Any Adults try GFCF?

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But see, that's huge! I'm a migraine sufferer and I don't know if I have IBS, but when I'm in pain I usually can't even tell. SO I get anti-social and mean because stuff _hurts_, I just can't physically feel the sensation of pain anymore. Taking the pain away is usually the only way I realize that dull ache on the edge of my consciousness was actually a huge deal--and then pretty soon I'm not such a beast to be around. The question is, are the gut issues and sensory issues part of the ASD? I think they are and in that sense they "help", but no...it doesn't fix the wiring, just makes it easier to cope.

Soy and dairy are very similar in how they function and protein wise. I honestly think the only way to see if it will work is to try it as everyone is unique in terms of how they process certain proteins. It's not as hard as it used to be the numerous GFCF toddlers mean there are several different GFCF foods that actually taste good. GFCF cinnamon chex, corn chex, corn pasta, Udi's bread/muffins.

I don't pay attention to what I consider to be "fad diets", or in some cases fad panics. I go with moderation in all foods. No alcohol or fried foods, rarely any dessert, and no soda pop though. I do eat most other things in moderation; gluten included. It can't be that bad, as I'm 43 now, have a sixpack, and can take my shirt off at the beach and make 19-year-olds envious... 185 lbs at 5.7% body fat, and in excellent physical shape; God willing.

Long story short, I question the motives of companies and people who put out these chemical scares about certain food and ingredients. No offense nor judgement intended toward the OP or others

Charles

Exclusionary diets including GFCF deprive the body of many nutrients, reduce the quality of life considerably and have no benefit except in people with a sensitivity. Imposing the GFCF diet on autistic children without medical need, which is a popular fad, is child abuse. A gastroenterologist can readily check your sensitivity, assess any inflammation and recommend useful exclusions and medication.

There is no consistent statistical link with autism (there are as many negative papers as there are positive).

(I have had severe inflammatory and IBS-type symptoms since teenage, every test under the sun and the only useful diet for me is moderation and balance).

Completely untrue.

Or are you suggesting that the Japanese and eastern Chinese peoples, among others, like the Inuit, and the Amerindians, Australian aborigines, etc were chronically deprived nutritionally on their casein-free and gluten-free diets before they began to eat wheat and dairy?

Gluten is "simply" the largest protein that we ever eat; it didn't even exist until the end of the last ice age, just 15,000 years ago. There is nothing irreplacable about it. In fact it is probably very bad for a great many people's health.

Not if the person is celiac or non-celiac gluten-intolerant.

Not if the person has the genes which are correlated with autism, ( see abstract quoted on previous page ), which make them extra susceptible to the effect that the food peptide opioids of gluten and casein have on gut permeability, exposing them to more food opioid peptides and other large molecules not intended to enter our bloodstream in that state.

Not if the person comes from a mainly northern and/or temperate climate background with the lower number of genes for salivary enzymes, ( both pancreatic and oral ), associated with that, and which is correlated with a greater difficulty digesting complex carbohydrates, ( from the dissaccharide sucrose to the polysaccharides like starches ) and/or if they are one of the almost 50% of the population sensitive to lectins.

Not if they have the Alzheimers gene AP03, most prevalent in races/peoples/societies which took longest to adopt agriculture, and which are associated with a difficulty in metabolising lipids/important fats in the presence of carbohydrates. ... In all these cases a gf diet is likely to improve someone's quality of life.


Agreed, but which of the above sensitivities or fragilities/susceptibilities do you mean? The one which makes autists more sensitive to the gut-opening signals of gluten and casein? Or "just" the 1-10% of the general population, including autists, who are either celiac/gluten-intolerant or have elevated levels of gliadin antibodies? It is a significant minority of the population, and more and more studies are describing the phenomenon of food intolerances, especially to gluten, as "an iceberg".


You say readily ... Have you tried following the procedure yourself? Did you know that the average length of time that it takes for someone with celiac disease/non-celiac gluten intolerance to receive a correct diagnosis is over 15 years? That is from a person's first attempts to deal with some health problem ( which turns out afterwards to have been celiac-or gluten-intolerance-related ) to receiving the diagnosis.

The situation is gradually improving, but many people still spend years trying one doctor after another, for one symptom or cluster of symptoms after another, often, after many different medical approaches, drugs, etc, being told that it is all in their mind, by which time their condition has advanced, and what was once, in the beginning, relatively minor illness/health problems has become massively disabling multi-organ damage with virtually irreversible neurological degeneration.

And despite studies showing that the latest popular test for gluten-intolerance, using amidated-gliadin, gives a lot of false negatives, a lot of doctors will use it first, or as if it were the only test, unless you ask for the other. Pharmaceuticals prefer doctors to use the one which gives a great many false negatives because that way they get to sell an awful lot more drugs, because the patient believes their doctor knows what s/he is talking about when they say that the test shows you are not gluten-intolerant, and recommends that they continue taking the pills.


That may be your experience, which is anecdotal, but mine and many others, also anecdotal, is that a gfcf diet helps, and it is our experience which is still not receiving the publicity that it needs to, to help the people who don't know what is wrong.

Pandorazmtbox; what you said about the pain, which you had been totally unaware of, but which had been poisoning your mood and undermining your functioning: that was exactly my experience.

The fourth day of my first ever gfcf exclusion diet I woke up feeling as if I had been living in a shopping mall, over a building site next to an airport, under a motorway, ... without even realising it ... and that suddenly, miraculously, wonderfully, the noise had stopped!

I cried, the relief was so enormous, the peace like drinking water after years in a desert. The most astonishing thing to me still is that I simply had no idea, I didn't realise, that my body and brain were under this sort of constant/chronic onslaught of chemical pressures/stress/"irritation"/inflammation, until it was gone.
.

It helps me feel better. It doesn't help the ASD.

Personally I think people claiming that it does help their ASD were just really ill from the gluten, and of course they're going to be able to function better when they're not consuming something that makes them ill.

Yes, I have. Over thirty years of dealing with chronic pain, inflammation, bleeding, etc, etc, I have come across an awful lot of quackery that is high on promise and short on delivery. I have tried many of the fads that have been and gone over that time (including GFCF) without benefit.

Eating well, in moderation and in balance (which the vast majority of people do not), and avoiding well-researched stressors like alcohol, caffeine and excessive animal fats is effective - many people have diets so appalling that GFCF is better, although neither gluten nor casein restriction is beneficial. Restricting diet so excessively as GFCF restricts the choice of food to the point of risking poor nutrition in a non-GFCF society, and restricts a great deal of social interaction and quality of life. It is an abuse when enforced unnecessarily on autistic children.

There is no science behind GFCF and no consistent findings showing a relationship with autism. For every study that GFCF advocates cherry-pick, there is another showing the opposite.

I am sorry to hear about your chronic health problems. I am sorry that it took you such a long time to work out which diet worked for you. It took me a long time too, but I, on the other hand, spent a long time *not* believing that gluten could really be the problem, ( hoping that it was not because I loved it so much, especially in the form of pizza ), ... returning over and over again to what is known as a "healthy balanced diet" ... and feeling worse.

It is true that it would have been a lot easier if gluten had not been the issue. It is true that it can make life difficult in some ways, but every time that I made the effort my quality of life improved dramatically. I wish that I had been sure about it, and been able to stick to it consistently, earlier! I "wasted" years on dithering. I think it would be a good idea to screen people for it in infancy.

It is absolutely not true that one risks malnutrition on a gfcf diet, and I think that it is quite irresponsible to say so. People are already often quite frightened enough about changing their diets, from what they have always eaten, and what society tells them is "good", to something as alien to them as a gf diet, without your adding to their fear with such wildly inaccurate statements.

A feast fit for kings, princes and even paupers, :lol need not contain gluten or dairy; you can choose from red meats, fowl, fish, nuts and seeds, eggs, herbs, various vegetables, salad and fruit ... aswell as rice, and potatoes.

So long as people can eat fish, carrot or other carotenoid-containing food, and salad or some kind of green veg on a daily basis, ( even if the fish is out of tins ), and preferably some meat a couple of times a week, and/or eggs ( and/or serious amounts of rice and pulses if vegetarian, with good oils like palm or coconut or olive to accompany them in the absence of animal fat, which is the best ), most people are in no danger of malnutrition.

I'm simply saying that as 1% of the population is celiac/gluten-intolerant, as 10% have elevated levels of gliadin-antibodies, as various percentages of the population are sensitive to/have difficulty metabolising lectins in grains, and/or have trouble with high-glycemic index carbohydrates, ( which increasing numbers of studies are showing have a negative impact on cognitive function over time ), and as people on the autism spectrum are just as likely to have these problems, ( ie. that there is at least a one in ten chance that some sort of exclusion diet would probably be a good idea ), plus the evidence that gluten and casein have an increased impact on gut permeability in a significant number of people on the spectrum, it may be worthwhile for anyone to experiment with a gf ( and maybe cf ) diet ( if they have chronic health problems, whether physical or mental, mood or cognitive function ), for a few weeks or months at least.

You checked gfcf out and it didn't have any effect on you; that's great. You do not have to cut out gluten from your diet.

I have not claimed anywhere that a gfcf diet cures ASD's, what I have said is that for a significant percentage of the population, gluten can have a very negative impact on both physical and mental health, ( that includes mood and cognitive functioning ), that certain people are more susceptible than others to its effects, and that certain kinds of exclusion diet can help with memory, executive function, reading and writing, mood/depression, temper, sleep, etc.

I can believe/imagine that your experience, your experiments, the time it took you to find a solution, the many hopes which came to nothing, has left you feeling rather bitter and disillusioned about a great many "alternative"/non-traditional approaches to dealing with ill-health. I realise that many may be quackery, but diet is not one of them; it is just individual, what works for you may well not work for someone else, one's man's meat is another man's poison.
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Last edited by ouinon on 20 Aug 2010, 2:13 am, edited 8 times in total.

It's really hard to cut all the Gluten and Casein out of my diet, but when I have done it, it seems to help with feeling better. I have seen some improvement in energy which affects a whole range of things. Though most of these foods high in this are just bad for your diet anyways. However, I've noticed that I get nauseous less often even then, and especially when I wake up, I feel better. I was seeing myself be able to clean up messes that normally make me puke if I try.

Probably that. I couldn't say.

Interestingly, since being diagnosed with Asperger's syndrome, I have kept a diary of social stress. My AS diagnosis is relatively recent, while my abdominal problems were diagnosed as IBS / inflammation of unknown aetiology etc since teenage. The social stress correlates extremely well with my bouts abdominal pain and bowel problems, far better than any food item that I have suspected in the past. Interestingly, a lot of foods (refined sugar, white baked products and highly processed foods) are associated with social stress, because of the food present with certain social activities and people. (One striking example is baclava, which has invariably made me very ill and which I almost invariably eat when visiting my in-laws - I have now found that baclava at home does not make me sick). Being aware of the effect of social stress, especially the delayed reaction to severe stress and the build-up of illness from prolonged stress, makes the condition far more manageable than anything I have tried before.

I would agree that the caffeine, alcohol, refined (white) sugar and flour, high glycaemic index foods, hydrogenated vegetable oil, palm oil and corn syrup (which is the typical Western diet of excess) is bad for health, and in turn reduces the capacity for coping with socialization, as if they make autism worse.

I've been on a GFCF diet for the last two months, for Chronic Fatigue Syndrome. It was recommended by my doctor. She said to give it at least two months. The last few days I've cheated and I actually feel worse, so maybe there's something to it, but I also exerted myself too much physically and that always makes me feel much worse, so I dunno...

The problem I have is that there's never anything for me to eat! I don't live near any health food stores, and I don't have a car, so I can't get the special gluten free stuff, and even if I could it's $6 for a loaf of bread or a pound of pasta. My local supermarket doesn't even have any dairy free chocolate, except for Peanut Chews and Junior Mints, neither of which are very good. It's also been so hot this summer that some days it's impossible to cook -- and having CFS I'm often too tired to cook. I end up just eating beans and fruit, and drinking soy milk (I'm also vegetarian). I'm starving!

You need alternatives to the staples, and then everything that goes on top should be easy.

Try potatoes, potato flour, potato farls, pumpkin, yam, sago, tapioca, buckwheat, quinoa, millet, sorghum, (gluten free) oats, oat porridge, pinhead oatmeal skirlie (a fabulous multipurpose dish), corn, cornbread, nachos, rice, rice flour, rice noodles, bean noodles, (gluten free) couscous. Indian, African, Chinese and Japanese convenience stores are great.

Look for traditional recipes, preferably things you could cook in bulk - like potato pakoras or oat cakes / flapjacks - to use as needed.

I appreciate the suggestions, and I would be happy to eat many of those things, but the only ones of those that I can get at stores near enough for me to get to on my bike (and my biking range is limited by my chronic fatigue, so I can't bike that far) are potatoes, yams, oatmeal (which I don't like), corn, and rice.

I tried the diet to help with Asperger's and found that it did not change my personality. However, it is such a healthy diet that I try to stick with it today as it gives me more energy and less gastrointestinal discomfort.

I ended up healthier off GF/CF. I pretty much run on bread and milk (and fruit and vegetables and soup and coffee). Bread is one of the most basic and easy to digest of foods (unless you have celiac disease) and makes a great staple for a decent diet. If you do have celiac disease, then rice will probably be the basis of your diet, but wheat is just as good.