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View Full Version : No brainer!!! How to help Wegeners...



aewaustin
06-25-2014, 01:18 PM
All,

I just want to shout this, ya'll have to check out Paleo. It is a no brainer for folks like us with auto-immune issues. Eating dairy and grains just aggravates the immune system. You really want to be poking a sleeping bear once Wegs is in remission???

Found this link, the bottom post is for someone with Wegneners Wegener's Granulomatosis | Mark's Daily Apple Health and Fitness Forum page (http://www.marksdailyapple.com/forum/thread66239.html)

From my experience now that I cut out grains and dairy I find that I get immediately sick when eating them, that tells me that they are no bueno for me. My sleep also greatly improved once going gluten free, which is what I first started with.

Anyway I just read things on the forum and can not believe that folks don't talk about the most natural way to help themselves.

For reference check out these two books, in my opinion they are the best out there for Paleo understanding and recipe ideas.
Amazon.com: Practical Paleo: A Customized Approach to Health and a Whole-Foods Lifestyle eBook: Diane Sanfilippo, Robb Wolf, Bill Staley: Kindle Store (http://smile.amazon.com/Practical-Paleo-Customized-Whole-Foods-Lifestyle-ebook/dp/B008THOQVA/ref=sr_1_1?ie=UTF8&qid=1403666168&sr=8-1&keywords=practical+paleo)

Against All Grain: Delectable Paleo Recipes to Eat Well & Feel Great: Danielle Walker: 9781936608362: Amazon.com: Books (http://smile.amazon.com/Against-All-Grain-Delectable-Recipes/dp/1936608367/ref=tmm_pap_title_0?ie=UTF8&qid=1403666168&sr=8-8)

Ok rant over. But this is dead simple. And this comes from a Big Mac loving girl that was not all that healthy but I stick to this because I truly think that it will help me avoid flares, and because I get so dang sick when I eat what is not good for me.

Geoff
06-27-2014, 06:26 AM
I have to agree as I believe I am Wheat intolerant, and whether or not this is a by product of WG, or which came first I dont know.
I am frantically researching all I can and cannot thank you enough for these links :rolleyes1:

LisaT
06-27-2014, 10:09 AM
I too get sick with wheat and dairy. Dairy is immediate, wheat more of a delayed reaction. It's very sad. I miss pizza. Even more, I miss applewood smoked cheddar on slides of crusty baguette... :drool::drool: Some day hopefully very far in the future, when my end is near, I will ask for a big platter of cheeses and Hoover them all down when it doesn't matter any more. In the meantime, thanks for the helpful info!

murmur
06-28-2014, 12:13 AM
Ive been eating paleo for a few months now and it really helps. Also gluton free works.

LisaT
06-28-2014, 12:17 AM
Ive been eating paleo for a few months now and it really helps. Also gluton free works.

I'm still confused about meat... Paleo seems to include a lot of it, yet the anti-inflammatory diet suggests really limiting at least red meat. I'm trying to just eat it infrequently. What's your take on meat? Have you cut out all grains or just those with gluten? I'm still trying to fine-tune this... And some day cut out the gummy sour candies...

aewaustin
07-01-2014, 05:37 AM
LisaT - Paleo has meat, but others say not to eat it. Just depends on who you listen to. Really have to find what works for your body because one thing will tell you no red meat and one will tell you it is great. Paleo is basically cutting out dairy and grains which can inflame the immune system.

Yvonnea
07-01-2014, 06:18 AM
Couldn't agree with you more aewaustin (http://www.wegeners-granulomatosis.com/forum/members/aewaustin.html)! :thumbsup: I have been following the Paleo diet for the past three years and it has really helped me.
Lost the steroid weight and managed to stay in remission...with a just few hiccups now and then....but so much better than I was before.
And I too loved my big macs and pizzas.

Bing505z
07-03-2014, 12:59 PM
I eat pizza and Big Macs every now and then with no problems. "MY" Granulomatosis with polyangiitis must agree with me orI must have a "different version" of the disease or I just do nothave "other conditions or diseases”. Hmmm how bizarre. So bewildering.

Hopeful
07-03-2014, 03:03 PM
My belief - and there is no scientific evidence to support it - is that there are perhaps 3 different optimal eating patterns, and that one pattern can "borrow" a little bit from another. I came to this conclusion by watching my family. People naturally gravitate to particular foods to comprise most of their diet (we're not talking cravings here). My husband is of Norwegian heritage and he eats fish, particularly salmon, all the time. He does not care for grains, greens, chooks, or root vegetables. He'll eat them but would rather not. I know, it doesn't appear healthy, but he eats lots of fruit, and he likes green salads, and he thrives on it. I call his type of eating "Fisherman". Me? I can't stand fish, unless it's fish and chips! But I thrive on a "Farmer" diet - the grains, greens, chooks, root veg. My heritage is Scottish/German farmers. My daughter likes it all, but eats mostly "Vegetarian" and red meat (meat only because she cannot absorb enough iron). We three all borrow a bit from each others' diets, but what we borrow is small compared to our basic "Fisherman", "Farmer", or "Vegetarian" eating pattern. I have observed my parents and grandparents, and my in-laws. Each person eats/ate according to their individual type and both families are very long-lived (85-104 years).
Just thought I'd toss this out into the ether. It's just my speculation. Scientists are doing research on this all the time.

MCC
07-05-2014, 08:32 AM
Paleo is much too meat heavy and will increase cholesterol ?Paleo? Diet Leads to Worsening Cholesterol | Physicians Committee (http://www.pcrm.org/health/medNews/paleo-diet-leads-to-worsening-cholesterol).

Vegan is the best diet IMO. Watch food matters FOODMATTERS® | Natural Health & Nutrition | FOODMATTERS® (http://foodmatters.tv/)

Don't make it all about you though - vegan is better for the animals whose life you don't take and the environment also. A win all round.

aewaustin
07-05-2014, 10:57 PM
Two comments:

A. What we are comfortable with does not really matter much. I am very much a grain based person, but grains are proven to increase your immune system activity (especially gluten) so I sacrifice some to do anything I can to prevent a flare.

B. Saying that a Vegan diet is the best diet is kinda odd, it might be the best for you, but meat is a huge part of what I can eat, of what gives me substance and what helps my muscles for working out. My body would be totally lethargic without meat. (I don't think that study has merit, just not what has been shown generally, most peoples numbers turn around in a great way) Check out the stories in this blog, which is the best resource in the community for Paleo Success Story Summaries | Mark's Daily Apple - Part 2 (http://www.marksdailyapple.com/category/success-story-summaries/page/2/#axzz36b9UXWTs)

The point of this post is to show that DAIRY and GRAINS are hard for the body to digest and therefore cause auto-immune issues, this is all common knowledge. And to throw out ideas and comments on how eating that way has helped you out or your resources to help others with this.

I KNOW there are TONS of ways of eating out there. What I am focused on is the way that is most helpful and healthy for those with auto-immune issues. Unfortunately for us eliminating Grains and Dairy is a great way to help our bodies, even if we just don't want to. Took me years to get to this point, I just didn't want to, too hard. But it does make a difference if you are willing to help our your body.

Just last night I got gluten by mistake, must have been on my fries which were cross contaminated, stomach got upset and I got a headache which I still have this morning. Once you go totally GF you realize how bad it is for your body once you accidentally get it. Kinda crazy though, now I am tracking sleep with fitbit and my sleep has been improved dramatically by doing a few easy things, but after having gluten last night my sleep was as bad as it was before making all the changes.

Ok anyway, my rant. Not here to chat about tons of diets, but more to focus on how to prevent a flare by eating foods that work for us.

LisaT
07-06-2014, 12:09 AM
My belief - and there is no scientific evidence to support it - is that there are perhaps 3 different optimal eating patterns, and that one pattern can "borrow" a little bit from another. I came to this conclusion by watching my family. People naturally gravitate to particular foods to comprise most of their diet (we're not talking cravings here). My husband is of Norwegian heritage and he eats fish, particularly salmon, all the time. He does not care for grains, greens, chooks, or root vegetables. He'll eat them but would rather not. I know, it doesn't appear healthy, but he eats lots of fruit, and he likes green salads, and he thrives on it. I call his type of eating "Fisherman". Me? I can't stand fish, unless it's fish and chips! But I thrive on a "Farmer" diet - the grains, greens, chooks, root veg. My heritage is Scottish/German farmers. My daughter likes it all, but eats mostly "Vegetarian" and red meat (meat only because she cannot absorb enough iron). We three all borrow a bit from each others' diets, but what we borrow is small compared to our basic "Fisherman", "Farmer", or "Vegetarian" eating pattern. I have observed my parents and grandparents, and my in-laws. Each person eats/ate according to their individual type and both families are very long-lived (85-104 years).
Just thought I'd toss this out into the ether. It's just my speculation. Scientists are doing research on this all the time.

I wonder if these conform with the blood-type diet that I've been meaning to read up on… Keep forgetting to ask my mom to remind me my blood type. Can you believe I'm 45 and don't know my own blood type? I've been anemic forever so it's not like i've ever been able to donate...

LisaT
07-06-2014, 12:14 AM
MCC, do you eat grains? Legumes? I'm told paleo also says no legumes. So much different information out there it's hard to know which is correct. I lean towards vegetarianism in my mind and heart, but then I get really hungry and my carnivorous body takes over… I find it hard to get enough protein and iron with no meat, no dairy… I've never liked eggs or very much fish. Any tips would be welcome. Unfortunately, I'm surrounded by meat-eaters for whom I must provide meals, but I'm hoping that the more I make yummy veg dishes the less they will miss what they consider a 'main' dish (in my family of origin and for my hubby and kids, there seems to be a presumption that only meat or fish constitutes a main dish. This is also how I learned to cook the limited repertoire of meals I make decently. If only I could eat the veggie meat substitutes, but alas, they're all made with wheat.) My ears and mind are open to whatever you can share. :confused1:

aewaustin
07-06-2014, 12:51 AM
LisaT - For me I just stick to the no grains/dairy rule, mostly, because of the auto-immune response. After that everything is ok (in my book), even if Paleo says no. Basically I am doing this to reduce the auto-immune reaction to foods. Paleo seems to be the way of eating that reduces that auto-immune response the most. If I were you I would just research the food and see if it has a big autoimmune response. To help with this I would read the Practical Paleo book, it says what foods are high on the immune system response and what ones are ideal. Our "superfood" is bone broth :)

aewaustin
07-06-2014, 12:56 AM
One other comment. I also tried the blood type diet for awhile, while also trying to avoid dairy/grains. It finally occurred to me that my ultimate goal was to put my autoimmune system in check. Trying to do Paleo and then blood type just made it hard to eat anything. My biggest advice is to cut out grains and dairy and then go from there on the others.

ALSO please do not go out and get a blood type test for food intolorances. They are expensive and for those with leaky guy, which almost all auto-immune folks have, the results are wrong. I was all gung ho to go get one and then my nutritionist said it would be throwing money out the window. I am working on fixing my leaky gut through my holistic doc, but it can take a year or more. But would love to take the test and get definitive answers on something...

drz
07-06-2014, 09:01 AM
I wonder if these conform with the blood-type diet that I've been meaning to read up on… Keep forgetting to ask my mom to remind me my blood type. Can you believe I'm 45 and don't know my own blood type? I've been anemic forever so it's not like i've ever been able to donate...

Have you ever needed a transfusion? When I was anemic I needed many so it was important to know my blood type.

lag713
07-09-2014, 01:55 AM
My rheumatologist recommended the mediterranean diet. I know dairy and processed grains are not great for inflammation but I think I would have too much trouble giving it up. A life without picnics of bread, cheese, wine, and fruit? So sad. I already can't have wine because of mtx.

I consider it a good day when I have more vegetables and fruit than average. The CDC reports that 5+ servings of vegetables and fruit daily is associated with a decreased risk in cancer.

aewaustin
09-16-2014, 06:29 AM
Guys please realize that while we might like wheat/dairy these cause inflammation, so it is basically to choose between having wegeners or having bread. I know that sounds extreme, but reducing inflammation is key. I have done extensive research on this and am 100% convinced that we can contribute greatly to keeping wegs in remission by diet. Serious no brainer. Now I am one of the folks that has to go through the full on high dose CTX, lose my hair, chemo to control wegs. So I might be more highly motivated to do anything possible to keep it at bay. But just know that just because we like bread, hell I LOVED bread, does not mean that it is not greatly harming your body.

Gluten NEVER bothered me, ever. But now since my gut has started healing and absorbs more, eating just a bit of gluten in a broth makes me sick and dragging for days.

There is so much that I have learned in the past two years about nutrition that just makes me a total convert. And this is coming from someone that eats like a 10 year old boy, loved big macs, pizza, etc, but keeping wegs at bay is more important.

Anyway, I think I am becoming the crazy on here, but just think that the diet changes can help out so many. Some folks believe that anyone with an autoimmune disease has leaky gut and therefore folks with autoimmune should all be doing things to modify their diets. Healing a leaky gut takes years, and I am still not there yet, so that is why I keep preaching on here, because from the time folks "get it" there is still a journey of years to get healed up.

Wegetarian
09-17-2014, 12:34 AM
My rheumatologist recommended the mediterranean diet.

Mine too, but also said that there really hadn't been any evidence of the diets affecting the disease. I mean if Paleo would be a miracle cure for Wegs then it should be pretty quick to notice. Why use CTX and other poisons if you could fix everything with just cutting off the wheat.

However I do try to choose gluten-free alternatives. I heard having an auto-immunity disorders makes it 4x as likely to develop another one, so a this dietary expert suggested it might be a good idea to be a bit wary of gluten. I haven't really noticed a change if I eat regular pasta or gluten-free pasta, the former just tastes a lot better :)

That said I've tried to cut down on my grain intake and instead it more fresh fruit and vegetables as I'm on a high pred dose and don't want to go up 15kg like I did last time I was on high dosage. Been a vegetarian since the age of 5 so no meat or fish.

Alias
09-17-2014, 07:14 AM
My rheumatologist recommended the mediterranean diet. I know dairy and processed grains are not great for inflammation but I think I would have too much trouble giving it up. A life without picnics of bread, cheese, wine, and fruit? So sad. I already can't have wine because of mtx.

I consider it a good day when I have more vegetables and fruit than average. The CDC reports that 5+ servings of vegetables and fruit daily is associated with a decreased risk in cancer.

I am totally with you lag713. The only medical advice I have gotten regarding diet and this illness is to eat a balanced, healthy diet that agrees with me. I've not had to change much of anything. (I did develop one odd sensitivity - I used to sometimes drink coffee, but now it makes me violently ill.) I have boosted my intake of natural anti inflammatory ingredients in my meals, such as fresh ginger, garlic, onions, hot peppers, turmeric.... Fortunately I already like all that stuff! Who knows if it really helps or not? As long as I am feeling OK, my picnics will include bread, cheese, fruit, and even a glass of wine.

aewaustin
09-30-2014, 01:15 AM
One way to check your gut is to see what your ALP and B12 numbers are, if they are both low then it is a sign that your gut has issues and that you are not absorbing foods.

JeanMarie
09-30-2014, 05:20 AM
Another vegan here, we seem to be the minority. I changed 2 yrs ago, wegs didn't have much to do with it. My reasons were the environment & the state of agriculture in the US. I grew up on a small farm & nobody ever got sick on our veggies or Mom's eggs. Now, you hear about food born disease outbreaks every year. I don't even want to get started about animal treatment. Let's just say farmers a generation ago would freak out if they could see a factory farm now.

I eat wheat, however, the wheat we eat today is not the same wheat our grandparents ate, so I think a lot of people could be sensitive. And beef-have we forgotten Mad Cow disease? I'm suspicious, I think testing in the US is inadequate & if I had children now I would be afraid to give them beef. This is all just my thoroughly unscientific opinion that doesn't mean anything. All I can tell you is my change from meat & potatoes to vegan hasn't been a game changer health wise for me. Cholesterol is lower but that's about it.

aewaustin
09-30-2014, 06:48 AM
I actually just got the Alcat food testing done, and curious to see if it helps my neuropathy/overall health. Been trying to figure out what is going on because just going gluten free did not help. The Alcat showed that I do have issues with gluten/dairy/chicken/garlic/paprika/rasberries and a few others. Crossing fingers that I have finally put my finger on what is causing me to not absorb food and hoping I get better energy. Highly recommend the testing, it is expensive, but I have several friends that have had great success with it.

marta
10-03-2014, 06:24 AM
Totally with you on this Anna. I have made my whole family go gluten free (well Brian still has his beers, but gotta give him kudos for playing along in the first place) and we're trying to go sugar free. This book is quite interesting, and full of data from huge studies, so if anyone says it's anecdotal this book tells a different story. http://www.amazon.ca/Grain-Brain-Surprising-Sugar--Your-Killers/dp/031623480X/ref=sr_1_1?ie=UTF8&qid=1412279367&sr=8-1&keywords=grain+brain Here the big culprits that mess with our immune system, cause heart disease, Alzheimer's and a myriad of other chronic illnesses are - sugars and grains. In regards to cholesterol, it's what fuels our brains and a necessary part of our diet, but mixed with sugar it becomes toxic. Sugar (and the more complex version of it grain carbs) can pass through the blood brain barrier and attach to our opiate receptors, triggering a similar feeling as a drug addict getting his fix. That in itself is a big reason that people have such a hard time giving up bread. I totally feel like I need a fix when I walk by the bakery of the grocery store, but the longer I've been off bread, the easier it seems to pass it by.

The other thing that makes changing difficult is the ease with which you can prepare a meal surrounding grain. Put a pasta together with pretty much anything in the fridge and you've got a meal. Sandwiches for lunch. They're easy defaults because they're so easy. It's tricky at first to have stuff that's easy to put together, but just like any adjustment, it takes a bit of time and then it's easy(er.) I still have days where I wish I could just throw a pasta together. But sandwiches, as an option, are now out of my mind completely. I do occasionally cheat (Grab a Big Mac... once in a Blue Moon) and I don't feel great afterward but I don't feel terrible either.

I just know this dietary change is good for me, so that's why I'm trying to stick with it - best I can. Despite the tricky factor.

annekat
10-04-2014, 05:26 AM
If I have a loaf of bread around and I'm too busy to prepare a meal, I will eat toast with peanut butter on it all day. And yes, the bread is addicting. So the trick is to not buy the bread, period! I have felt so much better since stopping buying bread. Once in awhile, I'll lose my self-discipline, and buy a loaf, and eat it until it's gone. BAD! I feel it, for sure. As for other grains, I think about those, too, but mainly the ones with gluten in them.... I'm not above having a little pasta once in while, but have done pretty well at avoiding it. As for snacks, rice cakes with peanut butter, or other nut butters, aren't bad. Good for you, Marta, getting your family on board. Interesting explanation, too, about the opiate receptors in our brains, and all. Thanks.