CancerCompass message board discussion started by momkaren on 3/23/2008 http://www.cancercompass.com/message-board/message/all,22279,0.htm Fri, 05 Sep 2008 00:00:00 GMT Fri, 05 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi all,I think this site might be a bit confusing for new users, at least it was for me.  I noticed this recent post under an older category Celeac, Ibs, MGUS and MM and I thought I would bring it to a new category so Rich's post could be answered.  Thanks all! I guess when you post on an old category it does not show up on the recent posts.Karenrichedie wrote:HI, I was diagnosed with MGUS and I am 38. I have tingling in my feet and hands at times but it goes away with sleep or rest. Although sometimes sitting for a while will cause numbness and tingling in my legs or feet when I stand up. I have problems with inflammation in my right eye, some mild mid back pain, sore feet that limit my walking distance, some trouble swallowing at times, weird cold pains in my head at times, etc. Can this all be linked to MGUS? I am also getting tested for Lyme and other things. I am scared. I eat really well but I do eat gluten. I have been a semi vegetarian for years and eat mostly organic foods and exercise often as I have for years. They say they tested for Celiac but I don't know how reliable.Rich Is there research linking Celiac to MGUS????  richedie  momkaren Sun, 23 Mar 2008 00:00:00 GMT Thanks karen, very kind of you. I am very confused and feel my life has taken a wicked turn. I can't do half the things I used to, I can't hike, bike, take long walks, ski, working out is becoming difficult, even playing guitar hurts. I am becoming a coach potatoe. I am a miserable person these days and I know my family sees this. When this all started, I had odd symptoms like a viral or serious bacterial infection - temp drop, pain and numbness in feet, weakness, shakes, tremors, twitching muscles, swallowing issues, nausea, weight loss, etc. I thought I had MS, Lyme or who knows what. I find it odd all these symptoms came a week or so after Ulnar entrapment surgery. Anyway, current symptoms are pain in feet, weakness at times, especially in arms, pain in wrists, hand and forearm like carpal tunnel. Could I have some rare nerve entrapment syndrome. Weird. POEMS? Endocrine problems? Rare infection? Weird. For a while I thought maybe it was my one amalgam filling, root canal, food intolerance, Celiac, the mind goes crazy with possibilities. Then they found the MGUS. I read 4 of 5 people have no symtoms. Could my symptoms not be MGUS related and just a coincidence? Odd. The diet thing is even more confusing. Dr. McDougall who I really respect says to avoid all animal protein as it increases the autoimmune response and can increase symtoms and push toward cancer!  Then I read about the gluten connection! I tested negative twice for Celiac so could I still be gluten intollerant? Should we still avoid gluten or limit it???? Thanks!!!!!!!!!!!!!! Rich   richedie Tue, 01 Apr 2008 00:00:00 GMT Richedie,You might want to read through the lengthy messages under the heading:Celiac Disease And Myeloma Connection?http://www.cancercompass.com/message-board/message/all,17150 I'm not sure if anyone knows for sure the answer to your question, but I believe there are many of us living with MM and MGUS who also have intestinal issues and think in our "guts" that their is a link. My oncology doctor did acknowledge that some others with MM/MGUS that he has worked with have also had intestinal issues.  I was tested for celiac and it came back negative.  But, since I don't ear hardly any grains and therefore little to no glutan, I don't trust the test results.  I think you have to be eating glutan for the test to be accurate.All I personally know is that when I eat wheat and other grains, I have many burning/itchy skin issues as well as intestinal issues.  So I have learned to stay away, for the most part, from grains.  Hey, I can't promise I know what your answer is but may I suggest that you look into eating no grains (including corn) and also cutting dairy for, I don't know, give it a month.  Also, you could research trying some antifungal supplements such as caprylic acid, undecylenic acid, grapefruit seed extract, oregano oil.........You should research it, but maybe give it a try and with a strict diet, see if some of the pain and swelling subsides.  You mentioned food intollerances.  Listen to what your body is telling you.  After you try the anti-fungals for a few weeks, make sure to follow-up with lots of non-dairy probiotics.  This approach has helped me.  I'm only one person and not a doctor.  But, it might be a start.  Try the strict diet for a week and see if it helps, even if you don't use the supplements.  Just try:Fresh, raw nutsLots and lots of veggies (no store bought salad dressings)Some fruitsBeansMaybe eggs (they don't work for me)I'd suggest fish and maybe free range chicken but you mentioned that you don't eat much meat.  I don't eat too much either, but I eat premium wild caught tuna and salmon in a can, without additives like soy. I use the meats to supplement my mostly bean protein.It may not work for you, but it has helped with my cronic infections I had for 3 years, skin issues, and fatigue.  In all honestly the fatigue has mostly been helped by my B12 shots/every 3 weeks.  Good luck to you.  My abnormal plasma cells dropped from an average of 28% to 10% on my last bone marrow biopsy.  The changes I had made in the 6 months between the bone marrow b. was B12 shots, beta glucan supplement, lowering stress, and dropping practically all grains from my diet. Sorry I rambled.  I hope you figure all this out.Karen momkaren Fri, 04 Apr 2008 00:00:00 GMT Wow, following that protocol...your numbers dropped that much!? Good job.I am pretty much a vegan though so I need grains for calories, LOL. I mostly eat oats, buckwheat, and brown rice and try to avoid gluten. Maybe I should find gluten free oats. (I AM SO SICK OF WATCHING PEOPLE AROUND ME AT WORK EAT WHATEVER THEY DESIRE AND CLAIM NO HEATH PRBLEMS! I FEEL LIKE I AM DYING AND EAT VERY HEALTHY. IT ISN'T FAIR. I HATE IT) I eat lots of fruit, good amount of raw and cooked veggies, I do use Maple Grove Farms fig dresing because it has no oil. I avoid all oils because I read to much about the link between ALL oils and cancer. I was told to AVOID ALL animal protein because of the saturated fat (which is impossible to avoid) and also the fact that undigested animal protein can get into the blood and cause a major aut-immune response. So, you eat meat?????? Interesting.  Right now I do no dairy, eggs, meat, and soy. I may continue with grains but no gluten.Why did you mnetion the anti fungal products? For consumption? I was told there are various immune enhancing herbs, plaus some supplements that claim big things.     richedie Fri, 04 Apr 2008 00:00:00 GMT Rich,The way I got to this diagnosis of MGUS was through 3 years of chronic yeast infections.  Mind you I've never eaten a typical American Diet, as it sounds like you do not either. I did however eat a high carb. diet for the same reason you do, because I ate no meat for seveal years, then added some fish and then when my first daughter was born I found out she has a serious dairy allergy so I added free range chicken to our diets when she was about 1 years old, thinking that we needed this protein.  When I stopped eating dairy, because she couldn't have it, my gut started to get a little better!  Well, then a few years later I had 4 months of infections. So, I read and visited a Naturapath doctor and started on anti-fungals and changed my diet somewhat. No dairy, or wheat, processed sugars, but I stayed with eggs, soy and oats, veggies, etc.  Of course no processed foods, etc. Well, I got better, then pregnant again so stopped the supplements and started eating like I had used to with grains, etc.  I never added that much dairy again, because my gut felt so much better without it.Then 2 years after the birth of my second daughter the infections returned with a vengence and skin issues began.  I changed my diet even more, dropping soy this time as well as wheat, but continued eating odd grains, like Kamut (has gluten) and millet and grains like foods: buckwheat, quiniou, amaranth. Anyway, this time I became aware of a low white blood cell count and high IgG count.  I also had extream, extream fatigue.  I thought it was from having young kids, until one day I was on 2 week vacation, getting more than enough sleep and still had exteam fatigue.  Not like normal tiredness.  If you have felt it, you understand.  I tell people it was not just like being tired.  I went to so many doctors to ask about fatigue and chronic yeast infections.  No help.  I went back to work full time when my second daughter was 3.  It about killed me.  Mind you, in addition to working, I was making lunches for my oldest daughter with a dairy allergy and me with my odd diet (lots of chopping of veggies!!!!!!!)  We almost never eat out and meals are lots of chopping and cooking from scratch.  Like you, I refuse to eat and feed my family all the junk that this culture tells us is healthy.  But, where did it get me?  MGUS!!! So now I ask myself, was it my high carb diet?  Was it too low in B12 and iron intake???? Now my B12 count and Iron counts are very low, thus the B12 shots and iron infusions.   So, was my semi-veg "heatlhy" diet all that good for me?  I don't know; these are the questions I ask.  I recently tried "grass" fed free range beef, once so far. I keep meaning to pull the other expensive meat out of my freezer.  I find it hard to cook. Recently I've noticed skin reactions after eating my free range: chicken and eggs. So, I wonder is this because even the free range chickens are fed lots of grain, like corn which is infiltrated with fungus/micotoxins. So is the other grain like wheat, because it is stored in silos. Maybe people with healthy immune systems can take all those mycotoxins and fungus. I don't know what the answer is, but after years and years now of reading about fungus in our guts I have come to several personal conclusions. Mind you, I have no medical credetials and my sources are from alternative approaches, not western mainstream medicine:I have read many times that it is thought that many disease states start in our guts and then lead to other problems. So getting your gut healthy is a beginning. Whether that means just adding good bacteria (probiotics such acidopholus,etc) or stopping eating of grains....taking anti-fungals to deal with bad bacteria/fugus overload?  I don't know.So, I surmise, could my gut have gotten so out of balance due to a high high carb diet with lots of soy and dairy in my early adulthood?  Meaning the good bacteria was overwhelmed by the overload of fungus. I did not test positvie for celiac, but I know what my body does if I eat wheat and oats.  Constipation, bloating, skin issues, etc.  So, for the most part, I've decided to stop eating them on a regular basis.  It's difficult, if we go out to eat to Thai or Indian, I want to eat the breads, etc. You asked why I suggested that you research anti-fungals.  It is because I have read so much which says if you get your gut healthy then it can effect other health issues positively.  I guess I have personally come to consider that fungus in my gut is what got me sick: really low white blood cell count, somewhat low red blood cell count and high IgG.  Did my IgG levels get high because of my body thinking the foods I was eating were allergens?  I don't know?  Did my chronic infections start because my white blood cell count was so low?  Who knows.  I'm sorry I rambled again.  I honestly, feel I am so lucky to be as healthy as I am at this point, but can I say I'm normal? No, not with having to eat this time intensive diet (and having infections and skin and GI issues, if I don't) and feeling overally tired without B12 shots.  I'm just so thankful one doctor finally thought, "Hey, you shouldn't have such a low white blood cell count for years and years. Maybe there is something behind this."I understand your feelings of it just not being fair when you look at others. You never ate a typical diet and it sounds like you have always been so physically active.  I empathize with you. I agree with your frustation!  That's why I suggested you look into healing your gut.  These health issues sound like they are new for you, maybe you can try to clear them up before they get really locked into your body. Like I said , I'm not a doctor.Oh, also I suggest you try to eat good oils! Don't cut out oils all together.  You're body really need Omega 3 Fatty Acids (Salmon, Flax).  Read about it.  It is really important for your health.  I can't speak to the animal protein information you shared.  I just stayed away from meats for years and years because of my beliefs and fear of heart problems.  Best of luck to you,Karen momkaren Fri, 04 Apr 2008 00:00:00 GMT Hi Rich!I absolutely agree with Karen in general, I'd just like to add some tips.  - Detoxification! Whatever treatment follows this is the first thing you should consider doing. Your diet sounds like very healthy one, but still - try to read clean-up your body for a few weeks. Read some more about it, but my tips are: besides taking Karen's advices, drink a lot of good water, herbal tea, completely eliminate the sugar intake in any form, eliminate all artificial cosmetics...and purify your mind and soul as well: away with stress, start meditating, mild nature walking, tai-chi... - Take a quality branch of (better cold-sea fish than flex) OMEGA-3 acid. It has a very,very important role in our diet. Among other things it prevents the angiogenesis in tumor cells...- Go on a blog Margaret's corner. It's a blog of MM patient (American) from Italy who does an excellent research (besides others) on non-toxic supplements to fight cancer, MM in particular. I learned A LOT from her in last few months.And start with all of this TODAY!  Karen! Congratulations on your result! But I wander - if you had 28% involvement in your bone marrow - what did they diagnose you at first? As I know: for  more than 10% official medicine consider as SMM (smoldering myeloma) and with some other symptoms (like bone lesions, Bence-Jones protein...) is MM (multiple myeloma).  May you stay stable forever! Best wishes to both and all of you! Robert, Slovenia (MGUS patient) robertos Thu, 10 Apr 2008 00:00:00 GMT Hey all!So what is the diet you all suspect I should try? I know I felt good in November when I started an elimination doet of cooked brown rice, sweet potatoes, and lots of cooked veggies and some cooked fruits. this was following the McDougall diet and Elimination diet. I followed vegan because that is the diet that continues to show as being the most healthy through history, the healthiest societies were vegan. that is why I switched. I also don't believe we need oils, like canola and olive but omega 3s are important from green leafy plants and flax. You say cut ALL grains, does that include Flax???What about beans? I do take Carlson's Cod Liver Oil. If I start switching to more organic meats and fish, eggs, I am afraid I'll be constipated. I rely on grains for tons of fiber. What about fruit?Did you follow any books/specific diets to get better?I actually saw a Lyme specialist who put me on Floconazole - Duflicon? It is an anti-microbial drug, then I am going to be on anti-biotics.I even bought an anti-candida diet book.You all say probiotics but your body should get plenty of prebiotics from fruit and veggies.Confused....  richedie Mon, 12 May 2008 00:00:00 GMT