Sure Foods Living - gluten-free and allergen-free living

I have been diagnosed with fibromyalgia, although I also have elevated inflammation markers that cannot be explained. I have been mostly gluten-free for a year now, with more than a six-month stint at one point. I have also been tested for celiac with all of the blood tests available and come back negative. Being off wheat helps, particularly with my digestive issues, but does not affect the pain at all. I’ve had slightly more success limiting carbs in general, but more for energy than anything else.

Alison,
I was living with body pain and all sorts of symptoms on those lists for a long time. Then diagnosed with Fibromyalgia 4 years ago. Being the type to research into health issues, I came across books and articles that listed my symptoms as a reaction to food allergies. That began the dawning of the light for me. I found out that Gluten Sensitivity is NOT an allergy, but rather a systemic reaction to Gluten. Wow. However, my journey has been a long one- not just because it took me several decades to put all the info together and arrive at the fact that I can’t eat Gluten, but because I then took 8 years to accept it! Not easy in our Wheat based culture!
I had gone Gluten, Dairy, Corn and Potato (nightshades) free 8 years ago and ended up feeling FANTASTIC! But, then slowly I began reintroducing all those products back into my diet and just as slowly regressed back to feeling terrible. That’s when I got my diagnosis of Fibro.
So, springtime this year, I had had enough and went Gluten Free again. All my body pain is gone! (except for the normal soreness following a change in my workout routine) I also have been using much nutritional support, esp. L-Glutamine powder to heal my stomach and intestinal walls, Quercitin with Bromelain and Vitamin C and Acidophilus.
THANK YOU!! for this article.
Now, how do we get this info out there?
I am constantly getting on my “soap box” at the grocery store or out with friends and family. But, -and I understand this- people are unwilling to believe that food is the cause of their health issues. Food that has been touted to have Nutrients, Vitamins, Energy (and tastes so damn good)!!!! Our Dr’s and Hospitals are still completely brainwashed by big Pharma and years of skewed medical school training in nutrition! When I improved my Bone Scan results by being off Wheat and Dairy, both my Gyn and my Internist said the same thing! “oh you have to at least eat yogurt”! They had no ability to absorb what I had REALLY said! THAT BY CLEARING CERTAIN FOODS FROM MY DIET AND THUS HEALING MY INTESTINES OF THEIR DAMAGING EFFECTS, I HAD ACTUALLY GROWN BACK BONE!!!
Yikes!

Thank you again for this article- Well done!
Ann

Arrgh!! Don’t you wish you could just force people to try? Just give it 30 days and see how you feel? What do they have to loose? I think that unconsciously people choose eating what they want over feeling healthy. So the very thing they think brings them comfort, brings them agony. It’s more expensive, true. I cannot imagine trying to make it work on disability. However, if I was on disability, I also wouldn’t buy a $2 muffin at Whole Foods. I’m such a crab.

Hi Adrienne,
One of the interesting things about celiac disease is that it is the only autoimmune disease with a known cause - gluten. There are many doctors and researchers that believe that perhaps gluten is the root of many autoimmune disorders. And it IS genetic.
Is your father gluten-free? It sounds like he should be, especially if his sister has already been diagnosed with celiac.
As for you, I would recommend that you eat gluten-free if it makes you feel better and to prevent further medical problems if it runs in your family. How to eat gluten-free on a budget… if you can’t afford the gluten-free specialty products, there is always rice, corn, potato, meat, cheese, vegetables, and fruit! Make your own gluten-free cookies or brownies from a mix (freeze whatever you can’t eat yourself.)
If you need more help, please let me know!

I have just been reading up on glutence intolerance as a few things I had read started me thinking that this might be the cause of my problems.

I was diagnosed with transverse myelitis a year ago after my legs and feet went numb and tingly. I was tested for lots of things but everything was negative so I was diagnosed with transverse myelitis, an autoimmune condition causing inflammation of the spinal cord. I had MRIs of my brain and spine and a lumbar puncture, but there was no evidence of this inflammtion. My sypmtoms are just like MS but I am told it is not that. The numbness and tingling is almost gone but I have muscle aches and stiffness which means I have to walk with a stick. I decided to try a gluten free fiet, 2 days go and will keep it up for 2 to 3 months to see if there is any change.

My grandmother died from bowel cancer, which I read can be linked to gluten intolerance. I also have excema, asthma and hypothyroidism.

Ally

I have been diagnosed with fibromyalgia. Three years ago, after gaining 30 pounds and the high blood pressure that went with it, I got off of Elavil and Zoloft. I found out I was gluten intolerate (through saliva tests) and got off of gluten products. I lost 35 pounds and feel so much better. I still have some pain but it is usually associated with weather changes, fatigue, or stress. I also found that the gluten intolerance was causing elevated levels of cortisol which in turn contributed to the sleep problems I’ve had for years. A product called Seriphos has helped keep the cortisol levels in check. I’ve been off of Seriphos for several months now and I’ve had a terrible flare up. I believe the cortisol is a key factor in the muscle pain and sleep problems associated with fibromyalgia. Why doesn’t the medical community know about these things?!!! It’s soooo frustrating!

So much great information in the comments! I really hope people are reading your stories and looking to diet as a possible answer. It really is too bad that doctors aren’t suggesting food intolerance but doling out prescriptions instead.

Ally,
Sounds like you have a lot of symptoms (and family history) related to gluten. Have you been tested for celiac? I would love to hear your progress with the gluten-free diet.

Kim,
Depending on what antibodies the test was looking for, you could be gluten intolerant and it wouldn’t show up on that test. I do believe you should still try the diet. There is still a lot that the medical community does not understand about how food can cause different types of reactions. One example in my own family is my nephew. He got 2 different types of tests for milk allergy and both were negative, but he reacts to milk in very obvious ways (physical symptoms like feeling cold, red cheeks, runny nose and cough, and also behavioral symptoms). If my sister had gone only by tests, and not by her own experience, she would be quite a miserable mother with a miserable child!

Keep the comments coming… this is really helpful!

Hi. I have a 10 year old son. Since he was a baby he has always had very foul smelling, watery diarrhea. When he was a baby I noticed that he didn’t grow much after he was 3 months old. When he was 1 year, I finally found a doctor that would listen to me and tests confirmed that he had the bone age of a 3 month old. A pediatric endocrinologist diagnosed him as having a vitamin a and d deficiency and just told us to over compensate his diet. At 3 he was diagnosed as having ADHD but was unable to take medications for it as they all caused him to be a zombie. At 8 years old, he was still having very frequent accidents, so we were referred to a pediatric gastroenterologist. Blood work and scopes were done and he was diagnosed as having irritable bowel syndrome, which does run in our family. He recommended immodium. He had the screening test for celiac and a biopsy done when he had the scopes and the results were negative. During the last week, he’s been complaining of upset stomach, heart burn, and feeling like he wanted to vomit. I have been considering trying him on a diet that works well for those with IBS. A friend of mine told me that it sounds more like he has celiac disease than IBS. The IBS diet would be bad for a kid with celiac. At 10 years old he is getting embarrassed by his accidents. Could the tests have been wrong? Could he have been misdiagnosed with IBS? I really want him to be happy and healthy but I don’t know what to do or where to turn.

My dad, aunt, grandmother, and myself have all been diagnosed with osteoarthritis, IBS and Fibromyalgia. My sister was also diagnosed with IBS but she passed away at 19 before she was diagnosed with anything else. Could all of this be caused by gluten? Now I’m really wondering.

Wow.

I think I’m in a backwards category. After years of being sick, I did the research, and asked my doctor to check me for celiac disease. I found out after that that my aunt had already been dx’d, and from there relative after relative found they had it, too, and have benefited from GF.

When I went GF, and I mean STRICTLY GF (I also can’t eat rice or potatoes, or bananas) I started feeling better and dropped 30+ lbs, but then the pain issues came back in force, and brought their friends. At this point, eliminating other things from my diet isn’t helping at all (and “safe” foods are so darned expensive and limited, I feel like the lady in the store- well, I have to eat SOMETHING!), and the joint pain (with no swelling or redness) the constant migraines, excessive fatigue and hurting to the touch are getting to be quite debilitating, and I’m only 34. I feel 94. I’m already on a medication commonly prescribed for FM for something else, and it isn’t helping at all, except to ease depression.

I am going to talk to my dr about fibro and tmj, but at this point, from all I’m reading, I don’t know how much help a dx will do for me.

I was diagnosed with Fibromyalgia last March. Soon after, I noticed that when I didn’t eat wheat products I felt much better. The doctor (I’ve since switched doctors) administered the blood test to test for Coeliac Disease, which came out negative. I continued to maintain a close to wheat free diet since then anyways because I felt better. Three days ago I was diagnosed with Coeliac Disease. While this doctor did not administer any test, she explained that since Fibromyalgia and Coeliac Disease are highly correlated, I have a family history of Coeliac Disease–which is genetic, and it alleviates my symptoms, I can be diagnosed with the disease. In addition, to test for Coeliac disease, you must consume gluten regularly for thirty days (hence why my original test came out negative). My doctor felt that it was unnecessary for me to go through that kind of pain for a diagnosis that would surely come out positive. I wish this kind of information was more accessible to people. As I said, my first doctor (and many others) dismissed my concerns out of hand.

I will add my experiences, and I hope I can understand what to do.

I quit nightshade (arthritis), dairy, soy, sugar, and am now treating a severe yeast overgrowth.

I have Fms/CFS/Myofascial, Hypothyroid, TMJ, dry mouth, and a whole list of other stuff, including IBS since April 2008 that Is VERY painful. I don’t know what to do or what I can eat!!!!!

I had a colonoscope, removed two polyps, sprayed a 10 cm area of infection with antibitiotics, “look elsewhere for pain”, and NO FOLLOWUP APPT. I couldn’t believe it.

Now I am looking at a second opinion at Baylor in dallas.

But meanwhile I don’t know what to eat. GF,SF,SF,DF,CF,yeastfree diet, what else is left? I am IBS-C. I don’t know what to EAT. I swear not to eat anything, but I get hungry. I am taking probiotics.

I wish you could email me with advice. I’ll keep checking the board.

Thanks
Vicki from North Texas

Hi,
I am really glad to find you all. I was diagnosed with fibromyalgia several years ago, but it seemed to get somewhat better on its own for quite a while. I also have restless legs syndrome and until recently had sleep apnea so these became my main concern. I thought maybe losing weight and getting rid of sleep apnea was a sign that I could really get healthy again. But now I have been aching more than I have in a long time and it has occurred to me that maybe I have been eating differently and that is the cause. I will try the elimination diet. I feel badly for ELS (12 -9) who did the elimination diet and is still in pain. Have any of you tried Sam-E or coq10 enzyme? I have used Sam-E for a long time, it usually helps my mood and my joints but not this time (much more pain). I heard about enzymes from my dad (he sent me an article about enzymes and fibro) so I got some today. I would be interested in what your Dr. recommends for you. I hope your pain is better. It is worth mentioning that my sister already has her family on a gluten free diet because she has a problem with it and so does her daughter who is autistic. Actually that is how my dad found the article about enzymes they are apparently beneficial for both autism and fibromyalgia. They did not specify coq10, I just wanted something familiar and available locally. Best wishes to everyone.

Thank you everyone for your comments. It really saddens me how much people have suffered from food intolerance without knowing it. I hope that those of you who made comments will return here and give an update.

A note about vitiligo: I had it as a child, but it stopped spreading. I do believe it was connected to my celiac. My grandfather also had it and I think he suffered from celiac — he had major depression, a bit pot belly, and stomach problems.

To Karen, whose father passed away:
It is sad to think of those whose lives were cut short because no one knew about the effects of gluten. I have a friend whose father died in his 40s of stomach cancer… my friend has recently been diagnosed with celiac (only because he became aware of it through me, not from a doctor). It’s not hard to make the connection between him and his father. I believe my uncle’s life was cut short because of celiac disease also. This is why it is so important to me to continue raising awareness.

I have a similar story. I was diagnosed with Fibromyalgia at age 26 (10 years ago) and developed pretty severe myofascial knots, depression, anxiety — the whole list of symptoms. I finally figured out the gluten and dairy connection almost two years ago.

I felt a LOT better but not perfect, so I decided to eliminate eggs, refined sugar, soy, alcohol, caffeine (even cut out decaf, which has trace amounts), MSG (!!!!! the worst offender in my book), chocolate, coconut and corn. Basically I eat meat, vegetables, rice and alternative grains like quinoa. It’s incredibly hard but I feel so much better! Probably 90 percent of my muscle knots have cleared up. My energy is so much better. Another epiphany came with the improved quality of my sleep and reduced brain fog and that detached ADD feeling. When I cheat with any of these foods, I really feel it the next day — and sometimes for days, depending on what I ate.

I tested positive through Enterolab for two copies of the gene that predisposes for gluten intolerance, which means that I am likely to experience pronounced gluten intolerance. (My brother did, too, and he has suffered from mood-related and digestive issues his whole life.) It’s also the gene — DQ1 - that predisposes to the neurological effects of gluten. I had numbness and tingling, neuropathy, major headaches, a “buzzed” brain feeling, DEFINITE depression and anxiety the day after “cheating” with gluten — (even if I didn’t know that I had ingested it; I would feel terrible and go back to check labels and sure enough!).

The former head of the San Francisco CFIDS group said that every single person she knew with a CFIDS-related diagnosis who had tested it with complete elimination and then challenge was gluten intolerant to some degree. Every single person!

I called the national FM group and talked with a PhD on staff there to explain my experience, my conversations with others, and my Internet research. I asked what dietary studies had been done. She said, “none that I know of.” I suggested informal surveys of fibro people, maybe through a survey button on their site. She sounded skeptical of the diet connection and I can’t blame her. I was VERY skeptical for years — so much so, in fact, that I resisted the diet for probably 7 years, despite hearing people recommend it. I felt like, “hmmm - they must have something different than what I have” and ignored them. I took lots of drugs and not one helped past about 6 months.

It took hearing the head of the CFIDS group say that every single person she knows stuff to shock me into trying it. I’m so glad I did. I’m off every single medication and I feel better than I have in years. It’s funny (or actually not so much) — my naturopath tells me that she encourages her patients to try GF/CF and they almost always resist. I guess it’s not so surprising, given that MDs receive about 20 hours of nutritional training in med school these days and we have been trained by the vast majority of them to discount dietary factors.

But, you figure — if Celiac and diabetes can create such severe symptoms, why not other foods in other people?! It just makes sense that this is the tip of the iceberg, particularly since we have engineered and re-engineered our food so extensively and our bodies can’t possibly keep up in terms of evolution. Who knows what the mechanism is — it could be an immune response or pharmacological reaction that we have yet to discover, but no one can tell me that these foods are ok for me. I think of it like vastly differing side effects among people to drugs, many of which are derived from plants, just like gluten.

Check out research by Dr. Maios Hadjivassiliou of the United Kingdom. Also, doctors in Italy, where Celiac disease is practically an epidemic today, are doing some interesting leading research on this.

I’ve considered starting a survey or petition to the National Fibromyalgia Association just to see where it might lead and encourage people to look into the possible link.

Thanks for this post and I look forward to reading more in the future.

Dear CC,
I have emailed you directly also:
I will try to offer you some advice for your desperate situation.
First, where do you live? You should try to see a doctor who is aware of celiac disease and its effects. I can try to help you find someone. You should be tested for celiac disease first. Depending on your medications, however, this test could be falsely negative. It could also be negative if you are gluten sensitive, but don’t have celiac disease, which is a specific condition of the intestine. But if you do test positive, you will have an immediate answer and the treatment is a gluten-free diet, including all medications.
If you test negative, I believe you should try a gluten-free diet anyway. Gluten sensitivity, even without it being “celiac disease” can cause all the symptoms you are describing. What have you got to lose? You can get a lot of help with the diet from this website and other resources. Check your medications also for gluten. If you have any concerns about these medications, or about not taking them, please talk to your doctor. It is important to be 100% gluten-free.
Let me know how else I can help.
Good luck,
Alison

Really interesting reads on this site. I feel lucky that I’ve been able to deal with my d’xds of MS and Celiac (2006)as they occurred w/i 2 months of each other. The new d’xs are Fibromyalgia and Osteoarthritis. I’ve come back to the net for sites like these to find out about their connection to gluten. My conclusion since I’ve been GF since 2006 is that the gene that makes us susceptible to autoimmune disorders has a “cascading” effect.

Being the non-scientist that I am…just a human observor…I’m starting to believe that after the 1st a/i diagnosis, others can follow at a quick clip. In fact, if I meet a newly diagnosed GI patient, I deliberately choose to NOT discuss my other problems…it’s too scary for someone who is already overwhelmed.

And, I’ll go whole-hog here, I think this GI problem is a huge problem for certain populations in America. I’m from a very rural, isolated area of Eastern Kentucky. And, yes, our gene pool isn’t as diverse as it should be! Rugged Appalachians from years past, even now, tended to keep to their own communities and travel was seriously restricted. As such, this hardy group generally from Northern European populations, hasn’t had a significant DNA shift. We’re like a little incapsulated European community. I know there will be those who disagree…but, for we natives, we know it is true.

So, my theory…a great deal of study could be made of this unique population which probably has a higher percentage of GI individuals than other places. Next theory…the problems associated with this area…shorter life span, high depression rates, toothlessness (due to calcium malabsorption??), and a high neurological illness rate could be associated with A LOT OF UNDIAGNOSED CELIACS, etc.

Any thoughts?

Joan and Kycabo,
Have you considered other food intolerance in addition to gluten? From some of the comments above, and from my own knowledge and experience, people with celiac disease or gluten intolerance often have other sensitivities as well. Common ones are dairy, soy, corn and nightshade vegetables (potato, tomato, peppers, eggplant), but it can be anything.

Kycabo,
Interesting theory! I think you’re right that doctors should do a study of that population. I wonder… maybe it comes down to the diet of that region though — lots of gluten I assume!

Lori,
Wow. I’m sorry you had to go through that and the lack of awareness of some doctors is astounding. I’m so glad that you posted your story for others — you will be helping someone out there going through the same thing. Thank you!

Hi!

I was diagnosed with Ankylosing Spondylitis (a form of arthritis affecting mainly the spine) about 8 years ago. I was told then that there are a number of “non-skeletal” complications associated with the disease, including IBS, fatigue, psoriasis, canker sores and others.

In the last year, I have had menstrual irregularites (now on the pill to regulate), hypothyroidism (now on synthroid), anemia (on iron pills), and extreme abdominal bloating (no definitive answers yet).

I’ve always suspected a sensitivity to either wheat or gluten and have followed a gluten-free diet for about 3 weeks. The bloating has disappeared (other than the odd “mistake”, where there were hidden gluten ingredients), the arthritis is subsiding, and I feel great!

The research that I’ve done indicates that ALL of the problems I’ve been having can be explained by a gluten intolerance. I don’t believe I’m Celiac, but intolerant; I will be tested anyway.

I had been under the impression that my arthritic condition was responsible for my other symptoms, but I now believe that the arthritis itself is just one symptom of a much larger problem: gluten!!!

My mother and grandfather both had AS, which fits into the genetic component of gluten intolerance.

As a hint for people who are trying to adhere to a gluten-free diet: I found that I missed it a lot less if I didn’t try to replace it with “wheat substititutes”. Trying to replace your morning muffin with a gluten- free variety is a road to disappointment. I found it much easier to switch to a delicious fruit smoothie and would add greens and carrots to it as well. I also found that many “ethnic” cuisines, such as Indian, Vietnamese, Japanese, you name it, use very little gluten if you make it yourself and is ridiculously delicious and easy to make. You won’t miss gluten a bit if you can be adventurous and don’t just try to modify a North American diet.

Good luck to all, I think we’re all on the right track!

Pam.

hmmmm, I was diagnosed with fibro in 1996 and have eliminated MOST of my symptoms… and am writing about it… I definitely think there is a connection… for me, I found out that I had candida, and have at times successfully and other times unsuccessfully eliminated wheat from my diet. I definitely feel better when I do… I was told that rye was a good substitute, but I love pasta and rice pasta just does not taste great… nor does spelt. And I would love to learn more about the gluten free diet…

holy moley! I have a ton of those symptoms! That’s amazing! Hopefully after going GF that I can recover fully, most of those are begining to go away. I have only been GF for about a month.

The blood tests for gluten intolerance are completely useless. You can have gluten intolerance for over a decade and still test negative. I had a gluten blood test and it showed either negative or borderline. However, I had a STOOL TEST through Entero Lab (http://www.enterolab.com/Home.htm) which showed gluten sensitivity. The reason that this is much more accurate is that the gluten antibodies are created in the digestive tract and don’t necessarily get into the bloodstream. I also had the gene test (you take a swab sample from the mouth), which showed that I have inherited a one gene which predisposes me to celiac disease and another which just predisposes me to gluten sensitivity. That means both my parents have a least one gluten sensitivity gene. While I do not have fibromyalgia, my sister does, and I think she probably has inherited a predisposition to it as well.

I have been fighting chronic fatigue for years, and also have been diagnosed with irritible bowel syndrome. Mainly I never seem to feel rested, no matter whether I get a good night’s sleep or not (but it seems I rarely do for one reason or another). Always feeling groggy and foggy headed. Recently I tried cutting out gluten from my diet. (I tested negative for gluten intolerance/celiac but my doctor told me that 30 to 40% of the time the test is wrong.) It’s been a little over two weeks and it doesn’t seem to have helped. Should I keep on it, should I try going on an anti-candida diet on top of the no-gluten diet, or what? I’m also thinking about going to a homeopathic doctor. I’d like to get to the bottom of this after all these years.

Hello everyone,
I’m trying to figure this gf eating thing…I have fibro and osteoarthritis I have started eating gf but I’m still so lost will someone help me?

Thanks for your help,

Melissa

I had horrible health problems check all the boxes for fibro and suffered for years. I say many doctors and received a diagnosis of fibro. I took muscle relaxer and a vitamin regime and felt a bit more functional, but no where near normal. One activity a day with my son took all the energy I had for the day. I went gf and felt better in a matter of days. I started dropping weight ( I looked puffy all the time), the dark circles under my eyes diminished, my hair and nails are growing, I heal better, i have not gotten sick, ibs is gone, bloated abdomen no more. I could not believe it. After 1 1/2 weeks I stopped take all my pills and felt better every day. After 3 1/2 months I am still improving every day. I mowed my lawn, went running, chase my son all these things I haven’t done in years. I fully believe I never had fibro but rather gluten intolerant or celiac. When I have tested this by eating gluten on purpose I either vomit or have to spend the day in the bathroom and I get flushed, sweat, and my abdomen swells about 2 inches.

I cannot believe how this has changed my life. Also discovered my sons ongoing health problems responded to GF diet. He has the genetics for celiac and if give gluten swells, gets tired, and bathroom issues.

I tried it because I had nothing to lose and there are no side effects. For me in 2-3 days I saw a different/felt and by 1 week there was no looking back for me.

Good luck!

Years ago I was diagnosed with chronic fatigue, then 6 years ago after open heart surgery I was diagnosed with fibromyalgia, myofascial pain, and severe depression just to list a few of my problems. About a month ago I was ready to end my life. I went to a Dr. out of my health care plan and finally got some answers, instead of drugs to cover up the symptoms. She did blood, saliva, and urine tests and found out that I am gluten intolerant, I have candida, an enlarged thyroid, adrenal problems, and estrogen dominance. She thinks that most of my health problems are because of the gluten. I have been on a gluten free diet for about 4 weeks and cannot believe the difference in how I feel. She also has me taking magnesium, progesterone, B12, iodine, and natural supplements. After reading about gluten intolerance I truly believe MANY, MANY people are really suffering from this, not fibromyalgia or chronic fatigue.

This is my first week gf and I already feel better. I have experienced bloating, blurred vision, fatigue,an irritating vocal tic (which started about 4 years ago) dizziness, numbness of toes, etc, etc, etc. Thank God for the internet which led me to wondering about gluten. My regular morning meal for several years was an 8 grain bagel.
My doctor did the blood work and I was also depleted for Vit D. She put me on 50,000 IU per day for a week and then once a week for 8 weeks. I am now on just a daily dose of 6oomg plus calcium and my opthomologist has recommended I-Caps twice daily. Between the gluten free regime and the vitamins I finally see improvement.

I have read every comment on this site and thank you all.

Anna,
Thanks for your comment — I am so glad you have found the website helpful and I hope you will post again about your and your family’s results/progress! I hope you all feel better soon (and I hope gluten is the cause of all the problems!!). GOOD LUCK!

Wowee Anna! I’m so happy that you are already seeing progress! Sounds like you have embraced the diet with a positive attitude and also with determination. Let’s see if I can answer some of your questions…

Cross-contamination is a real concern and you could have gotten sick due to it. Everyone is different — some people react very strongly to cross-contamination, others not at all.

Whey is dairy, not gluten. And Butterfinger Bars are gluten-free (except for Butterfinger Crisp)!

Natural or Artificial Flavors could contain gluten. If it were derived from wheat, it would have to say “wheat” on the label. If it were derived from barley, it does not have to be declared so on the label. However, according to the book Gluten-Free Diet, A Comprehensive Resource Guide (2006) by Shelley Case, it is almost always declared as “barley malt extract” or “barley malt flavoring” and for this reason, natural and artificial flavorings do not have to be restricted in the gluten-free diet.
You still must keep us posted! I love to hear this stuff!

Christine- I just checked in to see if Alison replied to me- and THANKS girl!-(Alison) I WILL be in touch- I REALLY appreciate your thoroughness…just got my delivery from triumphdining.com
http://www.triumphdining.com/products/gluten-free-and-celiac-diet-survival-kit
(can I plug? -No offense, I’m so new to all this)
and felt like a FOOL realizing WHEY is not gluten-related-DUH!

I need to put your website as an icon on my iPhone, seriously! As you are a LIVE person, able, experienced, and THOROUGH. I couldn’t WAIT to see your response on the “flavoring question”. I have already begun notes on it, to which I hope to get back to you soon on…

ps- I already enjoyed PF Chang’s Gluten free menu on our weekly date night, and even educated my local Baskin Robbins on their gluten-free selections!

I’m relieved about Butterfinger, as our local Dairy Queen (mostly GF) has been my staple as hunger has finally gained its presence back in my life!!!

MY tummy growled the other day, and I nearly broadcasted that! I can’t believe the difference lately!!!

ANYHOO CHRISTINE (forgive me, I can be rude, a writer by nature can be distracted in length, at times) FROM WHAT I KNOW AS A MOM and also fellow “IBS” sufferer-

“Incubation” periods are 1-3 days- you can suffer the consequence of an exposure to anything between 1-3 days. Personally, I get it within 5 min-1 hour of food exposure-

You could most definitely have a bit more tolerance, but still suffer the same just within days later- Do not be fooled- your body will let you know, it’s just a matter of how in-tune you choose to be with it!

I have had digestive issues since birth. It’s my normal. So I have come to deal, and get focused on, other matters concerning my ongoing health problems.

DO NOT ignore your gut. I have finally learned it’s THE KEY to your health! If you KNOW you are messing up, GOOD FOR YOU for admitting it! If you KNOW you suffer within day/s afterwards, well then HELLO, you have a solution!

I noticed my 2 boys ALWAYS got sick on Tuesdays each week. I’d count back 3 days and BOOM, SUNDAY- CHURCH. PACKED NURSERY. And there you have it.

Count back 3 DAYS, and as little as 5 min (for me) and usually you will know the culprit.

Don’t give up! Stay strong and determined. Find GOOD substitutions. You are not alone, and we all have weak moments. For the sake of your health, remain strong in the constant battle for “food-discipline”! Your body and mind will thank you, though you may not hear/feel it always “)

Sincerely, the “over-commenter” to this thread-
Anna

Thanks “)
And before I begin my “rambliah”, follow this link to an amazingly well done article, fellow womens’ health sufferers~

http://www.aolhealth.com/condition-center/chronic-pain/autoimmune-diseases-symptoms

Good news for our son, his reflux disease continues to be his only ailment- that’s it. His allergy panel from biopsy came back negative for wheat, etc. (My heart goes out to you moms with kids that do have this experience).

Gotta’ tell ya’- Our daughter just got reviewed this week by an ENT specialist
(it’s been a health nightmare in this house)!
She needs tubes, but the doctor also wants to get to the underlying issue of her problem, so will do a blood test to check for wheat, dairy, soy and egg allergies.

After asking me if there are allergies that me or hubby suffer (Uh, yes) doc literally closed the door and promised to deny this statement: He said, “Watch these kids with their grains. For your son, where he reacts in his gut, and your daughter, in her ears, it might be that they have an intolerance to wheat as well. And the blood test for wheat may result in a false negative. So diet could possibly change everything.”

NICE! HONESTY! CLARITY! Unbelievable. Closed door or not, that was a bit informative, dont’cha think?

I digress: We enjoyed a great date night last week (me and hubbs) at PF Changs. (via triumph dining’s restaurant guide). It really was amazing. I felt full, sans the pain, so we went back last night, and well…

Something got messed up as I got home, vomited, and my stomach suddenly popped out as if I had 3 months left of a pregnancy. Even my 7 yr old was like, “Whoa mom! Look at your belly!” Then he lifted his Pj’s and stuck his out to make me feel less of a freak for the moment!

I called the manager today as I have had an extremely rough day. I explained how impressed I was with the service, how comfortable they made me feel, and how we even returned in hopes of a “repeat” experience.

I also explained that I noticed my plate had their Logo, so I knew they took Gluten seriously. He (Eric) explained his own allergy issues, looked up our visit in their system, and apologized as I recalled each detail. (Even the fact the server almost confused our meals because “the coloring looked different from the usual g-free scallops”) Um HELLO, that was my clue and I didn’t even catch it. Instead I WOLFED down the most delicious tasting meal I’ve had in months, and I’m paying for it now.

Eric encouraged us to come back, explaining their kitchen practices (we covered cross-contamination, the fryer, the surface, you name it, they have it together over there) Then he took down my address, as he is sending a most generous certificate to use upon visiting again. He even requested we call ahead so he knows we’re coming, and will have our table ready and would like to meet us in person (and spoil us even more, perhaps?)

Eric also suggested I stick with the Singapore Street noodles like I did the first experience- Fine, but bummer, as those scallops were UNBELIEVABLE.

Hats off to Chang’s and the response to my call! Seriously. I’m almost feeling better (not, but I hope to soon enough).

In my former life (no, not a believer in that, but fine if you are) I was a food critic. My absolute favorite thing is eating out and discovering “the best” of things at various places.
I never order the same thing twice unless I know its “the best” and there’s no comparison otherwise.

Ha-rumph. I’ll have to let go a bit and stick with what is safe and force my children into ordering exotic things I wouldn’t make myself at home (that’s basically my rule). Vicarious living- some parents do it through sports, I’ll have to do it through food “)

There’s four of them, odds are in my favor! (Well maybe of the two who aren’t visiting specialists like their mom) Ah, life.

Until again!

Hi there

I am from New Zealand and been doing a lot of web surfing via Google today, with the latest topic being “corn intolerance in relation to fibromyalgia”, and have been scribbling away into a school exercise book, as physical written participation keeps things in focus more. I have covered a fair swag of topics, relating to arthritis, IBS, and fibromaylagia - all linked up in amazing information.

I have greatly enjoyed reading the responses to your initial article; can understand the case of the poor woman wondering what she can eat, and not being able to afford the expensive products that are gluten-free. Been there, doing that!

Some of the first gluten free breads I have tasted seemed pretty yuk anyway. I would rather just skip breads altogether.

I have been trying to live around fibro since Christmas, 2003. And last year, I discovered from a blood test that I have a wheat intolerance. That came with some expense attached to it, as I visited a lady specialist in CFS and Fibro at my local clinic. Unfortunately her charges don’t allow me to continue to visit her, but the blood test and discussions did help.

There hadn’t been any thought to test me for a gluten intolerance by my personal physician, touting rather a drug to help relieve things. I am pretty much gluten free as much as I can realise it; but in accommodating this regime, I have probably tried other solutions that bring me to the conclusion other foods are also affecting a tendency to more arthritic pain in my hand plus my IBS. In compensation, I have no doubt indulged in more of some foods I felt were okay, than I should have.

But I can go on and on. It is a pleasure to read in on all the blogs here, just by chance - as things happen for a purpose generally - of people’s ways of grappling with their problems and finding quite logical conclusions and positive results from going gluten-free. I was researching into corn, if it was a factor in fibromyalgia symptoms, as I have been trying corn rounds biscuits as a substitute for bread, with toppings.

Thank you anyway, sorry to be meandering but the fingers get a bit word-happy with being able to type fast. Just a chance meeting with everyone here, and it is a journey I am still trying to get to grips with, my diet and its consequences on my fibro, and associated peculiarities. Certainly I have an enquiring mind, and on here, the world is your oyster. A lot of information is so enlightening, when a 15 minute doctor’s visit provides not much, just the ability to try and push a prescription over at times.

Cheers and good luck to everyone from down under here, with spreading the word and alleviating folk from unnecessary pain and drugs and lack of advice.

I was diagnosed with Celiac Disease at about age 25. After being on a strict gluten free diet for a year or two, I became vibrant again. I have remained on a strict gluten free diet ever since.

At the age of 36 I became very ill again, but in a different way, and eventually was diagnosed with fibromyalgia and chronic fatigue syndrome. Again, I never went off the strict gluten free diet.

From what I understand, any of these illnesses weaken

Five successful months of being gluten-free! No doubt, at times it still accidentally gets me (like when I realize 1.5 hrs later that my body is in “rejection-mode”. No details, I shall spare you “)

Physically, I cannot attest to being any stronger or more vibrant, or much skinnier.

I was diagnosed (FINALLY) this week with Fibromyalgia and Chronic Fatigue Syndrome. -and would love to connect with Kristine.

I also thank Leia for commenting on sugar- I think I need to experiment with that. (I already ban artificial sweetener!)

My journey is a long tale, so to make it short… Well, I am a researcher who must see “the big picture” from “all angles”… so this is as short as it gets:

I’ve had 2 primary docs, 2 neurologists, 2 rheumatologists, a “voo-doo” doctor (God Bless him, he’s the one who discovered my gluten-intolerance) and countless opinions from friends and family.- Just these past 7 months.

One of each (primary/neuro/rheumo) along the way has diagnosed and prescribed meds for fibro. The other primary, diagnosed me with CFS.

I am finally (this week) “white-flagging” it, and surrendering to daily meds so that my quality of life can get somewhat restored. That’s it’s own “blog” someday…

In the meantime, I can’t thank Alison enough for having this article posted, as it clearly has “come to fruition” for me. Unfortunately, from all angles. But what a great resource your site is!

I can, however, sing praises to the fact that my gastrointestinal issues have finally been tamed from going gluten free! For the first time in my whole life! It’s an amazing thing to think that what I went through before was anything normal…(again, details spared for your sake)
And to think that I just may have some control over the severity of my conditions, (just based on my diet,) gets me psyched! when the hard days roll around…

So, my fellow “g-free-ers” I still need a little help.

In my own (somewhat made up, somewhat researched) opinion, if I read on a food label “processed in a plant that also produces wheat,”.. etc I think I’m home-free for the most part?!

My understanding is that there’s some kind of law requiring them to post that, and yet when a product switches to (i.e) peanut chocolate bar to non-peanut chocolate bar, they have to discard the “first run” from the switch-over anyways…

So while there may be the SLIGHTEST trace, perhaps, for the most part, wouldn’t it be ok?

Guess it all has to do with how sensitive the intolerance is? I’m pretty darn sensitive, and my body knows near-immediately when it’s got some gluten snuck in, so I’m real curious about what you all think, or what your experience/knowledge is…

Thanks! Be in touch!
ps- my son with the reflux is now only eating g-free cereal in the morning, (God Bless Chex for their new, various flavored line!), and it has cut the severity of his condition, and his med intake in HALF. Yay!

I am in my early 60’s and am now GF after years of illness. Have had to have section of sm bowel removed (Crohn’s disease), have non-absorption of bile (major problems with this). When I was younger, I was told it was “growing pains”, “female problems”, “nervous stomach” etc. I was anemic, very skinny (malabsorption?), emotional, depressed, tired etc. Yet, no one mentioned gluten intolerance EVER! Someone I met at a farmer’s market noticed my bloated stomach, even though I was skinny and suggested I look at Celiac disease. Even though I have tested negative (even some of the Celiac specialists are questioning the validity of some of the “gold standard” tests now) my GI Dr. suggested I go GF because my small intestine is so damaged, but he doesn’t think I have Celiac disease! I don’t understand the reluctance of most American Drs. to understand this problem. I tried to get my Primary Care Dr to look into this and brought him brochures from GIG and others. He still thinks it’s called Sprue and is something children get! I ended up with 2 years of 12-15 hr bouts of violent vomiting. It started happening every 6 weeks and gradually increased frequency until it was every 3 or 4 days. I had fistulas and abscesses internally. Finally had a blood test for Crohn’s and my numbers were the highest my Dr had ever seen. But that still doesn’t explain the causes of all this. I am doing better being GF, but I think I am still getting some gluten by accident. I just realized after reading some of these posts that I should be checking into the ingredients in my prescriptions. I forgot about doing that - even though I did know that at one time.
I have found in talking with others that Drs from Canada or Europe (or have been to medical school in Canada or Europe) are much more likely to look for a gluten intolerance/Celiac disease. Our medical schools are very backward when it comes to this.
I have quite a few extended family members who have various maladies, but refuse to look into GF diets. One of them goes by the Blood Type diet - can’t wrap my brain around that one.
This is an interesting site and I have found some beneficial posts/threads.
Thanks

I’m catching up here after a while and want to respond to the more recent comments…

Diana,
I think you bring up a good point that people don’t have to eat the wheat replacements! And yes, it is affordable to eat a gluten-free diet if you are not buying all those specialty products!

Anna,
Glad you feel better - sometimes you don’t even really that you had a symptom until it goes away. And, unfortunately, we celiacs or gluten-intolerant people tend to have more than one sensitivity, so that is definitely something to look into.

Yvonne,
I hope you return here and let us know how it is going with you… it is really awful that docs want to prescribe meds than think about food.

Kim and Kristin,
I’m sorry you were diagnosed with fibro after being gluten-free. I would like to know if you find out the cause. (Is it another food in addition to gluten?)

Leia,
I have been hearing a LOT about people needing to cut out sugar lately.

Maddy,
A good source to check for gluten in medications is http://www.glutenfreedrugs.com.

Debby,
Please do check in here again and let us know how it is going.