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Wegener's Granulomatosis

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  • Wegener's Granulomatosis

    Hello MDA,

    I have a friend who has Wegener's. She was actually my daughter's kindergarten teacher last year, and I've grown quite fond of her. She has a special place in my heart, and I want to try and help her any way I can. The more I read on the primal/paleo/ancestral health boards about diet actually being able to cure people of some things (diabetes, MS, autoimmune diseases, etc.), the more I think I need to be confronting her about her diet. She was pretty thin before battling this disease, but has put on weight since having to do all the steroids. I will say that I do not know her diet, other than when she talks about getting treats for herself after a diet of clear liquids, usually after a long stretch in the hospital.

    Anyway, before I go to her with suggestions, I wanted to know if the board has any information regarding specifically to Wegener's. I'm to the point of wanting to pay for an hour consultation with Jack Kruse, but I can't really swing that right now, and don't want to do it if Wegener's is something that just can't be helped.

    I'd appreciate any and all links, studies, personal anecdotes. I'd love to be able to go to her in the next week or two and really lay out the case why she should consider using diet as a tool to help her beat this.

    Thanks, MDA.

    Liberalism: ideas so good they have to be mandatory.

  • #2
    It is everyone's impulse to want to help others and that is commendable. After years and years of doing this, I finally realized that people usually have to discover these things for themselves. So now all I do is talk about it if the topic comes up and how it works for me and I find it interesting. I try not to approach it as recommendations for other people, that can backfire. I read a quote that stuck, forgot whom it was by.... "Preach not to others what they should eat, but eat as becomes you, and be silent"
    just my 2cents


    • #3
      My friend truly wants to beat this, and is open to any and all advice. She spends hours upon hours on support forums sand will listen. Just trying to see if there are any anecdotes I can take to her to help my case.
      Liberalism: ideas so good they have to be mandatory.


      • #4
        *looks up the disease* Ew. All I can suggest is, since it's auto-immune, to cut out anything in the diet that could be contributing. Grains, legumes, dairy... but you're on MDA so I'm sure you know all this.
        Out of context quote for the day:

        Clearly Gorbag is so awesome he should be cloned, reproducing in the normal manner would only dilute his awesomeness. - Urban Forager


        • #5
          good news...she actually had heard of this about a week ago and did a little research on it. needless to say, she's interested.

          also, relentless roger and the caveman doctor (podcast) mentioned it in episode 3 of their podcasts. i mentioned that to her and she's going to try to get in touch with him (dr. champ, i think)
          Liberalism: ideas so good they have to be mandatory.


          • #6
            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 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.


            • #7
              Hello Junior Member,

              I read through you reply to Adam about dietary treatment for Wegener's. And it looks very promising that dietary changes could help keep this deadly disease inactive longer than suggested by medicines.

              I have a friend who has recently been detected with Wegeners. And like most Wegenes patients he is on have medication and steroids. He is in the phase where medicine is tappered down. I would be greatful if you could share your own experience with Wegeners and what dietary changes did you undertake. Did Wegener's stay inactive after remission in your case?

              Please help me. It is very heartbreaking for me to see my friend in this state and not being able to do anything. I want to help him recover once he is in remission phase. Please help.


              • #8
                I was on medication for several years for the Wegener's but I have been in remission for a long time now and am medicine free. As I said in my original post, I cannot definitely state that my diet helped my Wegener's. I originally went on the diet because of severe fibromyalgia that went away after about a week of being on the diet. That is what led me to believe that food was causing many of my medical problems.

                I received my results from the allergy testing and found that I was sensitive to just about everything. Going on the allergy-free diet took care of most of the medical problems I was having. I remain on the allergy-free diet and am in relatively good health consistent with my age and problems not related to diet. A place to start is to get an allergy test that could identify problem foods. The only way to see if an allergy-free diet would help is to try it for awhile. Just remember, changes will not happen over night. It would take awhile of using the diet to see if it works.