Any Adults try GFCF?

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I was gluten free for a year and vegan for 7, including the GF period. I was also vegetarian for about 20 years but none of it seemed to make any difference. I was always screwed up. only meditation helps me. It even reduces my stimming.

Not trying to argue with anyone, or encourage or discourage, but if that's all that's discouraging you, re-think it? I have to be gluten free -- a crumb lands me in the hospital. The dairy I have given up by personal choice (for physical health, and environment) although here and there I'll have some, if I just plain feel like it, but not as a regular thing.

Anyway, I don't have much to spend on groceries, and don't shop more than every week or two, and it's quite do-able once you get used to it.

As far as money, rice and potatoes are naturally GF, so continue to eat those to fill up, in all forms. The GF breads are ridiculously expensive, bad texture, and are about 100-110 calories per slice, as opposed to 30 for a rice cake. So for breakfast, those are quick and easy -- some natural PB and jam with my coffee or tea.

As far as shopping often, I'm assuming you mean to buy fruits and veg? I used to eat my 5 a day before I was diagnosed with coeliac, and still do, so that doesn't change a thing. You should not have to change your shopping for that aspect (unless perhaps you didn't eat much fresh stuff before GF-CF?). But you can get canned/jarrd/frozen stuff, if it's hard to get out and get things. I get lots of tinned fruits in their own juices, applesauce, or things like sweet potatoes (fresh) which keep well, and carrots (fresh), and so on.

I don't eat meats and poultry very often (mostly fish) but that doesn't play into the GF-CF diet anyway, so you can do what you've always done there, with no change in price or shopping frequency.

Milk? You can use soy(a), rice (watch that -- some brands are not GF, due to cross contamination in processing), almond (but that one is more expensive), or do without.

One suggestion is to go to a coeliac/celiac forum and do some reading -- these are people of all incomes, all walks of life, who have no choice, so they have to make it work. So if they can do it, so can anyone else. It does take some initial effort, but liek others, you can adapt and eventually get used to it.

There's a difference between the GF/CF diet and avoiding gluten because of celiac disease, lactose intolerance, or a wheat or milk allergy.

Treatments for intolerance or allergy have always consisted of avoiding the substance to which you're sensitive. That's mainstream medicine, something any doctor would advise, and it's been proven to work. We also know that autistic people suffer more from stress, including stress resulting from physical symptoms of allergy or intolerance, than neurotypicals do; and that it's therefore especially important to avoid the substance that causes the problem.

What hasn't been proven to work is a GF/CF diet, to improve or remove autistic traits, in people who are not allergic and do not have celiac disease or lactose intolerance. In fact, they've shown it not to work in a few studies.

The placebo effect is a huge phenomenon. In our poll, 27% of the people who said they tried the diet said they are on it because it works. Some of these people (like Jigsaw, above) have celiac disease, lactose intolerance, or allergies. We know that the placebo effect works on anywhere from 20% to 90% of people, with higher numbers present in conditions that relate to the brain and nervous system. Even if we don't throw out all of the cases where improvement is probably related to the relief of allergy/intolerance symptoms, we would still be way below the range where the placebo effect can be "blamed" for all of the improvement presented--and that's what the studies found, too.

I'd like to try it but don't know enough about it. I don't eat much or a great selection of ffods and am already vegetarian so I'm not sure if it'd be good for me even if it did get rid of some of teh stomach/digestion types probs I have

No argument inferred.

Think of the terminology I used as relative. Also, I should have said, "It's CAN be almost impossible to stay on it all the time." A great deal is dependent on personal circumstances. Just because there are many who do manage to do it, doesn't mean it's possible for all.

What constitutes "a lot of money," is relative. Years ago, my wife and I totally changed our shopping habits to drive our grocery expenses down as far as we could while still feeding us and our three kids well. First, we started shopping at some nearby towns, comparing prices. We realized that in one particular town we could buy nearly everything we needed for anywhere from 5 to 6 weeks for around $400. We still have to shop locally for milk, eggs and produce for obvious reasons. We invested in a small chest freezer to cut down on the number of large shopping trips because the town we now shop in is twenty miles away.

Because of all these changes, we now spend an average of about $125 per week to feed all five of us. Most everyone we know around here spend twice that for less people.

When we did change our habits for a while, we quickly found that for the same shopping budget, we ended up with far less food.

It would only be fair to mention that our diet change was more drastic than cutting out gluten. We were also migrating to a high protein low carb diet, which if I could afford to stay on, I would.

Another thing to consider is that we were doing this for the entire family, and the kids don't need to be anywhere near as restricted as we both wanted to be. Their needs are not the same as ours.

Over time we found that we would run out of the foods we needed, and had no choice but to resort to eating what was left.

Money isn't the only factor either. Time is a huge factor. To eat the optimum foods we need to we need far more time for preparation than we actually have. There is no trade off when it comes to time. I could explain why, but it would require a lot more space in this post than it is worth.

On the point of fresh produce, we end up wasting a lot because to buy fresh cost effectively we often have to buy more than we can reasonably eat before it spoils. We do end up getting more for our money buying everything uncut, but still a lot of it is wasted.

The bottom line for us was that it did cost a great deal more money than we normally spent, and a great deal more planning and time, which we did not have, so we ended up wasting a lot of food because we couldn't prepare it properly, and would end up having to run to local stores to buy something quicker to prepare.

Logistically, it just didn't work for us.

There are plenty of testimonials on the internet advocating the GFCF diet. Some are quite emotional and suggest that the GFCF diet really does work. I think it would be very odd if all these testimonials were actually based on the placebo effect. Here are 2 examples:

"Occasionally, when he is out with friends (which I doubt he would be if he was not GFCF) or they have some special celebration at school, he does eat cake or pizza or a burger or whatever, which contains heaps of gluten and/or casein. He then suffers for it over the next few days with painful and annoying mouth ulcers, occasionally cystitis-like symptoms and/or diarrhoea, very loud noisy voice (more monotone than usual) and big problems with concentration with bouts of “absent mindedness”, spacing out, as well as anxiety, depression and just feeling stupid, inadequate and confused. He hates the way it makes him feel, and doesn’t want to go back to feeling like that all the time."

"Because I was already an adult (early 40′s) by the time I tried the diet I don’t suppose the people around me noticed much of a difference in my behaviour – I had learned to behave in certain ways in certain situations, even if it didn’t come “naturally”. But I know how I felt and the mental changes that happened, which were so gradual that I didn’t actually notice them until the first time I went off the diet to do the food challenges and suddenly it all came flooding back. I knew then that gluten and casein were a BIG part of my problems with depression, anxiety, and spacing out and occasionally having these weird episodes where I knew I was saying the wrong thing (usually something embarrassingly inappropriate) but couldn’t do anything about it."

I agree that there has to be something to this theory -- things like this don't arise out of thin air. Being an uber-sensitive coeliac (as well as having ASD) I have to know where 'hidden' gluten is found, and I wonder if many people think they've tried a GF-CF diet but haven't really got all the gluten out of their diet?

It's harder than most people realise. It's in many chocolate bars, in most mustards, many mayo brands, many prepared/packaged/processed foods of all sorts (most tinned beans, even most oven-chips contain gluten), cold cuts, ready-meals, even some veined cheeses, sauces (brown, curry, etc), many flavoured crisps (including those which say 'Suitable for Coeliacs,' but it only has to be under 300 ppm, which doesn't mean GF). Additionally, many foods are cross-contaminated with gluten during processing (Green & Black's admit that their chocolate, for example, doesn't include gluten, but the bars are run on the same machines as gluten-y foods).

There aren't enough hours in a day to list all the places where 'hidden' gluten can be found. For me, the solution is to use whole foods (one ingredient, in its natural state), which means an apple, a potato, a piece of fish, etc. I don't eat out at all -- I know I'd get 'glutened' (cross-contamination). I can make anything I want at home (the Internet is great for recipes), for far less money, so I don't miss the ridiculously high prices of meals in restaurants. And they do sell everything from pizzas and fish fingers to biscuits and chicken nuggets in Sainsbury's and other stores, when I want something prepared but still safe.

You also have the whole situation of cross-contamination within the house -- crumbs in cutting boards, on surfaces, or someone bakes and you have small amounts of flour 'poofing' through the air, which settles on things (so unless you wash the plate or cup before use, you ingest gluten), and so on. I maintain a GF house to avoid cross-contamination -- anyone living here or visiting eats GF. Coeliacs get blood tests regularly to be sure that they aren't accidentally ingesting any hidden gluten (the health problems from continuing to consume gluten are serious), and my tests are always at '0' (unlike coeliac friends who don't live in a GF house, and have positive numbers on their tests).

Furthermore, I could be wrong, but I don't believe that if you eat 90% less gluten you'll feel 90% better. It's like saying that if a peanut allergic person eats only one peanut, they'll have a really tiny allergic reaction, but if they eat a handful, they'll need their epi-pen. Any amount of things you're sensitive to is problematic, IMHO.

Finally, while I was just recently diagnosed with Asperger's, but was diagnosed with coeliac years back, I can honestly say that I do vividly remember a drastic change in my 'brain' when I went GF, but I obviously can't re-test that belief by putting gluten back into my diet for a period of time. But I'm able to work full-time as a teacher and I live what I would consider a fairly productive life in some respects.

Just one person's take on all this . . .

Jigsaw,

I would be very interested as what you make of 'secondary glutenisation'. Since you say you are very sensitive to small amounts of gluten, I'd like to know if you ever experience glutenisation from e.g. chicken or eggs?

Here's a quote from a website about it:

Also, when you say that most tinned beans contain gluten, I assume you mean baked beans e.g. Heinz? Or do you mean any type of beans e.g. a tin of plain kidney beans in water.

many thanks,

Paul

Saw a research presentation by Pat Levitt, a researcher from USC today. He verifies that there is no evidence of the leaky gut theory. HOWEVER, he is studying a gene called MET that shows a prevalence of mutation in ASD individuals and is present in the development of the intestinal tract (in utero) as well as when intestinal lining is damaged and undergoing repair. His initial studies have shown strong evidence (and been replicated) that mutations in this gene seem to correlate highly with ASD diagnosis AND gastro intestinal issues in concurrence. There is currently a larger, more pointed study underway (at three facilities across the US) which should provide much more solid conclusions from results so far.

My gut issues have cleared up significantly from GFCF (as long as I also eliminate soy and eggs). It doesn't fix my other issues, but it does make them easier to cope with. Levitt mentioned this as well, that clearing up the tummy trouble may help other inventions have greater effectiveness.

I'm giggling because he also brought up the placebo effect. Apparently the placebo effect with Parkinson's Disease is 26%. His friend with Parkinson's told him, "bring on the placebo effect, I want some, because the L-dopa isn't working anymore."

Thought you all might find that interesting, given this convo.

I had heard of the MET gene research/findings but he may be somewhat behind the times with ref to "leaky guts".

Intestinal permeability, ( in everyone ), is triggered by a number of things, including certain peptides/proteins in gluten and casein, increased by infection/inflammation, and may be increased by high-fructose diets too, among other things. But "leaky gut" theory hypothesises that perhaps some people's intestinal walls open more/for longer than normal in response to certain factors. Levitt doesn't appear to be up on the following latest research if he said that there was no evidence in support of the "leaky gut" hypothesis because evidence now exists that the intestines of a subset at least of people on the spectrum open more and/or for longer in response to gluten and casein than other people. Recent findings ( requoted from earlier in thread ):



http://www.ncbi.nlm.nih.gov/pubmed/20683204

It looks as if a significant number ( 36.7% ) of people on the autism spectrum may be unusually susceptible to the effects of gluten and casein on intestinal permeability.


:lol
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I was on atkins long time i knew anything about autism.
I feelt great. I was still "asocial" (I was considered asocial before diagnosis).
I was still dyspraxic (they called it ambidextrous brain back than, parents and teachers thought was that old nanny forced me to use right hand instead of right).
Change was that i wasnt so depressed and manic anymore.

Atkins doesnt allow carbs (gluten is found among carbs).
Atkins doesnt allow diary products (casein is found there) since they contain whey protein also (whey protein causes insulin spikes just as carbs).

It didnt ate any casein and gluten for weeks and I felt great. As soon I started eating them again I felt depressed and manic again. Problem was I didnt knew it was about casein and gluten, I tought it was all about carbs

Finally after diagnosis I found out about this gluten free - casein free thing.
This is just my experience.
Good luck to you people.