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Gluten-free diet huge success for me so far!
12 Replies
Amador - May 16

Hi! I've just wanted to post this to help others suffering from this terrible "disease", I know how determined someone can get to find somekind of a solution to fibromyalgia. Well I started a 100% gluten-free diet 3 weeks ago and the results are far above my expectations so far, my pain has at least HALVED if not more! I could already feel the difference after just a few days.

It's actually a very hard and strick diet to keep, no gluten means no bread, no biscuits, no paste, no beer at all, not even once. Actually it means not eating anything that is made of white bread flour, rye or barley, which is a high percentage of modern food, but it's a sacrifice I'm willing to make to get rid of the pain.


January - May 17

Hi Amador - gluten free REALLY helped me too! (What gave you the idea to try this diet??) It took a lot longer for me to notice the pain relief, but I would never go back to eating processed food. I tried a couple times - one hot dog on a bun, and I had SEVERE joint pain for weeks!

The gluten problem goes from very severe to not so severe - it's a continuum. Dr. Alessio Fasano has shown that 1 in 133 people has celiac disease, the most severe form of gluten allergy. But other research shows as many as 1 in 7 people have some kind of gluten intolerance. Unfortunately, celiac disease and gluten allergy is not really taught in US medical schools, so most doctors don't even think to check you. It's been (until recently) considered too "rare." Also, it was thought to be a childhood gastrointestinal allergy -- but lots of people have "silent" celiac disease for life. PAIN and DEPRESSION are major symptoms.

So glad you have gotten some relief - and so quickly. And glad you posted this - to encourage others to try it. As you say, it's a strict diet (gets easier once you learn it) - but it's a healthy one in general.

And PS - if anyone out there is interested - if you are still eating cereal grains and flour, you can ask for a celiac antibody blood test to see if you have a gluten allergy. It might be the cause of your pain. If so, you don't need drugs, just a gluten free diet!


cabingirl - May 17

I too have discovered that a gluten free diet decreases my pain significantly. It is difficult to stick to for me because I love beer! But even just a few beers puts me in pain for days. I quit drinking altogether for a month and felt really good. I'm having trouble thinking about a life of camping, kayaking and campfires without beer, but the pain is no longer worth it!!


Karkel - May 22

Is this sorta like the Atkins diet ?


January - May 22

YES. I have a friend who does Adkins, and she tells me it is a lot like my gluten free diet. I have to be more careful about minute amounts of "food starch" - like what is in most big name frozen dinners, soups, condiments - most pre-packaged food. And I can't have soy sauce that is made from wheat. I have to read labels really carefully. She can have a little bit of wheat or cereal with no problem - but for me, a pinch of that stuff starts the pain cycle all over again, and it takes months to recover. I have to be really strict and avoid all cereal grains, even oats and quinoa. I have to make sure my meds are gluten free. It's hard to go out to a restaurant - although some of them are better now about keeping your food gluten free. I've been to places and ordered a "gluten free salad" which then came with croutons! LOL! That doesn't work! Even if I pick them out, they have contaminated the food, and I get sick…. live and learn.


Jocelyn - April 17

Hi January,
I haven't seen you on here for a few days. I hope you are feeling well.

I was just reading posts about gluten free diets, because I just started on one and I read something that concerned me in a couple of posts. A gluten free diet has been compared somewhat to the Atkinson's Diet???? Maybe I read wrong.

The reason this concerns me is that my heart doctor in Boston told me that they did test on people who were using the Atkinson Diet to lose weight. She said that the weight loss was great, but when they took a look at the arteries of these people, they were in bad shape. She told me in NEVER to use the Atkinson Diet. What you see happening on the outside looks great, but on the inside is not.

I sure hope this gluten free diet is nothing like it because I would hate to have to go off of it. I really think they are two different kinds of diets. I'm going to need to research this some more.


kvc33 - April 18

The Atkins diet (not Atkinson) is a high protein diet that encourages consumption of fatty animal protein such as bacon, red meat, cheese, etc. A gluten-free diet has nothing to do with that, it simply means avoiding all grains and products that contain gluten. You can have fruit, vegs, nuts, seeds, and bread, crackers and pasta made with rice flour. Meat, chicken and fish too. The only parallel is that the Atkins diet stays away from breads, etc because of the high carbohydrate count in those foods. The reason is different and so is the diet. It's your choice whether you eat animal products or not.


Jocelyn - April 19


Thanks so much for the clarification and I apologize for calling it the Atkinson Diet instead of the Atkins Diet. My daughter got married at the Atkinson Country Club and that name must have stuck in my mind:) Fibro Fog! I am enjoying the Glueten Free Diet. I thought what I read on the post was incorrect when the two diets were compared to be alike. I will continue on my new diet and hope to find some relief or at least feel better all around. We will see, I am only on week 1.

Thanks again and stay well!


January - April 19

Hi Jocelyn and kvc - I have been offline for a while, feeling really tired. So I've been sleeping. You know how it goes.

I'm the one that stated above that my friend (who was doing Adkins) and I (gluten free) compared notes, and felt the two diets were very similar. kvc is right, Adkins has you eating tons of meat and dairy products, and avoiding carbohydrates. Gluten free avoids all gluten-based carbohydrates (cereal grains), but you can have other carbs. The way my friend was doing the Adkins diet, and the way I was eating, we found many similarities - mainly that we weren't eating breads, donuts, cake, pie, etc. But I don't know the Adkins diet well.

As long as I don't eat cereal grains (wheat, barley, rye, oats, quinoa, etc.) - or anything made from them, I have a free range of foods. I eat carbs like rice, potato, corn tortillas, etc. I COULD be eating a lot of meat, but I don't. Only a little, and mainly fish. My friend was also doing as I was, eating various types of meat - but in greater quantities.

The tricky thing about gluten is it's in all sorts of places you wouldn't think - soy sauce is usually made from wheat! Gluten is in modified food starch, some maltodextrin, used as filler in medications, in condiments, dressings, sauces of most frozen dinners and even most bagged frozen vegetables! Depends on how sensitive you are whether you can tolerate a little gluten, or whether you have to be very strict. I have to be very strict to avoid pain, depression and exhaution.

Jocelyn, good luck on the gluten-free. Once you learn it, I think it's a healthy diet! It took me about a year to notice really significant results, but that included some accidental ingestions and backsliding, which will put you back to square one. If you have a gluten problem, your small instestine gets inflamed, and will need to heal after every gluten exposure.


Jocelyn - April 19

Hi January,

I am so sorry you had a bad spell. I figured that is why you weren't here or that maybe you are on another web sites. I am glad to hear that you follow the Gluten Free Diet and that your friend was following a similar diet. I was worried when I heard someone you knew was doing the Atkins Diet and after talking to a heart specialist in Boston and knowing about their findings it set off an alarm. I just talked to this doctor last month and she said that the Atkins Diet has made some changes, but they do not feel it is significant enough, so her advice is anyone on it, get off it. A gluten free diet is just fine. Your just re-arrange your food to contain ingrediants that you are sensitive to as you stated above. Fish, and Chicken are great, other meats need to be eaten in moderation.

I have found it difficult to fine gluten free without soy, but I have accomplished it! I have not been on it quite a week yet and believe it or not, my asthma which has been killing me for years, along with shortness of breath, is actually improving. I have not had to take any of my inhalers for the past 2 days. This is exciting news for me. My breathing seems to be so much easier. I do think it is because of this diet. I am going to stay on this diet forever, even if it just helps my asthma, that is a big thing for me!

I take a magnifying glass with me to the grocery store so that I can read everything. I even found out that one of the fish oil capsules I was taking contained soy, but there are other ones that don't. is, like you said, every little thing needs to be looked at.

I am hoping to find some pain relief but my main problem causing my pain is that I am producing knots from my waist down. These knots tighten up my muscles and cause me such pain. My PT is helping me learn to work them out myself. I hope I can get better with this stuff because it hurt so much from my waist down. My upper body can hurt too, depending on what I do, but I am working on that too, but it is not as bad.

Take care....glad you are up and about again.


January - April 20

Hi Jocelyn - yes, I was exhausted AND spreading myself thin with a lot of extra things going on here! As you get older the fibro really does wear you down, I'm finding.

Not sure what you mean about doing gluten-free without soy…? Why are trying to avoid soy? Some people do because there is some link to soy and inflammation, and they feel it bothers them. But my remark above was only about avoiding soy sauce - most of it is made from wheat. But soy is a different matter - soy milk and tofu come from soybeans - and I have no problem with those foods. I have even found a soy sauce that is NOT made from wheat - it's Tamari - and works just as well as soy sauce, which I love. But everyone's different. Maybe you have found you feel better without soy - other people on here have stated they avoid it.

Interesting about your asthma - I too was a bad asthmatic with allergies. I'm better, my immune system is better, on this diet. I just read a letter to the editor from a woman who was diagnosed with early osteoporosis - her doctor was smart enough to advise her to go gluten free, even though she didn't have the "typical GI symptoms." (I'm floored! Usually they know nothing about gluten!) There are SO many problems that come about if you have gluten intolerance - you can't absorb nutrients, so of course you develop all kinds of diseases like osteoporosis, infertility, autoimmune diseases, etc. and your immune system isn't strong enough to fight off infections. You may know about this book already, but Dangerous Grains really opened my eyes about the SERIOUS complications of gluten. It's available as an e-book on the internet.

You don't mention where the knots are - if they are in your big muscles, you might check into getting lidocaine injections, along with massage. I had lot of knots (before I went gluten free also, so maybe that helps to diminish them!) The really big painful ones were in my upper back muscles. I found an MD anesthesiologist/ acupuncturist who used a small bore needle, and he was great with pain control. He gave me tiny shots to numb me, then went deeper into the knots with the small needle. I also had pretty strong weekly massages, where my therapist would press hard on a knot (painful!) but eventually, it would seem to "release." I probably had about five sessions of the lidocaine injections (one was by a regular MD who used a regular size needle - Boom! One big shot - and I almost went through the roof! So you need to explain about the small bore needle and numbing you up slowly as they go in. The anesthesiologist took his time and made sure I was not in pain. Those knots went away and in 10 years have not come back! I talked with someone else on this site who had lidocaine injections into knotted muscles in her legs - and she had good results too.

Sorry this is long! Hope you are doing well tonight!


kvc33 - April 20

Jocelyn, I know someone else who had bad asthma for years and it cleared up once she went off the foods she tested allergic to. I don't know what your food allergies are, you might want to get tested. Gluten may be your main problem or you could have others as well. If you are avoiding soy for the first time perhaps soy was bothering you as it is a common allergen. Anyone who has environmental allergies should get tested for food allergies because once those are addressed it can reduce or eliminate the environmental allergies. I have been avoiding my allergic foods for 16 months now. I don't do it one hundred percent. Believe it or not, food allergies have turned out to be the cause of my Restless Leg Syndrome which a lot of us have. I have experimented with the foods and sugar doesn't seem to bring on the symptoms and I can tolerate small amounts of wheat and diary. Too much however and the RLS comes back that night and I also get diarrhea with corn or too much diary. I did not have gastro-intestinal symptoms except gas before I went on the diet but now my body lets me know when I have had too much of an offending food. Apparently only 50% of persons with food allergies have gastro-intestinal symptoms. I wish I had better will power but I love chocolate so I get milk and sugar with that. Sometimes I make my own chocolate with agave syrup but lately I've been falling of the wagon and eating Mars bars.


Jocelyn - April 21

January and kvc33,

It is so nice to hear from both of you and, January, your post are great, they are never too long. I will look into the book you suggested, it sounds great and I have a kindle so I will download it and give it a good read.

Just to let everyone know, I have already been tested for food allergies. But, I ignored my test results and kept on eating everything I was already eating before. I am high allergic to walnuts, soy, tomatoes, wheat, shell fish, apples, and on and on etc. As far as being tested for all other allergen's, I've done that too...and I am allergic to everything that grows outside and dust and on and on. I have had a bad immune system since I was 12 years old. Lots of allergy shots, but had to stop because for some odd reason I started to react to the shot.

That is the reason I am going gluten free, plus soy free because I am very allergic to soy. The tomatoes are another story. Since I was little girl my mother always had a garden and now my brother does too and tomatoes are one of my favorite things. I even eat tomato sandwiches which I love. However, I used to have a lot of stomach cramps and the diarrhea, as well. Since I have cut out what I know I am allergic too, my asthma is much better. I feel breathing is easier and it has only been 1 week. I'm also lactose intolerant.

Now, the knots....thank you, January, for the information. My knots are all over the place. My hip and back seem to be the worst places. My back gets so stiff, to be honest, that I can hardly reach to wipe my butt sometimes. So...since I am now back to painfully walking I am getting some of that back. I am working with a PT trying to learn how to get the knots out, but I am only going to give it a year. If by the end of this year, the knots are still in the big muscles, I will see a pain person and get those shots since they have worked so long. I thought the shots were only short term. Good to know, thanks so much! I am going to keep that one in reserve. I think I will need it during the winter when I can no longer walk outside and I hate tread mills. I never will use it.

kv33, you are so funny falling of the chocolate wagon. I am trying to keep my sugar down because my triglicerides were a little high and I am hoping to get them down. I think it is sugar that drive that. Anyway...Thank you both. I am now going to take a hot bath, painfully roll out some more knots and pray things get better.

Take care, both of you...I'm thinking of you always!!



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