Re: for Elena- Malabsorption tests results, diseases of the small intestine, and general anesthesia for more testing

July 27, 2008

Elena,

In my specific case: clear deficiency of Vit A and D in plasma and confirmed

overgrowth of bacteria in the small intestine, what would you do? (According to

the Gastroenterologist, the bacteria feed on the sugar that makes it through the

small intestine to the colon because it was not processed where it had to be

processed).

You are telling me the biopsy (upper endoscopy) may be for nothing. I am not

sure if you meant that he may have Celiac disease even though he tested negative

for it. Would you still put him on a gluten free diet?

I really appreciate your help and opinion.

Laimi

July 27, 2008

Have you considered message 53124?

July 27, 2008

Laimi,

This is a tricky issue to decide on, but somebody else also said you should ask

what exactly they are looking to find. I am not a doctor, and you know best

what other health issues your child may have, but when a patient exhibits these

obvious malabsorptions --which my child has too BTW and so many of the kids with

apraxia and on the ASD because these are all immuo- metabolic disorders in

essence with multiple manifestations-- the neurological piece being just one

that is most obvious.

The causes are also multiple and may vary for each child, but it is usually a

combination of food intolerance/viral/bacterial/parasitic infections and leaky

gut is almost always present---hence the malabsorptions. What the intestinal

biopsy usually tells you if they are looking for gluten intolerance or other

major flattened vili

cause --is that the vili are flattened and you've got major absorption

problems. If that's the case, OK, you know it and get to work on healing the

lining addressing the food intolerances, supplementing the nutritional

unbalances etc.

However if, the vili are not obviously damaged, that does NOT rule our the leaky

gut and all of the consequences, you still need to address them the same way

based on the symptoms which are clearly due to malabsorption. So unless there is

reason to suspect something much worse than flattened vili (which in the opinion

of many biomeds are present anyway with a leaky gut just not enough for most

gastroenetrologists to declare it a Celiac problem) --well, then just to see if

the vili are flattened, that's just not a good enough reason to put a child

--with existing neurological issues no less, under total anesthesia.

As Dr. and so many others have pointed out, may of these kids with

neurological disorders--speech--auditory--sensory etc. have immune and

metabolic disorders as well and there is very likely a link between these and

the speech issues if not a direct cause. The deficiencies you mentioned

indicate clear malabsorption. A biomed would run other tests as well that would

help define the metabolic profile and treat that because if the vili are not

damaged enough most gastroenterologists just tell you to go home and not worry

about it--which is obviously not true.

These deficiencies need to be addressed and the causes eliminated as best as

possible. My daughter for example has a leaky gut, gluten casein + other food

intolerances--though the gluten is inferred and did not show up in her blood

work, but the biomedically trained pediatrician said that there is no way a

child would have such a highly negative reaction to casein and soy and corn and

so many of the foods she was eating at the time (bananas,

avocados, melon, almonds walnuts eggs etc) without the gluten peptides also

being a culprit and very likely the main culprit. But not all kids who are

intolerant test positive, Dr. ' son being one of them too. These tests,

and no tests are ever 100% accurate. That's why invasive testing should only be

done when there are no other ways to find out something major that will require

special treatment. In your child's case however, it seems like the same

treatment should be followed no matter what--he obvioulsy has a leaky gut and

whether it is damaged enough to be picked up by the biopsy or not is almost

irrelevant --just a matter of degree. How important is that to subject him

AGAIN to total anesthesia?

So in addition, my daughter also has problems detoxifying heavy metals and

possibly other toxines, which again is niot uncommon for kids with these

neurological patterns and has skin psoriasis of the scalp and other areas, which

is what took us to the biomed to begin with and that';'s how we found out these

issues are all linked to a heightened immune response and

food intolerances and neurological impairment due to or at the very least

aggravated by gluten /casein peptides which have a great affinity for brain

tissues.

Since I've delved into this biomed stuff I've learned that gluten + other food

intolerances but gluten especially can also be acquired, meaning no genetic

marker we know of can pin point it at this time--there are very likely many

genes that can eventually trigger gluten intolerance when the organism

encounters one of the --viral/bacterial/parasitic agents and even antibiotic use

(without the absolute MUST probiotic following th antibiotic treatments) that

pushes it over the edge. I understand your child ahs had other surgeries, well

antibiotic was probably used. Was he ever prescribed a probiotic afterward to

counteract the negative effects of the antibiotic wiping out all the good

bacteria? That alone could ahve caused a leaky gut and malabsorption as a

result. Very often the causes are multiple and more complex, but just to give

you an example. Once acquired the leaky gut brings on gluten intolerance which

can do much neurological and immune

system harm just like in individuals who are innately intolerant and even after

the gut heals, a gluten free diet is recommended for life to avoid further

neurological damage. I myself experienced this recently due to a sub clinical

chronic--multi year parasitic infestation (with neurological manifestations

peripheral neuropathy, malabsorptions of B12 SEVERE, D, A, iron and many others

which affected my adrenals and thyroid and I was always chronically fatigued and

my brain was in a fog, and I now understand that all this can pretty much

happen to anyone, it explains a lot of the chronic degenrative illness in the

elderly.

So honestly, if I were you I would find out from the doctor exactly what he is

hoping to find or rule out and more importantly what he will do to address it if

positive. What he would do different than what he would do without it since I'm

sure your child is not supplementing with the nutrients he has been found

deficient in. So understand these things first and then decide if the biopsy is

really needed. And because gastroenterologists don't really understand the true

implications of a leaky gut metabolically, neurologically, immune system wise

etc. I would not go to anotherone for a second opinion because his training is

the same and will tell you the same things. I would find a biomedically trained

physician to address these things in their complexity. Your child should

immediately be taking a good quality probiotic and supplementing with the

nutrients he is lacking and also trying to identify the cause of the

malabsorption. I don't really think

the biopsy can tell you a cause and

as far as i can see its presence is irrefutable, it's just a matter of degree.

I hope this helps and let me know if you have any other questions. Read all the

archives on biomedical stuff and learn about why it is an important approach for

all neurological impairments of unknown etiology--meaning not caused by an

obvious internal or external accident like stroke or bullet in the head etc.

Keep in mind this is an emerging field, the research is all there and more is

always needed, but clinical practice is very slow to catch up as their

guidelines come from the pharmaceutical industry and the surgical field when it

comes to treatments for anything. Good luck and learn as much as you can

especially before you subject your child to invasive procedures which may or may

not shed any light and if flattened vili is all they're looking for, well then

they should assume by the malabsorption symptoms that they are there and treat

the patient accordingly. This is what a biomedically trained physician would do

regardless of biopsy findings

and most likely would not recommend one for this reason alone.

All the best to you and your family,

Elena --mom to Ziana --age 3.11 y --severely apraxic but otherwise a happy

healthy child and doing great with her speech and learning now that appropriate

speech therapy/diet/supplements have been implemented.--she really is a

different child and learning new words every day.

From: Laimi Fernandez <talkltalk@...>

Subject: [ ] Re: for Elena- Malabsorption tests results,

diseases of the small intestine, and general anesthesia for more testing

Date: Sunday, July 27, 2008, 4:20 PM

Elena,

In my specific case: clear deficiency of Vit A and D in plasma and confirmed

overgrowth of bacteria in the small intestine, what would you do? (According to

the Gastroenterologist, the bacteria feed on the sugar that makes it through the

small intestine to the colon because it was not processed where it had to be

processed).

You are telling me the biopsy (upper

endoscopy) may be for nothing. I am not

sure if you meant that he may have Celiac disease even though he tested

negative for it. Would you still put him on a gluten free diet?

I really appreciate your help and opinion.

Laimi

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

July 28, 2008

Elena....

What a GREAT post!

That is one GREAT post with a lot of wisdom inside. While I recognized my son

had a milk intolerance because the effects on his speech were obvious, I

thought, well.... that was it.

WRONG!!!

I never thought MY kid was a yeasty kid. WRONG! I never thought MY SON

couldn't tolerate gluten and such. WRONG!

I was so wong on all counts. I couldn't figure out why my son would have such

regressions in speech. One step forward, two steps back. It was all because

something insidious was happening inside of his gut.

The problem with intestinal permeability is that the body eventually becomes

sensitive to more and more foods. This is because indigested food particles are

seeping through the gut into the bloodstream. The body then begins to mount an

immune response to it. Not necessarily an IgE response but also a secretin IgA

response and more commonly among our kids, a delayed IgG response.

Now, my son is intolerant of just about every carbohydrate out there as well as

eggs, chocolate..... and all types of processed sugar as well as high fructose

corn syrup. He has that perpetual back handed nose rub going (indicative of

allergies), flaming red ears when having a reaction and of course, those lovely

dark circles under his eyes.

So.... the good news is..... Once the gut is healed, many of these sensitivities

will fade away. Once the yeast, fungus, bacteria and possibly parasites are rid

of..... the neurological signs associated with continued regressions disappear.

......and so does all of that constipation and diarrhea. The intestinal lining

of the gut takes about 5 days to replenish itself but complete healing takes

much longer than that.

The bad news is..... the longer the gut is left untreated, the more food

sensitivities emerge as more and more of what you eat gets through the

intestinal lining..... and an immune response is built to that particular

substance. In the worst case scenarios, kids poop out indigested foods..... and

then you've really got a problem. So.... you basicly become sensitive to

everything that you regularly eat with most veggies, fruits (except citrus) and

meats being the exception.

We are at the stage of 'multiple' food sensitivities but not yet having

undigested food pass through the stool, thank goodness.

We have had Mark on a course of Diflucan for the past 3 weeks and he is soooooo

much better! To do this you need to remove all of the sensitive items,

generally the top 10 most common allergic foods to be safe..... completely avoid

yeast and sugar...... and then work on healing that gut lining.

Yeast changes form and migrates from the tummy into the bloodstream and finds

it's way into other tissues in the body. This is the same with fungi, molds and

parasites. So.... you can have yeast in your ears, throat and such and it can

have devastating neurological consequences. We must get rid of ALL of the

pathogens and do it all at the same time as healing the gut for best results.

After our course of Diflucan is finished, I am going to start Mark on Wild Oil

of Oregano capsules (the tincture is definately a NO GO since it is way too

strong) as many moms report good success of getting rid of all of the yeast and

bacteria with Wild OoO.

So..... if you think that " this is not happening with my child " .... well, just

look at how WRONG I was! Now we are doing it the right way and I wish I had

done this eons ago before my son had become sensitive to sooooooo many items in

his diet.

Janice

Mother of Mark, 13

[ ] Re: for Elena- Malabsorption tests results,

diseases of the small intestine, and general anesthesia for more testing

Date: Sunday, July 27, 2008, 4:20 PM

Elena,

In my specific case: clear deficiency of Vit A and D in plasma and confirmed

overgrowth of bacteria in the small intestine, what would you do? (According

to

the Gastroenterologist, the bacteria feed on the sugar that makes it through

the

small intestine to the colon because it was not processed where it had to be

processed).

You are telling me the biopsy (upper

endoscopy) may be for nothing. I am not

sure if you meant that he may have Celiac disease even though he tested

negative for it. Would you still put him on a gluten free diet?

I really appreciate your help and opinion.

Laimi

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

July 28, 2008

All of this is true and all of it is outlined in the SCD diet. Problem

is that is a pretty extreme diet that must be safely monitired. Sadly,

during the one year I have been trying to get help with that no doc has

stepped up and I have had only one mom who was able to help. I am on

the fence with that or Mother Essential. SCD is appealing because it

removes the threats you mention. Done incorrectly thouugh and bad

things can happen. If beans are introduced too early problems arise.

Same with nuts. Then the meat causing rising ammonia levels. You see

where I am coming from. Mother Essential avoids allergens and balances

blood sugar. That is why we may try that first.

July 28, 2008

What test did you do for food allergy/sensitivity?

July 28, 2008

Elana,

Janice is right on the money! Go with it. I believe a mom who has lived it

is worth any docs advice. Good Luck!

Colleen

Re: [ ] Re: for Elena- Malabsorption tests

results, diseases of the small intestine, and general anesthesia for more

testing

Elena....

What a GREAT post!

That is one GREAT post with a lot of wisdom inside. While I recognized my

son had a milk intolerance because the effects on his speech were obvious, I

thought, well.... that was it.

WRONG!!!

I never thought MY kid was a yeasty kid. WRONG! I never thought MY SON

couldn't tolerate gluten and such. WRONG!

I was so wong on all counts. I couldn't figure out why my son would have

such regressions in speech. One step forward, two steps back. It was all

because something insidious was happening inside of his gut.

The problem with intestinal permeability is that the body eventually becomes

sensitive to more and more foods. This is because indigested food particles

are seeping through the gut into the bloodstream. The body then begins to

mount an immune response to it. Not necessarily an IgE response but also a

secretin IgA response and more commonly among our kids, a delayed IgG

response.

Now, my son is intolerant of just about every carbohydrate out there as well

as eggs, chocolate..... and all types of processed sugar as well as high

fructose corn syrup. He has that perpetual back handed nose rub going

(indicative of allergies), flaming red ears when having a reaction and of

course, those lovely dark circles under his eyes.

So.... the good news is..... Once the gut is healed, many of these

sensitivities will fade away. Once the yeast, fungus, bacteria and possibly

parasites are rid of..... the neurological signs associated with continued

regressions disappear. .....and so does all of that constipation and

diarrhea. The intestinal lining of the gut takes about 5 days to replenish

itself but complete healing takes much longer than that.

The bad news is..... the longer the gut is left untreated, the more food

sensitivities emerge as more and more of what you eat gets through the

intestinal lining..... and an immune response is built to that particular

substance. In the worst case scenarios, kids poop out indigested foods.....

and then you've really got a problem. So.... you basicly become sensitive to

everything that you regularly eat with most veggies, fruits (except citrus)

and meats being the exception.

We are at the stage of 'multiple' food sensitivities but not yet having

undigested food pass through the stool, thank goodness.

We have had Mark on a course of Diflucan for the past 3 weeks and he is

soooooo much better! To do this you need to remove all of the sensitive

items, generally the top 10 most common allergic foods to be safe.....

completely avoid yeast and sugar...... and then work on healing that gut

lining.

Yeast changes form and migrates from the tummy into the bloodstream and

finds it's way into other tissues in the body. This is the same with fungi,

molds and parasites. So.... you can have yeast in your ears, throat and such

and it can have devastating neurological consequences. We must get rid of

ALL of the pathogens and do it all at the same time as healing the gut for

best results.

After our course of Diflucan is finished, I am going to start Mark on Wild

Oil of Oregano capsules (the tincture is definately a NO GO since it is way

too strong) as many moms report good success of getting rid of all of the

yeast and bacteria with Wild OoO.

So..... if you think that " this is not happening with my child " .... well,

just look at how WRONG I was! Now we are doing it the right way and I wish I

had done this eons ago before my son had become sensitive to sooooooo many

items in his diet.

Janice

Mother of Mark, 13

[ ] Re: for Elena- Malabsorption tests results,

diseases of the small intestine, and general anesthesia for more testing

<mailto: %40>

Date: Sunday, July 27, 2008, 4:20 PM

Elena,

In my specific case: clear deficiency of Vit A and D in plasma and confirmed

overgrowth of bacteria in the small intestine, what would you do? (According

to

the Gastroenterologist, the bacteria feed on the sugar that makes it through

the

small intestine to the colon because it was not processed where it had to be

processed).

You are telling me the biopsy (upper

endoscopy) may be for nothing. I am not

sure if you meant that he may have Celiac disease even though he tested

negative for it. Would you still put him on a gluten free diet?

I really appreciate your help and opinion.

Laimi

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

July 28, 2008

Colleen I understand this may be necessary for some who have children

that don't respond to other methods like therapy and fish oils alone,

but all the parents that are in this group live with 'it' in some way

and most never have to eliminate dairy. I know this is a hot

debate here because some feel strongly against dairy but again as

I've posted the studies there is a rise in overweight short children

with the brittle weak bones of an elderly person due directly to

parents that stop dairy without the advice and supervision of a

medical doctor. Not to be blunt but short, fat with weak brittle

bones and dietary limitations doesn't go well with trying to get a

speech impaired child accepted by peers.

We drink raw milk and use some other raw dairy in our home like

butter but we are not fanatic about it. Our kids eat Dannon or

Yoplait yogurt and we go for ice cream cones in the summer just like

anyone else. And...and this is a huge and -we notice absolutely no

difference in either of our boys or me or Glenn when we do eat

dairy.

The no dairy route for a child that has no known allergies could be for

those rare children that don't respond to the basics of therapy

and fish oils if under supervision by a doc. And BTW this is coming from a

former child that was diagnosed celiac as an infant who spent years

in an out of hospitals who had to grow up on a special diet. I never

thought that those days would come back to haunt me because up till

more recently it didn't come up here...and yet our success rate as a

group has always been high before all these talks of special diets.

Oh and about calcium and other sources -history says you can eat soft

bones but I'll stick with milk thanks.

" Yet it is possible to attain optimal health without dairy foods.

Price discovered groups using no dairy foods that had complete

resistance to dental decay and chronic disease; their diets

invariably included other rich sources of animal fats, calcium and

other minerals. The soft ends of long bones were commonly chewed, and

the shafts and other bones were used in soups. "

http://www.realmilk.com/healthbenefits.html

" Since calcium plays such a crucial role in so many areas of our

physiology, I'll just list the major ones here. Aside from the

obvious contribution to teeth and bones, it figures heavily in muscle

contraction, nerve impulse transmission, heartbeat regulation, blood

clotting, enzyme activation, even fluid balance in our cells.

To get the most of it from our food, a number of conditions have to

be just so. For instance, vitamin D is needed for proper calcium

absorption. So is adequate amounts of the amino acid lysine. Also

critical is the presence of phosphorus. A calcium to phosphorus ratio

(Ca/P) of from 2:1 to 1:1 has been shown to promote the highest

levels of absorption.

The ratio in raw milk is approximately 1.3:1 which falls nicely

within the optimum range. When the dietary Ca/P ratio moves the other

way, toward, say, 1:2, as it might with high-protein diets or heavy

consumption of carbonated soft drinks, calcium loss is elevated.

Other factors in foods can block the absorption of calcium or cause

its unwanted secretion as well. For instance, sodium and caffeine

both elevate calcium levels in the urine. Every cuppa (equivalent to

150 mg of caffeine), can cause the loss of 5mg of calcium. Foods that

contain oxalic and phytic acids, such as rhubarb, spinach and

soybeans, can block the absorption of calcium and other key

nutrients. " Chart here too

http://www.raw-milk-facts.com/calcium.html

=====

July 28, 2008

and others,

I think that depends on how severe your child is; on whether or not they have

full blown motor dyspraxia or just apraxia of speech. All children are

individuals and what works for one does not necessarily cut it for all. Kids

with full blown global dyspraxia have issues that extend to all of the body

systems and functions.

Again..... it is becoming common information that many, many children with these

issues have multiple food sensitivities that greatly contribute to their

condition. Not all, but many! Most good DAN doctors advise trying a

specialized diet of some sort and most appreciate the contribution of yeasts,

parasites, fungi, molds and bacteria to the condition of our children.

It is not the answer for all but it is truly the answer for many, many children

and it is absolutely worth noting. We have come a long way in the past 10 years

and it is important to avail ourselves of the new information out there and the

new research that definitively demonstrates the contribution of proprionic acid

to our children's neurological states.

Sometimes, you have to change your existing paradigms to reflect the current

research and to allow others to be availed of it. The amount of chemicals that

are added to our food these days renders them unpalatable to the digestive

system that is weak or immunosuppressed.

I have found this over and over again with Mark. He would get better with the

therapy and then regress once more. Until I discovered that it was food that

was doing this to him, I could not resolve his issues.

I wish that it were as simple as tossing a little vitamin E and fish oil down

his gullet and be done with it. But alas, it is far more complex than this. If

you only knew how I wish it were this simple!

Will he need to be on a special diet forever? I don't believe so. But I must

do this for him now and it really is not that tough. Eating good nutritious

foods that are easily digested for his system allows him to do many, many things

and enables him to keep up with his peer group. It is wonderful to watch and it

is pretty easy to forgo ice-cream and other junk food when he functions so well

without it.

I believe that every parent needs to do the research and discover what works

best for their particular child. Thousands and thousands of children are being

helped with the restoration of the digestive tract.... not just ASD kids but ALL

kids and to completely discount it without saying...... " it is worth

researching " is assuming that you know what is best for someone else's child.

What if you're wrong? Wouldn't it be more prudent to indicate that others are

being helped by such diets and noting that you didn't require it for your

children?

I do know that you use raw milk and other such 'goodies' that are indeed

special..... haven't you? We have no access to raw milk or I might just try it

for Mark because I do believe that it is the chemicals in milk that are the true

source of issue..... not necessarily the milk itself.

Various diets that have helped children are:

-The elimination diet

-The GFCF diet

-The CF diet

-The Specific Carbohydrate Diet (SCD)

-The Body Ecology Diet

-The Yeast Free Diet

I'm sure that there are more out there that I have missed!

If these diets did not help 'many' kids..... why would thousands and thousands

of mothers be putting their children on them? Why would lecturers, DAN doctors,

Environmental doctors, nutritionists, etc. be recommending them?

Are they all just full of baloney? All of those parents, those doctors...... us

who write on this board.... just advocating a tough lifestyle for the sake of

it? Not a chance! We tell our experiences because it has been one of the keys

to our child getting better. ...not the whole story, for certain, but a large

part of the puzzle that we are working on.

Could it be that you just might be wrong.... as I was myself.... in thinking

that my son did not need to get rid of all the pathogens for his body to work

properly? Not wrong for your child of course..... but wrong for my child and

perhaps other children.

To insinuate that special diets have no value because you didn't need to do it

is to discount all of the people who have healed their children with them. I

mean no disrespect since I am aware that you HATED special diets growing up....

probably as much as Mark HATES his! But your parents healed your tummy and I

darn well intend to do the same thing as your wonderful parents did.... HEAL my

boys' digestive system so that when he grows up...... special diets will be a

part of his past and NOT a part of his future! Just like it is for you.....

part of your past. I want the same for my boy as you have!

If I don't do this, I believe that my son will end up with ulcerative colitis or

crohns or some other horrible affliction. I want to get this done now while I

still can exert all the Mommy power that I have! ....and I know that I can do

it too! Because others have done it before me and I intend to follow their

lead.

Take care,

Janice

Mother of Mark, 13

[sPAM][ ] Re: for Elena- Malabsorption tests