Nuerological symptoms relieved by diet

[Marciab]

Hi folks,

I came here looking for an explanation as to why my neurological symptoms have vanished and I believe I found it. But, it was tucked away deep into the Gluten sensitivity forum.

As of September 2006, I started walking normally all of the time (ataxia) and I no longer have othorstatic hypotension.

Back in August 2006, I was able to eliminate Klonopin (seizure med) for myoclonus. The change started back in April, but it took me awhile to withdraw from Klonopin.

From what I have read this "miraculous recovery" (:confused: ) is due to the fact that I eliminated gluten.

http://jnnp.bmj.com/cgi/content/full/72/5/560

My question is "Can this board put this info up front so that others coming here will see it right away ? "

I have been to many nuerologists (including the Mayo Clinic) and no one tested me for celiac or gluten sensitivity. If you have been to the Mayo Clinic, you know I was tested for everything else though.

I would have never found out about gluten/celiac if my digestive system had not simply stopped working and my GP had not put me on the elimination diet.

Even my GP, whom I think very highly of, did not think I was a celiac. I left her shaking her head on our last visit.:D

The NIH released a study back in 2004 designed to educate the medical profession, but not many have taken note.

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

Notice in this article, you do not have to have any digestive symptoms to have celiac or gluten intolerance.

I hope you will consider my suggestion. Thanks ... marcia

Oh, and please chime in if you have had a similar experience.

[annelb]

Hi Marcia, I am so happy that you found that a GF life gives you better health. When gluten is the problem, it is like a miracle. I have been gluten free for three years and have a long list of symptoms that either vanished or vastly improved. My main symptoms were fatigue, depression and peripheral neuropathy. Other symptoms were dry skin, eyes and mouth, headaches, GERD, joint pain and more. My doctor's diagnosis before I went GF was "you are old" - I was 60 at that time. I now feel younger than I have in many years.

Those of us who have found that we are gluten sensitive often post pertinent articles and personal experience on other forums. GS/CD has about 250 symptoms and is associated with all the autoimmune diseases. It can be linked to arthritis, heart disease, infertility, depression and other psychological disorders. There is some thought that it can cause other autoimmune diseases. There is evidence that a gluten free and casein free diet help with autistic spectrum disorder.

Here is the link to the Gluten Sensitivity/Celiac Disease forum here on BT http://brain.hastypastry.net/forums/forumdisplay.php?f=152

For anyone interested in learning about the ins and outs of diagnosis, symptoms and associated diseases go to The Gluten File http://jccglutenfree.googlepages.com/home
Anne

[The_One]

There have been studies showing as many as 1 in 130 people may be celiac and as many as 1 in 10 may be gluten sensitive! With all this information, I can't believe doctors are SO reclutant to take us seriously when we tell them we think we are gluten sensitive. I know because I have talked to many doctors and even the best one [who told me my neurological symptoms may be linked to something genetic, finally!] was very hesitant when I said the word celiac...

I think doctors need to see that Gluten is causing chaos! they need to open their mind to the possibility that many, many diseases are being cuased by gluten sensitivity, even a simple thing as ashtma, or a kid who behaves badly, or one that doesnt seem to be good in school... hopefully in the future everyone will be tested for gluten sensitivity and we will finally realize how bad those grains are being to our body...

I am glad you have been feeling better, in the two weeks I went almost completely gluten free I noticed a drastic change, in my mood, in my stomach symptoms, not to mention I wasnt trowing up or even nauseous anymore and even in my neuropathy [for which now i have to take medication after starting on gluten again].

[Marciab]

Anne,

Thanks for replying. I can't believe your doctor. Geesh !!!

I saw the info in the gluten sensitivity section, but was actually trying to help people see that their myoclonus or ataxia could be from gluten.

I would have never paid attention to info about gluten sensitivity / celiac if I had not seen a dramatic change from just removing wheat from my diet.

My doctors had me convinced that my nuerological problems were from CFIDS.

Do you have any ideas on how to make this info easier to find ?

Marcia

[Marciab]

The One

Glad to hear you are feeling better too.

I am confused as to how the medical profession can be so clueless about celiac / gluten sensitivity too.

I thought the NIH would be responsible for educating doctors about something like this. The CDC sure let everyone know about bird flu .... or was that the press ?

marcia

[jcc]

Anne,

Thanks for replying. I can't believe your doctor. Geesh !!!

I saw the info in the gluten sensitivity section, but was actually trying to help people see that their myoclonus or ataxia could be from gluten.

I would have never paid attention to info about gluten sensitivity / celiac if I had not seen a dramatic change from just removing wheat from my diet.

My doctors had me convinced that my nuerological problems were from CFIDS.

Do you have any ideas on how to make this info easier to find ?

Marcia

Hi Everyone...just found this post while googling around actually.

Hi Marcia. A few of us have tried to get this word out... in fact just opening a gluten sensitivity forum on a neurology board was a HUGE first step! Last I counted, this information should be posted on about 20 different forums here, if not more. At one time, I did have links and info in the useful websites of many of the various forums (including ataxia, pn, epilepsy, ms, cfs, fibromyalgia, MG, Diabetes, and more)...before we lost everything to a giant crash last summer. I also posted about it a lot... in fact, to the point of people being annoyed by it... so I cut back :o.

The other part of the story is that most doctors only recognize biopsy proven celiac disease...when in fact, a more cryptic gluten sensitivity can cause neurological and other symptoms. So... it is an uphill battle, but thanks to the research of some amazing people...like Dr. Marios Hadjivassiliou... this is all slowly coming to be accepted.

Well, it is nice to meet another crusader. Perhaps we will have to make a concerted efforted to get a post out in every forum that might benefit... I've been a little distracted lately, but I agree with you and others this words needs OUT!! Would you believe four years ago I tried to get it into an Epilepsy Foudnation newsletter and was rejected because they said the connection was weak? ARGHH!!!

It is tragic that anyone should suffer from neurologic disease that might be preventable or reversed with dietary changes. I could say the same about vitamin deficiency and neurologic disease...especially vitamin B12.


Cara

[Marciab]

Cara,

Thanks for replying. I feel your frustration. I joined the Daily strength epilepsy group and we move board to tell them about celiac.

The Daily strength board is a combination of different illnesses so I thought that would be a good place to get the word out. I was already on their celiac board, but not very active ... Who has time for all this ??? (Insert googly eyes here )

I was already a member of celiac.com and the immunesupport board. Both have helped me tremendously in healing ...

I just hate the thought of anyone going through what I did ... MRIs, EMGs, sarcastic doctors ... 16 years of not being able to walk any distance ...

I understand the View is having a segment on celiac next week. I am going to email them to see if they will be discussing the nuerological side of celiac too. Perhaps you would like to email them too.

Any ideas you have would be appreciated. Marcia

ok, I just saw on celiac.com where the view will have a segment on celiac on friday not next week ....

[WINGLETTS]

I just had some brain surgery, by angiogram so having problems with seeing in some ways....and still headaches...from coil and stents...

On this gluten your talking about....I had gall bladder surgery in 2005 then after surgery a biliary leakage...wow what a year.. I have and stay bloated all the times. and have trouble having full bowel movements....now just got diagnosed with brain aneursym in 2006 ,,help with diet someone....

your friend in deed
Linda

[annelb]

Hi Linda, sounds like you have been through a lot and sorry you are not feeling well.

As far as gluten being a problem, it is possible. Some doctors believe that gluten affects the health of up to 30% of the population although only 1% have celiac disease.

Please visit the gluten sensitivity/celiac disease forum here on BT http://brain.hastypastry.net/forums/forumdisplay.php?f=152

Also, have you checked out the aneurysm forum http://brain.hastypastry.net/forums/forumdisplay.php?f=85
Anne

[jd3]

Marciab,

I am glad for the improvement in your health:) . Also thank you very much for your post. There is a growing recognition of gluten sensetivity. It would be pretty easy to try a gluten free diet. In my case, PN and depression, what can I lose?

[Marciab]

This diet is definitely a change from the Standard American Diet (SAD), but that is a good thing :)

At this point, I am eating mostly whole foods. Fruits, veggies, meats, raw nuts and seeds. It's just easier for me to avoid gluten this way. And I am enjoying it :D I have been eating fresh oysters, clams and tuna this week. I'm always finding something new to try.

Some companies that are completely gluten free facilities are Pamela's, Kinnikinnick, Ener G and Enjoy Life.

All foods that have a possibility of cross contamination are out for me. I am extremely sensitive and will have seizures again if I eat the slightest amount of gluten. I wonder if this is true for all those with nuerological problems ???

Hope this helps someone ... Marcia

[annelb]

Marciab,

I am glad for the improvement in your health:) . Also thank you very much for your post. There is a growing recognition of gluten sensetivity. It would be pretty easy to try a gluten free diet. In my case, PN and depression, what can I lose?

Hi, Have you checked out The Gluten File? http://brain.hastypastry.net/forums/showthread.php?t=1062 There are sections about PN and depression being linked to gluten in some people. For me, my PN is so much less and my depression is gone since going GF.

The only problems with giving the GF diet a try is, if you do feel better and then decide you want tests for CD, you have to go back on a gluten containing diet. Testing for gluten sensitivity(not CD) can be done after you start on a GF diet through www.enterolab.com. This is a test for antibodies in the stool - these antibodies can be found before the blood becomes positive and remain for up to a year after starting a GF diet.

Jumping into the GF life is much more than not eating bread. GIG's Quick Start Diet Guide gives a good quick overview: http://www.gluten.net/downloads/infopackets/QuickStartDietGuide-2005.pdf

Please come visit us at the gluten sensitivity/celiac disease forum here on BT.
Anne

[Marciab]

I noticed I did not include in this thread the fact that I was already off wheat, dairy, soy, corn, eggs and all chemicals 2 months prior to getting the gluten out of my diet. My digestive system will not allow me eat these anymore.

I was convinced when I wrote this that gluten was the answer. But, since I was off these other foods too, there is really no way of telling. The research on other foods is on the web and should be taken into consideration if going 100% gluten free doesn't help.

At this point (7 months post withdrawal from Klonopin), I have noticed that I will have seizures, insomnia and nasty runs again if I eat any gluten whatsoever. So, I am still thinking this is it. However, I'm not interested in the cramps associated with testing dairy, soy, corn, etc. :eek: so it will be awhile before I intentionally ingest these.

Just wanted to make sure anyone reading this did not miss out on anything that might help them ... for me it may be gluten for you it may be dairy, etc ... :cool:

Best wishes on your recovery ... Marcia

[Marciab]

Hi again ...

I'm bumping this to the top in an effort to help others with nuerological problems of an unknown origin.

Hope this helps someone.

BTW. I am still walking and sleeping normally. It's been 9 months now ... :D

It turns out that I have the celiac DQ 2 gene.

Marcia

BTW You can be sensitive to gluten, dairy, etc and not have positive antibody results or biopsy or the gene. You really have to to take these foods out of your diet to see if they are causing problems.

[Buttons2]

I have myoclonus,don't recall ever reading about gluten & myoclonus before (but then there's alot of stuff I don't recall:rolleyes: )

I've been on a strict low-carb diet since June 1st due to my diabetes & fear of going blind with diabetic retinopathy. Just dawned on me that I've been pretty much gluten free during this time also.....I'm going to actually read the gluten file today & see what else I need to eliminate.

My myoclonus began not too long after I was diagnosed with type 2 diabetes. Many other issues with brain & body since that time (9yrs ago). Also high blood pressure,edema,arthritis,weight gain,too many to list right now.

I never took the Klonopin perscribed because I wanted a reason (diagnosis) for the myoclonus. Taking B12 helped me regain much of my brain skills & I also cut out 99% of aspartame from my diet. I never did get a diagnosis-just possible MS,Parkinson's,one neuro even thought possible Cruetzfeld-Jacobs disease.

As a diabetic I know very well how ignorant doctor's are about diet! In fact they are doing more harm than good when they make stupid suggestions like drink SlimFast for breakfast! Drink less water to help with edema. Stop taking any B vitamins cause my test for B12 was high,yada,yada.

I've had vast improvement on the myoclonic jerking,I gave up driving over 3 yrs ago because there were just too many triggers while moving in a vehicle....then out of the blue I had a very severe attack a few weeks ago,I wish I knew what I'd eaten that day cause now I can see there might be a possible link!

Thanks for bringing this back up,I often wonder where I'd be today without BT! I've got some reading to do......

Buttons

[annelb]

Hi Buttons, hope you do hop over to the Gluten Sensitivity/Celiac Disease forum and check things out. It amazes me as to how many symptoms and dis-eases are linked to diet.
Anne

[Buttons2]

I still haven't found the list of hidden gluten in foods,I only caught the soy sauce one so far. I will probably join the clan over on the gluten forum soon!

I do have some knowledge of it,and recall wishing I could control my son's diet,he was diagnosed schizophrenic when he was 19. He's now 39 and heading towards a meltdown in my opinion. What struck me was the messy stools in infants. He was my firstborn & I recall asking the doctor about possible food allergies.....he was on formula & baby food,the regular stuff everyone fed their kids back then. He also had his tonsils out & tubes in his ears. All this is coming back to me as I read the stories.....

I ate a few Triscuits yesterday @ lunch & wham! Hurting inside,I can now see that what I was afraid was GERD is eating wheat! So if nothing else comes of this I'll be very grateful to have that kind of pain disappear!

I'm basically living on salads. Eggs & veggies for breakfast. Since I'm diabetic I can't eat all the yummy recipes you guys have posted! I have not had even a bite of bread this entire month. Have now lost 9# which is such a good feeling! I now have hope to get the other 30# off.

I also was not aware of the link between gluten & thyroid problems. My thyroid tests have all come back OK even though I have many of the symptoms.

And it just occurred to me that my sinus problem isn't as severe even though it's high pollen time around here & I walk in the woods/long grass everyday! I haven't used one Allegra pill this month! Yippee!

Is there gluten in cheese?
Later,Buttons

[annelb]

Cheese is usually GF. Kraft is one company that will list gluten ingredients in plain English - won't hide them in statements such as "Natural flavorings". One trick to being GF is to read labels every time you buy an item as ingredients can change at any time. Some blue cheese and some processed cheese may be suspect.

Gluten Intolerance Group http://www.gluten.net/publications.htm has some nice printable brochures that can help one start on a GF diet.

I ate a few Triscuits yesterday @ lunch & wham! If we listen carefully, our bodies talk to us.

A diet for gluten sensitivity and diabetes is a challenge. I think if you stop over to the forum you will find that many of us avoid sugars. Here is a publication that may help.
http://www.gluten.net/downloads/PracticalGastro/KupperArticle.pdf
Anne

[Marciab]

I wanted to bump this and include the info on Autism and the GFCF diet + . Eliminating gluten or casein has proven to help quite a few people not just the kids with autism, but if you are still having problems, you may need to look at the other things the professionals are using for Autistic kids.

Here is the link to Jenny's and Holly's interview on Oprah about their success with their children on the GFCF diet + .

http://www.oprah.com/tows/pastshows/...20070918.jhtml

Here is an article about how gluten affects the brains of some autistic kids.

http://www.autismndi.com/news/displa...040721150 209

Immune response to dietary proteins, gliadin and cerebellar peptides in children with autism. Nutr Neurosci. 2004 Jun;7(3):151-61.

And here a study done by Dr. Hadjivassilou where he has proven that gluten can cause damage to the brain (gluten ataxia) without causing damage to the intestines. There are articles about other gluten / nuerological symptoms too though.

http://jnnp.bmj.com/cgi/content/full/72/5/560



There are plenty of sites that parents of Autistic kids who are using the DAN protocal or at least the GFCF protocal use.


Autism Research Institute - 'Leaky Gut' and the Gluten- / Casein-Free Diethttp://www.autism.com/families/diet/leakygut.htm

ANDI - Autism Network for Dietary Intervention http://www.autismndi.com/faq/default...=Dietary%20FAQ

Autisminfo.com http://www.autisminfo.com/diet.htm

Autism Web - The Truth About the Gluten-Free, Casein-Free Diet for Autism and PDD
http://www.autismweb.com/diet.htm

Talk About Curing Autism (TACA) - Gluten Free / Casein Free (GF CF) Dietery Intervention
http://www.tacanow.com/gfcf-diet/gfcfdietintro.htm

The Official GFCF Diet Support Group FREE Informative Website
Dietary Intervention Treatment For
Autistic Spectrum Disorders
http://www.gfcfdiet.com/


Good luck with all of this ... Marcia :)

PS. IMHO You really have to be diligent with this diet. No gluten ever for any reason. Even cross contamination from restaurants and foods prepared in a facility that also processes wheat will cause many of those sensitive to gluten to get sick. There are restaurants with GF menus that appear to understand, but I would check with the manager first. I got glutenned at Carrabba's ....

[Heidi L]

Since this got bumped up, thought I would mention that I am trying to get the medical establishment to recognize a few more neurological disorders that can be caused by gluten sensitivitly.

Sleep disorders including narcolepsy, movement disorders including Parkison's, and dementia with Lewy bodies.

I am in compete remission from narcolepsy and dementia and have now noticed muscle improvements that could have been the onset of PD.
My MIL is recovering from fibromyalgia on a GF diet and my SIL's restless leg has vanished.

Here's a link to my paper. I'm working on an updated, less technical version.
http://www.lindborglabs.com/Hypothesis.html

Believe me, eating gluten free is way better than being sick.

Heidi

[Marciab]

Heidi,

Great paper. I hope you are successful in getting the medical community to pay attention to this. It could save so many people from suffering with so many problems.

I had a question about recovering ...

You wrote:

The efficacy of current therapies may be improved, or neuroactive drugs might even be found to stimulate exocytosis or neurogenesis in damaged areas. Nonetheless, the mere possibility that the progressive nature of these diseases could be arrested and acute symptoms be alleviated is enough reason to test this hypothesis with targeted research.

Can you tell me what those current therapies are ? I'm too slow still on my speech comprehension. Either that or the newscasters are speaking a lot faster. ;)

Thanks ... Marcia

[Heidi L]

sorry, I forgot about this thread. Thanks for the compliment. I put up a new page with my story:
http://www.lindborglabs.com/AboutHeid.htm

Narcoleptics use a drug called Xyrem. Nobody knows how it really works, but I think it might stimulate exocytosis and clean out the nerve endings. I'm not sure about that, but it could be tested.

I think nicotine might do the same thing, actually. It can't be patented though, so nobody will test it.

There was a clinical study on a drug for PD called GDNF that showed promise with stimulating new neuron growth. It was cancelled though.

I have a new friend with PD and myoclonus. I need to point him your way...

[diane08502]

Hi, my name is Diane, I live in NJ. My son has myoclonic Epilepsy, he was diagnosed at 10 months old. I took him to a Pediatric GI specialist, because he had "REFLUX", well, he was put on Zantac when he was 3 months old, and that was only because I used my experience as an RN, and demanded it, with the old pediatrician. He started having seizures when he was about 6 months old. By the time we saw the Pediatric GI specialist, he was on Phenobarbital for 4 months, AND, miracle of miracles, his REFLUX disappeared. His blood tests were negative and his other symptoms, developmental delays, had also improved. He has occaisional constipation from the phenobarbital, which is a pleasant problem that I am happy to deal with INSTEAD of seizures. The pediatrician didnt think he needed a pediatric GI specialist, but, he was concerned about using the Zantac, and it didnt seem to help. ONe year ago, my son was flat on his back, vomiting all over, he was 8 months old, he coudnt sit. NOW, with 9 months of physical therapy, 10 months of phenobarbital, and 7 months in the NJ EIS (early intervetion system) he is able to walk!!! We did not change his diet because we did not think he had Celiac disease, but, nobody addressed it but the pediatric GI specialist. The pediatrician didnt bring it up, and, if my son needed a gluten free diet, I would gladly do that too. I also have a bladder problem, IC, which is very directly affected by what I eat. SO, mayber our grandmothers were right, You are what you eat???? I am glad that so many people are taking control of their lives by making changes like GF diets, the pharmaceutical companies wont encourage this, there no money in it for them. ANyway, I hope you all have a Happy and Safe Thanksgiving, Diane, Mom of JOe Joe, 20 months, myoclonic Epilepsy, External hydrocephalus, hearing loss at birth, single artery umbillical cord (oh yeah, that has nothing to do with anything, so I am told!!) and Developmental delays, but, not for long, cause he is figuring out how to be a TODDLER!!! Thank You God for answering our prayers!

[kwms]

I just returned from a conference a few weeks ago where Dr. Natasha Campbell-McBride spoke. She was one of several dozen speakers on all kinds of topic related to nutrition and health. She is a neurologist and her son was diagnosed with severe autism. She went back to school and got her PhD in nutrition and now runs a nutrition clinic in the UK. She completely healed her son's autism through diet. He is 12 now and in a regular mainstream school and doing fine, playing sports, has friends, etc.

Her talk was called the "Gut And Psychology Syndrome" or GAPS for short. She mentioned ADD, ADHD, Dyslexia, Dyspraxia, learning, behavioral and social problems in children being on the rise significantly and in adults - substance abuse, depression, OCD, manic deppressive, schizophrenia. She has seen all of these patients and she finds many symptoms that overlap: allergies, asthma, eczema, malnutrition, bed wetting, thrush, chronic cystitis, etc. The number one problem for all of these people is DIGESTIVE PROBLEMS.

"All diseases begin in teh gut" - Hypocrates

Because 84% of our immunity is located in the gut wall, this is where she focust her attention. If you took the lining of the gut and rolled it out flat, it would take up the area of a tennis court. It is that large. In fact 90% of the cells in the body are part of the digestive system. The gut flora are the bacteria that live inside your gut. Their roles are to protect from invaders, maintain the health and integrity of the gut, provide appropriate digestive and absorption, vitamin production, detoxification, and immune system modulation. With all the polluted air and water we encounter, our last defense is the gut flora.

GAPS patients have what's called Gut Dysbiosis or "leaky gut" They have reduced or absent populations of normal flora, candida species overgrowth, clostridia species, slphate reducing bacteria, viruses (measles, herpes, CMV, etc.)

In a typical scenario this is what her GAPS patients present: Mother has gut dysbiosis (what the child swallows in the birth canal becomes the baby's gut flora, so if the mother has an imbalance it is very likely the child will too - but this is good news, because it means the condition is reversible, not genetic!), the baby doesn't develop normal gut flora, his/her immune system is compromised, many ear infections (the cause for 80% of doctor visits) with frequent antibiotics treatments, chest infections, also with frequent antibiotic treatments (antibiotics kill both the bad bacteria and the good, healthy bacteria in the gut, upsetting the normal balance), vaccinations - she doesn't feel these are a direct cause but seem to become a "last straw" in these cases where the gut flora is on the tipping point, the usual weaning diet (grains as baby's first food), gut dysbiosis, toxicity, brain disfunction

Key Treatments for re-establishment of normal gut flora:
* diet (based on the Specific Carbohydrate Diet)
* an effective probiotic - NOT prophylactic
* address the nutritional deficiencies
* detoxification

She also advocates for supplementation with cod liver oil for Vitamin A. (Green Pastures is an excellent brand) and Essential Fatty Acids (omega-3, omega-6, omega-9). Instead of multi-vitamins, minerals and amino acids, she recommends fixing the diet instead because the absorption rate of most supplements is 9%. Detoxification with juicing, baths w/ epsom salt and avoiding toxins as much as possible is recommended.

Your gut lining is always renewing itself, but it will take about 2 years to completely renew the entire gut wall.
During this 2 year period these foods should be avoided:
*all grains
* starchy vegetables (winter squash are ok to eat)
* sugar, other commercial sweeteners
* milk (and milk sugar lactose)
* starchy beans including soy (white navy beans are ok to eat)
* all processed foods
* all food additives

Recommended foods for this 2 year period are:
* all meat - fresh or frozen
* all fish - fresh or frozen
* organ meats (liver, kidneys, etc)
* good quality eggs from pastured chickens
* non-starch vegetables
* all ripe fruits including dried fruits - important here to get local fruits because our produce travels an average of 1500 miles to the stores and so it is picked very unripe and then ripened during its journey, meaning the consumer doesn't get the full benefit of the nutritional value of the fruit at the peak of ripeness. If you can, find a local grower and buy directly from him, picking the choicest fruit. She said, you don't want the apple on the tree, you want the one on the ground. It is ripe if it fell to the ground. And if it has a worm in it, even better! (meaning the worm selected that apple as a nutritious one, so it would be nutritious for you to, just cut off the part where the worm is)
* nuts and seeds
* fermented dairy
* cold extracted honey
* natural fats - all animal fats, butter & ghee, coconut & palm oil, cold-pressed virgin olive oil
* AVOID ALL margarines, butter replacements, vegetable oils and cooking oils!

For breads, pies, cakes, muffins, pancakes, waffles, etc:
* use nut flours or seed flours (coconut and almond flour are good examples)
* eggs
* butter, ghee, coconut oil, goose fat, duck fat
* use carrots, winter squash, marrow or zucchini
* for sweetness use dried fruits: dates, figs, apricots, raisins
* really ripe bananas - black looking that are being thrown out at the store
* celtic sea salt, sun-dried tomato, tomato puree, spices
* cheese and fermented cream

Meats and fish stocks - THIS SHE SAYS IS A MUST! (provides lots of minerals)
* homemade meat and fish stock
* soups and stews made w/ the stock
* meat jelly made at home
* bone marrow
* joints & cartilage
* natural gelatine
AVOID commercial boullion cubes or granules!

After the 2 year period you can slowly add dairy back in small steps. Introduce each item with very small bits and check for a reaction before moving on. If there is a reaction, stop the person is not ready, continue to heal and try later. Adding dairy back should take around 18 mos to complete.
Step 1 - introduce organic unsalted ghee
Step 2 - introduce organic unsalted butter
Step 3 - introduce kefir, yogurt and fermented cream
Step 4 - introduce homemade cheese
Step 5 - introduce mature traditional cheese
Step 6 - introduce double cream and clotted cream
AVOID ALL PASTEURIZED MILK AND MILK SUBSTITUTES!

Fermented Foods
* saurkraut - traditionally lacto-fermented
* fermented vegetables w/ kefir starter
* fermented fish w/ kefir starter or whey
* fermented dairy
* homemade vinegar

Low fiber diet for diarrhea
* no raw foods, no fruit, no nuts, no seeds
* feed homemade meat stock
* feed meat and fish well cooked in water
* soups and stews w/ vegetables & meats
* well cooked vegetables
* eggs
* homemade kefir, yogurt, cheese
* fermented vegetables

Natural chelation
* freshly pressed vegetables & fruit juices
* probiotics
* fermented foods
* sea greens
* humic acids: fulvic acid, humet, etc.
* spirulina & algae
* NDF (nano-collodial Detox Factor)

The above is all from my hand-written notes at her talk. I am expecting to get an MP3 of the whole seminar. If you'd like a copy, post a reply and I will check this board when it comes in.

For a copy of Dr. Campbell-McBride's book or the probiotic she's formulated, you can check this distributor's website: www.guthealth.info

Also there are some videos featuring Dr. Campbell-McBride and Donna Gates (of the Body Ecology Diet) on YouTube. She covers most of what is listed above: http://www.youtube.com/watch?v=Zpe4kcvaesw

[kwms]

I just returned from a conference a few weeks ago where Dr. Natasha Campbell-McBride spoke. She was one of several dozen speakers on all kinds of topic related to nutrition and health. She is a neurologist and her son was diagnosed with severe autism. She went back to school and got her PhD in nutrition and now runs a nutrition clinic in the UK. She completely healed her son's autism through diet. He is 12 now and in a regular mainstream school and doing fine, playing sports, has friends, etc.

Her talk was called the "Gut And Psychology Syndrome" or GAPS for short. She mentioned ADD, ADHD, Dyslexia, Dyspraxia, learning, behavioral and social problems in children being on the rise significantly and in adults - substance abuse, depression, OCD, manic deppressive, schizophrenia. She has seen all of these patients and she finds many symptoms that overlap: allergies, asthma, eczema, malnutrition, bed wetting, thrush, chronic cystitis, etc. The number one problem for all of these people is DIGESTIVE PROBLEMS.

"All diseases begin in teh gut" - Hypocrates

Because 84% of our immunity is located in the gut wall, this is where she focust her attention. If you took the lining of the gut and rolled it out flat, it would take up the area of a tennis court. It is that large. In fact 90% of the cells in the body are part of the digestive system. The gut flora are the bacteria that live inside your gut. Their roles are to protect from invaders, maintain the health and integrity of the gut, provide appropriate digestive and absorption, vitamin production, detoxification, and immune system modulation. With all the polluted air and water we encounter, our last defense is the gut flora.

GAPS patients have what's called Gut Dysbiosis or "leaky gut" They have reduced or absent populations of normal flora, candida species overgrowth, clostridia species, slphate reducing bacteria, viruses (measles, herpes, CMV, etc.)

In a typical scenario this is what her GAPS patients present: Mother has gut dysbiosis (what the child swallows in the birth canal becomes the baby's gut flora, so if the mother has an imbalance it is very likely the child will too - but this is good news, because it means the condition is reversible, not genetic!), the baby doesn't develop normal gut flora, his/her immune system is compromised, many ear infections (the cause for 80% of doctor visits) with frequent antibiotics treatments, chest infections, also with frequent antibiotic treatments (antibiotics kill both the bad bacteria and the good, healthy bacteria in the gut, upsetting the normal balance), vaccinations - she doesn't feel these are a direct cause but seem to become a "last straw" in these cases where the gut flora is on the tipping point, the usual weaning diet (grains as baby's first food), gut dysbiosis, toxicity, brain disfunction

Key Treatments for re-establishment of normal gut flora:
* diet (based on the Specific Carbohydrate Diet)
* an effective probiotic - NOT prophylactic
* address the nutritional deficiencies
* detoxification

She also advocates for supplementation with cod liver oil for Vitamin A. (Green Pastures is an excellent brand) and Essential Fatty Acids (omega-3, omega-6, omega-9). Instead of multi-vitamins, minerals and amino acids, she recommends fixing the diet instead because the absorption rate of most supplements is 9%. Detoxification with juicing, baths w/ epsom salt and avoiding toxins as much as possible is recommended.

Your gut lining is always renewing itself, but it will take about 2 years to completely renew the entire gut wall.
During this 2 year period these foods should be avoided:
*all grains
* starchy vegetables (winter squash are ok to eat)
* sugar, other commercial sweeteners
* milk (and milk sugar lactose)
* starchy beans including soy (white navy beans are ok to eat)
* all processed foods
* all food additives

Recommended foods for this 2 year period are:
* all meat - fresh or frozen
* all fish - fresh or frozen
* organ meats (liver, kidneys, etc)
* good quality eggs from pastured chickens
* non-starch vegetables
* all ripe fruits including dried fruits - important here to get local fruits because our produce travels an average of 1500 miles to the stores and so it is picked very unripe and then ripened during its journey, meaning the consumer doesn't get the full benefit of the nutritional value of the fruit at the peak of ripeness. If you can, find a local grower and buy directly from him, picking the choicest fruit. She said, you don't want the apple on the tree, you want the one on the ground. It is ripe if it fell to the ground. And if it has a worm in it, even better! (meaning the worm selected that apple as a nutritious one, so it would be nutritious for you to, just cut off the part where the worm is)
* nuts and seeds
* fermented dairy
* cold extracted honey
* natural fats - all animal fats, butter & ghee, coconut & palm oil, cold-pressed virgin olive oil
* AVOID ALL margarines, butter replacements, vegetable oils and cooking oils!

For breads, pies, cakes, muffins, pancakes, waffles, etc:
* use nut flours or seed flours (coconut and almond flour are good examples)
* eggs
* butter, ghee, coconut oil, goose fat, duck fat
* use carrots, winter squash, marrow or zucchini
* for sweetness use dried fruits: dates, figs, apricots, raisins
* really ripe bananas - black looking that are being thrown out at the store
* celtic sea salt, sun-dried tomato, tomato puree, spices
* cheese and fermented cream

Meats and fish stocks - THIS SHE SAYS IS A MUST! (provides lots of minerals)
* homemade meat and fish stock
* soups and stews made w/ the stock
* meat jelly made at home
* bone marrow
* joints & cartilage
* natural gelatine
AVOID commercial boullion cubes or granules!

After the 2 year period you can slowly add dairy back in small steps. Introduce each item with very small bits and check for a reaction before moving on. If there is a reaction, stop the person is not ready, continue to heal and try later. Adding dairy back should take around 18 mos to complete.
Step 1 - introduce organic unsalted ghee
Step 2 - introduce organic unsalted butter
Step 3 - introduce kefir, yogurt and fermented cream
Step 4 - introduce homemade cheese
Step 5 - introduce mature traditional cheese
Step 6 - introduce double cream and clotted cream
AVOID ALL PASTEURIZED MILK AND MILK SUBSTITUTES!

Fermented Foods
* saurkraut - traditionally lacto-fermented
* fermented vegetables w/ kefir starter
* fermented fish w/ kefir starter or whey
* fermented dairy
* homemade vinegar

Low fiber diet for diarrhea
* no raw foods, no fruit, no nuts, no seeds
* feed homemade meat stock
* feed meat and fish well cooked in water
* soups and stews w/ vegetables & meats
* well cooked vegetables
* eggs
* homemade kefir, yogurt, cheese
* fermented vegetables

Natural chelation
* freshly pressed vegetables & fruit juices
* probiotics
* fermented foods
* sea greens
* humic acids: fulvic acid, humet, etc.
* spirulina & algae
* NDF (nano-collodial Detox Factor)

The above is all from my hand-written notes at her talk. I am expecting to get an MP3 of the whole seminar. If you'd like a copy, post a reply and I will check this board when it comes in.

For a copy of Dr. Campbell-McBride's book or the probiotic she's formulated, you can check this distributor's website: www.guthealth.info

Also there are some videos featuring Dr. Campbell-McBride and Donna Gates (of the Body Ecology Diet) on YouTube. She covers most of what is listed above: http://www.youtube.com/watch?v=Zpe4kcvaesw "The cure for autism and mental illness - part 1"

[Marciab]

Hi, my name is Diane, I live in NJ. My son has myoclonic Epilepsy, he was diagnosed at 10 months old. I took him to a Pediatric GI specialist, because he had "REFLUX", well, he was put on Zantac when he was 3 months old, and that was only because I used my experience as an RN, and demanded it, with the old pediatrician. He started having seizures when he was about 6 months old. By the time we saw the Pediatric GI specialist, he was on Phenobarbital for 4 months, AND, miracle of miracles, his REFLUX disappeared. His blood tests were negative and his other symptoms, developmental delays, had also improved. He has occaisional constipation from the phenobarbital, which is a pleasant problem that I am happy to deal with INSTEAD of seizures. The pediatrician didnt think he needed a pediatric GI specialist, but, he was concerned about using the Zantac, and it didnt seem to help. ONe year ago, my son was flat on his back, vomiting all over, he was 8 months old, he coudnt sit. NOW, with 9 months of physical therapy, 10 months of phenobarbital, and 7 months in the NJ EIS (early intervetion system) he is able to walk!!! We did not change his diet because we did not think he had Celiac disease, but, nobody addressed it but the pediatric GI specialist. The pediatrician didnt bring it up, and, if my son needed a gluten free diet, I would gladly do that too. I also have a bladder problem, IC, which is very directly affected by what I eat. SO, mayber our grandmothers were right, You are what you eat???? I am glad that so many people are taking control of their lives by making changes like GF diets, the pharmaceutical companies wont encourage this, there no money in it for them. ANyway, I hope you all have a Happy and Safe Thanksgiving, Diane, Mom of JOe Joe, 20 months, myoclonic Epilepsy, External hydrocephalus, hearing loss at birth, single artery umbillical cord (oh yeah, that has nothing to do with anything, so I am told!!) and Developmental delays, but, not for long, cause he is figuring out how to be a TODDLER!!! Thank You God for answering our prayers!

Diane,

Sorry it took me so long to reply. I hope you are trying the GF + diet for your son. I'm not up on what to look for in children, but others on the Gluten Sensitivity section here will be. Since you know you react to foods, there's a good probability that your son is too.

Enjoy the toddling ... My youngest is in college now ...

Marcia

[Marciab]

Thanks for posting this. I've seen other info like this on the web too.




"All diseases begin in teh gut" - Hypocrates

Because 84% of our immunity is located in the gut wall, this is where she focust her attention. If you took the lining of the gut and rolled it out flat, it would take up the area of a tennis court. It is that large. In fact 90% of the cells in the body are part of the digestive system. The gut flora are the bacteria that live inside your gut. Their roles are to protect from invaders, maintain the health and integrity of the gut, provide appropriate digestive and absorption, vitamin production, detoxification, and immune system modulation. With all the polluted air and water we encounter, our last defense is the gut flora.

GAPS patients have what's called Gut Dysbiosis or "leaky gut" They have reduced or absent populations of normal flora, candida species overgrowth, clostridia species, slphate reducing bacteria, viruses (measles, herpes, CMV, etc.)

In a typical scenario this is what her GAPS patients present: Mother has gut dysbiosis (what the child swallows in the birth canal becomes the baby's gut flora, so if the mother has an imbalance it is very likely the child will too - but this is good news, because it means the condition is reversible, not genetic!), the baby doesn't develop normal gut flora, his/her immune system is compromised, many ear infections (the cause for 80% of doctor visits) with frequent antibiotics treatments, chest infections, also with frequent antibiotic treatments (antibiotics kill both the bad bacteria and the good, healthy bacteria in the gut, upsetting the normal balance), vaccinations - she doesn't feel these are a direct cause but seem to become a "last straw" in these cases where the gut flora is on the tipping point, the usual weaning diet (grains as baby's first food), gut dysbiosis, toxicity, brain disfunction


More and more I see others agreeing with what this doctor is saying. It'd sure be great if treating our guts became the first treatment our doctors looked at.




Key Treatments for re-establishment of normal gut flora:
* diet (based on the Specific Carbohydrate Diet)
* an effective probiotic - NOT prophylactic
* address the nutritional deficiencies
* detoxification

She also advocates for supplementation with cod liver oil for Vitamin A. (Green Pastures is an excellent brand) and Essential Fatty Acids (omega-3, omega-6, omega-9). Instead of multi-vitamins, minerals and amino acids, she recommends fixing the diet instead because the absorption rate of most supplements is 9%. Detoxification with juicing, baths w/ epsom salt and avoiding toxins as much as possible is recommended.

Your gut lining is always renewing itself, but it will take about 2 years to completely renew the entire gut wall.
During this 2 year period these foods should be avoided:
*all grains
* starchy vegetables (winter squash are ok to eat)
* sugar, other commercial sweeteners
* milk (and milk sugar lactose)
* starchy beans including soy (white navy beans are ok to eat)
* all processed foods
* all food additives

Recommended foods for this 2 year period are:
* all meat - fresh or frozen
* all fish - fresh or frozen
* organ meats (liver, kidneys, etc)
* good quality eggs from pastured chickens
* non-starch vegetables
* all ripe fruits including dried fruits - important here to get local fruits because our produce travels an average of 1500 miles to the stores and so it is picked very unripe and then ripened during its journey, meaning the consumer doesn't get the full benefit of the nutritional value of the fruit at the peak of ripeness. If you can, find a local grower and buy directly from him, picking the choicest fruit. She said, you don't want the apple on the tree, you want the one on the ground. It is ripe if it fell to the ground. And if it has a worm in it, even better! (meaning the worm selected that apple as a nutritious one, so it would be nutritious for you to, just cut off the part where the worm is)
* nuts and seeds
* fermented dairy
* cold extracted honey
* natural fats - all animal fats, butter & ghee, coconut & palm oil, cold-pressed virgin olive oil
* AVOID ALL margarines, butter replacements, vegetable oils and cooking oils!

For breads, pies, cakes, muffins, pancakes, waffles, etc:
* use nut flours or seed flours (coconut and almond flour are good examples)
* eggs
* butter, ghee, coconut oil, goose fat, duck fat
* use carrots, winter squash, marrow or zucchini
* for sweetness use dried fruits: dates, figs, apricots, raisins
* really ripe bananas - black looking that are being thrown out at the store
* celtic sea salt, sun-dried tomato, tomato puree, spices
* cheese and fermented cream

Meats and fish stocks - THIS SHE SAYS IS A MUST! (provides lots of minerals)
* homemade meat and fish stock
* soups and stews made w/ the stock
* meat jelly made at home
* bone marrow
* joints & cartilage
* natural gelatine
AVOID commercial boullion cubes or granules!

After the 2 year period you can slowly add dairy back in small steps. Introduce each item with very small bits and check for a reaction before moving on. If there is a reaction, stop the person is not ready, continue to heal and try later. Adding dairy back should take around 18 mos to complete.
Step 1 - introduce organic unsalted ghee
Step 2 - introduce organic unsalted butter
Step 3 - introduce kefir, yogurt and fermented cream
Step 4 - introduce homemade cheese
Step 5 - introduce mature traditional cheese
Step 6 - introduce double cream and clotted cream
AVOID ALL PASTEURIZED MILK AND MILK SUBSTITUTES!

Fermented Foods
* saurkraut - traditionally lacto-fermented
* fermented vegetables w/ kefir starter
* fermented fish w/ kefir starter or whey
* fermented dairy
* homemade vinegar

Low fiber diet for diarrhea
* no raw foods, no fruit, no nuts, no seeds
* feed homemade meat stock
* feed meat and fish well cooked in water
* soups and stews w/ vegetables & meats
* well cooked vegetables
* eggs
* homemade kefir, yogurt, cheese
* fermented vegetables

Natural chelation
* freshly pressed vegetables & fruit juices
* probiotics
* fermented foods
* sea greens
* humic acids: fulvic acid, humet, etc.
* spirulina & algae
* NDF (nano-collodial Detox Factor)

The above is all from my hand-written notes at her talk. I am expecting to get an MP3 of the whole seminar. If you'd like a copy, post a reply and I will check this board when it comes in.

For a copy of Dr. Campbell-McBride's book or the probiotic she's formulated, you can check this distributor's website: www.guthealth.info

Also there are some videos featuring Dr. Campbell-McBride and Donna Gates (of the Body Ecology Diet) on YouTube. She covers most of what is listed above: http://www.youtube.com/watch?v=Zpe4kcvaesw


This is good advice, but I'd recommend starting out with a low carb diet that is just meats, fruits, veggies, nuts and seeds. Add probiotics, a good digestive enzyme and healthy fats like EVOO, grapeseed oil, flax, etc to your diet. This will start healing the digestive tract.

Marcia

[Marciab]

Bumping this for the newbies. There's some great info in this from some very helpful people. :)

BTW, I'm still improving albeit slowly. Healing is a marathon for me, but it could just be a sprint for you. We're all different.

Since posting the last time, I've noticed an improvement with my chronic hypoglycemia by going on the Paleo diet. My GTT as of April 2008 shows that I'm no longer hypoglycemic, but I still feel better if I eat every 2 - 3 hours.

http://www.naturalnews.com/022215.html


On May 1st, I started experimenting with step 1 of the John Hopkins protocal for OI/NMH. I noticed within the first day or so that my muslces didn't feel weak anymore when I vacuumed. I went from having to take long rest periods after 5 minutes of vacuuming to vacuuming the whole LR/DR/K in 15 minutes ... :D

http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm

Originally when I posted this, I thought the feeling like the floor was moving out from under my feet was OI/NMH. Did I mention I'm a patient not a doctor ??!! :p

HTH ... Marcia

[RTFlynn]

On a related note (but not celiac specific), there is some studies that show MS, and other auto-immune conditions, as being related to dairy. With that in mind, Colin Campbell's (Cornell U. prof and long time nutrition researcher), The China Study, is an interesting read.

[Marciab]

Hi again.

I wanted to bring you up to date on some treatments I've found that have helped me and might help you too ...

And if you haven't already, I'd read the rest of this thread. I've found it to be right on target whether you are trying to heal from a chronic condition or new one. I find it helpful to read various websites when researching health conditions. I'd recommend reading anything on the Paleo, low carb or low glycemic diet. Besides that be sure to take a look at what toxins could be causing your symptoms. This could be gluten or dairy or corn or msg or pesticides or or or ... To get started I'd eliminate the common food allergens and then anything you know makes you feel sick. That doesn't include teenagers .. : )

For me, zero gluten is imperative ... But

I've discovered DPP-IV which is a digestive enzyme for gluten and dairy. If you google this you'll find that it is being used by some in the celiac and autism communities to counteract the effects of being cross contaminated with gluten or dairy. And while this doesn't appear to work for everyone, I've noticed a difference. This should only be used when gluten can't be avoided. It's not meant to be a substitute for a GF diet. FWIW. Beware of those products labelled gluten free. They can have 20 ppm and still be considered gf. I have the feeling these are nailing me ...

And for anyone with orthostatic intolerance (OI), while I'm still benefitting from salt loading (Himalayan salt), I've also added alkaline water (eVAMOR) to my regime to help avoid post exertional malaise (PEM). That's the tired feeling those of us with CFS get for days after excercising and is linked to OI. At this point, I'm down to one day of rest, if any, after a day of activity ... I was at 2 - 3 days of PEM when I last posted. :D knock on wood ... I'm also in PT for OI which appears to be helping too. Anyone can benefit from alkaline water though. Just don't drink it with your meds or supplements or with a meal. It can interact with those ...

I'm not sure what role the Paleo / low oxalate diet is playing in this latest improvement, but I still feel better when I follow it.

hth ... marcia