Scared
nathotte
Posts: 51 Member
Not sure if I'm alone with this feeling or what. Found out I have Fibromyalgia, and gluten's (and dairy) are 2 big aggressors for flare ups. I cut out all glutens and dairy a month and a bit ago and now I'm scared.... Scared that my changing my diet it's going to be too much on my family, scared that I won't be able to maintain this come summer time and we go hiking and camping a lot, scared that as time goes and I try different GF items I'll start missing stuff, just scared for what's ahead. Anyone got any positive advice... Thanks
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I went gluten free cold turkey about three years ago to see if it would have an impact on my fibromyalgia and debilitating migraines. Within days I felt a ton better and that was all the motivation I needed to keep with it. I definitely miss certain foods at times, however it isn't worth how I will feel if I eat it. My family adjusted and my husband is amazing and eats whatever I cook. I was scared at first too but it was definitely a life altering change and I am happy to say that after only two months I was totally medication free (I was taking 7 daily meds).0
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I had to cut out gluten due to FM (I do it strict - celiac style) - I still do pre-digested dairy (cheeses & yogourts only) and don't have a problem with it. The best thing I ever did. I haven't ever taken meds but thanks to my Rheumi and my GP I got started right away after diagnosis to cut out gluten completely. That's probably why I've never taken meds, although I do use Tylenol Extra Strength for really wacky weather days when the barometric pressure swings wildly. I take vitamins & minerals and Red Reishi mushroom extract to help the ATP pathways in the mitochondria (which works for me, but I don't push it on anyone else as we are all different).
- If you still want to go hiking & camping a lot - you WILL DO THIS. Otherwise, you may as well just stay in bed and watch TV. Going GF will enable you to still enjoy those things with your family. Not being serious about this means FM pain and fatigue as well as the IBS etc.
- I am able eat GF while my husband still has his toast & pasta (obviously I have mine separately). Most of the time we both eat the GF pasta as it's easier and not too expensive. But he is not allowed to touch my bread or my breakfast cereal- too pricey, lol. We also have separate condiment jars so mine don't get contaminated. We use the same toaster, but I have special El Peto pockets to put my bread in to use in the toaster.
- http://www.elpeto.com/
- Hang in there, it gets waaaay better!0 -
Thanks for the awesome support. Was much needed as it's been a flare up kinda day. Hadn't had a flare up in about a month, so since I cut out glutens and dairy. I'm pretty lucky too as most of the foods that I make the boyfriend will also eat and enjoy, he just doesn't like the GF pasta so I make him his own. Only meds I have are nucynta for pain, major flare up days that I don't need to drive anywhere so couldn't take them today, and some muscle relaxants for days I know I pushed myself too hard. Thanks again for the support on this emotional roller coaster and painful day.0
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Hang in there! It will get easier and you will see a difference (hopefully!).0
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I do see a difference going GF. Hadn't had a flare up in a while.0
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I found that sweating my butt off at the gym helps as well0
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Just a note on anticholinergics (methocarbamol is in this group of drugs at a high risk rate with even occasional use): New studies are showing a link between these drugs and dementia or mild cognitive impairment.
Quote from Medscape: (May 22 2013)
"The association between AC medication use and cognition appears to depend not only on the length of exposure but also on the strength of the medication burden. The study showed that the risk for cognitive impairment was increased by 50% in adults receiving at least 3 mild ACs for more than 90 days and by 100% in those receiving 1 or more severe ACs for more than 60 days."
Quote from Medscape: (Jan 27 2015)
"Dr Campbell, who has also authored some studies showing similar findings, explained that the current study had the longest record of medication history. This history was measured from dispensing records and so provided "very credible data," which is "probably the best that can be done in an observational study."
"Even low doses of the drugs included in this study increased the risk of dementia when taken long term. It looks as though it could be a cumulative effect. The more you use the higher your risk," he noted.
"We have several studies now all suggesting that these anticholinergic medications are associated with cognitive problems. But while many geriatricians and psychiatrists may be aware of these data, these medicines are often prescribed by family doctors who may not be aware of this issue. Publishing this study in JAMA Internal Medicine is a good idea as it will reach more family doctors that way," he said.
Dr Campbell added: "Maybe the best group to try to make aware of this issue is the patients themselves. Dementia is a much-feared condition. It would definitely be a priority for me not to take any medication that might increase my risk of this condition."
So in the case of fibromyalgia this could add to the 'brain fog' issue short term, as well as causing permanent damage and plaques in the brain. Probably safest to go without the muscle relaxants as much as possible, using other modalities to relieve the tension such as massage, heat, etc.
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Thanks for that info. I don't use the muscle relaxants much at all. In fact I had 40 prescribed in Dec and still have most of them.0
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Glad to hear it @nathotte. I've tried to cut my use as well since I learned this. My mom is in early stages dementia right now and so I want to be as careful as possible in case I have any 'tendencies' toward that too. She has taken a few anticholinergics over the years that cannot be dropped or switched out for other medical reasons.0
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I've been GF since January and just started the FodMAP diet for tummy issues, but everyone has been amazing and supportive. My SIL is talking with the caterers for her wedding in just a couple months to see if they can do something for me, my friends all try whatever I bring to share. As far as camping- it would be so easy to do gf/df. I just did an all night relay for life and although I did make far too many gf cup cakes and muffins (which were too freaking good!), I was also able to bring healthier snacks and meals that didn't make me sick and I wasn't even a little tempted by the delivered pizza or anything else they ate. Honestly it gets to the point where you don't want to touch any of it because it hurts too much and everyone is so supportive so it gets a lot easier.
As far as camping season, what do you usually eat? My family used to have eggs, pancakes, sandwiches, burgers, etc. on camping trips. There are gf alternatives to all of that or you can go for just meat, veg, and fruit-gf sausages (which seem to be easier and easier to find), eggs and bacon, salads, veggie sticks and dip (baba ganouch and hummus are my favorites). Worst case scenario, you pack a little extra- a stove, dishes, and good cooler. It may seem a little harder, but it gets easier. Seriously don't let anything hold you back from doing what you love to do.0 -
Camping season I do a lot of one pot meals (we have a tiny stove - we are still in a tent with minimal car-camping amenities and often stay in Forest Recreation sites (just a pit toilet & picnic table & fire ring) I like chili, Indian foods with meat & veg in a curry, Asian stirfry with VH or San-J sauces - both certified GF. Breakfast for us is usually hot GF oats, or cold Nature's Path GF cereal and almond milk, or scrambled eggs with Pamelas's GF baking mix pancakes and bacon. Lunch while hiking is usually raw sturdy veggies, cheese chunks, Grimm's pepperoni, a piece of sturdy fruit, and a GF protein bar for mid afternoon snack.
- Here's to camping season, although summer is a busy time for both our jobs, so we don't usually get to camp until early Sept.0 -
I am both gf and df, before this drastic lifestyle change I would have struggled to go camping / hiking etc due to frequent toilet trips and arthritis flareups. In the long term you have to remember that feeling good tastes much better than bread!!! It is all about forward planning - if you go to a bbq, take your own bread, when you go camping take plenty of rice, always have dried fruit and nuts in your bag for emergency hunger pangs so you don't get tempted. It does get easier the more you practice and being able to join in with life again is amazing
- Have fun.0 -
For camping we used to bring thermos of chowders and stuff like that. We do hike in camping so coolers are pretty much out of the deal. We started to dehydrate chowders and other soups, light and very filling. I'm also noticing that I have less and less want for glutens and dairy. I am so looking forward to camping/hiking season. Planning a day hike in couple days and really looking forward to getting out of the city. Every one is being really supportive of my new needs including when I went for a dinner at some friends place and she had made me a special "pie". So basically she made more pie filling and put it in a personal sized dish. And she made me my own potatoes since she was making cheese ones and instead of gravy she made a sweet sauce that I could have.0
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That's fantastic, it's good that you're nothing having to deal with unsupportive family, and friends.0
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It gets easier over time. You will get better at your food choices, but I will be honest, it is a pain in the butt. I went camping last year to Yosemite, I took protein bars (quest nutrition are amazing) apples, gluten free bread (Udi's) for sandwiches, we had steak and potatoes for breakfast (precooked and reheated each morning), hamburgers, (ate mine bun free) and misc snacks. Oh and a LOT of gluten free beef Jerky I made before we left. The way I look at it, I lose body function and get brain fog/GI issues when I eat gluten and I'm very fond of being able to function well. I've been fairly lucky, the men I've dated and my close friends have all been very supportive. OH - and there are several gluten free pasta's you can get that you would never know were gluten free. They are corn based. let me know if you want me to get name brands for you. Also if you are on the west coast, Mission makes an amazing gluten free tortilla that isn't a corn tortilla. super flexible and very tasty. better warmed for 30 seconds in a microwave.
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What I've learned: Being healthy is most important. If the gluten and dairy causes harm to your body, it's not worth it.
It is a little saddening at first to "let go" of the foods you're familiar with, but when you can make them yourself with substitutions or get used to it, you WON'T miss the pain!
I eat gluten-free so I'll only speak for that part. It will get easier with time, you'll settle into a routine and learn to bring your own food to events. Not ALL the food, mind you, but when I go on a trip I always tote around gluten-free bread, a banana, and usually some bars. That way, if we have to stop anywhere for fast food I just put the makings of the sandwich on my own bread and eat that. I can still have fries, too. And as for camping, bring your own substitutions. S'mores? GF graham crackers. Hot dogs are almost always GF, and then there's always whole fruits to bring, eggs (hardboiled too), GF jerky, nuts, or bake/make your own treats ahead of time and bring those.
Also I agree with Cindure, the corn-based pastas are really good and you'd never know they were GF.
It's a little overwhelming at first to think about making such a big change, but soon it will just be second-nature to you. (: And I'm sure you'll love how great you feel without the diet-induced pain! You can do it!0 -
Just a reminder about fries... if you are in a restaurant that has battered anything, fries go in the same oil and people who are very sensitive to gluten or have celiac disease can get in trouble without realizing it. Also some fries are coated with a type of breading that makes them crispier - check with the restaurant. I believe New York Fries is celiac friendly because they do not have other foods on offer that go into the oil. Just hearsay though, so it's best to check it out for yourself first. 0
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If you're in the states, http://munchyy.com/226-gluten-free-restaurant-menus-you-absolutley-must-know/ is a great list of gluten free resturaunt menus0
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