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    Default How to tell if dietary changes are effective

    When my 15 year old was in the hospital someone sent us an article about anti-inflammatory diets. It is hard at 15 (and would be for me) to be motivated to change your diet drastically, to give up entire food categories that you like, if you can't tell if it would really make a difference.

    My daughter's lab work is normal now (except protein in the UA-+1 or trace) and the creatinine/protein ratio(I think that is the name of it) which is 1.1. Also B cells are 0 from rituximab. And she feels great. It seems like it would be hard to tell if the diet was helping anything.

    How do people know that these diets are helping?

    Thanks,
    mater

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    I'll offer a few thoughts for what they're worth...

    About two years ago, my daughter was working for a chiropractor who specialized in nutrition. Reluctantly, I went to see him. The part of dealing with him that I didn't like was all the supplements he put me on. The thing I liked were his thoughts about food. His basic message was just eat real food. I eliminated processed foods, low fat foods, and sweetened drinks. While on the supplements for about two months, I lost about 7 pounds. Since getting off supplements, my weight has been stable in the high 170s.

    My wife and I continue to eat healthier. We eat more fresh fruits and vegetables. We eat more (but still not enough) oily fish (salmon and tuna). We drink whole milk. We avoid low fat and diet products. We use real butter and EVOO more.

    I exercise regularly. I walk 2-3 miles 2-3x weekly. Next week, I'll be back in the pool. (Spent the last six weeks in dry dock after having three teeth pulled.)

    The sum total of all this? I feel the same as before I got sick (read very well). My labs are stable and pretty much normal. My creatinine is a little high reflective of kidney damage from my 2013 mini flare. My BP is up to the point (averaging 155/90) where I need more help to control it. Seeing my PCP later today to discuss. Hypertension runs in my family, so it's not a surprise.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    We have gone through this dilemma with our kids. First, teens are often hungry lol, then add Prednisone and wow! Of course at diagnosis our daughter needed to gain weight too. But then over the last three and a half years as we have learned more about dealing with WG, and then began addressing joint pain in another of our children, diet has become more of a focus for us. I think Sangye (am I spelling that right??) had some great posts on the forum about that - specifically where she talked about "hot" and "cold" foods - and that really started my thinking. Going to Juvenile Arthritis Foundation conferences and support groups taught us some more, basically reinforcing most of what Sangye had said. And then lastly, we wound up working with an acupuncturist who taught us about diet too. For our two kids we have done some restrictions - or suggested restrictions - as far as refined sugar and gluten. I say we are a low-gluten household. Especially for our youngest who needs to eat a lot, I personally don't feel comfortable saying no gluten at all. But I think it's pretty clear to all of us that a low gluten diet for actually all of us helps our energy levels as well as making aches and pains minimized.

    As far as how to tell if diet is working - I have heard a wide spectrum of opinion on this. I didn't think I'd be able to tell anything with a kid on Prednisone, and other than that I just figured about three weeks of a modified diet before I would make any judgements as to its efficacy.

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    Just a note: any diet can't replace the treatment for wg.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Pete and Alysia are both on spot... Simply eat healthy. There's no substitute for eating good food. I can't say one way or another if processed food hurts you, but if you cut it out of your diet, that certainly won't hurt.

    Gluten, however, is another issue. Only one disease that I know of (celiac disease) requires a gluten free diet. Anyone else who goes gluten free might actually be harming themselves. Google "gluten free diet dangers" and see what you come up with. BTW, totally ignore any study that isn't done by a good credible institution, such as Mayo, major universities, NIH, etc.

    "No Gluten" is a marketing bonanza for the food industry. They can take a product that never did have gluten in it, advertise it as gluten free, mark it up 50%, and reap the rewards. Generally speaking, you are wasting money if you go down the no gluten path. As always, check with your doctor. As Alysia said, there is no substitute for good normal medical care when it comes to wegs. Don't go with the fadish stuff.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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    Has anybody tried the Banting diet? It is a low-carbohydrate, high-fat (LCHF) diet.

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    Default Re: How to tell if dietary changes are effective

    Vdub said it loud and clear 11-15-16. Food fads come and go. I have friends who are retired RD’s. And oh the stories! Common sense tells us what is good and bad for our health. BUT, I must get my two cents in.There is NO food cure for Wegeners. It is a vile, dangerous disease. Alysia has lost a dearly loved one to it. Others have spent months in hospital.
    Our lives and the lives of our loved ones have changed. Honestly, a Friggin Food Cure!
    We may not be doctors, but we encourage each other to go and ask questions. This site has been my lifeline and my information center. I hear good stories of remission, vacations, normalcy resumed all after traditional treatment. There is good medicine available to us. Some may not have the means for it, but others have given them resources to turn.
    One recent trick an RN told me about when I was complying about my pie face-tumeric. Loud and clear, this is not to replace your steroid, it is to be used to bring the puff down. I have been using it, not a miracle, but it helps.
    Like so many of you have said there are foods to avoid while on Prednisone. I avoid all fast food, fried food, limit red meat. When it comes to sweets, I do not deny completely. For me it is better to have an occasional cupcake, than deny myself and go haywire with a dozen. Sweets and steroids are a bad match, so I only take protein prior to Prednisone. If pasta, potatoes and rice are in your DNA, then use moderation.
    JUST ME, since you have been on this site for two years, then you know what we are all about. We have opened our hearts to each other and given counsel. Since you ‘know this forum to be pretty stren for those who choose a different course of action.’ Your words verbatim. Then why are you here?

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