Last post Mon, May 12 2008 10:13 PM by jassak. 19 replies.
Hello all-
I am new to the site. I was surfing around looking for fibro sites that weren't sponsored by a drug company! I have been dealing with CFS for 20+ years and fibro for 5. My rheumatologist hasn't diagnosed me with anything officially as he doesn't want the insurance company to flag me as a high risk person. He wasn't ready to diagnose me with fibro but he did give me the unofficial diagnosis of Sjogren's- which is linked to fibro. I consider myself a fibro/CFS/Sjogren's/osteoarthritis combination. I am so lucky!
Anyway, I wanted to pass on my experience with giving up wheat. I had IBS symptoms and had a celiac panel drawn (a nice $750 expense). It showed that I didn;t have celiac disease but I did have anitbodies to wheat. After doing some research, I found that if persons with wheat antibodies continue to eat wheat, they continue an overall inflammatory response which only makes our disorders worse. I pulled myself off of wheat in November. I found that my IBS went away as well as 10 pounds of post baby fat. My fibro fog has gotten much better too. My skin rash on my face (that I have had since I was pregnant with my daughter 6 years ago) has gone away. I am still taking my Ultram in the morning and night with Flexoril at night but at very small doses. SO, there seems to be something to this wheat thing. If you are familiar with the Eat Right 4 Your Blood type, I am an O so I shouldn't be eatng wheat anyway. Very interesting. Unfortunately, I figured this out too late in the semester to save my grades so I will have to retake two of my classes courtesy of fibro fog. I now know that I can only manage 3 credits a semester! It irritates my advisor (who is not the most sympathetic person to fibro) but oh well....I also take curcumin, black cohosh and lots of B vitamins to counter the loss of breads and pastas. I eat alot of brown rice and I can tolerate the Eziekel sprouted wheat bread. Brown rice pasta is good too. Lots of fruits, veggies, and lean meats. This diet keeps you on the right track at least.
I hope this helps some of you. I am not at 100%- maybe 80% but that is much better than 0%!
Welcome to the site!!!
Very interesting! My nutritionist and I are working on transitioning me to a Gluten Free diet. After gluton, we will consider dairy – but I work for a dairy company so that may be hard! I can at least reduce dairy even if I don’t eliminate it.
Humor is definitely my coping machinism- I am my own best material! I had two classes with major assignments. I would write them up and review them a few weeks later only to see huge errors and mistakes. One professor even thought that one part of a paper sounded like a different person authored it. I had to laugh at it. Fog taken to new levels. As for the fatigue, I found that doing yoga helps the most with that. I do Bikram yoga which is the crazy hot hatha yoga. You do 26 positions in 100 degree heat for 90 minutes. The heat makes my joints feel great though. I do better with taking yoga in the morning. It clears my head for the rest of the day and I have much more energy. It is probably the best thing that I do for myself. I try to go 3-4 times a week. I absolutely love it. It also gets your heart rate up so you are doing cardio and resistance training at the same time. Also, when I cut back on the wheat, I did find that I didn't need my usual afternoon coma nap (while I ride in a van pool to and from work). The Eat Right for Your Blood Type was recommended to me by the yoga instructors I have. I feel much better and don't have to worry about the IBS as much anymore. It's certainly worth the look. I didn't feel much benefit from the probiotics the author has but my husband swears by them. The website is www.4yourtype.com.
Thanks for responding to my message. I have an understanding husband but it really takes a fellow fibro person to truly understand. Take care!
I had to cut back on dairy too. I eat Mozzerella and I have skim milk with cereal. I found this almond milk made by Blue Diamond that is to die for. I buy the chocolate milk as a big treat that doesn't bloat me out. And you get all of the omega 3's from the almonds. The Gluten Free thing is quite an adventure. Wheat Gluten is in everything and it took me 2 hours to go grocery shopping due to the label reading. When it says "Gluten Free" they feel compelled to charge you two more dollars for a box of cereal. The best one I found was Crispix- rice and corn for the low, low price of $2.58 a box (as opposed to the smaller $5 box in the gluten free section.) Anything that is modified starch is wheat based. I make my own gravies by buying organic beef broth and add corn starch as a thickener. I am just now getting a little creative with the wheat free cooking. I'm stir frying everything at this point. I hope the diet modifications work for you. It's work but you do feel better. BTW, dollar stores are also hidden treasure troves for gluten free products too. I'll pass on any other pearls of wisdom I happen to encounter!
You know leave it to me to get a designer illness. I swear fibromyalgia is soooo expensive. Between the additional medical appointments, prescription, therapies and let’s not forget the parking fees for all of these! The missed work, non insurance covered therapy and the special diets – we are talking a lot of money. The priceless part is the suffering of your quality of life with pain and fatigue. I’m so glad to have found this site to be able to trade ideas and treatment possibilities. We all know what works for one may not work for others, it is still great to be exposed to the great ideas and rejoice when someone has found relief. It truly inspires me to fight a little harder and not give up.
I am soooo blessed with friends and family that are really supportive – keep me in line when I’m doing too much or the wrong things – but there is something about the kindred spirit that adds special sunlight to this twisting journey of fibromyalgia.
Speaking of designer diets – here are a few resources I have come across as I am researching gluten diets.
http://freshnat.users18.edigita.com/uploads/brochure/GF_brochure3.pdf
This brochure provides some primary sources of gluten as well as a list of gluten free vendors
http://www.gicare.com/pated/edtgs06.htm
http://www.publix.com/wellness/notes/Display.do?id=Diet&childId=Gluten_Free_Diet
These sites provides an overview of a gluten free diet
http://www.choa.org/menus/Documents/Wellness/teachingsheets/glutenfreediet.pdf
Patient sheet on gluten free diet
http://glutenfreeliving.com/ingredients.html
http://www.enjoylifefoods.com/img/stay_gluten_free_card_1.pdf
A pocket size reference card to carry with you
I never thought of the dollar store – great suggestion! Please keep them coming.
Monique
I have been on a few of these sites. The amount of info is overwhelming! The cost of dealing/ treating fibro is substantial. There are somethings that we need as a group that are not covered under the Flexible Spending Accounts fro medical- like message and supplements. I had my MD write a prescription for yoga and message. I'm going to trry submitting the expenses and see what happens. It would be really cool not to have to pay taxes on yoga and supplements!
I would like to share my miracle, for Fibro.
www.wecarenewsgram.com for more info e-mail me at brendagross@comcast.net
wildorchid
I too find my pain to me lessened considerably when I avoid wheat. I don't have much else to add except, "Me too!"
Julia
Here is another resource. There is a great shopping list on page 4.
http://www.celiachealth.org/pdf/GlutenFreeDietGuideWeb.pdf
Hello I don't want to seem I'm butting in. So, please forgive me. I was just told the other day by a pain management doctor, that I could be suffering from celiac disease too. My blood test did come back negative. I have fibromyalgia and Lupus. You seem to be well informed on Fibromyalgia. Should I maybe try this gluten free diet? You seem to have alot of what I am suffering with. You have so much going on. How do you do it all? I'm so sick, tired, the pain sometimes is inbearable, and I can't sleep. I'm not a good Mom or wife. I'm so self involved right now. I'm on 9 different medicines.Which by the way I've read that if you have a gluten intolerence that vitamins and medicines are not your best friend. So, what's a person to do. I've just lost my way. I'm reaching out for someone who actually knows what to do. My doctor told me that I'm one of the most difficult cases that she has come across. The medicine is suppose to help. When does this thing go away? 6 years I have wasted and can't get back. Just need some info and someone who will listen. Thank you for posting some of your ideas in public so that someone like me can read and get some info that may give me my life back.
Flowergirl, Believe me I have been there for 7 years till I met a physical therapist from India. Paul Chhabra. He has a new book that just came out, Healthy Self.
The first thing he told me was NO white sugar, no white flour,better yet no flour unless it is whole grain,which is flourless bread, brand name is ezekiel, ususally in the freezer section. Also no chemicals or preservatives, stay away from dairy. So pretty much whole grains, almonds and other nuts,freshor frozen fruits and vegtables and small portions of range free chicken breast or beef once in a while,also cold water fish.
Paul Newman salad dressings are great, no chemicals or preservatives, I even marinade my meat in the dressings. If you start reading lables you would be discusted at how many chemicals and preservatives are in our food. So I eat no fast food, breakfast is oatmeal with soy silk milk, as sweetener I use honey,pure maple sugar,sucranaut,and stevia with no after taste (now brand is best) or fruit lunch fruit and or a salad, dinner meat, veggie and potatoes, I like sweet potatoes, with butter substitute,cinnamon and maple syrup. I have learned to make some no bake cookies and a few other receipies that are good when craving sweets. Lots of water, distilled or reverse osmosis,is what I get.
Diet helped noticably within 1 week. Plus I lost 20 pounds,which I didn't need to so I had to up my food intake some.
Most importantly, 3 months ago I was introduced to a new supplement, stem tech,which supports the production of more of your own stem cells and I have never felt better. I can not believe the difference this supplement made,I joined the company on an auto ship every month so I get it cheaper , $40.00 a month,It works for all kinds of things which is explained on the web site. I will give you my site and some others so you can hear about the science behind it,Believe me I have tried everything and was skeptical. So I did my research and talked to people just like me and in 3-6 months they and I have no sympems any more and I can cheat a little more on the diet part, even though it is a very healthy way we should al eat.my site is www.blg.stemtechbiz.com
www.wecarenewsgram.com
www.stemhealthplus.com
I started with 2 pills 3times a day ,each 6 hours apart and now I am down to 2 x aday, as you feel better you can cut back. But for $25.00 you can join and get it for $40.00 on auto ship every month. I went the buisiness pack because I got 6 bottles my first order and then I have a web site to send people to because I was a hair dresser and every one wants to know how I got better and what other ailments It helps with. Which if you get on the sites and listen to the testimonies you will be amazed. It is the first and only product of it's kind and if you have good results like I did you can get your own site and referr people to it to check it out and if they order it pays for your pills. So it has been a life saver to me and I will share any info I have and can refer you to conference calls and people that know alot more about the science of it than I do. I just know it has given me my life back and I felt like a horrable Mom and wife many days when I just couldn't do anything I hurt so bad, I would throw up all day. So I hope I gave you some hope and what do you have to lose. Take care Brenda Gross
I have found a way, no white or wheat flour, only whole grain flourless, Ezikiel I like best, no white sugar,no chemicals , no preservatives. And ONE supplement which if you want more info you can e-mail me at brendagross@comcast.net
I went through 7 years of hell and diet change and 1 supplement and I feel great again. I am willing to help you with what I eat and use as a supplement. Now I don't go to the Dr. all the time , physical therapy,massage, drugs,and still feel like crap after spending a fortune, and who has the time or energy to work after all that.
That is all behind me now, thank god,and I will help anyone if I can because I have been there too!!!!!
I would absolutely give the "wheatless" diet a try. Ezekiel bread is a sprouted wheat with no flour so it is usually tolerated. Anything with "modified food starch" is a no-no. Basically, it's pulling yourself off of processed foods and sticking to friuts, veggies and lean meat. You may or may not need to eliminate dairy. I found that my IBS got much better when I cut back. I just have skim milk with my cereal or oatmeal and a little m ozzarella cheese. You don;t have to be diagnoses with celiac disease to be wheat intolerant. It's the gluten that is made that really sticks to our guts. If you can't remove it from your system, your body is in a constant inflammation process- trying to get rid of something it doesn't tolerate. If you can reduce the inflammation, you will feel better because you won't have all of those toxins running around. It really made a difference for me. The one thing I should have done better was replace my B vitamins more aggressively. If you eat a lot of fortified foods, you get more B vitamins. IF you cut back on the carbs, you need to double your supplements until you find the balance that works for you.
Good luck and take care!
Laura
