How to tell if dietary changes are effective

[mater]

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

[Pete]

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.

[whatthewhat]

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.

[Alysia]

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

[vdub]

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.

[Marius]

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

[me2]

I have not tried the Banting diet. I have tried many other diets and supplements with great commitment. Here is my current thinking.

When on a good basic diet of any sort that avoids processed foods and is rich in whole natural foods I tend to feel better. A good diet supports general health. The problem is that someone (like me) may then make the mistake of thinking that because I am feeling improved that I am also having an effect on my underlying Wegener's disease. This is a big mistake that I have made several times. '
I have yet to find a diet or supplement that can treat the root cause of Wegener's disease. It is possible that one exists but Wegener's is simply too dangerous and fast moving to take chances with.
I think a good diet can possibly reduce the chance of flare up once the disease is under control by keeping inflammation reduced. I also think supporting general health helps one to be stronger when getting sick or recovering from a flare. Eating healthy is very important but it is not a solution in my opinion. I know one other person who attempted to treat Wegener's with natural medicine and suffered terribly like me.

[JustMe]

I am on a strict anti-inflammatory diet and have chosen to treat this without meds. I know this forum seems to be pretty stern for those who choose a different course of action; hence my hesitation to post even though I joined almost two years ago, but I want to let others know we are out here.

[Alysia]

I am on a strict anti-inflammatory diet and have chosen to treat this without meds. I know this forum seems to be pretty stern for those who choose a different course of action; hence my hesitation to post even though I joined almost two years ago, but I want to let others know we are out here.

What do you mean by "we are out here" ? Who are "we" ?
You claim to have wg and treat it without meds but you didnt introduce yourself and didnt tell your story. How can we know that you are not a sharlatan ?
I am glad that @vdub (https://www.wegeners-granulomatosis.com/forum/member.php?u=1136), or was it @andrew (https://www.wegeners-granulomatosis.com/forum/member.php?u=1) removed your other thread yesterday. I am sorry if I sound "pretty stern" but you must understand that you cant play with WG and sure cant treat or heal it without meds. We have lost too many friends in our wg family. Wg is taking life. We cant allow "advices" like yours to hurt anyone here.

[mishb]

I did not see the other thread, but I just wanted to let everyone know how I am doing.

For the past 8 weeks I have had much better pain relief, just by a change in diet.
By avoiding all foods that trigger inflammation in me (may not be the same for you), my blood results are pretty close to the normal range now.
I'm hoping that I can get them within the normal range when I have my next test in 3 months time. We do know though, that WG is unpredictable.

I am still on 20mg Methotrexate, 200mg Plaquenil and 1mg pred and I agree with Alysia that the medications are very important.
I don't believe that my wegs is under control because my sinuses and throat are still stuffed, but the joint pain is very mild now, and can be eased more just with some paracetamol. A proper balanced diet is a must I cannot take any vitamin supplements because they affect my liver.

The foods I now avoid, if you are interested, are pasta, rice, all nightshade vegetables (which includes potato, which was my absolute favourite) and anything that is related to the citrus family, or has citric acid in the making of it (have to read those labels carefully.

[Masha]

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?

[JustMe]

Just to give an update. I'm still doing great while continuing to follow my doctor's dietary advice.