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Gluten free? 
29th-Jan-2014 10:27 am
bit, avatar, silly
Forgive me if this topic has been brought up before, I was wondering how many people on here have tried the gluten-free diet? And if so--did it or does it work for you?

I tried it a couple of years ago and it didn't really work, but I think that is because I wasn't vigilant enough and I replaced too many wheat carbs with their sugary/over-processed substitutes. If I try it again this time, I will try to watch/limit sugary starches and increase vegetable/protein intakes (which is always good for health!)

What are your thoughts?

Gluten-free is it a fad or a legitimate treatment for fibromyalgia?
29th-Jan-2014 04:11 pm (UTC)
I've tried it, though not so much for me. My husband's father and grandmother are both coeliac and he had some symptoms so we tried it just to see. It did nothing for either of us and it was such a pain in the butt that we gave up. That said, I'm almost desperate enough right now to give it another go, because nothing else is doing anything for me right now.
31st-Jan-2014 06:06 pm (UTC)
I'm sorry nothing is working right now. Sometimes it is just like that! I hate dealing with this mess.
1st-Feb-2014 11:30 am (UTC)
Ah, it's okay. I was getting a bit bummed, but I'm sure there's an answer out there if I just keep searching. It's a nightmare, sometimes, but I try most days to keep a more positive attitude. I hope things get better for you too!
29th-Jan-2014 04:24 pm (UTC)
I have been gluten free for over a year now, and am finally really settling into the diet. For the first few months, I swear I ate potato chips at every meal because I was rushed and they were easy. Anyway, my situation:

I have had fibromyalgia for years, mostly because that's the only diagnosis they can come up with after exhausting everything else (two rounds of lyme, etc. etc.). I am also pre-diabetic and completely diet controlled, so my carb intake is limited to 22-28g carb per meal, with no more than 5g (preferably less) coming from sugar. I decided to try going gluten free for a few months to see if it would help with inflammation, and thus pain.

The short answer is: it didn't help with the pain. I still have just as many chronic pain and depression issues as I did before starting, and some are possibly worse. HOWEVER. I had some really awful stomach issues that were attributed to fibromyalgia since I'd been tested for celiac and wheat/gluten allergies and came back negative on all counts. Going gluten free cleared up those issues for me. If you'll forgive my bluntness, I no longer swing wildly from stopped up to the complete opposite. I can now tell when I get gluten by accident, because I will be miserable within a couple of hours.

So that part of my symptoms was cleared up. The fuzzy-headedness, the exhaustion, the sleep issues... well, the sleep issues MIGHT be better? Or it might be me finding a better sleep schedule? I'm not sure on that one... I am sleeping better more of the time than I used to.

So anyway, that's my experience with things.

The thing is, if you go GF, you kind of have to do it wholeheartedly. There are some great blogs out there, and you will go insane wishing for bread (or maybe that's just me). You will eat stupid crackers and GF pretzels and a million bad foods because they are convenient. You will go nuts trying to find things that don't spike your sugars because that's bad for fibro too. But depending on your body, it may be worth it. If all else fails, do your damnedest for a few months, make your decision then whether to stick with it or go back.
31st-Jan-2014 06:00 pm (UTC)
Thanks for sharing your experience!
29th-Jan-2014 05:47 pm (UTC)
It didn't do anything for me, and i found it too difficult to maintain given other dietary restrictions I have to adhere to. I don't think there is anything wrong with limiting carbs from wheat-based products, because most of those products are heavily processed and not all that great for you anyway. If it works for you, go for it.
31st-Jan-2014 06:00 pm (UTC)
It sure is a pain, that's for sure.
(Deleted comment)
31st-Jan-2014 05:59 pm (UTC)
Thank you for your insight!
29th-Jan-2014 06:20 pm (UTC)
I tried it briefly. It didn't help with my symptoms and there were times I broke down crying because I couldn't find anything to eat that sounded remotely appealing. What GF food I did find was also way out of my budget, so there's no way I could maintain that diet on a regular basis. I think that was the one and only time I've ever been relieved when a treatment didn't work.

What has worked for me is going low-carb, although that's also very restrictive and difficult to maintain. But when I manage to stick to it I do notice a difference in my symptoms.
31st-Jan-2014 05:58 pm (UTC)
Low carb has been good for me in the past. As I mentioned in another comment, I think sugar (or things that turn to sugar easily in my blood) is usually my biggest dietary villain.
29th-Jan-2014 07:20 pm (UTC)
I went strictly gluten-free three years ago, and my pain is pretty much gone save for the occasional flare. If I have a single cracker I get arthritic pain within the hour. Before I was strict about the diet, I cheated a bit here and there and didn't feel any better. It's really got to be all or nothing. I'd give it a month of being strictly gluten free - it can take awhile before you notice benefits, if gluten is the culprit.
31st-Jan-2014 05:54 pm (UTC)
That's amazing. Thanks for your insight!
29th-Jan-2014 09:17 pm (UTC)
I was told shortly after I was dianosed that I had a bit of a gluten sensitivity and it would be a good thing if I went gluten-free. For the most part I've done so.

Except for occasional bread and tortillas, because the gf options taste like notebook paper to me. I'm not sure if it's made a difference or not. Having an illness with so many possible contributing factors is maddening, no?
31st-Jan-2014 05:54 pm (UTC)
Do you get sick if you indulge in a little bit of gluten every now and then?
31st-Jan-2014 08:09 pm (UTC)
Not that I've noticed. But it could be the pain or the foggy brain is distracting me ;)
30th-Jan-2014 12:19 am (UTC)
I found what has helped me most was getting good thyroid treatment (for low thyroid doing more indepth testing with a person who really knew their stuff about thyroid issues) and going gluten free has given me my energy back.

I went into it incredibly strict from the getgo and i'm glad I did. I cleaned the whole kitchen even though it nearly killed me just doing that and washing the cabinets and rewashing everything through the dishwasher and boxing up a lot of food and replacing kitchen implements etc XD but seriously within 5 days i felt better and now I feel like a different person.

I still have pain but nowhere near as much and I feel well enough to want to come off some of my muscle relaxers and gabapentine etc!

So I think it can be a godsend if it's part of what's wrong with you and you adhere strictly. Being vegetarian too it was hardest with the soy sauce and stuff like that that make it really difficult to eat out (so I don't eat out that often but I wasn't before). I really enjoy cooking and was already eating as organic and healthy as i could afford and cooking most stuff from scratch so it wasn't that huge of a deal cooking wise as it's just new challenge but the eating out is hard hard hard (and family is hard too).

good luck finding something that helps!
31st-Jan-2014 05:52 pm (UTC)
Thanks for the info! I am glad it has helped you. My husband would never go GF, so I have a bit of a battle on my hands from the get-go (he's a skinny frenchman and practically lives off of bread and cheese).
30th-Jan-2014 12:41 am (UTC)
I've decided to give gluten-free a go as well - I can't say there's a difference as I haven't been on it long enough. I do find it hard to stick to it, it's a very tedious lifestyle :x But I'm working on my own flour mixtures, etc because I'm not one to just buy a bunch of stuff that has added crap to it.

Good luck if you end up trying it out!
31st-Jan-2014 05:46 pm (UTC)
Thanks. Keep me posted and I hope you get to feeling better soon!
30th-Jan-2014 02:09 am (UTC)
Gluten free and low carb for years now and both has helped my fibromyalgia tremendously. The key is to not replace gluten products with almost-as-bad processed foods.

I follow the paleo diet mostly (though I did Atkins for many years, it's pretty similar).

31st-Jan-2014 05:46 pm (UTC)
I felt great when I was doing low carb (my own version) and maybe that is more of the key for me than gluten free. It's not as hard to keep up and it does reduce a lot of wheat in the diet.
30th-Jan-2014 02:47 am (UTC)
Fibro aside, I think a lot more people are sensitive to gluten than realize it. I've known lots of people who say they've felt better when they've cut out gluten. Granted, these are people that just cut down on gluten, and didn't necessarily go GF.

I've found that I'm fine with small amounts of gluten, but a small amount of wheat (or dairy/tomatoes/potatoes) will increase my pain for 3-4 days.

Another thought about GF living: nightshades, like potato/tomatoes/eggplant, frequently cause inflammation in people who are prone to it. Guess what 98% of gluten free products are made out of? It's usually a combination of rice and potato with a handful of other things.

31st-Jan-2014 05:45 pm (UTC)
Yes, I've heard about nightshades being a possible source of inflammation, but I haven't done a whole lot of research on it. For me, my guess is that sugar (or things that easily covert to sugar in my blood) is the biggest culprit.
31st-Jan-2014 05:37 pm (UTC)
Thanks everyone for your feedback. This has been really helpful, but I still haven't decided which route I should take.
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