vitamin K can cause a hemorrhage. We've been talking

about E a lot on this list.

> Lack of A compromises the immunity of the mucus membranes. It

won't hurt for vitamin E

> to be high normal.

>

> OK, I don't want to scare you, but do look into gluten-free diets

immediately and make

> sure those fatty acid tests are REPEATED, soon, if they lost them.

I know it's hard to make

> a child go through another blood draw, but it may be extremely

important.

>

> Also, you must document this all immediately, get copies of his

medical records before

> they get lost too, and make sure that if he has to have anesthesia

again, the doctors all

> have those records and your description of what happened BEFORE

the procedure.

>

> Peace,

> Kathy E.

> '

> > NEXT, His blood test results show the following issues:

> > -Anion Gap is low (8) | normal is 9-15

> > -He had virutally no (<1) CARNOSINE | What is normal?

> > -His CYSTINE was low (16) | normal is 18-82

> > -LYSINE was low (92) | normal is 110-290

> > -GLIADIN AB,IGG was very high (36.8) | normal range is <= 20

> >

> > -His vitamin E seemed on the high end of normal (16.1) | normal

is

> > 5.5-17

> > -It seems like something may have gotten messed up in the orders

of

> > the fatty acids and CBC. So, I don't have those results.

> >

> > I read that a low anion gap is relatively rare but may occur

from

> > the presence of abnormal positively charged proteins, as in

multiple

> > myeloma (SCARY), or in the setting of a low albumin level. THen

I

> > read that albumins are crucial for transporting fatty acids. I

did

> > not see a nubmer on Albumin though for the blood tests. Is this

> > something that would have been in the fatty acid results?

> >

> > Also, does anyone know why the GLIADIN AB, IGG would be so high?

> >

> > Any thoughts are appreciated.

> > Thanks,

> > Christy

> >

>

[Guest guest]

I wouldn't worry about a low anion gap. More concerning is a HIGH

gap without a good explanation. The gap in this case doesn't mean

much.

I am hearing of many apraxia and PDD children with a high anti-

gliadin antibody. Was the rest of the celiac panel positive? Does

your child have food allergies/gut issues? This may be celiac

disease, however it may also be something totally independent of

celiac...some neurological condition associated with antigliadin

antibodies. Either way, Kathy is right, and your child will likely

benefit from gluten/dairy free diet. But you will want to discuss a

celiac work-up with your pediatrician, as you might want to have a

gut biopsy to diagnose celiac disease (the gold standard for

diagnosis). If diagnosed with celiac disease...this means a life-

long avoidance of gluten. No way around it. If the biopsy is

negative, it doesn't rule out the possibility that your child has a

neurological condition associated with gluten sensitivity.

I'm not so concerned about the amino acid panel. There are certain

patterns associated with metabolic disorders, but otherwise there

are variations with diet etc that don't mean much by themselves.

Did you get carnitine and acylcarnitine levels done?

-claudia

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

> I am so sorry to hear about your son's reaction to the

sedation/anesthesia. That must

> have been extremely scary. I just want to comment on one of the

blood tests, you asked:

> >Also, does anyone know why the GLIADIN AB, IGG would be so high?

>

> Three possible reasons: gluten-sensitive enteropathy, celiac

disease, and IgA deficiency--

> and for any of these I would get all the gluten out of his diet

immediately. He should also

> be tested for total IgA and for other serological tests namely

anti-tissue transglutaminase

> IgA, and anti-gliadin IgA. I wouldn't consent to a small bowel

biopsy though until you find

> out what happened to him with the reaction to sedation.

>

> It's possible that they are withholding the results of the fatty

acid testing to do them over

> because they may not have come out as normal as expected, or else

the doctor doesn't

> want you to know that your child may have a metabolic fatty acid

disorder because of

> liability risks and so they " lost " them. (I guess I sound cynical,

but I have seen things like

> this happen, and I mean I have WITNESSED the doctors doing them.)

can give you

> some better advice about the rest of the tests and the reactions

(maybe privately). )

>

> The first thing to do, though, is to get him off the wheat,

barley, rye and oats and any

> derivative--look at the celiac sites or the ones for GFCF diets--

because if he is gluten-

> sensitive he will not be absorbing fats properly or oil soluble

vitamins like A, D, E and K.

> Lack of vitamin K can cause a hemorrhage. We've been talking

about E a lot on this list.

> Lack of A compromises the immunity of the mucus membranes. It

won't hurt for vitamin E

> to be high normal.

>

> OK, I don't want to scare you, but do look into gluten-free diets

immediately and make

> sure those fatty acid tests are REPEATED, soon, if they lost them.

I know it's hard to make

> a child go through another blood draw, but it may be extremely

important.

>

> Also, you must document this all immediately, get copies of his

medical records before

> they get lost too, and make sure that if he has to have anesthesia

again, the doctors all

> have those records and your description of what happened BEFORE

the procedure.

>

> Peace,

> Kathy E.

> '

> > NEXT, His blood test results show the following issues:

> > -Anion Gap is low (8) | normal is 9-15

> > -He had virutally no (<1) CARNOSINE | What is normal?

> > -His CYSTINE was low (16) | normal is 18-82

> > -LYSINE was low (92) | normal is 110-290

> > -GLIADIN AB,IGG was very high (36.8) | normal range is <= 20

> >

> > -His vitamin E seemed on the high end of normal (16.1) | normal

is

> > 5.5-17

> > -It seems like something may have gotten messed up in the orders

of

> > the fatty acids and CBC. So, I don't have those results.

> >

> > I read that a low anion gap is relatively rare but may occur

from

> > the presence of abnormal positively charged proteins, as in

multiple

> > myeloma (SCARY), or in the setting of a low albumin level. THen

I

> > read that albumins are crucial for transporting fatty acids. I

did

> > not see a nubmer on Albumin though for the blood tests. Is this

> > something that would have been in the fatty acid results?

> >

> > Also, does anyone know why the GLIADIN AB, IGG would be so high?

> >

> > Any thoughts are appreciated.

> > Thanks,

> > Christy

> >

>

[Guest guest]

" or else the doctor doesn't want you to know that your child may

have a metabolic fatty acid disorder because of liability risks and

so they " lost " them. "

Hi Kathy. Why would they do this? Why would there be liability

risks to telling a parent the results of their child's tests? Is it

because the doctor didn't think to order them in the first place?

Thanks.

>

> I am so sorry to hear about your son's reaction to the

sedation/anesthesia. That must

> have been extremely scary. I just want to comment on one of the

blood tests, you asked:

> >Also, does anyone know why the GLIADIN AB, IGG would be so high?

>

> Three possible reasons: gluten-sensitive enteropathy, celiac

disease, and IgA deficiency--

> and for any of these I would get all the gluten out of his diet

immediately. He should also

> be tested for total IgA and for other serological tests namely

anti-tissue transglutaminase

> IgA, and anti-gliadin IgA. I wouldn't consent to a small bowel

biopsy though until you find

> out what happened to him with the reaction to sedation.

>

> It's possible that they are withholding the results of the fatty

acid testing to do them over

> because they may not have come out as normal as expected, or else

the doctor doesn't

> want you to know that your child may have a metabolic fatty acid

disorder because of

> liability risks and so they " lost " them. (I guess I sound cynical,

but I have seen things like

> this happen, and I mean I have WITNESSED the doctors doing them.)

can give you

> some better advice about the rest of the tests and the reactions

(maybe privately). )

>

> The first thing to do, though, is to get him off the wheat,

barley, rye and oats and any

> derivative--look at the celiac sites or the ones for GFCF diets--

because if he is gluten-

> sensitive he will not be absorbing fats properly or oil soluble

vitamins like A, D, E and K.

> Lack of vitamin K can cause a hemorrhage. We've been talking

about E a lot on this list.

> Lack of A compromises the immunity of the mucus membranes. It

won't hurt for vitamin E

> to be high normal.

>

> OK, I don't want to scare you, but do look into gluten-free diets

immediately and make

> sure those fatty acid tests are REPEATED, soon, if they lost them.

I know it's hard to make

> a child go through another blood draw, but it may be extremely

important.

>

> Also, you must document this all immediately, get copies of his

medical records before

> they get lost too, and make sure that if he has to have anesthesia

again, the doctors all

> have those records and your description of what happened BEFORE

the procedure.

>

> Peace,

> Kathy E.

> '

> > NEXT, His blood test results show the following issues:

> > -Anion Gap is low (8) | normal is 9-15

> > -He had virutally no (<1) CARNOSINE | What is normal?

> > -His CYSTINE was low (16) | normal is 18-82

> > -LYSINE was low (92) | normal is 110-290

> > -GLIADIN AB,IGG was very high (36.8) | normal range is <= 20

> >

> > -His vitamin E seemed on the high end of normal (16.1) | normal

is

> > 5.5-17

> > -It seems like something may have gotten messed up in the orders

of

> > the fatty acids and CBC. So, I don't have those results.

> >

> > I read that a low anion gap is relatively rare but may occur

from

> > the presence of abnormal positively charged proteins, as in

multiple

> > myeloma (SCARY), or in the setting of a low albumin level. THen

I

> > read that albumins are crucial for transporting fatty acids. I

did

> > not see a nubmer on Albumin though for the blood tests. Is this

> > something that would have been in the fatty acid results?

> >

> > Also, does anyone know why the GLIADIN AB, IGG would be so high?

> >

> > Any thoughts are appreciated.

> > Thanks,

> > Christy

> >

>

[Guest guest]

I wouldn't worry about a low anion gap. More concerning is a HIGH

gap without a good explanation. The gap in this case doesn't mean

much.

I am hearing of many apraxia and PDD children with a high anti-

gliadin antibody. Was the rest of the celiac panel positive? Does

your child have food allergies/gut issues? This may be celiac

disease, however it may also be something totally independent of

celiac...some neurological condition associated with antigliadin

antibodies. Either way, Kathy is right, and your child will likely

benefit from gluten/dairy free diet. But you will want to discuss a

celiac work-up with your pediatrician, as you might want to have a

gut biopsy to diagnose celiac disease (the gold standard for

diagnosis). If diagnosed with celiac disease...this means a life-

long avoidance of gluten. No way around it. If the biopsy is

negative, it doesn't rule out the possibility that your child has a

neurological condition associated with gluten sensitivity.

I'm not so concerned about the amino acid panel. There are certain

patterns associated with metabolic disorders, but otherwise there

are variations with diet etc that don't mean much by themselves.

Did you get carnitine and acylcarnitine levels done?

-claudia

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

> I am so sorry to hear about your son's reaction to the

sedation/anesthesia. That must

> have been extremely scary. I just want to comment on one of the

blood tests, you asked:

> >Also, does anyone know why the GLIADIN AB, IGG would be so high?

>

> Three possible reasons: gluten-sensitive enteropathy, celiac

disease, and IgA deficiency--

> and for any of these I would get all the gluten out of his diet

immediately. He should also

> be tested for total IgA and for other serological tests namely

anti-tissue transglutaminase

> IgA, and anti-gliadin IgA. I wouldn't consent to a small bowel

biopsy though until you find

> out what happened to him with the reaction to sedation.

>

> It's possible that they are withholding the results of the fatty

acid testing to do them over

> because they may not have come out as normal as expected, or else

the doctor doesn't

> want you to know that your child may have a metabolic fatty acid

disorder because of

> liability risks and so they " lost " them. (I guess I sound cynical,

but I have seen things like

> this happen, and I mean I have WITNESSED the doctors doing them.)

can give you

> some better advice about the rest of the tests and the reactions

(maybe privately). )

>

> The first thing to do, though, is to get him off the wheat,

barley, rye and oats and any

> derivative--look at the celiac sites or the ones for GFCF diets--

because if he is gluten-

> sensitive he will not be absorbing fats properly or oil soluble

vitamins like A, D, E and K.

> Lack of vitamin K can cause a hemorrhage. We've been talking

about E a lot on this list.

> Lack of A compromises the immunity of the mucus membranes. It

won't hurt for vitamin E

> to be high normal.

>

> OK, I don't want to scare you, but do look into gluten-free diets

immediately and make

> sure those fatty acid tests are REPEATED, soon, if they lost them.

I know it's hard to make

> a child go through another blood draw, but it may be extremely

important.

>

> Also, you must document this all immediately, get copies of his

medical records before

> they get lost too, and make sure that if he has to have anesthesia

again, the doctors all

> have those records and your description of what happened BEFORE

the procedure.

>

> Peace,

> Kathy E.

> '

> > NEXT, His blood test results show the following issues:

> > -Anion Gap is low (8) | normal is 9-15

> > -He had virutally no (<1) CARNOSINE | What is normal?

> > -His CYSTINE was low (16) | normal is 18-82

> > -LYSINE was low (92) | normal is 110-290

> > -GLIADIN AB,IGG was very high (36.8) | normal range is <= 20

> >

> > -His vitamin E seemed on the high end of normal (16.1) | normal

is

> > 5.5-17

> > -It seems like something may have gotten messed up in the orders

of

> > the fatty acids and CBC. So, I don't have those results.

> >

> > I read that a low anion gap is relatively rare but may occur

from

> > the presence of abnormal positively charged proteins, as in

multiple

> > myeloma (SCARY), or in the setting of a low albumin level. THen

I

> > read that albumins are crucial for transporting fatty acids. I

did

> > not see a nubmer on Albumin though for the blood tests. Is this

> > something that would have been in the fatty acid results?

> >

> > Also, does anyone know why the GLIADIN AB, IGG would be so high?

> >

> > Any thoughts are appreciated.

> > Thanks,

> > Christy

> >

>

[Guest guest]

Kathleen,

Thank you so much for your detailed reply. I am sorry I have been

MIA for several days. I have been swamped with my work and my son

and I have been fighting a bad cold and now it appears Mason may

have contracted another UTI. It has been an exhausting week and

weekend!

Anyway, I took your advice and we are trying to start the GFCF

diet. Actually we are starting with the Gluten Free first and then

then quit the milk products later. It was too hard to quit all at

once. It is extremely hard and expensive to break our old habits of

gluten everything. I just spent $100 at Whole foods and walked out

with 3 bags of food. I think I just need to sit down and plan the

meals and snacks for each week and maybe that will take some of the

frustration out of standing at my pantry and fridge trying to figure

out what to give my son to eat. Fortunately, I have a new neighbor

who is all about the health food and holistic/naturopathic

medicine. They eat gluten free everything just because they want

to. She is very supportive of our efforts.

Good News - They found the results to the other fatty acids and

carntine tests and are going to snail mail them to me. I will be

sure and update with the results when I receive them.

I also met with the pediatrician on Friday to discuss the results

and he suggested I review them with the gastrologist and

neurologist. I am not sure what they will say but there sure seem

to be a lot of unknowns.

Thanks again for your reply!!!

Christy

>

> I am so sorry to hear about your son's reaction to the

sedation/anesthesia. That must

> have been extremely scary. I just want to comment on one of the

blood tests, you asked:

> >Also, does anyone know why the GLIADIN AB, IGG would be so high?

>

> Three possible reasons: gluten-sensitive enteropathy, celiac

disease, and IgA deficiency--

> and for any of these I would get all the gluten out of his diet

immediately. He should also

> be tested for total IgA and for other serological tests namely

anti-tissue transglutaminase

> IgA, and anti-gliadin IgA. I wouldn't consent to a small bowel

biopsy though until you find

> out what happened to him with the reaction to sedation.

>

> It's possible that they are withholding the results of the fatty

acid testing to do them over

> because they may not have come out as normal as expected, or else

the doctor doesn't

> want you to know that your child may have a metabolic fatty acid

disorder because of

> liability risks and so they " lost " them. (I guess I sound cynical,

but I have seen things like

> this happen, and I mean I have WITNESSED the doctors doing them.)

can give you

> some better advice about the rest of the tests and the reactions

(maybe privately). )

>

> The first thing to do, though, is to get him off the wheat,

barley, rye and oats and any

> derivative--look at the celiac sites or the ones for GFCF diets--

because if he is gluten-

> sensitive he will not be absorbing fats properly or oil soluble

vitamins like A, D, E and K.

> Lack of vitamin K can cause a hemorrhage. We've been talking

about E a lot on this list.

> Lack of A compromises the immunity of the mucus membranes. It

won't hurt for vitamin E

> to be high normal.

>

> OK, I don't want to scare you, but do look into gluten-free diets

immediately and make

> sure those fatty acid tests are REPEATED, soon, if they lost them.

I know it's hard to make

> a child go through another blood draw, but it may be extremely

important.

>

> Also, you must document this all immediately, get copies of his

medical records before

> they get lost too, and make sure that if he has to have anesthesia

again, the doctors all

> have those records and your description of what happened BEFORE

the procedure.

>

> Peace,

> Kathy E.

> '

> > NEXT, His blood test results show the following issues:

> > -Anion Gap is low (8) | normal is 9-15

> > -He had virutally no (<1) CARNOSINE | What is normal?

> > -His CYSTINE was low (16) | normal is 18-82

> > -LYSINE was low (92) | normal is 110-290

> > -GLIADIN AB,IGG was very high (36.8) | normal range is <= 20

> >

> > -His vitamin E seemed on the high end of normal (16.1) | normal

is

> > 5.5-17

> > -It seems like something may have gotten messed up in the orders

of

> > the fatty acids and CBC. So, I don't have those results.

> >

> > I read that a low anion gap is relatively rare but may occur

from

> > the presence of abnormal positively charged proteins, as in

multiple

> > myeloma (SCARY), or in the setting of a low albumin level. THen

I

> > read that albumins are crucial for transporting fatty acids. I

did

> > not see a nubmer on Albumin though for the blood tests. Is this

> > something that would have been in the fatty acid results?

> >

> > Also, does anyone know why the GLIADIN AB, IGG would be so high?

> >

> > Any thoughts are appreciated.

> > Thanks,

> > Christy

> >

>

[Guest guest]

Kathleen,

Thank you so much for your detailed reply. I am sorry I have been

MIA for several days. I have been swamped with my work and my son

and I have been fighting a bad cold and now it appears Mason may

have contracted another UTI. It has been an exhausting week and

weekend!

Anyway, I took your advice and we are trying to start the GFCF

diet. Actually we are starting with the Gluten Free first and then

then quit the milk products later. It was too hard to quit all at

once. It is extremely hard and expensive to break our old habits of

gluten everything. I just spent $100 at Whole foods and walked out

with 3 bags of food. I think I just need to sit down and plan the

meals and snacks for each week and maybe that will take some of the

frustration out of standing at my pantry and fridge trying to figure

out what to give my son to eat. Fortunately, I have a new neighbor

who is all about the health food and holistic/naturopathic

medicine. They eat gluten free everything just because they want

to. She is very supportive of our efforts.

Good News - They found the results to the other fatty acids and

carntine tests and are going to snail mail them to me. I will be

sure and update with the results when I receive them.

I also met with the pediatrician on Friday to discuss the results

and he suggested I review them with the gastrologist and

neurologist. I am not sure what they will say but there sure seem

to be a lot of unknowns.

Thanks again for your reply!!!

Christy

>

> I am so sorry to hear about your son's reaction to the

sedation/anesthesia. That must

> have been extremely scary. I just want to comment on one of the

blood tests, you asked:

> >Also, does anyone know why the GLIADIN AB, IGG would be so high?

>

> Three possible reasons: gluten-sensitive enteropathy, celiac

disease, and IgA deficiency--

> and for any of these I would get all the gluten out of his diet

immediately. He should also

> be tested for total IgA and for other serological tests namely

anti-tissue transglutaminase

> IgA, and anti-gliadin IgA. I wouldn't consent to a small bowel

biopsy though until you find

> out what happened to him with the reaction to sedation.

>

> It's possible that they are withholding the results of the fatty

acid testing to do them over

> because they may not have come out as normal as expected, or else

the doctor doesn't

> want you to know that your child may have a metabolic fatty acid

disorder because of

> liability risks and so they " lost " them. (I guess I sound cynical,

but I have seen things like

> this happen, and I mean I have WITNESSED the doctors doing them.)

can give you

> some better advice about the rest of the tests and the reactions

(maybe privately). )

>

> The first thing to do, though, is to get him off the wheat,

barley, rye and oats and any

> derivative--look at the celiac sites or the ones for GFCF diets--

because if he is gluten-

> sensitive he will not be absorbing fats properly or oil soluble

vitamins like A, D, E and K.

> Lack of vitamin K can cause a hemorrhage. We've been talking

about E a lot on this list.

> Lack of A compromises the immunity of the mucus membranes. It

won't hurt for vitamin E

> to be high normal.

>

> OK, I don't want to scare you, but do look into gluten-free diets

immediately and make

> sure those fatty acid tests are REPEATED, soon, if they lost them.

I know it's hard to make

> a child go through another blood draw, but it may be extremely

important.

>

> Also, you must document this all immediately, get copies of his

medical records before

> they get lost too, and make sure that if he has to have anesthesia

again, the doctors all

> have those records and your description of what happened BEFORE

the procedure.

>

> Peace,

> Kathy E.

> '

> > NEXT, His blood test results show the following issues:

> > -Anion Gap is low (8) | normal is 9-15

> > -He had virutally no (<1) CARNOSINE | What is normal?

> > -His CYSTINE was low (16) | normal is 18-82

> > -LYSINE was low (92) | normal is 110-290

> > -GLIADIN AB,IGG was very high (36.8) | normal range is <= 20

> >

> > -His vitamin E seemed on the high end of normal (16.1) | normal

is

> > 5.5-17

> > -It seems like something may have gotten messed up in the orders

of

> > the fatty acids and CBC. So, I don't have those results.

> >

> > I read that a low anion gap is relatively rare but may occur

from

> > the presence of abnormal positively charged proteins, as in

multiple

> > myeloma (SCARY), or in the setting of a low albumin level. THen

I

> > read that albumins are crucial for transporting fatty acids. I

did

> > not see a nubmer on Albumin though for the blood tests. Is this

> > something that would have been in the fatty acid results?

> >

> > Also, does anyone know why the GLIADIN AB, IGG would be so high?

> >

> > Any thoughts are appreciated.

> > Thanks,

> > Christy

> >

>