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DOTSLADY's Photo DOTSLADY Posts: 10,018
4/2/12 12:09 P

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I'm so glad you all have had results going gluten-free. I've been trying to share the same message for some time now. emoticon bit.ly/fibrogluten

KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
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NYTRINK's Photo NYTRINK SparkPoints: (18,193)
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4/2/12 10:24 A

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I'm so sorry to hear about some of the pain and suffing you guys are going through. I do not have celiac, but I did try GF for awhile (recommendation from my acupuncturist) - figured it couldn't hurt, and might help.

It certainly did help, although not right away. Over the course of a couple of weeks, though, I felt a much higher energy level than I've had in a looooong time. As of now, I am not G-free, but I do watch how much/how often I eat foods w/gluten. If I feel especialy achy, I will try to avoid it for a couple of days, which helps. I do notice it in my joints, overall aches, and energy levels - certainly a correlation, if nothing else.

I hope you all feel better soon - GF is not that bad (there are even GF pizza crusts, pasta, and all kinds of things - it's do-able.

~Katie

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TANKERBEAR's Photo TANKERBEAR Posts: 88
3/30/12 2:14 A

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gluten free and baking is not that hard :-) most recipes will transfer straight across for gf flour vs. wheat flour. remember that combining types of gluten free flours provides your best results... think texture and taste bean flours have a stronger flavor, tapioca is a lighter flour but can get gummy by itself... there is alot of information on the web and suggestions. It gets more tricky when you add in other allergies (the worst is eggs to sub for). There are a ton of recipes out there and even some prepackage gf items that are really good. There are noodles made from quineo, rice, corn and combinations. The only bad part is that they aren't calorie free ;-) but they are very good.

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3/29/12 7:13 P

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I've had fibro since a car accident in 1990. IN the last 10 years I've become anemic twice without any known cause. My hematologist said to try gluten free. Wow! Did I feel better! The fibro didn't improve so fast, I recall, but the terrible bloating & changes in BM was remarkable! I also lost weight because I was not eating as many carbs. I did it strictly for a year but then wanted the traditional holiday foods and began a year's worth of usually gluten free that turned into less bread & such but almost daily something. NOw, for Lent, I've given it up cold. Again the bloating & bowels improved within a few days, but last week I had the worst fibro pain I've had in years. So I don't see this close connection with fibro, but I am not anemic again because I am absorbing iron better and my gastro issues are so much better!

We are all in process...


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LAURIEMB1976's Photo LAURIEMB1976 Posts: 460
3/29/12 1:58 P

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I just had the blood test for Celiac on Monday, waiting for the results. Should be interesting to see if there is a link. I haven't gone gluten free, mostly because I read that the tests can not be done if you are gluten free up to six weeks before. Going gluten free will definitely be a test of my will power, as I'm a bake aholic. I'm going to have to re-learn how to cook and bake.

Good luck everyone ...

"To thine own self be true ... " Shakespeare




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TANKERBEAR's Photo TANKERBEAR Posts: 88
3/26/12 7:44 P

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I know exactly what you mean. I told my allergist that if everyone had the reaction to the stuff that they are not suppose to eat like I do to gluten, they would have 100% compliance! Another thing you also should know is that there is a strong connection between fibro and auto immune conditions. Allergies/intolerance are just one of many auto immune responses. Personally, I think that perhaps what is going on is that for some reason the over stimulation of the immune system is tied to the pain receptors and one triggers the other into over drive. Also chronic pain is known to make changes in the brain, which controls pain response.. so it may be a chicken and the egg type of thing. Don't know but yes there is a definite link between food and fibro management that is well recognized. Don't worry about the timing on the response, I know, reexposure can be awful :-( Mother's day a friend cooked a dinner for us that was suppose to be safe... worst response ever! Needless to say I am very careful about who I trust with my food now. :-( But here is to many days of successfully managing fibro with healthy choices :D

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3/26/12 11:01 A

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KRYSTALLAS,

thanks for your reply and my apologies for the late response.....I had a bad experience over the weekend which I wrote about in another reply, so my answer is yes....GF makes a huge difference for Fibro sufferers. Take care!

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3/26/12 10:59 A

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TANKERBEAR,

thank you so much for the information, and please accept my apologies for the late reply. I have eliminated all gluten from my diet since my original post and honestly, I have not felt this good since I can't even remember when. I have a long and sordid medical history of diagnosis and misdiagnosis (chron's disease, bipolar disorder etc). Saturday night we went to a reception and I accidentally got glutened despite my due diligence, drove home in agony with bloating, cramps, etc...woke up Sunday morning and felt like I had either the worst hangover of my life or had been run over by a Mack truck. Completely in a fog, couldn't think straight, off balance and practically falling over like a drunk. I think I feel comfortable saying that I have gluten intolerance. I'm with you, I don't mind giving up bread, past, desserts...etc. In fact Saturday night was actually a blessing because feeling great for close to a week, eating gluten and being in misery makes me know that there is NO FOOD on this earth that is worth feeling that badly for. I second the chemical sensitivity....perfumes and lotions I have used for years all had to be tossed, along with cleaning products that I've used forever. Thank goodness for vinegar, baking soda and essential oils. Take care and thanks again!!

BUZYGRAMMA's Photo BUZYGRAMMA Posts: 26
3/18/12 4:24 P

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I have been battling fibro since 1999. I have tried everything the doctors had given me. With no response to anything. I am finding ny body is not doing well with putting any type of chemicals. Whether it be parmaceuticals or food. I found after trying numerous different things that gluten was playing a big part in my pain. The more I eat of whole foods, the better my pain is. If I give in to processed carbs and sugar. My pain is greatly increased and I really suffer. I have talked with alot of different people with fibro and we have all come to realize that food is playing a big part in our pain.

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TANKERBEAR's Photo TANKERBEAR Posts: 88
3/18/12 1:16 A

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I have a diagnosis of fibro which I got before finding out about the gluten... and multiple other allergies/intolerances. I had extreme pain to the point that it felt like my bones where being crushed to move or to be lightly touched along with C-reactive proteins that went as high as 15. Between my doctor and I we finally tried allergy/intolerance as an option given that all other forms of treatment were not working and I kept getting sicker and sicker including loosing ground with asthma and breathing quality levels and uncontrolled swelling and many other issues. I had been to the alphabet soup of doctors trying to find something that would work or an answer about what was going on (neurology, rheumetology, gastroenterology etc) Nothing worked and they were stumped. So in desperation, I mentioned the gluten idea to my doctor and we decided to do an elimination diet and see how it went. I also eliminated dairy at the same time since I had a childhood history of trouble with this. What I found was that within the first 24 hours, I was loosing swelling water weight extremely and decided on the second day to check just to see how much... between noon the second day and 8 am the third the scale registered a difference of 10 lbs in water weight alone. In addition the agonizing pain (flare that never went down) became much more bearable. My husband could hold my hand without bringing tears to my eyes from pain. I still have trouble with my hands and I still deal with pain of fibro but no where near the over 10 on the scale of 1-10 that it was. I am able to keep it at a 7-8 which isn't great but considering where I have been it is so much better. After discovering the gluten and the dairy, I noticed problems with soy and eliminated it also. At this point, the doctor and I decided to do the celiac testing because a family turned up positive. Because of going gluten free first, the test is questionable there is no established time frame once going gluten free that reintroduction of gluten can give accurate blood tests, but I did go back on gluten for 2 weeks prior to the testing. I do not recommend it, all of the symptoms came back with a vengeance and actually took longer for the symptoms to go away afterward. The testing for celiac turned out negative (blood work). We did contact the gastroenterologist and asked what he wanted to do given the new information and (biopsy is the gold standard for testing for celiac). But after hearing that I had gone gluten free and then the reaction to reintroduction, his recommendation was to get me into see a nutritionist to go over balancing a diet without gluten. So officially, I am non celiac gluten intolerant. But either way, gluten does not agree with my body at all. I have since been referred to an allergist who is working with me to identify other food triggers. He said that there is a connection between food allergies and fibro symptoms, and that there is a strong connection between chemical allergies and fibro symptoms. I do know some of my doctors are amazed that I have been so compliant about the gluten free, dairy free, soy free and now a lot more allergy items free, but what I am finding is that if I want my traditional fibro treatments to have a hope of working, I have to avoid those food allergies. Somehow, traditional bread and cake and pasta just doesn't hold the draw when I know that I am going to hurt as bad as I do and that each time I get exposed it takes longer for it to get out of my system.
So far the allergist has identified 2 IgE allergies (tomato and almonds) and IgG came back with all dairy, all eggs, halibut, trout, apple, cataloupe, cranberry, grapefruit, honeydew, corn wheat, navy bean, black pepper, cashew, pistachio, mustard, olive and spinach... and we have diet challenged soy, gluten, and dairy (all positive by diet challenge). Because of the strength of my response to gluten, the allergist recommends that I include oats in with the gluten avoidance (gluten being: wheat, barley, rye traditionally with oats being on the list because of cross contamination).
Also, I know of others that have a direct connection with gluten responses to extreme pain triggers with fibro... so it is definitely worth exploring. For me it makes the difference between other treatments being able to even have a hope of working. Also, traditionally in addition to the meds, fibro is treated by diet and exercise so it makes sense to me that there is a strong food connection. Additionally, the numbers of those having issues with gluten is on the rise as well as the incidents of allergies. Being gluten free isn't hard to do but it does make you read labels and to learn which companies to trust and which ones to avoid. (but then having any food allergy/intolerance make this necessary). I find I actually eat better and pay closer attention to what I am putting in my mouth and body because I have to pay close attention to what is in the food. I also make a lot from scratch now and because of time, a lot more simple foods. More whole grains (brown and wild rice, quenoia, buckwheat, flaxseed) and fresh veggies and fruits and lean meats. The closer I pay attention to those things the better I feel. So at least for me, yes there is a connection and it means I have a bit more control over how bad I feel. I can't make it perfect but having some control is better than none :D


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KRYSTALLA's Photo KRYSTALLA Posts: 1,040
3/16/12 9:01 P

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I have fibro and have for over 20+ years. Last year I had some tests done for another issue I was having and as part of the test on the results I had been told I do not have celiac. But I had recently read an article that said if you suffer from alot of colds or allergies or have health problems like fibro among a list of others, you may have a gluten intolerance. I haven't started a gluten free diet yet, will probably be a long time before I can be totally gluten free, love pasta to much and have lots of products in the house with gluten in them. I have however started to look at products when I buy them to see if they have gluten in them or not. I also recently got the book Deliciously G-Free by Elisabeth Hasselbeck, which I had heard many good reviews on. I have gone through it and there are so many recipes in it that I am looking forward to trying out. Have to make a grocery list of all the g-free items that I will need to have on hand. I am looking forward to trying to be g-free for a few days to see if I notice any differences.

I like you would find it interesting to see if anyone that has fibro has gone g-free and have found if it has helped them at all or not.

Edited by: KRYSTALLA at: 3/16/2012 (21:03)
Lisa

Eastern standard time zone.


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3/16/12 6:45 A

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Hello everyone...just curious if anyone here has fibro along with a gluten intolerance or even celiac? Or if you haven't been diagnosed as such, do you follow a GF diet and has it helped at all (specifically with joint pain and or skin problems such as eczema). I am interested in ANY information or insight you can give me on this topic. Thank you all so much in advance :)

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