What I wish I had known two years ago... (Paleo & Gluten Free topic)

[aewaustin]

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 , 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]

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]

This is very interesting. Thank you very much.

[Wegetarian]

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]

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]

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 . 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]

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.

[Barbara N]

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]

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

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.

[Barbara N]

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

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