I think that perhaps we need to listen carefully and find the points that are of interest to us, as a member mentioned on this thread earlier. One point I'd like to make is that medical researchers within the European Union are extremely strictly regulated and cannot make quack type claims. These are the guys that I am listening to particularly as I know their research has solid roots. Please don't forget that people, when in interview, will find it difficult to quote exactly from their research. It is good also to listen to people who have experience of being Celiac or Gluten Sensitive, but that does not necessarily make them professionally expert, unless they of course have a solid medical background in this field. We are very lucky to have free access to this summit and it would be nice that we could be at least a little positive about the 'good bits' these speakers are bringing to us. I for one will be contacting Mario and Mr Fasano for further information on research they may be doing as here in the UK the NHS is cutting back radically on GP testing and will not look at anything outside of IgE or IgA with regard to gluten sensitivity. I have really serious ataxia when glutened accidentally and am so grateful to have the chance to reference listening to these seminars as a key in to getting an audience with Mario in particular.
Please do go online now and have a listen. This guy has brought together so many seminars from the world's big brains on Celiac and the related conditions. Free and lectures only available for 24 hours from the initial broadcast of the lecture... so get online now! http://theglutensummit.com/day-1/
Thanks all so much for the suggestions and support. I can say that things are starting to calm down now. I think the dairy free probiotics really helped a lot. I never take a lot of anything as I find this is what can sometimes tip me over the edge. One probiotic a day together with Aloe Vera and usual supplements has made all the difference. So good to know that this is lesson to us all!
Hi Caroline, thanks for taking the time to try and help me! I am a lady (or at least a female hehe), so I suppose hormones could be playing a role. I am not sure if I've ever experienced "pooling" specifically, but I defintely, absolutely, experience the good ol' stomach bloat. My stomach is pretty much permanently bloated all the time right now with all this stuff going on and gets worse when I get glutened. If only I could wear sweat pants to work on those days . My digestion seems great otherwise, I can tolerate dairy like a champ (i took a long break from it while healing but am back because i couldn't help myself), and I can tolerate fruits / veggies I couldn't tolerate when first going gluten free. I do seem to void my bowels most days which I attribute to my green smoothie intake, otherwise I think I would have to deal with constipation pretty regularly (did you like my wording there? is that a pun!?). I try to drink plenty of water being in Colorado so I'm usually pretty good about that, but by no means perfect.
What herbs are you taking and which brands? and speaking of, Steph can I pick your brain one more time and ask if there are any brands of supplements you have found to be safe? I hate to not be taking any but I'm just too terrified right now and have gotten horribly ill off several brands that say "gluten free" right on the label. I really seem to be highly sensitive right now. Does that ever wear off for some people?
I still seem to be having some hot episodes here and there (i'm only 29 so no menopause yet!) but they have come down drastically with the absence of those corn chips. Sigh... I miss them. Now I'm wondering if its CC or a corn intolerance and hoping nothing else pops up to bother me, I am so ready to feel "normal". Or at least my version of it.
Hey Rana It's great that we can all compare notes on our symptoms and hopefully find solutions. I'm on a proper herbal prescription made for me, so not necessarily the right herbs for you. Amongst them are: Schizandra Chinesis, Rosemary, Dong Quai, Borage, Burdock, Siberian Ginseng, Oregon Grape Root. To tell you the truth I feel better than I have done in ages digestion wise but some of the symptoms i've been having since i was a teen have cropped up (unrelated to gluten)... left arm pain, left lung congestion (sounds like angina but it isn't) - might be from all the cheese I've decided I'm going to eat :-). I'm hoping that they will start to go eventually too. Overall the effects have been amazing... more energy, clearer head, sleeping like a log (and i mean like a peice of wood, out for the count!!!), regular voiding of bowels (I did love your pun btw!). I had heat issues since my twenties and am only 40 now but found after children it was much worse... boy you are making me feel OLD! The other great thing is that I'm hardly reacting to things anymore. I thought i was reacting to the food I ate... but no, it was basically that when I ate my liver was filled with congested blood (TCM term i.e. full of backed up hormones, compounds it was trying to excrete, cholesterol etc) and when i ate my liver just got overwhelmed and started dumping bilirubin in to my blood stream (hence the itching). This is what i had when I was pregnant (cholestasis). With the bitters in this mix my bile flow is much better. Cholesterol and hormones levels in my system are normalising. If you have a registered herbalist near you try going to see them but as Yolo on here says be very careful that they are using NON GRAIN alcohol - it would need to be something like beet (sugar beet here in the UK)... large companies like Vogel use this method.
I made a health breakthrough when I dropped all vitamins and supplements. Counter intuitive, isn't it?
I MENTION THIS REACTION AS A SUPER SENSITIVE CELIAC. SORRY TO BE IN THE REGULAR SECTION, BUT I WAS SPECIFICALLY ASKED A QUESTION. PLEASE DISREGARD IF YOU AREN'T A SUPER SENSITIVE CELIAC.
I try hard to eat a balanced diet and get everything I need through food.
I did add back an iodine supplement, Thyadine,and Life Extension Vitamin D3, 2,000 IU, in the winter. I diluted it since I didn't want to take that much. I only need a drop a day of each. That cuts down the effect of possible cc.
It is so interesting that you should say this. Though I'm on a herbal prescription i completely dropped my usual vits/minerals and the wierd thing is that I really don't feel that i need them at all now. I don't get the muscle aches, itching, D and other things that used to bother me so I suppose am very lucky! Like you the vits seemed to be making things worse not better!
We just did the gastrointestinal tract at Uni. When damage occurs it becomes difficult for the gut lining to keep things out of the blood that shouldn't be there. It might be you are reacting to the absorption of larger soy molecules than normal. It's also possible that you are reacting to the oestrogenic effects soy has. Have you had any problems with oestrogen recently? If your docs can balance your hormones you may get some relief and find that you can eat things you have been sensitive to (not gluten!). I am taking a herbal remedy that I can say is really helping me. I am behaving better this end of cycle than I have done in years - and I'm not wanting to hate/slander my estranged husband so something must be working! The heat/sweats I was feeling have disappeared and I am now able to eat cheese! Only been on it eight days (the remedy that is, not the cheese!)
Caroline, I have been dealing with sciatic nerve issues for awhile I havae had it make my feet fall asleep but this is the first with the type of pain I am having in the left foot. While, at first I thought it was relate, I am not so sure anymore. The sciatic, for me, does no even appear to me as anything until it hits me at the back of the knee. Then it either wraps or radites around the knee area making my knee achy and feels like my circulation is cut off. Then I will have waves of pain down the back of claf and cool feelings on the left side of calf.
Since I can actually sit without feeling the nerve now but foot is no better I have a feeling something else is giing my foot issues. It actually feels like the toes are coming coming apart from the ball of the foot. It feesl like there is swelling on the bottom of my foot at the point where the foot hinges to the toes but there is not. It's almost like there is too much weight on the foot, yet I am not an ove weight person. Resting it makes no difference, heat is the only thing that seems to improve the situation.
Hi AVR1962, my goodness you could be describing the pain I had almost to the letter. I was struggling to remember the exact path of it but the knee wrapping and the feeling like your toes were going to fall off (I was skiing with the worst of it and honestly I thought I have severe frost bite!), the ball of the foot felt like it was protruding out in to the bottom of my boot. There are a number of exercises I was given to stretch the nerve out. The most useful of which was to put a phone directory (here they used to be thick!) on the floor and put your toes (in shoes) on the side of the directory and then relax your heels back to the ground. That should help stretch out the bottom half of your leg.
Then the other one, for the ankle, toe bit I can't describe really without actually doing it! It involved sitting with your bad leg up on a sofa stretched out, other leg on the floor. point your toes as far as you can on stretched out leg and then inwards (pigeon toed we call it), lean forward until you are as far forward as possible without causing pain and then bring your head to your chest. if you are doing it properly you should feel your whole sciatic nerve from your back to your ankle/toes. If it hurts too much then sit up a bit straighter and try nodding again! Do this very slowly! It took a while for this to work for me, a few months but eventually the pain went away when doing things like running. However as I haven't been skiing I can't tell if it has been a complete success.
Follow up- bought some cod liver oil tabs which contain 1250 IU vit A each (25% of daily allowance) and 130 IU vit D. I am taking 3 tabs a day like the bottle suggests and I am noticing a big difference already. My body was in need of vit A!!
It's really wierd isn't it?! I go through phases of vision issues. I remember when i was younger I was always squinting, to protect my eyes from the light. Right now I get a lot of images staying as shadows in my eyes for minutes after stopping looking at said thing... say a TV or a light. Since I've been on a liver detox and also sorting out the adrenal fatigue things seem to have gotten better. I went out today in the sunshine without my sunglasses... so must be slightly better.
You poor things both of you. You needing to know that your aren't going to be glutened and him probably dealing with queries, stress and pre-wedding nerves! I'm sure that he will settle down. In the meantime I agree with the other poster that you should make sure you have a very very good meal before the wedding, take snacks along in your bag and definitely have some wine if that's what you like! You never know, you might be surprised and the girl who obviously had a whinge at him may have seen the error of her ways and get the kitchen to produce something safe and delicious for you. Crossed finger!
Hi there, I totally feel for you. Like you, when I went gluten free some of the symptoms subsided, such as migraine and upper bowel swelling, but then a whole other raft of issues started appearing. I felt like I was reacting to everything I ate...chicken, all grains, nightshade plants, starches. It was getting ridiculous, and a lot of my symptoms were still there... D being the most obvious. Then I started to suspect that, with some tiny red egg like things in my stool, there were some unwelcome visitors in my GI tract. So I started on a protocol for parasite and bad bacteria reduction. I think we are all meant to have a few of these, but with Celiac and other GI issues often the visitors multiply to a point were they start to do damage. Start off slowly and increase, otherwise you will feel very poorly. Here is a list of what I take at the moment.
L-glutamine - 6 grams spread throughout the day - this controls reactions to food getting in to the blood stream.
V2000 vitamins by solgar 1 twice daily
Solgar magnesium citrate 1 three times daily
Solgar Calcium Citrate with D3 1 three times daily
Eridicidin by Biocare 1 three times daily
Nutrigen digestive enzymes 1 three times daily
Lifeplan digestive enzymes 2 three times daily
Bromelain by Viridian 2 three times daily
Mebendazole (Ovex over the counter) 100mg or 1x 5ml teaspoon twice daily.
Paracleanse by Inna Health (not sure of quality) 2caps three times daily.
Probiotic - bio-kult 1 at night before bed.
The ones that are twice daily I make sure I take 12 hours apart when waking and before dinner. Take the Anthelmintics (wormers) on an empty stomach, though it can aid absorption through the gut if you take mebendazole with something fatty. One thing I find that really boosts these is taking raw crushed garlic on every meal you eat. Takes a bit of getting used to but they HATE it! The digestive enzymes are also very important as they will digest everything in your gut... even worms! Perhaps start with the raw garlic then add things in. I don't know if you are from the states but perhaps look at Humaworm. They say to be on these courses only a few weeks or so but frankly I think if you have a really bad case of dysbiosis you need to stay on a course for 2-3 months. Don't stop when you feel better, keep going for at least a month afterwards. L-Glutamine for me has been a lifesaver - it has stoppped me reacting to foods - which was my main reason for not wanting to eat too! Also food wise, stay away from dairy, grains and starches. Some alkaline fruits like pineapple, raisins, figs, dates, lemons are really good as they create an undesirable environment for visitors. You will need to eat proteins to help, so well prepared beans with only oil/cider vinegar/salt pepper, meat (stick to lamb, duck and free range corn fed chicken) stay away from sugars too. It took me a while to get in to this diet but I am SOOOO glad that I did. I feel better than I have done in years! You may find you get bunged up a bit on these, but take a desert spoon of aloe vera juice in the day time if this happens - adjust to requirement. You do not want to get bunged up as the toxins from the critters will end up in your bloodstream - making you itch!
Hope that all this helps. If you can't find particular supplements let me know and I'll let you know quantities in each so you can find substitutes.