Part 1: Gluten Free With Fibromyalgia Series
About a year ago, I started to really worry about some gastrointestinal symptoms that had been getting steadily worse for about 4-5 months. I also had intense fatigue, couldn't stay awake, and couldn't move when I woke up in the morning.
I know for some of us with fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS), many of those symptoms are par for the course. For me, however, they were either new or far worse than they'd ever been (especially since I don't have ME/CFS, "just" FMS.) Meanwhile, the FMS symptoms that used to be my worst were receding.
Then I noticed these symptoms were generally worse not long after a meal. I suspected gluten, and when I cut it out of my diet for a few days I felt better. I got tested for Celiac disease -- a disorder that causes your immune system to attack your intestines while it's they're digesting wheat and other gluten-containing foods. All the tests were negative, so I was diagnosed with gluten intolerance. Nobody really knows why, but gluten does bad things to my body and I feel awful when I eat it. I even get symptoms consistent with narcolepsy and learned that a lot of people out there have had a similar experience, even though there's no scientific evidence to confirm the 2 conditions are connected.
I was taken off guard by my emotional reaction to the diagnosis. It's not fatal or degenerative, it's just a dietary change, right? Maybe, but it's been the most difficult dietary change I've ever made. I didn't want to accept it, I was angry and frustrated; after awhile, I realized I was in a grieving process and I'd just have to let that run its course.
The first thing I did was go off of my low-calorie diet and postpone my weight-loss goals. I just couldn't restrict what I was allowed to eat to that extent. I couldn't handle thinking that hard about everything I put into my mouth. For awhile, it was like I had to eat the ice creams and candies and other goodies that were gluten free, to reassure myself emotionally that I didn't have to give up all pleasurable foods.
This was a major upset to my lifestyle. Before FMS, I didn't love cooking but it didn't really bother me, either. Since FMS hit, cooking has stressed me out completely and for awhile I couldn't even stand the thought of doing something new or complicated (meaning more than about 3 steps.) You really can't eat gluten free without cooking, so I've had to push myself to not just cook more often, but cook differently and experiment a little.
I think everyone with FMS or ME/CFS has nightmare experiences in the grocery store, so you can imagine what I went through trying to read dozens of labels with 2 bored kids in the cart, trying to remember all the places gluten can "hide" -- its in a lot of places, in a lot of different forms.
Now I'm to the point where I know what I can and can't eat, I know what to buy and how to cook it, and it's getting comfortable. As I recently wrote here, I'm getting back into counting calories and trying to lose weight again. It took about 7 months to get to the point that I could, but by then it was the holiday season, so I made the change on Jan. 1. So far, I'm doing OK with it.
Something I don't think we realize until we have to make a major change is how closely our diets are tied to our lifestyle. I'd come to rely on convenience foods and couldn't anymore; I've always eaten out too much, and now I can't eat a thing at some of my favorite places. It's hard. It takes time, and it takes more energy than we sometimes have, but in the end it is possible to make this kind of change and adjust to it, so that eating once again becomes just part of your daily routine.
I don't know how I would have learned everything I needed to know about gluten without the Celiac disease site here at About.com, which is run by a fabulous woman named Nancy Lapid. Here are some great articles from her:
I'll be writing more about my gluten-free experience, including tips for shopping, cooking, eating out and counting calories. In the meantime, I'd love to hear about any dietary changes you've had to make, what it was like for you, and how you've managed. Leave your comments below!
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- Part 2: GF Grocery Shopping
- Part 3: Challenges of GF Cooking
- Part 4: GF Foods I Like
- Part 5: GF Eating Out
- Part 6: GF Calorie Counting
Photo © Jodie Coston/Getty Images
I’ve been on a few special diets to see if they’d help this or that symptom. The worst was the interstitial cystitis diet for 3 months. Unfortunately (or maybe fortunately), it didn’t help much if any. And while I was on it I felt like most of the things I had left that I enjoyed in life – chocolate, tea, coffee, FLAVOR – were being denied to me. It was VERY depressing.
I also tried different elimination diets for IBS-D, which has been a very persistent and sometimes debilitating condition I’ve had since childhood. Nothing seemed to work and doctors didn’t even seem that supportive of me trying. They’d say, “Take this med here for 3 months. And then if it doesn’t work, maybe you should try that.” And the side effects of the meds would be awful or it wouldn’t do anything or it would stop me up for a week – but not get rid of the cramps or bloating, of course. Then I’d go back and they’d just give me some other med to try.
Then I tried a vegan diet for unrelated reasons. My IBS symptoms disappeared within a week. Gone. It was unexpected but a very welcome surprise. And I’ve tried eliminating lactose before, so it’s more than that. Plus, it’s definitely helped by CFS/FMS a bit. It’s not like, “Alleluia! I’m cured!”, but I seem to do a little better overall and I recover from physical activity quicker, which lets me do more. I even had my first cold in years, which may seem like a bad thing, but I think my immune system was so low before that it could never muster a sufficiently noticeable attack.
Now, I’m not saying that everyone should be vegan – though there are a lot of other health benefits, environmental benefits, even cost benefits. But, seeing as it’s not something I would have tried for this (didn’t even know people could be intolerant to animal products), I highly recommend that people try cutting out animal products as part of an elimination diet. And of all the diets I’ve been on, I feel the best mentally about this. It helps that I seem to have fewer cravings in general while on it.
That said, I think I have an intolerance to alliums (onions, garlic, chives, etc.). O.k., I bloat up like I’m 9 months pregnant when I eat a raw onion – which is one of my favorite snacks. Probably should stay away from them completely, but I’m just not there yet.
Good thoughts and info.
To all you out there who are new to ‘major dietary changes’…… Yes, it’s overwhelming and confusing and frustrating at first….. but over time it does get easier and becomes second nature.
Do the best you can. Yep, you’ll make mistakes, but that’s okay – don’t be hard on yourself.
I’m allergic to ALL the common grains, including corn and potato AND rice. Fun, fun!
I just found out yesterday that I’m allergic to gluten, milk, soy and eggs. I knew about the first three…but eggs? My favorite breakfast was gluten-free waffle and egg sandwich. I’m bummed!
Yes, the gluten thing takes some getting used to, but check out this blog: http://glutenfreegirl.blogspot.com she makes being gluten-free a joyful thing of beauty. She’s also written a book that talks about coming to terms with GF. I found it enjoyable and educational.
Like you, I was tested for Celiac disease, but long before I was diagnosed with fibromyalgia. Also like you, I did not test positive for Celiac disease but did show some antibodies consistent with a gluten sensitivity. I used to drive myself insane with reading labels, staying away from condiments with any wheat, gluten or related offenders. It all seemed to make a HUGE difference in the amount of pain in my body and with my GI issues. So, as depressing, upsetting and stressful as it was at first, I became completely gluten-free.
Once I was diagnosed with fibromyalgia (2.5 years ago) and then, eventually, started to gain some control of it (as opposed to it controlling me!), I started experimenting with small amounts of gluten-containing foods, being careful to not load-up too much within a short time-frame. I might have a sourdough roll from the Italian market, then a week or so later, try something else. I know everyone is different, but that being said, there is hope that you don’t have to give up your favorite things completely.
I also have a milk allergy AND lactose intolerance, and have a few other food sensitivities. Sometimes I still struggle with finding the “balance” of how much I can have before I suffer negative consequences. The holidays were tricky, but far more enjoyable this year knowing that I could partake a little.
Great article! How long did it take for you to notice results once you began cutting out gluten? My main concern is that I still have a lot of pain from fibro – did you see improvements in any of your fibro symptoms? Also, did you visit an allergist to determine that you had a gluten intolerance? I’m considering going to see one if it has been beneficial to other FM/CFS people.
It’s tough having fibro and all the symptoms of irritable bowel syndrome too. Just wrote a blog post about my own challenges with fibro, IBS, and nausea.
Your article has really given me the impetus to construct a gluten-free regiment for myself. I’ll be following your progress. Good luck!
Guide Response: I saw a difference in some gluten-related symptoms right away (narcolepsy-like symptoms). The GI symptoms started improving after a few days, but they took several weeks to clear up completely. It did also help my FMS symptoms some. It’s important to note that food sensitivities/intolerances aren’t the same as allergies. Allergies cause things like breathing problems, sinus congestion and hives. An intolerance can cause a lot of different symptoms, but the most common are GI problems. A GI specialist can help you figure out what foods are bothering you. ~Adrienne
I agree that a vegan diet is the best thing you can do for yourself and our earth. I also beleived that this is the way to prevent illness. I am an educated vegan.
I read all the symptons of Celiac disease….I have Fibro, and have been losing weight for over a year now…I am not dieting and I eat whatever I want, how much I want.
At 30 years old, this is not normal.
Also have IBS, etc, etc, etc…….now I am starting to wonder about this Celiac thing…..I wish I could find a knowledgeable doctor in my area.
For me, everything is tied up with my thyroid as well. All on my own two months ago, I discovered that I felt lousy and bloated after eating bread. Felt lousy (but not bloated) after refined sugar. Eliminated those two things, and I do feel better. Had some blood tests and found out my fasting insulin is quite high. The doctor told me to eliminate all refined carbs. It was nice to tell her that I already had. I have lost some weight, which is also very nice. Every once in a while I want something sweet, but generally I don’t miss the sugar or bread at all. It makes fixing lunches for work challenging, but crackers and sandwich fillings work well. It is all experimentation and listening to your body. Lisa B, you might want to have your thyroid checked. Weight loss is a symptom of hyperthyroidism.
Be as well as you can!
It can certainly be overwhelming. I had FMS first, then diabetes type II, and then discovered the gluten intolerance. Eating gluten free eliminated almost all of the symptoms I thought were IBS, which is nice. Wish I ever lost any weight! Somehow I have managed to keep my blood sugar under control and eat gluten free without ever losing any weight……..sigh……. It is hard sometimes not to feel like you had to give up all your favorite foods.
And do others feel that it is really hard to cook meals with your family? I can’t afford to cook gluten free for everyone, so then you make two types of meals. It is harder to eat out although I can usually figure out something for that — assuming I ever feel good enough to go out.
Oh well, enough complaining — my immediate family are really supportive and it is so nice not to have the gut wrenching, cramping all the time. You would never know when that would hit.
I stopped eating gluten about 1 1/2 ago, and at first I was confused, angry, sad, and probably many other things. I test positive for the antibodies for Celiac disease, so instead of doing more test to confirm, just how bad my Celiac disease was, I just quit eating gluten.
My doctor said that it would take a month before my body would start to heal, so I tested after a month, to eat just a little gluten. I was in bed for a day, with my stomach hurting sooo bad. I think it is really important to understand what is Celiac disease and just what it does to your body. After a year, I still miss my gluten, but I know I should not touch it. That is just something you have to come to terms with.
Thank you for the post, it really hit home.
I have had bouts of truly amazing fatigue for years. Last year I decided to go gluten free after reading some info about it. Blood tests by my doc were negative, but I went ahead and cut out the gluten anyway.
Make things a million times easier for yourself by getting a rice cooker, and learn to make delicious, healthy brown rice.
Major symptoms for me: blisters around my mouth. My daughter (aged 20) gets the same thing. I had always suffered with ‘cold sores’ – but no more. In fact, when painful blisters start erupting around my mouth, I now know that I have accidentally been exposed to gluten.
Other symptoms: itchy rash on back of scalp, back of neck, low back, and the winner of all time – hemorrhoids. Had them since I was 14, and could never determine why.
Not many sources ever even mention that unpleasant condition.
Guide Response: I get almost all the same symptoms as you! My itchy rash is on my head, neck and shoulders. Some grains actually leave burn marks on my tongue, too. ~Adrienne
I’m so glad I’m not the only one w/a dozen problems and having to change what I eat, the way I think! These are the diagnoses I know I have: Fibro, CFS, IBS, Hepatitis I have antibodies for Rhumatitist, arthritis and it just keeps coming.
I’ve had problems since the early 80’s. I’ve never been able to roll my own hair because my arm’s would hurt so much just trying. I couldn’t use a hair dryer unless I did it in stages. I loved going to the hair stylist but who can do that all the time??
At first my dr’s thought Lupus, they still watch the lab test, but thankfully I don’t have it.
Then they found Hypothyroidism. It kinda went down hill after that.
in 2007 when they found NASH that was the last straw….I cried for weeks. I was truly overwhelmed. I didn’t know what to eat anymore. What could I eat? I have high cholesterol and I’m overweight. I tried to go “all whole grains” and now I’m pretty sure I have gluten intolerance. My brain just couldn’t deal w/all this.
My daughter had to move in (because of the economy) w/her 3 kids under 5. My (2nd) marriage is dying right in front of my eyes because of her mouth and not helping me w/the kids. Of course, she thinks she’s helping. And here I am just trying to keep sane and deal w/all this.
Thanks, for giving me somewhere to look for nutritional help.
It is good read all the comments. I was diagnosed as being gluten intolerant with dairy allergy and candida.
I’ll get over it. But really…. I need some ideas of good lunch foods, snacks, etc. The quicker things.
It has only been 6 months…. today!~ I am having a very BAD day. I am sick of not being able to eat someting not crunchy or made with rice, etc etc. Usually I just grab something simple and deal with it. Today I am NOT. I am so frustrated. The subsitutue breads, muffins, cookies… pastas, I am not thrilled with them.
I am so venting… but would love some advice on types of food that are good that I should try. PLEASE … no pep talks
Thanks!
Pam
From Adrienne: I so understand where you are! I wrote a little about what foods I’ve found that I like, and a few people left comments as well. You can see that here: Gluten Free With Fibromyalgia: Foods I Like. Also, check out these other About.com sites:
All of those sites have forums, too. Hope this helps! ~Adrienne
I suffered with fibromyalgia pain for over a decade, and much like Adrienne, I arrived at a point where symptoms that I had grown to accept suddenly increased, and new ones (mainly GI issues) began to crop up. I was hardly able to make it through a day, and as a busy neuroscience researcher and mother of 2, this was not acceptable. It was determined that I was gluten intolerant, and after 3 days gluten free, I was a new person! Three years into the GF lifestyle, I feel better than ever, and have been pain free for that long! I was fortunate when it comes to the food prep part, as I have baked both professionally and for my own pleasure for years, so the GF baking was a challenge that I enjoyed taking on, so much so, that it had led to a series of cookbooks that aim to keep it simple, healthy, delicious, and affordable. No elusive flours and extremely expensive products in my recipes, and no hours of prep time – but tons of flavor and wonderful dishes that the entire family will enjoy – because, who wants to prepare multiple dishes – the food should taste good enough for everyone to want to eat!