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    Gluten-free, anyone?

    Up until about three weeks ago my symptoms were acting up so that it was hard to concentrate on my job. (I know, I'm VERY thankful that I can still hold a job!) Then my wonderfully supportive wife told me about some online research that she had done regarding a gluten-free diet.

    I decided to give it a shot. After all, there wasn't much to lose by just trying it out for a few weeks. In other words, yes, I was pretty skeptical.

    The first week I couldn't detect much change, if any. But the second week I began feeling better, and now, going into the fourth week I feel like my symptoms are about as muted as I've ever felt them, and my energy level is almost up to my pre-MS days!

    I'm really hoping that it's the gluten-free diet and not just a coincidence that I'm feeling so much better. I've had MS for only just over a year, so I don't have much to compare to. I still have just about all of my most consistent symptoms, but they're all at a very low level now, low enough that they hardly even affect my productivity at all!

    So my question to all of you out there in MSWorld Land - have any of you tried a gluten-free diet? If so, what was the result, if any? I'm planning on continuing the gluten-free diet as long as it seems to be benefitting me, but I was just wondering if anyone else on this forum has any experience going gluten-free. Thanks!
    "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

    RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
    Currently following Dr. Jelinek's OMS (Overcoming MS) plan

    #2
    Yes. I followed it for a few years because my daughter needed to be on it. She "outgrew problem" (probably not because she has other problems that GF diet would most likely help but that's a different story)

    After I went back on wheat I was diagnosed. Tried GF off & on. Always feel better but sometimes lack discipline. It really needs to be done 100 percent.

    Get motivated when I hear good stories though. Thanks for sharing

    Comment


      #3
      I am Gluten Free. The only MS Symptom it has helped with is pain. I have also noticed I do not have any more digestive issues since going GF and that was a serious bonus! It took about month for the pain to go away, so you have to stick with it and no cheating.

      I have always eaten very healthy so going GF was not an issue once I found a great pasta substitute...Quiona! There are actually a lot of GF Products out there no that makes the transition smoother.

      Only problem I had going GF was I started dropping weight...and for me, I do not need to lose weight. So I had to make sure I was getting enough calories.

      I did not go GF because of MS...I developed another condition with the bladder that can be managed with either dietary changes or drugs...I chose to change the diet...and it worked.

      No matter what diet you choose...if it works for you and makes you feel better...that is all that counts. Diets are not one size fits all...do what is right for you, and it sounds like going GF has been working out well for you.
      Katie
      "Yep, I have MS, and it does have Me!"
      "My MS is a Journey for One."
      Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

      Comment


        #4
        I never imagined I'd be gluten free/ but now I AM

        Have been gluten free for several years 100%. It has not been difficult for me. Lost complete sight several years ago, dr said b gluten free & several MONTHS your sight may return.

        May, MONTHS, those were words I didn't want to hear. Well, went 100% gluten free & 1 week later my sight started to return. Well, I went from totally black, to now can see again. I do wear glasses with bifocals, but I have no complaints

        I can't complain about my MS either, because from going from totally black, to seeing again, no description. I pray for anyone who has sight difficulty. Using a wheelchair is nothing compared to lack of sight.

        But getting back to the subject, gluten should be absent from everyone's diet. Now the more I read about gluten, I wonder why I didn't remove it from my diet previously.

        For real, there are tons of gluten free food, and lots of people who are very ignorant on gluten, my sister-in-law.
        But there I go again, that's another story.

        Comment


          #5
          yes to gf

          I went GF when diagnosed (blind, optic neuritis) in March 2011.

          Not sure if it is helping symptoms, as I would have to eat gluten to see what the diff is. I am not willing to do that.

          MS came and slapped me stupid in a profound immediate attention getting way with the ON. Gluten Free seems to be the one aspect I can control in the otherwise out of control situation. That and the postitive attitude are all I can have any say over, so for that alone I am willing to continue it. I do not find it difficult at all, as options are very available.


          good luck. keep us posted, and ask any questions you may have. There is also a nutrition forum here, with many gf questions already answered.

          karen
          You are in the driver's seat, but God is holding the map

          Comment


            #6
            Re gluten free

            If you have underlying celiac disease, then yes, gluten free is an absolute necessity. It can and does contribute to a range of problems, autoimmune disease being high on that list. However, it is strongly recommended that you be evaluated formally for celiac disease before going off gluten. Some of the complications can be dire, such as early onset Alzheimer's and intestinal lymphoma. So, you really need to be tested for sure. And you will get a false negative if you are already off gluten. Why does it matter? Well, your doctor will need to monitor you with screenings for intestinal lymphoma, for one thing. Some people are sensitive to gluten and feel better off it, but being exposed to gluten is not dangerous for them. And with that result, the placebo effect may be in play.
            CIS DX 2013

            Comment


              #7
              I started a sugar blocking diet last year and then after a friend convinced my wife that gluten could be her intestinal issues I was able to get to a grain/gluten free diet which is what I had really waned to try.

              Within two weeks her discomfort had cleared (she was tested non-celiac) and she can definitely feel when she gets something that has gluten in it.

              I personally feel great which makes it easy to stick with the diet.
              I have more energy, have more reliable/frequent bm, and am not hungry all the time like I used to be.

              We also eliminated as much processed foods as possible, both restaurant and stuff from the super market.

              Recently my wife has convinced herself that the tainted meat proteins are making their way through the blood brain barrier and causes MS, so we are going to try going vegan for a while to see if my health improves any more.

              Cannot say I don't disagree, the more I read about the industrial meat industry the less I believe that they have anyone's interest in mind besides their own wallets.
              1995-symptoms with no cause
              2000-diagnosed with Probable MS.
              2000/1-started Avonex
              2002-Rebif b/c increasing brain plaques
              Nov-13-Tecfidera b/c needle fatigue&sympt

              Comment


                #8
                Originally posted by ms382012 View Post
                ...However, it is strongly recommended that you be evaluated formally for celiac disease before going off gluten. Some of the complications can be dire, such as early onset Alzheimer's and intestinal lymphoma. So, you really need to be tested for sure.
                Do you mean that a person who is NOT a celiac and goes gluten-free is at risk of developing early onset Alzheimer's and intestinal lymphoma? Do you have any studies to back this up? It seems crazy that eliminating something that harms your body would lead to other diseases! Is there something in gluten that your body needs? If so, what is it, and can it be found in other foods?
                "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

                RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
                Currently following Dr. Jelinek's OMS (Overcoming MS) plan

                Comment


                  #9
                  Originally posted by ms382012 View Post
                  However, it is strongly recommended that you be evaluated formally for celiac disease before going off gluten. Some of the complications can be dire, such as early onset Alzheimer's and intestinal lymphoma. So, you really need to be tested for sure.
                  I was also wondering if you have studies to back this up. It sounds like you're saying that those of us who don't consume gluten (and don't have a dx of celiac) have a risk of getting Alzheimer's and intestinal lymphoma.

                  From what I've read, someone who has celiac disease and consumes gluten has a higher risk for developing lymphoma. Is this what you meant to say?

                  I've also read that going gluten free can reverse Alzheimer's, but I'm really not convinced about that.
                  1st sx '89 Dx '99 w/RRMS - SP since 2010
                  Administrator Message Boards/Moderator

                  Comment


                    #10
                    Gluten free before MS dx

                    Hello miwealia!

                    Great thread...thanks! I am glad that gluten free is going so well for you! Are living in China now? We went to China a couple years ago and being GF actually worked out quite well. It was easier in the southern provinces and of course in the cities....a fantastic surprise! Love China!

                    I went GF in 2007/08 as I was desperate to figure out what was wrong with me. Lots of symptoms but doctors kept telling me I was crazy. (not really, but it was implied.). I immediately noticed an improvement in fatigue and no bloated feeling in my stomach after meals. It was life changing! But in 2009, I went into a significant exacerbation leading to my MS diagnosis. (Thankgoodness I was no longer considered crazy! Whew!)

                    There is no way I would add gluten back into my diet and in fact our entire household is now GF.

                    My new concern is GMO for corn, soy and sugar (sugar beets, not cane) Fortunately, we shop at a local market that only has organic fruits and veggies and most of the package foods are non-GMO.

                    We cook a lot at home and make healthy meals...but we did indulge in a bit of junk (sweets) over the holidays...with kids it is too hard to be super strict...so we give here and there with sweets. But we often talk with our girls about healthy choices to keep good care of our bodies...and as they are now becoming teenagers, taking care of our BRAINS too!

                    MGM

                    Comment


                      #11
                      Originally posted by MyGirlsMom View Post
                      Hello miwealia!

                      Great thread...thanks! I am glad that gluten free is going so well for you! Are living in China now? We went to China a couple years ago and being GF actually worked out quite well. It was easier in the southern provinces and of course in the cities....a fantastic surprise! Love China!
                      Hi MGM,

                      Yes, my wife and I are still in China, and we love it! I teach a special English class for music major grad students and conduct the university choir, and my wife teaches English to undergrad English majors. We've been in China since 1993, spending the school year teaching in China and the summers in the U.S. visiting family. Our current city, Urumqi, way out west, is our ninth city that we've lived in during our 20 years here. Our kids (now adults and living in the U.S.) grew up here, so they think of China as their home. Definitely TCKs! (Third Culture Kids)

                      And yes, you're right, it's fairly easy to go GF in China. We eat almost entirely fresh and whole foods because that's what's available at the local market. And we have a machine that can turn soybeans into soy milk, rice into rice milk, almonds into almond milk, etc. But it does make life a bit more time-consuming to do everything yourself rather than just buy it at the store. And also since we don't use any prepared (boxed or canned) foods, it requires us to shop almost every day. But it's definitely worth it! And really, there's no other alternative, since the special GF products that you can find in US supermarkets just aren't available way out here. Beijing, maybe, but not out here!

                      I'm just hoping that it's the GF diet that has caused the improvement that I'm currently experiencing rather than just a coincidence, and I'll eventually go back to how I was feeling almost a month ago - elevated levels of my symptoms causing extreme headaches, paresthesia-related pain, fatigue, dizziness, and a few other all-too-familiar symptoms that are currently almost not noticeable.
                      "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

                      RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
                      Currently following Dr. Jelinek's OMS (Overcoming MS) plan

                      Comment


                        #12
                        Am GF and dairy free (do eat eggs) and the dairy connection with MS has more studies to back it up- it´s the protein in the milk that is the culprit. So, When first dx´d I gave up gluten, several weeks went by and no change in the tingling. Then I gave up dairy and in 4 days the numbing improved dramatically.

                        I have kept with those two dietary changes and recently added turmeric and bone broth- homemade chicken or turkey broth made in a crockpot that stays on all week. The bone broth is supposed to heal the intestinal lining and close the cellular gaps. If you are willing to change your diet, read Dr. Terry Whals´info and the site of Dr. George Jelinek.

                        Be aware that many GF products are not good for you as they are almost all simple white flours- rice, tapioca, or potato and treated almost as if sugar in your body. Decreasing your sugar will decrease inflammation throughout your body.

                        Comment


                          #13
                          Thanks, Temagami! Besides being GF (almost a month now) I've been red meat and dairy free since about November, when I went vegan for two months just to see what it would do. Never did intend to continue the vegan diet. The only effect it had on me was to melt off about 35 lbs. in a couple months. I stabilized at about 139 lbs., which is where I still am today. (I'm 5'9", average build)

                          My first presentation of MS was optic neuritis back in October '12, and an American doctor friend that lives near me (I live in China, way out in the boondocks) was pretty sure it was caused by diabetes because my blood work showed I was just over the limit and put me into the diabetic range. So I cut WAY back on sugar at that time, and haven't added hardly any to my diet since then. A few months later we learned it wasn't diabetes at all, but rather the first presentation of MS. I still periodically check my blood sugar level, and it's never been very high, nowhere near even close to the limit.

                          I eat fish and skinless chicken breasts, and that's it as far as meat is concerned. I bought Jelinek's book, and other than the chicken breasts, I'm following his diet pretty closely.

                          Throughout all of the dietary changes that I've made over the past year, the biggest improvement that I've experienced was two weeks after I went GF. It was a noticeable improvement in the level of my symptoms. It really dropped! But as I said in an earlier post, I don't know for sure if it was a coincidence or going GF that caused the change for the better. Being the optimist that I am, I'm gonna go with GF.

                          And regarding all the specialty GF products available in the stores - I don't have to worry about that; I haven't seen any of these products in the stores here in Urumqi, China. But there's lots of fresh fruits and veggies, lots of nuts, and lots of whole grains. Of course, there are LOTS of choices of junk food (where in the world can you NOT find a Coke?!), but those are now just a distant memory for my taste buds. As my friends take a swig from their Coke and take a bite from their Snickers, I take a swig from my Camelbak water bottle and take a handful of cashews, pistachios, almonds, walnuts & raisins from my ziplock.
                          "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

                          RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
                          Currently following Dr. Jelinek's OMS (Overcoming MS) plan

                          Comment


                            #14
                            Wow, all these stories are incredible testimonies to the benefits of going gluten free and having a healthier diet. I'm definitely looking into a pescatarian diet. I've been eating far too much red meat and carbs with gluten and I have been feeling it
                            To each their own

                            Comment


                              #15
                              Monk Fruit sweetener -0- calories -0-additives 100%made from fruit

                              I am posting this again, I don't get any financial reward from Monk Fruit, but after you try it, you'll feel the same as me. It is at most regular grocery stores. But you'll probably have to ask in order to find it. I found it by asking at my grocery. It was in the sugar isle, but way up on the top shelf that no one can barely reach.

                              Each item gets its location by their "whatever" with the store. But Monk Fruit obviously has no "financial or whatever connections," because it is located in a spot most people will never find.

                              So just stop on arrival, and ask at the front desk for the location.

                              And it's not that expensive, only around three dollars.
                              I already know you will approve of Monk Fruit.

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