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Gluten: Bad for us ALL !

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Oh, and the PS: this finding that links gluten intolerance with schizophrenia is just mind-blowing: if that's going to open up a clear connection between those gut issues and both 'psychiatric' and neurological illnesses, that could really revolutionise the medical science of a huge range of conditions...
 

Calathea

Senior Member
Messages
1,261
The gallbladder thing - I think the problem is that most people with gallstones do not get gallstone attacks, they're usually silent. So you can be suffering abdominal pain, have a scan, have gallstones show up, and the doctor assumes cause and effect which may not be the case. They should probably do further testing to find out exactly which foods trigger the attacks. If you get the classic attacks after eating a fatty meal, with the symptoms exactly right, then it's probably the gallstones. If you get attacks of abdominal pain which do not fit this profile, then they need to do more investigation before whipping out your gallbladder. Of course, since gallstone attacks are extremely painful, they are not keen on inducing them in order to double-check. I found that the surgery was worse than a gallstone attack, but lots of people find that it's the other way around. I was lucky in that I was indeed getting gallstone attacks, judging from the symptoms and how it fitted my eating patterns, and once the gallbladder was out, I've been able to stop fretting about how many grams of fat are in every meal. But I've met a good few people who had their gallbladder removed and found that it didn't solve the problem, and perhaps even created new problems of its own.

I too have wondered about a chicken/egg scenario with ME (and other conditions) and food intolerances. On the one hand, if there is a food which is bad for you, you want to be off it as soon as possible. On the other, sometimes the food doesn't seem to be bad for you when you're healthy, it takes a few years before it becomes problematic, and you don't want to be restricting your diet unnecessarily. Anyone substantially affected by ME is already struggling to cope with daily cooking, let alone really nutritious cooking, let alone really nutritious cooking with dietary restrictions. The main things that I got out of my year being GF were a) I learned a few cooking tricks, such as using GF flour for anything that will be frozen and microwaved (I developed a fabulous vegan GF chocolate prune cake); b) I can now cook GF for someone with confidence; c) I can at least cross that one off the list of things to try. Which is something, I suppose, even if the whole venture was inconvenient and expensive. Other people find that it's life-changingly wonderful, so I do realise how important it is to try.
 

hixxy

Senior Member
Messages
1,229
Location
Australia
Oh, and the PS: this finding that links gluten intolerance with schizophrenia is just mind-blowing: if that's going to open up a clear connection between those gut issues and both 'psychiatric' and neurological illnesses, that could really revolutionise the medical science of a huge range of conditions...

This link has been around for a while now. Just so many nay sayers around keep it under the radar. I think the Pfeiffer moevement is bringing it to the fore (even if you don't agree with all their methods), there are people recovering from these diseases.

Just like my remission I had a few years back that I've mentioned too many times. I suffered life long anxiety, depression and adhd. They all vanished for 1 1/2 weeks along with my ME/CFS and MCS after and antibiotic combo. Damned if I can repeat it tho!!
 

brenda

Senior Member
Messages
2,270
Location
UK
I have been off gluten for 3 years but read recently that you can eat it if the bread has been fermented. I bought some sourdough rye to try and it works - it is fine.
 

Calathea

Senior Member
Messages
1,261
Interesting. Out of curiosity, have you also tried going back onto gluten to see how that affects you? Alternatively, have you eaten any gluten by accident recently?
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Info on sourdough ... I'm much too sensitive to gluten so I wouldn't dare eat this.

http://blog.trackyourplaque.com/2010/12/put-lipstick-on-a-dwarf.html

http://www.ncbi.nlm.nih.gov/pubmed/20975578

I've met celiacs who can eat gluten and not get sick but according to some studies, their digestive tracts are still being damaged.

After having ataxia for 16 1/2 years which appears to have been from eating gluten since I'm a celiac with the DQ2 gene, I wouldn't take the chance of it damaging other parts of my body.

If you look at theglutenfile, there are studies on how it affects different organs not just the celiac section of the digestive tract and yet that's how our medical community is still defining whether people are being damaged from consuming gluten.

FWIW ... I don't enjoy eating grains anymore because after eating whole foods for a few years now, these foods taste like flavored grains. BLEH ...

tc .. x
 

mellster

Marco
Messages
805
Location
San Francisco
Hixxy, you took the words out of my mouth! I am somewhat convinced that "leaky gut syndrome" is quite prevalent among CFS sufferers and gluten just happens to be a tough molecule for the immune system to deal with.
I believe this to be true as well. If your gut is ironclad, you can eat anything, I mean there are people who can actually eat iron and nails and rocks and whatnot. We have a trigger or chronic issue that eventually screws up our gut flora and from then it's just tough. Nevertheless for somebody with an already sensitive stomach gluten avoidance probably makes sense.
 

brenda

Senior Member
Messages
2,270
Location
UK
If I get some accidentally I am ill with it. I probably stick to gluten free just in case but its nice to have an option occasionally.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi Cala,

It could be that the people who don't feel better after having their gall bladders out had other problems too. I probably had celiac disease at the time mine was taken out. Not to mention my liver was overwhelmed from all the garbage I was eating. And my digestive tract had damaged via egd and colonoscopy.

I actually don't remember my GB pain being triggered by certain foods. It would just come on every few months for a few days and then go away for a few months. I "think" it only hurt if I was passing a stone or sludge ... I took a green liquid for the pain and it helped. I can't remember the name ... but it had an opiod in it.

Like kidney stones when our bodies produce these or decide it's time to move these doesn't appear to be predictable. I'm mostly on the low ox diet but I still get kidney stones once in a blue moon now .. well there's a link I hadn't thought of ... lol ...


tc ... x
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
IMHO, it's both leaky gut and gluten intolerance. Genes determine which of us will get certain autoimmune diseases from gluten but there are a variety of things that can cause leaky gut. The genes associated with gluten intolerance are still under investigation. DQ1 has recently been added to the well known DQ2 and DQ8.

Most, all ?, autistic kids have leaky gut and are intolerant to both gluten and casein because the proteins in these act as opiods in their system. I would imagine an autistic child who responds well to the GFCF diet but has one of the genes would never be able to eat gluten again ...

So why aren't we being tested for these genes ? I read an article on this once. Actually it was NIH mtg minutes where a doctor who specialized in celiac disease recommended this and the NIH said it wasn't cost effective ... I may still have that somewhere.

I hear a lot of celiac horror stories in my support group. One woman was diagnosed as a celiac when she was a child so her parents took it out of her diet. She eventually stopped reacting to it so her parents put it back into her diet. It was thought for a long time that celiac disease only occured in children. Then as a college student she became very ill, had various studies and later figured out that she was a celiac AGAIN ..

It looks like I actually OVER PRODUCE gluten antibodies according to my stool tests. My levels are as high even if I only eat food that is cross contaminated. I was eating one GF cookie and some GF potato chips before every study to see if I could get away with these foods now. It was sorta subconscious on my part. :angel: My doctor gave the me "what the hell are you thinking" look when I innocently told her what I was doing ... :oops:

Since many of us have up regulated immune systems, I wonder how common this is ...

tc ... x
 

Calathea

Senior Member
Messages
1,261
Gallstone attacks are over in a few hours, because that's how long it takes for an expelled gallstone to work its way painfully out of your body (the gallstones are wider than the ducts they travel through). If they go on for days then that means that a gallstone has got stuck and caused an infection. This is why you have to go to hospital if the attack lasts for more than 12 hours, because then it's probably more serious. As far as I'm aware, that's universally true. Short of having emergency surgery where the surgeon also keeps the gallstones to show you later, you never get to see the gallstone, you don't know how big it is and whether or not it involved sludge. So if your attacks went on for days, and you weren't being hospitalised with an acute infection, I strongly suspect that they weren't gallstone attacks at all. What symptoms did you get, out of curiosity? How severe was the pain?

Yes, I presume there are some people who have silent gallstones and other issues which mimic a gallstone attack, while there are others who have active gallstones as well as other issues, so that both are causing problems. I found that once I had experienced a gallstone attack, it was obvious when another one occurred, mainly due to the intensity of the pain; before I had suffered an attack and been given a diagnosis, I wouldn't have had a clue. With other types of abdominal pain I've had, I haven't been quite sure what was happening, and I'm fairly sure that I have muddled up intestinal pain with menstrual cramps on some occasions, and muddled up intestinal pain with bladder pain on other occasions. I definitely remember my GP palpating my abdomen when I was reporting what I took to be intestinal pain, and her saying, "Actually, that's your bladder." So I think that it's very easy to misinterpret abdominal pain.

My first gallstone attack should have been blindingly easy to diagnose by the emergency doctor who came out to see me in the middle of the night: excruciating pain in the upper right quadrant which had me curled up in a ball unable to move, substantial hypothermia, nausea, occurred a few hours after eating a fatty meal. Yet he didn't even examine my abdomen properly, failed to take my temperature correctly, and made vague noises about "probably a virus". Thankfully the GP who saw me the next time I was having an attack was a better doctor, spotted the problem immediately, and sent me for an ultrasound to confirm it. I dread to think of how much misdiagnosing is going on in this area.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi cal,

I feel like I've answered your questions and we're just beating a dead horse now .. If you need to discuss gb anymore, could you please put
it in your gb thread ? I may have already answered these questions there too .. Thanks .. X
 

Calathea

Senior Member
Messages
1,261
Well, if there's a type of pain which is typical of gluten sensitivity, it would be very useful to know what it is. You said that you had what you thought were gallstone attacks, and then described something which wasn't actually like a gallstone attack, and also said that this turned out to be caused by gluten rather than gallstones, so nope, not entirely clear yet. About the one thing I feel certain of by now is that the abdomen is a murky place and that diagnosis is a thorny issue. For instance, if you have abdominal pain due to consuming gluten, how long after eating the food does it occur? Does it have any specific features? Is it easy to recognise once you know what it is, or can it still be confused with other types of abdominal pain? Are there any other symptoms which tend to occur with it? There are lots of people on this forum who are potentially gluten-sensitive, so it really would be great to know more about how to spot it. (And also takes the conversation away from gallstones - you're right, we were wandering off on a tangent a bit there.)
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Ok, you seem confused ..

As fas as I know there isn't a TYPE of pain that's normal for gluten sensitivity or celiac disease. I've read that diarhea is
common but not pain. But I could be wrong. I've never looked for this specifically.

Theglutenfile should say what symptoms have been found to be common. But the point of this article
was to show that there are many possible problems associated with gluten. Not just digestive.

I don't get any pains or digestive problems from gluten cc. I get nocturnal myoclonus and insomnia. I would never eat gluten on purpose to see what happens since I react so harshly to cc.

I had stomach pain after eating for at least 6 months after going gf. But I don't know why.

My gall bladder pain was diagnosed as gall bladder attacks. I don't know where you heard that
there was a timeframe for attacks but it's obviously wrong. If I had a nickel for everytime a doctor
was wrong, I'd be rich.

My tests showed that I had an 11% function
and so they removed it. I stopped having these attacks after it was removed.

But I was still in
pain from gas, gerd, gastroparesis, diverticuli, constipation, ibs, etc. all the time so it didn't eliminate
all my digestive pains. I don't know if I was a celiac at the time. No doctor looked .

I hope this answers your question .. Tc .. X
 
Messages
16
I for one would not be surprised at all if it turns out the we are all gluten sensitive to some degree.

There is some very compelling information out there.

In fact, I think our whole western diet is pretty sad. So much processing, chemicals, additives.. not to mention genetic modification.

Obviously some people are more sensitive to this stuff than others, but I do believe if we keep interferring with our food the consequences will become worse.

Myself, my husband and my 2 daughters have been gluten free (entirely, replaced the toaster etc etc) for 3 weeks now. And we are all experiencing health changes for the better. The reason we went gf was for my eldest daughter who has been diagnosed as gluten intolerant. However, we are all benefiting. My husband's life long depression is easing up, my 2 year old is sleeping SO much better, and my 3 yr old (the only one with a 'diagnosis') is a totally different kid. Unless we mess up her diet of course!

I think if people are interested in trialling gluten free they really need to go the whole hog with it. You won't get an accurate picture of what it does to you if you are still having a bit.

Actually when I was first sick I tried gf then (my Aunt has celiac disease so I did wonder...) and I didn't notice any difference, but in hindsight I wasn't doing it as thoroughly as is necessary.

Anyway, it will be interesting to see to what extent this helps my ME. I will be very interested to see what the next few months hold.

But either way, I have read enough to make me sure that me and my family will eat gluten free regardless.
 

Kati

Patient in training
Messages
5,497
la-la-la-la-la I can't hear you!
People have eaten bread and flour products for centuries.
Diet is not what makes people sick. And diet is not what will get ME patients getter. That's my take. o_O
However feel free to cut whatever you like in your own diet.
 

brenda

Senior Member
Messages
2,270
Location
UK
Kati that is just plain wrong. In the past there wasn`t the pollution we have now and peoples immune systems were healthier.

Whatever the reason people get sick, once they are sick they have severe nutritional deficiencies, and the way to get healthy is to make sure they are getting what they need from diet, with extra help from supplementary nutritional substances which will get the healing to start by providing what is missing for mitochondria function.
 

Waverunner

Senior Member
Messages
1,079
Kati that is just plain wrong. In the past there wasn`t the pollution we have now and peoples immune systems were healthier.

Whatever the reason people get sick, once they are sick they have severe nutritional deficiencies, and the way to get healthy is to make sure they are getting what they need from diet, with extra help from supplementary nutritional substances which will get the healing to start by providing what is missing for mitochondria function.

I think, that you are wrong. In the past there was a lot more pollution and a lot less hygiene. There probably is a training effect for the immune system but if you were right, mortality should be much higher now, than in the past. This is not the case, of course, people in the middle ages died a lot sooner than we do today. In addition to this, just look at the industrialization where not only water but also the air were highly polluted in cities. Water and air are cleaner today, than they were 30 years ago. I would agree, that more people have chronic diseases today, than in the past but it is important to know that natural selection was a lot more active in the middle ages. People with certain diseases just died and were not allowed to reproduce so faulty genes were not passed on to the next generation. Moreover we exercise a lot less today.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I would agree, that more people have chronic diseases today, than in the past but it is important to know that natural selection was a lot more active in the middle ages. People with certain diseases just died and were not allowed to reproduce so faulty genes were not passed on to the next generation.

It's funny you mention natural selection. I view the ability to understand new info even if it goes against the grain (pun intended) as part of natural selection. Those who can do this will survive, the others won't ... the earth is round ... :nerd:

tc ... x
 

brenda

Senior Member
Messages
2,270
Location
UK
.Water and air are cleaner today, than they were 30 years ago

Do you have some evidence for this claim? Due to the culmulative affect of mercury from cremated bodies with amalgams alone, I dont see how that is possible. Add to it the increased use of pesticides and fluoride and you will have a hard time proving it