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Anyone for dietary changes?
- poseymint
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I'm off sugar which is a minor miracle for me. I feel better and have lost 20 lbs, but its not so much about the perfect weight now, i care more about being healthy. My blood glucose is good. But am back on the prednisone so that makes me want to eat everything is sight! Hoping to be off the pred soon, but for now its helping me with itching/swelling along with platelets.
I am looking at eliminating histamine causing foods to hopefully reduce inflammation and allergic reactions. So I'm off seafood, and most meats- don't love beef anyway. Also fermented foods, aged cheeses, processed foods. Tree nuts and avocados cause me to having an itchy mouth- I eat them anyway- hah (you can see what I'm like with diets). So I am doing my best to not eat those things. Will be increasing my veggies and fruits. I've been loving my carrot soup- just a bunch of carrots onions potatoes veggies- whatever you have, cook and puree.
Anyone else out there making changes? Or like me, wanting to but need motivation? thanks
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The orange cheeses are the ones that aren't too good for you.
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- meredithjane
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My husband has allergic skin swellings - large, raised, red & itchy patches. Specialist seems to think it is 'angio-oedema' - an autoimmune condition. We don't know what causes it, & you can imagine the speculation!! (from hot chips to celery) Takes non drowsy antihistamines when he feels a suspicious patch coming on. I suspect 'stress' is involved but is emphatically denied. . .
Enjoy your winter soup. Yum
mj
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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The problem is that nothing is ever really healthy. Maybe organic, if it truly is organic. Most foods are tainted in some way and the sad thing is that nothing is really good for us. We live in a toxic world.
I need inspiration to start again. I saw that Fat Sick and Nearly Dead 2 is on NetFlix (saw the first one). I really need to watch that. I cannot break the sugar habit. I don't eat a lot of junk food but I do drink a lot of iced coffee.
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- poseymint
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Glad you mentioned Paleo, Sandi. I have heard good things about it too. I have a book and should read it again. Have you heard of people having good success with autoimmune issues by changing to Paleo? I guess you did say your daughter. Someone recently told me a story of a young guy in their office who has had autoimmune issues(not sure what) since he was a child. And he has had good results from going Paleo. Threes months is a good amount of time to find out if something works I think. My diet has always been heavy on the bread, tortillas and wheat- I can see where less of that could be healthier.
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Bread and wheat are the worst foods. It's hard to avoid them though.
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- Aoi
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I tried a paleo approach but I seem to not handle that much protein/meat particularly well. There are a variety of conditions for which the paleo diet in any form would be strongly contraindicated (e.g.: UCDs, porphyrias), and others for which the outcome seems to be variable. Unfortunately books by the likes of Loren Cordain and Rob Wolf are a bit too enthusiastic about the benefits. All that said, I do know people reporting success with it.
Another issue to consider: the gut microflora. I've been reading a lot about this in the past few months, including one report of a person with ITP having a remission after a fecal transplant. I hesitate to make any suggestions because the research is still early days.
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Getting a balance on Paleo is possible. It's just hard to stick to such a strict menu. Eliminating sugar and gluten is probably the top priority.
So I went out today and bought some food. I got: Wild orange roughy, wild Sword fish, fresh pineapple, organic lettuce, spinach, kale, cucumber, fresh beans.....now I have to figure out what to do with it. :S
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- Aoi
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I never quite managed that, but my digestion is very irregular, unstable, and unreliable. I have an underlying connective tissue disorder, so that's probably why. Gluten was simple since I don't particularly like it. I still eat sweets from time to time, so sugar is still part of my diet.
Your dinner possibilities are vast with those ingredients. I'll be having salmon with broccoli, peppers, and sweet potatoes. Maybe some pumpkin seeds in there too. And my usual supply of vitamins and minerals in pill form.
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Aoi wrote: I never quite managed that, but my digestion is very irregular, unstable, and unreliable. I have an underlying connective tissue disorder, so that's probably why.
Me too. Supposedly sugar is the worst as far as autoimmune disorders and the gut go. Sugar increases yeast and inflammation.
I figured out the food. Last night I had a blackened swordfish steak. Right now I am having a great salad with all of my weeds. I used to be strictly an icerberg lettuce person, but I do like the spinach, kale and iceberg mixed. Also added eggs, onion, tumeric and a bit of shredded cheddar. Tastes great!
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- Aoi
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My current approach to sugar is to only have it in easily recognized desserts. No added sugars in anything else I eat or drink (for instance, the naturally occurring sugars in fruit are fine). At least this way I'm not being fooled or misled about what I'm consuming.
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- Sandi
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- Aoi
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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My problem is that I have so many issues that doing one thing contradicts others. I'm so confused. I really should see a nutritionist. I think I'm okay eating what I bought for this week, but that will eventually get old.
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- Aoi
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- Sandi
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- JMB
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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But - getting tested can give you a starting point!
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- mrsb04
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- ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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- Sandi
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- Aoi
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- Sandi
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- mrsb04
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- ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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- poseymint
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I couldn't lose weight while on prednisone but the dietary changes have helped me not gain weight. I've been on it this time for 9mos and have tapered down to 1mg. yay! The weight is starting to come off. I didn't tolerate it well this time, even lower doses of 10mg was driving me up the walls. So stressed out, couldn't sleep well, impatient, intolerant, and in a hurry. I have taken too much of the stuff. omg- its so nice to be able to sleep again!
I think the dietary changes have helped me with the pred withdrawl symptoms. Two years ago when I tapered off of prednisone I was suffering terribly with joint pain. Walking was a challenge. I remember having a hard time keeping up with a 92 yr old woman and had to get an 88 yr old to open a jar because my hands hurt so. I was expecting the same but haven't had much pain at all. I joined a gym and have been doing very gentle "work-outs" on the machines. (I do notice I get tired easily, my legs get weak and have trouble recovering my energy level- thats pred withdrawl). Also I know that the flu vaccine brought on an attack of joint inflammation 2 years ago- my immune system reacts badly to that vaccine. This past year I didn't get the vaccine so perhaps that has also helped my joints.
Lately I've had high blood pressure which I blamed on prednisone. But its remaining high even with the taper, so don't know whats going on there. I've lost 27 lbs in 2 years so shouldn't my blood pressure be lower? not fair, but I'm still over weight so always something to work on.
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- Aoi
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When you say 50%, I assume you mean by volume and not calories. Or are you counting nuts, seeds, starchy vegetables like yams, and high-calorie fruits like avocados? My family routinely comments on the vast quantities of vegetables and fruit I eat but also wonder where I get my calories from. But I'm partial to pumpkin seeds, yams, and walnuts, which helps a lot.
I find that the joint pain I have due to my connective tissue disorder bothers me less when I avoid dairy. I also find that the gastroparesis that comes with my CTD is less of a problem when I avoid gluten-containing grains. But YMMV here.
There was a great farmers market where I lived in Cali. I do miss that, though overall I live the Seattle area where I now live.
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- Sandi
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