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  1. I am actually amazed at how many of us with celiac or severe gluten intolerance have this problem with nerve and tendon fragility--though I suppose it makes sense due to malabsorption.

    Is all of this down to mal-adsorption?

    I honestly don't know but I feel there may be something more systemic?

    Has anyone been tested for Lupus? (I know House always say's it's not Lupus but...)

    It seems so common that another autoimmune reason seems as likely as mal-adsorption? It might be lupus or related fibromyalgia or something new?

    I'm just wondering here ....

  2. Your bluntness is fine and much appreciated, please do not be sorry. :) You are right. My body is responding to everything differently now -- oh so much differently!

    Even a year back, my metabolism was acting differently -- it was definitely more sluggush, and of course I was sick as heck, but oh my goodness, the weight loss challenge now makes me feel as though I am in the Twilight Zone.

    Yes -- I am in a new territory, and I need a new understanding as well as a new set of directions. (For the record, I am 56.) I haven't quite found it yet, but I know I will.

    I've started working out 25 - 40 min a day. No weight loss progress yet, but it feels good. I also keep reminding myself how much better I feel overall, weight aside.

    I really appreciate all the information everyone is giving here -- more than you know. This is a great group of very intelligent, sharing people . . . and an excellent discussion.

    Thanks Lynayah, the last thing I wanted to do was offend but I also felt sometimes you have to take off the sugar coating. It has been a hard thing for me to accept but you only need to look at the countless super-fit professional athletes who have thought the same way. (Pick your own sport but you will countless find many who 'let themselves go'.

    My theory is really not quite so tough as 'letting themselves go' but people who worked out all the time and knew their bodies and as their body and life balanced changed didn't accept that difference. I'm convinced that people who used to work out in a really planned manner find it more difficult to adjust to the fact their body no longer responds in the same way.

    The other side of the story though is all those that do get back in control.

    Food combining goes by many names and has as many variations:

    The basics are you eat food that has the same digestive needs together.

    This really means that the starchy carbs and proteins are eaten separately. Things like vegetables (excepting potatoes) are in the middle group and can be eaten with either.

    Scientifically people struggle to say why it works, yet those that do it are usually very vociferous supporters.

    I was introduced by a 'Californian New Age' book called 'Fit for Life'. Frankly it's a little too Californian New Age for me... although the author's are vegetarian they don't impose that and say that is their choice.

    Scientifically though my ex-wife is a food analytical chemist and she said that the ways foods are prepared for analysis is exactly the same as the diet. The prep for analysis's is extensively documented and scientifically tested as this is basically the method to get the most accurate results.

    The most accurate results means extracting the maximum of whatever is being analyzed from the food ... in other words it is like an artificial pre-digestion.

    The book I found most useful is one called 'The Kensington Diet' but that said I only needed a look.

    I chose that book because the author (famous clients) was on a day-time TV program and the interviewer was having a go at different diets. The thing that surprised me was that people in the audience were really ready to defend the diet against the presenter and guest dietician.

    (Sideline: The presenter is a guy called Killroy-Silk, politician and heart-throb to a certain generation of ladies)

    Most of the ladies in the audience just dreamily agree with everything he say's, he is sorta a male model in his 60's Oprah ... yet very exceptionally for his program 4-5 people in the audience disagreed and continued to disagree ... and the one thing they kept saying was "I don't care what the dietician say's, it works for me".

    As you might spot the Atkins diet is a sub-set of food combining. Food combining is much older, Henry Ford had it in all his orphanages and did it himself. The paleolithic diet is another variation with the same roots.

    The basic roots are: When we were hunter gatherers we did one at once.

    That is we went out and brought back a stag and ate stag, we foraged and found berries and ate berries etc. What we didn't do was eat stag stewed with potatoes and other starchy foods.

    (If for no other reason pottery wasn't invented and we had no pots to stew)

    The theory is that starchy foods and protein rich foods don't digest as well when eaten together.

    Both are fine with the neutral foods (Carrots, leafy vegetables etc.)

    Here is the Wikipedia entry: http://en.wikipedia.org/wiki/Food_combining

    There are various theories why it works including the fact that food combining leads to a lower calorie diet. The only study I know doesn't test this: olay A, Allaz A, Ybarra J, Bianchi P, Saraiva S, Mensi N, Gomis R, de Tonnac N (2000). "Similar weight loss with low-energy food combining or balanced diets". Int. J. Obes. Relat. Metab. Disord. 24 (4): 492

  3. I have secretory IgA deficiency which showed up on a saliva sample.

    Positive fecal anti-gliadin antibodies from Enterolab. DQ8+DQ1 genes. Gluten free for 3 months.

    Years ago I was tested several times for immunoglobulins and they were always 'normal'....no IgA deficiency.

    So.....does gluten cause an aquired IgA deficiency?

    ..... Is this reversible on a gluten free diet?

    .......can you have a normal serum IgA, but a very low secretory IgA ?


    I'm not an expert but I don't think so.

    Low IgA is just something comes along for the ride with the 'weird' DQ human antigen profiles for celiacs.

    Is it possible you were tested for IgA serum but not the deficiency? (You say years ago and testing has moved on and IgA deficiency now 'included' in screening). This is partly just progress, the increased IgA deficiency awareness is partly (IMHO) just due to more people having different IgA tests and the frequency and numbers of people being tested as well as different test methods.

    However: Also to my knowledge IgA deficiency in itself is not harmful.

    Of interest there are 6 immunoglobulin (antibody) types: (well classes) (in placental mammals - this is sorta important of interest as expanded below)


    IgA is the only anti body transmitted through milk (human and otherwise) (hence the placental mammals)

    IgG is the only one which crosses the placenta and gives immunity to new borns.

    IgA is 'mainly' secreted in mucosal areas gut, respiratory tract and urogenital tract ... and can prevent parasitic colonization but IgG is the major 'bacteria and virus' killer.

    Hope this helps ...

  4. It has always been my understanding that any imported product must comply with US regulatory law, which would include the listing of wheat if an ingredient.

    Granted, corruption is prevalent in Asian countries. You can only arm yourself with information and make the best choice available. If a foreign product makes you ill, don't go there again.

    The corruption is really only the latter half the story ..

    The problem is 3rd world countries do not have the laws in place to start with and manufacturers do not have an audit of where bulk ingredients come form.

    MSG is MSG .. regardless of source. Governments want to maintain exports but this is way down the list of items, one of which (in common for most 3rd world countries) is not being overthrown.

    Anyone following international politics will know Thailand has been on the brink of a coup for some time.

    Short summary: http://news.bbc.co.uk/2/hi/asia-pacific/7584005.stm

    The derivation of MSG from wheat or any other source is really a low priority.

    Just one example: Traffic deaths in 3rd world countries accounted for 85-90% of 1.2 million fatalities worldwide.

    (WHO Figures) http://www.ncbi.nlm.nih.gov:80/pmc/articles/PMC1247497/

    Yes, people get sick from gluten but millions die in preventable road traffic accidents.

    Millions in Thailand die of drug abuse... easily preventable illnesses or just lack of clean water in many rural areas.

    (The latter being one of the present political problems for the current (military installed) government.)

    Just take a step back ... they are so far away about worrying about allergens in food.

    Corruption comes into play if they are 'discovered' by a country they export to.

    With the right money to the right official their export credentials will be changed for a different company with no trace back to the original one.

    As is so obvious from the melamine case, the FDA cannot possibly test each shipment, let alone each batch.

    Even when they do what comeback would you have?

    I personally have no idea of the source of MSG for Thai foods, more to the point the Thai food manufacturers probably have no idea either ...

    This concept is really not strange .. who knows the origin of the gas they put in their car?

    Regardless of the filling station brand it is a commodity, Exxon do not sell Exxon oil, Conoco Phillips don't sell CoP oil, they sell whatever they can source from wells to pumps as the cheapest.

    The US, Europe and literally a handful of developed countries have the luxury have having enough food, power and clean water. Along with this luxury we can start to develop policies and rules for allergens in food.

    3rd world countries are so far from this luxury... most would put clean drinking water way up the list.

    MSG may be cheapest in Thailand from beet, rice or even the original seaweed ... the idea they would pay a premium (for instance exporting MSG from the US to make food to export) is really way out.

    I actually appreciated hearing the first-hand account of the business in Thailand.

    Much of this is second hand, one of my best friends lived in Thailand for 12 years and although I visited you can't really understand the reality under the 'tourist exterior' until you live in a country.

    I have spent more than 50% of my adult life in 3rd world countries, Thailand has some specific problems but not vastly different to most 3rd world countries. We should remember that 'the developed' nations are not so far ahead in real terms.

  5. My GI said they would not test (genetics) until past age 2.

    Why? It is the only test valid before 2 years?

    If you had the genetic tests and the baby was DQ2 or DQ8 would that change your mind?

    As said earlier, it is every parents personal choice, I am just really trying to find out why, specifically what is the advantage when the disadvantages and risks seem so numerous.

  6. Boy did you go off the rails there gfp. Please provide your evidence that MSG is improperly labeled.

    Reality. We really don't need to worry about MSG.


    Why don't you provide evidence that MSG is properly labelled in Thailand?

    My advice won't hurt anyone.

    Your idea seems to be "We don't need to worry about MSG" Obviously you have spent a lot of time in Thailand and feel qualified to make this comment; you probably not only know the major food exporters but probably get invited to dinner by them on a regular basis. I'm sure on one of these occasions you probably discussed this at length at one of their beach houses.

    Or perhaps not? Perhaps in the absence of you knowing ANYTHING about it you could just not make a comment?

    Or it could be that food manufacturers in Thailand really don't care about the source of their MSG?

  7. Some people are hypermobile - their ligaments and tendons are already long, or very stretchy, and don't do as much work as they should holding a joint together. (The extreme form of this is Ehler's Danlos.) Strength training of some variety (I use my yoga practice, just pushups would not be enough for the shoulders and elbow) is about the best thing you can do in order to find strong, BALANCED, muscles that can support the joint doing some of the work the ligaments and tendons are supposed to do.

    (Of course, hypermobility may not be your problem, but if you can find a good PT to work with, they can help you figure out if that's the case.)

    My left arm already has shortened ligaments (indeed it doesn't stretch the whole way) after a injury years ago when I tore both ligaments.

  8. MSG can be derived from many sources. Wheat gluten used to be the primary source but has now changed within the US.

    Worldwide MSG is simply a waste by product commodity.

    It will be produced from whatever waste vegetable proteins are most available and most economic.

    I would think it is unlikely Thailand has rules about the source of MSG and even less enforcement, any more than it has rules about what drugs you can buy over the counter. Technically amphetamines (for instance) are illegal, in practice you can buy them over any pharmacy counter. Indeed, trying to buy any pharmaceutical products in Thailand usually means explaining you are NOT looking for uppers/downers or something to make you party all night.

    I have a friend who lived in Thailand for 12 years and is married to a Thai wife. She is one of the upper class yet since 13 (she is now mid 30's) she has been taking a birth control pill, marketed at children. The specific pill can be bought over the counter and contains everything a 13 year old could want from a birth control pill. Weight gain is controlled via amphetamines and barbiturates and the huge codeine dose assures long term addiction. After Thailand my friend and his wife moved to Kuwait, then Canada then the UK. So far she has found illegal sources in each of thee places!

    Bottom line: She want's a baby but not as much as she needs the 'birth control' pill. These pills are given out at school gates and available from any pharmacy. The 'problem' is widely known, indeed it was her parents informed my friend ... however it is also an effective means of population control for the government.

    Unless you lived in countries like this then you are living a different reality.

    In Thailand you can buy anything, including people ... to imagine they would control MSG sources is incredible.

    Crimes only exist for the poor, anyone else can usually bribe their way out.

    The very idea that Thailand would control the sources of MSG doesn't really bear thinking about? The idea they would happily mislabel and export it is the reality.

    If you want to buy a slave in Thailand (as a foreigner) then you go to the border control or police, they will happily sell you slaves they have captured or a Thai girl sold by her parents. The people who enforce this will kill captured babies because they have no resale value, do you really think they will enforce detailed checking of the source of MSG???

    It is absolutely laughable that a Thai exporter would care what the source of the MSG was and even if they knew would not declare it on labels. The obvious source for bulk buying MSG is China.

    Unless you believe (also laughable) that the US tests every consignment for gluten then it is not safe to assume a country like Thailand would be safe.

    The Chinese melamine in pet food and infant milk illustrates just how this works.

    Melamine took some time to find as initial tests showed 'rat poison'... (aminopterin) however aminopterin is illegal in China ... (so?) the reason this was dropped is it was inconsistent with the symptoms.

    However: the reason it was so hard to find what was the problem was really down to the normal contamination of chinese made food stuffs ... so many toxins were found that didn't match the symptoms.

    My brother does extensive business in China, even though he tests the product he has to test every batch. Even though the manufacturer in China knows he tests they still send contaminated product with astounding regularity.

    It's still marginally cheaper for him to buy from China but their answer everytime he gets a contaminated product he has to throw away is "buy elsewhere and see if we care".

    Last time he visited he had to bribe the police so much that the Chinese source is becoming uneconomic.

    The reality is the only pure product coming from Thailand are hard drugs where the penalty for delivering contaminated product is death. To imagine that Thai exports are somehow better controlled than Chinese ones is not the reality.

  9. Thanks, Gfp, that does make sense as a possibility and thanks for your knowledge. I guess I have very little faith in doctors after they couldn't diagnose me for 7 years, but maybe it's time to ask around for a good one, give it another try, and see if I can figure that out. I suppose it could be something like a parasite (yuck) and I have thought lately that it may well be a yeast problem - Before that, I just assumed that I was one of those people that couldn't tolerate sugar once the gluten problem kicked in. Again, I really appreciate the help. :)

    I share your feelings on doctors: however some stuff is mainstream and even a poor doctor can follow the diagnostic processes.

    Parasites might be yuck ... but they are also usually/often easily treatable and curable.

    Often this involves drugs and therefore the drug companies ensure doctors have the information as opposed to diagnosing celiac disease. Anyway, its worth a go if its easily treatable and makes your life better!

  10. EXACTLY! There are lists and lists of possible problems that gluten can cause. It seems everyone reacts to it differently. They are not always sudden, noticable, or even obvious abdominal problems. Babies cannot tell us what they feel, we can't look inside their little brains to see if it's developing properly and/or if gluten is somehow affecting development........I just feel that when it's in the family and there is any remote possibility that the baby could be affected, better safe than sorry. Keep them gluten free to the best of your ability.

    What I don't understand is why introducing gluten seems to be looked at in the same way as "your baby might one day be able to see" or "one day he might be able to be exposed to direct sunlight".

    It is like there is some huge reward to be gained from baby being able to eat gluten, something worth taking a risk.

    If baby was blind and they wanted to do a risky operation that would enable him to see then this is a difficult question. He might be left paralyzed but if the operation is a success he will be able to see and play with the other kids. Thank goodness I don't have to make that decision.

    However: If you introduce gluten, baby can eat commercial foods and eat with the other kids but may develop some irreversible problems? Where is the risk/reward? It is almost like we are being told to introduce gluten to conform?

    As you say many of our own problems have developed over years... nothing you could monitor and say "Oh if I had stopped eating gluten then".

    I am probably a little literal at the moment: (As a result of accidental glutening by CODEX products) Perhaps I am missing something 'emotional' about this? I just don't see ANY reason why anyone would do this to a child with the genes?

  11. EXACTLY! There are lists and lists of possible problems that gluten can cause. It seems everyone reacts to it differently. They are not always sudden, noticable, or even obvious abdominal problems. Babies cannot tell us what they feel, we can't look inside their little brains to see if it's developing properly and/or if gluten is somehow affecting development........I just feel that when it's in the family and there is any remote possibility that the baby could be affected, better safe than sorry. Keep them gluten free to the best of your ability.

    What I don't understand is why introducing gluten seems to be looked at in the same way as "your baby might one day be able to see" or "one day he might be able to be exposed to direct sunlight".

    It is like there is some huge reward to be gained from baby being able to eat gluten, something worth taking a risk.

    If baby was blind and they wanted to do a risky operation that would enable him to see then this is a difficult question. He might be left paralyzed but if the operation is a success he will be able to see and play with the other kids. Thank goodness I don't have to make that decision.

    However: If you introduce gluten, baby can eat commercial foods and eat with the other kids but may develop some irreversible problems? Where is the risk/reward? It is almost like we are being told to introduce gluten to conform?

    As you say many of our own problems have developed over years... nothing you could monitor and say "Oh if I had stopped eating gluten then".

    I am probably a little literal at the moment: (As a result of accidental glutening by CODEX products) Perhaps I am missing something 'emotional' about this? I just don't see ANY reason why anyone would do this to a child with the genes?

  12. I can sympathize yet offer little in advice.

    Each of my joints seems to take in in turn ... the trigger has been walking along a smooth sidewalk! That was it for my ankle, no stress, I as just out walking in sensible shoes on a smooth sidewalk - result 2 weeks of agony and not being able to walk. Same thing for my knees and neck ...

    Currently my neck is killing me, I just woke up n the night like this. All my muscles along the trapeziums are knotted sympathetically, It cracks and grinds because of this and I am getting to the end of my patience. It has been like this and getting worse now for 2 years. My current neck problem (its happened before) is now going on 3 weeks. It was feeling much better until I played with my baby yesterday!

    This is what is really annoying me, I can't even play with my baby!

    I know my problem is connective tissue not muscle because for instance I can pinpoint the present point in my neck. The upper tendon on the lavator scapula is the exact point ...

    My elbows are also sore to touch ... sore as in they hurt if I rest them on a pillow sometimes.

    "Thankfully I am more or less ambidextrous." Funny, I keep telling myself the same thing. My elbows have caused me to keep switching hands and my signature is completely different from left to right. I usually write left handed (since age 5 when I broke my collar bone) because computer mice tend to be placed on the right ... but lately I have moved the mouse to the other side and started writing right handed.

  13. I do agree with the pp who said it is a personal decison and I am not pushing my view onto anyone but the thing I keep coming back to is the thought: is avoiding gluten really going to do any harm? I haven't seen any research saying that a gluten free diet has ever harmed anyone. Just my two cents.

    I think that sums it up for me.

    I really just don't understand why anyone would introduce it deliberately if they knew the baby will sooner or later develop celiac disease. It's not like baby can't see or hear, it's just avoiding a type of food that many cultures managed without.

    On the other hand I guess there is also a case for developing some sort of immunity? I really don't know ...

    As I said above, unless we test babies and then retest them every 5 years how can anyone say if it will cause an auto-immune reaction in 25 or 30 years?

    I'm interested to see the research from Fasano but he has been rather slow releasing research in the past. Not a personal criticism of him, more I guess he is going to be criticized widely from the food industry who will pull out all the stops to try and discredit the research.

    Several other factor's should IMHO be considered.

    Development of the child including non-reversible problems such as under developed spleen.

    Neurological problems, specifically neuro-developmental disorders such as Autism spectrum.

    A question which will not be answered for a long time is if transglutamise gluten reaction actually causes autism spectrum 'disorders'. Many parents of autistic children report good response to a gluten-free/CF diet and autism is a neuro developmental disorder. Many of us with autism spectrum tendencies (I really don't like using the word disorder) find we become far 'worse' (another bad word) when glutened.

    This is really just a start? What else might be caused or triggered?

    We just need to look through the posts here: Does joint pain go away after being gluten-free? What about the nebulous brain fog etc.

    The question I am asking is what if we never had to have these problems that often do not go away once developed?

    What if the development phase of a babies brain can be adversely affected, what if he never develops a normal spleen but could have done ...

  14. In my particular case, I was trying to provide a differing opinion as to why some people don't help. It was met by one constructive post, and then an attack on my character. .....

    One thing I have found, though, is that getting upset with the people who don't understand, or don't want to understand, is a poor way to get them to change. This goes for all walks of life. I deal with people that can't grasp some of the simplest things about our profession, but getting mad at them doesn't help.

    You inadvertently pulled a few strings.

    For quite a few reasons one of the most traumatic experiences many of us have and do face is friends and relatives who refuse to understand, don't want to understand or can be plain nasty. (often a combination)

    Quite often that friend or relative is in denial ... they have problems but refuse to admit them.

    It can be extremely traumatic because one side is convincing themselves' eating wheat cannot cause those problems and moreover they often go to incredible lengths to prove it.

    Sometimes they think we are tricking ourselves, sometimes the doctors are tricking us ... and sometimes they go to the lengths of trying to prove we are making it all up by deliberately poisoning us!

    I am usually quite assertive but as someone else remarked I suddenly become non very non-assertive over my celiac disease.

    I am frankly sick and tired of saying no ... but there is something else as well. I am not trying to draw attention, quite the opposite ... I just don't want to keep being put into situations where I either have to keep saying no I can't have one sandwich .. or one crumb...

    My mother was one of the unbelievers ... and like they say "be careful what you wish for, it might come true!".

    She would promise etc. and yet she would sneak in wheat products "to prove to me" or "because I was just trying to get attention". (I was nearly 30 at the time)

    As I said, those that protest-eth the most often have reason: A few years later my mother was getting worse and worse problems but of course she wouldn't believe me. Indeed, it was everything BUT wheat ... but I eventually tricked her into getting a celiac test. As I said, be careful what you wish for!

    You probably guessed it came back positive and you would think that would be the end of it and for a while it was.

    She actually did apologize and eventually got a lot better and said she was so sorry to have tried to trick me into eating gluten and now she knew how bad I felt and ....

    Great until about 3-4 yrs ago .. and my mom has decided she can eat the CODEX gluten-free, because her doctor told her. I know I cant eat it and I know she can't (When you visit you can tell but I'll not go into detail)

    Any prizes for guessing what she did next?

    She fed it to me and lied!

    I visited for a week and got sicker each day... eventually (between toilet breaks) I went through the bins and found the packets she had thrown out (keeping only the transparent inner packets).

    She had fed me the stuff 3 times a day... even when I didn't want 'bread', methodically.

    Why would she do that? I believe she wants to justify eating it herself ... she knows it makes her sick but she won't admit it and I keep telling her why take the risk.... so she deliberately poisoned me!

    Many of us have been through very traumatic experiences with friends and family. This is my most extreme case but I think it might illustrate just how bad you feel when a close relative or friend simply refuses to believe you.

    I'm sure my mother has a different story ... I'm sure she will say she didn't realize, that she didn't read the labels, that aliens came in the night and put the discarded packets in her bin???? (the last one might be stretching it) ...

    Not everyone does it for evil intent but some do ... when someone does then it is a very traumatic thing and the closer the person is, the more traumatic.

  15. If processed sugar is a problem then you might have some infection feeding off it.

    Sugar obviously isn't good for anyone BUT a lot of starches and carbs break into sugars and ultimately glycogen is a sugar. In other words it is really unlikely YOU are reacting to the sugar (in that way) so much as something else like a parasite or yeast? The starches and hence sugars in corn, rice etc. take longer to digest before they are broken down and are probably in your intestines whereas raw sugar is straight to the stomach... so any parasite in your stomach gets a boost??

    It is probably worth seeing a doctor as whatever it is is likely to be minor and treatable if really feeling quite bad!

  16. Hi, I have gotten my EnteroLab results back. Recently there was an article at the New York Times (Can't find it now) about how inaccurate testing blood for antibodies to different foods is for determining food "allergies." Apparently skin tests are more accurate. The New York Times article had said that the problem with testing for antibodies in the blood is that sometimes the immune system will mistake one food (protein) for another that it is sensitive to, thereby producing antibodies to a food it is not sensitive to. This made me wonder, since EnteroLab also tests for antibodies, are there potential problems with their tests being inaccurate also. I know EnteroLab says that their tests are a lot more refined and sensitive than blood tests (they catch these problems before they even get in the blood, etc.), but does that just mean they do a better job making some of the same mistakes as the blood tests? Or does the immune system make fewer errors in the intestine then in the blood for some reason?

    I think you will find the NYT article refers to IgE mediated allergies.

  17. I'm going to Mexico in Febuary, and the resort is all inclusive. Since food is free how do I make sure I don't get glutened or would any of you even risk it?

    There is usually a option which is cooked to order. Breakfast you can usually get eggs done as you like.

    The biggest risk is the tortilla, at least if they are real corn ones you are OK but the tourist places often use fake (American style) ones.

    Lunch/Dinner you can often get plain BBQ meat or fish. The quality of food is often pretty OK, even on the all inclusive.

    It is always a risk though ... I thought I was OK with the bacon and then found it was cooked on bread.

    Most of the bean dishes and salads are likely to be OK except for CC ... I always think the lowest risk is being first at breakfast ... still I got caught out with the breakfast so that was that for a week and after this I was staying in non-inclusive hotels.

  18. A quick couple things:

    Food combining is not magic and means nothing if you are not in a caloric deficit.

    You have to be in a caloric deficit to lose fat (using more calories than you take in) that is the most important component.

    Exactly what I would have said until I saw it! I am one of the most cynical people here and I very very rarely endorse anything I don't understand HOWEVER .. I have seen this work.

    When it was introduced to me (by the wife of a friend with Chrons') I was very very skeptical. I was also as ill as many of us get ... and willing to try anything having been failed by conventional medicine.

    50mg of ranitidine 4x a day for life or give it a go : my reflux was so bad I had problems breathing ...

    I will say that if it is played with it doesn't work (or anything like as well) and all the cases I have seen it has been extremely effective have been done strictly.

    I have done food combining whilst eating decent portions and decent calories and reasonable amounts of fats and seen very good and more importantly maintainable results.

    Most importantly is the difference over extreme calorie controlled diets where actually getting sufficient vitamins and trace elements each day is either impossible or next to impossible.

    Why does it work? I wish I knew... but I have seen it work.

    Digestion and ana/cata-bolic processes are more complex than calories consumed and calories burned in exersize.

    There are several medical explanations all of which are flawed. It has been said that people naturally don't eat as much or healthier and therefore calories are reduced. This is blatantly false as I know for a fact what my calorific intake has been.

    The digestive process of MCT's shows that calories in/out is a false assumption. The calorific value from combustion of long-chain and medium chain is not significantly different whereas the adsorbtion (direct from the GI tract) shows that the human body utilises the calories differently.

    The relevance of the above being the very incomplete knowledge of the human digestive system.

    I have seen it work BUT only when adhered to strictly. It is also very compatible with a gluten-free diet, it doesn't rely on a leaf of lettuce on a rye cracker!

    Calorie controlled diets can and do work... however they often work temporarily and regress and/or fail to provide sufficient nutrients. They can lead to a famine response when overdone and the ability of an individual to determine their BMR is pretty unlikely as this will doubtless change as they lose weight or exersize more.


    Heart rate is a great tool. However, there is no magic "fat burning zone." That is a myth that just won't die. You will use a combination of substrates to fuel your exercise at all levels of exertion. It's the proportion of energy systems that change.You may not be able to go as long at a higher heart rate, and then are not getting the same burn. The bottom line is total calories burned at the end of the day. (I'd guess that Jennifer was probably going longer at the lower heart rate and thus burning a higher total # of calories) You can go longer at a lower intensity, or shorter at a higher intensity. For most a bit of both is good. But again-calorie deficit is king.

    Jennifer didn't say she was going longer at the lower heart rate but that she was aiming to exersize for (at least) 15 minutes. My advice was twice as long (and if that means going slower then go slower).

  19. Some people will not and never will 'get it'.

    Quite a few people here have the same problem and the best answer I can give is "At least you choose your friends".

    I lost some of my oldest friends because they just couldn't (or wouldn't) get it.

    >>Someone on this forum coined the term "rat poison" for gluten,

    That was probably me: However Rat poisons are usually a lot less bad for you than gluten.

    Strychnine used to be given as a medical drug where the lethal dose was about 32mg and under 5mg considered safe.

    My father takes more Warfarin (a strychnine deriviative) a day than I could eat gluten in a weak...

  20. Frankly, no idea! I don't think anyone does.

    Ollie is 4 months and doing really well. Mom who is not celiac has been gluten-free through breast feeding and we have yet to get his genes tested.

    He was originally going to be born in St. Thomas' hospital in London (possibly the foremost paediatric unit in the UK) but after we moved house this was impractical. While he was at St. Thomas' we had a scan and they were doing a study on diet and introduction of gluten. It seemed quite good, we would have got free genetic screening etc. but the study was aiming to introduce gluten at 3 months.

    When I tried to find out more I was completely blocked, they refused to tell me WHO was financing the study. I rather suspect this is one of the baby food manufacturers, the same kind that make formula from bits of fish and other allergens like soya.(Not to mention transfats etc.)


    ... anyway .. who to trust? I really don't think the research has been done nor can be done in less than 30 years.

    If they started now then the study would need to retest in 30 years time and see what the incidence rate of celiac disease was then.

  21. Hello everyone,

    Is there a vitamin or something of that nature that would explain an out of body sensation? This is during awake time not associated with sleeping.

    Thanks RA

    Depending on how you define 'out of body' I get a certain amount of this when glutened.

    It's not like the TV/film 'experience' so much as a feeling I am watching myself and steering by a remote control with flaky batteries!

    I often say things I don't mean, or more accurately things I do mean but shouldn't say ... and I know I shouldn't and try and stop myself but I just don't respond ...

    When in this state, especially within group I often feel like I am almost sitting beside myself and almost watching myself.

    Hope that helps?

  22. Several points:

    >>I'm thinking that if I can do at least 15 min. on my exercise bike every day

    Any less than 20 mins with your heart rate high enough and you will not see much in terms of weight loss.

    15 mins is better than nothing but 30 mins every second day would be more effective and 60 mins even better.

    Gliadin is a protein found inside of gluten .. what you are describing in tests is liely your anti-gliadin specific antibodies. IgA and IgG. As a explanation if you get flu your body produces 'anti-flu' anto bodies ...

    If these are elevated then the chance is you are still getting gliadin in your diet although they do take time to reduce just like after a real viral or bacterial infection.

    If you have elevated antibodies then you have celiac disease by one definition. A biopsy is a different definition... as an example if a alcoholic went to the Dr and asked for help, would the Dr refuse to admit the alcoholic had a problem if a liver biopsy came back negative for cirrhosis?

    Humans should not produce antibodies against foods... it really doesn't matter much what you call it so much as how your body reacts.

    However if your biopsy was negative then your villi should be OK and you should be digesting food properly and adsorbing the nutrients. If however your biopsy was messed up then you could be maladsorbing which would explain your constant hunger.

    Dealing with hunger is tough but not impossible. This might sound horribly simple but just weigh out sufficient calories for your BMR and ignore it. Various appetite suppressants exist but if you are craving as badly as you say then these will not make a HUGE difference unless you start on potentially harmful stuff (amphetamines work... they just screw you up more).

    I don't want to trivialise this or say it will be easy but you are just going to have to decide and do it!

    The more exersize you do the less you will think about eating...

    Stop even going to resto's.... especially when you can't control portions.

    Don't eat moderate amounts of processed food, eat none!

    Frankly (and I speak from experience) what worked when you were young doesn't always work later in life!

    When you are young eating sensibly and moderately works, especially with exersize but as we get older two things happen:

    1/ Our definition of 'moderate' tends to drift

    2/ We need to work much harder to get the same effect...

    The two of these together recreate the "The snow was whiter when I was young" quite easily and it is simple to fool ourselves.

    When I was 16-21 I ran at least 10 miles a day and worked out 5-6 times a week on top. I didn't include cycling 20 miles each way to school as actual exersize or the 3 miles each way I ran to my karate club 5-6 times a week.

    Back then it seemed 'sensible' now it sounds unbelievable yet I did it.

    When I was 21 I ate NO processed foods at all, no ketchup etc. Now I say I eat no processed foods but ... well I mainly eat no processed foods if I am honest!

    When I was 18-26 I weighed 137.5 lbs (I never varied more than 1/2 lb my waist was under 26") At 27-28 I went from 137.5 to 189 lbs in a few months (waist was 38"). (This was just prior to diagnosis). I still ate healthily and I still ate moderately, just not quite so healthy and quite so moderate but by any normal metric it was healthy.

    At 28 I was asked to take part in a raft race with my old Karate club ... I was so embarrassed, I used to be the person who ran to Karate then took the rest of the kick boxers running, did the training then ran home!

    I tried moderate ... I tried 1hr a day exersize and the weight hardly budged.

    Then I went either crazy or like I had been when I was healthy .... I couldn't run 10 miles, I couldn't run one mile but I did ride an exersize bike 1hr a day and row on a machine for 1hr. I cut out ALL processed food, reduced my calorie intake and as I lost weight started running to the gym.

    The moderate stuff that had kept my weight down for years no longer worked. When I started I used to vomit every time I used the rowing machine... my 1hr started off in 10 mins then 5 mins rest then 10 mins etc. until after a few weeks it was one hour at 120 strokes/min without stopping (except to vomit).

    Since then I have been moderately successful keeping off the weight and I now eat moderately. I'm probably 150-155lbs but then I'm 42 in a few weeks! Waist is about 30" or at least 30" jeans fit me!

    Every so often the 30" jeans will get tight and I have to fight it off. Once it starts to go on nothing moderate works... I always have to get tough on myself and eat no processed food and no empty calories and exersize like hell!

    As others have said food combining (or more accurately not combining) is not only good for loosing weight but also quite gluten friendly and on top of that easy on the stomach ... your hunger could well be one thing you are missing in your diet OR it could be one thing you are not adsorbing or your body does not process properly.

    Sorry to be blunt but I think you need to take a step back...

    You knew your body, you knew what worked ... sorry but the rules have obviously changed and you need to accept that. If you are half as stubborn as me that will be hard!

    Sorry if this sounds tough ... I'm not the best at sugar coating :D

    You are on the right track but I think you need to realize you and your body have changed and you need to address that.

  23. Unfortunately I can't comment on American Peirogi but I expect these have a passing similarity to slavic peirogi in the same way American Pizza looks similar to Italian Pizza.

    Anyway: In Poland Peirogi are huge .. not in size but cultural cuisine.

    The relationship with Italian Ravioli is best described as Ravioli are stuffed pasta and Peirogi are stuffed dumplings.

    In Poland at least there are many types, indeed Krakow (about 60 miles from where I am posting from) have a annual festival.

    The Peirogi being described here are known as Russian peirogi, these are smilar to Russian and Ukranian varenki.

    The cheese should be curd, not hard cheese like cheddar and the onions are usually pre-fried.

    Jewish pirogen are similar but usually closer to tortellini or ravioli than the dumpling texture of peirogi.

    Why does any of this matter?

    Well, if you want what you call peirogi then you need a different base pasta than what the polish call peirogi ...

    Just like pasta creating the lighter (less doughy) Jewish ones (which I guess are closer to the American Peirogi) will need a lighter flour ....

    The Polish ones can be made quite easily from 50/50 buckwheat and rice flour ... this is the same base I use for polish noodles for soup.

    The result is somewhat chewier than the Jewish version or Italian ravioli.

    You can get away without egg if you are egg free but salt and the 50/50 flour mixed to a dough works.

    For Christmas two types are served in Poland:

    Sauerkraut and dried mushrooms filling for a general one

    A special one filled with dried wild mushrooms (and a little onion, breadcrumbs and butter) is served in Poland (incl. the historical three polands), The Ukraine and Russia. This is served with a clear borscht soup.

  24. gfp,

    You're correct of course.....my original point in giving that as a reference was that it was one of the few studies I had seen that quoted the "low" frequency of celiac and lupus occuring in the same person. But, as you've pointed out, in this paper from the Journal of Clinical Gastroenterology, they *are* apparently trying to slant things to make it appear that celiac is not autoimmune. Which is ludicrous.

    It's possible that the incidence of celiac and lupus occurring in the same person is much higher than reported, but because people see specialists for these things, they only talk to the rheumy about lupus and they only talk to the gastro about celiac, the rheumy and the gastro don't really care about the other illnesses that lie beyond their purview.....??

    What do you think?


    There's actually plenty of scientific evidence to back up a link between celiac and many other autoimmune disorders. Celiac is known to produce high levels of the cytokine, zonulin, which increases the permeability of cell walls.

    This can actually cause so-called "leaky gut" syndrome, where molecules that belong ONLY in the intestines manage to sneak through into the blood stream, which in turn causes the immune system to go into high gear and frantically start manufacturing all sorts of antibodies to combat the invaders. Current theory is that this can lead to some sort of "confusion" on the part of the immune system, causing various autoimmune diseases, where the immune system is attacking the body's own organs (mistaken identity?).

    You can read all about at this link (given also in an earlier post of mine in this same thread):


    Best wishes,


    One of our family friends is a GI; he is one of the nicest guys you could hope to meet. After the Tsunami he gave up his (well paid consultancy) job and flew to Sri Lanka ... so he is in no way simply a self interested GI ...

    However: Trying to get him to acknowledge the AI and neuro parts of celiac disease is like talking to a blank wall.

    He sees celiac disease as GI and that is about it!

    My considered opinion of Medical Doctors on the whole is that they have the science removed when they start med school. Perhaps we have a gland somewhere and young Med Students get it taken out?

    More seriously though: this is the difference between science and medicine.

    MD's are told to believe clinical trials and ONLY clinical trials ...the whole science part seems to completely bypass them.

    It might be outstandingly obvious to a scientist that we are talking about a known AI gene sequence and HLA is one of the most completely studied of the human genome. It is even named so that we know what it does .. Human Leukocyte Antigen ...

    We know the markers for celiac disease (at least mostly) and we know what tests can be done to identify the antigens.

    It strikes me as incredible they did serology on the SLA and then threw away the blood before testing for IgA, IgG and the other well known markers???

    Instead of biopsy proven Y/N and SLA they could have had quantitative results ?? Is there a link between celiac disease antigens and development of SLA? Which ones?? Then we could look at some preventative measures instead of "Uh, more people with biopsy proven celiac disease get SLA than we thought".

    There is a certain amount of protectionism as well in my opinion and this is readily exploited.

    To be cynical the number of cases of celiac disease are increasing and this is a potential cash cow to someone. The GI's would prefer it to be them. If this is defined as a AI disease then this will not be them.

    As Fasano stated, this is a multi billion dollar business!

    The most distressing part for us is that scientific studies are buried.

    The UK Coeliac Society funds research but then buries the research not in it's interest. (specifically, its interest is not that of its members)

    The drug companies have little to no interest in something they cannot turn a profit on in the short term ...

    This leaves a few pure academic studies which are then ridiculed by the pharmaceutical companies and bodies of professionals who view it as not in their interest.

    The reason I post infrequently is because of a discussion on adoption of the WHO/FAO CODEX standard on gluten-free and the position of the GIG. Cynthia Kupper admitted that there was no evidence that CODE standard starch had no detrimental effect on celaics but wants to adopt it anyway. The 'evidence' is that the mortality and morbidity is not particularly worse in Europe (which already adopted the standard) than the US which has not.

    This ignores outright the differences in life expectancy between the US and European countries (where the US falls not only below the European countries but many third world ones too).

    Secondly it does not address the fact many Europeans get ill and so choose not to eat the CODEX <20ppm wheat starch.

    Thirdly it fails to consider that many European and especially UK coeliacs are also diagnosed with non specific IBS.

    Indeed the normal course of diagnosis for a confirmed coeliac in the UK who continues to have GI symptoms is to diagnose non-specific IBS.

    Fourthly, cause of death in celiacs is rarely attributed to celiac disease per-se. To take an extreme if celiac disease is a contributer to bowel cancer then cause of death is usually cancer; not celiac disease. Given the diversity of symptoms and complications however from other auto immune conditions I would have to ask how the mortality rates are linked to celiac disease.

    Lastly: Even if it's not a direct killer is it acceptable to make millions of people ill?

    It amazes me that the simple study of two groups of celaics and monitoring of markers and symptoms could actually give some hard scientific evidence not "mortality/morbidity is no higher in Europe".

    What really annoys me is this then takes away our choice. We cannot rely on a label saying gluten free: however back to the point, is this science?

    If it is then it on a grand scale involving potentially making millions sick in order to find if .. well they are sick?

    The biopsy itself is the next key: What makes the biopsy a gold standard (excepting history)?

    Regardless of the result of a biopsy what is the condition on someone who as a result of eating gluten has massively raised antigens permanently?

    To put this in context, what is the difference between celiac disease and SLE in terms of diagnosis?

    Well SLE has no known single markers yet it can be diagnosed on serology for different non-specific tests.

    My Aunt died of Lupus (SLE and contributing drug induced Lupus): Well, not exactly ... her immune system started rejecting her insulin so she died of diabetes although she slipped into a coma and her kidneys failed and ultimately she died of heart failure ??? I could stretch a point and say she died of undiagnosed celiac disease but that is conjecture.

    Still, we all die ... however why make it unpleasant and earlier than necessary?

    My aunt suffered GI symptoms her whole life ... my mother, her sister has celiac disease.

    Are they linked?

    Well my guess is if we are to find out we need to compare oranges with oranges, we cannot compare biopsy results with people claiming to be gluten-free with SLE ... regardless of the biopsy development (or not) of SLE needs to be monitored with serological markers for celiac disease and dietary compliance.

    Just my 2c, but then I'm not publishing the Journal of Clinical Gastroenterology ... and perhaps they would never publish since if I was to write it would not firmly place celiac disease as a GI only disease!