I have mentioned a time or two before that I had chronic pain over the summer. I was diagnosed with rheumatoid arthritis in August, but the (malaria) medicine my doctor prescribed for it hasn't helped.
At all.
I also started taking prednisone in August, and that has worked wonders. It's practically a miracle drug, erasing the pain from all of my joints within a few weeks of my first pill.
I can't take prednisone for ever.
I would, you understand. The side effects (like having trouble falling asleep and being hungry) were trivial for me because I had no pain.
But my doctor wanted me to stop taking it in October. I tapered my dose as directed.
Prednisone was a temporary solution. I knew that when I started taking it. My pain came back within three days, just like I'd never started taking it in the first place.
I made the executive decision to start taking it again to prolong my life without searing pain. My rheumatologist was less than thrilled, and she told me so at my next appointment.
She said I had to for real stop taking the prednisone by December 1.
I almost followed her instructions, having fully weaned myself off of it by December 4. I'm writing this on December 9, and my pain is back.
I feel like my body has aged sixty years in the last five days.
I can't twist a bottle lid because my fingers and wrists are weak and useless.
I can't stand up without creaking. All my joints ache from my jaw to my toes, and many of my muscles are stiff and sore.
Pain wakes me up at night. I can't sleep because my fingers and hands are simultaneously burning with fire and tingly and numb. It rages until I get up and walk around. Somehow, walking around makes it ease, and I can go back to bed.
I go back to the doctor in eight days, and she will probably prescribe a chemotherapy drug that has helped some rheumatoid arthritis patients.
Eight days is a long time.
Chemo drugs have crazy side effects. Are they meant to be taken in the long-term? This concerns me greatly.
But I can't live with this pain in the long-term, either.
I was talking with a good friend at church this morning, and I told her about going off prednisone.
She empathized, explaining that she had the same symptoms last year - right down to waking up at night with the burning pain and tingling. She understood it all.
The malaria medicine didn't help her, either. Before starting the chemo drug, she saw a doctor specializing in alternative therapies. This new doctor told her that her symptoms made him suspect a gluten sensitivity and told her to go gluten-free.
A year later, she has no symptoms whatsoever, unless she eats gluten. When she does, the pain comes back within a day.
I know that my case may not be the same as her case. I have a very strong family history of rheumatoid arthritis, so I may in fact need the chemo drug.
But if there's a chance that a gluten-free diet will fix all this joint pain, I'm going to go gluten-free.
I'm not at all happy about avoiding gluten (pasta! pizza! crescent rolls! pie! cookies!), but I'm willing to try. The end of my pain would be worth any food sacrifice in the world.
I have trouble picturing my life and my diet without some of my favorite foods. I found these resources:
- Going Gluten Free at udisglutenfree.com
- The Gluten-Free Diet 101Â at celiac.com
- Are You New to Gluten Free? at glutenfreegirl.com
- Gluten Free Diet (includes lists of safe and unsafe foods) at mayoclinic.com
- Getting Started at glutenfreeliving.com
- Unsafe Foods for Gluten-Free Diets at celiac.com
- Eat What You Want By Changing a Few Ingredients at celiac.com
I wanted you to know why I've made this sudden and enormous change in my diet. I have a recipe coming up that involves a sandwich, but after that, we'll be eating gluten-free.
If my pain goes away in the next month or two, the change will be permanent.
Are you gluten-free? Will you share your experience in the comments?
karen says
Hey you.....welcome to the pain world ...no fun....and also the gluten free world! You will find that you can eat everything just have to adjust what it is made from. There are so many resources out there...it is unbelievable. Let me know if you need any more websites. Honestly the hardest part is the beginning when you clean your cupboards and buy your first groceries but then you will figure out it isn't very hard because there is so much available and so many places to get recipes. Even meal planners like onceamonth mom and many others have added gluten free recipes and plans. Also you will find that a ton op people in our Allume faith circle are gluten free and have tons of recipes too!!!~! Just let me know how I can help. It does help my fibro a lot!!! Will be praying for you!!
Tara Ziegmont says
I'm just seeing the tip of the iceberg in terms of recipes and gluten-free alternatives. Thanks for all of the tips!
Erica says
The Nourishing Home: http://thenourishinghome.com/about/ has a lot of gluten free recipes that are easily "doable."
Tara Ziegmont says
Thanks!
Michelle says
I am truly sad to hear you are going through this Tara! My heart goes out to you!! I hope the gluten free diet helps, let us know if you need anything and keep us updated on your progress! I'll keep you in my prayers!
XOXO,
Michelle
Tara Ziegmont says
Thanks Michelle! I'm keeping a diary to share later on.
Kim Hopkins says
I am thinking of going gluten-free too. I have fibromyalgia, and I have 2 kids on the Autism spectrum. I've heard it could help all three of us! Don't think for a minute though that you cannot have pasta, pizza, cookies and pie! Have you seen some of the awesome recipes on pinterest??!! One site I found called gluten-free on a shoestring is all about Christmas cookie posts right now!! Good luck in your change, and please look around for yummy recipes. Chances are you will stick with it if you don't feel deprived! Hugs!!
Tara Ziegmont says
Christmas cookies?! I'll be googling that blog in about five seconds. Thanks for the tip!
Adrienne says
Yes - it has helped me. But I do think sugar free is crucial. Best wishes.
Tara Ziegmont says
It sounds like you went gluten free and sugar free at the same time?
Adrienne says
Sort of. My son went GF due to autism. Then I got really ill and had to get off the sugar and gluten for a candida issue but struggled w/ being faithful - mainly w/ the sugar. But I'm about 100% off both now. I am looking at a cookbook that says you can do real sourdough to take the gluten out of bread but I don't own it yet.
Tara Ziegmont says
I'm afraid of the withdrawal I went through the last time I swore off sugar. I'm thinking I'll cut sugar back gradually over a couple of weeks, after I'm more comfortable with being gluten-free.
Adrienne says
I think that could be a good idea. What happened?
Tara Ziegmont says
It was AWFUL. I had the worst migraine of my entire life (and I've had thousands of them). I was nauseous and couldn't eat much. I couldn't think, had no energy, couldn't stand any noise. I couldn't go to work. I felt like I was going to die. It lasted for four days.
Adrienne says
Wow. Are those symptoms you have struggled w/ otherwise? It could be candida die off. I have tons of GF and SF stuff on my blog if you are interested. Happy to help as I can.
Tara Ziegmont says
I had migraines a few times a week every week until I was thirty. Around my thirtieth birthday, they went away and haven't come back. The majority of the symptoms went along with a really bad migraine, but it was just so severe. I went off caffeine and sugar cold turkey at the same time, so it could be a combination of the two.
Carol Anne says
I'll be interested to see how things progress and hope you see quick results. I have read some other articles linking gluten to auto-immune issues. My son has asthma, another a/i disorder. Cessation of dairy almost completely cured his chronic asthmatic bronchitis and cystic acne. I have Sjogren's Syndrome. Between our dairy free experience and what I'm reading about gluten and a/i issues, I am thinking of jumping on the bandwagon with you.
Tara Ziegmont says
Last night was the first night in a week that the pain in my hands didn't wake me up four or five times through the night. Is it a coincidence? Is it because I've been taking Aleve around the clock for 4 days? Is it gluten? I don't know how to tell, but I'm going to stay gluten free for at least 2 months to see what happens.
Jessica Cohen says
As you know I have a son who is gluten-free and now my diet is mostly gluten-free too. Gluten is the glue that makes wheat stick together, so imagine what it is doing inside of your body? It's really kind of gross to think about.
Wishing you so much luck on this new journey. Reach out if you need any food suggestions.
Tara Ziegmont says
I'm pretty sure we're poisoning ourselves with food. Think about caffeine and sugar, for example. Have you ever gone through withdrawal of either one? It's nasty. I've been waiting for a similar reaction to eliminating gluten, but I haven't had one.
I'll take whatever advice you have. I've found a lot of websites relating to gluten free recipes, but very little advice on making the switch.
Stephanie C. says
I'm so sorry to hear you are going through this Tara! I just want to share another blogging mom whose blog focuses on food. She has a gluten/allergy free home and has a LOT of gluten free recipes and is always posting more. She even has a gluten free pizza crust! She is also going through a lot of her most popular regular recipes and turning them gluten free. I do hope going gluten free helps the pain go away so you don't have to take the drugs.
Tara Ziegmont says
Who is she? What's her blog?
Stephanie C. says
I'm so sorry!! I can't believe I forgot to type the web address. My brain must be fried from finals. Her name is Lynn and her blog is http://www.lynnskitchenadventures.com
Tara Ziegmont says
I love Lynn's Kitchen Adventures! I didn't remember that she's gluten free. It will be awesome to rediscover her site. Thanks!
Amy says
My son and I are both gluten free and have been for over a year now. It was really hard at first, but now it's just life as usual. It cleared our eczema right up and we no longer get canker sores (unless we choose to eat gluten, of course). They make so many great gluten free pastas, breads, etc. that you won't even feel like you're giving anything up. Let me know if I can offer any suggestions!
Tara Ziegmont says
Yes, do! I'll take whatever suggestions you have.
Amy says
The easiest way to do it is by eating as many whole unprocessed foods as possible. This will alleviate the pain of examining all the labels. When buying processed foods, go for as few ingredients as possible (again, this will save you the time & hassle of reading a huge list of ingredients).
Some tried and true products we love are Tinkyada brown rice pastas (only 2 ingredients (rice & water) and perfect texture), Udi's Multi-Grain Gluten Free Sandwich Bread, Bob's Red Mill gluten free flours, Nut-thins, Enjoy Life Fruit & Seed Trail Mix.
As I saw before, focus on what you CAN have and you'll find there are tons of things you can still eat. Mostly we stick to fruits, veggies, cheese, raisins, and meats. Also, it's only my son and I that are sensitive to gluten, but I refuse to make 2 dinners each day, so by default, my husband and daughter have gone mostly gluten free. They don't mind one bit (and I don't think they even noticed as I did this pretty gradually to use up all the gluten products we had had in the house).
Good luck! I have heard so many success stories about this type of elimination diet helping with all sorts of chronic things. I'd be willing to bet you'll find some other things it helps with, too.
Danielle Fishel says
I am gluten free and have been for awhile. I just recently found a gluten free, vegan bakery in camp hill called Betsy's bakery. Their bread is amazing! Also, wegmans has an large GF section. They make their own pasta and its not bad but more importantly its reasonably priced. Spaghetti squash is a great alternative for pasta also. It's easy when you get the hang of it, sorta, but I also have a love affair with pizza but I pay for it every time I cave!
Tara Ziegmont says
Thanks for taking the time to comment, Danielle! I wondered about the Wegman's and the Super Giant in Camp Hill. Almost anything would be better than the GF spaghetti we got at the Walmart. It was awful.
We have a gluten-free pizza recipe, but it comes out a lot like cake. Joe is still working on it; it's not blog-worthy yet.
We also love spaghetti squash! We buy a dozen or so every fall from Strite's in Harrisburg. Our favorite recipe is this one - https://feelslikehomeblog.com/baked-spaghetti-squash-casserole/