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Buck22

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  1. I've been trying so hard to stay gluten (and corn) free and have been mostly successful over the past few weeks, but I'm still losing weight. I understand that it can take a while, but I'm eating as much as I can and still the scale goes backwards. I have a few of questions:

    1. How much of a setback does an accidental glutening cause? Do the villi go completely flat again immediately or does it take time and sustained glutening before you redamage them as severely as you did before you knew what was happening?

    2. Is there and drug or herb that will speed up the villi healing process?

    3. Is it easier for flattened villi to extract nutrients from liquids or solids, or does it not make a difference? Any specific foods whose nutrients are easier for sick villi to absorb?

    Thank you,

    Richard


  2. >>organic gluten-free yogurt

    Sounds good - what brand do you buy?

    Thanks,

    Richard

    Welcome! This is my first time posting as well! :rolleyes: I must say that I gained 10 pounds the first six weeks, but have plateaued. I'm almost at the six month mark and am becoming increasingly frustrated that I have not gained a few more pounds. I recorded my caloric intake the first six weeks, and ate around the clock. I think it's when we start to stress and have almost a fear of eating that it can also become difficult to have a healthy appetite. I have a family member who makes the best gluten-free cake. :P It's good for us to have a healthy fear of not wanting to be sick again. At the same time, when we feel extremely limited by our diets or stressed that we may not eat as much or a well-rounded diet. Now that the weather is warming up, I've enjoyed making shakes in the blender with fruit and organic gluten-free yogurt.

    My relative who was wasting away as a Celiac gained over 40 pounds in one year. Trust me, the weight was needed. So now, I need to break my 10-pound mark. I'll take ideas, too. :unsure:


  3. >>I agree with what others have posted.

    What? - that women suffer more disabling conditions because they do most of the housework, or that beer causes Parkinson's? :D Seriously though - although I'd like to believe I don't have Parkinson's and this has all been a big 15-year mistake are micrography, freezing, lack of dopamine also symptoms of Lyme?

    Regards,

    Richard

    I agree with what others have posted.

    After almost 3 years of being gluten free, I have found the following to be essential in recovery.

    Avoid MSG- I think this is possibly more harmful than gluten. If you're low in vitamins, like most gluten intolerant are, than the msg affects you even more.

    Avoid Aspartame- I used to drink a lot of diet coke. Has similar effects as msg, especially bad for your nervous system.

    Calcium/Magnesium Imbalance- I still struggle with being low in magnesium and high in calcium. I supplement with magnesium only, despite the 2:1 calcium/magnesium ratio that's recommended. Sometimes my left thumb twitches or my left eyelid feels heavy. Supposedly, the parathyroid gland regulates the balance of calcium/magnesium. I just read that flouride can damage the parathyriod.

    Avoid Flouride- Again, I think those who are malnourished are more affected by the flouride than a healthy person. I had nine fillings (white ones) put in throughout my twenties, having none before that. My teeth were decaying because of malnutrition. The dentist was giving me flouride treatments and telling me to use ACT flouride rinse after brushing. Obviously, my teeth were decaying from gluten intolerance, NOT lack of flouride. I believe I had some level of Flouride posioning that screwed up my parathroid. So now I only drink bottled water and use baking soda and salt for toothpaste.

    B Vitamins- I agree that this is a key deficiency. I can't digest any grains and I think it relates to the B Vitamin deficiency. I don't do well with most synthetic supplements, so I don't know how to correct this. Before I went gluten free I had tingling and numbness in my feet and legs. This went away with dietary changes. Soy lecithin has choline which is a B vitamin essential to the nervous system. I take the liquid form. Even though I can't eat soy, lecithin doesn't bother me. I add it to a fruit smoothie. If anyone knows more on how to correct B vitamin deficiency, let me know.

    Vitamin A &D- Supplementing with cod liver oil helped, especially in winter.

    Whole Foods Diet- Making all my own meals from scratch has helped me the most. Avoiding my intolerances grains, milk and soy. It's very difficult to avoid MSG, unless you make it yourself. Also, I buy my chicken and meat from whole foods. I'll buy a whole chicken to roast and have leftovers. Deli meat is full of preservatives and MSG. Processed foods, even gluten free, are mostly filler foods and delay the healing process.

    Liver/Gallbladder flushes-These really helped me. I had elevated liver enzymes and was very yellow looking. You can read about them on Curezone.com.

    I started getting sick when I was 25 or 26 and started the gluten free diet at 27. I'm thirty now and much better. I believe my recovery would have been much faster if I had known all of these things from the beginning and incorporated them into my life right way. Obviously, you have to do what's best for you, but in my case doctors were making my situation worse. Again, if I were to go back in time, I would find a good naturopath instead.


  4. The way they arrive at a Parkinson's diagnosis is to perform several different tests to rule out other possibilities - MRI to rule out brain tumour, eye test to rule out Huntingtons, blood tests to rule out other things (like Lyme?) , etc., etc. and after they've ruled out everything else, the conclusive confirming test is to gauge your response to Sinemet, which is the medication used to replace the missing chemical called dopamine that your brain is no longer producing enough of. If most or all of your symptoms improve or disappear with the introduction of Sinemet - in my case abnormal gait, freezing, small hand writing, slowness of movement, tremors ... then they know it's PD. All of my symptoms all but completely disappeared when I first started on the Sinemet almost 15 years ago. The honeymoon lasted about 6-7 years, but as the disease has progressed so have the symptoms. I know nothing about Lyme Disease, but will ask how that was ruled out at my next appointment.

    As far as the DBS (Deep Brain Stimulation) surgery goes... they only consider you for this if all other avenues of therapy have been exhausted. In the last few years I have progressed to the point where I (and they) had felt that this was my only hope of restoring a lot of my lost functionality ... until recently that is... I'm onto something with this Celiac thing, and I'm very excited. It's taken me 15 years to figure out, but it's been a revelation discovery for me so far (even though my doctors don't believe it) . I've got my fingers crossed.

    Regards,

    Richard

    I've been wondering if there's a connection ever since I read that Michael J. Fox (the most famous Parkinson's patient) spent years and years drinking massive amounts of beer. Hmmmm.... I bet you're on to something!

    I also agree that Lyme ought to be ruled out.

    Welcome to the board and please keep us posted!


  5. I was diagnosed with Parkinson's Disease almost 15 years ago at the ripe old age of 28. I'm beginning to think that the vast majority of my complications have been because of Celiac Disease rather than the progression of my PD. I'm even beginning to wonder if maybe that's what caused my Parkinson's disease in the first place! I'm only beginning to figure this gluten thing out, but the more I read about Celiac Disease and gluten intolerance the more pieces of the puzzle I am discovering.

    Re MSG - I'm exactly the same! It's absolute poison to me. Even the slightest trace amount sends me into a wild and uncontrollable shaking attack. I've been telling my neurologists about this for years, but they've never been able to explain the reason. Here's an excerpt from a recent letter I sent to my neurologist:

    "The link between what I eat and the severity of my Parkinson


  6. Thanks a lot Valda, et al...

    Thanks to this thread I think I've finally solved my 'butter' dilemma, that is finding a replacement without dairy, gluten or corn: Coconut Butter, made by Artisana! It's got the texture and consistency of butter and it tastes amazng! It's the best thing since sliced Food For Life Wheat and Gluten Free Rice Almond Bread! Ha! Best of all - no red spots on my legs either! I was afraid I might be allergic to coconuts as well because I develop DH when I use coconut cream from the can (must have been the "Potassium Meta Bisulfide E-224"), but not with this stuff (coconut butter). The coconut butter I bought is made by Artisana: "Raw Organic Coconut Butter", Contains absolutely No Peanuts, Glutens, or Dairy.

    My mission today is to find Pacific brand milk replacement and those Diestel frozen turkey sausages someone mentioned.

    This Forum has been a Godsend for me, not just for the tips, suggestions and recommendations, but especially for the understanding and compassion. Thank you so much everyone.

    Regards,

    Richard

    Diestel makes some frozen turkey sausage (no gluten, no corn) - breakfast sausage and Italian sausage. Actually, there's not a lot of difference between the two. After defrosting, make small patties and fry. It's nice to just do up the whole roll and then freeze for another day so you don't have to cook every morning.

    I mix the Italian variety with hamburger to make meatballs or put in spaghetti sauce.

    Almond meal with salt and pepper and some butter makes a good topping for baked fish.

    There are many varieties and blends of rice. When I have rice, I vary the blend so that gives me more variety with the rice.

    Have you tried almond milk? It makes a great shake - put in blender with frozen strawberries and some sugar or stevia.

    You might find it helpful to go to the library and check out some cookbooks to find some recipes to give more interest to your meals. If you are near a store that has Kosher foods, you can find some things there - those that are for Passover would not have corn - those that are Pareve would not have any dairy. Mother's margarine has no dairy and no corn (that's the one I use).

    Dehydrated fruits are good snacks - like pineapple, papaya, mango.

    The only cereal I've found that has no gluten and no corn is Erewhon Gluten-free Crispy Brown Rice. I add chopped dates, pecans and bananas, and some sugar to sweeten it up, with almond milk. I eat this either for breakfast or when I just want something good.

    If you can have yeast, there are some good cashew based "cheese" . Do a search on this forum for "cashew" and you should find the cheese recipes. They are really good on a number of things, such as melted on a hamburger patty, as a sauce for vegetables and caseroles, on pizza.


  7. Coconut oil - you mean for cooking instead of olive oil, or as a dressing? Where do you buy it? I'm also looking for a good butter replacement for toast, but it can't contain any dairy, lactose or corn. Is there a coconut version?

    Regards,

    Richard

    I recommend coconut oil for those trying to gain weight while their intestines heal. It is absorbed differently and more easily than most fats. An internet search will explain more about it and where to buy it. (I gained 10 pounds in 2-3 months eating this, although to be honest, I didn't want to--I was only trying to get more energy! Still, this may help the truly underweight.) Best wishes!

  8. Coconut flour, never thought of that. Thanks Nancy.

    Regars,

    Richard

    I just made a custard from coconut milk (or cream) and eggs with some sweetener. It was very good! I also make a lemon curd (like a custard) with lemons, eggs, sweetener. With raspberries on top it is sinful.

    Sometimes for breakfast I eat olives and nuts. Other I make a coffee cake out of coconut flour and rice bran (and other delicious things) and have that for breakfast. Sometimes I just have soup.

    I love Thai food so I'm always making curries with meat, peppers, curry paste, coconut milk, veggies. I eat lots of chicken and pork, beef only rarely.

    You might try salmon and tuna and see how it goes.

    I find it helps to forget thinking of breakfast as having to be something like cereal and widen your horizons a bit. In some countries they have rice and fish for breakfast. :D


  9. Thanks a bunch RiceGuy! I'll give some of those a try.

    Regards,

    Richard

    A nice breakfast cereal is Rice & Shine brown rice cereal from Arrowhead Mills. Kasha (roasted buckwheat) is really tasty too IMHO. Muffins with good texture are relatively easy to make. Have you tried making French toast with the bread you eat? That can be done with egg replacer too. Pancakes with fruit can be great for breakfast. In place of potatoes, try taro. It can be boiled, mashed, fried, etc just like potato. Just make sure to get the dry land taro, which is white inside, and DO wear rubber gloves when handling it raw (oxalates).

    As was said already, nuts and legumes are a great thing if you can have them. Tofu can be used in a zillion places too.


  10. Thank you for all of your feedback. Not sure if you're in the States, Judy, but here in Canada the ingredient list on the side of the package reads a little differently:

    Vanilla Almond Breeze

    PURIFIED WATER, EVAPORATED CANE JUICE, ALMONDS, TRICALCIUM PHOSPHATE, NATURAL VANILLA FLAVOR WITH OTHER NATURAL FLAVORS, SEA SALT, POTASSIUM CITRATE, CARRAGEENAN AND SOY LECITHIN

    I suspect it might be the carrageenan as Mango has suggested. Whenever I've had a problem with dairy: cream and cheeze specifically, that ingredient always seems to be there. Maybe this is why I'm ok with eggs. Maybe it's not a dairy thing, but a carageenan thing.

    Thanks,

    Richard

    HI

    Patti thanks for alerting me to this thread.

    I can usually tolerate the soy lecithin but maybe not in this

    will sure try to find yours.....pacific brand

    good luck everyone.

    I did like the taste.

    judy

    ******************************

    Blue Diamond Vanilla Almond Breeze - 32 oz - 12 Pack AS-SP064] $37.19

    Gluten Free

    Ingredients: Water, evaporated cane juice, almonds, tricalcium phosphate, vanilla extract, sea salt, potassium citrate, soy lecithin, carrageenan, vitamin E acetate, vitamin A palmitate and vitamin D3.


  11. Hi All,

    I react the same to corn products as I do to glutens thus corn starch, corn oil, corn syrup are out. Tomatoes are sometimes a problem so I'm also avoiding nightshades at least until the damage done to my villi/digestion, etc has had a chance to repair itself. I also have a problem with cream and cheeses. I'm not sure if it's the lactose or something else like carageean (sp?), but I think I should stay away from dairy, again at least until things heal. I seem to be ok with eggs, but I'm afraid to worsen the damage. Shrimp makes my dermititis herpetiform flare up. Should I rule out salmon and tuna as well?

    The problem is that with all of these restrictions I don't know what to eat any more. I desperately want to put some weight back on, but you can only have rice, chicken and vegetables so many times a day and so far it's not helping me gain weight. For breakfast I have gluten free almond bread with honey and gluten free almond bread with honey, and sometimes gluten..... you get the idea. This morning my wife made me rice with coconut mike and yam which was yummy and felt like it had a lot of substance to it. Hopefully I react well to it - I could see it becoming a staple.

    Any meal ideas for me? ... specifically breakfast, or any suggestions to help me put weight back on with consideration of all the restrictions above?

    Thanks,

    Richard

    Markham, Ontario, Canada


  12. Yes, fine. All except corn oil that is.

    Regards,

    Richard

    I react to nearly all milk substitutes as well! So you're not alone. Unfortunately though, I can't be of much help to you. I haven't exactly figured it out either. I HAVE figured out though that I react to anything and everything with oil and/or fatty acids in it...so that would be the oil in rice milk and the almonds in almond milk. Are you okay with oils and fats?

  13. Hi All,

    This is my first post - been lurking for a while.

    I've been searching for a while to find a milk substitute since I have trouble with real milk (lactose?). I can't drink anything except water and home made strawberry juice without reacting. I finally thought I found the answer when I found "Almond Breeze" made by Blue Diamond (Growers). It says gluten free on the label, it doesn't have lactose, and it has no corn starch/syrup, but I still have a very bad and immediate gluten reaction to it (gas, stomach gurgling, diarrhea, dermatitis herpetiformis , etc.) Althought it says gluten free it does have a couple of suspect ingredients, namely "natural vanilla flavor with other natural flavors". I haven't called them yet since I just confirmed my suspicion this morning (Sunday), but I was wondering if anyone else has had a bad experience or reaction to this problem.

    Regards,

    Richard

    Markham, Ontario, Canada