Gluten Intolerant - but not Coeliac x2

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herika, Jul 31, 1:08am
The following is taken from a newpaper article about Dr Rodney Ford:Ever wonder how gluten can cause such a wide array of symptoms in so many different people? Dr. Rodney Ford, a doctor from Christchurch who is known as “Doctor Gluten, ” just may have the answer – that gluten causes symptoms, in both celiac disease and non-celiac gluten sensitivity, by directly and indirectly injuring nerve networks that control various organs and systems in the body.
CD is considered a gastrointestinal disease whose symptoms are due to damage or malabsorption in the gut. But gluten can provoke significant ill health other than CD and symptoms “outside” the gut, such as the skin condition eczema and the nervous system disorder ataxia. The way gluten does its damage and leads to many different symptoms is because it interferes with the body’s neural networks, proposes Dr. Ford...
herika, Jul 31, 1:11am
... a pediatric and allergy specialist with more than twenty-five years of experience treating people with gluten-related illness. His article “The Gluten Syndrome: A Neurological Disease” that explains this theory recently appeared in an early e-edition of Medical Hypothesis. He wrote:
Evidence points to the nervous system as the prime site of gluten damage...
herika, Jul 31, 1:13am
... This theory is attractive because it gives a unifying answer that explains the following conundrums: the mechanism of the non-gut symptoms of celiac disease; the behaviour disturbances of gluten reactions; the psychiatric and personality disorders; the neurological symptoms; the autonomic system disturbances; why such small amounts of gluten can cause such major reactions by the amplification effect of the nervous system (not dependent on any gut damage); and why gluten can create such a diverse range of symptoms, because any agent that causes widespread neurological harm (think of multiple sclerosis and Syphilis) can generate almost any array of symptoms. There is a lot more information on this site.
herika, Jul 31, 1:18am
Why Dr Ford says above comes from : The gluten syndrome: A neurological disease. Medical Hypothesis (2009), doi:10. 1016/j. mehy. 2009. 03. 037-
. :)
herika, Jul 31, 1:25am
I had a different lunch today I had a half used packet of Erawan Rice Paper sheets and thought I may as well do something with them. I got all the ingredients I wanted to use ready, tomato, cheese, spring onion, pineapple etc and then lay one sheet of the rice paper on a dinner plate, ran warm water over it and when it was soft carefully and slowly tilted the plate onto its side holding the top edge of the sheet. The water ran off and the rice paper was ready to fill, roll and eat. You can transfer to a clean tea towel after soaking but I find that tricky. These can be used to wrap all sorts of fillings and can also be deep fried. Its quite nice to have something different for a change. :)
bodieblue, Jul 31, 5:16am
I have just been interested to find your thread. At present I am undergoing tests to try and sort out my ongoing 'tummy' problems. A year ago similar tests ruled out coeliac disease (or anything sinister) and here I am again with the same symptoms. I strongly suspect gluten intolerance and am wondering about lactose as well. Herika, how long have you known of your intolerance? Have you used anyone (dietician or suchlike) to work out a suitable diet or just worked it out for yourself through trial and error? At this stage I'm wondering what the heck WILL agree with my stomach and still maintain a healthy diet once I have got my system settled again with the use of losec!
herika, Jul 31, 8:37am
Hi bodieblue I started having problems in my 20's and for 5 years doctors kept telling me I had IBS. I tried to help myself work it out for 2 years and did improve from time to time but in the end I went to a Medical Herbalist who diagnosed my gluten problem at my first visit and put me on a gluten free diet. 3 days later I noticed a marked improvement. The rest I worked out for myself. Check out the thread *Gluten free hints and tips*. I figured out I couldnt have casein (cows milk) and vege gums among other things over the next few years. I basically have it under control now. There is so much conflicting information around it does make it difficult. I will bump up the other thread for you :)
bodieblue, Jul 31, 9:46am
Thanks for that Herika, I shall look through that thread and no doubt gain some useful info and hints in order to 'help my tummy troubles'.
herika, Aug 1, 6:54am
MSG can be a big problem watch labels for "glutamate". These are flavour enhancers and they have the additive numbes: 620, 621, 622, 623, 624 and 625. MSG is produced by a fermentation process using starch, sugar from corn or molasses from sugar cane or beets. The starch could be from wheat and the info on the label isnt going to disclose that.
cathnjim, Aug 1, 9:10pm
I thought this was for recipies Why do you need to separate one lot of gluten free people from another? We are all in the same boat, gluten free. We all feel better gluten free. And Herika how do you know you do not have coeliac? From what I understand the blood testing is not 100% accurate. Please don't have an us and them when we should be working together on recipes! ! ! If you want to discuss the ins and outs of other components of gf, which does not include recipes, why not go in the general section? Sorry, but I hardly ever find any recipes on the gf threads anymore.
herika, Aug 2, 2:06am
hi cathy dont be sorry, you are entitled to your opinion. Unfortunately not all gluten intolerant people are the same. Some can have cows milk others cant, some can tolerate gums some cant and the list goes on. The reason I started this thread was so it could be a helpful one for people who are gluten intolerant and not Coeliacs as the needs can be quite different, as said above there are lots of foods Coeliacs can have that non Coeliacs cant. A personintolerant/sensitive to gluten has a different reaction to what aCoeliac does and its good for non Coeliacs to be able to share their experiences. :)
melford, Aug 2, 10:47pm
herika - what a load of rubbish! Gluten intolerant people are gluten intolerant - end of! I would suggest that coeliacs are far more intolerant to gluten than non tolerant gluten free people as it actually does damage to their intestines. You are far too extreme in your views. In my opinion you need expert help instead of condemning everything we eat. Do you ever stop to think that you may be doing more harm than good with your posts on here in view of the fact that mnay newly diagnosed gluten intolerant people are already confused about what they can or can't eat. You have no medical background, have not been diagnosed ( apart from being seen by a medical herbalist)yet you offer advice on here as being the gospel
herika, Aug 3, 1:18am
If Coeliacs are more intolerant to gluten than non-Coeliacs why is it they say Coeliacs can handle low gluten foods? Most of the non-Coeliac people I know cannot handle even small amounts of gluten and even contamination is a problem.
herika, Aug 3, 6:37pm
I know its difficult to understand and it took me years to come to grips with it. I was under doctors for years (see my post 32)who couldnt work out what was wrong and in the end came up with IBS. If it hadnt been for the Medical Herbalist I dont know what I would have done. She at least put me on the right track so I could do something about it. (I dont give out all my personal info on here). Perhaps if Coeliacs referred to themselves as having Gluten Entropy and NCGI referred to themselves as having a gluten sensitivity it might help with the confusion? One of the main problems for NCGI people is recipes, such as are in Coeliac Society ones, as they can contain ingredients NCGI people cant have. Anyway, Im hoping to help NCGI with this thread but if any Coeliacs get some help from it then thats great too :)
cathnjim, Aug 3, 6:45pm
why should I call myself something different when the word coeliac has been around for centuries. If I did call myself something different, I would get blank looks! ! ! Who would then have the coeliac name. The guy who named coeliac disease was ahead of his time, as it wasn't until the late forties that they actually knew what caused coeliac. I give up Herika, you can keep your threads.
melford, Aug 3, 10:49pm
herika - so you have irritable bowel syndrome I suggest you get a second opinion from a specialist. You still continue to "generalise" because of your condition. You place all non gluten people in your boat when in fact many people have varying degrees of intolerance (excluding coeliacs). You may in fact be doing more damage to your health (despite feeling better at the moment)following a diet such as yours. You need close monitoring by a specialist and further explorative procedures.
herika, Aug 4, 2:05am
melford how can I have IBS when my system is working normally, which it has been for a number of years now. Irritable bowel is when a person is troubled by diarrhoea at one time then constipated another and this continues. I have food intolerances/sensitivities and that is my problem, but as long as I dont eat why upsets me, Im fine. I do not generalise, I accept everyone is different - see my post 36. I disagree with you - I think Coeliacs have varying degrees of problems with gluten too (as I have read in peoples posts). I am very healthy, all my blood tests and examinations are not only good but very good, they cant find anything wrong with me (except I do have a problem with high blood pressure). Perhaps you need to do some reading up on the differences between Coeliac Disease and gluten sensitivity :)
melford, Aug 4, 2:51am
herika - I read your previous post that the Dr diagnosed you as having irritablebowel syndrome so are you saying you disagree and you have put yourself on a gluten free diet? I have never ever heard of anybody that has to be as extreme almost to the point of being paranoid about eating any minutest amount of gluten as you do. Anyway, that is your choice and if you are better now then good for you and I'll leave it at that.
herika, Aug 4, 2:53am
The following is taken from www.ntolerance.co.nz/ The concept of adverse reactions to gluten (WITHOUT COELIACDISEASE) has been controversial over the last decade. This has changed. It concerns: The concept of gluten sensitivity has previously met with stubborn resistance from majority of medical practitioners.
Paediatricians and General Practitioners now endorse gluten sensitivity on their new website Dr Rodney Ford states that the gluten-sensitivity (or gluten syndrome) diagnosis has now reached official status. For over a decade he has been researching and promoting the concept of gluten sensitivity. Up until now, this idea has been met with stubborn resistance from majority of medical practitioners. But the tide has turned. Overwhelming clinical evidence of gluten sensitivity has led to the adoption of the “gluten-sensitive diagnosis” by the Department of Paediatrics, Christchurch Hospital.
herika, Aug 4, 2:56am
other sites (NZ ones) that say Coeliacs is different to gluten sensitivity:www.glutenfreekiwi.com/gluten-intolerance.html
So What Is Gluten Intolerance!
Well it is a type of food allergy, to gluten, a small particle found in wheat, what causes a number of allergies and symptoms, there are different degrees of gluten intolerance. GLUTEN INTOLERANCE DIFFERS TO COELIAC DISEASE. Some of the sideeffects of eating gluten are far from plesant...
herika, Aug 4, 3:00am
www.glutensensitive.com/ and www.coliac.com/ which is about Dr Rodney Fords book: Are You Gluten Sensitive? and there are lots more :)
herika, Aug 5, 4:55am
Dr Ford says that this change of stance will come as a great relief to the many gluten-sensitive sufferers, who previously had been given no support for taking the gluten-free option. He says that a lot more research is needed to better understand how gluten is affecting so many people. His research has found that about one in ten people have this sort of adverse reaction to gluten. He is currently conducting a series of double blind challenges to better document the extent of gluten sensitivity children. Hopefully this thread will inform and help all NCGI people :)
herika, Aug 5, 7:19pm
I copied this info about allergies off a website: Type 1 food allergies result in high levels of IgE antibodies in the blood so they are easily diagnosed by tests. Many doctors consider IgE mediated allergies to be the only real allergies, yet most food allergies are not Ige mediated. Only 3- 5 % of children and 1-2 % of adults are estimated to be affected by Type l food allergies. Type ll: Though not considered a true allergy by more conservative doctors, a Type ll reaction still results in high levels of antibodies, usually IgA, IgG and IgM, as well as the typical inflammatory reactions.
Type lll: Delayed reactions often go unrecognized because the symptoms are not usually obvious, and may occur days after the food is eaten. Also, since they do not involve IgE antibodies, delayed allergy reactions to not show up on standard skin tests or some blood tests. Instead, they manifest as clusters of physical, behavioral and learning symptoms that affect several body systems at once. Type lll allergies are for this reason often called 'hidden' allergies...
herika, Aug 5, 7:21pm
... A person with Type lll food allergies can suffer from recurring breathlessness, mucousy throat, sporadic hyperactivity and emotional swings, chronic stuffy nose, and flu-like symptoms. For another person, symptoms can include headaches, itchy eyes, stomach pains, depression, fatigue, sleep problems, and swollen lymph nodes.
These delayed reaction patterns of food allergy are difficult to diagnose. Yet health practitioners believe that they account for most food allergies, especially in children. In my opinion, any undefined pattern of illness that involves different symptoms and different body symptoms should be taken as a likely sign of food allergy until proven otherwise. I found that article very interesting and learnt some new things, hope it helps others :)
herika, Aug 5, 7:22pm
The article in my last 2 posts finishes off: Given the prevalence of type lll food allergies, other testing methods are called for. The most common non-standard test is the Rotation Diet. Common allergenic foods and suspected food allergens are eliminated from the diet for 4-7 days, then reintroduced. When the body is given a chance to clear of food allergens, symptoms will usually subside or disappear. By reintroducing the food again, you cause symptoms to reappear, allowing you to identify just what foods affect you. :)