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

**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 , 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 . 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

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.