Gluten Free Diet

[MCC]

Do any of you have experience of a gluten free diet 'helping' with Wegeners?

A friend of a friend who is a doctor who specialises in disease prevention through healthy nutrition suggested it. I'm not sure how exactly she thinks it would help though. I don't really want to try it as I am already vegan and don't want to restrict my diet further so thought I'd see what you guys thought!

She also suggested high dosages of Vitamin D.

[elephant]

I heard of that too, but I don't want to restrict my diet too. I thought about trying it for a couple of months, but too busy trying to manage everything else. I think many of us need to get back to eating whole foods...baking a sweet potato, eating a orange, steamed broccoli, handful of walnuts, bowl of oatmeal with blueberries, ...sorry I love talking about food.

[Natalie]

Never thought of changing my diet . I did ask a imuneoligist once if I shoud avoide any foods and he said Mushrooms ? . I have avoided them since . loved mushrooms but stay clear of them now . I have had a few since but not many . I couldnt do the whole glutin free thing . love food to much :)

[MCC]

hehee Elephant! Me too, sometimes I wish I could go back to my pre diagnosis days where I felt too ill to be bothered with food.

[Sangye]

Avoiding gluten only helps if you are sensitive to gluten. If you are and continue to eat it, it's a chronic assault on the immune system. Autoimmune diseases have been linked to undiagnosed gluten sensitivity in some people-- enough that it's worth checking. The best way to check is avoid all gluten for at least 2 weeks. You have to be extremely careful not to have the slightest exposure. Check online for a complete list of foods to avoid. If you feel better after 2 weeks, you probably have a sensitivity. If not, probably not. Symptoms that may improve can be anything from post-nasal drip to joint pain to fatigue. Keep a daily journal of symptoms to help you.

Elephant's suggestion of eating whole foods is excellent. Also, following an Anti-inflammatory diet really helps. It won't cure Wegs, but it can decrease many symptoms and possibly keep us from flaring.

[MCC]

Thanks Sangye. Perhaps it is unnecessary for me as I don't have any noticeable symptoms. I got some anti-inflammatory diet info from a Wegener's diet forum.

Do you think the vitamin D is necessary?

[elephant]

I might just try the gluten free diet for two weeks. I better start Monday, and see. I will let you guys know what I ate everyday and how I am doing. I know it will be fruits, veggies, gluten free bread. I will try it. I can't believe I just committed myself. I can always back out right??? Whole Foods store here I come.

[Sangye]

LOL--Elephant, we all witnessed it, too. :D

Double check an internet list of foods containing gluten. I'm always surprised by some of them on the list.

Mandy--supplementing vitamin D is necessary for many people. Even if your blood work shows "normal" levels, it might be on the low side. There is strong correlation between low vitamin D levels and high amounts of pain. Also, vitamin D is protective against flu.

[elephant]

Yes, I will post what I ate and how I feel. Starting Monday. Mondays are always a good day to start your diet! :)

[Sangye]

LOL-- the best day to start a diet is always any day but today. :D

[DEE]

can u get gluten free triple choc muffins Elephant ? DEEx

[elephant]

I would have to make them, but it would be very hard to make. Gluten free flour???? I know gluten is a protein in many products. So this diet will be very hard to stay on but I am determined to do it. I will try to make the triple chocolate muffins Monday and let you know if there are doable. :)

[Sangye]

I'm not sure, but I think Dee was asking that tongue-in-(chocolate-coated) cheek. :D

[MCC]

LOL--Elephant, we all witnessed it, too. :D

Double check an internet list of foods containing gluten. I'm always surprised by some of them on the list.

Mandy--supplementing vitamin D is necessary for many people. Even if your blood work shows "normal" levels, it might be on the low side. There is strong correlation between low vitamin D levels and high amounts of pain. Also, vitamin D is protective against flu.

Thanks Sangye, I will get a supplement. My colleague suggested I just sit out in the sun everyday but I can't do that soon as I start azathioprine on Friday :(

Elephant I am interested to see how you get on. I like fake meats which are entirely 'wheat gluten' so I am really loathe to try going gluten free!

[elephant]

I will be going to "Whole Foods", to get many of my gluten free products. I am really getting interest in starting this.

[Sangye]

Mandy-- even people who get lots of sun are often vitamin D deficient. Several reasons for that. Sunscreens are a big one. Also, essential fatty acid deficiency (very common) interferes with calcium and vitamin D balance.

[Col 23]

I know when your on Methotrexate they advise to stay out of the sun. I also have heard about gluten free diet also a high fibre diet being beneficial.
Col 23

[elephant]

Hey guys I am backing out doing the Gluten free diet. I am going to try it one of these days. I am going to " whole foods" and the thought of not having a muffin...kinda threw me over board!

[DEE]

thats cool by me MUFFINS rule !!!!!!!!!!!! forget fruit scones not the same:) DEEx

[Sangye]

Elephant, that's really funny. Muffins are powerful stuff. :D

[elephant]

I went to " Whole Foods" and they have gluten free muffins, bread, waffles,bagels......but I was afraid to try them. I think I will try them Wednesday and they are OK then I can start the diet. How pathetic is that....because of my addiction to their muffins!!

[DEE]

did someone say muffins !!!!!!!!!!!!!! DEEx

[elephant]

Wow Dee, I am mesmerized by your beauty! Excuse me while I get up and get a beach towel to wipe my mouth. Oh, I need another one to wrap around my chin. Oh, so much better.....still looking at it.....sniff, snifff.......

[Col 23]

Dee,Thats not fair. Im drooling at the mouth. Imagine when I see that cake in the early hours of the morning, I will be raiding the pantry. I hope your got
to have some of that.
Col 23

[Sangye]

LOL-- we're all like little kids at a birthday party, when they see all the goodies and get giggly and silly even before eating them! :D

[elephant]

Then Sangye, we need to have a "Birthday party" every day! We need to giggle and be silly to keep us sane!

[DEE]

muffins all round on Sunday its a year since offical dxt and i will have completed a years treatment hopefully with some good news from wg consult on thursday.
although feeling shattered today and i cant say i done much other than walk to top of street to doctors for INR test
where nurse reminde me to keep an eye on Vitamin k intake
when i looked on internet vit k was in alot of things that i like and things i did nt know had alot of it in
if that makes sense
maybe i should have a sleep a talk later :) having to think to hard to write !!!!!!!!!!!! DEEx

[Sangye]

Dee, when you wake up, please go read the posts in the Blood Clots and Wegs thread. Your docs should NOT be telling you to limit vitamin K foods--those are healthy foods that prevent diseases like cancer. They should be adjusting the coumadin to your diet, not the other way around.

[MCC]

I am thinking about giving it a go again now as I've been reading more about the links between autoimmune diseases and gluten and it's not good!

I found this on a website ' Some doctors have found that a higher than normal percentage of patients with autoimmune disorders are allergic to gluten/gliadin and dairy products. Complete avoidance should be tried for at least one month to see if benefits will occur.'

There are lots of references on the net about gluten and vascilitis and gluten and autoimmune disorders.

[Sangye]

The only way you'll know is to try it!

[MCC]

But I don't know how I'd measure if it was having a good effect anyway, as I don't have any symptoms :s

[Sangye]

Keep a daily journal of how you feel physically and emotionally. Include energy level, quality of sleep and mental clarity. Even without symptoms to begin with, if you have a food sensitivity you will notice improvements in various areas. My patients often said they had less mucus or increased energy levels, etc... even when they hadn't noticed a problem with them before.

[elephant]

Good for you Mandy! My cousin has three daughter that have celiac disease. So the whole family eats gluten free. They go to "Whole foods" to buy their bread products of course gluten free. I probably should try it too, but not now....mabey tomorrow or the next week. :)

[Lola]

Hahaha, Elephant. You have too much on your plate to start something new right now. You need some down time, I'm thinking.

[MCC]

I thought I would reserect (can't spell it though!!) this thread seeing as I never did go gluten free :blushing: but I am going to try it for two weeks starting tomorrow.

My reasons are I would like to lose some weight, I think it would be better for me (force me to eat more wholefoods) and it can't do any harm to cut down on the amount of bread I am eating! I will report back :)

[pberggren1]

Let us know how this works for you Mandy.

[Sangye]

That's great, Mandy. I've recently cut out grains almost entirely. Not just gluten, but all grains. I have them a couple times a week. I've noticed a big improvement in some areas.

[MCC]

Thanks for the encouragement guys.

Was there a reason for cutting out all grains Sangye? I intend to still eat quinoa and rice. I suppose quinoa isn't technically a grain is it anyway?

My menu today:
Fruit and nuts for breakfast and snacks
Salad for lunch (huge one, not just limp lettuce and tomato!)
Gluten free pasta and homemade tomato aubergine sauce

[NicShaf]

I thought I would reserect (can't spell it though!!) this thread seeing as I never did go gluten free :blushing: but I am going to try it for two weeks starting tomorrow.

My reasons are I would like to lose some weight, I think it would be better for me (force me to eat more wholefoods) and it can't do any harm to cut down on the amount of bread I am eating! I will report back :)


Mandy, just be careful with the calories on some gluten free products. I think in recent years its become somewhat of a fad, and a lot of the foods that are gluten free have more calories than their gluten counterparts.
Good luck to you, I can't wait to hear how it goes:)

[Sangye]

Thanks for the encouragement guys.

Was there a reason for cutting out all grains Sangye? I intend to still eat quinoa and rice. I suppose quinoa isn't technically a grain is it anyway?


I've been having digestive problems for awhile and they got MUCH worse the past few months. As soon as I ate anything I'd get diarrhea. I was becoming afraid to eat! I was also developing a facial rash that looked exactly like rosacea. It burned just like rosacea. Dr Seo thought it was rosacea. It got so bad and my skin quality looked awful. It was only by a fluke that I cut out oats one morning and then didn't have diarrhea all day. At first I though it was an oat allergy but other grains caused problems, too. Even rice. If I soak the grains (http://www.thenourishinggourmet.com/2008/03/nourishing-practices-soaking-grains-2.html) they're fine. But since I (mostly) stopped eating them, my face has cleared up entirely and my gut is better (it still isn't quite right--trying to pin down what's happening). I also dropped 6 lbs in 2 weeks. I wasn't on a low-carb diet-- it was fluid accumulated from a sensitivity to grains.

[MCC]

Hey that's good it's had such a great effect Sangye.

Thanks Nic I'll watch out for that.

[elephant]

Are you getting any blood work to see if you have Celiac disease? Are you on a low fiber diet now?

[Sangye]

Elephant, if you're asking me... yup, Celiac testing has been (-) several times. Besides, it's not just gluten grains, it's all of them. It isn't a fiber issue since I do well on veggies, fruit and tubers like potatoes and cassava.

[pberggren1]

what is cassava?

[Sangye]

I could tell you, but it would spoil the fun of Googling it. :wink1:

[pberggren1]

that damn google guy had to come again. lol

[Sangye]

Even though the Google search box is exactly the size of a post-it note, the space is actually not just for posting reminder notes. LOL

[elephant]

Do you think the RtX changes somethings in your intestines?

[Sangye]

I have no idea. I think the diarrhea has been increasing for awhile. By the time it got really bad I couldn't remember the last time I had a "proper" bm.

I do know I've become very sensitive to mosquito bites since rtx and now it's really bad. I was always a bit sensitive before. But now I get one bite and it turns into a HUGE welt. The entire area swells up for many days. The only thing that helps it is a homeopathic remedy called Sssssting Stop.

[elephant]

Same here Sangye, my bites are three times bigger than the average person's mosquito bites! It takes two weeks to go away!

[Sangye]

This happened twice in the last 3 weeks: a tiny bite on the back of my hand caused my entire hand to swell up. I have one bite on my leg and the welt is the size of a plum!

[Psyborg]

Are we more susceptable to allergies than we were pre-medication? I ask because I had extremely mild allergies before that never impacted my skin. Now (I believe) at least part of my rash issues are allergen related, but I never had any treatable allergies before seems strange to develop one now.

[Sangye]

I never had any allergies at all. During my first year on Wegs drugs I became highly allergic to adhesives like in bandages. Last year I became allergic to aloe. And now my body is having this reaction to mosquito bites. It makes sense from a holistic medicine point of view, in which allergies are considered to be the result of a dysregulated immune system.

[Natalie]

I too now get a reaction to the tapes adhesives , mozzies have always loves to suck my blood but I don't come up in welts when they bite me ..
when I first started on the drugs I was on bactrum and got a big rash supposedly from the sulfa content . But Last year when I was having trouble with healing my wound We tryed Magnoplasm which is a drawing ointment made of sulfa and i had not trouble with it . ?? I wonder if it was the Bacterium I was allergic too or something else ? .