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About fergusminto

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  1. I see a number of fellow sufferers have already contacted you but just to add to what they have said, I was diagnosed 6 years ago and over that period I have become intolerant to: All dairy, Eggs, Soya, alcohol, sulhites (in fact all chemical preservatives which means I cannot eat processed ham, bacon etc) and a few other silly ones! I now make my own bacon and cook evrything from basic ingredients - no "carry-outs" or junk food at all. Difficulty eating out but you soon get to know those establishments whom you can tell exactly what you want as it is not on the menu! Symptoms of eating any of these include headaches, tiredness, irritability and muscle pain especially in the neck. It does, however, more positively, make you more aware and interested in good food and how you can make your own instead of buying in ready-processed food. One other point - I am no lover of processed "Gluten-Free" food you see so much of advertised in Coeliac Association newsletters and websites and stores - have a good look at what is in them! Full of sugar and stuff you may never have heard of. Hope this helps.
  2. Do not despair! You are not the only one in the US with this problem and believe me there are plenty of us in the UK. I was diagnosed 6 years ago and immediately went onto a gluten-free diet. However, it sone became obvious to me at least (not necessarily to Doctors) that there is much more to celiac disease than just a gluten problem. It has taken me a long time to realise that I am also intolerant to Oats, all Dairy, Eggs, Soya (flthy stuff) and now sulphites found in wines and most other low alcohol drinks. Just recently I have my doubts about alcohol in general but that is a case still to be proven. My advice is cook everything from scratch - no processed meals - and keep a diary for a few weeks on what you are eating and any reactions. Good luck.
  3. Firstly, don’t despair. There are many of us out there with similar probs and some of us have managed to control them. Doctors/nutritionists, generally, do not understand celiac disease and fail to identify the link between celiac disease and food intolerances. celiac disease damages the gut. I was diagnosed 6 years ago and have learned the hard way just like your husband is doing. I suffered from tiredness, fatigue, headaches, weight loss and a feeling of “down” every morning. Through intolerance tests I found I was intolerant to All dairy, eggs (especially whites), chocolate (no matter how pure) and soya (filthy stuff). Even stopped buying stock cubes as we keep all bones and boil them up for stock. As a result I take NO processed foods at all, cooking from scratch just as we used to do when I was a kid (now 65). Alcohol gives me terrible headaches so I am also “dry” which is probably the most difficult thing socially. I do go to a large number of meetings with business folk but I have to bring my own food and you soon find out that many people have similar problems. Now gaining weight and feeling much better now I know really what to avoid. (btw I am food trained so even more frustrating!). Just come off another bad week. I get EnerG bread (Seattle, and I live in Scotland!) but the pharmacist had to swop to another brand – had soya in it (only a trace) – made me feel awful. Drank plenty of water to clear system. For further good info try the SCD site – I got a lot of good info there. Best of luck – just plenty of good basic home cooked food, meat, veg and fruit. Dairy, eggs and any soya are common problems.
  4. Hi BarryC. Not widely known that wine can/does contain gluten. My experienced immunologist informed me that it can be introduced in two ways. Firstly, if the wine is of the "oaked " variety it may have been stored in casks that have been treated with flour and water in irder to seal any potential leaks. Secondly wine is more often than not "fined". This is a process for clearing the cloudy base wine by adding "Finings" which is a mixture of egg white, ground fish bones and wheat glutenate. This is not fully removed from the wine before being bottled and some gluten is almost definitely left in the final product. I am catering trained and this was a surprise to me. If you are very sensitive as I am thus will pos give you headaches after one or two glasses.
  5. Yes there is more to gluten intolerence and Coeliac than meets the eye. I was dignosed with celiac disease 6 years ago. A first the diet went ok but then things started to go wrong about 4 years ago. Too many intolerences building up and I started losing weight and became increasingly tired. Intolerence tests and experience indicated that I was intolerent to all dairy, eggs, soya, oats, and many other things. Was 154 lbs now 133. Now on GAPS diet which is particularly boring - no carbs at all and I live on protein, vegetables and fruit! celiac disease has caused something to happen in my gut so that I am not digesting properly. Had a SIBO breath test (inconclusive), also a scan (no results yet), checked for paracites (no result yet) and have been referred to immunology. My advice is not to go vegan. You are restricted enough as it is. In fact eat some meat/fish as you will need the protein and, you won't like this, don't eat out as you cannot trust any kitchen except your own - I know as I have a degree in Hotel and Catering. Your gut must be inflamed. My Nutritionist (a highly competent doctor) has told me no grains at all, no carbs and use plenty of coconut - milk, oil and cream. Very nice in fact! And ghee which is "clarified" fresh butter. Put unsalted butter into a pan and under low heat skim off the fat as it rises to the top. You should finish nup with a pure golden liquid. Use that in place of oils. Animal fats are also "good" for you. Stay clear of "vegetable" oil which often contains soya but is not disclosed on pakaging. Use Olive oils for salads only. This kind of diet will help to cure the inflammation but can take some time. See a good nutritionist. This won't be easy bu there are many of us out there with similar problems. In fact we are breaking new ground!
  6. I sympathise with what you are going through but you are not alone. I was diagnosed with celiac disease 5 years ago after decades of fatigue but soon found out that celiac disease does more damage to your gut that UK NHS doctors realise. Just fired my UK NHS doc and gone private. Intolerences abound and make me tired and rather depressed so now on a GAPS diet, no carbs, no dairy, no eggs, no soya etc - really a protein, fat, veg and fruit diet and like you cannot trust eating out. This diet makes you very tired as no carbs for medium term energy. Cheated two weeks ago with a curry and white rice and what a difference! New NHS Doc is referring me to a "real" specialist. There are two ways to treat this - the first is long term GAPS diet with nutrient supplements, for year or year and a half (been on it now since mid December 2013). The second is what I call the "nuclear" strategy - strong anti-biotics to kill off all bacteria especially those in my small intestine (SIBO) and them taking pro-biotics. Latter is not guaranteed to work long term but I am willing to give it a try. Luckily I am catering trained so can cope for the most part. Just waiting, like you, for a proper diagnosis/prognosis/treatment. Best of luck tomorrow. Bruce
  7. Hi Llabrword. Welcome to the site. I joined about 4 weeks ago for the same reasons as you - confusion. I have just replied to Bartful in another string of this subject which I think may be of help to you. There are number of items on your list to which I am also intolerant but my reaction is not so quick. I am NOT a doctor just a sufferer btw. There is more to celiac disease than we are generally told and the state of your gut is often affected by it either directly or indirectly. I have just had my hair tested for minerals etc. Cost me about £250 as UK NHS wasn't helpful. Told me a lot about why I had so many intolerances and now I know what to do about it. My specialist also told me that my intolerance test only told me what I was intolerant of "at that time" as intolerances caused by leaky gut tend to be "dynamic" and change regularly. Final piece of advice, find yourself an experienced practitioner like mine - a doctor who has celiac disease and specialises in nutrition. Best of luck.
  8. Hi Bartfull. Same problem as you. Diagnosed 5 years ago but gluten-free diet did not do much except let the doctors tick a box every year as my blood tests came back fine. But actually a different story. Increasing intolerances. UK NHS will not test for intolerances. Had to go privately. Showed I was intolerant to all dairy, eggs and a lot of other foods. Doctors refused to accept results. Told by last doctor 6 weeks ago to "learn to live with it"!! Red rag to a bull. So I went private and started reading up on internet - this site as well. What I read here was confirmed by my specialist (a doctor who is also a Coeliac). celiac disease is only part of the story. Commercial gluten-free products are, on the whole, not good for you due to the processing - just look at the ingredients. Acute lack of energy, weight loss, mood swings etc have been caused by leaking gut (another problem UK NHS refuses to acknowledge). I have been put on a GAPS diet for the next year or so as hair and urine tests (which I also had to pay for) showed a general lack of minerals and some toxic elements in my body. GAPS is a newer version of SCD (Specific Carbohydrate Diet). Google it I know I am in for an uncomfortable 12 months but as it appears I have suffered from this most of my life (another research study I have read), at 64 it is about time I fixed it! Best of luck but please remember that only a small fraction of celiac disease sufferers have their gut completely healed by a gluten-free diet - some are made worse by it (although it IS essential, but keep off processed commercial gluten-free foods). gluten-free + GAPS diet I am not looking forward to!
  9. This thread is very interesting. Like so many coeliacs I thought my bad temper/anger was just part of my personality but realise that I have not always been like this at all and it is my celiac disease and other food intolerances that are playing a part. These intolerances make me very tired and very "down" and if anyone asks/tells me to do something I really can't be bothered doing then they get a mouthful. I also now realise that although my celiac disease antibody level is down to "normal", this is not the full story and there is more to celiac disease than is commonly realised. Since going on the gluten-free diet I have become intolerant to all dairy, oats, eggs, soya, grapes, pears, ginger....never ending. My body appears to be a mass of inflammation - costant SI pain, sore arms which leads to frequent headaches and migraines. But it is the depressive symptoms that I truly detest and the anger/short temper that comes with it. Now seeing a specialist who hopefully will guide me through a healing diet.
  10. Forgot to add - my wife reminded me - that the word "inflammation" is recurrent in both posts. I have an inflamed sacroileac and tennis elbow in both arms. All have occurred since going on this gluten-free diet and I have been taking diclofenac an anti-inflammatory drug which I detest! I am also seeing a chiropractor monthly. In addition I have intolerances to aromas which make me sneeze and run uncontrollably. Otherwise I have been 100% fit all my life!
  11. Thank you both for these posts. I have learned more from you than I have from any doctor I have met especially the consultant I saw recently who just said he couldn't help, had no answer and said I would have to "live with it". I am particularly interested in the egg cases that are mentioned. Can the meat from the chicken be contaminated as well if they are grain fed? I eat a lot of chicken.
  12. I have been questioning celiac disease treatment for some time as I was diagnosed with an antibody count of over 800. I think 10 is supposed to be high? Maybe someone can confirm that. Since going onto the prescribed treatment of 100% gluten-free I have encountered a multitude of food intolerences - oats, all dairy, eggs, soya, pears, grapes etc. I have to ask why? I do not believe in coincidences of this magnitude but I cannot find any evidence of any research into celiac disease "treatment" - only a plethora of celiac disease "Diagnosis" research projects. I am interested in hearing from any celiac disease sufferer if they have encoutered similar intolerences.
  13. I have spent several hours trawling through coeliac-related web sites looking for "treatment" and all I can find is that an immediate 100% gluten withdrawal in the recommended default. I was diagnosed 5 years ago and was put on the subscribed treatment. Since doing so I have grown a large list of intolerances: Oats, all Dairy, Eggs, Soya, Ginger (!!), Pears etc. Why? I can only hypothesise that having gone onto the 100% gluten free treatment my gut finds itself swamped by "new" nutrients it has never faced before and goes into hyperdrive! Result? It rejects accordingly leaving me with intolenances which all cause headaches and tiredness. But this is hypothesis and the health professionals don't listen - well they "listen" but don't hear. Has any research been done on this as my list is added to by the month.