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deafmonkey
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deafmonkey

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[Serious] GFCF Diet Research Journey for Autism/FASD/Schizophrenia/RP/MG/MD/CM

Hello folks on canchat,

Some of you may know I'm the deafblind fella here on DSL and have been here for awhile checking things out before I said much. I used to watch DKS, Dennifloss and some others around here but both have seem to be missing as of late as they knew about things for folks with Disabilities and such. I went through a lot over my life due to Unintended pregnancy and that's why I have many deafblind illnesses and many complex illnesses that many will never hear or know about.

I have been adopted by a family who raised 60 foster kids over 20 years and we grew the majority of the food that is eaten as it kept foster children much more calm and saner and I furthered the research on food a bit by following Dr Diane Black research into Gluten-Free, Casein Free diets for FAS/Autism/Schizophrenia I furthered that research on my family and some others with complex illnesses like Unintended Pregnancy / Muscular Dystrophy / Myasthenia Gravis / Chiari Malformation / Some forms of Retinitis Pigmentosa(Refsum Disease) with varying degrees of success.

I can definitely outright tell you from watching other Schizophrenics who follows my research have gotten off all their pills and they seem to be doing very very well for themselves at another local forum.(I'm also on a private forum for watching how this research gets peer-reviewed)

I have noticed there is a lot of people around canchat with Disabilities and maybe this research will help them and their families as it super has helped me as well.

I used to be on over 1000+ pills a month about 50 a day until 4 years ago when I modified the diet research of Dr Diane Black down to get me off all the pills(None of which really worked for me due to the Doctor being a known Fraud that I was unaware of at the time). I still do however use High CBD Cannabis as medicine when needed. Due to Myasthenia Gravis THC Cannabis is no good long-term and not recommended as it will likely worsen that disease(As I have an acetylcholine disorder where there's not enough and THC is known to block Acetylcholine whereas high CBD is known to stimulate it a bit in mice. Despite all that I don't always recommend Medical use of Cannabis to Myasthenics as we get very unique side effects from it but it is sometimes better than the other stuff.). I have been super lucky to have Dr Daniel Drachman over at Johns Hopkins one of the premier Myasthenia Gravis doctors help me out in the past and some people from John Hopkins, Yale and others. As there's not anyone in Canada who really researches Myasthenia Gravis that I'm aware of at this time. I have some experience in researching Cannabinoids as well.

I have decided to publish this GFCF research in public as some others mentioned they would like to take a look at it themselves as well. I figure with the wide public base of DSLr I would try here for more information and see if others may find it quite helpful and feel free to IM me about this stuff as well if you wish.

I still have some more years left to live due to over 20 years of researching this kind of thing for my complexities over the years and quite happy that I'm no longer on any medications and doing very well with diet and lifestyle alterations along with good people helping me out here and there. - With the internet things definitely got easier to figure out for things especially around 2015. When I first started there was no internet and the libraries really did not have much about the kind of complex things I have, thus very little was known about me.

Here are the links that will help you navigate around the forums for the research base and if you like some of the private stuff and would like to see further information IM me and I will share some of it.

»www.yongesterdam.com/for ··· 8&t=6651
»www.yongesterdam.com/for ··· 6&t=6432

Hope this may help some canchatters out as it as super helped me out as well

Have a good day

Deafblindmonkey
deafmonkey

deafmonkey

Premium Member

Re: [Serious] GFCF Diet Research Journey originally for Autism/FASD/Schizophrenia

Hello,

I have updated the intro to the GFCF research page a little(So people would have an understanding that it is peer-reviewed and such) and added a new post on it recently to show what is coming along with some more information added.

My use of English/Grammar is also getting a lot better with help by reading some here on DSLr and elsewhere as of late.

GFCF research page
»www.yongesterdam.com/for ··· 8&t=6651

New Post/Info@
»www.yongesterdam.com/for ··· 1#p35731

Hope this helps some others out there

Cheers
deafmonkey

deafmonkey

Premium Member

Due to seeing someone make a joke about midget porn on DSLr I remembered another disorder in my dwarfism which is kind of critical to know for my overlapping puzzles so I have updated the forums to reflect that as well.

I am one of the Spondyloepiphyseal Dysplasia type dwarfs and super lucky that I managed to outgrow it a bit that many cannot tell that I am a dwarf unless they're looking for it.

So I edited this post to reflect it.(I also added the unlucky statistics to each diagnosis as well to give some something to chew on.)

»www.yongesterdam.com/for ··· 1#p35731
deafmonkey

deafmonkey

Premium Member

GFCF.Research.txt
68,907 bytes
Hello Folks on DSLr,

Here's the whole base of my GFCF research journey that exists currently on Yongesterdam as of this post/writing. I'm happy enough to show an attachment in .txt as well to you folks on DSLr extracted from an E-mail copy. -- I only post the GFCF thread portion and not the recipe/other stuff however links are there for you to check if you like.

Please do ask my permission before redistributing this stuff elsewhere as I have spent thousands of hours on this.

Hope this helps some folks out here as it super helped others elsewhere as well.
cepnot4me
join:2013-10-29
L0C 1K0

cepnot4me to deafmonkey

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to deafmonkey

Re: [Serious] GFCF Diet Research Journey for Autism/FASD/Schizophrenia/RP/MG/MD/CM

Fantastic write up.
While I won't even to pretend to have knowledge comparable to these articles, you are making very valid arguments to conclude theories I've personally had for years.
Our diet, our life and our food are far more crucial to our health than we could suspect.
I'll probably read these more thoroughly when I have time, however, I just wanted to make mention and acknowledge your research falls not on deaf ears.
No pun intended.
deafmonkey
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deafmonkey

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said by cepnot4me:

Fantastic write up.
While I won't even to pretend to have knowledge comparable to these articles, you are making very valid arguments to conclude theories I've personally had for years.
Our diet, our life and our food are far more crucial to our health than we could suspect.
I'll probably read these more thoroughly when I have time, however, I just wanted to make mention and acknowledge your research falls not on deaf ears.
No pun intended.

Thanks for taking a look at this as I was beginning to wonder if it fell on deaf ears

I have learned much to my surprise that diet and lifestyle is far more crucial to our health than we could suspect since I undergone this major shift in diet/lifestyle changes 5 years ago as before I went under this diet and lifestyle changes my blindness was so severe and my cataracts were so severe that I could not really see very well however upon the diet changes my cloudy vision is no longer as cloudy that it is much better for me today and I thought it was interesting that diet would help with cataracts as well as they say there's no cure for that only surgery and such. However upon further research I did find out that if you have celiac disease that gluten can give you cataracts. Interestingly that my subcapular cataract were caused by drugs(immunosuppresive therapy), so if drugs could induce it I'm not surprised that diet could also be a problem for some forms of cataracts -- I never thought it could be reversed by diet and hydration until I experimented with the GFCF diet and I have learned a lot of surprising things by playing with the nutritional intervention therapy and super glad I actually did this stuff as I didn't know what to do about 5 years ago as my health got so super-bad the doctors didn't know how to help me that they were basically killing my health with many drugs that did not work for me. To have this diet get me off all medications was also a pleasant surprise and treat that I just had to share it with others to hopefully help them as it has helped me as I put thousands of hours into this research do know it to work very well for those who really need it, Though I think it could benefit basically anyone as it's pretty safe.

Thanks for chiming in to let me know that it does not fall on deaf ears

Take care and be well
deafmonkey

deafmonkey

Premium Member

Here's the latest version of my GFCF journey, There's not really much changes other than to say I have subcapular cataracts as well. -- I'm still translating some stuff from 2000pages of braille notes about this stuff into English so some can sort of understand-see me if they were to ever communicate with me sort-of deal. -- I'm getting better at translating American Sign/Braille to English however I am a bit slow at it.

The thing I have learned over the years is that I'm so-different like different that me and another person could never possibly know/understand each other unless they knew my list of subtle things I have though some days it's not as subtle when I'm not well. -- Many people would miss that I have 18 complex things if no one is looking for it. -- So it's one of those things I'm learning not to be afraid of sharing to help make friends and such.

I only share the complex things that are relevant for one to understand my complexities.

Edit:
Here's a partial list of the complex things I have to share in public view but the rest is in the text file. -- These are ones kind of more need to know.

Spondyloepiphyseal Dysplasia(Dwarfism) -- Affects 1 per 100,000
Adult Refsum Disease(PHYH) Retinitis Pigmentosa, deafblindness -- Affects 1 per million
Usher Syndrome type 2 (WHRN) - Retinitis Pigmentosa, deafblindness -- Affects 1 per 23,000
Chiari Malformation type IV - brain fell out of my head disorder -- Affects 1 per 1000
Syringomyelia - Syrinx -- Affects 8.4 per 100,000

Myasthenia Gravis - Lambert-Eaton Syndrome - Paraneoplastic syndrome - autoimmune diseases
^ Myasthenia affects 1-30 cases per million - Lambert-Eaton Syndrome(Only 400 people living at any time in the USA with LES/LEMS at any given time) - Paraneoplastic syndrome - Affects Unknown. /
Paraneoplastic Syndrome(Lambert-Eaton Syndrome/Small cell Carcinoma(50% possibility of coming lung cancer/possibly others.)
Muscular Dystrophy(FSHD type) - deafblindness -- Affects unknown
Coats disease - Exudative Retinitis, From Muscular Dystrophy deafblindness -- Affects .75 per 100,000/million
Subcapular Cataract - cloudy vision - likely due to Immunosuppresants/Retinitis Pigmentosa
Irlen syndrome - Visual Stress, Scotopic sensitivity syndrome, something like dyslexia -- Affects unknown

Dermatitis Herpetiformis / Celiac disease(90% likely but not 100% confirmed due to my DH diagnosis if one has DH then 90% they have celiac but 10% chance I do not have it.) -- More common
IamGimli (banned)
join:2004-02-28
Canada

IamGimli (banned) to deafmonkey

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to deafmonkey
Thanks for sharing your work. Quite a bit of interesting stuff in there.

I think everyone knows diet has a big impact on one's health but many probably underestimate just how big an impact it can have for someone whose health is already compromised. The compounding effects really are astonishing.
deafmonkey
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deafmonkey

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Thanks for checking it out Gimli,

It does contain a lot of interesting stuff and here's the links to my recent updates which some may find interesting if they're following this stuff

I'm finally getting my Leukodystrophy(Adult Refsum Disease) diet sorted out.
I also finally pretty much almost completed my medical history display map so others can sort of understand me much better as well as it's a super-lot of work I had to go through.

Here's the links to my recent updates since I last posted here.
#about my Leukodystrophy journey and medical history map.
»www.yongesterdam.com/for ··· 6#p35916

Some new recipes since last post.
Cornbread Loaf
»www.yongesterdam.com/for ··· 8#p35788

Amy's Chili W/Tofu
»www.yongesterdam.com/for ··· 4#p35804

Soup(Tomato)
»www.yongesterdam.com/for ··· 5#p35805

Forbidden Rice Ramen(Miso Soup Varient)
»www.yongesterdam.com/for ··· 9#p35819

Also the included attachments adds the new modifications though it may be tough to scan so I added 'Post update june 2015:' so one could do a find for it or check first link here.

Here's my updated post included here - Though a paragraph is snipped out.

Hello Kind folks,

This is taken from my private diary to be added here so others can know where I'm at on my journey

I also updated my map to be more complete so one can get a much better understanding of what I have to watch out for as no one really understands my medical history but me as it was taught to me since I was very young as they knew no one else would be able to monitor this stuff properly like I can.

I am doing much better today after eliminating cheese, butter, beef, lamb in the diet for 6 months or so now and replaced it with things like chicken, turkey, artificial cheese, earth balance or becel vegan spread instead of butter kind of thing.

I have mapped recently about my Leukodystrophy and I finally nailed it down to Adult Refsum Disease for being my leukodystrophy type, I also added future reference of things I have to look out for and known allergies to help one sort of understand my complexities a bit better.

I am now on a very small refsum disease support mailing-list which has been informative at times for me in the past few months which is a small community of about 100 people around the world. Some are from refsumdisease.org which has been a wealth of support for me when it comes to the Chelsea Westminster Adult Refsum Disease dietary guidelines, And they have approved some of my recipes I have done to be ARD safe with a twist.

Also Lorenzo's Oil did not work very well for me long-term I had to discontinue it early which I believe was related to Erucic Acid from Canola and that's one oil I don't touch as I remember how well I did not tolerate Canola well for reasons really not well understood.

Here's some more information about my Refsum Disease I have found interesting.

source:
»ulf.org/refsum-disease

Refsum Disease

What causes Refsum disease?

The peroxisome is responsible for the breakdown of certain branched chain fatty acids. A common branched chain fatty acid, phytanic acid, is shown below. It is different from the straight chain fatty acid shown above in that it has “branches” of carbon groups off the main carbon chain (branches are colored in blue).

Phytanic acid is a component of our diet, and therefore needs to be digested properly. The peroxisome is responsible for the breakdown of phytanic acid, and impairment of this specific function results in Refsum disease.
What are the clinical symptoms of Refsum disease?

Patients with Refsum disease do not generally show any obvious defects at birth, and growth and development appears normal. Initial symptoms will generally appear by age 20, although patients have been known who do not display symptoms until around age 50. The initial complaints usually involve vision problems, and/or weakness in the arms and legs. The disease is progressive, although there can be periods of unexplained remission. Below is a list of the most common symptoms of Refsum disease. We have included the clinical terms as well as a description of their meaning.

Retinitis pigmentosa: Retinitis pigmentosa is a disease of the eye, resulting from degeneration of a part of the eye called the retina. It affects night vision and peripheral vision, and eventually can lead to blindness.
Peripheral polyneuropathy: Peripheral polyneuropathy is the term for dysfunction of the nerves outside of the spinal cord. Symptoms may include numbness, weakness, burning pain, and loss of reflexes.
Deafness: loss of hearing
Cerebellar ataxia: Ataxia is wobbliness. Cerebellar ataxia refers to the fact that the defect is in a specific part of the brain (the cerebellum), and the incoordination and unsteadiness is due to the brain’s failure to regulate the body’s posture, as well as the strength and direction of the body’s movements.
Anosmia: loss of the sense of smell
Papillary abnormalities: abnormality of the pupils of the eye
Nystagmus: rapid, involuntary, rhythmic eye movements
Icthyosis: Icthyosis is a noninflammatory scaliness of the skin. These symptoms can range anywhere from scaliness of the palms and soles of the feet to scaliness on the trunk of the body.
Epiphyseal dysplasia: The epiphysus is the growth area at the end of a bone, while dysplasia means abnormal formation. This means that patients with Refsum disease often have shortened limbs.

How is Refsum disease diagnosed?

As we mentioned above, Refsum disease results from an inability to break down a particular molecule known as phytanic acid. Therefore, Refsum disease can be confirmed by a simple blood test that measures the levels of phytanic acid.

In addition, most known cases of Refsum disease result from defects in a protein known as phytanoyl-CoA hydroxylase, or PAHX. There are some common mutations which have been identified, which can allow family members to be screened in order to determine if they are carriers of the gene responsible for the disease. This can allow them to make informed decisions about having children.
What is the prognosis of Refsum disease?

Prognosis of Refsum disease varies dramatically. Strict adherence to a dietary regimen (see treatment, below) can cause the neurological symptoms to arrest, and nerve response can improve. Weakness, problems with walking, and scaliness of the skin can also improve. Prior to the initiation of dietary therapy, more than half of patients died before age 30. However, since the introduction of dietary therapy, very few patients have died so young.
What are the possible treatments for Refsum disease?

Nearly all phytanic acid is obtained from the diet, which means that dietary control is an option for Refsum disease. Patients are advised to keep consumption of phytanic acid below 10 mg/day (the normal intake is approximately 100 mg/day). Sources of high levels of phytanic acid include beef, lamb, full cream, milk, butter, and cheese. It is important to be careful to maintain weight, because loss of weight can cause release of stored phytanic acid from fat tissues. This results in an increase in plasma phytanic acid levels, and can lead to a worsening of symptoms. If there is difficulty reducing levels of phytanic acid in the plasma, sometimes plasmapheresis (replacement of the plasma) can help.

Also here's my updated diagnostic map/information taken from a private post here.

Unintended Pregnancy -- Pregnancy not intended
Adult Refsum Disease(PHYH) Retinitis Pigmentosa, deafblindness -- Affects 1 per million
Spondyloepiphyseal Dysplasia(Dwarfism) -- Affects 1 per 100,000 -- (Refsum Disease)
Leukodystrophy(Refsum Disease)
Usher Syndrome type 2 (WHRN) - Retinitis Pigmentosa, deafblindness -- Affects 1 per 23,000
Chiari Malformation type IV - brain fell out of my head disorder -- Affects 1 per 1000
Syringomyelia - Syrinx -- Affects 8.4 per 100,000
Klippel-Feil(Fusion of C6-C7) -- Affects 1 in 40,000

Myasthenia Gravis - Lambert-Eaton Syndrome - Paraneoplastic syndrome - autoimmune diseases
^ Myasthenia affects 1-30 cases per million - Lambert-Eaton Syndrome(Only 400 people living at any time in the USA with LES/LEMS at any given time) - Paraneoplastic syndrome - Affects Unknown. /
Paraneoplastic Syndrome(Myasthenia Gravis/Lambert-Eaton Syndrome/Small cell Carcinoma(50% possibility of coming lung cancer/possibly others.)
Demyelinating CNS disease - Borderline MS -- Affects unknown --(Myasthenia Gravis)
Muscular Dystrophy(FSHD type) - deafblindness -- Affects unknown
Morvans Chorea -- Affects ultra rare(Apparently like 18 reported cases in English literature)
Migraines/headaches -- More common
Coats disease - Exudative Retinitis, From Muscular Dystrophy deafblindness -- Affects .75 per 100,000/million
Posterior Subcapsular Cataracts - Had surgery and likely caused by Retinitis Pigmentosa/Immunosuppresants
Irlen syndrome - Visual Stress, Scotopic sensitivity syndrome, something like dyslexia -- Affects unknown

Dermatitis Herpetiformis / Celiac disease(90% likely but not 100% confirmed due to my DH diagnosis if one has DH then 90% they have celiac but 10% chance I do not have it.) -- More common

Very Diverse pharmaceutical allergies that may sometimes cause cervical fractures.

Things to watch out for that could come in relation to Myasthenia Gravis
Rheumatoid Arthritis
Graves Disease
Dmeylinating CNS Disease
Diabetes type 1
Small Cell Carcinoma

Misdiagnosis
PTSD - (Definitely misdiagnosis)
Restless Legs Syndrome(Definitely misdiagnosis)
Stiff person syndrome(Definitely misdiagnosis)

Known Allergies

Phytanic acid, Gluten, Penicillin(Many antibiotics IE:, Zithromax, Cipro, Neomycin, Gentamycin), Many beta blockers(IE: Propranolol), benzodiazeapines(IE: Clonazepam, Lorazepam, Triazolam), steroids(IE: Prednisolone), Magnesium, Botox, Quinine, Procainamide, Ketek, Calcium Channel Blockers(IE: Verapramil), Ibuprofen/Advil(Refsum Disease), Dexedrine, neuromuscular blocking agents, respiratory depressants IE: sedatives, hypnotics have to be used with caution in Myasthenics.

A list of specialists I may see to go with all this stuff to help someone get a bigger picture of this complex stuff.

Audiology,Ophthalmology,Dermatologist,Allergist,Dietician,Deaf-blind intervenor,Nephrologist
Genetic Specialist,Oncology(Paraneoplastic),Neurology,Neurosurgeon,General Practitioner
Cardiologist,Ear Nose and throat,X-ray/Radiologist, Endocrinologist

Have a good day

Gone
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Fort Erie, ON

Gone to deafmonkey

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to deafmonkey
The assertion that ASD has anything to do with diet is a false one, as it has been my experience that the symptoms of ASD manifest themselves well before moving from an infant diet to a child diet. It's just that people just don't know what they're looking at until developmental milestones are missed, which is why the whole cockamamie bull about the MMR become so 'popular' because that is roughly the same time as certain milestones are missed. There is also some promising research in the United States related to how a child raises their head when being pulled up being directly related to ASD risk as early as six months old, which has also been pretty accurate in my experience as well. Since this is well before diet would have any realistic impact on a child's development, with many even sill being breastfed at that point, it also points to the direction that diet has no impact on ASD.

Anav
Sarcastic Llama? Naw, Just Acerbic
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Anav

Premium Member

Thanks for that Gone, makes a lot of sense!

Gone
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Gone

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I have learned more about ASD in the last month then I ever thought I would ever have to learn in my entire life.
deafmonkey
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deafmonkey

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Interesting gone, As Autism provided the grant for that research, and I have seen many mixed reports on Autism for GFCF, Though many seem to do it for the gastrointestional problems, sensitivities and such.

This diet did help my brother out who's autistic but it does not seem to work for everyone in the Autism world as I get many mixed reports on this and Autism. I think they have a long ways to go on that yet. Though the researcher in charge would know more about this than I do for Autism.

It definitely helps folks like me as well, As I was given 3 years to live due to Myasthenia Gravis and it definitely has kept me much more stronger than I was before that I'm still able to walk and such which is amazing

Have a good day

Gone
Premium Member
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Fort Erie, ON

Gone

Premium Member

While there does seem to be a higher prevalence of gastrointestinal diseases among those with ASD, no definitive link has been established. There may be a similar genetic link between the two, but it's still a topic of ongoing research. IBD in particular is an autoimmune disease in the same family as arthritis and psoriasis, so a link between that an ASD would be very interesting, especially if children on biologic treatment for IBD show an improvement in specific ASD symptoms.
deafmonkey
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deafmonkey

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Hello Gone,

This is one area I have found interesting over the years however there's still more work to be done and it looks like there 'could' be a link to gluten and these disorders, and since this list had a list of many things that affects me and could be related to gluten that I got off the gluten, dairy and many things cleared up for me eventually.

Though this is from greenmedinfo and I'm not 100% certain how reliable they are but how they index things to pubmed has made me find the site interesting sometimes.

»www.greenmedinfo.com/blo ··· t?page=2

ASD seems to be little evidence with 61 cumalative things which I thought was interesting as you mentioned.

I can sort of see why I see better reports on GFCF and Schizophrenia, Auto-immune diseases.

Name Cumulative Knowledge Article Count Focus Articles
Celiac Disease 1395 150 focus
Wheat Intolerance 402 29 focus
Gluten Sensitivity 380 35 focus
Gluten Intolerance 336 27 focus
Autoimmune Diseases 136 12 focus
Schizophrenia 111 7 focus
Food Allergies: Wheat 106 11 focus
Food Allergies 97 10 focus
Psoriasis 82 5 focus
Down Syndrome 80 5 focus
Diabetes Mellitus: Type 1 73 12 focus
Irritable Bowel Syndrome 71 4 focus
Diabetes Mellitus: Type 1: Prevention 70 8 focus
Celiac Disease: Diagnostic Considerations 63 7 focus
Autism Spectrum Disorders 61 5 focus

A link between IBD and ASD would be very very interesting to me as well.

Have a good day

Gone
Premium Member
join:2011-01-24
Fort Erie, ON

Gone

Premium Member

I don't buy into the whole gluten argument for two reasons - first, ASD symtoms present themselves before a child is on a gluten-heavy diet, and secondly - based on personal experience - a mis-diagnosis of Celiac Disease and a complete elimination of gluten from my diet did not stop what ultimately turned out to be Crohn's Disease from continuing to run rampant.

I believe there are some people who put way too much into the "Gluten Agenda" while either ignoring or dismissing other more pragmatic and medically accepted ways to control these illnesses.
deafmonkey
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deafmonkey

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Hello Gone,

I have noticed that there are people out there who do put too much into the gluten agenda and see why you're like you are which is fine with me as I said I did not see many positive reports on this and ASD mostly all mixed. So I see your logic on how ASD presents themselves before a gluten-heavy diet.

Sorry to hear about your Crohn's Disease, I did help some on another forum with their special SCDiet which seems to help them but now they found a medication that seems to work OK for them that they eventually went off the diet, Though they did tell me that it worked well for them.

I know I would never want that diet, That is a lot of work in itself, I thought Paleo-Autoimmune/Leukodystrophy(Refsum Disease) was complex until I checked out SCDiet.

I do however believe that diet thought not always GFCF(I use the GFCF as the cheapest option compared to Paleo-Autoimmune when I'm not well I use a modified Paleo-Autoimmune) can still make a difference in some who have compromised illness in Myasthenia Gravis, Chiari Malformation, Leukodystrophy, Celiac Disease, and possibly SCDiet for Crohn's based upon some others on their reports to name a few.

However for ASD as you pointed out needs more research.

I'm curious if you ever tried the SCDiet yourself.

Have a good day