Status
Not open for further replies.

MizzDeeDee

Distinguished member
Joined
Sep 24, 2013
Messages
129
Diagnosis
01/2009
Country
us
State
Va
This has been suggested a few times on this forum, and I've heard it from outside sources as well. I would really like some information on being gluten free.

First, how hard is it to go gluten free? Did it take a lot of effort? Is it a complete lifestyle change? How hard is it to be gluten free? Isn't gluten in mostly everything?

Second, what has a gluten free diet done for you? Does it help with stomach upset? Brain fog? Does it help with joint pain? Weight loss? I'm really curious how this has helped you as a sufferer of a chronic illness.

I'm just not that informed about this particular diet, and I would love to hear your stories!
 

savvychic52

New member
Joined
Oct 13, 2013
Messages
8
Diagnosis
00/0000
Country
us
State
South Carolina
I've been eating gluten free for almost 6 years and at first it was super hard but now there are more and more options out there. Practically every store has a gluten free section, you can order most things without "buns" and so forth with no problem and more and more restaurants have a gulten or allergy menu for you to order from. It IS more expensive. A loaf of Udi's gluten free bread, which I think is the best, is a little over $6, so it can take a toll.
It definitely is a complete lifestyle change. When you go out with people to restaurants while everyone is looking at the entire menu you are stuck with only a few options if the place doesn't have a separate gluten free options. Also, considering what type of restaurant you go to they can possibly have nothing so you have to always check before or else all you'll be eating is a salad. Even then, you have to check the dressing. It all depends too, on how strict you are wanting to be. If you have Celiac's disease you are super sensitive and can't even eat fries at most places since they use that same oil to fry other gluten containing things. But if you're not as sensitive or do not have an allergy things like this are easier to deal with.
Since i haven't been diagnosed with fibro, I just posted "car accidents and fibro" in the do i have fibro section, I cannot attest to how it helps with fibromyalgia but since I had a gluten allergy it changed my life. I had no more bloating, no more brain fog (which I had from my allergy), I had more energy and I actually felt good after eating so it really did change my life. And it definitely should not be used as a weight loss plan! I laugh when people tell me that because often times you are eating more starch in your diet because everything has rice or potatoes in it as a substitute to wheat. so instead you are eating things with rice four, potato flour and this adds calories. Also, if you eat brownies and cookies regularly there are now very tasty gluten free brownies and cookies so you won't loose weight by magically eating the same things but just gluten free.

I'm sorry I don't have more info about its affect on fibrmyalgia and I love sharing my experience with it so hopefully this helps!
 

MercyL

Distinguished member
Joined
Apr 30, 2013
Messages
120
Diagnosis
01/1986
Country
USA
State
CO
If you have digestive issues, the gluten free diet can help but, as far as I know, the diet does not manage other conditions. What usually happens is people start adjusting other areas of their diets along with instituting the gluten free aspect. Much of the improvement they see is the result of either eating healthier, in general, or their eating less, because the gluten free diet takes more work than eating out or buying prepared foods at the grocery store.

I am sure that people who love the diet believe otherwise.
 

jcairns82

Active member
Joined
Oct 9, 2013
Messages
82
Diagnosis
02/1993
Country
Ca
State
Canada
As mentioned, the gluten free diet will be expensive. There's just not enough market saturation yet to allow for lower prices. That being said, it's worth giving it a try. Around February, I did a 5 week cleanse that slowly removed different 'toxins' and I had the opportunity to see the impact on my system. I removed alcohol, caffeine, unnatural sugars, and gluten. I ended up returning to regular bread; however, I do now eat only gluten free pasta and that's been quite a difference for me. I was always quite weak/sick after it.

Any step that you can make towards making yourself feel better is worth it. Those of us with fibromyalgia tend to feel awful most of the time, so it's nice to have one less thing to complain about. ;)
 

poppymom

Member
Joined
Jun 14, 2013
Messages
16
Diagnosis
04/2013
Country
US
State
United States
I have IBS,GERD, gastroparesis (my stomach doesn't digest food properly) MS and fibro. Many people have recommended a gluten free diet to me over the past several years. Being a family of 5, I was reluctant to take that leap. My kids are older now and can make their own breakfast and lunch and even cook dinner once a week. In June, my gastro recommended i try a GF diet when he was adding a 3rd medication for my stomach because the 2 I was already on were not controlling my symptoms. After 3 weeks being GF, my stomach issues were much better. They were not 100% resolved, but better. I'm also not 100% GF. I'm not careful about cross contamination. I don't read labels as carefully as I should (like salad dressings, marinades, the non obvious sources of gluten) and I take the sacrament at church every week, which is a small piece of bread.

I didn't think it was doing anything for my fibro. However, after being on the GF diet for 12 weeks, I decided I was going to try to add a little bit of pasta back into my diet just to see how much I could tolerate just because it is expensive (spaghetti is 99 cents and GF spaghetti is 3.99). I ate a small bowl of penne pasta for dinner, like 3/4 cup with some marinara. Prior to this, my fibro was doing well. Pain level was at my baseline of 2-3/10 on a daily basis (I've had chronic pain for years from my MS). Within 6 hours, my pain level shot up and by morning I could hardly move because I hurt so bad EVERYWHERE. It took 3 weeks of GF eating to get back down to my baseline In addition, I was up most of the night with a stomach ache. Not worth it for me to eat gluten. I'm still ok with the tiny piece of sacrament bread and cross contamination, but I can tell if I get too much in my diet because I start to hurt more. I assume it's the gluten at least but I guess we never really know what causes us to hurt so much sometimes. It has not helped with the brain fog. I get that from 2 different diseases though and from chronic insomnia.

My sister in law has had fibro for 15 years. She has been GF for the last 3 years just to keep her fibro under control. She can't tolerate even the tiny piece of sacrament bread or the cross contamination. She is very sensitive. It's different for everyone. For some, it doesn't make a difference at all. There is so much that is unknown about this disease.

As far as treatments go, this is one of the least harmful things you can do. No side effects that come with medications. It works better for me than Lyrica or neurontin did for my MS pain, although I haven't tried them for them for the fibro. The diet can't harm you like the meds can. It is expensive but only if you try to use the GF substitutes. If you just eliminate gluten and don't try to substitute it, then it is about the same. Sometimes when I make spaghetti for the family, we have it with spaghetti squash. My kids get a healthy vegetable that they need (they mix it in their pasta) and I eat my meal with just squash and the sauce. I eat my burgers with a fork or on lettuce leaves, same with sandwiches.

I have not lost any weight on this diet. I've been trying to lose weight but finding it difficult. I'm mobility impaired from my MS. I have to use a wheelchair, or I can walk short distances for short amounts of time with a brace and walker. Not exactly calorie burning there. I eat very healthy, but I gained a lot of weight when I was confined only to the wheel chair for more than a year. I have heard if you try out a lot of the GF substitutes that you will actually gain weight. I haven't gained any. My weight has actually stabilized. I usually bounce about up and down 5 pounds.

It is challenging. Prepare yourself. Spend some time researching and shopping for needed supplies, collecting recipes and learning what you need to watch for before you do it. I had considered this off and on for over a year before taking the leap, so it wasn't as hard as I was expecting. It took my doctor recommending it for me to finally take the last step. I was well prepared. There are tons of resources available and lots of GF options in stores. The pedi gastro thought my son may have had celiac sprue when he was 18 months old. We did a trial of a GF diet while we awaited biopsy results for 3 weeks. That was 15 years ago. No one had heard of celiac disease or gluten. Nothing GF was available ready made. I think I was expecting that when I started this journey. I was surprised at how much there was available in my local grocery store without having to go to Whole Foods. My local store (HEB in Texas) even has a store brand of GF products and they are cheaper than the other stuff. I bought a cake mix for my birthday that was GF. My family can't tell the difference between my GF products and the regular stuff.

Let me know if you have any questions, but I'm still fairly new at this since I"ve only been doing this for a few months. Good luck in whatever you decide.
 

Siderea

Senior member
Joined
Oct 22, 2013
Messages
231
Diagnosis
10/2013
Country
USA
State
ND
I was born allergic to about 10 different things, wheat being one of them. I outgrew most of my allergies, but I never outgrew my corn allergy. About a year ago I started to realize my wheat allergy had started to come back, so I've been wheat free for about a year. I don't struggle with it when I'm shopping for groceries because I never have been able to eat most processed foods, baked foods, or packaged meats due to my corn allergy. I'm very used to eating mainly meat, veggies, and grains. I always have bought, whole, raw, and organic foods out of necessity.

That said, I don't mind the taste of gluten free food. The Namaste brand waffle mix is the tastiest waffle mix I've ever had! But overall, I eat very little flour because I feel sugar-high when I eat too much. I feel the most stable when I don't eat flour, and I have the least pain when I avoid all grains.

The hardest part is eating out. I normally go for Japanese (or any Asian place that serves meals without sauce and with lots of veggies and rice,) Greek, or Mexican. I always have to tell the server to adjust the dish (no tortilla, no sauce, salad instead of fries, and so on.) I can make it work, but it's easier not to eat out.
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
I've a friend who follows a gluten free diet, but she does this because she suffers from the celiac disease. According to her this diet isn't for everyone, I've seen what she eats and honestly it look like a really tricky lifestyle! Not very easy to follow, specially if you're used to eating what you want. If you're suffering from celiac disease then it's really recommended, besides... you will be consuming far less carbs as well. That's really good! Specially because carbs usually end up converrting into sugar and sometimes turning into fat... which if stored in your abdominal area can create an increase of cortisol! Everything seems to be connected :/
 

Adorkable Druid

New member
Joined
Oct 30, 2013
Messages
2
Diagnosis
10/2013
Country
USA
State
Arkansas
Gluten free diets can be challenging especially if you try to replace everything you normally eat that contains gluten with a gluten free option. If you just simply remove the gluten items, and stick to a diet of vegetables, lean meats, fruit, and other foods that are naturally gluten free, it's not that expensive. I've done it for 5 years now.
 

Bella28

New member
Joined
Oct 31, 2013
Messages
5
Diagnosis
00/0000
Country
US
State
California
I tried it for four months and I still had pain. Now that I've gone hog wild with sugar, I can see how diet makes a small difference. For me it wasn't a huge difference and I found this frustrating. It's not terribly hard to eat gluten free, but it takes some extra preparation. Hope it helps! I'm getting on the bandwagon again soon :)
 

takechargemichelle

New member
Joined
Oct 31, 2013
Messages
1
Diagnosis
10/2013
Country
US
State
CA
My goal is to help others via my experiences.

Will try to keep this simple...for those who have been diagnosed with FIBRO, I truly believe it is to your benefit to have a stool test done for Candida/yeast. Yes, yeast is in breads, yet sugar in foods can really mess up a person too.

It makes sense that going gluten free will help FIBRO symptoms due to the yeast.

Prelude...four specialists have diagnosed me with FIBRO. They came to that diagnosis because they could not get to the root of my health issues.

I'd felt I had not gotten anywhere with trying to treat the FIBRO and sought a doctor who believes in Candida/yeast invasion of the body.
He ordered a stool test and low and behold....finally, some results that were abnormal! Yay- I have been hoping for just one abnormal test....if you can find a problem, then you can move on towards a remedy. So many tests came back normal, which left me distressed because the doctors just kept saying I had FIBRO.

I have battled Candida for over 30 years. It can seem almost impossible to find a "Western" doctor believes in and treats Candida, yet there are some! Holistic doctors are usually much more informed on Candida.

Looooooong story; over 30 doctors, lots of pain, lots of testing, too many attempts with medication (they make me very ill) and after a recent stool test indicating yeast is all over my organs, in my ears, my throat...I feel like I am on the right path to maybe getting some relief because I found a doctor who thinks my pain and other health issues are related to Candida and not FIBRO.

The symptoms for FIBRO and yeast are very similar. I cannot stress the importance of doing your own research and being your own advocate with doctors. Please research Candida symptoms online so you are informed.

My mom almost died recently from Candida; the yeast manifested in her lungs, causing fungal pneumonia. Up until then, she did not believe in Candida's horrible poisoning of the body, yet she does now. BTW, she thought she had FIBRO and did a vicious cycle of antibiotics, steroids, etc. Those medications only made her yeast/Candida worse until it almost took her life.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
I have many food allergies and yet find many diets hard to follow because the main ingredients that supply the added protein I am allergic too. A good friend of mine follows a strict vegan diet. But she can eat peanut butter which is a mainstay. I have to avoid most cheese and milk, eggs are limited and many meats. I think it is the additives in the food that give me the most grief. I would like to remove sugar from my diet, but again I am limited in options as I am allergic to most types of honey. I do use some syrups and stevia, but it is hard to buy things that do not contain sugar on a big scale.

As you all have said gluten free is very expenive. Is it possible to make these recipes homemade to avoid the high cost of buying the boxed goods? I would enjoy hearing more about this topic. :)
 

trayne91

Distinguished member
Joined
Oct 30, 2013
Messages
154
Diagnosis
10/2013
Country
US
State
Wisconsin
I have Celiac and have been gluten free for 1.5 years. It's not any more expensive or hard to do depending on what you like to eat. You have a complete hunter's diet to choose from for certain. meat, veggies, potatoes. All summer long we grill out any meat imaginable, eat all veggies and fruit and potatoes (I eat mine with cheese and onion and bacon, etc.). Winter cooking - just as easy, but if you want to eat any pasta, you'll have to get gluten free pasta - the cheapest place to get gluten free pasta is walmart. the grocery store sells it for $4-$5 a bag, but you can get some for $2 at WalMart. Betty Crocker makes gluten free brownies, etc. Pillsbury makes gluten free dough. Red mill makes gluten free flour, pizza crust. The hardest part is eating out. I just rarely do it and only at places that are really careful due to cross-contamination. For instance Dominos gluten free pizza, not for Celiacs as it's cooked in the same ovens as gluten pizza. I make my own pizza you can get gluten free flour and yeast or pizza crust, johnsonville sausage, mushrooms, hormel pepperoni, etc. just read the labels. When I want to make cookies, which is cheaper than buy those crap expensive gluten free cookies, I make my normal recipes but buy rice flour instead. It's that easy. The hardest part is realizes everything has gluten in it - your toothpaste, shampoo, soap, ketchup, mustard, spices, ice-cream (I only eat blue bunny and Edys or go to cold stone and have them make it special for me with gluten free ingredients of course ie. no brownies). Read the labels and if you aren't sure, you don't eat it. I was diagnosed fibro after gluten free so I can't say gluten free takes care of anything for you. I had symptoms with Celiac of brain fog, anxiety, inflammation, tingling in legs, swollen lymph nodes, asthma, fatigue, bloating, diarrhea, recurrent yeast infections, constipation, irritability, swollen feet, ankles, and hands, acne, migraines. All got better gluten free - lost 30 pounds (all swelling/inflammation/water cuz I do not exercise), no bloating, infections subsided, went off migraine pills, no swelling this summer, lymph nodes down, I wake up before 10am without an alarm clock, bowels are normal, acne cleared up - but I still got headaches and some anxiety (my anxiety - i'm not talking about worrying about things - I'm talking about Anxiety - real anxiety - feeling out of my head, in a fog, going to faint, blacking out, blurred vision, can't see anxiety). It was after all this and still having some symptoms that I got nodules in my abdomen the size of marbles that are sore and pinch me like hell and sore all over my body and cramping so bad I cry in pain like I do with the abdominal nodules. I can't cross my legs or my arms or rest my hand on my face. My muscles spasm. I have deep aches to my bone. My knee gives me so much trouble I can't put weight on it most of the time. I am sore to the touch all over, especially certain areas like my outside thighs and arms. Hurts just to sit as my butt and underside of legs hurts just touching a chair. It's ridiculous. And gluten free does absolutely nothing for that as I was gluten free first. It is healthier than eating gluten as I have learned what horrible garbage gluten is and how the gov. has increased our gluten content so much over the years on purpose and now we all have issues so I advise not eating it and it may help with brain fog and migraines, etc. for sure. But not for your body pain. In my experience anyway.
 

WillowPaws

New member
Joined
Nov 24, 2013
Messages
8
Diagnosis
10/2013
Country
US
State
Oregon
I'm a vegan who is in the process of converting to GF; I know fibro sufferers who said it made the WORLD of difference for their pain.

I've had a lot of experience radically altering my diet, and I just felt the need to say -- gluten free is not inherently more expensive than any other diet. It only gets expensive when you try to eat exactly like you did before. If bread has been a mainstay for your diet, and you decide to go GF, it will be VERY expensive to keep eating bread -- but you don't have to! At all!

When I became a vegan I didn't start buying meat products and fake cheese; I just started eating different foods, and saved a lot of money. So if you want to eat GF, then don't have bread all the time. Potatoes and rice and oats are cheap and delicious and gluten free ~~ you can eat beans, nuts, fruits and vegetables galore ~~~ you can get all your nutrients easily without eating bread or pasta.
Every diet seems difficult at first, but I think if you give it some time you'll find that it just took getting used to.

**This doesn't apply if you eat out frequently, but if you do, then you've got plenty of financial buffer. It's more expensive to eat out gluten free (unless you're somewhere like Portland, where I live, where alternative diets are well-supported by restaurants) ~~ but eating out is in itself a very expensive choice, so if you're trying to save money, it's not wise.
 

love2travel

Member
Joined
Dec 27, 2013
Messages
19
Diagnosis
04/2008
Country
CA
State
Alberta
I was diagnosed with celiac disease 3 years ago and FM nearly 6 years ago. I have been very strict with eating gluten free and have seen zero improvement in my FM symptoms. However, I do know others with both celiac and FM who have experienced pain relief.

There is no need for gluten free to be more expensive, especially if you avoid processed snacks that are not necessary, anyway. I actually tracked expenses on spreadsheets for two years and they were about the same. I am a cooking instructor and recipe tester and have catered for celiac guests at weddings - it definitely is possible for cooking/bakingfrom scratch to taste just as delicious (except breads are not the same as they need gluten). Breads can be ok but will never have the same stretch, texture or crumb.

Eating at others' homes is impossible unless I am doing the cooking using my own supplies to prevent cross contamination. Eating out anywhere is always risky. But now it is second nature to me.

I really, really wish it would help with pain, though!
 

shattered

Member
Joined
Dec 20, 2013
Messages
19
Diagnosis
05/2011
Country
US
State
texas
be careful not to fall for the gluten free processed fad. There are many gluten free products out there that are unhealthy! made from cornstarch, and sugar. I am gluten free and try to eat mainly unprocessed, healthy fruits and vegetables.
 
Status
Not open for further replies.
Top