What I wish I had known two years ago... (Paleo & Gluten Free topic) [Archive] - Wegener's Granulomatosis Disease GPA Support Forum

aewaustin

10-09-2013, 01:36 PM

I have been absent from the forum for awhile, but before I dropped off I posted something about going gluten free and wanted to post an update as I have now been gluten free for 7 months.

Starting in December 2010 I had severe neuropathy in my legs, tingling and the feeling of nerves snapping. I was on painkillers and Ambien every night to sleep. After getting through my rounds of RTX and CTX I decided to go to a neurologist to figure out the nerve stuff. The doc spent about 10 minutes checking me out and told me to eliminate gluten, it was likely the cause. My research was taking me that way, and I didn't want to do it, but even more than that I did not want to be on the drug I was taking for neuropathy (Lyrica) and dependent on the Ambien to sleep. So I went gluten free. I am the person that has never been on a diet and I really like big macs and junk food, so for me to go 100% GF with no cheating is kinda a big deal.

So now 7 months later... I have screwed up but have not cheated. I have a friend that owns a GF bakery so if I really need that fix of bread I take two slices of bread out of the freezer, that I have in there for emergencies, which happens about every 2-3 weeks. After going GF I did not have some miracle when I felt so much better and it changed my life, but after about 6 weeks things slowly began to change. The sleep issue actually has changed drastically... I used to take one Ambien and wake up numerous times through the night, and about 4 months ago I started taking 1/2 Ambien and sleeping soundly through the night, which is HUGE! I am now going down slowly on my Lyrica while still only taking 1/2 Ambien a night. So for me going GF is fixing my issue. (It can take 1-2 years to reverse the nerve damage so I am happy with the progress.)

The tipping point for me to go GF was learning that for someone with autoimmune disease, eating gluten is like poking a bear. The gluten just stimulates your autoimmune system. I now have my wegs under control and I just don't want to go through the rough stuff again, so that fear of a flare is enough to keep me GF. And the fact that after being GF for two months I accidentally had gluten and it made me really sick for a day with severe flu symptoms that made me realize that gluten really does cause issues, but you just can't see them until you go 100% GF for a solid 6 weeks or more.

Other than going GF I am trying to go Paleo, a great resource for this is Mark's Daily Apple (http://www.marksdailyapple.com) , I really like the Friday stories from readers. One key to going GF, is to not to replace the GF foods with GF replacement foods, instead try to just replace it with healthier options.

I have found in my research that when your gut is screwed up then you will have issues, even if they don't seem gut related. With all the drugs that we take for Wegs it kills all the good gut stuff and that needs to be replaced, but my doc never told me about that... I seem to learn this stuff very slowly, but this year I have gone to a functional/holistic doc and she helped me to fix my gut and I know there is something to it. I have also read Wheat Belly, The Immune System Recovery Plan and Salt, Sugar, Fat and found them all interesting.

I got so much out of this forum when I was really sick and this is my way to contribute back a bit and hope that someone might find this helpful.

One thing I ask is please do not hijack this thread. It is very frustrating to find exactly the thread you need and then to have to wade through tons of posts that have nothing to do with the information that you are desperate to find. Sorry if that sounds a bit bitchy, but some folks don't realize that they do it, so I figure that putting it out there might help etiquette in the forum to make it even more useful for folks.

Best of luck and take care!

annekat

10-09-2013, 03:10 PM

Good for you, sticking with something that is difficult to do, and seeing results. I can't say I've done the same, but hearing from others who have is inspiring and educational.

A couple of months ago, a friend gave me a copy of The Immune System Recovery Plan, which you mentioned, by Dr. Susan Blum. I seem to be too tired to read much, but it is readable and interesting. There was also an article in the August 26th New Yorker magazine, a personal history by a woman with autoimmune thyroiditis, or Hashimoto's disease, called What's Wrong With Me, in which she shares her discovery of diet and gut issues as regards her illness. The only thing that disappointed me about both of these was that neither of them mentioned Wegeners or vasculitis, that I could find. Oh, well. I'm glad you have found these principles to help with your Wegs as much as people with the more well known diseases have been helped.

Thanks for sharing! Your experience gives further credence to these ideas. I think I will check out Mark's Daily Apple now!

pberggren1

10-09-2013, 04:53 PM

This is very interesting. Thank you very much.

Wegetarian

10-09-2013, 07:41 PM

Thanks for sharing! A friend of mine can't take gluten, and beer contains enough gluten to make her feel bad. Is that still OK for someone who is gluten free for wegs or do you notice symptoms if you have a few beers? Been trying to cut down on white wheat myself, but my favorite foods are lasagna, pizza and spaghetti :(

rebekah

10-09-2013, 10:15 PM

Thank you so much for sharing your experience with going gluten-free. I went GF a few months back after reading your post on here and a few articles on the subject. I recently moved so I've really been slacking, but I definitely plan on getting back to my GF diet. Thanks again for posting this to get me motivated again. :)

aewaustin

10-10-2013, 12:42 AM

Annekat check out this link, it has someone that has wegs and went Paleo Wegener's Granulomatosis | Mark's Daily Apple Health and Fitness Forum page (http://www.marksdailyapple.com/forum/thread66239.html) . And don't be disappointed when Wegs is not mentioned, it is so rare and they can't mention every single disease. I am just thankful that there are books that deal with autoimmune disease and are helping us to navigate this :)

Wegetarien for me I find that I can't have any gluten after going 100% off. So beer is out :( BUT rice pasta is awesome and I can't tell the difference between that and regular. But know that corn pasta sucks so stay away from that. Also part of the reason that you can't have any gluten is that your body reacts to it, so now I just don't want any because I know my body can't digest it properly and it makes me sick, but you can't find that out until you are 100% gluten free for at least 6 weeks. And honestly it really is not that hard. Just figure out how to get your cravings, pasta, GF and then have them on hand when needed. I make Betty Crocker GF choc chip cookies and keep them in the freezer for "emergencies" and find that I only have one every few weeks, but I have 2 and then my craving is gone. Also almond crackers are awesome for that cracker crunch.

Also I wanted to mention that I think Paleo / GF is just a no brainer for folks with auto-immune but unfortunately for Wegs I don't think it replaces our meds. For this disease I think you need a combo of western medicine and holistic stuff. This disease is just too aggressive and too unpredictable to not use the drugs that we use. In my opinion... But I have been through two rounds of this 20 years apart, with the full kidney involvement and rounds of CTX each time (along with RTX this last go round) so think I have a fairly good feel for it :)

aewaustin

10-10-2013, 12:46 AM

Rebekah - That comment made my day :) I was hesitant to post this because I did not want to see preachy, but I feel so strongly that this can help us so much that I wanted to post. I still am not all the way to perfectly healthy, but everything now is coming down to healing my gut and it takes awhile... I really do wish I had started figuring this out when I was really sick and maybe it would have helped make life better sooner.

aewaustin

10-10-2013, 12:57 AM

Wegener's Granulomatosis | Mark's Daily Apple Health and Fitness Forum page (http://www.marksdailyapple.com/forum/thread66239.html)

From a weggie that went Paleo:

"I was diagnosed with Wegener’s in 2004. I had several different medications, including methotrexate, Cytoxan, and prednisone. The methotrexate caused side effects resembling pneumonia, so I was taken off of it. I was on Cytoxan for about two more years and took prednisone at the same time.

My dosage of prednisone was steadily reduced until I was down to 2 ½ mg every other day. I recently was diagnosed with fibromyalgia and osteoarthritis, which often seems to occur in conjunction with Wegener’s. After 3 days of taking the medication, I developed side effects that were worse than the fibromyalgia so I stopped taking it. I notified my doctors and was prescribed another medication that is used for fibromyalgia. The listed side effects for this medication were even worse, so I did not start taking it.

At that point I started looking around for alternative things I could do to help my health. I started reading self-help health books. Every book I read indicated that food sensitivities could be a reason for many of my problems. Gluten and soy are two of the culprits. I went on a gluten-free and soy-free diet, which is not easy because they are in almost everything. Viola, my fibromyalgia pain disappeared! Coincidentally I am off the prednisone.

I have seen a natural health specialist and had a blood test that diagnoses my food sensitivities. It has not been returned yet, but I think that, on my own, I have unfortunately discovered that I have a sensitivity to my favorite food group – chocolate! The day after eating some chocolate I have pain in my legs. I have stopped eating chocolate and the pain in my legs is subsiding. Coincidence? I don’t know!

The thing to remember about Wegener’s is that it is inflammation of the blood vessels and food sensitivities can cause inflammation. I can’t honestly say that going on the diet helped my Wegener’s but it can’t hurt and could help. Trying it is the only way to find out. I wish I had tried it many years ago because I feel that I am getting better! What is more, I am losing the weight I have so desperately tried to lose."

annekat

10-10-2013, 04:32 AM

Aewaustin, thanks for the link to the Wegs thread on MDA... I bookmarked it. In the small amount of reading I've done, I have not found people recommending that we use these ideas as a substitute for our meds, as you say. But many of us have managed to get off the meds or reduce them to pretty low doses, so I can certainly imagine that these diet guidelines can help prevent flare-ups and just make us healthier in general and less susceptible to future problems.

As for Wegs or vasculitis not being mentioned in listing AI diseases, it just doesn't seem that rare to me when I see all the new people joining here and realize there are many people who are undiagnosed for periods of years. A part of me wonders if it is not mentioned because it is so serious that it should not be considered in the same vein as the others. But you've set my mind at ease on that, showing that we can use these diet guidelines just like anyone else and expect results. I just wish vasculitis would be included in lists of AI diseases, to further awareness of it, etc. Maybe with time.

Barbara N

10-10-2013, 06:06 AM

How do you go gluten free? What sort of things do you have to cut out of your diet? do you have a web page that explains it a bit more in detail?

annekat

10-10-2013, 06:29 AM

aewaustin

10-10-2013, 06:38 AM

Barbara - Honestly it really was not that hard, and this comes from the least likely person to succeed with a specific way of eating :) But let me give you some substitutions and see if that helps.

For:
Bread - GF bread if you have to
Crackers - Almond Nut Crackers
Pasta - Rice Pasta (not corn, it is horrible)
Pancakes - 2 eggs blended with protein powder, just a little gluten free flour and 1/2 cup applesauce or 1/2 cup pumpkin and spices (mix in blender and cook like normal pancakes)
Burger - Lettuce wrapped burger (At restaurants I just get a sandwich without bread)
Pizza - GF pizza (although can be expensive so I quit pizza)
Cookies - Make cookies with GF flour or get Betty Crocker cookie/brownie mix

I guess those are the big ones that I switched around.

Also these books are very helpful:
The G-Free Diet: A Gluten-Free Survival Guide: Elisabeth Hasselbeck: 9781599951898: Amazon.com: Books (http://www.amazon.com/G-Free-Diet-Gluten-Free-Survival-Guide/dp/1599951894/ref=la_B001NV2YCW_1_2?s=books&ie=UTF8&qid=1381343562&sr=1-2)
Practical Paleo: A Customized Approach to Health and a Whole-Foods Lifestyle: Diane Sanfilippo, Bill Staley, Robb Wolf: 9781936608751: Amazon.com: Books (http://www.amazon.com/Practical-Paleo-Customized-Whole-Foods-Lifestyle/dp/1936608758/ref=sr_1_1?s=books&ie=UTF8&qid=1381343593&sr=1-1&keywords=practical+paleo)

Also there is an autoimmune way to do Paleo, listed in Practical Paleo, and I just try to recognize that and stay away from the foods that cause inflammation.

Also I think that there is something to going closer to Paleo and not trying to replace GF foods with other grains. I am totally off wheat, but I also try to reduce all grains (oats, corn, rice) and dairy in my diet.

Is that helpful?

annekat

10-10-2013, 07:12 AM

aewaustin, I'm curious about buckwheat noodles. Obviously, they are a grain, but do they contain gluten as in wheat? However, rice noodles sound like a very good and easy sub for pasta.

Also, it sounds like you are trying to avoid even GF flour, as in freezing GF bread for "emergencies"? Why is that, and what is wrong with just eating it if it is gluten free? Or maybe I am misunderstanding something you said.

aewaustin

10-10-2013, 08:08 AM

Annekat - Not sure about buckwheat, but probably have gluten in them as wheat is in the name. Honestly not sure but I just stay away from anything with gluten/wheat. And yes, rice noodles are awesome, and Trader Joe's has them cheap.

I am trying to avoid grains and GF products generally to be more Paleo, it is hard to do, but that is the ultimate goal for me. Also the bread that my friend makes sells for $8 a loaf, so it is a bit of a luxury and that is why I use it sparingly.

Debbie C

10-10-2013, 12:10 PM

aewaustin

10-10-2013, 12:42 PM

Debra C - Basically all fruits, veggies and meat (if unprocessed) are GF and that is basically what a Paleo way of eating is. Paleo just eliminates dairy and grains.

This is a list of foods that are gluten free Gluten-Free Friday: Naturally Gluten-Free Foods and Your Grocery List (http://skinnyms.com/gluten-free-friday-naturally-gluten-free-foods-and-your-grocery-list/) and ones that have gluten What Foods Have Gluten? - American Diabetes Association® (http://www.diabetes.org/food-and-fitness/food/planning-meals/gluten-free-diets/what-foods-have-gluten.html).

Hope that helps :) And yes, most folks can't tell the difference between GF and foods with gluten. Seriously is not that hard to be GF, you will just eating more "clean" and not all the processed foods.

annekat

10-10-2013, 02:18 PM

Well if you can't tell the diff between Betty Crocker GF chocolate chip cookies and those with gluten, that sounds like a winner! Trouble is, I'd eat them all and OD on the chocolate.

Barbara N

10-10-2013, 04:11 PM

Barbara, there is a forum member named Jacquie who has a section on her blog about going gluten free, complete with recipes and favorite products. Her username is Booknut, but it turned out she did not have Wegener's, so hasn't been on here much lately, but may surprise us with a visit and update as she has in the past. Here is the link to her home page, and you will see the link to her gluten-free pages in the list on the left: Wandering Booknut - Wandering Booknut - Libraries and Technology (http://wanderingbooknut.weebly.com/index.html)

I'm sure there is lots of gluten-free info on the web, and you might check out the book that aewaustin and I mentioned above, by Dr. Susan Blum MD, which does go into the gluten issue. Also the book Wheat Belly, which aewaustin mentioned, and I have not seen a copy of, but have heard a great deal about. You could look these books up on amazon or other searches and get the drift of their content. Also the Mark's Daily Apple link above, which I have just scratched the surface of looking at, but I'm sure has a lot of GF info. I am not very knowledgeable about any of this, and don't practice it as yet, but just recommending what I have heard about in recent months.

for some reason the doctor said I wasn't to eat much fruit like apples, pears bananas and I am a vegetarian so it really lowers my intake plus she says limited dairy like cheeses and milk, ice cream. I can't chew so it leaves me very few options. I have an old book from the '60's with a section on gluten free so I will look it up. the trouble with dialysis is that it put you in a holding pattern for some with to come farther down the road but <i don¡t have anything down the road. they told me years ago I was not a candidate for a transplant because of the WG and -rhodoyorula, so what would I bve in a holding pattern for? I' checking into the RTX program today to see if I qualify. that might solve everything temporarily

mishb

10-10-2013, 11:40 PM

I was just in the grocery store the other day..I eat whole grain pasta but I did see gf pasta,spagetti and I have noticed alot more items in the store that are gf than used to be. I can honestly say I the only thing I have ever tried was Betty Crocker chocolate chip cookies and you couldn't tell the difference and it seems like it would be tough to just eat gf.Are fruits and veggies all gf ? What about turkey burgers instead of beef ? I will have to look more into this to see what the substitutes are. Thanks for the info.

Our grocery stores also have a lot of GF products.
I am currently looking in to GF cooking and I need to learn to make a few things before Xmas time. (some relatives coming over that are Gluten intolerant).

aewaustin, congratulations on your staying power :thumbup:

Is it really possible to have a blood test to see what types of foods you have an intolerance too?
So many foods now (since WG), cause my joints to become red hot and inflammed......I should ask about a blood test

aewaustin

10-11-2013, 01:57 AM

Michelle - Thanks :) The blood tests are not accurate for food intolerance, the best way is to do a food elimination diet. And just monitor what you eat, if something makes your joints red hot then quit eating it and see how you feel. I am going to a natural person, not sure what to even call her, but she is going to do some food testing where you put the food in your hand and do muscle testing. I have done this before and it is really cool to see how your body reacts. Bottom line is that for this stuff you have to find a person who does things differently than western medicine. Good luck!

Alysia

10-11-2013, 05:34 AM

Hi, It sound very convincing. since I have already problems with my colon and I already restricted my nutrition very much, I don't have to change a lot, mainly just the bread. I think I have to try this. thank you so much for all the info and explanations :thumbup:

hgustafs

10-12-2013, 01:44 PM

I was just reading this and i have been trying to go gluten free for 3 weeks now and it´s really hard, there is gluten in so many foodstuffs that its easy to overlook.
But i allready feel a slight improvement in my gut/tummy area, especially in the evenings which helps me sleep so i´m going to try and stick it out.
Thanks for the post

aewaustin

10-12-2013, 11:44 PM

hgustafs - Congrats! Just stick with it, but I know, it can get frustrating because gluten is in so many things. It does become easier.

aewaustin

10-12-2013, 11:47 PM

One other thing I thought of... Try to focus on what you can eat instead of what you can't, just is more pleasant that way :) When eating it out it is great if they have a GF menu, and more places are getting these. The best I have found at a national chain is Outback, they have one that is like a normal menu but just GF. The worst place I have found is Cheddars, their management just does not get it, in one place I read that they said "they are not giving out GF info until they have to in 2014". Needless to say I won't be going back to Cheddars anytime soon.

Rose

10-14-2013, 04:20 AM

Hi Aewaustin

Just the other day I consulted a holistic doctor. He wants me on a Gluten Free, Dairy free diet and also no eggs, peanut or shell fish. He has put me on lots of supplements 'to get my garden in order' as he put it. I have had problems with my bowels over the years but recurrent UTI"s and now diagnosed with mulltidrug resistant UTI has had me running for alternative help. We had a great chat and he made a lot of sense. the only thing I am worried about is that he wants me to take 2 caps of organic live probiotics...60 billion each cap. I do take a probiotic (about 5 billion each cap) as I am sure I am low with all my digestive problems but that seems too much. There are many articles on the net about probiotics being dangerous for the immune-compromised especially when there is a possibility of them getting out of their usual environment and passing through the gut blood barrier because of inflammation or a bleed. I am sure you were prescribed some on your treatment plan?
If so, what was your dosage? Sometimes I wish I was not so informed compared to the general population so I dont question everything but we Wegs have to be. Just seems too much to me though I do think I should increase my dosage but not by over 20 times.

aewaustin

10-19-2013, 04:08 AM

Rose -Interesting. I am trying to get in as many good probiotics as I can just to get my gut built back up because of chemo/antibiotics. I am not sure what is too much, but I tam taking a lot and drinking Kombucha on top of that. I know that on B vitamins I thought I was taking quite a bit but then discovered that it was just not enough. The concern I would have over that doctor is that he is asking you to do a whole lot at once, and I am not sure that there are that many folks who could go cold turkey on that kind of diet. My Rhummy said one thing at a time, go gradually to get adjusted. Anyway, that is my 2 cents ;)

Rose

10-19-2013, 07:09 AM

Actually it hasn't been too much of a problem as peanut, eggs, shellfish I hardly touch anyway. Dairy...I do enjoy cheese but can do without. Biggest problem is bread and milk for my tea. Actually not doing too bad there either, have allowed myself to cheat a little having toast and tea at breakfast but only then. I will though slowly wean myself off. Must ask him about B vitamins. I dont take any and what is Kombucha....dont worry, I'll google it. But I must say the nutritional supplement he prescribed had an almost immediate 'good' effect on me. At first I thought I was just having a good day but then I looked at the reviews on amazon and most people are raving about it. It is called InflamX by Metagenics. He also pescribed their probiotics which also have good reviews. Starting with a smaller dose (15billion live bacteria) before I go on to the stronger stuff

aewaustin

10-19-2013, 08:36 AM

Rose - You are much stronger than me :) I will say for the gluten that the holistic doc I saw said that it stays with you for 6 weeks, so that to get benefit you really need to be 100% GF for 6 weeks. I never had an issue with gluten until I went without for 6 weeks and then when I had it there was a strong reaction. So I highly recommend getting gluten free bread for your fix, gluten really irritates your gut every time you have it. Check out some of the books on it if you need convincing :)

For B vitamins I get my B-12 tested at my Rhummy and it has been interesting to see. And thanks for the heads up on the supplement, I will check it out.

I am going to a new holistic doc tomorrow and curious to see the outcome...

annekat

10-19-2013, 09:02 AM

I have recently become aware of another source of probiotics and that is naturally fermented vegetables. That is, not using vinegar to ferment things, but inducing the process to happen through encouraging live bacteria to grow in the veggies, and examples are sauerkraut and pickles done this way, not just pickled cucumbers but also peppers and other veggies. I think salt is involved in some way, too. There is a booth at the farmers market where I sell pottery, which sells these products and also teaches people how to make them. I have tasted them and they are delicious. Beyond that, I have not yet become a real consumer of these products and don't know a lot about the process. However, I will try to look into it a bit and perhaps share a link or two. I imagine these processes have been around for a long time, but how it works is new to me.

I was also reading somewhere that sourdough bread is better for you than other bread, and I'm assuming they mean bread with gluten, because there is a fermentation process which also produces live bacteria. But that leads me to the question, wouldn't these bacteria be killed when the dough is baked, rendering them useless to helping our guts? I can do more research but it takes more time than I have. Interesting subject, though.

aewaustin

10-21-2013, 12:27 PM

aewaustin

10-21-2013, 12:33 PM

I mentioned that I would post after I saw the holistic doc so just wanted to do a quick post. It ware really interesting, mostly from the muscle testing she did on foods and on supplements. I was actually taking quite a few supplements that just weakened me, so that is interesting. She gave me a few supplements to take, one is Zypan (can get on Amazon) and this was also suggested to me by the last holistic guy I went to. It is supposed to help you digest food better. She also told me that I should be gluten free (knew that :) ) and dairy free, she also stressed the need to not have sugar in my diet. Dairy and sugar will be harder than gluten for sure for me. She also said that corn is really bad and that should be avoided as well. Anyway that is it in a nutshell, but feel that it was really helpful and hoping it can help.

annekat

10-21-2013, 02:17 PM

Annekat - Yes I also found that source of probiotics and it is a good one, Thanks for mentioning!

Regarding the sourdough, unfortunately if bread is not gluten free, specifically, then it is not gluten free. Sourdough is no different than normal bread, wish it was though... Yes, I know that sourdough bread isn't gluten free, I was questioning the probiotic aspect of it, perhaps for those who haven't gone GF but would still like to help their gut. Since we were talking about probiotics. However, it still seems to me that baking the dough would kill the good bacteria, so I was wondering why the site I was on would make that claim in the first place. i just wondered if I was missing something.

annekat

10-21-2013, 02:33 PM

Funny you should mention sugar, since I have been thinking about it a lot the last couple of days. Generally I can eat moderate amounts of it without a lot of trouble, but the last couple days, I have been in a location where chocolate, cookies, etc. are readily available and have eaten too much of those things and it has really messed me up! Not just the usual sugar high followed by a crash, but it increases my Wegs symptoms such as coughing and breathing difficulties. I remember this happening when I was first sick with Wegs but didn't have a clue that I had it, just thought I was dealing with lots of sinus and allergy issues and recovering from a severe ear infection. After a year or so of treatment for Wegs, when I felt a lot better, this sugar problem became less intense.... not that I was eating a lot of it, but I could occasionally indulge without it being a big deal. Now that I'm trying to taper pred from 10mg. on down ultimately to 5mg., the intensity of this problem has resurfaced! Especially when I'm out in colder weather and under the stress of my business this time of year, which involves selling in an open air market two days a week and making a product the other 5 days. It should not be that hard to resist the worst of the sugary stuff. But with Halloween and Christmas coming up, there will certainly be a lot of it around! If I can only remind myself how bad it makes me feel... Personally, I think it is easier for me to avoid sugar than dairy or gluten... not making a judgement on it, just observing. I have not actually gone gluten or dairy free, and agree that it would be a good thing to strive for, but I will say that neither of those things make me feel as bad as sugar does if I eat too much of it. And I'm wondering if it makes any sense that it would become even more of a problem when at this stage of tapering pred, as seems to be the case.

aewaustin

10-25-2013, 07:04 AM

Just found this article and wanted to share Modifying Paleo for Autoimmune Conditions (i.e., The Autoimmune Protocol) » The Paleo Mom (http://www.thepaleomom.com/2012/05/modifying-paleo-for-autoimmune.html).

"Autoimmune conditions and a leaky gut (http://www.thepaleomom.com/2012/03/what-is-leaky-gut-and-how-can-it-cause.html) go hand in hand. In fact, in every autoimmune condition that has been tested, a leaky gut is present and is a contributing factor to the illness (not all autoimmune conditions have been tested, but many in the paleo community assume that leaky gut is a factor in all autoimmune conditions). For individuals with suspected or diagnosed autoimmune disease, additional dietary guidelines exist to help address the disease"

aewaustin

10-25-2013, 07:31 AM

Anne - Interesting. The holistic doctor was really against sugar, to the point that I started taking everything she said with a grain of salt, but I do know it is bad.

And at least you can tell when your weg symptoms are acting up, that is great when you can tell. For what it is worth, I did not have an issue with gluten before I stopped it, there were no issues when I had it. But after I got it out of my system, which takes 6 weeks, then I definitely noticed a difference. Unless you go 100% GF I don't think most folks can tell how it is affecting them. Part of that is because when the gluten is in the system the villi in the gut are not fully absorbing stuff, but once you remove the gluten then they start absorbing more and then when they get gluten it causes more of an effect. Really hard to describe but I hope that helps some.

annekat

10-25-2013, 08:09 AM

Thanks, AEW. I probably shouldn't even talk about gluten until I decide to go off it for 6 weeks and more. But the info you share and that I see other places is interesting. I could see going off wheat if I could replace it with other satisfying and easy to prepare foods. But the Paleo diet seems to rule out rice and any grains, even those without gluten. That would be hard. I did find out that buckwheat flour doesn't contain gluten, btw, so buckwheat noodles can be used in place of pasta, along with rice noodles, as I think you mentioned. So I'm sure if I embarked on one of these plans, I would do the GF angle of it before ever trying the Paleo angle with no grains. I do like to eat animal protein, so that part wouldn't be hard. And eating more veggies isn't much of a problem. Dairy is another issue; I really don't drink milk anymore but do eat a lot of yogurt and use half and half in my coffee. I also use butter, but other than that, just extra virgin olive oil. It gets overwhelming hearing about different diets and people swearing by them.... for example, I know people who are vegans, and could never eat animal protein, so have to use soy, and I'm not sure what else, for protein. It seems like if you consider all of the more reputable diet systems out there, you will not be able to eat anything at all! Except veggies and fruits, I guess.

I have met one person who has gone GF and sings its praises, but I think she also thinks she has celiac disease. Most notably, all her allergy symptoms disappeared, and that would be a big one for a lot of people whether they had an AI disease or not. Seems to me that allergies are like a form of AI disease, or related to it, though they are not usually labelled that way....

Anyway, back to the sugar, thanks for your comments on that. How it makes me feel does seem to be a reliable indicator of disease activity for me. Since that incident last weekend, I've eaten a little of it with no real problem, but really do not have sweet stuff around right now or put in it my tea or anything, except for that which is in flavored yogurt or fruit that a friend has canned. We will see how I handle Halloween, Thanksgiving, and Christmas! If I am just careful, I think I will be OK.

Rose

10-25-2013, 07:59 PM

I started my gluten, soya, dairy, shellfish. peanut, sugar free diet about two weeks ago. I often find myself standing in the kitchen looking around and wondering what I can eat. I actually was beginning to feel quite weak and then I started back on dairy. Sugar was not a problem, I never really have had a sweet tooth (wouldn't think that if you saw me...thanks to pred) and most of my sugar intake in the past was in tea of which I drank about 8 cups a day. I cut out that sugar about 2 years ago and have been drinking tea with milk only. Recently have cut down on the tea also, in fact during this diet down to one cup a day. I am still GF and I guess soya free. Shellfish I never eat and peanut rarely. I have started eating cheese again and I am feeling better for it. Not too happy with my holistic doctor, without gong into too much detail, but after two consults and a few phone conversations I have found him to be a bit 'scatty'. Doubt if I will be going back but I will continue with everything for now and see how it goes.

I have seen l lot on the net about food allergies and leaky gut and I have often wondered about the connection with allergies and AI diseases. Whenever my 28 year old son consumes dairy he complains, within of about an hour, of sinus congestion and heavy puffy eyes. This has been going on since he was very young. We have had him tested for allergy twice and it has come back negative. A milk allergy can be very severe and life threatening and could cause anaphylactic shock. His is not life threatening but obviously dairy produces an allergic reaction in him and the immune system has been activated as it would in hay fever sufferers. It is not an intolerance as this is when the food eaten gives GI symptoms as in lactose intolerance. My research on the net informs me many people suffer the same symptoms after eating dairy. It is a problem for him as he just loves cheese, pizzas etc but tries to avoid dairy products as much as possible.

aewaustin

09-16-2014, 07:36 AM

Rose - I am learning more and more about being "intolerant" of foods. I have no allergies per say, but now that I am GF if I eat gluten I get very sick, faint and lightheaded which can last days. For dairy though I just get stomach pains that are horrible. To test I think I am finally going to pony up the money to do the Alcat testing for foods.

And yep, I finally found a holistic that is awesome, but went to two duds before her.

Many people think that everyone with autoimmune has leaky gut. It seems to make sense.

Annekat - I hear you on Paleo, basically I just avoid wheat, corn, milk and cheese. The other grains and dairy I try to eat very infrequently. Those seem to be the worst foods and then after that I just go by what makes sense. I am getting tested for intolerances and am going to use that to help tweak further.