Dear Maria,



Thank you so much for replying. It is one more option I have available to figure out the name for this whole thing. Good luck with your next ge appt.





Ann

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

Replying to:

Hi Ann,

you know, you have the same exact name as my High school librarian- Ann- my friend calls her annie since she is her friend...What a coincidence!same moniker- doppelganger!





I am amidst trying/pleading/begging to get tested for DH- see my gripes/ reception elsewhere.

I also have Autism-asperger's syndrome- the common link is an intolerance for Gluten...



Anyway, there is a new find in autism grps ..It's called Leaky Gut syndrome/gut impermabiliuty..which is why we look so constipated/bloated...

There are many GI studies- one is Dr.Wakefield on 12 children. He has been attacked by other scientist (studies bought by pharmaceutical companies) and was forced to leave UK for the US.

He was one of the few (there are others) that did biopsies/colonscopies on children---he found gluten punches holes in iuntestinal wall- the intolerance floasts upstream- in blood and to brain- neurokillers---this might not be the case for DH/CD....I wish i had more info/links and names of other doctors..There is a doctor in NYC that wanted to study this but his hospital reneged funding.





I am having a GE appointment next week- i better not be treated as usual....



Maybe annie is of kin? How many Armenians have that name?



Maria Rosa

Montreal,Canada

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

Replying to:

I need help. For the last 3-4 years, I have had problems with perirectal abscess, diarrhea, and now an incredibly itchy reddened rash. My colon biopsies are negative for Crohns and positive for Collagenous Colitis, a commonality to Celiac disease. My duodenal biopsies are negative although my endomysial antigen is positive through blood work. I am symptomatic with lots of diarrhea. Now, (although I shouldn't say now as I have had this blistery, itchy, patchy, reddened rash for well over a year), this rash is out of control. I am so incredibly uncomfortable as well as embarrassed by it's appearance. I saw the dermatologist today and she says it looks like Dermatitis Herpetiformis which is associated with Celiac disease. My Gastroenterologist said I don't have Celiac Disease because my dueodenal biopsy was negative. Sounds confusing, I am sure as I am confused. I had started to strictly follow a gluten free diet but was lead to believe I need not. I was started on Paxil as I was told that perhaps my stress level was causing my bowel changes. (I was also told my stress level caused my infertility years ago just prior to having a ruptured ectopic pregnancy due to endometriosis.) But , what can you do, physicians label difficult to diagnose cases as crazy often enough. I would welcome any ideas as I await this skin biopsy result that was done today.



Thank you,



Ann

I tried to post the Autistic colitis vis-a-vis other gastro photos



but it didn't get up here unfortunately.

Remember- not for celiac/Dh but interesting phenomenon/theory-i can't find the leaky gut explained anywhere on autism sites.

Here are the photos of intestinal colonscopies etc...



Esophagitis with Ulceration



Duodenitis with Ulceration



Distal Ileal LNH





Distal Ileal LNH



Colonic LNH



Autistic Colitis







Physical Health in Autism

Woody R. McGinnis M.D.





Irene (Vicky) Colquhoun

1920-2000



Parent Pioneers



Bernard Rimland

Ellen Bolte

Brenda O’Reilly

Victoria Beck

Rik Rollens

The Mercury Team



Autism and ADHD are Symptoms



Multiple underlying problems

Variation and commonality

Gut and nutrition paramount



Cornerstones



Suboptimal Nutrition

Food Intolerances

Microbial Overgrowths

Toxins



Gut Disease Predominates



Esophagitis 69%

Gastritis 42%

Duodenitis 67%

Colitis 88%





Esophagitis with Ulceration



Duodenitis with Ulceration



Distal Ileal LNH





Distal Ileal LNH



Colonic LNH



Autistic Colitis







Autistic Gut Symptoms



Abdominal pain 69%

Chronic diarrhea 58%

Constipation 35%

Night-awakening 42%



Gut Status



Poor digestion and absorption



Leaky gut: proteins out, toxins and antigens in



Microbial overgrowths



Poor enzyme production



Altered signaling to CNS



Gut Dysfunction















Poor Acid Production



Reasons: low zinc, endotoxins,

peptides, acidosis and mercury



Effects: poor digestion and poor

infection control





Autism Viewed from the Gut



Casein/gluten-free diets

The key peptidase (DPPIV) is produced by the intestinal brush border and paneth cells



The Gut and…



Secretin



Made by intestine

Stimulates digestive enzymes

Increases blood flow to intestine

Increases immune levels in bile

Tightens leaky gut



The Gut and..



IVIG, Transfer Factor and

Anti-viral Agents

May suppress chronic intestinal

infection, or even an intestinal

autoimmune process.



The Gut and…



DMSA / Lipoic Acid

Mercury and cadmium avidly bind intestine

and are highly caustic

Mercury blocks vitamin B6 and DPPIV

in the gut

Antibiotic-altered flora may recirculate mercury

to the gut



The Gut and…



Bethanecol

Trophic to intestinal mucosa

Stimulates digestive enzymes and

paneth cells which release defensins

to control overgrowths

Helps acid production and reflux



The Gut and…



Cod liver oil

Vitamin A supports GI membranes and

resistance to infection, especially measles



EPA (a derivative omega-3) is a potent

anti-inflammatory, lowers oxidative

stress



The Gut and…



Zinc

Protects all membranes from free

radicals

Tightens leaky gut

Needed for acid production

Critical protection from infection



DAN Think-Tank 2000



Hallmark Pilot Study: Nutritional Status of Autistic Children

(Audya and Vogelaar)



Sensitive assays



Low Nutrient Levels









Other Key Deficiencies



Magnesium often low by red blood-cell measurement



Calcium low by urinary excretion



Membrane Fatty Acids







Very Low Sulfate



Rosemary Waring discovery

Sulfate only 20%

Poor sulfate production

Greater sulfate utilization



Low Functional Levels



Biotin 14 of 15 children

B12 6 of 15 children

Folate 5 of 13 children

B6 binding low in nearly all



Laboratory Indices of Vitamin and Mineral Deficiency in Autism



Defeat Autism Now

27 October 2002

San Diego



Tapan Audhya Ph.D., Vitamin Diagnostics

Emar Vogelaar Ph.D., European Laboratory of Nutrients





Low Nutrient Levels in Autism (187 Autistic, 11-16 y.o vs. 10-17 y.o. controls)











Low Nutrient Levels in Autism











Low Nutrient Levels in Autism 187 Autistics (11-16 y.o.) v. Controls (10-17 y.o.)











Low Nutrient Levels in Autism











Low Minerals in Autism







Environmental Toxins in Autism?



Some Clues:



D-glucaric acid increased in 78%



Low plasma glutathione levels:



lower range in autism (1.2-4.1 micromoles/ml v. 3.8-5.5 in controls)

46% autistics below normal













Elevated Toxins in Autism

(41 autistics, 24 controls)











Toxins in Autism









Organic Toxins in Autism









Organic Toxins in Autism









Oxidative Stress



Low anti-oxidant levels: Vitamin A,

Vitamin C, Zinc, Selenium, Taurine



Weak hepatic detoxification



Greater toxic burdens



Good response to antioxidants



Especially Sensitive to Oxidative Stress



Gut: extreme sensitivity of gastrointestinal mucosa to free-radicals

Brain: high lipid, low GSH, low metallothionein levels





Goal: Lessen Oxidative Stress



Minimize toxins, infections, allergens

Give plenty of anti-oxidants

Support detoxification metabolism:

Vitamins B6, B12, (Folate)

Magnesium, Zn, Selenium (folic acid)

(Methionine)



Poor Immunity



Low CD20+ (B-cells) 48%

Low NK-cell function 40%

Low CD4+ (T-cells) 28%

Poor T-cell function p<.001

Low IgG sub and IgA 20%

C4A null allele 57%

Absent vaccine titers 5/13



Autoimmunity in Autism



Familial: mothers X 8

Anti-MBP/NFP/GFAP 58/55/32%

IgM to brain nuclear / endo 36%

Antibody to 7 neuronal proteins

MBP macrophage inhibition 77 v 0%

Basolateral IgG + complement

CD8+ infiltration L.P. and epith.

Anti-MMR, (only measles) 65 v 0%



Nutrients and Autoimmunity



Low Vit A: increased IgM in experimental

murine autoimmunity (PubMed 660997



Experimental T-cell autoimmunity: EFA

deficiency or omega-3 supplementation

increased autoimmunity; omega-6

protective in both T-cell and Ab-

mediated autoimmunity

(PubMed 10096116)



Treatment



Supplements

Food avoidance

Suppress overgrowths

Detoxify



Really Key Nutrients



Zinc

Magnesium

Calcium

Vitamin B6

Fatty Acids

Vitamin A

Vitamin C

Vitamin E

Vitamin B12

Biotin



Supplementation

History, physical, lab, empirical

Don’t be deceived: use sensitive measurements

Keep re-checking to confirm

Changing needs and variability



Rules-of-Thumb

Introduce interventions individually

Smaller doses may be necessary, especially at first

Continue interventions unless reason to stop

If combination nutritional formulations are not well-tolerated, add one-at-a-time



One-at-a-Time

Build sequentially

Zinc, then P5P/Magnesium Glycinate, Calcium, Selenium, C, E, Multi-Vit without Copper, Biotin, B12, Cod liver oil (for Vitamin A)

Really assure zinc

Away from food, minerals and P5P Zinc/Manganese about 3:1



Fatty-Acid Basics

Pre-treat with anti-oxidants

Treat low-normal GLA, DGLA and EPA lab values

Dry hair or skin, allergy: usually need fish oil EPA

Infections, leaky gut: usually need evening primrose GLA





Other Great Nutrients

MSM for elemental sulfur

Taurine for bile and for brain

Glutamine

Preferred energy for the gut

Trophic to bowel and mucin

Improves gut immunity

Careful if high ammonia



Support Digestion

Full digestive enzymes,

including disaccharidases



Frequent feeding, stews, amino acid

formulations, bethanecol



Break the inflammatory cycle: avoid

IgG and IgE foods.



Suppress overgrowths. EPA,

gastrocrom, anti-oxidants



Food Intolerances

Urinary Peptides or empiric trial of

casein/gluten-free

IgG blood-test for food allergies. Add

IgE test if conventional allergies.

Shiners, red cheeks/ears, teeth-

grinding, bed-wetting, ear or

sinus infections, mood swings

Lactose, sugar and phenolic

intolerances by observation





Probiotics Always

Improve overgrowths, digestion, membrane integrity

Refrigeration is vital

O.K to mix-and-match

Lactobacillus GG for clostridia

Could aggravate acidosis





Gut Overgrowths

Get specialized studies: parasites, stool cultures and organic acids

Antifungals, probiotics and colostrum often needed long-term

Low-glycemic diet, digestive enzymes, evening primrose oil, zinc and cod liver oil all help

Promising: IVIG, TF





Urinary Pyrroles

Useful, economical, may be pivotal.

Very toxic. Microbes or Pollution?



Elevation makes zinc and Vitamin B6

a top priority



Careful handling instructions: highly

labile



“Mauve Factor” Means Pyrroles

Measurable in urine as Kryptopyrrole

Mono-pyrrole

structure

Pyrroluria is

treatable:

B6 and Zinc



Mauve Factor

Down Syndrome 70%

Schizophrenia 50-60%

Autism 30-50%

ADHD 30%



Also Mental Retardation, Depression, Alcoholism, and Delinquency



Strong familial tendency



The Mauve Factor

Elevated pyrroles imply:



Zinc and B6 deficits, which vary individually and which fluctuate

Poor stress tolerance

Pfeiffer’s Correlates



Zinc spots

Stretch marks

Pale Skin

Frequent URI’s

Food intolerances



Breath / body odor

Mood swings

Morning nausea

Upper abd. pain

Poor dream recall



Substrate Requirement for Maximal Activity of P5P Dependent Enzymes







Walsh’s Correlates

Zinc spots

Fair complexion

Poor breakfast-eater

Low stress tolerance

Hyperactivity

Light, sound, odors

Stitch in side

Excessive anxiety or pessimism

Absent or poor dream recall

Explosive temper



Pyrrole Primer

Levels correlate reasonably well with many symptoms

Zinc supplementation lowers measured pyrrole levels (Hoffer)

B6 supplementation lowers measured pyrrole levels (McCabe)

Unstable: ascorbate preservative; avoid light, heat, delays

Sufficient Zn and B6 keep down pyrroles



The Pyrrole Family











Pyrrole-Zn-P5P Complex













P5P-Dependent Enzymes









Pharmacokinetics of Vitamin B6 and P5P in Autistic and Control Children











Pyridoxal Kinase Activity











Substrate Requirement for Maximal Activity of P5P Dependent Enzymes









Mauve Factor Levels and B6 (10mg/kg/day) + Zn (25mg) + Mg (400mg) in Autism









Detoxification



Organic foods, pure water

Clean living environment

No additives or flavor enhancers

Regular bowel movements: fiber, mag-citrate, vitamin C, bethanecol

Plug nutritional holes and suppress overgrowths

DMSA / Lipoic Acid metals protocol





Basic Lab List



Stool parasites, culture, analysis

Organic acids

Urine pyrroles

Hair analysis

Serum IgG / IgE food allergy

RBC minerals

Amino acids

Peptides

RBC fatty acids

Vitamin levels

Viral and auto- immune titers

PCR for mycopl. and chlamydia

Toxin testing

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

Replying to:

Hi Ann,

you know, you have the same exact name as my High school librarian- Ann- my friend calls her annie since she is her friend...What a coincidence!same moniker- doppelganger!





I am amidst trying/pleading/begging to get tested for DH- see my gripes/ reception elsewhere.

I also have Autism-asperger's syndrome- the common link is an intolerance for Gluten...



Anyway, there is a new find in autism grps ..It's called Leaky Gut syndrome/gut impermabiliuty..which is why we look so constipated/bloated...

There are many GI studies- one is Dr.Wakefield on 12 children. He has been attacked by other scientist (studies bought by pharmaceutical companies) and was forced to leave UK for the US.

He was one of the few (there are others) that did biopsies/colonscopies on children---he found gluten punches holes in iuntestinal wall- the intolerance floasts upstream- in blood and to brain- neurokillers---this might not be the case for DH/CD....I wish i had more info/links and names of other doctors..There is a doctor in NYC that wanted to study this but his hospital reneged funding.





I am having a GE appointment next week- i better not be treated as usual....



Maybe annie is of kin? How many Armenians have that name?



Maria Rosa

Montreal,Canada

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

Replying to:

I need help. For the last 3-4 years, I have had problems with perirectal abscess, diarrhea, and now an incredibly itchy reddened rash. My colon biopsies are negative for Crohns and positive for Collagenous Colitis, a commonality to Celiac disease. My duodenal biopsies are negative although my endomysial antigen is positive through blood work. I am symptomatic with lots of diarrhea. Now, (although I shouldn't say now as I have had this blistery, itchy, patchy, reddened rash for well over a year), this rash is out of control. I am so incredibly uncomfortable as well as embarrassed by it's appearance. I saw the dermatologist today and she says it looks like Dermatitis Herpetiformis which is associated with Celiac disease. My Gastroenterologist said I don't have Celiac Disease because my dueodenal biopsy was negative. Sounds confusing, I am sure as I am confused. I had started to strictly follow a gluten free diet but was lead to believe I need not. I was started on Paxil as I was told that perhaps my stress level was causing my bowel changes. (I was also told my stress level caused my infertility years ago just prior to having a ruptured ectopic pregnancy due to endometriosis.) But , what can you do, physicians label difficult to diagnose cases as crazy often enough. I would welcome any ideas as I await this skin biopsy result that was done today.



Thank you,



Ann