About me
Kelly and Corbin at Coolspot
After suffering three years with Fibromyalgia, switching doctors multiple times without finding relief of my symptoms, I became an advocate for my own health. I have been using my skills as a librarian to research what might be the root cause of my symptoms. As I came across information on Gluten Sensitivity, I was shocked to find many similarities to my troubles with Fibro. My goal is to make others aware of this disease while healing myself.
Through out my research over the past year, I have found many alternative treatments that have helped greatly lessen my symptoms. With modifications to my diet, and by limiting my exposure to chemicals I have been able to stop taking many medications that were prescribed by my doctors, with their expressed permission.
I truly feel that nutritional deficiency is the root cause of this syndrome, but no major research will ever be done to confirm this because there is no financial gain for pharmaceutical companies if they pursue this. If you are interested in seeing if this might work to relieve your symptoms, please read my getting started page.
Please feel free to contact me via email at kelly@glutenfibrofree.com if you have any questions or if you would like to share your story. Having the support from others is an essential part of the healing process.
Happy Healing,
Kelly Stanchfield
PO Box 78
Battle Ground, IN 47920
Wow, thank you for this blog! Seriously useful info. Thanks!!!
Love the blog. Keep up the good work and let us know if there is anything we can do for you. Best wishes from the entire GlutenFreePromise.com team.
I, too, was told I had fibromyalgia, when in fact I had celiac disease. My own saga went on for years.
You should have your blood checked for celiac antibodies, then see a G.I. for an upper endoscopy to confirm the diagnosis.
Celiac may be the underlying cause and you don’t need G.I. symptoms for a diagnosis. Widespread pain and fatigue are often related to vitamin malabsorbtion……Lisa.
Lisa, Thank you for the advice. I went yesterday to get more blood work done. I thought I had an upper endoscopy done when I went in for a colonoscopy in March. Every thing was normal except for a couple of polyps, which were benign. They said I was pretty young to have those, but I shouldn’t worry about it. I have had a skin rash since the age of 13 when I was diagnosed with IBS. The skin rash is going away now that I have been GF for about 3 months. My doc said the blood tests should still be positive even though I have been GF for that long, but I’ve read that if you present with skin problems blood tests and small intestine biopsies can be normal. They had to stick me three times yesterday to get all the tubes filled. I passed out!
I am amazed to find this website. Was diagnosed with fibro about 10 years ago and have been gluten free for at least 5 of them. All tests for celiac have come back negative. Once in awhile I cave and eat something with flour and then usually react with fibro symptoms.
Forgot to add, my biggest reaction is a rash that spreads from my face that spreads to neck and down.
Thanks for sharing Wendy. So you have found some relief from your symptoms by eating Gluten-Free? I have found considerable relief eating GF, but I’ve also had to cut out processed foods, especially foods with MSG. I have found that eating organic also really helps. I seem to react to the chemicals in food more than anything else.
Thanks for posting your experiences. It’s great to hear about your improvement. I have had the same experience — I was diagnosed with fibro about 12 years ago, in my mid-20s. I resisted cutting out wheat for many years. That is, until I met the director of a FM and CFS support group in a major US city who said that all the people she knew in the group who had tested for gluten sensitivity found major relief on a gluten-free diet. I also cut out casein (milk/dairy protein) and nearly all my symptoms went away. I have also given up sugar, MSG, caffeine, soy and chocolate. I called a national fibromyalgia advocacy group and asked if they had done any studies on foods and fibro and they pretty much dismissed me, saying, “No, not really. We’re focusing on other connections.” It’s too bad that there isn’t more research in this area, since I keep meeting more people all the time who have discovered this connection.
Jen, I too have given up MSG and soy. I’ve really cut back on my sugar, carbs and chocolate. I’m definitely looking at cutting out the dairy because I know that it is hard to digest. I feel like I have given up so much already. It is a still a struggle some days, but I am feeling much better. I’m also looking at giving up corn, which might be even harder than giving up the gluten.
I really think that the reason there is no research being done to link food to Fibromyalgia is because there is no profit in it for pharmaceutical companies. They are the ones that fund most of the research done here in the U.S. I personally think that there is a connection, for sure!
I too was diagnosed with Fibromyalgia, for years I searched for help it, or find out an alternative. I even organized a Fibromyalgia Support Group when I was told by a Rheumatologist that was what I had. But I kept searching… Finally, I asked my doctor to test me for food allergies, and it came back that I’m allergic to Wheat. So I stopped eating Wheat, and found I felt much better, but sometimes I would still get sick and hurt all over and break out in this rash. So I went back to the doctor and asked about this, he then finally noticed the rash, the typical Dermatitis Herpetiformis, that often accompanies patients with Celiac Disease. Well I’d already cut out all wheat so cutting out gluten wasn’t that hard.
I feel like a new person. I also have some other issues that may be because of CD, but they may stand alone. The worst is Meniere’s Disease, they don’t know what causes it, but some doctors think it may be an autoimmune disease.
Sorry about the long note, I just wanted to share how close our stories are.
come visit my blog about living Gluten Free,(http://glutenfreegreenie.blogspot.com) I’ve also started a blog about living with Chronic Illness. (http://picnicwithants.blogspot.com)
@Wendy
Wendy, Thanks for sharing. I’ve added your links to my blogroll so I can follow up with you. I’ve now been GF for six months. My skin is clearly up wonderfully. It is too late for a skin biopsy or a biopsy of my small intestine to check for CD. I did have a doctor run the blood work, but it was three months into eating GF. She said that if I had the antibodies they would have shown up regardless. I had negative blood results, so I have been labeled Gluten Sensitive and my doctors advised me to continue following a GF diet since it has helped alleviate so many of my Fibromyalgia symptoms.
Thanks for the comment on my blog! (The bread definitely makes it or breaks a good french toast!) I’m so glad to find yours! I love hearing stories of people with diseases/disorders other than Celiac that are healing through the gluten free diet. Keep it up!!! I’m also gluten and dairy free, low sugar, little or no soy, no MSG, organic as often as possible. It has changed my life.
I hope you don’t mind I’m going to add you to my blog listings ok?
@Kelly
I hate to say it, but your doctor isn’t exactly right. The blood test often has false negatives, especially if you haven’t been eating gluten.
My blood test came back negative too.
Hopefully, they’ll have better tests soon.
Good luck! It gets much easier after you’ve been on the diet for a while.
But beware, I kept getting sick and couldn’t figure out why, and it was in my shampoo, makeup, soap…. I know you don’t eat these things, but your hands touch your mouth a lot, and make up is so close to your mouth (especially lip stick). Oh and of course, when you are showering your shampoo and conditioner often get in your mouth, and if you have long hair….
It’s a gluten filled world out there! But it’s getting easier.
Cheers,
wendy
I wanted to let you know that there is something wrong with your feeder, I subscribed to your blog through it and it isn’t showing your newest updates. The last one it shows is “Nitrates, Gluten or both?” and it shows that it was posted Aug 21st, actually is shows that all your post from your original “P.F. Chang’s” post through “Nitrates, Gluten or Both” were posted on August 21st?
I use feedburner, so I don’t know how to help you with this one.
Good luck,
looking forward to future post.
Kelly – Happy to hear you tried the chocolate chip cookies, sad to hear they didn’t live up to our standards. Would you contact me directly via email and send me the lot number, printed on the side of the tub.
Thank you and I look forward to hearing from you.
@Declan Galvin
Declan,
I didn’t think the cookies were that bad. They actually had a nice flavor, I just expected them to be a soft cookie since the Udi bread is soft. I was unable to find a lot number on the side but there was a best freeze date. Was my grocery store suppose to store them in the freezer? Maybe they dried out a bit and got hard in shipping? I’m willing to give the product another shot. I’ve always enjoyed all of Udi’s products. You guys need to make hot dog and hamburger buns!
Thanks for following up with my review.
Kelly
Thanks to you !
Thanks !!!
We share the same priority against gluten. That’s why I write the name of your site here :
http://sophieethugues.eklablog.com/autres-pathologies-c101814#/fibromyalgie-a630600
In order to help people who speak french and want to eat without milk and wheat
Sophie
I’m a RN who has lived with Fibromyalgia for 16 yrs. I have been on everything they could throw at me. About 7 years ago I too decided to take control of my health. Fibro is all about lifestyle..what we eat, how we approach our disease & how we live our daily lives. Preservatives, artificial coloring, MSG, sodium, sugars, & high fat foods are the things I have increased FM symptoms. I look forward to learning more about gluten effects on the body, with two autistic nephews I am beginning to see the effects. Thanks for a great blog!
Sheila
http://www.newsouthernpantry.blogspot.com
Hello! I randomly found your blog and thought I’d say hi
I was just diagnosed with Celiac about a year and a half ago…. I’ve taken the challenge head on and am trying to perfect my dessert recipes to start my own bakery. I have a few recipes on my blog, but I’d be happy to share recipes (or send you some goodies if you are craving any).
Good luck!
Nikki
Hi,
I just stumbled upon your website and thought I would add some stuff I found so far. I have been diagnosed with Fibro and CFS for 4 years but had symptoms for much longer. My gastro doc did the blood test and it was negative. He swore that it would make no difference for me that I was not celiac or gluten intolerant. Within 3 days of being gluten free my digestion regulated. Also, I use the Zeo to measure my sleep patterns. Before going gluten free, in 3 1/2 months I had 2 nights where I got more than 1 hour of deep sleep. I usually get 10-30 minutes of deep sleep. The first 2 weeks of being gluten free I had 5 nights of over 1 hour of deep sleep. I haven’t felt deprived of any food and I am so encouraged by all the food out there that what started as a trial has evolved into a life plan. I love it. I am still learning and think there might be some contaminants I’m exposed to but unaware of, hence I found your site. I can’t wait to tell my gastro doc. I’m wondering if lyrica capsules have gluten? Wouldn’t that be ironic? Anyways, that you for the website and another resource. Anyone considering going gluten free – it is really worth it. I’m am just starting the reap the benefits and I encourage you to try it even if your doctor says you won’t respond like mine did.
All the best,
Nicole
I feel like I’m reading my story, over and over. This is exactly what I have experienced. Fibro for years and years. I got sick two summers ago and couldn’t eat for 17 days, but my pain was gone for the first time in years. I will forever be gluten free.
I found your blog by searching for Udi’s buns. I can’t wait to get some, my entire family has gone g-free with me and my middle son loves hotdogs….right now he eats them on udi’s bread. I want to surprise him with real buns! Thanks for a fun website to visit.
We are here to help you and your family!
Great job on this site, I also added it to my directory.. Very useful I just learned one more thing about Fibromyalgia and Gluten.