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#465153 - 03/19/12 02:15 AM
Re: NSD - doctor not on board with it at all
[Re: marta]
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New_Member
Registered: 03/10/12
Posts: 18
Loc: Hawaii
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Sue. I'd be happy to share the recipe. Look for it on the recipe forum. It works for pancakes or waffles. They turned out just fine and if I poured a larger spoonful in the skillet I think they'd make an accceptable crepe sub. However I want to experiment with the ingredients just a tad to see if I can get the texture just a bit smoother and more crepe-like. I'll post another recipe if I can perfect it. I work 6 days a week, so Sundays are my only day for experimentation. Watch for a new and improved version sometime next week -- I hope!!
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Marta
Diagnosed 2002 PsA Enthesitis Episcleritis Methotrexate-Mobic-Folic Acid
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#465156 - 03/19/12 02:31 AM
Re: NSD - doctor not on board with it at all
[Re: marta]
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Very_Addicted_to_AS_Kickin
Registered: 01/13/08
Posts: 19181
Loc: Upstate NY
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thanks 
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   sue USpA Humira (no more methylpred or Aleve?) LDN/zanaflex/flector vits C, D. probiotics. fish oil. CoQ, Mg, Ca chiro walk, bike no dairy (casein sensitivity), limited eggs
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#465160 - 03/19/12 06:38 AM
Re: NSD - doctor not on board with it at all
[Re: marta]
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Third_Degree_AS_Kicker
Registered: 03/30/11
Posts: 271
Loc: Blenheim ON CANADA
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I guess you could say I've done a 360 degree turn on my meds 'plan'. After reading a lot of sound advice here, I am just going to stay with this no starch diet and not mess around with my meds at this time.  Thats great to hear, its always nice to see advise from KickAs put to use, and helps us all see that our time is not wasted helping one another :-) Would I be considered to be on a LOW starch diet, since I have not excluded simple sugars from my diet? Sugars are starches, right? I also eat Carol Sinclair's lightly cooked fresh tomato sauce served over fresh zucchini squash that has been run through a machine that turns it into "spaghetti" strands. I believe the lightly cooked tomato counts as a starch too? ..... For the first time ever, I discovered the joy of Almond Flour Pancakes with real maple syrup and they were unbelievably good!!!! My husband loves crepes, and since these turn out thin and crepe-like, he was happy too. With crisp bacon on the side, it was quite a feast this morning. This really satisfied my craving for something bread-like.
there are two ways to look at it. 1) buy some iodine, and put a drop on some of the food you are curious about (on a seperate white plate or bowl) and if starch it will turn BLACK. 2) read Breaking the viscious cycle, where she explains the chemistry behind the NSD and how you can choose to view it. In following her restrictions all but SIMPLE Carbs are out, inclduing Maple syrup the real stuff. I went on that for a few months and it helped and then moved to a more LSD which also has benefits. Occasionally i have TESTED to see which starches i absolutely MUST stay away from, and which night shades i must too. (Potatoes and Green peppers are HUGE No NO for me, flare up next day or two for sure!) if you look over in Diet related post section you will see many other advices for NSD, but i think what ever direction you take you will find success, as you seem to be one to take action and listen to your body. I lost 20 lbs within 1 year, after having gained it over the last 3 because of chronic diahrea , which apprently was because of all the starch. Also Check out Coconut flour! http://www.tiana-coconut.com/coconut_flour_recipes.htmThese recipes are awsome and do definately help with bread cravings! Also look up these links too. http://thisprimallife.com/2010/08/a-primal-sandwich-solution/http://www.cheeseslave.com/low-carb-bacon-egg-cheese-muffins/i use silicone cupcake "papers" to make these, so they pop out of tins easier and are way easier to clean up.
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Diagnosed Fibromyalgia 2004 Diagnosed Ankylosing Spodylitis Sept 2011. Vertigo Since October 21 2012 Humira June 2012 Spending Each day using it to the full to help people in my community have hope, the only hope that keeps me going despite pain and fatigue every day most of the day.
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#465186 - 03/19/12 02:14 PM
Re: NSD - doctor not on board with it at all
[Re: marta]
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New_Member
Registered: 03/10/12
Posts: 18
Loc: Hawaii
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Wow - 20 lbs - that's great! Thanks for the recipe ideas and baking tips. I'll check them out and start experimenting. I read that recipes made with coconut flour do not taste like coconut, which is great.
I also can't get iodine locally, so I'll have to buy it from iherb.com - but they have so many types and brands I have no idea what to buy. I'm calling their phone support today to see if anybody knows what I should buy.
I can't find coconut flour on island, but I can order it online from a iherb.com. They sell vitamins, health foods and all of the Bob's Red Mill products. The best part is that the shipping is only $10 no matter how large your order is. So, we are ordering flour and other heavy baking items along with our vitamin order to take advantage of the shipping rate. That also works well when you combine orders with friends, as we do.
At iherb.com, Bob's Red Mill brand almond flour is $9.29/lb as opposed to $13.99 at our local health food grocery store. Coconut flour is $5.81/lb. I have no idea what mainland grocery store prices are like, but for me, iherb's prices represent a huge savings for me. Plus, they have every conceivable product available.
Have a great day!
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Marta
Diagnosed 2002 PsA Enthesitis Episcleritis Methotrexate-Mobic-Folic Acid
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#465202 - 03/19/12 06:28 PM
Re: NSD - doctor not on board with it at all
[Re: marta]
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Registered: 07/26/04
Posts: 1926
Loc: Auckland, New Zealand
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Would I be considered to be on a LOW starch diet, since I have not excluded simple sugars from my diet? Sugars are starches, right? I also eat Carol Sinclair's lightly cooked fresh tomato sauce served over fresh zucchini squash that has been run through a machine that turns it into "spaghetti" strands. I believe the lightly cooked tomato counts as a starch too? No, simple sugars are not starches. Starches are complex carbs - polysaccharides (long chain sugars). Simple sugars (monosaccharides made up of one sugar only) are fine eg glucose, fructose (as found in ripe fruit). Disaccharides (sugars made up of 2 components) can be slightly harder for some people to digest. These include refined white sugar and lactose in milk. But most people do not need to cut these out. So I would start with only cutting out starch for now - this is the no starch diet after all not the no anything diet. If after several months you don't see any progress at all then consider cutting out dairy products and some people eventually also cut out all sugar in general including fruit. I must stress though that this is not the norm and not neccessary when first starting out. You only need to cut out dairy and possibly sugar if you don't see a response after cutting out starch for at least 3 months. Cutting them out isn't going to get you there any faster unless you actually have a problem with them which most people dont. So if you start to feel better with simply strict no starch then just stick with that. I hope that makes sense. Cooked tomatoes always test positive for starch for me. For the first time ever, I discovered the joy of Almond Flour Pancakes with real maple syrup and they were unbelievably good!!!! Just be aware some people do react to too much almond flour or almonds in general. So don't go overboard on it. This is the case for my hubby. He has more success with coconut flour. As for iodine, you are looking for a simple Iodine Tincture - a weak iodine solution. Most pharmacies sell it. Do not get the colour free stuff as it doesn't change colour on contact with starch. All the best
Edited by Kiwi (03/19/12 06:31 PM)
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Chelsea 
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#465215 - 03/19/12 08:29 PM
Re: NSD - doctor not on board with it at all
[Re: marta]
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New_Member
Registered: 03/10/12
Posts: 18
Loc: Hawaii
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Hi Kiwi - thanks for the info. I'm glad you warned me about too much almond flour. On another post I read that almonds are loaded with arginine - not good for me since I tend to get mouth sores from the methotrexate (and probably hereditary to some degree). I'm looking at recipes using coconut flour.
I found something on the iherb website called World Organic Liquid Potassium Iodine - is this what I need? I don't know if it's colored or clear. I guess I'll have to call them again. The person I spoke with this morning didn't seem to know much about iodine. None of our local stores carry any type of colored iodine - all I could find was a clear antiseptic containing 10% iodine.
Right now my diet consists of fresh meats, stir-fried or steamed low starch vegetables, mixed-greens salads with fresh tomato and cucumber, some natural cheeses, fresh and dried fruit, fresh papaya, pineapple & coconut from our yard (ripened on the plant). I make my own coconut cream. I make sauces and 'gravies' using pan drippings, wine and fresh dairy cream and/or butter. I don't know if dried fruit is allowed, but that's what I snack on. I eat a few walnuts on occasion, but try to stay away from whole nuts because I just got over a very painful episode of Diverticulitis.
Once I get the iodine, life will be simpler. For now I'm just cutting out the obvious starches and reading labels when I shop.
I really like this diet. It is similar to the way I used to cook when I first got married - I made everything from scratch, didn't eat much bread and ate a lot of fruits and salads. So, I guess you could say I'm going back to my roots - cooking-wise.
Thanks again for the information.
_________________________
Marta
Diagnosed 2002 PsA Enthesitis Episcleritis Methotrexate-Mobic-Folic Acid
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#465329 - 03/21/12 02:14 AM
Re: NSD - doctor not on board with it at all
[Re: marta]
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Registered: 07/26/04
Posts: 1926
Loc: Auckland, New Zealand
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I found something on the iherb website called World Organic Liquid Potassium Iodine - is this what I need? I have two types of iodine mixtures. On is called Iodine Tincture and contains Iodine 25g/L, Potassium Iodide 25g/L, ethanol and water. The other is called Aqueous Iodine Solution (also known as Lugols Solution) and this contains 5% Iodine and 10% Potassium Iodide. Both are amber in colour. What you are eating now sounds very good. You're on the right track!
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Chelsea 
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#465384 - 03/21/12 11:04 PM
Re: NSD - doctor not on board with it at all
[Re: marta]
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New_Member
Registered: 03/10/12
Posts: 18
Loc: Hawaii
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Thanks so much! They list all the ingredients on their website, so I'll look for something that matches what you use.
Edited by marta (03/21/12 11:04 PM)
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Marta
Diagnosed 2002 PsA Enthesitis Episcleritis Methotrexate-Mobic-Folic Acid
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#466076 - 03/30/12 04:14 PM
Re: NSD - doctor not on board with it at all
[Re: Jaybird]
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Journeyman_AS_Kicker
Registered: 03/18/12
Posts: 101
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While some doctors may be unethical, most I think are lost because AS is so difficult to diagnose and treat, and there is so little "hard evidence" of alternate treatment. In the United Kingdom, most doctors work for the government,so don't have huge benefits from the insurance/ pharamceutical industry. I think many of us are "angry" with the medical world for not having good treatment, and perhaps sometimes unfairly, take it out on our doctors.
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Most likely psoriatic spondylitis. HLA - .
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#466077 - 03/30/12 04:16 PM
Re: NSD - doctor not on board with it at all
[Re: Jaybird]
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Journeyman_AS_Kicker
Registered: 03/18/12
Posts: 101
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If medical doctors are beholden to entities like drug makers and insurance companies, they cannot...I repeat cannot...work in your best interest.
While medical doctors are fine for diagnosis and possibly routine evaluation, you need not take whatever drugs they are handing out. Perhaps you tell your current doctor that you are reducing or stopping your current medication. If he/she is not supportive, find one that will help.
Medical doctors are paid consultants. They are there to recommend, not instruct or dictate. A lot of it is about control. When I was not willing to give up this control, you would be surprised how many medical doctors got flustered or just "shut down". While some doctors may be unethical, most I think are lost because AS is so difficult to diagnose and treat, and there is so little "hard evidence" of alternate treatment. In the United Kingdom, most doctors work for the government,so don't have huge benefits from the insurance/ pharamceutical industry. I think many of us are "angry" with the medical world for not having good treatment, and perhaps sometimes unfairly, take it out on our doctors.
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Most likely psoriatic spondylitis. HLA - .
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