Potential Link Between Gluten Allergy/Sensitivity and Fibro?

So, I had been feeling extra bad lately, probably due to the stress of our dog going through an extensive heartworm treatment. I have been spending most of my time in bed sleeping or on the couch resting. Also, from some slight depression, I hadn't been eating much. This led me to an "aha!" moment. I woke up from a long nap with a migraine. Still unaware of what triggers these wake up migraines, I thought about it. I thought about everything I did before I went to sleep. I knew I had eaten some crackers. Well, I was hungry, so I ate a meal bar. Within minutes, my stomach felt tore up like it does all too often. I thought about this for a moment. Gluten! Maybe the reason for my IBS, constant nausea, and stomach upset is gluten! I ran to my computer and immediately began my research. What I have found is that gluten intolerance and/or Celiac disease can actually cause fibro and/or fibro symptoms. As I don't have insurance, I can't run to a doctor to be tested. As of Thursday, the day that my husband gets paid, I will be starting my gluten free diet. While this means I'm losing some of my favorite foods, if there is a chance that this dietary change could help me get back to work and back to living a normal life, I'm pumped and can't wait to see what happens. Even if it does not get rid of the fibro, if it just gets rid of my nausea & GI problems, I will be ecstatic. However, coffee is apparently on the no-no list, because of some protein that reacts a certain way with foods similar to gluten that it actually causes the same upset as gluten itself... I will miss my coffee, and all of the pasta I eat so often (not very excited to try that rice flour based pasta...), but I hope it will be worth it.

Has anyone else gone gluten free, and if so, how did it work out? Also, were you diagnosed with Celiac, or did/do you just feel you're gluten intolerant? Did it help with your fibro symptoms, or just the GI problems? Maybe it helped with neither? Or both? Let me know!

I did try the gluten free diet for 2-3 weeks, it helped with my abdominal pain, what I have noticed is that I am sensitive to gluten, but gradually added some back I to my diet, I’m about 75% gluten free, I avoid bread completely, I eat brown rice & gluten free crackers, I also use gluten free cereal & oatmeal.
What I found that helps my fibro more was eliminating sugar out of my diet… Look up Candida diet , I have also substituted milk with almond milk … Couldn’t give up coffee, but do drink tea in the afternoon instead of coffee.
Diet changes are all apart of managing fibro, you have to find what helps you & what doesn’t, for me when I eat sugar I do feel worse …there is a lot of research that shows yeast overgrowth can result in fibro like symptoms, especially in joints & muscles, sugar helps the yeast grow , so it’s just a way to help keep it in check, also sugar, carbs also cause inflammation in our body.
There is just so much about nutrition that we can do to try & help ourselves… My thought is, no diet is going to cure it, but some changes can make it better… It just takes time to find what helps
Good luck with the gluten free diet, give it at least 2-3 weeks, first week I did it I lost 7 lbs
Hugs& blessings
dee B

Hi....I found out that I had food allergies that may or not be related to Fibro. The ex-doctor who told me about my Food allergies is a non believer of Fibro. Notice I said ex doctor. lol Any who, I am doing gluten free and I find that you don't go without favorite foods; there are so many foods out there that are gluten free that some of us just don't realize. Some of the pasta may not have the best taste on their own but that is where you can make your own sauces that will just make it delicious. I have lost about 30 lbs. I order snacks online but there are so many snacks out there you can have. If you have a favorite big store; you can go online and look for all the gluten free products they have. You will be amazed at what you find. It's all about eating veggies, fruit, meat, poultry, fish, etc. The standard eating healthy foods. It's the snacking that is dangerous when you want to lose weight. I have been back sliding with Coke (gluten free). I started to have one a day; bad Sissy bad. I'm back on track again because I find my body feels better. The IBS is my enemy but it's not quite as bad when I try to stick to gluten free. The pain is still there but my energy level is better and I can do more things during the day. I don't have flare ups with Fibro; just daily bad pain but making better healthy eating choices makes me feel great and who knows in time if it might lessen the pain. I will know after I give it a year. lol

So how can you go wrong for eating better and see for yourself. Good luck... Sissy

Well, my problem with milk is that I have had bad reactions to drinking soy milk, and I just can't drink almond milk - to me it tastes absolutely awful. So for me, regular milk is the only way to go. I have not really tried coconut milk as a substitution, but I have tried the thick stuff in coffee and it was dreadful...

Good to know that it's helping you. I didn't realize soda had gluten in it until yesterday (a few days into going gluten-free), I had some sharp pain in my stomach.. I checked the ingredients on the soda I was drinking and realize it has "food starch" listed on it... (Sharp pain is somewhat normal for me - mimics appendicitis) I would never have guessed that soda had gluten, but then again - I know there's nothing good in soda, so I should have known. Other than that, I've been drinking just water and tea.

30 lbs!? Wow, I would love to lose that much!

I read that statistic, it's kind of what gave me the last little push to go gluten-free. My thought was "Okay, I have all of these gluten sensitivity symptoms, fibro tends to cover up some underlying issues, fibro sufferers often times have plenty more wrong with them than just fibro, I eat nothing but gluten, and WHAT!? 50 percent! There's a 1 in 2 chance that's me! Yep, I'm going for it!" Yes, soy sauce - but only americanized versions of soy sauce. Authentic soy sauce is gluten free. Still, I think I won't be going out to eat for a while... I went to a salad place yesterday and they gave me a hard time when I asked about their gluten free dressings. I did not know that it was in mustard... Boo. I just bought some authentic German mustards a few weeks ago too... I'm trying to go all out with it to give myself the time to figure out if I actually am gluten intolerant, but my husband keeps trying to get me to do what you're doing. He keeps saying "ween yourself off, don't just go cold turkey." But if that's what's tearing up my stomach, I don't want it anymore.

Funny you should mention....I read on FB an article that said ALL of our wheat is GMO'd and the change they made has give the bread, cereal, etc an opiate like effect where you want to eat more...not necessarily the bread, but it triggers you to just eat more. Sounded a little odd to me, but I am going anti-GMO, so I stopped wheat. Son of a gun...IBS settled down, stomach went way down and I was out of bed and slowly building back my strength. Best of all---absolutely no cravings!! I had already stopped eating sugar, but the cravings were terrible, so I bought stuff without sugar, but sweet. I no longer crave chocolate (A BIG craving for me) sugar or bread, cereal, etc. I had some plain shredded wheat in my cupboard and was going to eat it instead of tossing it, but 2 tries taught me I can't do it. So...this is my daily intake and it is SO EASY! Breakfast: oatmeal (no sugar) and flaxmeal ,with blueberries, apples and bananas and a small amount of walnuts.

Lunch:Nutribullet shake with any greens I bought from the Farmer's market (organic), orange, the other half of the apple and banana, a few seeds (pumpkin or sunflowerd) a 1/2 scoop protein powder and water and a 1/2 carrot. Surprisingly delicious!. Dinner: Non wheat tortilla (black bean/flax) Canned black beans (rinsed to rid of salt) (or if I have feeling OK I make my own), brown rice, the same greens as above and pico de gallo. I was putting low fat cheese on it but I don't miss that. If I have to snack at night (the older I get (65) the earlier I eat dinner LOL--so I eat dinner at 4pm. and sometimes get hungry at night so I keep a sweet potato in fridge and I nuke a half a one with real butter/olive oil. YUM!

This simple plan works for me in so many ways. Easy shopping which is hard for me. Easy prep which is also hard. Highly nutritious.(lots of anti oxidants , anti cholesterol and heart healthy stuff) My cholesterol has dropped , IBS settles down, weight drops off, no cravings. Energy comes up. If I have a very bad flare up I am registered with meals on wheels and I can get 1 meal delivered. I do not feel good when I eat these, but I must eat so I do it.

Your diet sounds like what I am aiming for. However, I am trying to ease my way into it. I have not given up sugar, and I certainly don't want to give up sugar and gluten all at once. I did my first gluten - free shopping trip last night and focused mainly on meat and vegetables. We didn't really get any fruit, but the grocery bill was so high. It was 110.00 when we normally spend like 50.00 a week on food. My husband was getting angry with me the whole time and parading me through the baked goods aisles. I bought some gluten free cookies in the health food aisle, as well as some gluten free chex mix, gluten free pasta, and gluten free tortillas. My husband actually started to embrace it and picked up some gluten free pretzels for himself - but then told me that if his work has pizza today that he's going to eat it.

For dinner I made some strip steaks with peppers, garlic, and onions in some olive oil and paprika ; served with a baked potato. I have some leftover steak for my lunch today. Tonight I'm not sure what I'll be making.

I would really like to get into some healthy shakes, like you were talking about, but we have to buy a decent blender first lol.

Okay, so my husband that was seeming so supportive about this dietary change that he was going to make the change with me; He made me cry at the grocery store last night, or in the parking lot at least. Up until last night, we hadn't going grocery shopping for any gluten free foods - ever. All we had in our house that I could eat the last few days was bananas and peanut natural peanut butter. So that's what I ate - three days in a row and a salad for dinner one day. Meanwhile, my husband was eating cheeseburgers and french fries, crackers, cookies - all right in front of me. Yesterday finally came - I couldn't wait to eat some protein(other than peanut butter lol) and some non-gluten starch! Well, instead of taking me to our normal grocery store, my husband takes me to a slightly higher end grocery store. We get in and they have a HUGE gluten free section. I was so happy to see some of my favorite foods available in gluten free! I relished in the moment - then I moved on to what I had on my list.

He wouldn't let me buy anything! Then, he paraded me through the baked goods section of the store - with all of their cakes and donuts! I started gravitating towards a chocolate cake without even realize, but he said "what are you doing!?" and that snapped me back.

We left the store and in the car he said "Where do you want to eat?" I responded with "I can't eat anywhere! The only place that I could go out to eat is Domino's that I know of." So, we went to Domino's - where I could get a gluten free pizza. Then standing in there, preparing to order, he says "let's go."

What!? I'm hungry! I started to cry. He apologized for "hindering me with gluten" and took me back to the store. The second time around he actually embraced it. Unfortunately, that was before we got to the checkout. Our total was 110.00 and when I said "I didn't expect it to be quite that much..." His response was "Well, I expected it to be more. All of your stuff cost at least twice as much as we would normally spend." I of course took that as him taking a stab at me...

I don't know if he has a different take on it today or not - as I haven't seen or spoken to him because he had to get up for work at 6AM(a bit too early for me) but the way I see it is he better get with the program because I am NOT going to be preparing meals for him that I can not eat.

My doc actually recommended going Gluten Free when I got my fibro diagnosis. I have actually had the biopsy for Celiac's and it was negative, but she said that 75% of her Fibro patients have seen a significant improvement in IBS, migraines, and depression / CFS.

I went gluten free the next day, and it has made a significant difference for me. I can't tell, per se, when I have been "glutened" via Cross-contamination or something like that, but I do feel better, and have had much less wake-up migraine problems, along with the IBS evening out. Summer is a great time to go GF, since so many fruits, veg, and meat are available. We grill 4-5 nights a week.

I am lucky enough to have some friends with severe Celiac's who have done a ton of research and released a couple of AMAZING cookbooks GF. They also have great subs for other dietary sensitivities. My family likes the taste of those recipes so much, they are starting to eat my GF stuff instead of the regular wheat stuff. I have also lost weight because it forced me to give up a lot of the junk and processed crap. The recipes I use are primarily based on brown rice flour, instead of the processed white wheat flour as well, so the glycemic index and calories / carbs are significantly lower. It has also helped my diabetic MIL since I control how much sugar goes in to any recipe. My friends have a great blog with many recipes and ideas - search No gluten, No problem!


Feel free to message with any questions or just for support.

There is an App called "Find me gluten free" if you have a smart phone that will really help with the restaurant thing. Also, eating gluten free does not HAVE to cost more, just focus on fruits, vegetables, and meats - summer is a great time to grill! I get spoiled because of where I live, but if you can stay more towards naturally gluten free foods - instead of gluten free substitutes for carb-ie foods it will probably go better. If you have a King Soopers / Dillions / Kroger - they are a chain that has done a ton towards gluten-free availability without getting nailed by price. You don't have to go to Vitamin Cottage / Whole Foods(Paycheck) / similar.

Feel free to message me for support or questions!

Sounds good. It took me a very long time to get off sugar. Now it makes me sick immediately if I try to eat even a small portion of baked goods. Sounds like you're doing very well. I hear you about groc. bill. Man... groceries dare outrageous now! It is only me so I can buy small amounts and it still kills me to pay the prices! My roommate uses her old beat up blender and throws ice, carrots etc into it, but she doesn't care if it breaks. It just keeps on going! LOL

Hi Boratsmom,

Good to hear from you! Yes, I do think that for some of us, that gluten is a problem! I also think digestive issues, chemical sensitivity, underlying undiagnosed autoimmune, endocrine, injury or other traumas can be the cause!

This is such a complicated multifaceted condition/syndrome. After seeing a Rheumatologist for over a year, he has decided that my Fibromyalgia was most likely caused by my primary disease, Psoriatic Arthritis!

I did do the food elimination through my DC in the very beginning. I was okay there, but I'm glad he was wise enough to check it out for me!

Wishing you well,

SK

Well - the doing very well only lasted so long. We were out last night at our local casino and I got really really hungry - I was craving a cheeseburger... When I couldn't focus on anything because all I was thinking about was eating a cheeseburger, my husband said "let's get a cheeseburger and we'll split it." That's exactly what we did. Well, what we intended on doing. I scarfed my half down and then he gave me half of his half. It tasted like the best burger in the world to me in that moment. I am definitely feeling it now, though. I feel very very tired, so it seems like it's making me lag a little. Haven't had any GI symptoms yet, though from it. I don't plan on breaking my diet again, and hopefully having that cheeseburger will get rid of the "OMG I can never eat a cheeseburger again" feeling.

I need some tips on what to do when I am out of the house. I've thought about carrying around a little bag of gluten-free pretzels with me, but it doesn't seem like that would be enough. I get hungry 5-10 times a day for snacks/little meals. Also, when/if I get another cheeseburger craving, what can I do to curb that craving?

I did get a blender. We have made one smoothie so far two nights ago. We figured out the cost of that smoothie was roughly 1.50 for each my husband, and myself. I don't think 1.50 a smoothie is too bad. The biggest expense of the smoothie was the Greek yogurt, as we used half of a 4.00 container between the two of us. Because of that, I'm going to try with other liquids; milk, tea, juice as an alternative to the yogurt. I would like to bring the cost of each smoothie down to .50 - 1.00 so that way we can have a smoothie a day for breakfast and this diet won't be so expensive. We only did a simple strawberry banana smoothie with yogurt, milk, ice, and 3 teaspoons of sugar. I would like to try adding some greens and making a smoothie particularly designed for giving me energy throughout the day, as I am no longer drinking coffee and my husband and I would like to give up soda completely. I've decided that I am going to try sweet tea(will work as the sweetener, liquid, and caffeine), with an apple, some spinach, and some bananas. I might also add some flax seed, but I want to try it without first. I have some carrots, spinach, peppers, tomatoes, cucumbers, broccoli, and onions growing in my garden, so I can't wait to be able to harvest that stuff - I think it will drop my grocery bill a good portion, at least for a few weeks.

I would love to grill that often, and I think it would make going gluten free so much easier and tastier. The problem I run into with that is my husband works 2nd shift and doesn't get home until 11PM. I really try to avoid doing anything that is potentially dangerous for me when he isn't around. I fall a lot from the spasms I get in my back & legs, and our grill is a little cheapy & not very sturdy. I can imagine myself falling to the ground, reaching for anything to grab onto, grabbing the grill, then knocking it over/pulling it down with me. Then I'm laying in the driveway, covered in what was supposed to be our dinner and piping hot coals. (As I'm sure you can tell, I've also got anxiety problems lol) Anyway - we only grill out when my husband is home. Luckily this Thursday is his birthday and he took a long weekend for his birthday. Not so luckily, I have invited some of his family to visit from Tennessee to surprise him for his birthday; Which brings me to the next point I want to make.

How do I deal with being in the beginning of a gluten-free diet while also having to feed some of the least health conscious people I've ever met? They care about quantity and taste(I want to point out here that I consider myself somewhat of a "foody" and what they think of as tasty is pretty sub-par), not healthfulness. If I don't make food that they like, they will want to go out to eat in which case I will be sitting there not eating, while everyone else eats. I can't even say "Well, let's go to any of THESE places so I can eat with you guys," because they won't listen (And I mean straight up ignore that I'm there and saying anything.) I guess I should word this another way... How do you make children that live on fast fast food quality food, eat homemade gluten free food for a few days?

Sounds like you are going to have to have a separate diet, or go for places that will have salad and fruit for you! When you go out, it will be tougher on you! I wish you the very best!

Hi Boratsmom, just had blood test for celiac disease today. Doctor said I had to have been eating gluten
prior to the test or could get a false reading; so am bloated and very uncomfortable today. Starting to reduce gluten as of tomorrow to see if I am gluten intolerant ( coffee will be the last to go).). We’re checking out the simplest diagnosis and easiest to fix, then move on to IBS or problems related to diabetes. The last one is the worst, lots of colonoscopies etc. Hoping it’s gluten.

Hope you’ll update us on how you’re doing. Thanks for posting I’m reading all the replies with much interest.

You would be amazed at the variety of restaurant, etc, that have gluten-free options (Wendy’s has a huge campaign on this). You might also be surprised at what the family enjoys. Part of my family are huge carb-ies, dinner is 4 carbs and 1 meat and no veg. I just started cooking for them, and saying, hey, give this a try, and they really really like it. BBQ (especially if the husband is home) is really easy to keep gluten free - you can still do meat, veggies, potato salad, macaroni salad (use a rice based noodle - most people can’t tell the difference), fruit salad. Desserts can get a little harder, but frozen desserts are generally gluten free (ice cream, yogurt, pop sickles). Even burgers and fries - you just ask for no bun, and if they tease about it just tell them to go take a flying leap.

There are people who you are not going to be able to convert. I don’t try to get everyone around me to live gluten free, I just make sure I keep my options available when I can. Worst comes to worse, stick a couple of Lara Bars, or Uber bars in your purse. Just do the best you can, and know that you don’t have to do this all in one giant leap.

Try cooking something from the site I mentioned and don’t tell anyone its different. See how many can actual tell - it is a fun experiment :-).

Yes! I cut out sugar 1 week ago and my migraines are gone-it's amazing! Had no idea how much of an impact sugar had on me.

Well, I spoke to my mother-in-law today and one of the first things she asked is "are we going to be able to eat normal when we come up, or are we going to have to eat what you eat?" She made it sound so horrible, even when I told her we'll be doing a lot of grilling out... The cheesecake I'm making is gluten free, and I'm not going to tell them. I'll see if they notice. My husband and I have noticed that we don't like stuff made with brown rice flour, but if there is a combination of flours, including brown rice flour it's fine. I think we like tapioca bases better maybe. We know that I can eat the meat (and the fries as long as I don't eat anything else really greasy the rest of the day) at our favorite barbeque place, so we might take them there. Also, for tacos/fajitas or whatever, we're going to purchase some flour tortillas for them, so they don't have a fit - we'll just make sure that everything is separate... We didn't like the tortillas in the gluten free section, so we have the little corn tortillas(why don't they just make large corn tortillas for gluten-free diets instead of rice based?) I'm going to download that app that you talked about before they come up, just in case. My problem with going out, as I touched on a little bit in an earlier post, is that I'm a super taster, making me kind of picky - and I love GOOD food, so finding something that I actually enjoy when I go out is difficult. I'm usually unhappy with most things when I go out to eat because I can generally make the same dish - only better and for cheaper lol. I'm sure if I have to, I can manage lol.

Also, as an update, I tried out that smoothie that I was talking about. The one with sweet tea as a base, an apple, a banana, and spinach. It did not give me the boost I was looking for. Also, I think it would have been better without the banana, as it did not mesh too well with the taste of the tea. My husband really liked it though, and it was pretty refreshing - just not energy boosting. Also, I tried some coffee today, to see how my body reacted without having much(if any) gluten in my system. No stomach ache, no IBS symptoms, however there was a little bit of uneasiness in my stomach. I think I can have some coffee here and there, providing that I'm following my diet otherwise. The bit of uneasiness could even just be from some leftover gluten in my system from the half cheeseburger I had the other night (by the way, I no longer have any desire to break my diet for another cheeseburger, so I think eating said cheeseburger was the right decision. I think I can stick to it now a lot easier).

Also, since I've been on the diet and broken it once for the half cheeseburger - And since I've taken notice to how my body feels - I think I've figured something out. I think that gluten may be the direct cause of my CFS symptoms, as well as my GI symptoms, and maybe even my extreme migraines. Since I have been on the diet (only about a week now) I have not had a single headache. The only time I've felt overwhelmed with fatigue was the day after breaking my diet.

Sunday (the day I broke my diet, but actually hours and hours before I broke my diet) I was actually really good with it. We went for a visit at my aunt's house. She made baby back ribs, corn, potatoes, barbecued chicken, and cake. I ate some potato and chicken. I did not eat the ribs because I knew they were pre-made and I know any pre-marinated or pre-seasoned meats run high risk of being full of gluten. I also ate some ice cream in lieu of cake, which someone actually went out to the trash for me to get the packaging. Upon checking the ingredients, I was able to eat some ice cream. They were all very supportive of the whole think, which I was really thankful for. I also asked in advance about the chicken to make sure she didn't put flour on it, and to double check the barbecue sauce she was using (sweet baby ray's).

It was actually really easy to eat at their house, now if we went on a past night, I'd say it would be much more difficult, but seeing as I thought going to someone else's home to eat would be the most difficult out of everything, I was really pleased.

My husband is actually really getting on board now, which I'm really happy about. I think when he was being mean, he was just really finally realizing what "gluten-free" really meant. I think he finally felt the way that I had been feeling all of last week. Over the past few days though, he's actually been in the kitchen cooking with me. Normally, the kitchen is all me, but he's actually made me food once and helped me in the kitchen twice. He said that maybe he'll do all of the meats(I don't like handling and cooking chicken really, because I think it's gross before it's cooked and I can't ever get it to cook right, so that's what he's been doing the last couple of days) and then I can do whatever else. I'm happy to see him actually getting involved with our food. He was also productively helping me shop the other night, by picking out some veggies and picking up some more gluten free items to try out.

One more thing that I've noticed is the tools I use most often in the kitchen have changed. My chef's knife, cutting board, and a pan have been the staple items to be used in our kitchen. We're going to invest in a higher quality chef's knife and some better cutting boards also. The blender is definitely something I can see being an every day thing, but like I said, I want to find something that I can have in place of coffee - via smoothie.

Last night, we had a salad with a single chopped romaine heart, a handful of spinach, two celery stalks, half a cucumber, half of a large tomato and some cheese - then topped with dressing (oil and vinegar for me and gluten-free certified ranch for him) followed by some sauteed chicken and red peppers. It was really good and surprisingly really filling. We did not even eat the whole bowl of salad, so we saved some of the chicken (we only cooked up a single breast total) and peppers and took out the cucumbers from the leftover salad. This stuff went with him today for his lunch accompanied by some corn tortillas and some celery for a snack.

Sorry it was so long, I just wanted to give a good update before my long weekend starts tomorrow night (when I doubt I'll be on the computer much with his family here).