No brainer!!! How to help Wegeners...

[aewaustin]

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

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]

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]

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.

[aewaustin]

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]

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]

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]

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]

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]

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]

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.