I have been trying gluten free too. Withdrawal only lasted a few days, I had headaches and extra fatigue. I haven't noticed any difference in pain or fatigue levels. The only change for me is my IBS seems better but I have only been at it for about two weeks so not sure this is long enough to see a difference.

Butterflii, check the barometric pressure in your area. Maybe that's causing the flair. The barometric pressure really affect my body, when it gets higher than usual I feel pressure all over, especially in my rib cage and head.

Or maybe you're just having a flair. One time I went to my doctor because I'd been having bad pain for a week. He told me to try as best as I could to just accept this as part of the disease. He wasn't being mean, just practical. He could tell I was getting wound up and anxious over the extended pain episode. After talking with him I've been able to calm down when a long period of pain comes along. Yes, I still hurt but at least I'm not freaking out!

Anyway, I admire you for trying to go gluten free. It's something I've thought about, but that's about as far as it goes. I'll follow your posts to see how you do. If you finally get some permanent relief, I will give the gluten free thing a try.

Best wishes as you go through this.

I've been gluten free almost a year and I have fibro and ms. The first week or so was the worst, and I remember going down the grocery store isle crying and depressed. I did have a mini flare the first week but it got better, and like you I hurt from neck to knee. My ibs has disappeared and my joints hurt still but not as bad. It's also helped with energy too.

I went gluten free five years ago after a celiac diagnosis. It is my understanding, if you do not have celiac or gluten sensitivity, your body requires gluten. You can make yourself sick by not eating gluten if you do not have celiac or gluten sensitivity. You really need to be tested and then guided thru an elimination diet with a Dr that knows what he is doing. I have found that I have multiple food allergies besides the celiac disease.

When I first got fibro one of the worst reactions I had was that my body rejected all types of food. It was allergic to everything that went into my mouth. When I got tested got allergies, it confirmed I was allergic to everything. This went on for years. The only thing that felt good was fasting for several days at a time.

I'm thinking that fibro effects something in the gut. Gluten might effect some people, but I highly doubt it's the main culprit. That's just my feelings and opinions which are based on all the elimination diets and such that I tried over the years.

Another weird thing during my earlier stages of fibro is that food reacted as if I had an alcoholic drink. I literally would get drunk after a few bites of food. Of course my blood work ups were always normal and was told it was all in my head. Being a male didn't make it any easier. This was the early 80's. Dr's thought I was nuts.

I think just hang in there and it's possible your body is reacting or it's just a flare for another reason.

I eat gluten free most of the time. Stomach and bowel problems are better. think it also helps with the fogginess and the pain a little bit. Well for me it's more the arthritis pain. I stick with it.
I know I have gluten sensitivity. It's so obvious to me as I know my body. got tested for celiac but nothing came back positive. but the thing is i was eating gluten free at the time and i didnt know you have to be consuming gluten foods for the test to read more accurately.
so i have a feeling it wasnt an accurate reading. anybow the doctor said if I feel it helps then stick with it. I didn't go for further testing. I just go by how I feel. The tests aren't always accurate.
Listen to your body people.
You know if you feel like shit after eating pizza or bread or whatever.

Like Sprawling said. It's not probably the cause of our problems but for some reason for some people certain grains can exasperate symptoms.
There is similar views that going gluten free can help arthritis especially RA.
It's worth trying for sure even if improves a couple of symptoms. Ya know?

There are gluten free grains to choose from. we don't have to have rye, wheat or barley. Gluten is a type of protein that is difficult for some to digest. That's all.

Rice, amaranth, quinoa, millet. Are grains or seeds that are GF and can provide minerals, vitamins, fiber. I think that is what the concern is for people who go gluten free and they miss out on consuming other grain alternatives to get the necessary nutrients
I really don't see much danger in going GF especially if you feel better for doing so.
If you feel better for doing so then that tells you your body doesn't like it.

There is alot of cross contamination of gluten in other grains. It has been found in alot of rice. After I was eating millet, quinoa, I noticed GI problems. After research, I now have to sift thru the millet and quinoa to remove the questionable gluten contamination. My Dr has had me to reduce the use of all grains due to the cross contamination that is present. It is not easy when you are very sensitive to gluten. Even products that say they are gluten free, does not mean they do not contain gluten, it means that it may have a low amount of gluten.

Countr
It sounds like you are very sensitive.
There are celiac sufferers who are extremely sensitive and they can't consume a food that's been on the same cutting board as a gluten grain because they react so severely. That has to be very difficult.

I have been GF for years due to Gluten intolerance. I tried it on my own so it was impossible to test me properly so the Dr. had me be vigilant for three months and then eat a good size gluten meal. It left me in no doubt as my stomach hurt so bad I could not straighten up all day. Then it took 72 hrs to even feel normal.

It will not cure fibro, but it takes one more painful situation out of my life. It is not a cure all and is for only people who cannot digest it properly.

It is difficult diet to follow as I must always be prepared wherever I go....snd when eating out the questions I ask drive my friends crazy. The slightest amount of gluten will effect you. You will have people who think you are just paranoid.

When necessary it is very helpful, you can usually tell in 3 weeks if it will help.