Not gluten free but avoid white bread. I only eat rye and soda bread :-) I also eat oats rather than bread if possible. And only brown rice.

I tried going off gluten for a while...made no difference. Back then, before I was diagnosed, I was trying all kinds of supplements and diets in attempts to regain my stamina.

My advice to people who are worried about gluten...don't go gluten-free unless there is clear evidence that you have celiac disease. I've looked over some of these anti-gluten articles and websites and they sound like quackery to me.

You have to be very careful about what you believe these days...there are all kinds of bogus claims floating around...the anti-soy garbage, the anti-canola hoaxes, etc. Don't latch onto whatever is trending and modify your eating habits according to some unsubstantiated claims online.

I have celiac. Diagnosed by biopsy during an EGD for other reasons. If I eat gluten containing foods my pain level doubles for about a week. Not worth it. However I don't usually have to go so crazy that I can't eat the cheese off some pizza. Some folks are.
I'm also sensitive to all other grains in general. They make my IBS act up and when it does that I just plain feel lousy.
I think it's worth a try if you aren't sure.
Remember it can take a long time for it to have an effect positively as you need to heal and you would need to be very strict in the beginning at least. I'd say if you are going to bother, to do it for 8 wks and keep a diary of how you feel. If there is no definite appreciable difference in your symptoms.... don't bother. It's kind of a pain.

I had a blood test for lots of allergens and showed no sensitivity to gluten. I once went gluten free to see if it made any difference and it didn't. However for weight control reasons I try to stay away from any carbs.

For years I had an upset stomach and was coughing up a lot of crud (mucous). My acupuncturist said I was gluten intolerant. So, I had a blood test to find out. ( I come from an Italian back ground and the thought of giving up bread and pasta was painful as well as nearly sacriligious!) The test revealed that I was allergic to wheat. Much to my dismay, I stopped eating wheat. And this was before there were a slew of decent alternatives, so it was really hard. Anyway, my stomach feels much better and all the inflammatory symptoms went away (ie: mucous) as wheat is an inflammatory food. Since wheat has vitamins in it, I use a B6 and B12 supplement to try and cover what I'm missing from eating wheat. If you are getting tested for celiac or gluten intolerance or wheat allergies for your symptoms, that's great. The other thing to do would be to just stop using wheat for several weeks or a few months (whatever you can tolerate) and see how you feel. If you suddenly begin to feel lousy again after re-introducing it to your diet then you'll have some information. Oh, my naturopath said that the whole wheat breads are the hardest for gluten intolerance as they have the most gluten in them. Food issues are hard. I wish you luck and hope you don't need to do this. It's a bit of a drag, but it's not the end of the world if you do. It beats feeling sick!
Hugs!

Thanks for your responses. This really is helping me decide.

I've been at this indecision several times along this CFS journey (but always decided not to do it) and its come up again because a few of my caring friends who have watched me go through this illness of CFS suggested going off of gluten for a while since one of them has a friend who did so and got so much energy back (but she didn't have CFS). Thus my friends think that I should give it a try too. It's a nice thought and I love it that they care, but I just don't know...I'm not sure that this would do anything for me and its a huge lifestyle change for me & also for my family that I share meals with (especially since they cook the meals too).

Does it really help your energy levels to go gluten free? Or did it just ease up your other digestive system issues. I was diagnosed with gastritis & IBS more than 5 years ago and I've changed my diet some to not eat foods that make me have issues. I've never been sure that wheat is an issue for me (maybe I'm in denial since I love my bread & pasta so much). I have asked my primary care dr a couple years ago bout going gluten free and he doesn't think that would have anything to do with/any impact on the CFS.

Thus the indecision and curiousity to see how many of you can eat gluten and who can't and if there is a correlation to CFS. So thanks so much for your imput, you are giving me a lot to think about.

Another thought: it is tricky with family cooking meals for you, but there are so many different products now that can be substituted for wheat. There are good pasta's ( I love the corkscrew kind), g/f breadcrumbs for use in meatballs or breading, croutons, all different kinds of g/f pancake batters, muffins, brownies, etc.... etc... I made pancakes for Christmas and no one knew they were g/f. So, you just might want to try one or two things. If no one want s to eat your g/f pasta, cook a separate pot with your own pasta. Make your own toast. My husband is nuts about angel hair pasta (so am I!), but they don't make angel hair g/f, so I just make my own other kind. Just start experimenting with one or two things. If you make a sandwich, toast the bread first otherwise it's not that great, but toasted is fine. There are also some great g/f muffin mixes. Talk to the people you know and see what they like and talk to the folks at the health food store who are familiar with g/f. Just start trying some things, you don't have to make a life long comittment and change everything all at once. Good luck!

Oh, I neglected to answer your question about energy and gluten. I can't say going g/f helped my energy directly. However, I do think that anything that aggravates your system can effect your energy can deepen fatigue as your body is using extra energy to respond to/cope with the allergen/offender. You just need to try it for a few months and see how you feel. Good luck!

I think it increases my energy because it helps my pain and inflammation. Less pain, more energy.
You might be able to just use the substitute GF products. I'm Italian as well and it was only when I gave up my beloved pasta that I realized how much it was affecting my own chronic gastritis (why I had the EGD) and my brain fog. I tried the substitutes and for me, personally, it's just all grains that are the problem stomach wise, but just gluten that causes actual muscle and joint pain.
Bottom line, you just can't know until you try and trying means really doing it for a good month. It takes time to get it all out of your system. Much longer than a month, actually but if you are going to see some real difference you'd know by then.
My fav pasta subs are spaghetti squash and zucchini. Sometimes I can use chinese style rice sticks as pasta, but just once in a while. They are meant to be fried but if you boil them they come out like vermicelli. I use zucchini cut thin the long way to make lasagna.

re: things that make us tired... I have much more trouble with chemical additives than gluten on that score...specifically any artificial sweetener and the worst, the demon MSG. Evil stuff. I get pissed off whenever I see a (insert popular brand) Ranch dressing ad with kids digging in because that stuff is loaded with MSG (all but the organic one)... rant off...

I know I'm gluten intolerant and stopped eating gluten a year prior to getting tested for allergy or celiac disease. Having not eaten it for so long, can interfere with testing.
Gluten makes me so less energetic, slows down my digestion and caused a lot of bloating. I can rotate it into my diet once a week when I'm doing well without a lot of problems - but when I'm weak, I don't risk it.
What's funny for me, is when I asked to get tested for wheat allergy, my doc tested me for the top 8 and turned out I'm allergic to dairy, soy and eggs. A lot of gluten substitutes have eggs and soy in them, and of course I was using soy instead of dairy because dairy was giving me issues.
Luckily, I seem to tolerate duck and quail eggs ok and goat and sheep dairy products also. I had a bit of trouble digesting them since I had not eaten any egg or dairy products for years so I try to limit how much and how often I eat them. I've become a really good cook due to my food allergies - love making duck egg spinach, mushroom and goat cheese. Chevre Goat cheese cheesecake is also awesome - it seems to work best with recipes that call for using yogurt (also goat).