Dude note: This post was slightly updated on May 5, 2020 but was originally written in 2012. My…how time flies.
I may not make many friends with the gluten-free food industry with this post, but here goes nothing. And in no way am I telling you what you should do or how you should eat.
I just know the pain many celiacs continue to suffer through and I am trying to help the community in any way possible.
I am coming up on my
five 12 year anniversary of having celiac disease. Feeling mostly good now, but those early days were tough. In the first five years, I can count on one hand the number of stretches where I truly felt healthy. I have suffered stomach pain, severe exhaustion, brain fog, back pain…all of the classic celiac symptoms that I know many in our community continue to deal with.
And in that time, how many times have I eaten gluten? A big fat zero.
So I thought that maybe something else is going on…it can’t just be the celiac making me feel this crappy. Multiple doctor visits and test after test came up empty.
So then it must be the celiac disease. But if I’m completely gluten-free, why am I still suffering??
Then in late September 2012, my good friend InspiredRd said she was doing something called the Whole30. It’s a program where you eat nothing but whole foods for 30 days; the idea being your body can cleanse itself a bit instead of constantly being in fighting mode as it tries to digest processed foods.
The results for me were nothing less than shocking.
First of all, I lost 12 pounds. My main goal was not to lose weight, as I was only 163 pounds to begin with, but I did want to come down in the 150’s. It is absolutely amazing to me that my body shed that much weight simply from eating whole foods. Not less food. Just the right food.
Second, my energy level is much better than it was. Heck, I don’t even nap anymore.
And lastly, my stomach, while not perfect, is much improved.
I am now convinced that celiacs seriously need to rethink about the products they are buying and putting in their bodies. We need to get off “eating gluten-free” and replace it with “eating healthy”. That will give our bodies the best chance at healing and give us the best opportunity at a normal life.
Here is what my average eating day used to look like:
- Early Morning: Coffee with Splenda and a Kind Bar
- Breakfast: A bowl of Honey Chex with Almond Milk
- Lunch: Brown rice, fish and veggies, cooked with a gluten-free sauce
- Snack: Kind Bar (or some other gluten-free snack)
- Dinner: Gluten-free pasta with chicken, etc.
To me, that looks like a pretty healthy day. But why then did I always feel like crap? Why couldn’t I lose any weight at all?
Take a good look at the Honey Nut Chex ingredients to the right. 6 of the first 7 ingredients are pure crap. Is this the stuff celiacs should be putting in their bodies??
Now compare it to an average eating day now:
- Early Morning: Black coffee (no sugar)
- Breakfast: 3 organic eggs with sausage, asparagus, onion and mushroom
- Lunch: Fish and veggies, seasoned with olive oil and spices
- Snack: Almonds or a piece of fruit
- Dinner: A piece of organic chicken or steak with veggies
2020 Dude note: My diet, while not perfect, has stayed pretty much the same.
Two things to take note of:
One…I’m not exactly starving myself.
Two…I’m not eating “gluten-free” anymore.
Let me ask you a question: When you were first diagnosed with celiac disease, what is one of the first things you did? If you’re like me, you went to the grocery store and cleaned the shelves of all of the gluten-free items you could find.
“I can’t give up pizza!” Phew…I can buy gluten-free pizza.
“I can’t give up pasta!” Phew…I can buy gluten-free pasta.
“I can’t give up cookies!” Phew…I can buy gluten-free cookies.
You get the point.
The problem is, a large majority of the gluten-free food is absolute garbage. And many (not all) of the gluten-free food manufacturers are more than happy to feed us this crap because they know the emotional attachment people have with eating. And they know the intense fear celiacs have of losing their lifestyle as they know it. And they know the enormous profit they can make off of us.
They don’t give a shit about our health.
I’ve been to a few celiac awareness functions. But you know what? It’s not about celiac awareness. It’s a damn gluten-free food orgy. It’s table after table of foods that celiacs should not be putting in their bodies.But because it’s “gluten-free”, it must be good for us! Who cares if it’s twice as fattening and three times as expensive?
Look…we all deserve treats once in awhile and I am not saying you should never eat processed food again. As a matter of fact, I went out yesterday and bought some Udi’s Chocolate Chip Cookies to keep in the house.
2020 Dude note: Holy crap…I ate Udi’s. Must have been before I saw the light.
All I’m saying is to give your body a rest…even for 30 days…and see if it makes a difference. And if you are like me, you will never go back to the way you used to eat.
There is no reason we should be walking around in pain and simply accepting that’s the life of a celiac.
We all deserve to feel good inside.
505 thoughts on “Stop Eating Gluten-Free Foods”
I couldn’t agree more.
I’ve been doing alot of research lately. I’m determined to feel good.
It seems ALL grains and Dairy aggravate an already sensitive gut.
I am learning this lesson the hard way. It’s been a rough few weeks for me.
Lately, I’ve heard the Paleo Diet is good for people with Autoimmune Disease like Celiac as it lowers inflammation in the gut by basically removing all grain and dairy. No one told me ALL grain and Dairy also aggravate a Celiac gut!!!! . They only told me to go Gluten free. I’m now reading “The Paleo Solution” by Robb Wolf. Does anyone follow the Paleo Diet?
What I’m doing now is basically Paleo.
And here’s the rub Linda. Why the hell aren’t doctors on top of this. They just say “eat gluten free” and send you on your merry way. We need more than just gluten-free.
Man does it piss me off how the medical community does not give a rat’s ass about celiac disease.
The thing is though, most celiacs have absolutely no trouble with grains (rice, corn, amaranth, etc) and most celiacs have no trouble with dairy products either. So, even the savvy celiac docs do not discourage celiacs from eating them.
Nutrition and celiac disease–these things are not taught in medical school (my docs tell me) and so, we have to figure this out ourselves.
Learning what works for us individually is, unfortunately, part of the learning process. That’s why talking about it is so beneficial.:)
I wonder if Celiac do react to Dairy and other grains but always assumed they were “glutened”? Maybe instead of being “glutened” all the time, it really is the dairy and other grains? just a thought…
Oh yes, and people do use the word “glutened” for every reaction, hiccup, fart sneeze, bellyache, zit or headache. 🙂 when it may not be the case at all.
Truth is, when your gut lining is that messed up, anything can be an irritant .
Lactase is produced in the tips of the villi. If you do not have this enzyme due to villous atrophy, you’re essentially lactose intolerant.
When they grow back, digestion of lactose returns…. in MOST celiacs. See what I mean about this not being an all-inclusive healing pattern? Jules Shepherd is one celiac who has to be GF and DF, but can still have grains, for example.
And as I said in my other post, this is why I suggest giving up those food proteins to see if it helps the healing process.
I caution people from saying to the newly diagnosed “you NEED to be paleo, GAPS, SCD!!!, because in truth, not everyone does NEED to be grainless—and for the newly DXed, they already feel deprived and angry about the DX and what they view as “the limitations” of the GF diet, so having to go “whole 30 or paleo ” seems too stringent. This will cause depression and anxiety.
I think those of us who are a few years into this are more willing to try some further elimination of foods because we already did the “just go GF thing” and frankly, it just is not enough.
I was diagnosed in June after years of being sick. I was stressed or anxious to get the diagnosis. I was relieved. There was something wrong with me. I wasn’t crazy:-)
For me I don’t care what I have to give up anymore. I just want to keep the inflammation that comes with autoimmune disease under control and minimize my symptoms. The more I read the more i think Paleo or SCD is the answer. So iI am giving it a 30 day shot.
When I first was diagnosed, the also did the Lactose and Fructose Hydrogen tests. Both were negative. So, for me it isn’t lactose. From what my docotr told me it’s could either plain old cow’s milk or Casien which is in all dairy.
We will see.
have a great day
Grains dairy and sugar all inflame the body and aren’t good for those with autoimmune issues!! My dietician advices against them! Also says no point in grains!
My roommate started going on the Paleo diet a little over a year ago. She will typically go through periods of a few weeks where she eats a strictly paleo diet, then maybe a few days or a week of “cheating.” After that short “cheating” time, though, she says she feels so crappy that she absolutely needs to go back to paleo right away. She has a lot more energy, her skin glows, and even her itchy scalp issues have diminished a LOT (in part due to ceasing to use shampoo, but the diet seemed to help a lot as well).
Also, an added perk, she lost 60-70 lbs in a year without really adding a whole lot more exercise to her daily routine. Dang.
In short, I recommend it – plus, there are so many healthier non-dairy products that are easy to find now, like almond milk, coconut milk ice cream, etc. which I’m a big fan of, as someone who tries to avoid dairy.
Good luck 🙂
Look up the natural ingredient Carrageenan+inflammation on Google search and you will be shocked. Labs give animals Carrageenan to create a highly inflammatory state in their digestive system / intestines so they can test their pharmaceuticals. Also check out Cornucopia Institute list of organic foods with Carrageenan in them – dairy alternatives, dairy products, jellies, cheese, etc. A friend of mine’s cat was throwing up blood. She spent $$$$ at the vet with no conclusion. She researched every ingredient in the cat food – realized Carrageenan was a horrible ingredient – switched cat food & the cat got better! The three things I avoid like the plague are Carrageenan, Annatto (check out head banging in babies – and as a side note my elderly dad develops mental problems & vocal ticks acting crazy when he consumes any of these three things! I was going to blame it on age, but then I gook them all out and mentally / psychologically he’s back to his old self, not moody, not argumentative, happy…. by just deleting these items!)… and the third item is MSG – and see all Hidden MSG under various names like Spices, Natural Flavorings, Soy Protein, etc. See Cr Blaylock’s videos on MSG. By the third generation in rats the third generation were completely sterile.
I avoid these three ingredients, along with all thickeners that are often present in “gluten-free” foods – such as carob bean gum, locust bean gum… and of course, corn starch. I have a “sensitivity” to wheat and corn, so the process of elimination leads to eliminating these kinds of foods. When I found that “gluten-free” brownies were full of corn starch and thickeners I realized why I felt like crap after eating them.
I’m all about a whole food diet. Know what you are putting in your body all the time works best for me.
Love the blog. 🙂
For those of you who think you might be LACTOSE INTOLERANT, it might not even be lactose but the hormones in the non-organic milk. I thought I was lactose intolerant but discovered I could handle organic milk products. We can be intolerant to a whole slew of things in foods: preservatives, colors, additives, etc. Also, I was on progesterone shots when I was pregnant (a year and 6 months ago.) I had really bad acid reflux and had to be on medication for it. Upon further research I discovered that the synthetic progesterone (which is also in birth control) ruins your digestive system and (if on it for long enough) can make a woman estrogen dominant (which messes up the thyroid.) So some of your issues might involve getting your hormones back on track….
Also, did you know that for every Omega 6 food that you consume (grains, nuts, etc) you should be consuming an Omega 3 (fish, green vegetables)? Not doing so causes inflammation. So perhaps you all don’t have to go grain-free, just cut back.
Also, did you know that for every Omega 6 food that you consume (grains, nuts, etc) you should be consuming an Omega 3 (fish, green vegetables)? Not doing so causes inflammation. So perhaps you all don’t have to go grain-free, just cut back. I would suggest that all of you look into drinking bone broth regularly. You can get higher doses of Omega 3’s while healing your gut lining because bones contain glucosamine, which heals the gut lining (and helps with wrinkles as well!)
after having a root canal done in a training school ,and after taking forskolin for two mo. first of 2015 I started filling bad I was so gripie I couldn’t stand myself came down with candida in the mouth and gut and after that my lips and tongue swell after eating I had a senativity test done had blood and stool check all neg where can I get help
I think that is important to acknowledge (the part about newbies). Well said, as always, IH!
I agree, especially you’re last 2 paragraphs. This is the end of my 5th year as Dx. In the beginnings I was so sick for at least 3 of those years that when I tried Paleo and whatever healthy diets I failed with a big F. Newbies have to eat whatever GF food they can manage, even if it’s loaded with salt, sugar and refine foods. I found fruit helpful and lactose free milk. I couldn’t face any steamed veggies or salad. Now I can but it took four n half years to reach that stage. I lived on soup for ages then minced steak or chicken stews, well cooked. Not sure even now I could face a true Paleo diet even for 30 days, but it would probably do me a lotta good.
This is NOT true. Most Celiac patients do have problems with dairy or will eventually develop problems with dairy at some point. I have ran the gamete with my CD, I have been diagnosed since 2000. In the beginning, I had no trouble with dairy, or anything other than gluten…..fast forward 13 years, I now have leaky gut. I am sick everyday and have developed crazy multiple food allergies! WHAT? I was GF???? Turns out Celiacs might need to be free of foods that will cause problems later on long before they show reactions to those foods. SO, I would recommend, as a super savvy celiac, that newbies beware…..ALL grains are hard for a celiac to digest, dairy and sugar WILL take its toll on your gut. If you are a true celiac, try to limit consumption. I would never want a newly diagnosed Celiac to have to run the trials that I (and so many others, turns out) have ran to get to this point of knowledge. For now, conventional medicine has not bothered to include this problem that a large number of people suffer from. I believe that can change, it has to. After all, when I was diagnosed with CD….NO ONE new what that was, I couldnt shop for ANYTHING in a package and I was ALONE. For any newbies, I would recommend the care of a Naturalpath physician, at least this whole thing is on their radar and they can probably help you to prevent further damage. Good Luck to everyone out there.
Sorry, Shawna….grains and diary do not cause grief for most Celiacs. Many, including myself, can include a reasonable amount of both in their diets and go on to lead normal, healthy lives. I am also a diagnosed Celiac and nearly died 8 years ago….it was that close for me. I was at the extreme end of malnutrition. Yet……I can do small amounts of dairy and grains are just not a problem. If it’s a gluten free grain, I can digest it. I do have trouble digesting fats as I have pancreatic insufficiency for fats, BUT the grains are not a problem.
To add further…I have a total of 4 AI diseases because I went so long before diagnosis and yet, every single one of my inflammatory markers are slowly coming down and some have gone into the normal range. So this nonsense that everyone has to give up grains and dairy is just that…nonsense. All newly diagnosed and those suspecting a gluten problem have to figure out what works best for them and it’s going to be different for many.
What has gone crazy are the amounts of carbs that people ingest.
Yes, whole foods should be the core basis for everyone’s diet but there is nothing wrong with having a brownie or a cookie or a little ice cream, if they agree with you. People have a tendency to eat too much of it and that is probably the reason they get into trouble.
As for Naturopath’s……be wary of them as you would a mainstream physician. They like to load people up on supplements they don’t need and know no more than many about diets. I have seen them make major mistakes on people like the AMA so you have to do your homework with them also.
People need to relax about food. I can see why so many newly diagnosed are full of anxiety, after reading some information on-line about the GF diet. Certified GF oats will not kill you and having some dessert will not send you over the edge and make it impossible to heal. It still is going to take time to heal for everyone, regardless of what they eat in GF-land, but no need to make it worse and scare people.
Well said Gemini…thanks.
Gemini, I think that it awesome that you can digest gf grains and dairy. I wonder if this will always be the case. I sure hope so, it makes life so much easier. Reading through all of this stuff sure makes me realize that my CD is surely different from the nest persons CD! Having had CD for so long it sure seems like I run into a great number of celiacs who cannot tolerate dairy at all, good to hear you are not one of them. As far as gf grains are concerned, maybe once my leaky gut has healed up (however many years that might take) I might be able to tolerate grains too. I am very sensitive, and that has not always been the case…. I guess there are no absolute answers with CD.
I very much appreciate what you are saying, Shauna. After my diagnosis, I was still getting sick and reacting to what I thought were gluten free grains. It was only by eliminating them that I managed to live and be symptom free. Having this information available allowed me to understand what was going on and make the proper adjustments.
Censoring this information does not do service to celiacs who are sensitive and reacting to trace amounts of gluten via cross contamination. This is my life and I want all the information that is available in order to make an informed choice to heal.
I so agree with you Gemini! After avoiding so many foods and losing too much weight I went back to gf grains. BUT I am lactose intolerant and realized that was the cause of the continuing bathroom runs…Great that you are able to enjoy dairy! But some of us cannot.
Gemini, thanks for the info and encouragement. I have been almost 100% GF for 2 months. I say “almost” because I’m sure some gluten has sneaked into my diet. I started to get very sick to my stomach over 2 years ago after experiencing problems with my gall bladder back in 2010. My Dr. told me that is not uncommon in women over 40 and that I had to be very careful with my diet but mainly watch the amount of fat I ate and practice strict portion control (to allow my bladder to process foods and not exerted to the point of having another attack).
I did everything she told me but a year later started experiencing another set of problems. I was bloated and suffered cramps on a regular basis. I was tested for everything, including Celiac, H. pylori, etc. and everything came back negative. The Dr’s (primary and GI) diagnosed me with IBS… I sympathize with a lot of people that bash Dr’s. I’ve had very good ones that have been honest and have told me that they understand that an IBS diagnosis means nothing. They know there is a problem but can’t put their finder on exactly what is causing all the awful symptoms. My primary did suggest to get off dairy for 2 weeks to see if that would help and it did. It turned out that I’ve been lactose intolerant for a very long time. Now, I’m not sure if that caused permanent damage to my intestine (like cause leaky gut) but cutting dairy only alleviated 80% of my symptoms. The bloating still persisted. I never had a big belly and now it seems I can’t get rid of it.
I decided to go GF two months ago. Unlike many people that report withdrawal symptoms at the beginning, I don’t think I did. However, after 2 months, I am still experiencing some bloating and now all of a sudden, diarrhea. Grains have never been a problem but the only things I’ve kept in my diet are brown rice, garbanzo, black and red beans. I’m eating lots of veggies and some fruit, almond butter, pecans, almond and coconut milk, a vegan protein shake (which I take a couple of times a week) and no dairy at all.
Can somebody shed some light? Thanks!!
For whatever it’s worth, in the past six months, I’ve given up all beans, along with dairy, soy and corn. Has made a huge difference.
Beans can do a number on any intestine. Try to either reduce the beans or add some vinegar and cumin to the mix. Those help to break down the enzymes better and help you digest the beans in a less gassy way (though I am sure there will still be a bit gas). Give it a try. My grandma always told me to add those to anything with beans and cabbage and it works for us (those with GF and those without in the family). Good luck. 🙂
Also, did you know that for every Omega 6 food that you consume (grains, nuts, etc) you should be consuming an Omega 3 (fish, green vegetables)? Not doing so causes inflammation. So perhaps you all don’t have to go grain-free, just cut back. I would suggest that all of you look into drinking bone broth regularly. You can get higher doses of Omega 3’s while healing your gut lining because bones contain glucosamine, which heals the gut lining (and helps with wrinkles as well!)
Older women look up estrogen dominance. And everyone do some research on Candida infection. Start treating yourself for it. Cut back on sugar… Try to balance your body’s PH.
So I have been gluten free for the past two months. Major symptoms have dissipated as far as joint pain, insane head ache, mental fog, my “adhd” symptoms, some weight loss. Every now and then I will eat something that I am completely unaware that I am sensitive to and will throw me into a reaction as if I have eaten gluten. I came across this conclusion by simply paying attention to the food I was eating via tip that maybe I have a food allergy. I would like to get tested just for confirmation but through different medical research blogs they say after going gluten free it is hard to test for this. I absolutely can not go back to eating foods containing gluten!!! I feel like absolute djlsjsjdfjdl when an accidental occurrence has happened much less do it on purpose. Also intestine biopsy scares the crap out of me? Any feedback would be awesome!!!
Hi Carrie. It’s true…you need to be on gluten to get an accurate test. Total bummer I know. It’s a real personal decision that many in your shoes struggle with.
Personally, I’d want to know if I had a genetic autoimmune disease or not, but at the end of the day, you have to do what’s best for you.
Could NOT agree MORE! I’ve had chronic fatigue for 15 yrs. Never put the pieces together until it got so bad I was unable to work. Now I can not only NOT handle any gluten or wheat – I can’t handle dairy or ANY grains. I went from being perfectly healthy with lots of energy in 1998 to, since 2010, extreme weakness, exhaustion, multiple food intolerances / allergies. At this point my elderly dad is caring for me and I’m basically bedridden. Over the last 3 yrs the symptom that has come most recently is brain swelling from offending foods. One of them being corn of all things – and it is in EVERYTHING…. see Corn Allergy Girl if you want to thank God you don’t have corn allergies or intolerance. Gluten intolerance CAN turn into other food intolerance & allergies – MAKE NO MISTAKE ABOUT IT! I am on a Facebook page for Corn Allergies and the stories these 1,500+ people tell about how their health is progressively becomming worse and worse and they’re developing more allergies – or their kids are…. a lot of them are down to maybe five foods they can eat with salt if they can find a ‘safe salt’…. one woman has a daughter who can only eat vegetables from a neighbor who has agreed to grow her veggies for her…. these kids go into anaphylaxis, seizures…. they carry epi pens….. and every allergic reaction, intolerance, reaction of any kind can turn into anaphylaxis at any time. They develope airborne allergies to popcorn so they have to give up movies, going to Target or the mall where popcorn is popped, they have reactions at school if another teacher pops popcorn or if they use a mircrowave at work after someone has heated food with any corn in it – even corn oil or cross contaminated with hidden corn!. THIS STUFF IS REAL – Don’t your ever let anyone tell you that one thing cannot turn into another thing – once your body becomes inflamed it is VERY hard to get it to stop and prevent other things from going wrong. I would have never thought I’d be in the mess I am now. I used to work 70 hours a week, ride my bike to work & eat healthy. I appreciate this post because it encourages me to do what I need to do. I hope it encourages everyone to make the necessary changes they need to make before they get multiple across the board food inolerance / allergies & all sorts of symptoms & disease that seem to come out of nowhere.
I know this thread is three years old, but I’d like to put in my two cents: 1st penny is that when I was seen by an immunologist at Mayo Clinic, he was scrolling thru my genetic printout that NIH had given me, which had what they had termed a “detox panel”. He asked was I avoiding just gluten? I said I eliminated almost all grains. He did a double take and said, “if you’re already sick with ONE autoimmune disease, you’re too ill to be eating grains at all.” I protested, “but I’m tolerating the others!” He replied, “do you want to be well?” Of course I do! “Then why do you eat grains? Or is NIH that incompetent?” I said no one even asked about my diet there. He drew a deep breath and said, “There is no such thing as a safe grain. No gluten free this or that is okay if you’re sick with an autoimmune disease [Ihave familial non alcoholic autoimmune pancreatitis and porphyria]. So no grains EVER, no matter who tells you a little bit is alright or that corn isn’t an allergen [look at the corn derivatives folks] and that it doesn’t matter if that bacon on your plate ate non-gmo feed! None means None!” I walked out a changed person and I date my healing to that day 6 years ago. A word to the wise Folks!
You have touched on a couple important points. I finally found a doctor that thoroughly checks everything. I have spent the last 20 yrs. progressively finding tiny pieces out going from doctor to doctor but never feeling better. The doctor I currently see told me that once you have one auto-immune disease chances are you will end up with more. He had me do a lot of blood work, more than any of my other doctors. He had me do the genetic testing with “23 and me” and a mold test. He said he can tell a lot from genetic testing. Even based on my bloodwork he can pretty much tell what my genetic testing is going to show based on his experience. My first finding years ago was thyroid, then Celiac’s Disease, then Osteoperosis, then Hashimoto’s. So far he found my Epstein Bar is elevated and my body has 10 times the allowable amount of black mold. He feels the black mold is the source to my auto-immune issues. Some people carry a gene that cannot rid their body of mold if exposed. He told me that this is why I can’t get my Hashimoto’s under control. I was also close to going into adrenal failure. I am on an anti-inflammatory diet which includes avoiding all sugar, fried food, pork and organ meats, dairy, all gluten and corn products.
I am now juicing which is nice because 95% of nutrients comes from the juice of fruits and veggies. I would never be able to eat the quantity of greens in a day that I juice.
I also did genetic testing on my son and he does carry 2 out of the 3 Celiac’s Disease genes. Based on his genetics he has a lot of gut issues at age 11. I did the testing because i do not want my son to go thru what I have had to deal with for the past 20 yrs.
I highly recommend to anyone with auto-immune issues or just constant health problems that has not been able to get answers from doctors to find an integrated doctor who does genetic testing. My doctor has people from all over the U.S. To see him.
FYI ….. another disease that is bad is Lyme Disease. If your genetics are not great you will suffer. It is a very debilitating disease.
WOW = We just started looking at Wheat Belly, And have come to the conclusion we have to go to the next level. Have “almost” eliminated GF foods = and now you tell me cornfed meat is out too?
I have a major problem with dairy as well, since diagnosed I have given up all dairy as well as all grains except rice and corn. Still feel like crap.
Thank goodness I can eat diary, but if I eat rice, I get horrid seizures and vomiting. Most grains give me trouble so they are limited to once or twice a month.
I just head Cocount Aminos from Coconut Secrets is just like soy sauce and is Paleo legal. Picking some up on my way home for a stir fry tonight. just thought I would share.
I use coconut aminos all the time as a soya sauce substitute. We can hardly detect that it is different that GF soya sauce. We’ve been soya free since February and it’s made a huge difference in our household’s health.
I love it. Gluten Free Soy Sauce seems saltier than normal Soy Sauce to me. And, this was so light and pleasant. And, it also has no crap in it. That’s why I love the web. I heard about it on the SCD LIfestyle website. I am a fan:-)
One of the things I learned is that the cheapest soy out there…La choy…is 100% soy protein [ has other stuff] but is not a soy/wheat mix like so many of the high end brands of soy sauce. Yes, this is not the best for me by far but a little goes a long way. And the price really helps me on the budget.
Why don’t doctors tell us to eat this way instead of saying, eat gluten-free? Because, I wouldn’t have listened!!!!
Eight years ago, I was just looking for ways to survive and if you had told me not only to eliminate gluten, but to eliminate sugar, high carb foods, etc., I would have probably killed myself. (I’m not joking.)
Fast forward 7 years, and I am now eating a low carb diet. I did it because I was gaining, gaining, gaining. Not only did I lose weight, but I no longer had the sugar highs and lows and hunger pains. I don’t need naps in the middle of the day AND my depression has lifted.
With you here. Telling me to give up hot dogs was devastating and I maybe would eat a hot dog once a year. I’ve been craving donuts since I was diagnosed a year-and-a-half ago and before that I NEVER ate donuts.
It’s totally psychological, and if my doc told me I had to ditch all this stuff I would have lost my shit. As it is, I figured out how to eat all this “bad” stuff, but gluten-free. Now that I know, I can move on to whole foods and healthier options with the occasional gluten-free pie.
It really is different for everyone. I needed my crap to know I wasn’t giving up everything that had ever tasted good. But I know what’s healthy, and what is not. You may be different. In fact, of course you are!
Exactly. My son was diagnosed nine months ago, at the age of 10, and if you’d told him he couldn’t have anymore treats on birthdays, anything at all at parties, etc, he wouldn’t have bothered going GF (I would have cooked properly for him, but he would’ve snuck things every chance he got). Having to go GF is devastating enough for a child, to also tell them no more grains or dairy at all? Forget it!
A gluten-free diet is lean and healthy as long as you don’t eat the replacement food. I was diagnosed with Celiac Disease 2 years ago. Since then, I have lost 35 lbs. and have never felt better in my life. For the most part, I eat whole food only. I am also allergic to corn, which is found in most of the replacement food. I read somewhere that up to 40% of Celiacs are allergic to corn. I also have an intolerance to dairy products but sometimes ignore it because sometimes I can’t find enough food to eat.
What you just said, about the medical community being no help, is so true!!! That’s why I went back to school, at 23, and from all the feeling-like-crud that has caused me to take so long, I’m still determined to finish. We need people in healthcare that will tell us something helpful, not just some unintelligent comment like, “well, just don’t eat gluten”. What they told me left me in a state of pure ignorance about how to avoid gluten until I started doing a lot of my own research.
Thank you for the post about eating whole foods. It’s so much work for those of us who know better, that sometimes a friendly reminder is quite appreciated.
Not so much that the medical community doesn’t care as they are just as brain washed about eating processed foods.
It’s not just gluten free the doctor’s are not caring about, it’s good, preventative health care in general. I can get drugs on my insurance for practically free, but if I see a naturopath to help with prevention, they don’t cover a thing.
I am glad to see your blog as I have been trying a gluten-free diet to see if there may be a change, as I have not been diagnosed with celiac disease as yet. But I have always been one to try and eat whole foods rather than processed. I am baking my own bread and making almost everything from scratch, so we will see how it goes. But seeing all this gluten-free food makes me wonder who is profiting? Evidently not us!
I agree that processed gluten free foods are still going to make you sick.
I tried the Paleo diet and that worked best for me.
I eat dairy now and I use pure Stevia sometimes. Sometimes corn chips or sweet potato chips.
Don’t use Truvia, it’s made by Cargill and has made some people very ill. – it’s not 100% Stevia and is not safe. Google it.
I like your blog, thanks.
Thank YOU Karen…
I have been Paleo for a year January 14 to be exact. I for the first time felt so well and dropped 2 dress sizes without trying. Since it was coming up to Xmas I bought a couple of Gluten Free treats, all pastry based…steak & kidney, suasage rolls, mince pies…after the steak & kidney pie I was in agony just after half an hour of eating it. I thought perhaps it was the pastry. weeks later I had a couple of sausage rolls and didnt feel any pain. So the upshot is having eaten all the GF foods I had now feel awful. I know Paleo works for me and I feel so much healthier inside. I am not a Coeliac but started a Gluten Free diet when diagnosed with an under active thyroid. Paleo works for me and I dont feel it restrictive at all, there are some very good cookery books out there, with some good ideas for making food interesting. This I now know is something that will have to be a way of life for me, it makes me feel healthy inside and out.
They have found many cross-reactors with gluten, which includes dairy, yeast, corn, rice, sesame, potato, tapioca, soy, teff, sorghum, egg, amaranth, quinoa, buckwheat, Rye, Barley, Spelt, Polish Wheat, coffee, hemp, chocolate, millet, and all hiddden dairy proteins (casein, whey, etc.). They’ve also found that some people who have healed their gut after avoiding all these foods, have been able to add some of these foods back into the diet. I’m not sure how Vegans can still get a complete protein source. I’m still researching that because I can’t eat fish at home due to Sis’s allergies by smell. I react to all animal and avian. She can’t eat chicken at home due to my allergies by smell. lol However, I mention Vegans because many Vegans usually have no issues getting protein on a normal Vegan diet, bit with food restrictions, this changes. B12 becomes problematic too due to yeast being banned. I’ll be on suppplements. Lastly, I have an Uncle on the Paleo diet, but they still don’t know what is causing his issues. Paleo diet not a cure for him, but might be almost better for me.
Paleo is great, Gluten Dude. That is exactly what I was going to recommend as I read your article, but I see what you’ve replied to Linda. The fact is, doctors are not on top of this because the physician protocol is drug/symptom based. It is a reactionary approach to health – so, not healthcare system. It’s a sick care system. Your many observations and frustrations were incredibly similar to those experienced by some friends of mine who also have found incredible benefits from reducing inflammation and oxidative stress through Protandim. For each of them, the changes have not only been life-changing, but life-saving. You may know a couple of these friends of mine to whom I refer; Sean Croxton of Underground Wellness and Terry Shanahan, personal Paleo advisor/Crossfit coach/trainer to Olympians, professional athletes, and celebrities. Please visit http://www.NaturalSolutions.PrimerimeABC.com, and feel free to contact me (915-525-0407) if you would like me to put you in touch with Sean or Terry. I’m sure they’d be glad to give you a call. Congratulations on your enlightenment and improved health through nutrition!! If only medicine and big pharma would catch on, now!!! Be well!!!
I was curious as to whether you would be willing to give me a good rundown on what you eat in a normal day. I’ve dealt with all the typical symptoms of celiac disease for a few years now, and have just started my new diet without gluten and it. is. tough.
I feel like my stomach is eating itself from the inside out, no matter how much i eat. I just want to feel full and have energy! If you dont have the time i completely understand. You seem very willing to help others out with this struggle and its awesome!
The mainstream medical profession is a three wheeled car… with square wheels. It ignores chronic conditions like systemic candida and various other conditions too because it doesn’t fit in with their simplistic medical training that treats the symptoms but not the causes.
With gluten the case is magnified, coeliac disease is like a circus trying to confirm a diagnosis. Many doctors are satisfied with the common ‘negative’ results.
The main problem now is for mainstream medicine to keep up to speed with all things gluten and to recognise the problem of ‘cross reactives’ that the body mistakes for gluten. So many coeliacs don’t know about cross reactive foods.
First off i have to say… Gluten Dude you rock!!!
I am so happy to find this blog! Your info on this and other things have been so helpful!
My 16 son was dx Celiac 2 mos ago after suffering stomach pain, joint pain, fatigue, bumps on shoulders and arms, lack of weight gain, tingling and numbness in fingers, etc. for over a year. GI doc said to go gluten free for life and avoid dairy for a couple of weeks (something about it being a cross reactor- he didn’t put much emphasis on the term) and sent us out the door. The first 2-3 weeks of being gluten free he felt great! All of his symptoms were gone within a couple of days. We were so relieved! The day he was diagnosed i went shopping and bought everything i could find in the way of GF packaged foods. Happy dance right in the grocery store isle!- he wasn’t going to have to do without the normal food desires of a teenage boy! Brownies, pancake mix, cookies, crackers, pretzels, cake mixes, panko (yes-GF panko crumbs!)etc. I overloaded him on baked goods and snacks in the first few weeks experimenting and seeing what was good and what wasn’t. I was feeling optimistic about this new lifestyle change. Before Celiac he had been used to eating bread with almost every meal, so now we were trying the GF breads. Kinnikinnick hamburger buns were tolerable so i was making him hamburgers frequently (almost daily- for lunch or dinner). This was of course before i had learned the meaning of the dreaded “cross reactors”. Week 3 my son had ice cream when out with friends, next morning stomach ache, so of course we attributed it to dairy(and maybe it was- who knows).
He continued to stay off dairy, but the next 1-2 weeks his symptoms started coming back. Each time he suffered stomach pains we figured it was from cross contamination since he wasn’t eating any dairy. I had been reading every book i could get my hands on since day 1 and scouring the internet for information about Celiac and being GF. Other than being cross contaminated and not being fully healed i couldn’t figure out why he was still, on occasion, suffering (although i did suspect a reaction to soy once from a non-dairy “butter”). I turned into a very “gluten paranoid” mother (how could i not?)! I had already cleared out the pantry of any gluten flours, cereals, and anything that could create a poof of gluten dust. I created top shelf’s for GF area, bought new utensils, plastic containers, designated GF kitchen towels and sponges, etc. Each time he would have a stomach ache we would rack our brains trying to figure out the source, we replaced his chapstick, toothbrush, and even bought a new xbox controller thinking there must be gluten on them from his gluten eating days. I just couldn’t figure out the source of his “cross contamination” as i was being so ultra careful with food prep and my hands were dry as a bone from constant, and i mean constant, hand washing.
After more research I finally came across info on “cross reaction”, OMG! here are those words again, the words i didn’t think were important that the GI doc had mentioned. (i will leave that for readers to look up on there own as i don’t want to give inaccurate information- there is some great you tube videos on cross reaction and being gluten intolerant, explained well, with helpful info). Little did i know that eating all the GF packaged foods laden with rice, corn (corn flour, corn starch, zanthan gum, etc), and more (which are processed and of course not good for you anyway, anymore than the same foods which contain gluten) could be the reason he was having “gluten symptoms” again! I felt so guilty! Here i was giving him foods i thought to be “safe” and all i was doing was hurting him!
We have now eliminated all grains and are continuing to refrain from dairy, but are hoping this is only temporary. This has not been easy as corn is in absolutely everything other than whole foods, and even some whole foods [such as corn fed chickens or i have recently learned of a “spray”(made from corn) that is used to coat or clean meats, something to do with retaining color i believe (i now wash meats and chicken by soaking in cold water with a little Braggs cider vinegar)- YES, i am “gluten (and now corn) paranoid”] My son has been off all grains for 2 weeks now and is feeling better, other than he is hungry most of the time. He has had a couple of episodes believed to be from his mouthwash that, come to find out, contains a corn directive (who woulda known!).
I have spent many nights in the past couple of months crying behind closed doors as this is all so overwhelming. My son is doing good on an emotional level, he is patient and would never consider “cheating” because the physical consequences are too great, or i should say “aren’t too great”! He is just waiting for the day he can have a soda(contains corn if if no corn syrup) and ice cream again (God i hope that day comes!). I am not planning on my son having an intolerance to corn and corn products for life(Ha, if it were just that simple for me to just will it away!), and god please don’t let it be that he can never have dairy again!!! If i knew then what i know now i would have completely avoided all GF labeled foods, other than whole foods giving his body a chance to heal. I hope i didnt create other lifelong food intolerance from not avoiding all grains and such to allow his gut to heal.
My suggestion now, although i am very new to this (2 mos) would be to stay away from the GF packaged foods, at least for the first 30 days, giving your body a chance to heal. I am hoping after time he will be able to enjoy a goodie (the GF brownies-every brand we tried- are delicious!) from time to time. I think people are under the false sense of security that the GF labled foods are somehow good for you, and that is just not the case. Celiac or not, whole foods are the way to live a healthy life. Now if i could just get my son to eat vegetables!!!
It is not a doctor you should talk about celiac and gluten free diet but qualified nutritionist or dietitian. Doctors are taught to prescribe chemical treatments and diagnose, not to teach what to eat. Nutrition is a science and only nutritionists are qualified and have enough knowledge to help with diet.
My doc said the same thing – don’t eat gluten and you’ll be fine in a couple of weeks. NOT. Six months later, on antibiotics for SIBO – small intestine bacterial overgrowth. Apparently very common in people with celiac disease. We’ll see…
I agree. Going gluten free did help at first , but 3 years later , you start getting lazy. I am going to go back to diet I was on orignally. if it has more then 3 items dont eat it.
I switched to the Paleo way of eating about 2 months ago and I am feeling great~~well, MUCH better. It is a strange adjustment though; I keep thinking I might be doing something wrong since it is veggies and meat only. I like it, it makes cooking much easier! Funny thing is, when I have people over, they love my simple cooking and they too want to get back to basics.
I needed to gain weight, but it has been slow, one pound a month on average. I still think I need to be fatter (still super bony), but I feel pretty darned good.
My favorite meal is any fish, a plate of broccoli, and a sweet potato. I love the colors and I can eat till I am stuffed. I eat any time I wish and I never get fat and my energy is awesome compared to 6 months ago.
Best of health to you and Thank You Gluten Dude!
You are quite welcome…
I am doing basically Paleo. I had to take matters into my own hands. I go into my doctors appointments telling them what I am doing and what I want or don’t want for treatment because I learned through my journey and treatment of celiac disease that your typical doctor doesn’t get it and more importantly they only work out of their little square box trying to put a Band-Aid on everything instead of finding routes causes. I now see a functional medition doctor and their nutritionist who understands the “whole” body and treats the whole body with whole locally grown organic food and supplements to and eliminate problems instead of further masking health issues and never really feeling better.
Celiacs have to dig deep and look into cross reactive foods that are still keeping them sick such as corn, rice, dairy, yeast, potatoes, soy, millet, sorghum, hemp.
For some of us we have to take this difficult step and eliminate these foods (as if being celiac were not hard enough) at least until your gut heals and with the help of your functional medicine doctor and nutritionist decide if any of these can and how brought back in.
I could of never counted on my general MD to get me to this point but at least he is interested in what I am doing, I’ll give him that.
OH BOY can I relate to you! I too have gone the Paleo Path, but it’s was HARD at first. I was not accepting my circumstances well and felt like a whining little baby for a couple months; “WHY ME?!?” But I am past it now and beginning to enjoy what healthy feels like.
The only thing I can count on my doc for is to have test run. I then take those tests and go to other folks in the natural medicine field and keep pushing forward.
I love this site; we can all support each other though difficult times. I learn so much from everyone here!!!
Have a great day!
I know this is so many years later, but here’s my story:
I ate the toxic recalled Chobani yogurt. (My local grocery store failed to take it off the shelves. I am one of those immuno-compromised people, and got violently ill. Couldn’t keep food down, or “in”, for 3 months straight. droped down to under 100 lbs. I was subsequently diagnosed w/Crohn’s & colitis, in addition to Celiac’s & diabetes I already had.
Do you know how the paleo diet affects these other conditions? Gastro has told me no leafy geens, cruciferous vegetables, or berries anymore, no grains, no nuts or seeds, & to avoid most other vegetables, as well. At my wit’s end, as all diets are diametrically opposed. Also supposed to avoid red meat & fats, due to heart disease & high blood pressure/high cholesterol. Hot mess, even though have always lead healthy lifestyle/diet, & maintained healthy BMI.
That is so scary to get sick from our food supply. Sadly it happens a LOT! That scares the hell out of me more then having autoimmune diseases. I am on the FDA food recall list, but what if, like you, you are the first to get sick. I am sorry! That is horrible!
Here’s what I think . . . You have to try each diet and see how your body feels after what you eat. That’s ultimately what we all have to do. If you feel like doodoo after eating corn, don’t eat corn. Once you are done doing all the foods, you can start living again!
I tried many diets, what finally worked for me is eating simply meat (mostly chicken because it is less expensive), veggies, and a little fruit and nuts. I could not do raw for along while, but have been slowly introducing them. Cruciferous veggies are the only ones that settle well (for me). I have to eat (cooked) 3/4 veggies and 1/4 meat or I can’t function. It is a strict way to live, but it is working for me.
Be as well as you can!
So sad to hear of your horrible bout triggered by the yogurt. Sounds like it brought out the worst of all your ailments.
It’s no wonder you’re totally confused. Your G-E is telling you NOT to eat almost everything you SHOULD be eating! With all those restrictions, you might as well be on an IV! You need to heal your gut, not starve it. And your GP (and/or cardio?) is selling outdated myths about meat, cholesterol and heart disease.
The thing they don’t seem to be telling you is that MANUFACTURED and PROCESSED food is what your body is rebelling at. You don’t have to go paleo, or vegan, or totally raw, or totally organic, but you need to go REAL. (And non-GMO, because of the glyphosate, which means nothing made from American soy, corn, sugar beets or CANOLA)
Find a “functional nutrition” practitioner (most are not MDs; many are chiropractors)
Re Crohn’s / IBS: I suggest you look into Food Babe’s (Vani Hari’s) first book. And her site has many sensible recipes that might be safe for you.
As for Type 2 diabetes: I recommend getting my book. “EX-Diabetic”.
it’s based on principles of functional nutrition. It’s packed with facts, and the recipes are totally free of gluten, sugar, wheat, corn, and dairy.
Whatever you do, please AVOID any food that is labeled Low Cal. Low Carb, Healthy, Natural, High Fiber, Whole Grain, Gluten Free, Sugar Free, or Diabetic. Also any literature about “managing” “controlling” or “living with” diabetes (for example, the recipes in “Diabetic Living” magazine are total trash.)
I wish you the best in finding your way out of the labyrinth of lies, diets and drugs you get from medical “experts”, dieticians and nutritionists. You can do it.
Awesome advice imho 😎 Brian. Another book I liked was the China Study.
Hi Gluten Dude, Susanna from Brazil. Yes! Paleo is the way to go. I was diagnosed when I was 42y.o. Now that I am 46 I look and feel better than in my 30’s. Paleo saved my life. Grain free beats the hell out of gluten-free. BTW you look good… hope you feel amazing!
I feel the same as I look…good days and bad.
YES! My docs told me to “Just go gluten-free. It’s easy now with all the products.” No! I had no symptoms of Celiac disease. It was a fluke I was diagnosed. He was telling me I was extremely malnourished! I was at the store every day buying fruits, vegetables, and lean proteins. GF processed has zero nutrition. I’ve actually never eaten better, and for the first time in my life I am running because I feel so good. Hell no to the GF. Whole foods all the way (with a peanut butter cup once in a while…gotta live, too).
still agree with this today!! great blogpost..thank you
Reading this for the first time and it makes me sooooo angry, being diagnosed a couple years ago, and no one telling me about Paleo or whole 30. I too, got the “gluten free” speech and was sent on my way and couldn’t figure out why I still felt awful and gained weight and was bloated all the time. When I told my PCP I saw a nutritionist and was doing Paleo she said it was “unnecessary”!!! She almost seemed to be insulted I went to a nutritionist and inferred I was wasting my money!! Needless to say, for the first time since I can remember I feel like a normal human again!! The medical community needs to get their shit together when it comes to this subject!!! Imagine all of the people walking around feeling horrible just because they are doing what their doctor told them to do!!!
Hmm, food for thought. LOL. I actually couldn’t find “gluten free” when I started, so I was only eating meat and fresh produce. I’ve gotten lazy over the years and I think that may be my problem. Thank you for being you and putting your thoughts and journey out there for others. 😊
While you’re researching, check out fixyourdigestion.com and the facebook page “fix your digestion”. I wasnt’ diagnosed wiht Celiac’s, altho I think I may have it, but I did test positive for MANY food sensitvities and diagnosed with a leaky gut. This site and doctor, Dr. Jillian Sarno Teta, can coach you thru a gut restoration, even by phone. She’s phenominal!
As for eating paleo…. I think what you could also talk about is eating clean. I never refer to how I eat as “healthy” because the public has no clue what that really means. “healthy” junk food from Whole Foods is still junk food.
As for food restrictions…. dont’ think you can’t do it! Most people who go thru a period of time, usually at least 30 days, sometimes more, find they can successfully reintroduce some of the offensive foods back into their diets. What worked for me was focusing on what I COULD eat. I’ve introduced a couple of foods back in but, honestly, I felt so good with that very restricted list I seldom stray from it even now.
good luck and good health to all!
I have been living Paleo for a year. It’s not just a diet, it’s a lifestyle, because there are sleep, play, stress, and sunshine exposure guidelines that go along with the food aspect. I was diagnosed with hypothyroidism, adrenal fatigue, imbalanced hormones, and gluten intolerance 4 years ago. I gained over 40 pounds, was exhausted all the time, and forgot everything. Working with my naturopath and taking natural thyroid meds helped a lot, but the weight still defied my best efforts. I started living Paleo and lost the weight within 3 months. My skin is clear for the first time since puberty, I have more energy, and my sleep is improved. My only regret is not doing it sooner.
I eat paleo and I am a CrossFitter. My favorite paleo apposite fastpaleo.com. There are many more out there online I use too. Paleo is good for you even if you don’t have health issues now.
Thanks. I’l check it out.
Another meta-analysis was recently published that finally went ahead and measured the ultimate end-point, death, and low-carb diets were associated with a significantly higher risk of all-cause mortality, meaning living a significantly shorter lifespan. http://www.care2.com/greenliving/low-carb-diets-and-coronary-blood-flow.html#ixzz3KgZOurSp
yes to Paleo that is. Tons of veggies over anything, Just finally got off all grains for a 6 week trial. I think my skin is better after one week! I was gluten free one year, and was eating fermented grains via a local bread company of millet and quinoa. NOW. the trial begins…..
Yes, so much marketed as GF food is modelled on unhealthy regular food. What is the point I eating stuff that is low in nutrients, or where the nutrients are difficult to digest when your body is already having trouble getting the nutrition it needs.
I guess I have been privileged to have a doctor who encouraged me to look at the nutritional value of my food, not just eat GF. He also encouraged my quest to develop recipes for decent GF bread and pastry – not just look alikes filled with gum and starch.
Consider yourself blessed to have a good doctor. They are few and far between.
My doctor was a great blessing. I went to him for a second opinion about my thyroid because I wasn’t convinced about constantly upping the dose of thyroxine. After doing a complete medical history, and load of blood tests he started me on a program that sorted out the thyroid issue and stabilised it, identified the gluten problem, identified a range of allergies, and taught me to manage myself. Yes, Dude, a real blessing. One of God’s gentlemen!
Well said Dude! I’m glad you feel better with your new lifestyle.
I agree. There is way too much crap in gluten free foods. However eating whole foods won’t work for a lot of people (like me) due to food sensitivities to those same whole foods.
I’ve been reading a lot lately about food sensitivities. It seems a Leaky Gut causes most food sensitivies in Celiacs. And, from what I read, if you heal the Leaky Gut, you also eliminate most of those sensitivies and can eat them on a rotation diet(every four days or so).
I am working on this now. I am on an elmination diet now no GRAINS, NO nuts, no diary, no eggs, no soy, no citrus fruit, no corn and no nightshade veggies expect potato and sweet potato for two weeks to start. But, i think I am also going to be Diary free for life as well.
hoping for the best…
Yep…I’ve given up grains, soy, dairy, corn and of course gluten. The only rice I’ll have is when I go out for sushi.
Brown organic rice is ok with my system in moderation. Might want to give it a try. 🙂
Ditto for me, Jen.
Brown organic rice is loaded with fiber and stabilizes blood sugars.–something I find I have trouble with when I try to go totally grain free.
“Brown rice is more nutritious than white rice because it has only the outer layer or hull removed from the grain. In contrast, white rice is more refined and has several layers removed, which reduces its nutritional content. Brown rice is relatively high in soluble fiber, which makes you feel full for longer and reduces the chances of over-eating. Fiber also promotes intestinal motility and regular bowel movements, as well as balances blood cholesterol levels. Compared to white rice, brown varieties have a lower glycemic index, which means less dramatic impact on blood sugar levels and more balanced release of insulin. Brown rice contains many essential minerals, especially manganese, omega-3 and omega-6 fatty acids and most of the B-vitamins. One cup of brown rice contains about 215 calories, 5 grams of protein, very little sodium and no cholesterol.”
Read more: http://www.livestrong.com/article/557482-what-are-the-health-benefits-of-brown-rice-and-steamed-vegetables/#ixzz29nQzfXp0
I have to reply to my own reply here 🙂
I have gone 12 days without even the brown rice and I am NOT having any blood sugar issues at all. Yaay!!
Maybe when I tried the primal diet before, I was still too ill. Who knows.
All I know is, I had serious withdrawal giving up all grains and dairy and that to me, speaks volumes.
Let me add that PCMA researchers have found that Vegan diet reversed type II diabetes in most cases, and protected the kidneys. The preferred Diabetic diet actually damages the kidneys in all cases. So, if you were to take out all animal and avian, you might even get rid of diabetes and low blood sugar. In my case, going 97% Vegan helped me immensely. I just have fish once in awhile. My blood sugar quite crashing, and I only have fish once a month about.
I absolutely agree with you – the attachment is purely emotional (and maybe a bit cultural). But what good is it if we keep eating foods that are bad for us just because “everyone else is doing it”? It’s absolutely stupid. We should all be in tune with our bodies, and only eat the things that make us feel good – in the long run. Kudos to you for following the Whole30 and feeling better!
I hope you don’t mind that I included a box of your cookies in the picture at the top of this post 🙂 🙂
Thank you Gluten Dude. I too suffer greatly from pain etc. I switched
from Gluten Free frankenfoods to whole foods as well and it has made a major improvement in my life…I lost 27 pounds but more than that the structure of my body has changed…I am just leaner…it is hard to explain. However, Sandra, not all whole foods are created equally and for some of us it has to go even deeper. My list of do not eats also includes all nightshades….that while technically are whole foods cause a lot of problems for me. I have neurological issues that doctors cannot decide are related to celiac or multiple sclerosis or both so I am in limbo with the medical community. That is what made me do my research and decide to make myself feel better and not take all the meds they keep trying to throw at me! It is all a mess!!!
Morning Dude, I’m in total agreement with you, I live mainly on fruit, veg and meat, I buy processed foods now and again. I have back ache constantly the doctor took some xrays and its arthritis. I’ve given up the wine as it was getting far too easy to consume too much, so my tipple of choice is gin and slimline tonic……50 calories a glass 🙂 Ive also been giving the 5:2 diet ago, I dont buy into the whole dieting thing, but this made sense and steadily Ive been losing a couple of pounds, Im by no means over weight but since hitting my 40s its beginning to show around my middle, I’m also walking the dog every day, she likes that and so do I. So pleased youre feeling better.
Thanks Amanda. I have never heard of the 5:2. I will definitely take a look.
This is IMHO–I would like to add for anyone considering this plan:
Fasting of any nature for NEWLY- diagnosed celiacs is not a good idea. I am just clarifying this for those still suffering from malabsorption, okay. I am not arguing about whether fasting is” right or wrong”.
Their bodies are already starving. They need to eat.
Sorry IrishHeart, I should have been more clear, I was diagnosed 38 years ago at the age of 5. And all that was available then was bread (which came in a tin) and two types of biscuits sweet or savoury. So I grew up not having anything other than fruit, veg, meat, fish etc. I make all my own sauces. I have the odd twinge, which I don’t always put down to gluten. I’m lucky I don’t have a problem with dairy or anything else.
I was not trying to be argumentative, honest 🙂
Yes, the celiacs I meet who were DXed as children tell me about “white rice matzo” as being all they had here in the states.
Made for pretty lousy sandwiches .
And no one knew how to make good GF bread from scratch until Bette Hagman published her books.
You guys are the true warriors!
Best wishes to you, Amanda!
Not much upsets me lol.
And my mum used to force feed me liver, which actually I now like. I’m also British and only moved here just over 3 years ago 🙂
That’s where I am. New to all of this. Unintentional fasting kind of comes with the territory in the beginning once one realizes the connection between eating gluten and being ill. The last thing I need to do is lose weight though. That’s difficult when the fear of food lurks behind every meal. Still, hubby and I were just talking last night about eating fresh foods and just having the gluten-free options on-hand to keep from starving in a pinch (starving is easier than eating poison but certainly can’t be healthy while malnutrition is still such a factor).
It’s difficult in the beginning of this journey since it seems like a roller coaster ride of feeling better and then NOT and not having a handle on “what did I eat this time?!”. Very frustrating but I do agree that fresh food is much healthier than the gluten-free processed foods.
Still trying to navigate to a healthier diet without becoming topsy-turvy. It’s definitely a process. There are some articles out there that say to reduce fiber intake during a flare. Seems like the flare is pretty continual so far except for the occasional “AH” which, just gives me a glimpse of the good life yet to come. Can’t live on broth and juice forever – I’m hungry and ready to move on to live an active life.
I suppose learning to listen to your body is a key factor in intuiting when to transition to different levels of eating. So far, it’s been quite the boondoggle.
When I talk to newbies, I always say go with plain whole foods and no dairy for the first 6 months. Why? because Celiacs have trouble with lactose at first and because I know full well they are going to want the GF “replacement foods” as comfort.I do not blame them one bit. I wanted them, too.
But then, I started reading labels and realized they are full of empty calories, sugar, carbs and a bunch of unpronounceable words.
ANYONE would benefit from avoiding processed foods, alcohol,
MSG and junkie stuff. But for a celiac, it is truly a “win-win”.
If I want a treat, I make it myself. Elana’s Pantry has many “paleo” goodies that do not include gums, starches and extra crap.
The gut lining takes YEARS to heal and anything we can do to stop the inflammatory response–it a wise decision.
The hardest part for me is finding something for breakfast. Eggs and I do not get along right now….baked IN things, okay; cooked alone? nausea. No clue why as I am not allergic to them.
Glad to see you are still feeling wonderful, G dude!
Sound advice Irish. I hope people heed it.
Irishheart—-you could possibly be having the same problem our family has—-we cannot tolerate eggs from chickens fed a wheat or other gluten grain diet. Sounds crazy—but it’s totally true! We have self-tested this over the last year with regular grocery store eggs (made us REALLY sick), brown omega 3 eggs (we got really sick when they added more wheat to the feed), homegrown eggs, very expensive organic eggs. The ONLY eggs we cant eat in massive amounts are eggs from corn/soy fed chickens. I did MASSIVE amounts of research online and calling companies and it was worth it, because I really thought we would have to give up eggs too.
It’s not because of wheat feed.
I can eat them baked IN things or as a frittata.
I can’t eat them just boiled or fried.
It has to do with the cooking temperature, the hubs surmises (he’s a chemist and that makes sense to me)
If I were truly having a problem with eggs, it would happen no matter how I cooked them, right? right..
Based on your theory,however, if I ate the eggs from chickens eating massive amounts of soy and corn, I’d be even sicker. I can’t eat soy. I am intolerant of it (I am not alone; apparently many celiacs are)
Any chicken farmers I know ( that’s a whopping 3 of them LOL) does not feed them soy because they say it is bad for them. I guess there are various opinions about chicken feed.
Hon, there are many people who seem to think that gluten can somehow pass through a chicken into the eggs. This is not possible.
They poop it out.
If you are feeling better eating eggs from only corn and soy-fed chickens, that’s great. I applaud you for figuring out what works for your family! Good Momma:)
But I assure you, if gluten were passed through to a chicken’s egg, eggs would be banned from the celiac safe food list.
Eggs do not contain gluten as far as we know.
If you find any scientific evidence to support this theory, I’d be most grateful if you would share it with me because this discussion comes up frequently on another celiac site and believe me, I have researched it to death —and found nothing.
Like I said, I KNOW it sounds insane that a Celiac could get sick from eggs based on what the animal is fed, and I know it’s not gluten. But other proteins or lectins are getting through—-to milk, meat and eggs. There is a large community of us who do react to gluten grain fed animal products. I wonder if science is even there yet to be able to find what protein or whatever it is is actually getting through.
I don’t have any research articles per se to share with you, but I do know that Dr. Rodney Ford out of Australia does subscribe to this theory—-that what an animal is fed certainly can affect whether we can tolerate a food or not.
This theory is pretty much as controversial as the coffee gluten cross reaction connection—our bodies think that coffee literally is gluten, and react just like we ate a big donut…lol!
“This theory is pretty much as controversial as the coffee gluten cross reaction connection—our bodies think that coffee literally is gluten, and react just like we ate a big donut…lol!”
and that is all it is….just a theory.
I was wondering IH, this theory has absolutely no scientific proof obviously, that is why it is a theory, however, it does not seem impossible to me, that if one has gone as long as we have without a correct diagnosis, that the body/brain could react to non-gluten grain….like a knee jerk reaction, not damaging the villi but perhaps just wanting it out of there. “Oh No, here comes a grain.” and then the reaction is similar to being glutened.
And, I’m not sick for 14 days, once it is out, I’m ok. Or, it could be all of the sunsets with mai tai’s. (just kidding), I don’t tolerate fruit juice very well, but if anything is gluten free it is rum anywhoo, I’m going to lose my train of thought. for me I cannot discount this theory. We will never know for sure.
I ordered paleo bread from Julian’s bakery, and had no reaction other than, spit, poo-ie, spit spit…..I can’t swallow this crap. I would die choking before celiac would terminate me!
so, NO BREAD, just go kill yourself. just kidding, an east coast expression, which I know you are familiar with, not sure the rest of GD’s following are, but if ya’ll are reading this don’t take it literally.
thank you very much
Anything is possible, I guess.
I took out all grains again to see if inflammation would die down in me and I am going on this premise, based on many others telling me it worked for them. Sometimes, we take a leap of faith.
I just do not believe the “cross reactive” theory because there is no
science behind it—- but the people at Cyrex labs would have you believe it. If they would allow someone to validate their claims and show the evidence, then maybe I would reconsider.
When someone says they have a “gluten- like reaction” and so everyone should stop eating or drinking a certain food or beverage, I feel this is a bit misleading. My gluten reactions are strong, violent and provoke brain symptoms. They last for weeks because that’s how gluten works in a celiac’s body.
So if someone has gas and develops the shits, does it mean “hit by gluten”? No, not necessarily. It could be any number of things, like additives, sugars, too much fruit, greasy food and MSG, etc.
I feel yucky, nauseous and bloated and get a stomach ache–and later end up in the loo—from eggs and GF toast, but I do not think this is a “cross reaction”.
I eventually figured it out–I can tolerate eggs baked IN things but not cooked plain –as in fried or scrambled with water. Turns out, baked in something has a less concentrated allergen (they just published a report on this —that kids with egg allergies can eat them baked in things) and that could be why.
Oddly, I do not have an egg allergy. I know, I was tested twice. IgG and IgE. Weird, I know.
See what I am trying to say?
Do I think some celiacs may have issues with all grains? Yup.
But the vast majority do not.
Comes back to the same thing for me–and I suggest this all the time when I talk with newly Dxed people:
How old were you at diagnosis? If it’s past 40, you’ve got some healing to do and it may take years.
How many other food intolerances do you have? The only way you can know this for sure is to take out the foods that are USUALLY problematic for people with damaged guts and add them in ONE at a time, a week apart. And eat ONLY that food that day.
For example, if someone thinks brown rice is a problem, eat it all day long and see what happens over the next few hours.
If you eat it with sauteed onions, mushrooms, chicken, corn etc.,
you cannot possibly tell which food is causing the problem.
If you want paleo bread that won’t make you hurl, 🙂
Her stuff is good!
Hi again Irishheart 🙂
You said: “I just do not believe the “cross reactive” theory because there is no
science behind it—- but the people at Cyrex labs would have you believe it. If they would allow someone to validate their claims and show the evidence, then maybe I would reconsider.”
Just keep in mind that there is no true scientific evidence showing how toxic aspartame is either, but there is plenty of evidence ‘on the ground’ so to speak among people who have had horrific reactions. I totally agreed with your comment above until one year ago when my true Celiac symptoms (which have never been gastrointestinal) would NOT go away no matter what other food I removed from my diet! I never considered coffee food, so that is the one thing I kept in my diet. When I had first read the warnings of Cross Reactivity, especially about coffee, not only was I furious, but refused to believe it. What I am thankful about, is that it was taken seriously by practitioners who then treated their patients with this ‘theory’, got results, and then put the full warning out on the web!!! In desperation, I took coffee out and within days I started seeing improvements!!
Just like grains, not all Celiacs will have troubles with coffee—my Celiac daughter can still drink it. But my son, myself and my husband (yes, we ALL have Celiac) get our typical non-GI symptoms. My only point to you is NOT to completely disregard this important information because science hasn’t cleared it yet—-there are plenty of human subjects who can testify to the Cross Reactivity theory, and so it should always be on the table for consideration when dealing with stubborn cases of symptoms that won’t go away. 😉
I believe that everyone needs to find what works for them to feel well.
I believe you when you are telling me that removing coffee made you and your family members feel better. Maybe you guys have a coffee intolerance. ( I have trouble with soy. Others have trouble with dairy.)
but is does not mean those are “gluten cross- reactors” –a term, BTW not recogized by any top celiac centers or advocacy groups.
I am very happy for you all because I know how much of a struggle it is to feel poorly and not know why.
But here is what I do not believe.
I do not believe in something just because someone says so, especially a chiropractor who posted his youtube video about his thoughts on coffee and gluten.
I do not believe in an arbitrary list of so-called “cross- reactive with gluten foods” that Cyrex Labs has developed to sell lab test kits to desperate people.
I had “food sensitivity testing” done from a similar lab before I was DXed with celiac and you know what it said? It showed NO IgG or IgE antibodies for wheat, rye or barley…just soy, so how is THAT possible??!! If those tests are valid, how is that possible?
I was talked into doing it by a functional med doctor I trusted. This was long before I learned all I have learned about these BS tests.
I have Celiac Disease. Those antibodies should have been through the roof. So that is why my opinion of those tests is not favorable.
Furthermore, NO allergy and immunology organizations or experts think they are valid either.
“There are no reliable and validated clinical tests for the diagnosis of food intolerance. While intolerances are non-immune by definition, IgG testing is actively promoted for diagnosis, and to guide management (especially by alternative practitioners) . These tests lack both a sound scientific rationale and evidence of effectiveness……and allergy and immunology organizations worldwide advise against the use of IgG testing for food intolerance”.
But, this is a topic for another day.
Back to the topic at hand:
People post things all over the internet every day.
As intelligent adults, we have to use our common sense to decide what may be valid and what is not.
One chiropractor claims we should take out all top 8 allergens to feel better.
That’s means no wheat, soy, dairy, peanuts, tree nuts, shellfish, fish and eggs.
Some say no grains period.
dang, there goes corn.
I have read that nightshades and lectins and beans are bad for me too. . Also, avoid certain herbs.
Chocolate is out too. sorry.
Also, unless my meat is grass fed and organic, it’s not good for me.
I need water filtration systems,veggie scrubs and fruit sprays now because of the pesticides and toxins and “heavy metals”.
I have some paranoid celiacs tell me to scrub and peel all my fruits (even strawberries–now, how the hell do you scrub a strawberry without it turning to mush?) because gluten lurks in the soil they are grown in.
Oh… and do not eat eggs from chickens that are fed grain either because it will gluten me. (yes, someone thinks that)
I cannot eat fish (because of the mercury) and I cannot eat soy or cruciferous vegetables because of the goitrogens that will mess with my thyroid and my hormones.
Eggs, Lettuce, and other veggies could have e coli and unless it is certified organic, it’s not good for me anyway.
I should go paleo, vegan, SCD— they all tell me.
Dump alcohol and coffee and no black tea either.
Everybody has an opinion and a theory, it seems.
If I were to listen to everyone’s “THEORIES” and think they are all equally valid because a few people say so ……well, I would be eating and drinking………….absolutely NOTHING.
I think this Diesease sucks … honestly to everyone that has written in on this subject … and to everyone that is reading the comments – I am at a point where yep … I wish I could survive and be content EATING NOTHING …
BUT I am a overweight, struggling Celiac who has to function in a busy life and I can’t do anything in extreme.
The more I read though the more I become depressed … I fight to be an advocate for a Disease that no one really seems to understand, a Disease that is so individual (it seems) as every person who has the Disease, that there is an overwhelming group of passionate people out there that really NEED to be heard, and yet only part of the message really gets through … and between the media and the mis informed advocates out there, it has all become a right cluster … bleep bleep … excuse the language. 😉
I feel for those newly diagnosed with this disease, I feel for those of us who have had it for a few years now and still not getting things right, I feel for those that have been diagnosed for many years that see how the world is twisting and poking at a Disease that NO ONE seems to really know all about it.
How do we figure it out ourselves, how do we help others to understand … when we just don’t know … we just don’t know. Even Celiacs can not give other Celiacs advice … we can only give “experience” at how we have handled this or that, because honestly what works or does not work for us – doesn’t seem to be the answer for the Celiac sitting beside us.
So what are we to do? I think my advice to anyone with this disease is to go slowly … slowly try to absorb all the information and “experiences” out there and then if we CAN – try this or that to see if it works for us – as an individual.
AND if it does then as GD has done here … let people know about “YOUR experience” and the benefits and the failings of what you may have tried and then leave it at that. MY CELIAC IS NOT YOUR CELIAC … and from all that I have read and researched … though it honestly makes me sob somewhere deep inside … THAT is not going to change. Not now and not in the future.
Celiac Disease sucks … it is confusing, it is difficult, it is every changing – even as we heal the damage we may have caused our bodies, and we all heal at different paces.
We need to let each other know what has worked for them – LIKE Gluten Dude – and then we need to make our own decisions and see what works for us.
I feel for us all … at whatever stage we happen to be in … it is more difficult than anyone realizes and it makes us passionate and emotional to be heard.
WE all hear each other … and we understand.
Bless you all … and may we continue to work on our own health day by day and bring some “healing” to our lives.
Just to be picky, a theory has been proven but new proof could render it null. If it cannot be rendered null, it’s a fact. What you are talking about, a notion with no proof, then that’s a hypothesis.
As you say, that is a tad picky, however, since one of the accepted definitions for theory is “speculation” and various synonyms include: hypothesis, proposition, and supposition, I believe I used the word appropriately within the context of the discussion.
Etymology: c. 1590s, “conception, mental scheme,” from L.L. theoria (Jerome), from Gk. theoria “contemplation, speculation, a looking at, things looked at,” from theorein “to consider, speculate, look at,” from theoros “spectator,” from thea “a view” + horan “to see”
“The English word theory was derived from a technical term in philosophy in Ancient Greek. As an everyday word, theoria, ??????, meant “a looking at, viewing, beholding”, but in more technical contexts it came to refer to contemplative or speculative understandings of natural things, such as those of natural philosophers, as opposed to more practical ways of knowing things, like that of skilled orators or artisans.”
Cheers…and Happy Christmas !
darn, the GREEK lettering word came out as ????
In ’05, I had a two months-long battle with an intestinal disturbance after a trip to Mexico (which is now a big question in my mind) but afterwards, I could not eat eggs for years. Not sure why. It eventually worked itself out. Perhaps your body is on its own schedule…
It’s so true! I say this to a lot of people who are supposedly vegetarians as well. Being vegetarian does not just mean cutting meat out of your diet and eating crap. It means eating a whole lot more fruits and vegetables.
For me, my symptoms didn’t completely go away until I cut out lactose and caffeine as well. As for gluten free products, I make my own bread, pasta, baked goods, etc. so that it isn’t filled with the junk that you find in the stores.
and it tastes so much better too! 🙂
Funny you mention coffee. In the past few days, coffee is not sitting well with me. It is causing immediate headache. So weird. Hot water with lemon, lemon bitters and ginger feels so much better.
My husband sees all of this as a big blessing. The choice has been made for me. He is likening the processed food to putting low-octane fuel in your gas tank. Do you want to sputter and stall or have the engines rev?
All this talk is making me hungry. My body is speaking volumes.
Coffee kills me. Not in the stomach but under my right rib – I know that sounds strange but it does. I test is every six weeks. It is the one thing I really really miss especially in the Winter. Of course, in Dallas it has been 80 three times this week so I guess it’s not that bad yet. 🙂 I also use sugar and cream which could be part of the problem too…
I can’t believe it’s been so hot there! I grew up in Arlington.
Yeah, after I posted here, I decided to try (for the second time) a gluten-free green drink that I blended with assorted fruit and coconut milk. Immediately WRONG! Then I read it had guar gum. My stomach is an instant meter these days and I’m throwing out the drink mix and keeping the fresh ingredients.
I guess I have to take a bat to the head to learn the first time. Just thought maybe I already had a confused system and today seemed like a good day to experiment. How soon we forget. I’m moving faster than expected towards a “clean” diet. It’s beginning to be too much pain and disappointment to keep trying things out. It’s not worth it. At some point, I’ll probably just live in a tree.
LOL — I am right there with you! Tree it may be soon. Arlington – home of six flags, the Rangers and now “Jerry World”. The metroplex including Dallas cracks me up.
I have been drinking Vanilla Apricot White and hot water with lemon adding a little honey.
I miss Coke Zero too and I get so tired of plain water!
Just make sure it’s not a wheat tree…
Irishheart-I have the same problem with eggs. Go figure.
Some whole foods stuff seems a bit much for me.
I’ve found some confort following the FODMAP type diet, which keeps frutctose balance inline. helps keep things in the back plumbing a little more in check. I suggest it out if your still wandering.
I switched from a processed gluten-free diet to a whole foods based (paleo + low FODMAP) diet about a year ago. My digestive problems have improved tremendously, and as a side benefit I’m back to my college weight, a loss of about 25 pounds.
What about Chobani? Should that be off my list if I were to try the whole food thing? Also what spices (brands and flavors) do you use? …side note, dairy rips me up. I can do the Chobani but anything with lactose and it’s not pleasant.
I use all McCormick spices as they are all gluten free unless it specifically says otherwise.
I’ve gone for allergy testing and everything came back negative so they told me my symptoms are likely a gluten intolerance. They suggested getting tested for Celiacs but as that requires eating gluten for 6+ months everyday, it simply isn’t an option for me.
Everything I eat is really simple and basic: fruits, veggies, meat.
I’ve been slowly learning how to make all my own baked goods like muffins and things, its better for me, cheaper in the long run and frankly tastes better. (Now if only I had the space to store everything!)
I can’t eat gluten, eggs or pork. I am okay with dairy though.
Allergy testing does not reveal celiac or food intolerances. Celiac is not an allergy.
A gluten challenge does not take as long as 6 months, hon. Someone is giving you wrong info. It takes 1-2 months, according to most celiac centers, but some people report having a positive test result after going back on it for a few weeks.
Depends on how long you’ve been off it.
If you really want to be sure if it is celiac or not, have the testing done.
If you do not care about a DX, then don’t reintroduce the gluten and enjoy your new good health! Best wishes !
I’m gluten intolerant (not celiac), avoid dairy because that makes me feel better and I’m vegan. You’d think that would limit my food choices to nearly nothing, but I don’t have a problem. Whole foods are the way to go and there are so many resources for alternative eating on the internet now. I understand that being celiac is it’s own special hell (I have a good friend who has the condition) and I’m frustrated that doctors seem to miss the link between diet and health. I know someone who put her autistic son on a gluten-free diet and saw a huge improvement in his condition, and someone else whose panic disorder virtually disappeared when she went dairy free. Different strokes for different folks, but it’s all connected to what we put in our bodies.
“Different strokes for different folks, but it’s all connected to what we put in our bodies”
Smart chickie, right here!! :).
Couldn’t agree more. I’m not telling everyone to follow my lead. I’m just saying what worked for me and if you’re struggling, it may work for you too.
Oh, I’m with you, kiddo!!.
I am one of those celiacs who has so sick I had to take out almost everything and start all over again. One food protein at a time. It was ridiculous for awhile there. How much chicken can someone eat? blah.
Whole foods works best, IMHO.
(But it does not stop me from occasionally enjoying coffee, gin, cheese and some paleo baked goods. 🙂 I like them. I admit it.)
Dude this is by far your best post EVER. When the wife was diagnosed, we did exactly that….run out to whole foods and spend nearly 2K on GF foods over 2 months. She was still getting very sick. Slowly we kept reading and figured out eating Certified GF was not really GF, veggies from Whole Foods were processed in Wheat facilities, and so many other things. Well we slowly came to the realization that we needed to eat mostly whole foods that we prepare at home ourselves. We supplement some of what we prepare w processed stuff but only after vetting it. We’ve found that things that made the wife feel glutened in the beginning now are fine.
We have had amazing experiences buying food that is not marketed as GF but whose manufacturers do actually follow very good practices and have GF facilties. For example, the wife can tolerate some GF Hormel, Jennie-O, McKormick foods with on problem where Schar and Udi’s has gotten her violently ill. The point being, just cause it says its certified GF doesn’t mean it really it. We have 100% trust in Bob’s and Kinnikinnick as the only marketed GF Foods. But only after going from gluten foods to gluten free foods to whole foods is the wife finally starting to feel better. The pain is getting better and the energy level is improving as well. We eat brown rice, pasta, and at GF restaurants in the Chicago area that have either separate kitchens or strict kitchen practices. Again thank you for this post because I think this is the only way to feel better.
Sorry to ramble but i think the doctors are idiots. They are helpful to a certain extent but beyond that are tied to their data and funding sources. My dog’s vet knew more about celiac disease then the wife’s ex primary care physician, Obgyn, etc. Our new PCP is really good and very encouraging. These docs won’t tell us to eat whole foods because I am sure they are getting money donated to their research for pushing GF foods.
Ok i’m done.
Appreciate the passion le-sues. Glad the Mrs. is feeling well!
Thats awesome GD! I’m so happy you found something that works well for you and your lingering symptoms! I think trying paleo or whole foods is a great thing to try for those who have gone gluten free for a while and want to really explore their diet deeper after their initial gut healing process. I think eating WELL is a huge issue for the universe, not just us Celiacs. However, I just don’t think it’s appropriate to ask all newly diagnosed people to try this, or to make other gluten free people feel bad about the way they eat if they can’t commit fully to a plan like this. So much of eating is SO emotional, so making people “give up” even more with promises to feel perfect or to “eat real foods and not crap” is really difficult. 4 years in for me and I still struggle with gluten free crutch foods even though I know that a diet like this for me is good. So, I guess I would recommend others to just eat what feels right for their body and for their emotions. Cope with the loss of your food allergies and then explore. I know that’s what I’m doing, so I can only give advice for me. I’m going APAP, as paleo as possible. I make paleo dinners, but my lunches and some breakfast items have grains. We want pasta for dinner, fine! We will have pasta, and I can’t let myself feel guilty about it. I asked Dr. Ford (Dr. gluten) about this very issue and he had a similar approach – go GF first, and then experiment with what really works for you. Every body is different so I really don’t believe there’s a right diet for us all. But we all should be eating WELL! And exercising. And being healthy in mind, body and spirit – however we get there! 🙂
Totally agree Erica. My intention was not to tell people what to do, but to say “hey…this worked really well for me and if you’re still struggling, you may want to give it a shot.”
Well said, Erica 🙂
I am on day 16 of the whole 30 – and it has changed my life – I have given up coffee and caffeine (I was a really bad junky). My energy level is great, I have energy to work and run out, I am training for a half marathon. My skin looks good and most of my tummy troubles are gone. I am a big believer in whole 30. and i know we arent suppose to weigh ourselves but I did and I am down 6 lbs
This sounds great and I am inspired to give it a try. My one weakness: I love (crave) crunchy snacks.
So what do you eat to satisfy the crunch? I’ve tried carrots, almonds, and now bell peppers… any other suggestions for good crunchy snack whole foods? ( i will miss my tortilla chips!)
Gluten free crisp bread, its so nice with just about anything on it, or Glutino lemon wafer cookies…………my favourite. NOM NOM NOM 🙂
great cruncy and lovely healthy is kale snack, , sprat some good oil on palmsize pieces of green kale add a pinch of seasalt and maby garlic pulver and f.ex chillipulver, bake in oven for 50 minutes on 130 celsius, this one tastes wonderful and is loaded with good powers
thanks for a good blog
my bff who has celiacs and has been gluten free for over 5 years told me that. My doctor also advised me against reintroducing gluten into my diet just so I can go and get tested as the test isn’t always accurate (and is expensive).
I am sick for days just from one meal that contains gluten so it just doesn’t seem worth it to me.
I figured out gluten bothers me through process of elimation, I’ve now been avoiding it for about 1.5 years.
Another smart chickie right here! Good for you, hon.
( and very true about the testing. I have celiac, yet my blood panel was negative.)
I was not sure from your post if you were new to GF.
Sorry for telling you something you already know.
I couldn’t agree with you more, Gluten Dude. I have severe gluten, dairy and soy intolerance (gluten being the worst of the 3), plus lymphocytic colitis. I’ve been “fine” but never “good.” Still have some D, some random skin rashes, autoantibodies that persist, etc. I just switched my workday breakfast routine from eating Udi’s GF granola or corn and rice cereals with almond or coconut milk, to making a green smoothie in my blender with greens, a few fruits, flax meal, rice protein and a little almond milk. It has made a huge difference in every way!! I still have some GF “treats” but otherwise food is meat, veggies, fruit.
That’s my breakfast most days. 🙂
Kale is awesome isn’t it?
Have you added a probiotic to your regime?
There are as yet no controlled scientific studies, but some people with microscopic collitis have less diarrhea after adding them.
My doc suggests dairy free Culturelle with lactobacillis GG.
Probiotics decrease inflammation in the gut, can help provide nutrition needed for healthy gut lining cells, synthesize vitamins such as the B vitamins biotin and folate, and can break down certain cancer causing carcinogens..
I sound like a “probiotics pusher” sometimes,
but I had no detectable beneficial bacteria upon DX, so I know how much they help turn a leaky gut around.
Just a suggestion. Best wishes to you!!
I have got to learn about green smoothies!
here’e one to try, G D. Any fruits/greens can be used . Mango is good too, if you can find a ripe one.
Throw this in a blender:
1/2 cup or coconut milk or almond milk (calcium, protein)
1/2 cup mango orange juice (vit. C, D, calcium)
1 banana (potassium)
handful of frozen or fresh strawberries, blueberries–any berries! (antioxidants, Vit C)
handful of pineapple (digestive enzymes) (I cut one up and freze most of it for the smoothies
handful of froze, chopped kale (I get the chopped, organic pre-washed bags of it and just stick it in a large ziplock bag in the freezer) A zillion good reasons to eat leafy greens, including Vit K and folate, which we need.
a TBLSP of ground flaxseed meal, hemp seed or chia seeds (healthy omegas, fiber, protein–and I’ll just say it: smooth running pipes!)
Some people add protein powder to it. Some add a scoop of yogurt.
No real “recipe”. Have fun with it.
Whirl it up. Cheers!
Still hoping you’ll go for the edit button when you upgrade your site. 🙂
Sorry for all the typos. I type too fast for my own good.
Interesting. I am new to eating GF & feel pretty well after stopping seven months ago. My comment is not against GD or anyone else doing the whole 30. Before gluten (B.G.?) intolerence i tried different eating plans to see how they affected my body; low carb, high carb, low sugar, no sugar. atkins, protein power, etc. y’all know what i am talking about-anyway, i guess i am just saying that the whole 30 is great but what about after that? how long can you follow that eating plan long term GD? won’t it make it worse for your system now since it is used to whole food, eventually you will be eating grains and kind bars right? just wondering not being contentious. i wish you the best.
Hey Jersey Girl. I will keep at about 90% Whole30 from here on in. I will allow myself the occasional treat, but for the most part, I feel like crap afterwards, so I don’t feel like I’m missing out an anything. Just a little bit of spontaneity. But I’m used to that.
I keep a daily food log for the times I don’t feel good so I can go back and circle foods that might have caused the problem I have found many allergens this way. It includes a poop log, sleep quality and exercise. It has come in handy when a problem arises and I have to visit a doctor and describe what’s going on with me. Sounds extreme but only takes a few minutes at the end of the day.
Isn’t a “poop log” redundant 😉
snicker, snort….tee hee
Mieux vaut plier que rompre.
Adapt and survive.
“Better to bend than to break.”
I love french. how true is that statement above…?
This is a really great post GD!
I have to agree with you. I’ve been on this soap box (?) for years now. We as a nation- regardless of what diseases you may or not may have- need to get back to eating REAL food. Fresh organic veggies that you grew or bought from the farmer’s market or CSA or natural health food store. Clean, un-processed meats. No GMO. You get the idea. 🙂
Why are we putting toxins in our body? Blue No.1 is made in part with petroleum. And we **wonder** why we don’t feel good.
Just because it is labeled “vegan” or “gluten free” or “low-fat” or whatever does not mean it is healthy for you. Food marketing and packaging is designed for our eyes, not usually our bodies.
Oreos are vegan, but they are filled with crap.
Eat real, live food that is perishable!
Couldn’t have said it better myself Sarah…thank you!
another smart chickie! ….and amen, sister!! 😉
great topic today, G dude—thanks, sweets!!
I understand what you mean by this article and do agree that folks newly diagnosed shouldn’t just switch to processed GF food, but also eat more whole foods. HOWEVER, you need to go a little further AND rather than blindly tell Celiacs to ditch their GF alternatives, you shoulkd and they shgould get tested for cross-reactive foods. (Foods with proteins which the gluten antibody may recognize as gluten and also attack. Such as dairy or even something which seems benign like brown rice.) Just as with giving up gluten if you really don’t need to, you shouldn’t blindly give up other foods without testing or a medical need. You may have problems with dairy or some other grains, but not all grains…so figure it out. That grain which isn’t a problem for you could be part of your good whole food diet.
“cross reactive” foods? Sorry, no scientific or medical evidence for this claim. None.
We have discussed this before on this site.
Show the evidence, please?
My Gastro Doc just told me two weeks ago that all Dairy contains Casein. Casein is protein that is much like Gluten. And, many Celiac react to Casien the same way they react to Gluten. It has nothing to do with Lactose.
But, it’s an individual thing. So, some people may “cross react”.
The poster before you was referring to “18 allegedly cross- reactive foods” that some people claim celiacs suffer from. These people want to sell test kits to show you “your reactions” to these 18 food proteins that somehow damage the guts of celiacs in a “gluten-like reaction”. I read all about this extensively because I was interested in seeing if that was my problem and there is no peer-reviewed publications that support these claims.
There is no evidence of this anywhere in the medical literature. Dr. Fasano was asked about this recently in an interview and he would not support these tests from Cyrex labs.
That’s good enough for me.
Do people have a problem with casein protein? yes, sure!
They can have a problem with many proteins. Soy is a big one.
I cannot have soy myself. We can have many food sensitivities in conjunction with celiac. That’s the sad truth.
But that is not the same as what this poster meant by “cross-reacting with gluten”.
I hope this clears up what I meant by my post.
I shy away from giving anyone anything that can be construed as medical advice. I try to keep it to what I’ve done and what I know.
Okay I have read through al the replies and i don’t normally post comments but this whole subject is very important to me and many others. I was diagnoised with crohn’s about 2 years ago. after living in so much pain for 2 + years. The first thing i did after reading all about crohn’s was get my blood allergy testing done. I found out some very interesting things. I had allergies to over 50 different foods. i had not had any wheat or gluten related product for 3 months before the test and i still showed a allergy to wheat very little to gluten, but i have been glutened before so i know that i am allergic to it. I am also allergic to all the anti-oxident fruits and many other fruits,and a whole spectrum of things. I am now a gluten free baker and am starting a GF Baking Co. in the Sf Bay area. So i eat lots of GF grains and they do not make me sick at all. but i get sick from other things i am allergic to.the way my body reacts is by getting inflamed and my body and joints start to hurt my stomach hurts and get weird. My point being that I am Having allergic reactions to the foods i am allergic to not the GF grains.
Besides the GF baked goods i make, sell and eat myself too, i eat mostly a whole foods diet as much as i can. I am limited in what i can eat also because of my crohn’s and my digestion. I am even allergic to ginger and tumeric. When i stopped eating everything i was allergic to i lost 35 pounds and have kept it off all while eating My GF baked goods to my hearts desire.
The weight i was carrying around was pure imflamation, nothing else.
Maybe why people have such success with the whole 30 or SCD or GAPS is that following these diet’s people are removing the foods they are allergic to. Maybe people just attribute it to the GF grains and maybe it is some other food that they have an allergy to but just didn’t know.
This is a very tricky topic, I really think that every person / medical case is very different.
BTW I did not have an allergy to eggplant so i though hmm maybe i should eat some eggplant it is one of the only vegi i can do. well after 5 days guess what? Pain and inflamation stopped eating it 5 days later felt better. it did not show up on my test because i never eat eggplant so i did not have any anitgens to it.
“This is a very tricky topic, I really think that every person / medical case is very different.”
I have been eating gluten-free for 4 years but am still having symptoms of Celiac Disease. This was very interesting to read. I’m intrigued by the Paleo diet and not eating any “gluten-free” foods. It seems difficult
It’s a mindset. You can do ANYTHING for 30 days. Start there.
I LOVE kind bars!bOf course, I haven’t had one since I got my braces on, but still, they are very good! I have to say that honestly I don’t always have the helthiest lunch. Sometimes I’ll run out of time in the morning beofre the bus comes, so I pack a mish-mash of foods that I can put in ziplock bags. I try to pack a sandwich most the time though, with mandarin oranges and this really good granola bar thing. I’m not quites sure what it’s called, some enviro- something. I’m sure I can find a healthier alternative to that paret of my lunch.
I really like how passionate you are about not only eating gluten free, but eating healthy too.
Running out of time is and needing a quick snack is reality. There will absolutely be times where you need that quick bar. We just don’t need it on a daily basis…that’s all.
Thanks for the kind words.
I can’t eat the chex cereal at all. I feel like I got hit by a bus…exhausted, head ache, brain fog. It’s aweful. I have heard the preservatives BHA and BHT can cause this. Overall, it’s just aweful for you.
Interesting. And I was eating a bowl a day. No more.
Everyone thinks I am crazy, but I have the same reaction to chef. I get stupid! I could drive past my own driveway without realizing it. I feel so releived that I’m not alone!
*cheX I have auto correct
Well this was a timely post! I started off taking flour, sugar out of my diet over three years ago. Basically I removed all processed foods. As I started adding things back in I realized rice didn’t agree with me and dairy caused acne. So I also went Paleo. I thrive very well on that lifestyle. I was diagnosed Celiac last December. It really explained a lot of symptoms I have had all my life. Well there are a couple of Gluten Free food fairs in our area in the next few weeks. I was planning on attending. This made me think…do I really need the processed food? NO! Does my Celiac daughter need processed gluten free food? NO! Thanks for reminding me of something that I already know, but wanted to ignore for the holidays! Sometimes what you need to hear just shows up to remind you what you need to hear!!!!
It’s all about the timing Renee. Good decision.
Dude! This is great! One thing I wanted to bring up, because I was the same. I got my vitamins tested with Spectracell Labs (a nice 2k, 2/3 of which was covered by my insurance) and found that even after all my supplementing and healthy non-gluten free eating, I had a severe vitamin b5 (pantothenic acid) deficiency. After doing some research, this is normal for celiacs… So try supplementing some pantothenic acid for a few weeks and see if it helps. I’m taking 1500mg a day.
I completely agree, I started eating GF and didn’t see any dramatic results and now I eat a stricter version of paleo which essentially is I avoid anything that turns into sugar ( high sugar fruits, root veggies, honey, maple syrup etc) and no grain or dairy. It has changed my life!!
So cool Chelsea. We are what we eat.
Dude…I agree that we must eat whole foods, but we also need to ensure we choose gluten free foods for those times we want “chocolate chip cookies”.
I am lucky to have a doctor who upon diagnosis in February told me NOT to put one crumb of gluten in my mouth ever again. He said gluten was poison to my body. He also went on to say to stick to one ingredient foods as much as possible. I can mix each single ingredient to make a salad, soup, etc. and THAT was the best advice ever.
It is not going gf that is the issue – as we MUST for our overall health, but we stay away from package and processed foods! ALL people should follow this and stay away from packaged foods. For people with celiac, we have to ensure that if we do choose a ‘treat’ that it is gluten free.
Since February, I have lost 25 lbs and feel better than I have in over 20 years!! I used to have to rely on a wheelchair for distance, grocery shopping etc. due to a neurological issue, but have NOT used my chair in over 2 MONTHS!!! Gluten DOES harm our bodies, no doubt about it!!
P.S. I am also off one of two strong steroid puffers that I have had to have for severe asthma. Even my asthma is so much better!!
Absolutely. I assumed everyone here knows they must eat gluten free. Thanks for pointing it out though.
Great piece Gluten Dude! I couldn’t agree more. If you are replacing your diet with one crap food for another, it won’t make you feel good. Processed junk is bad for us anyway you look at it; gluten free or not.
Thanks Sherrie. Some agree. Some do not.
Please don’t get mad at me Dude….I was wondering if this means you’ve also given up the Tito’s vodka? Last I knew, it wasn’t listed in any of the major healthy food groups….in fact, if you never drink alcohol again, it won’t hurt you. Your body won’t miss it. That said…I do like an occasional glass of wine…but I can take it or leave it. No big deal….
I’m kinda surprised you’ve gone paleo….I though that it was considered a trendy diet…
Rice and corn are real food and do have a place in a person’s diet. As far as I’m concerned, everything in moderation…gluten free of course 😉
Anyhow…I’m glad you’re feeling better!
Hey Galwayfan. Could never get mad at you 🙂
I am living about 90% Whole30 and that’s what I’ll stick with. So yes, I will indeed still have Tito’s. Yes, I will still go out for Sushi. Yes, I will still grab a Larabar in a crunch.
I didn’t go Paleo to follow a trend. I went Whole30 cause I constantly felt like crap and I HAD to try something different. And the results speak for themselves.
I am not telling people what to do. I wish everyone would honestly understand that because I said it in my post clearly.
All I’m saying is what worked for me and IF you are still a struggling celiac to give this a shot.
I’ve considered trying it myself, but I get low blood sugar without eating some type of starch with a meal. I also can’t eat just a bowl of cereal without a sugar drop either. I need to eat a balance of proteins, carbs and fats in order to feel decent.
Glad to hear you haven’t gone off the deep end 😉 I didn’t think you were the type anyhow…just though I would ask 😀
Perhaps I missed this in the thread….
I recall you mentioning your grocery bill when you first began your new diet.
From a cost perspective, has your grocery bill significantly rose much more?
This is a very interesting post. Thanks GD. I e-mailed IH recently, about having problems after making my own bread, gave a list of the ingredients, and I have come to the conclusion that I can’t have any grain at all. Udi’s has bothered me in the past.
The first thing I did when I was diagnosed, was go to the health food store and buy packaged GD food. All that sodium and crap. Most of it is still sitting in the cupboard, b/c I did not like packaged food BEFORE I was dx. I thought to myself, why did I buy this stuff?
GMO is another issue, mann, it is bad for you. We have got to get the US to pass a law saying it has to be labeled. California is trying to do this as I type. It is Proposition 37, if CA can get this passed, all states I’m sure will follow.
There is a gal here, (PhD.) in my writing workshop. She is writing a book about going beyond organic. She will read a couple of chapters and we give her our input. What I have learned from her is astounding. Nutrients in our soil (majority of farms in the US) is practically nonexistent. An apple has 80% less of the nutrients it had 50 years ago.
Her topic this week was about GMO. Our gut attacks GMO’s as a foreign invader. 85% of all corn is GMO. Here in Hawaii over 50% of the papaya’s are GMO. Organic farmers are having trouble growing non GMO papayas b/c of cross contamination. In order to avoid these foods, one has to eat 100% organic, but that does not totally ensure you won’t get genetically altered food.
I guess one thing about having celiac disease, gluten sensitivity and not able to ingest any grain; we will avoid the gut trauma that GMO foods will cause.
There are other topics she has revealed in her studies that are mind blowing. Read what the company that makes Round Up,( Monsanto), has done to our corn, soy and cotton crops, don’t just think clothes when you see the word cotton. Cotton seed oil is popular in processed foods. After reading this you may never eat fresh corn or any processed foods again.
I like beef and pork, but these animals are being fed GMO foods. They are getting sick! If you want to eat meat, stick to labels that say “grass fed” or “100% organic.”
My tip for the day.
Hey this is GREAT!!
I have known about this for a while,but got pushed to the extreme before I acted on it.
I was wheat free (mostly. Like over 99%) for 9 years, and knew I was sick if I ate too many replacements. I moved earlier this year and dropped my usual gluten free bread for a pure rye bread. This was BEFORE I discovered I was celiac. My health improved.
So when I realized I was celiac in the summer, I decided that I would use some gluten free replacements for a few weeks. Just to get my head around the complete transition. I knew long term I would only be able to use them in a limited way.
So – bread, breakfast cereal , crackers, cookies.
I lasted 2 weeks. I was so sick. Euuck.
6 weeks now without that c#@£ and I feel fantastic. I have an occasional gf brownie and a bit of rice pasta.
Good work Dude.
GD….I agree with you…but I feel like the bigger issue is that people are not experts in nutrition, nor are they being instructed in nutrition when they are diagnosed as gluten-intolerant or celiac or self-diagnosing.
What really appears to me in the comments is that over and over, people are saying the same message – “Had I learned that most processed food is crap, I wouldn’t have ate it.”.
Its not that they should stop eating everything automatically, but that they need to get educated.
The other issue – very seperate – is that gluten free labeling is now rampant. Gluten-free is the new “fat-free” term. People believe its healthy because its -free, just like they believed fat-free food was healthy because its fat-free! They didn’t think about all the sugar and filler that went in there to taste like its fatty cousins.
Part of my MBA class about opening the gluten free bakery was that yes, my ingredients are higher priced because they are high quality (and not just rice flour recipes), and that just because its gluten-free its not healthier than the original.
Chips are gluten free. Soda is gluten-free. Candy is often gluten free. Vodka, rum, gin, and whiskey are gluten free. That doesn’t mean they’re good for you.
In the interest of fair disclosure, I’ve got a very strange diet. I eat at a ton of restaurants, I eat a ton of naturally gf processed food (things like corn tortillas), but I don’t have any symptoms like what you guys have described. I’ve had trouble sleeping but that was fixed by nixing caffeine and sticking to lower fat restaurants (lots of local barbecue! 😉 ).
you took an MBA in opening a GF Bakery? if so I would love to talk to you sometime as I am in the process of opening a Gluten free baking company. I also use higher quality ingredients such as organic coconut oil and other organic GF grains. my e-mail is email@example.com. i would love it if you could spare some time to talk by e-mail or the phone.
where are you located i am in the S bay area.
Connie – I agree with your concerns on GF labeling. Looking at the new Fasano article showing some non-responsive celiacs are reacting to lower levels of gluten (I’m not surprised), it makes me wonder how the FDA is going to approve the proposed labeling law. I do not feel comfortable having ingredients made from wheat, barley, or rye regardless of whether they test above or below 20ppm. There is too much research suggesting the ELISA assay is not reliable enough for processed food.
This is the same thing I’ve been trying to tell other GF people for ages, now. Cut the processed food and you’ll cut out 90% of your issues, if not 100%. I went mostly paleo/keto with my diet and I now feel better than I have since I was a teenager. I was diagnosed Celiac in 2009 at 37 years old.
Honey is also a great alternative sweetner that I’ve found has helped as well. Raw honey, that is.
I’m so glad that you and I are on the same page! I love reading everyone’s comments and hearing that the sentiments that both you and I share extend beyond just us. That this is a true movement that has the power to grow legs.
I got sick twice after going gluten-free because of all the junk I was still eating. (as I wrote about in my own little tirade: http://www.glutenfreeschool.com/2012/10/15/tough-truth-gluten-free-diet/)
I love your passion… Let’s keep building because this movement needs legs, so let’s give it what it needs so that GF people can get the information and power they need to make better choices.
Great post – once again GF 🙂 I totally hear where you are coming from and if people take the time to really read your post and the comments ~ no one is suggesting that “one way” or “another” is a given way for us all. IH and others also point out that “healing” and how our bodies react to foods is very “individual” and everyone needs to make their own decisions.
In saying that we all know that “processed” food is never the best choice … celiac, gluten free or not … we all know this. It also makes sense why this type of food has become a main stay in many homes … time management, picky eaters ect. I like the fact that you, while you did change the way you eat, do not stand on a bandbox and say this is the way it should be … simply that it truly helped you feel better and that you want to feel this good so are willing to keep the way you have been eating for 90% of the time ~ hooray!
Thank you for being an inspiration in the way that knowing you still were not feeling great … did SOMETHING … TRIED something … and I am happy it worked out so well and it can motivate others of us to make SOME KIND of change so that we can start feeling better as well.
I have been diagnosed for over 4 years myself and still don’t feel great and know I have to make a change … we had a Disney Cruise booked so I was looking to make my changes soon after we got back. To make a long story short – after we got over the little bit of sea sickness (getting our sea legs ha ha) the week we spent on the cruise was the best week I have felt in a long long time. No I didn’t get rid of my morning coffee, had a few drinks as well (we were on vacation 😉 but I DID for the most part stop eating a lot of processed foods. Our eating on the cruise was by no way minimal (Disney Cruises are awesome and we can’t wait to go back) but it was a lot of simple meats, and vegetables – though we did have gluten free buns for most of our meals ~ I felt really good.
Since coming home however we have gone back to our way of eating which includes more processed items and I haven’t had a decent day yet … so the more “whole foods” approach makes sense to me and I will have to get myself more organized and get on it.
I mean I can’t afford to cruise all the time can I? ha ha …
Thanks for motivating us all and being a good example … you are right – it’s a mind set … we can all make changes if we think it will only be for 30 days … give our bodies a chance. I am sure more of us will be pleasantly surprised if we give it a go. 🙂
Thanks Sherri. Glad to hear you had a great cruise.
You are correct…I am not preaching, only advising and sharing my story. At the end of the day, everybody makes their own choices. I just know my recent choices have worked for me.
So glad you had a great cruise and that Disney took your GF needs seriously!! 🙂 I always hear good things about Disney and their attention to allergens and gluten and keeping their patrons safe..
I agree with you. Nowhere does the dude say everyone MUST do this. He suggested it as a way to see if it helps. And I certainly never say it to anyone because I know how that is met with resistance.(hell, I wanted GF goodies too–and loaded up on them at first and felt crappy) I tell the newly diagnosed to try it because I know it is key to reducing inflammation. We can only suggest.
I have to say this again because I think this is key: people like us with a few years in (and likely more extensive gut damage if we are over 40) are going to have to figure out what works best.
As Aloha Jules and I have figured out, we have to be more vigilant.
I had a chance to travel this weekend over to Cape Cod to see family and friends. I ate at the Naked Oyster in Hyannis, Mass. The chef is GF and they offer an extensive list of GF options. I have to say I ate the most amazing meal because everything was FRESH and prepared with herbs and veggies. Nothing from packages, nothing processed and nothing with ingredients I cannot pronounce. Just as I cook at home! And I am happy to report no “glutening” symptoms or tummy troubles whatsoever. (I did indulge in cocktail and a creme brulee and make no apologies for it 🙂 ) I deserved it.
I was the happiest camper for 2 hours as I felt safe and gratefully enjoyed every mouthful.
And to answer a question posted up above somewhere, my grocery bill is no larger than it was pre-diagnosis. In fact, when I cut out the packaged GF stuff, my bill is substantially lower.
I hit local farm stands, farmer’s markets (in season), meat markets and the hubs shops the produce, meat, seafood, and dairy sections in the market for us. Sometimes, the frozen section. All on the outer edges of the store. I have not been down a center aisle in weeks and that was for a McCormick purchase when fennel was not available fresh.
Every BODY is different, sure. But if someone tries eating this way — whole foods with no additives, preservatives, MSG, GMOs, food colors, etc.—for a short time and feels better, then that’s a very good thing.
Hey, Dude. I recently stumbled across your blog and have become a fan. This post really hit home, so I thought I could share the shortened version of my experience. Maybe it will help you or others.
I was diagnosed in 2006 and after a bit of experimentation, I eventually went grain and dairy free. My system was so damaged, I couldn’t even handle gluten-free grains because my body reacted the same way. My doctor was/is awesome because he has celiac also. He said that many celiacs don’t process grains well, and that celiac was once considered a “grain allergy” and patients were taken off of all grains. It is only in recent years that celiacs were told to just stay off gluten. (I didn’t fact check this… just sharing his comments.)
Anyway, fast forward several years. Slowly, I allowed the rice and the sorghum and all of those other grains (sans gluten) back in. (Never have been able to add dairy back in, much to my disappointment.) Seemed to be doing okay. Not great like I did grain-free, but it gave me a lot more freedom with eating so I sucked it up and pressed on.
Fast forward to a year ago. EarthFare opened up in my very small city. WOW! Plus, GF became the new low-fat and low-carb and GF foods exploded onto my local grocery store shelves. I went hog wild and began eating everything marked GF. Big. Big. Mistake. Slowly my health has deteriorated to where I feel like I am back at square one. So I went back to my gastro. First thing he asked, “So how many gluten-free processed foods are you eating?” Uh, none of your business. 😀 He said that since EarthFare came to town he has had an influx of old patients diagnosed with celiac that are having problems again because they have loosened up with their eating. (Not knocking Earthfare, just all the GF goodies that they carry.)
Soooo, back to square one for me. You are right. That stuff is junk. And it doesn’t bode well with me, so adios!
“He said that since EarthFare came to town he has had an influx of old patients diagnosed with celiac that are having problems again because they have loosened up with their eating.”
Now THAT is very interesting. Thank you so much for sharing.
I thought I would share this good news with everyyone this morning.
I had blood work done last week. The improvements since going gluten free are staggering. My Vitamin D, Iron, B-12, CRP(inflammation marker) and Liver Enzymes are all normal for the first time in over five years. And, I’ve officially lost 70lbs in the last year. This means my gut is healing.
I still can’t metabolize vitamins. They give me abdominal pain. The Doctor said my Liver doesn’t like them:-) Therefore, I have to get my nutrients through food source and varied diet.
In the midst of recieving this wonderful news, I was in the middle of what the Doctor called a “flare” and have been very symptomic. The Doctor told me Celiacs are prone getting other autoimmune Diseases and food sensititives. Once your body responds with inflammation it will always respond that way unless you train it otherwise. inflammation causes disease. Grains and Dairy irritate the body and produce mucuos which causes inflammation.
So, I guess what I am saying is I’ve learned Gluten Free isn’t enough for me to stay healthy, feel good and prevent further flares and illnesses. My plan is to stick with Paleo 90% of time and occaasionally indulge myself with diary or brown rice. But, I’ve learned the hard way my diet can’t be based on dairy and non gluten grains.
Have a great day everyone.
I, too, found that I had to give up ALL grains to be well. That means I can’t have virtually any of the processed gluten-free foods. I love the recipes at Elana’s Pantry. Some of her recipes use agave, but it can be replaced with apple juice concentrate.
No grain…no pain.
Gosh – you said a mouth-full here. Truer words will never be said.
New GF people run out to stock their cabinets full of advertised GF foods. If you ate right, you’d be healthier anyway.
Sometimes I wonder why this is such a new disease…. or so many new cases… or advertised diseased…. or just a feel-better GF eating habit. Is Celiac on the rise because people cannot handle the garbage that has been pumped into this world? Even a non-celiac disease person benefits from eating GF.
Gluten has been increased tremendously in all foods, fast foods mushroomed, shelf life requires it and even the wheat seeds have been modified. Maybe we have become so gluten intolerant because of the market place.
Surely those that have died before us ate healthier home cooked meals. And were void of the fat-people syndrome. When I was a kid, I do not remember parents being waddling around. They did not need to buy a gym membership.
you may be interested in reading
The Problems With Modern Wheat on Mark’s Daily Apple. I love his blog.
Hello. I too was diagnosed with celiac early last year, after losing over 100 pounds in less than a year. Eating gluten free did not help me. I ended up in the hospital a second time in August. Getting weaker and weaker not absorbing any nutrition. I was finally diagnosed with collagenous sprue, much worse than plain celiac. My GI Dr didn’t know anything about the disease and neither did any of the other 16 Dr’s at his clinic. He contacted Mayo Clinic’s head Celiac Dr and they came up with a therapy. So far so good. I still have to eat gluten free, but I am not getting sick anymore.
100 pounds in a year…my gosh…that’s insane. So glad you found a diagnosis and you’re on the road to healing.
Dude, you’re absolutely right. I have been GF for nearly 6 weeks now after finding I have CD. My first instinct WAS to go to the store and find everything I eat all the time, but in GF form. That didn’t take long to stop me in my tracks and make me reassess after I saw the cost skyrocketing just to eat a few similar foods each day.
After just a few days of being GF I felt like a new person. I have felt great for nearly the entire 6 weeks until 3 days ago. I was most likely cross contaminated and the pain I’ve been enduring has been worse than before I went GF. I wouldn’t wish this on anyone and I had nothing containing gluten. I am also lactose intolerant and have been my whole life so I know what to avoid after 43 years of doing so. This wasn’t a milk issue because those reactions are quite different and much shorter in timespan. I’m almost certain I got glutened, but I have no way to confirm since my meal was from a restaurant (from the GF menu, for what that’s worth…prepared in a kitchen where CC can easily happen).
Anyway, after a few days GF I decided to shop differently. I bought foods that just happen to be GF by the nature of their ingredients and preparation. I went in search of foods I’d like that just didn’t have gluten. I went from sandwiches and pizza, fried chicken, fresh and store bought breads, etc. to fresh fruits, mostly apples, bananas and oranges, meats without gluten gravies or seasonings, burgers without bun, GF hot dogs (yeah still a nasty ingredients list!), potato chips that are GF (Lay’s), pudding, peach cups, veggies, GF peanut butter cookies (homemade and as good or better than normal recipes with flour!) and other yummies.
Sure, I gave up a ton to be GF and I gave up more to avoid the ridiculous cost of protecting myself from gluten-containing foods. I spend a bit more because of all the fruits and veggies, but my meals are just about the same as before at dinner time. I eat a lot, lose weight because I’m not eating junk food, and I feel like a new person. It’s only expensive if we give in to “needing” all those same foods in GF form. It’s so much easier to just find foods naturally free of it and throw in a couple treats (M&M’s, Snickers, GF brownies, GF cake, etc) to protect from deprivation. It’s not hard to eat healthy and the body responds happily to the change. I’d so much rather spend that money on good foods in meats, fruits and veggies than throw it away in fake crackers, breads and other foods that want to be that substitute that often does not satisfy the craving because it fails in either taste, texture or price.
You’re speaking my exact language Bill. Thanks for your awesome contribution.
I just stumbled across your blog. Excellent and informative reading.
My usual “glutened” symptoms are migraine, brain fog, exhaustion, and bone/joint pain. For the past year I’ve just been flat out tired. I’ve tried to rule out different foods, right now I”m not only gluten free but dairy free with no red meat or pork. I don’t feel any different.
I’m going to try to cut out all the gluten free processed foods….which means no more Udi’s bread for a while. I’ll just eat my peanut butter on a spoon 😉
Yep…exhaustion is the biggie for me.
I am now gluten free, dairy free, soy free, corn free and grain free.
I wish I could say I’m pain free, but at least I’m better than I was.
I think what bothers me most is the idea that you will feel “normal” after taking gluten out of your diet. I was diagnosed with CD four years ago, I”m just now learning that all the symptoms might not go away.
Most people are told “just go gluten free and you’ll be fine”.
Like the “magic will happen”.
Just. Not .True.
Celiacs need follow up care and some may develop other food intolerances. (to dairy, soy, corn, for example)
Multiple issues may arise: anemia (iron, B-12, Folate), thyroid dysfunction, liver and kidney disease, diabetes, heart disease and any number of AI diseases.
The problem is there is no “handbook”, no set follow- up care protocol, and sadly, most doctors can’t be bothered to see how their celiac patients are recovering. I have read articles from the 90’s through this year where noted celiac researchers urge their colleagues in the GI specialty to “create a standard of follow up protocols”.
A friend of mine (also a celiac) says “unfortunately, we are the ugly step child of the medical world being told to sit down and shut up”.
No one wants to deal with/acknowledge it.
IH, I feel the same way and what your friend said is right on. I called and left a message for my dr. last week, to follow up on some heart issues plus kidney, and thyroid, I haven’t heard back. All these problems are from undiagnosed celiac disease, and are not going away. GF Dec. 9, 2011. Complained of gut issues since 1976.
A gal I met recently who is here part-time, asked me over for lunch. She knows I have celiac disease, and said she would have chicken and something else. I told her I would prefer to bring my own lunch, and she got miffed.
I tried to explain the cross contamination issue, I actually got on my soap box, b/c I am so tired of not being understood or taken seriously.
When we got together she said she thought I was being over sensitive.
Tell that to my gut. I have another friend who does not invite me over anymore, (no loss really). I’ve had her over allot, but she does not know how to cook for me (which is not an issue b/c I don’t want her to) however she does not like me bringing my own food for some reason. I know who my true friends are. Unfortunately they live on the East Coast.
BTW, hope everyone who lives in the path of hurricane Sandy is safe. All of my family and good friends are in the path from Beaufort, NC, to Baltimore, MD.
Be careful folks.
We had a tsunami warning last night, the sirens were going off, the gal who invited me to lunch, and said I was “over sensitive,” plays the flute; (American Indian style) I e-mailed her and asked, “is that you playing the flute?”
I am naughty very very naughty.
(snort) hahahahaha!! “are you playing the flute?”
good one, Jules.
Too bad someone got “miffed” when you told her what needs to be done. I honestly do not understand why she would care.I’d be happy just to have you come visit. Bring whatever you want!
The ONLY time I get glutened is when I trust someone else to prepare my food, so I just do not do that anymore.
We visited friends on Cape Cod last week and he was so gracious about asking me questions beforehand, using a flexible cutting board I brought him and allowing me to help him prepare our dinner. It worked out well and I brought dessert. No one was upset and I am not sick.
If someone does not accept who you are –including the need to keep you safe—then, boo on them. What kind of friend does not take the time to learn about cc? What kind of friend suggests you are being “over sensitive” (would she say that if you had diabetes? cancer? )
I may have shared this already, but someone very wise said once “Having celiac like having is a built-in jerkometer. ”
I will always wonder ‘what did they add to that to make it NOT GF?’ at restaurants, when things like a plain baked potato are not listed on a GF menu. Makes me rethink eating there.
I find that that I am using the GF premade products less as regular food and more as treats as I go on. I was a baker/cooking freak and am finding as I get better at adapting my recipes I even need that less and less. Cost is still high though, because a lot of just the ingredients are overpriced or hard to find. For example making a loaf of bread vs. buying one still equals around $4 a loaf. But at least I know exactly what is in the one I have made.
By the way, if you are making a GF cake, extra egg whites beaten to soft peak stage and slowly folded in just before baking, gives a lighter texture and a moister end product.
I just stumbled across your website here and I am thrilled to death! It’s nice to know that someone feels the exact same way I do.
As far as this post goes, I totally agree with you! The only time I feel at my best is when I’m not eating all of that “gluten-free junk”, however tasty it may be… I’m in the process of trying to heal my body from a 3 month gluten poisoning. The company that makes my lip gloss suddenly changed their formula and it took me forever to figure out why I felt like I was dying. But now I’m on the mend with a healthy diet! Nothing like it 🙂
Glad you found us Chelse.
And that’s another reason why I do not wear lipstick.
Seriously, sorry you got hit. That just sux.
Happy, speedy whole food healing.
I agree completely! Typically my diet consists of whole grains, veggies, fruits, protein, and some dairy.
As of Thursday I am on vacation with family. My family is very understanding about the disease, and go out of their way to accommodate me. One night we had gluten free pizza, they packed gluten free pretzels, crackers, bread and condiments in our lunch cooler… they researched safe restaurants for me to eat at… last night my sister served a rice casserole I can safely eat…. and today I feel like CRAP.
It’s not a gluten-crap, I know that feeling all too well… it’s a… oh my god I miss my green smoothies, quinoa, bean soup, and loaded soup kind of crap. As much as I love my family and their efforts to make sure I don’t feel excluded or that I am an inconvenience, I can’t wait to get home and go back to my whole foods with -occasional- gluten free products.
I actually scoured my sisters blender this morning after a trip to the store so I could make a green smoothie (spinach, lettuce, mango, oranges, frozen banana, almond milk, and chia seeds), and set beans to soaking so I can make dinner tonight MY way….
You’ve mentioned you are receiving some flak over this post, and just wanted to encourage you to keep telling it as is! It’s important to remember that gluten-free products are NOT the complete answer to celiac disease.
Looks like I’ll be ditching the rice, corn and cheese again (dammit)
and back to paleo.
This week was not the best for me pain-wise. I am thinking the inflammation is related to the grain flours/cheese…major bummer.
Ah well. C’est la vie.
Caio, Friday night pizza!!…..sniffle sniffle.
Fortunately, there are some paleo goodies around…
Awesome post. I agree! I’ve only been diagnosed and GF for about 6 months (just in time for the craze, right?) and so many people come to me and say “Hey, I saw they have a gluten free isle at the grocery store!!!” And I say “Yep, they’ve had it for years. It’s called the produce and butcher section!”
I was one of the small population of Celiacs who actually gained weight instead of losing it prior to diagnosis. So I was no waif going into the GF lifestyle and I did fall prey to the snicker doodle cookies, cake mixes, and way too many M&Ms (don’t judge me).
To that point though I do add certain grains to my diet like quinoa, chia and hemp. Chia and hemp have quite the nutritional value. I also juice 1-2 meals every day. Usually a beakfast-fruity version and something with many veggies in the afternoon or evening. Juicing has really helped get the vitamin levels back to a healthy range without all the ruffage hurting the already-fragile system.
I do still keep the Glutino pretzel sticks in my desk for when I’m working and can’t escape for a healthy meal…and M&Ms 😉
“To that point though I do add certain grains to my diet like quinoa, chia and hemp.”
Hon, do not mean to interrupt here, but
quinoa, chia and hemp…are all seeds, not grains.
Enjoy them all –full of protein! yum!
I have come to realization that being gluten free was limiting myself. And that even if it is labeled gluten free, the only way I really can trust it is if I make it myself. This has been my struggle in a gluten world and feeling limited to what I can eat, to being in control of my food choices and only eating whole foods!
This is EXACTLY how I feel. I have a 6 year old who was diagnosed at age 5. After going through all the CRAP replacement foods to try and supplement for the things she missed I realized they were just as toxic. Are goldfish really part of a good diet? Do you REALLY need crackers? To what food group to snack bars belong exactly? It was a true eye opener.
I cried my eyes out the day we got our diagnosis. I saw a life of denial and misery for my daughter. I now celebrate the diagnosis. My daughters eat lean meats and seafood along with veggies and rice or potatoes. No chicken fingers and macaroni and cheese! Why replace junk with GF junk!
I’ve always been baffled that America insists on feeding its children complete crap. And then we wonder why as adults its so hard to eat healthily. Food memories are powerful and those associations are made when we are very young. If you teach your child pancakes on Saturday morning is love you can’t be surprised when pancakes become therapy later in life.
“After going through all the CRAP replacement foods to try and supplement for the things she missed I realized they were just as toxic.”
[Nodding my head]
nodding here too….
Sorry to disagree Kim but i think you are way too restictive. Lighten up a bit. Your post made me tense and I am not even your child. I am American & find nothing at all wrong with a child associating Saturdays with pancakes or Sundays with bagels (yup, jersey baby). Though i can’t eat it, i let my eight y.o. enjoy it. why not. If in this life you can enjoy a certain food, go for it peeps! Everything in moderation, yada yada yada, but if i could eat a tastykake right now, bet your ass i would….
side note: thoughts/prayers to my jerseyans. *sigh* We will rebuild and be stronger…
We each have our own path, but I know if I can occasionally have something processed, it feels like I’m not so deprived ALL the dang time.
Personally, I feel like I have a better diet than before my CD diagnosis. I’m trying to eat the right thing, before, I didn’t give it much thought.
You have no idea how restrictive I am. You assume. Again we associate love and caring with food and the worse it is the more we love our kids. My kids get Pirates Booty, they get those awful GF creme filled cookies, they get treat – I completely understand moderation. But i can tell you that a typical American child’s diet consists almost exclusively of processed foods and few whole foods. Just take a gander at ANY children’s menu. I LOVE my kids by paying $5 a pint for raspberries and blueberries. I love my children knowing that healthy food can be GREAT too.
I find people get so defensive at the mere suggestion of feeding kids like we want their bodies to last past 50.
Kim, you are doing the right thing by your wee ones and I am standing up right now and applauding you! Yaay!!!!
There are paleo/primal treats that are devoid of sugar and would be a “treat” once and while, too.
Anytime I hear a Mom is offering fruit as a treat, well, I am just so impressed.
Good for you, honey!! I wish I had known as a kid
( or my Mom had 🙁 ) what I know now about taking care of the human body with unprocessed whole foods. My whole life would have been different…. and healthy.
CHEERS for you, Momma!! 🙂
“i think you are way too restictive. Lighten up a bit. Your post made me tense and I am not even your child. I am American & find nothing at all wrong with a child associating Saturdays with pancakes or Sundays with bagels (yup, jersey baby).”
Ohh, sorry…I am American, too….and I find a LOT wrong with associating any fattening, wheat –laden food group for anyone –(especially a celiac— which her child is) with “happy weekends”.
This why this country is full of overweight, diabetic, SICK people! Look at the statistics.
You also said:
“but if i could eat a tastykake right now, bet your ass i would….”
Well, you are not getting what this crap does to our bodies then.
Sorry, but any celiac should not be thinking “tasty kakes” (whatever those are) are a good thing. Are you a celiac?
I find your post a bit abrasive and judgmental.:(
Do not judge Kim for doing the right thing by her children. I think she is doing an exemplary job.
On a side note, totally separate from our discussion…My thoughts are with you and all the people of NJ
Thanks for the support guys! We CAN raise kids with great healthy attitudes towards food! Tasty cakes aren’t love for celiacs!
FANTASTIC! Glad someone finally had the guts to say it!
Long overdue Sue…thanks.
I am gluten free, soy free, casein free, and corn free…you think gluten is hard, try avoiding the corn !!!! It’s in everything,literally, and there are no labeling laws because it’s subsidized….if i want something junky i have to make it from scratch…if people had to make all their own junk food they would rarely eat it….you know all those words you can’t pronounce and need a special dictionary to interpret ? that is what’s left out if you make it home..i mean it’ still junkier than that chicken breast with asparagus, but at least you know what’s in it …i am happy with my meat, veggies, and fruit most days but sometimes i crave chicken nuggets… everybody has to have individualized treatment ..what works for some may not work for others….i wish you all the best and good luck with finding the right path for you !!!!!!!! may health and wealth be yours in abundance !…( boy do i need some )
Yesterday is the 2nd time I’ve made “Pamela’s” gluten free flour blend for the bread machine, machine is brand new, and after one slice, and a few hours later, I had what felt like a gluten episode , I also have problems with the brand Udi’s.
I think I am allergic to something in it or that the ingredients mimic gluten so that my gut thinks it is glutented.? IH, I think I remember you saying this is not possible….so I’ll go with WTF.
I have no problems with KInnickick, brand bread. (sp?)
I have made bread for the gluten cycle on the bread machine via bread machine recipe, and have felt simiarly iill as with the Pamela’s blend. I wonder if it is xantham gum. ?
I guess I will never know, I will order the Kinnickicick. However, I noticed on their website that they have altered their recipe recently, for a more firmer bread. and wonder if I will react from that. I was grain free for a bit, but really wanted a sandwich, and that is why I made some Pamela bread.
GD, I bought some trident sugarless gum recently, and within 15 min, had to run to the bathroom, now i feel I can’t have any artificial sweeteners, which I was ok with before.
This crap (pardun the pun) never ends. I’m 56 now, and all the years of non-diagnosis is catching up with me. The way I see it, by the time I’m 70 I’ll be drinking triple distilled buch mills, with some hard boiled eggs, and farting, which will keep weirdos away from me, whom I seem to attract most of my life anyway. Not you guys here of course.
“I think I am allergic to something in it or that the ingredients mimic gluten so that my gut thinks it is glutented.? IH, I think I remember you saying this is not possible….so I’ll go with WTF.”
It’s entirely possible you are intolerant of something in it. If you were allergic, you’d have anaphylaxis & headaches. I did not say that was impossible, sweets; I said the so-called “cross reactivity” thing about gluten is just a theory.
Several of my friends with DH have issues with fish (citing iodine as a problem) and packaged & processed foods because of the dairy, the carageenan(seaweed) and the xanthan gum as problems. They can’t eat the packaged breads either. Xanthan and guar gums are laxatives, BTW–which is why many people think they have been glutened because they end up in the loo after eating too many GF products. Xanthan gum is used to stabilize GF baked goods because otherwise, cookies, cakes, breads—would just be bricks.
You may have to make bread from scratch, hon. Sorry.
glutenfreegoddess has some ideas:
Those artificial sweeteners like xylitol—same thing: natural laxatives.:(
…..and if you’re gonna be drinking booze, eating eggs and farting at 70, how the hell will I be able to sit next to you on that beach and watch the cute guys walk by? Skip the eggs, eat meat ….”grunt”.
I’ve doing alot of Gluten Free baking lately and experimenting with recipes. My latest recipe was Chocolate Cherry Chocolate Chips. I used a mix of gluten free flour(Bob’s red mill) and Coconut Flour. I used dairy free chocolate chips. I mixed ground flaxseed with warm water into a paste and used that instead of eggs. I used Coconut milk with pre and probotics instead of regular milk/butter. I also used an organic pumpkim pie mix in one batch.
I usually bake on the weekends and freeze. So, I have safe healthy treats available at any time. At least i know when I bake and freeze it’s safe and has no preservatives.
if anyone has any GF baking tips, please pass them on. I am gearing up for Thanksgiving.
One bread that bothered me, I did make from scratch in the new bread machine, the other one was the brand name Pamela’s gluten free bread mix. The bread machine recipe itself called for xanthan gum, and Pamela’s has it in their formula, hmmmm.
I’m in favor of the “theory” that certain grains can mimic a gluten response.
I know that artificial sweeteners send me to the toilet with gut cramps, I have never put that in the bread.
Chewing gum was the most recent episode of oh shit, (pardon the pun,) now I really know these sweeteners kill me.
I have made a few recipes from Gluten Free Goddess, but I haven’t made any of her bread recipes, thanks for the link, IH.
Ok, I’ll eat some chicken instead of eggs, all grain fed of course, tenderly raised on a farm with hula girls dancing, ukulele’s playing softly while a balmy breeze caresses their feathers.
sugar-less products use fake sugar which are known to cause diarrehea in anyone, even those with a healthy gut.
I once ate four pieces of sugar free chocolate and thought I was doing something healthy. Well, i was in the bathroom pretty quick and that’s when I read up on Sorbitol and it’s laxative affect.
I’m not sure if this has been mentioned here or not, but I’ve read somewhere (sorry I don’t remember where to reference it) that ENRICHED RICE has traces of gluten in it. The binder that binds the vitamins to the rice is gluten based.
There are gluten free rices, and rices that aren’t enriched.
Just a thought.
Please, people stop posting this “stuff” unless you can VERIFY it.
Rice is gluten free.
If there were any wheat at all in the box or bag of rice, it would have to be listed as an ingredient to adhere to the labeling laws. Enriched foods are generally enriched with vitamins and minerals to replace what was lost in the processing of the food. I have never heard of wheat being an issue in the enrichment process and it is not an issue which you see on any reputable medical information having to do with Celiac Disease.
Verification for the Gluten police: Gail Warner, Cinical Nutritionist
And you won’t have to worry about me posting anything here anymore. If you know it all, you can have it.
I do not “know it all”.
I just know food labeling laws. 🙂
Plain unflavored Rice is GLUTEN FREE
Read this, please:
The site says rice is GLUTEN free.
Celiac specialists say: Rice is gluten free.
Don’t you think if enriched RICE were a GLUTEN FILLED hazard to celiacs —-that it would be front page news?
Food labeling laws are in place for a reason.
Here is what your source wrote:
“I decided to look more carefully at the gluten-free foods that she was eating. Many of them contained either soy or rice. Was it possible that she could be allergic to soy? We eliminated the soy from her diet. The bloating and gas disappeared but she was still tired during the day. I then learned that she was consuming rice with her daily meals.After some research I found that there is a lot of debate as to whether rice is gluten free or not. The concern is not with the rice itself but with the coatings that are applied to the enriched rice to add vitamins. Rice itself is gluten free, but enriched rice is not because it has been sprayed with a vitamin coating and the coating could contain a gluten based grain. Therefore, we decided to eliminate the rice and her energy level began to improve.”
well, maybe it is because this woman simply cannot handle any grains?
“COULD contain a gluten- based grain”. Those are her words…. and so,”It must be wheat gluten??”. Nope. Could be corn starch.
She says it…but where is the “product label” that say this is so? If WHEAT is used, IT will say so on the package!!!!
I am sorry if one person’s blog is all you consult as a source.
I try to help celiacs recover…. by providing accurate information.
And if you want to call me the “gluten police” –well, I consider that an honor. 🙂
The day the G dude asks me not to post here anymore, I will leave as he requests —because I respect him so much. As I think he respects me. Otherwise, I will post what I know to be true.
As always, I wish you the best.
Don’t feel that way Karen—-I have found in our 7 year journey with Celiac that every site talking about food has that ONE or TWO people that think they know it all because they can quote scientific journals or studies. Well, my family never made it into journals and we have never been part of a study, but I will always offer our experiences to someone struggling with this diet!
The diet is VERY personalized, as it seems there as many varieties of safe diet as there are Celiacs. No–we can’t eat eggs from gluten grain fed chickens because SOMETHING is getting through to the egg. We also can’t eat grocery store meats—because again SOMETHING is in it or on it that gets us sick. If the vitamins sprayed on rice are derived from a gluten grain—they do NOT have to say so on the package and a Celiac CAN get sick from it. YES—I can also,say without any doubt that our reactions are most definitely gluten reactions and not some other allergy. My son and daughter have very severe and overt gluten reactions: migraines, bone pains, joint pains and dislocations, spontaneous and severe bleeding and horrible mood problems—-this is how their bodies break down from eating gluten and this is what happens to them if they eat wheat fed chicken eggs, among other foods that other Celiacs chow down with no problems. Even Dr. Fasano had no answer for me, because the average Celiac who can eat all grains and other packaged garbage seems to be the norm in the Celiac circles with people like us left to be labeled as ‘crazy’ or unaware that we have other food allergies.
Just because someone has been on this diet for 20 years and is a chemist or scientist does NOT mean you can eat what they can without getting sick!! We can never let our voices be silenced by the know-it-all bullies who want to silence our ‘kooky talk’ about the specific things that we react to and they don’t. The cross reactivity theory that has been denigrated as not real science here and only promoted by a lab that wants to sell more tests quite literally SAVED my life!! I cannot tell you how sick I was and how ready I was to just lay down and die before I took coffee out of my diet!! I never took a Cyrex lab test because my body healing within days was the only answer I needed—–but I sure am thankful for that apparent ‘quack’ of a chiropractor who made his video explaining cross reactivity available online—because I took a chance and took his advice and found out it was the truth. I have since tested the coffee cross reactivity theory out numerous times in numerous ways with the 3 of us in the family who react to coffee, and I can say without a shadow of doubt that coffee IS a cross reactor for US. If somebody else is drinking coffee and is still sick—-I would never hesitate to suggest coffee could be a problem. My theory is—-‘Whatever it takes to achieve health’. And if somebody wants to object, that’s their problem!
Very well put! I totally agree with you. It is so different with each person’s body. You have to be really aware and willing to listen to your body, even when others are telling you it can’t be possible.
If I could step in for a moment here…
I think we ALL agree that if a specific food item doesn’t make you feel good, it should be eliminated from your diet. Period.
But that does not mean there is gluten in it. It just means your body has a hard time digesting it. That’s why I’ve given up dairy, soy, corn and most of the processed crap.
What we want to avoid is gluten paranoia. That’s all.
Thanks to everyone for your continued input and for keeping it civil.
Hi Gluten Dude, I’ll keep this short and of course respectful since its your blog, but I think we all kow the difference between trouble digesting and a full flare of bone pain and joint problems or eczem or whatever is our personal reaction to gluten acting as a poison in our bodies.
It’s fine to wary of ‘gluten paranoia’ , but the reality is TOO many companies aren’t telling the whole truth about gluten in foods or if gluten has come into contact with said foods because of labeling loopholes, or simply saying that something has no detectable gluten even if it is made from a gluten grain! I just came across this with some raisins—yes, organic raisins—that my son got really sick from. I called the company and raised a big stink, and thankfully they really care about their GF customers and customer service in general, and so I ended up getting the REST of the story—about their sourcing from distributors that don’t disclose every ingredient, especially if it is less than 10% and also how they don’t have to label An ingredient if it is less than 10%. I had to make her aware that 0% is the only amount of gluten a Celiac can Tolerate.
My point is that if you are getting your typical gluten response as opposed to just a little upset digestion, its worth it to thoroughly investigate the food product and the company to get the whole story—factory conditions, certifications from outside suppliers etc. gluten IS hiding everywhere because wheat is very cheap and govt subsidized and unfortunately the majority of the outside world doesn’t really understand it to the depth we have to. 😉
I don’t eat out often either. I’ve also stopped buying most packaged gluten free food, I was getting fed up of being excited at the promise of gluten free, which indeed the ingredients were, only to find they had been handled or processed within premises that also handle or process gluten products. I do love the Schar GF crispbread it really is yum and it gives me that crunch I sometimes crave.
Understood and appreciated Katie. Everybody needs to do what works for them and be as diligent as they find they need to be. We all want the same thing…to feel good.
I would suggest not eating anything processed, or in any kind of packaging, unless it is a dedicated GF facility. Brand name that comes to mind is Kinnikinnick, and allot of other ones are out there. That eliminates the issue. For ex., Rachel Ray’s beef and chicken broth states, “Made in a facility that may also process dairy, egg, tree nuts, wheat, peanuts, soybeans, fish and shellfish. NO MSG. GLUTEN FREE.” I would not use that broth.
Since you mentioned raisins, Sun Maid raisins tell it like it is:
Thank you for your recent inquiry regarding our Sun-Maid products. We appreciate your concern over a possible connection between our product and your health.
We do not pack any products containing gluten at our Kingsburg plant. There are no additives or preservatives in our Sun-Maid Natural Sun-Dried Raisins or our Zante Currants. When the raisins are ready to be processed, we clean the raisins using large aspirators (vaccums), graders, and shakers to remove stems, dirt, and other foreign objects.
We then do a very thorough washing in fresh water which not only rehydrates the raisins, but also serves to move the raisins along the conveyor systems during processing. There are no additives used to coat the raisins.
Some of our dried fruits are packaged at other plants that also produce products that contain wheat. These products are labeled where appropriate with the statement “Packed in a facility that also packs.,” which can be found just below the ingredient statement on the package.
Thank you again for your interest in our products. We invite you to visit our website, http://www.sunmaid.com, for delicious recipes, health and nutrition information, the history of Sun-Maid and the Sun-Maid Girl, our full product line and much more!
Sun-Maid Growers of California
I think I also read that enriched rice can contain gluten because the vitamins that are added are or can be in a gluten base. Some vitamins have gluten. I just don’t buy enriched rice just in case
Just be careful order rice at a restaurant. Restaurants Cook rice in chicken broth. Chicken broth isn’t always gluten free.unless you are ordering off a gf menu. That’s how I got sick recently 🙂
I can eat rice with no problem, it is one of the only foods left on my list that I can eat and not have an issue. Therefore, it is ok for celiac’s to eat rice. I am thankful that the “gluten police” are out there.
Linda has a great point. I never thought of that before, but I don’t eat out anymore, so not an issue for me. Also, here in Hawaii, most people like “sticky rice” which would not be cooked in broth, …just water.
IH, thank you for keeping us all well informed.
There are many blog articles written by Tricia Thompson, M.S., RD She is a nutritional consultant, author and speaker specializing in celiac disease and the gluten-free diet. She is the real “gluten police” in my book.
She tells it like it is, providing the most current research and information on topics such as : Allergen advisory labeling, confusion over Codex standards, European Union gluten-free regulation, food labeling questions, barley enzymes in gluten-free products, finding gluten-free oats, the truth about flavorings and extracts, and the over-the-top concern over personal care products.
Other hot topics are also discussed: Vinegar, Vitamin E from wheat germ oil, gluten in adhesives and “Ensuring your food is gluten free”. (She never once mentions rice, door knobs, stamps, envelopes, toilet paper, bus poles, TV remotes, other people’s clothing, dish soap, dogs or public toilet seats as a threat to celiacs.)
People can look for “zero gluten”, but sadly, it just does not exist.
We live on the Earth, which is one big giant shared facility. The best we can do is buy from local farmers and butchers and certified GF facilities. We eagerly await the passing of the mandatory gluten labeling laws!! For now, at least we have disclosure of wheat and many companies provide the voluntary “processed in a facility with” statements. (I avoid those like the plague)
And for the record, I have never called anyone a quack, a kook or crazy –as was implied. I have said repeatedly that I support anyone’s decision to remove or add foods that they feel is harmful to them. I do it myself. I do not appreciate having words put in my mouth. This makes me feel very sad.
And I really do not appreciate being painted as a bully or a know-it-all just because I provide celiacs with current research. Here’s the thing: Take it or leave it.
When Sassy coined the term “My Celiac is Not Your Celiac”, she used it in the context of people who heal quickly vs. those who do not (such as herself…and me ) when some celiacs questioned our fellow celiac Jennifer Esposito for needing a break from a heavy duty work schedule.
I doubt she wanted it used to justify living fearfully. And I doubt she wanted it to be used as a verbal weapon against another celiac. But I’ll ask her to please correct me if I am wrong.
For 2 years, I have devoted my energy to helping others on this shared journey. No one has ever called me names or questioned my motives before. And I do this with severe joint, bone, muscle and nerve pain—while rehabbing my muscles in physical therapy twice a week–which I incurred as a result of a lifetime of undiagnosed celiac. Why? Because I just wanted to share what I have learned during the last 5 years.
I think maybe I’m about done.
Best wishes, everyone!
HUGS to you IH! You have helped me numerous times. I value all of your posts. Thank you for taking your time to always give me your personal experience, your great advice and your reading materials as I continue to try to heal.
Irish…you’re appreciated by the masses more than you’ll ever know. And you help more people than anyone I know as well.
Yes I agree with Gluten Dude Irish … you are very very appreciated and we would all dearly miss you if you did not give us your insights, thoughts and experiences. I , for one, have learned so much from YOU and Gluten Dude …
Please don’t disappear … that would hurt my heart.
Sherri, Cam, Dude, Jules, Linda
I am glad if anything I said has helped in any way.
You cannot believe how many people are in need out there.
You know I also help on Celiac.com— and despite what some people say about that site— there are many celiacs who work tirelessly to help others on there. So many sick and sad people send me private messages every day. It’s just appalling how many people are left unDxed and this needs to stop! And, once DXed, they need solid info and a chance to start LIVING.
I get tired of the gluten paranoia weirdness. People get stuck on something and do not consider other possibilities for their continuing symptoms, so they post erroneous information.,,, “gluten is in everything” –NO, IT IS NOT!
If coffee were a danger to celiacs, I’d be dead by now. Period.
I feel for people and their struggles, but there comes a point where everyone needs to say “this disease does not define me or confine me and I am getting back to LIVING!!!”.
One woman told me she was scared because of “what could happen down the road” because of long unDxed celiac. I told her I do not think about 5 years from now because that takes away from enjoying TODAY.
I just got “me” back after years of illness. I am not “borrowing trouble”
None of us are clairvoyant and tomorrow is not a given. FOR ANYONE.
If you follow a strict gluten free diet, your chances of developing lymphoma reduces to the same as everyone else’s. Get it? 🙂
If you need to take out soy, dairy or anything else, do it. I did.
G dude did. It’s no biggie. I eat plenty all day long.
But she also said she felt there was a “sword hanging over her head” …Poor babe ….so, I said “Take that sword from above your head, put it in your hand and slay the beast…You are in charge! ”
She wrote back :” I am loving this visual”.
It’s called EMPOWERMENT. Not fear.
That’s all I got, guys.
Thanks for the hugs and the love.
I think I may need a vacation.
Just the message I needed to read today. I returned from having a biopsy of my Uterus because of strange blood work and early menopause symptoms. But I wont let the fear define me.
Dammit….you’re going through all the crap I went through–sorry.
Very early menopause, horrible symptoms, endometrial biopsies–and reproductive problems & miscarriages–all celiac related (yes, there are tons of articles on it; this is not just speculation) and here is the thought you need to carry: Tell yourself “I can deal with whatever comes my way”. My biopsies turned out negative, but I had to have a complete hysterectomy eventually because of complications and scaring from so many miscarriages and D and Cs.
Celiac creates more problems than most people realize. They think it is “tummy troubles and bowel issues”. It’s a head- to- toe disease.
I had breast surgery back in 1998 to remove a mass. It was benign, but I have to have mammograms every 6 months to a year (depending on the pattern of cells and calcium deposits she sees on the films) as a precaution. I honestly used to freak out about it, but now, I just look at it as “precautionary maintenance”. Every time the doctor looks at my films with me and says “No change” and says “ok, you can go—see you next time”, I say “whoohoo! ”
I do not let fear rule me because it a waste of energy. If something is going to happen, it will happen –and fearing it and worrying about “what may happen” will not prevent it.
Chances are, it’s nothing.Try not to worry too much. You need your energy.
I will hold all good thoughts for you. 🙂
Yes, the Doctor did say she could by the lining it does appear that I am in what she would consider an early menopause as I am only 45. I have two sisters. Both are over 50 and neither has gone througt it yet. It’s just another thing on the list. Everyday something crops up. It’s really unbelievable.
Just when I think I have everything at a managable level something else happens or gets layered on. The bright side is I am finally absorbing nutrition through food. I’ve lost 75lbs so far and continue losing. The Doctor told me last night I need to eat more or start drinking protein shakes to keep weight on. Hard to do when I have no apppetite and worry every time I eat something.
I feel asleep last night thinking of thoughts and remember that I wouldn’t let the fear control me and hijack my life. So, life goes and so will I . But, I am also learning to let myself be sad if I need to be.
Thanks for your kind words. Believe it or not it does help to know others have been through the same thing. I am not crazy to think Celiac Disease and all the trauma my body has been through in the last two years(losing 75lbs) did indeed push me into menopause.
Have a great day and thanks for your support
I started peri menopause at 39…my mother was 35. Crazy, huh?
I dropped 90 lbs.before my DX. It’s just insane what can happen with this thing. But no, you are not alone. I hear this from women all the time.
Your doc is right. Consider supplementing with protein shakes, hon. You need protein boosts all day long to keep yourself from feeling “yucky”.
Please do not fear food. A celiac’s body pre-DX is already in starvation mode. Now, you have to replenish it.
You just hang in there– and know that each day, your body is essentially “re-booting” itself. You are healing and many of the menopausal symptoms will be less troublesome as a result.
Take care, hon.
I for one think the “Gluten Paranoia” has gotten out of control. This is only Celiac blog I read because all of the “Gluten Paranoia” I read on other blogs stresses me out. I think the stress of trying to avoid all possible gluten sources causes more harm and illness in my body now than the minimal guten exposure I may have on occassion.
I will not even entertain that thought that I can’t eat eggs because they were feed gluten. But, I buy vegetable fed eggs with Omega 3 because it just is healthier. I won’t entertain the notion that I can’t eat beef I bought at the shoprite because it was fed gluten. But, I’ have been buying Grass Fed Beef more because it’s organic and healthier. But, that’s just me.
I am choosing to move forward basing my choices on science like Irish Heart and ignoring the bloggers and people who feed paranoia.
For the last month I’ve been struggling with reactions that seems allergic in nature. I assumed it was gluten. Guess what? It’s not. My ImmunoCAP blood tests came back positive for low level allergies to shellfish, nuts and sulfites. I’ve been eating all of them. No wonder I felt bad.
I feel for anymore who wakes up feeling bad more days than they feel good. I empathize for those who struggle for find an answer to their poor health or who have kids with these issues. It’s not easy.
But, being paranoid and stressed by gluten isn’t going to help. I am learning to focus my energies on healing my gut and choosing foods that are good for my belly such as foods with glutamine and omega 3. Less grains, less dairy, more meats and whole foods, veggies and fruit.
I hope everyone has a great day and feels good.
Very well said Linda…thanks!
I agree … Well said Linda 🙂
Thank you for that.
“I think the stress of trying to avoid all possible gluten sources causes more harm and illness in my body now than the minimal guten exposure I may have on occassion.”
Congrats for being your own best advocate! 🙂
Many celiacs have food allergies in addition to celiac and getting tested by a reliable lab for food allergies (distinct and different from those bogus food intolerance tests) is a great idea!!
I hope you continue to heal and feel better and better.
Rock on, girl.
Being stressed does nothing for us. It causes wrinkles (who needs those–ick?) 🙂 and it messes with our hormones (male and female)
Stress causes pro- inflammatory cytokines and that just makes things worse.
Sorry to anyone who doubts the science or the biology or the reality of this autoimmunity response—- but dat’s da truth!!
Linda, be well, sweets!!
Great advice on self empowerment and living today.
I do have a question, what real food allergy vs others do you recommend? I am aware of elisa but uncertain if its any good.
My doctor ordered ImmunoCAP blood work which is the new improved RAST. Ancient had to do. 30 day elimination diet to clean out my system.no wheat /gluten,shellfish, nuts,citrus fruit, nightshades, peas, soy, dairy, eggs or corn for 30 days
Sorry for the typos. Not easy typing on my cellphone
Sorry people—didn’t mean to barge in and come across as a total jerk!
My family suffers more than any other Celiac I am aware of—following the same diet as the family that helped us get diagnosed in the first place got us sicker than ever. I am only sharing things that have helped us get better since last fall. I’m not trying to spread ‘gluten paranoia’ at all, because this IS our reality. It’s a shocking reality even for us—–the only things we can buy at the regular grocery store are fruits, veggies, milk and household stuff. Everything else we eat comes from either hunting, special orders or online shopping.
If we followed what Tricia Thompson said was safe, even though she really is on top of things, we would still be sick. Forget Celiac.com—-we’d be dead! The only reason I barged in to spread my knowledge here is because of the original topic—don’t eat GF foods. I agree with this for the apparently small percentage of us who get worse on GF, don’t heal and then end up with horrendous leaky gut and can’t eat anything! No—we’re not your typical Celiac, but if I can help at least ONE more person figure things out, I’ll do it, even if its upsets the Cekiac Applecart.
I will just say that those of us who do react to strange things, and I mean a true gluten reaction and not other types of symptoms, get booted and hollered off of every.single.other.board. Every one. I left off even giving my 2 cents on any topic like this years ago—I just had to do lots of searching on my own to figure it how to help my family because there was NO ONE that would help or take my concerns seriously. Now I have answers and will always be more than happy to share them for the desperate among us, even if it doesn’t jive with any scientific studies….cuz WE live with this every single day of our lives not the scientists.
I could not agree with you more. GF starches—even though I do indulge in them are as unhealthy as the gluten we are escaping. I go in the direction of the paleo type diet. It works for me and I don’t feel weighed down by starch.
It has made a serious improvement in my health (and my weight). Those are the facts.
Hi.I’ve heard Elderberry Syrup is good to take to boost the immune system and prevent colds and flus. However,I also heard it’s contraindicated for people with auto-immune diseases. I have Celiac Disease and not sure if I should take it and my Doctor isn’t really familiar with Elderberry Syrup. Can anyone here offer any insight?
Linda, I have a friend who makes it from scratch locally.
I have not had issues with it, but believe that 3x cups of decaf green tea have emperically worked better for me At avoiding colds at least.
A ancient Accupuncturist I used to see told me about green tea.
Didn’t believe her, but did it anyways and can’t complain about its results. My wife (who doesn’t believe nearly any advice I may have ) no does one big 2cup measuring glass with 5-6 bags worth when she works around school kids .
Hey Gluten Dude and GF family: Thanks to all who post the “this is what works for me”. Gluten Dude: I appreciate your honesty and passion for helping others.(And your sense of humor!).
I’ve been lurking for some time and wanted to post my thanks to the community. I was diagnosed celiac 20 years ago and am delighted to continually be learning about ways to heal myself.
And, being a celiac still sucks… but community helps!
Glad to hear from you Jean. Don’t be shy 🙂
I am blown away by the conversations here . . thank you all so much. What are some suggestions in regard to beverages? Other than coffee, green tea and filtered water, I am at a loss.
You’re always safe with Titos Vodka 🙂
I only drink water and black coffee.
Kendalll Jackson chardonnay does it for me.
rum too, However,
in the morning, hot water, lemon and honey. perfect combo
You could always add the rum to the hot water and lemon. Would save you an extra step 🙂
🙂 just what Jules needs… hahaha
gee, I’ve never thought of that! GD, you come up with the best ideas.
I read somewhere to be cautious of tea because gluten could have been used to seal it.
Yes, Susan, I have read that also. A wheat paste is sometimes used to attach the paper label together over the string attached to the bag.
With all due respect, this is just a myth.
Like postage stamps, wheat paste on wine barrels, glue in envelopes and toilet paper rolls–NOT a hazard to celiacs.
Glue —does not mean gluten.
Sorry to sound so abrupt, but unless you can provide a valid source for that kind of info, you are unnecessarily alarming celiacs.
There could be residual barley in some herbal teas, so choose wisely.
I have seen malt added to tea bags in Ireland, but wheat is clearly labeled on the package.
THIS IS NOT JUST A MYTH!!!
Heads up my GF tea drinking friends because it is true: gluten can lurk where we least expect it: in our cups of tea. Tea nerd alert: tea is actually camellia sinensis, a specific shrub, and herbal teas are typically infusions and do not contain any actual tea. If you stick with straight up tea, you know you are getting a cup of camellia sinensis, whether that tea is black, green, white or oolong. But what if you want a comforting caffeine-free beverage made of an infusion of herbs, flowers, bark and leaves? What could possibly contain gluten in herbal tea?
Cue the scary music: Barley malt is considered unsafe for those with celiac disease and gluten sensitivity and is used as a sweetener in some herbal teas, such as Yogi Tea’s Stomach Ease. From Valerie Crowley at Yogi Tea: “Barley malt is in only 5 of our 56 flavors of tea. It is in the Calming Tea, Stomach Ease Tea, Fasting Tea, Kava Stress Relief Tea and the Decaf Roast Tea.”
Another tea to look out for is Tazo tea, which is served at Starbucks. Phone calls to two locations in Sonoma County revealed that the baristas were not aware of any gluten in their teas. My super sleuthing led me to learn that Green Ginger filterbags, Tazo Honeybush filterbags, Lemon Ginger juiced tea and Tea Lemonade juiced tea are not gluten free.
I know…it’s horrifying. In a few teas – all Celestial Seasonings thus far – I’ve found the phrase “Contains Gluten” and been really disappointed. Mostly because I’d already bought the tea. And the worst part is that the ingredients don’t list anything glutinous. Yes, I bought Sugar Cookie Sleigh Ride tea, but the ingredients only listed sugar cookie flavor, so who would think that includes actual gluten??
Traditional Medicinals Tea has only 1 tea with Gluten in it. I love this brand. I buy it at the local organic market. I like the Ginger aid.
See their statement about gluten from the FAQ page of their site.
Excuse me, but
I think if you read what I wrote carefully,
you will see I did say BARLEY can be in herbal teas.
It is not a law that they need to label Barley, so I also said “Choose wisely.”
Anyone with celiac knows they cannot have barley.
I said the “glue has gluten in the bags” is a myth.
Okay, Irish Heart, I truly thank you for the clarification. Glad to hear it actually. Any suggestions on beverages?
I drink a lot of water, hon. Celiacs are dehydrated and we need it.
I do have decaffeinated coffee sometimes. Caffeine gives me heart palps. PLAIN coffee is GF.
I do indulge in wine or spirits, (they are GF, with the exception of some flavored ones)
Plain tea is GF. Watch for herbals with barely or malt in them. Some companies will label their teas “gluten free” –which is not mandatory, but generous of them to do so.
If you are asking about things like Pepsi,coke, etc? I don’t like those myself, but they are GF.
Orange juice, cranberry juice… most plain juices, in fact… are naturally GF.
This may help:
Because of Celiac Disease, I have a compromised immune system which means that I can not drink tap water without boiling it for two minutes first. Where I live, chlorination is the only form of disinfection. It’s not enough…chlorine will not kill most waterbourne parasites.
I drink green tea blended with local honey and lemon (cold drink) and coffee. I also have the odd lass of pure fruit juice.
Any of you also allergic to corn? I read somewhere that up to 40% of people with Celiac Disease are also allergic to corn. I have a confirmed allergy. I wonder if the allergy is related to the fact that almost all corn is genetically modified? I can’t drink fruit juice that has added Vitamin C because it (the vitamin) is often derived from corn. Ascorbic acid is also derived from corn and it is found in canned food, i.e. pure canned tomatoes contain corn.
Basically, I gave up on the mainstream food system (grocery stores). I eat whole food only. The most difficult part is thinking ahead because food preparation takes time. Ha ha I have no problem eating the same chicken stew or curry all week.
My diet is lean and healthy. If I could just get away from the computer and exercise more ha ha
I am not sure where this board is based but am curious to know if there is a certification process for gluten-free food in your area. There is no such process in Canada. I think it would be a good idea to have one, especially for restaurants.
I have been avoiding “gluten free” as much as possible for my family. Myself and my daughter are both celiacs, my other daughter tested neg with the endoscopy but her symptoms are worse than the daughter severe damage….go figure….
ANYWAYS, I have been dedicated to keep us as healthy as possible. Last year, I was “dying” until my final diagnosis. However, as you initially suggested, GF products are filled with crap. When you are first restricted and you find an outlet, one may tend to go overboard….as I did, and gained quite a few pounds.
Now, back on track and trying to heal still, I am focused on whole foods (though there are times when that is not 100% possible) and baking everything else from scratch. Not for me, but for the lunch boxes. I feel that if I am going to put a treat in the box, I want to know what is in it. The least amount of preservatives and chemicals the better. However…it does raise my eyes to what actually goes into these things and what we are really consuming. No matter how small….I do taste test 😉 and snag a portion here and there…but I bake and freeze. I bake bread…I have it…I don’t always eat it b/c I would rather have eggs with a side of ham and fruit than bread that is not as good as I remember. Though of course there are times I will have the bread. My life is not as obsessed with the things that I lost and HAVING to have the substitution. Also, the fact that making it takes a lot of time and effort, and when they are gone, they are gone until the next time they are made. So when the pasta is made fresh, we may not enjoy pasta for a long time, b/c it is so time consuming. Where in the past we would have thought nothing about throwing a GF store bought version into the pot.
It’s just remembering that they weren’t healthy before I got sick, their new counterparts after being sick are no different.
I had been on Weight Watchers for years, on and off….I always wonder what the “points” would be for some of these things…but I am too chicken to figure it out!
I am a big fan of baking and freezing. I usually bake cookies and muffins that are Paleo and GF. When I want a treat I feel so much better reaching in the freezer and eating something I made rather than going for the store version with ingredient names I can’t pronounce.
I am about 90% Paleo and have felt a shift in my body since switching to this lifestyle. My stomach as settled down and I feel stronger. However, I do occassionally eat store bought brown rice products, GF desserts from Whole Foods or use Bob’s RedMill GF Baking Flour. I also occassionally eat Diary. I LOVE Blue Cheese and just read an article that Blue Cheese produced in the USA is GF because US manufactures don’t grow on bread. I was happy. But, usually the only Dairy I eat are Greek Yogurt and Kefir both have probitoics in them.
I don’t make myself crazy about anything either. I try to my best. I didn’t gain weight with Celiac. I lost weight. I’ve lost 75lbs so far. Now I am trying to stop losing weight and working hard to try and keep it on. But, I never substiituted bread with gluten free bread. I just stopped eating bread. With that said, I just had Brown Rice GF cereal with flaxseed, hemp hearts, cinnaomon and Soymilk for breakfast. BUt, I do workout by doing Pilates, Yoga, Power walking, cross fit. And, the Paleo lifestyle lends itself to natural weight loss.
All you can do is try your best and it sounds like that’s what you are doing for yourself and your kids. The less stressed out we get about things the better our stomachs and bodies will feel. While it’s essential to be 100% compliant to Gluten Free the other things are individual choices that are made according to how your body and lifestyle works.
Great conversation here. Lots of good information. I am building an e-commerce business that is all about local healthy food. It’s almost ready to launch: ourlocalmarkets.com My issue with Celiac Disease is one of the main reasons that I traveled down this road. Here’s a news article about it: http://www.albernivalleynews.com/news/169708416.html
So far we have a local supplier for every category except “bakery.” We have about 100 products and almost all of them are gluten free (ha ha except the cereal and flour section which are 100% whole grains (old varieties)). The business serves Central Vancouver Island.
oops I didn’t copy the full link to our new business: http://www.ourlocalmarkets.com
Thank you, Irish Heart for the beverage info !
You are welcome, hon!
If you feel like reading my thoughts from few months ago,please go here:
I think gluten free food is tasteless and awful!
Some might question my bias for replying to this post since I’m a dietitian for a supermarket but I’ve been working with various celiac disease and gluten intolerance groups for the past 7 years, have set up gluten-free expos, talked to hundreds of people on gluten-free diets and urged many to be tested for celiac disease.
I agree with a lot of what you’ve posted…many packaged gluten-free offerings are bad – both from a taste and a nutritional perspective-but I am seeing positive changes in the industry with more use of better or ancient grains (teff, amaranth, quinoa, sorghum) , vitamin enrichment and better taste. Typically I encourage people to focus on foods that are naturally gluten-free – as you did in your 30 day trial- and not rely on gluten-free packaged items. As a dietitian when I look at your “before” diet I see a reliance on packaged/convenience GF foods and meals that were low in fiber(little fruit or veg), but high in calories. Your 30 day trial shows an increase in fiber and the fact that you’ve cut out most carbs (w the exception of fruit/starchy veg) probably explains your weight loss – surprisingly you’re probably eating fewer calories now – but are more satisfied.
Exactly Leah. I lost about 15 pounds and kept it off even after my Whole 30. And I do not walk around starving. It was simply eye-opening to me.
Thank you for posting your thoughts, Leah!
This was something many of us found out the hard way.
Packaged stuff = weight gain.
Post diagnosis, I could afford the first 10 -15 lbs as I was malnourished.
But to add 20 more –was not a very good idea at all.
Honestly, it happened so quickly once I started absorbing again, it took me by surprise.
Now, I am coming back down, having adopted a whole foods diet, cutting back on too many grains and baking from scratch.
I’m still playing catch-up, being new here, and just got to this post. I didn’t have time to read all the comments, so hope I’m not repeating. It’s not just the processed Gluten Free foods and it’s not just Celiacs. My husband is not GF and he feels like crap all the time. B/c he eats crap all the time. I’m like, if you want to have CHEESE, eat a piece of real, frickin’ CHEESE, not that crap in a jar. Even tortilla chips have 3 ingredients: corn, oil, salt. If you at least eat real cheese, it counts as actual food, and not just a giant list of chemicals. I’m trying to eat more whole foods and less processed stuff, and that’s good advice for anybody. But there are still days where I just can’t handle ONE. MORE. THING. And it’s nice to have the OPTION of having something I can chuck in the microwave, or a bar I can eat on the run.
I’m kind of bi-polar on the whole (manufactured) GF food issue. I know I should eat healthier, and I try, but darn it all if it’s my birthday, or I’m having a REALLY bad day, etc. I sometimes just want a freakin’ egg roll. And I’m glad someone has figured out how to do that GF and mass produces them for me.
I guess the main problem is when people think anything GF is automatically healthy just b/c it’s GF. If I know it’s unhealthy and choose to eat it anyway, it’s a free country. But if it is PROMOTED as healthy? Well, someone should punch them in the face.
I here you! I so agree! Whole Foods is the best. I’m trying to eat more whole foods, but the squashes and courgette/zuchini just is too green right now. Just be happy you don’t have my food allergies and intolerances because most GF prepackages stuff I can’t eat due to my other banned foods. ROFL I react to everything that walk on land, flies in the sky or is apart of the Cabbage or Mustard family, plus Allium and Alcohol/Vinegar. ROFL
One of the biggest problems with GF is that most people newly diagnosed still have leaky gut, so think that GF stuff is good for them. Actually, until their gut heals, they have a higher chance of reacting to the secondary Gluten Cross-Reactors, which include rice, corn and potatoes.
I have to interject here, with all due respect. 🙂
Maybe some people have digestive issues with corn, rice and potatoes, and maybe some people have intolerances or allergies to these foods, but I can assure you, there are no gluten “cross reactors”. The majority of people who are gluten intolerant can eat all of these foods with no issues at all, including me, a sensitive celiac (not my term, my doctor’s term–meaning someone who reacts to minute traces of gluten cross contamination).
Except for Tom O’Bryan, a few chiropractors and some bloggers who have grabbed onto this idea, including some well-meaning paleo bloggers, there is no science or evidence to support the unvalidated, non peer-reviewed claims of the people at Cyrex Labs that coffee, rice, corn, chocolate etc are harmful to celiacs. ( and I am not talking about the one researcher’s published papers who is on the Cyrex Labs board)
And no reputable celiac research centers, nutritionists or doctors validate these claims either.
I am not posting this to incite an argument. I post this for the people who may read this thread and start to worry that they cannot eat these perfectly safe food proteins.
This is correct—there is actually scientific evidence that corn and rice actually cause the same gut damage as all other ‘gluten’ grains. There is a site called The Gluten Free Society run by Dr. Peter Osborne http://www.glutenfreesociety.org/ that has links to these studies. Potatoes can be bad if you have secondary bacterial overgrowth and leaky gut because the complex starches feed the bad bacteria, making them even more damaging.
Many people with Celiac or Gluten Intolerance are better served eliminating all grains, as they all have the potential for gut damage. The original dietary cure for Celiac did actually eliminated all grains and starchy carbs with excellent results.
I went totally grain-free for almost two months and felt no different. So, for me eliminating all grains wasn’t the answer. So, I added them back in about a month ago and went Dairy-Free. Guess what? That did that trick. Apparently, Gluten and Dairy doesn’t agree with my belly. It’s not a Lactose problem because I’ve been tested for that and I do not have Lactose Intolerance. But, Dairy just seems to irriatate my stomach, causes gastritis and aggravates my acid reflux. Since elminating it, i’ve been enjoying Coffee again with no repeat.
Every body is different. It’s a matter of trial and error to find the right combination for your body.
Have a great day
Love this. When my daughter was diagnosed with celiac at 9 months old I emptied the pantry went to the store and bought nothing but fruit meat and vegetables mostly because Gluten Free food is expensive and we don’t have that kind of money. Not only did my daughter get better but my husband and I felt better to. Now I am not perfect, I’m a police officers wife and pregnant mom of an active toddler, I do slip now and again but for the most part my motto is “if my great grandmother couldn’t eat then neither should I”
I read this post a while ago and seriously because of this post it has “woken me up” and made me realize the obvious. Since, I’ve been eating whole foods only. I’ve cut out ALL processed food completely and it’s been about three weeks now. I cannot tell you how great I feel when I so often felt “under the weather” and could never figure out why…when I “thought” I was going gluten-free. I think that little bit of 5ppm or 20ppm may have still been getting to me, I don’t know, really. But what I do know is NOTHING makes me feel as good as just eating what the earth grows…fruits, veggies, chicken and fish is what I mainly eat. I’ll never go back no matter how tempted…the pain is just not worth the pleasure. Thanks for this post, it really helped me change my lifestyle.
can’t believe I’m just seeing this awesome post.
I know quite a few celiac/gluten intolerant folks who gave up on a gluten-free diet after continuing to get sick while eating gluten-free foods.
I got sick all the time until I cut out all the additives (those crazy ingredients on the back of the box that you have no idea what they are). Why do we think it’s ok to eat things like red 5 or potassium benzoate? Fun fact: potassium benzoate, besides being a common preservative in our food, is also what makes fireworks whistle!
Thanks glutendude for promoting whole foods and drawing attention to the ill effects some of the gluten-free processed foods can have.
I highly recommend watching “Food Matters”, “Forks Over Knives”, “Hungry for Change” and “Fat, Sick and Nearly Dead”. My favorite is “Food Matters” They’re all streaming on Netflix. I am now making my own juice and eating mostly raw salads/vegetables. I’m 100% feeling good. I urge everyone to try the raw foods diet and see how you feel.
I am so tired of feeling tired. I typed in “I have celiac and still feel like sh*t on the gluten free diet” to Google and your blog post was the first link that came up.
It is sad that in all these years of being GF (about 7 years since diagnosed), it has not really occurred to me that gluten-free foods are just substitute junk food for celiacs. I have just been so desperate to feel good in my own body that I’d eat pretty much anything touting it’s freedom from the evils of gluten. It’s like “gluten free” has become synonymous with “healthy” — and I totally bought into it.
I am looking into the caveman diet now and am going to give it a try. Thank you for caring enough about what we all go through with this diagnosis to share your experiences!
Giving up the processed gfree food has made a big difference. I am confident it will for you too. Good luck and please keep us posted.
I realized when reading a few recent comments from this post that this post was written in October. As I was only diagnosed with CD in June 2012, you can imagine this has been a challenging year. I thought I would give an update from my original comments on this post.
Well, most importantly, I found out going Gluten Free wasn’t the answer to all of my prayers. It was part of the equation but not the solution. I had stomach damage, nutritional deficiences and other allergies which were complicating things for me.
In September, I had four anaphylaxis reactions and didn’t know what I was allergic to. I had IMMUNOCAP Blood Test for 25 foods and found out I was only allergic to Shrimp. But, I will confess I was eating Shrimp like five times a week prior to the diagnosis:-)
In October I started a 30 elimination diet. I eliminated all grains, dairy(casein), eggs, corn, soy, nuts, citrus fruits, nightshade veggies and all shellfish. I reintroduced each food category in four day intervals with the exception of Gluten Grains and Shellfish. They are done forever. During the reintroduction phase I learned Peppers (all peppers) kill me. They give me gas, bloating and make me feel like I was “glutened”. I also learned the Dairy doesn’t make me feel very good. Althought I am not allergic to Diary, it does make me have sinus(nasal) issues, breathing problems and gastro issues. So, I no longer eat Pepper or Dairy:-)
About two months ago, I had a Colonscopy. They actually had to “power wash” my Colon because I had so much hardened stool stuck in it. They also found precancerous polyps, diverticulosis, irritiable bowel syndrome, slow bowel motility and kinks throughout the right side of my colon which was causing my chronic constipation. As a result I will be taking Miralax every day for the rest of my life to keep things moving along but that’s ok. Because I am finally on the road to wellness. I am finally feeling better and my last blood
tests were perfect.
I write this just to say there is hope. You just have to keep moving along and working to find out what combination works for you. Honestly, the addition of the daily Miralax dose has made a world of difference. Can you imagine how bad having hardened stool in my gut was for me?
This isn’t really what I imagined my life and health to be like at 45 years old. But, it’s not all that bad once you get it all figured out. The key is to keep a positive attitude and be your own health advocate.
Pepper? Who would’ve thought? Glad you found some answers Linda.
Yes, Peppers! lol:-) It was shocking to me especially because one of my favorite meals last summer was Shrimp with Peppers Stir Fry. Who knew both were making me sick and I was thinking it was Gluten…. lol:-)
I think that’s a key takeaway for this. There is a tendency for us celiacs to blame every health woe on gluten. Sometimes…it’s not.
I am 23 and having all of the same issues as you mentioned. Did your food allergies or sensitivities go away after taking the miralax continually?
Your diet looked like crap to me. Why would you complain so much about the gluten free diet because of this? You should know what foods are good to eat and which are not. The fact of the matter is, a diet that is made for 100% Celiac Recovery is the Specific Carbohydrate Diet and I am a suffer on the spectrum of Celiac Disease and know that it works more than normal gluten free. Essentially, your friend was good in promoting that diet, but the key take away is that we should not eat any grains or added sugars and you did not illustrate this.
Your stating the obvious that healthy foods make you feel better. No one, celiac or not, is arguing against that. Gluten free food is not a scam. Just like regular food, it is up to the buyer to determine what foods are right for their body. Of course they make gluten free junk food like those checks because poor people with celiac can only afford to eat those types. However, clearly there is healthier gluten free options among us.
Also, many people react to another protein found in nuts and tomatoes that resembles gluten in our body. To find out if you could be affected by this condition, there is a San Diego doctor who has a blood test for it. Your continued celiac conditions are likely either due to this complication or contamination or just not eating healthy foods which makes anyone feel shirty celiac or not.
Hope that helps clear things up for you and the gf community. I have been gf for 7 years and vegetarian for 15 and I feel great : )
Also for anyone who may also be skeptical if a gluten free diet is necessary. It is usually blatantly obvious. After 2 weeks I got my period back when I weighed 79 lbs due to my previously untreated celiac disease. If you truly have Celiac, contamination is a big issue and most feelings of illness are caused by contamination we are not aware of. If you only cooked at home and monitored your kitchen there would be no problems but that isn’t very realistic for most people.
Great post! I think that I am coming to the same realizations after a year and a half of being gluten-free and after trying so, so, so hard to stay away from gluten, only to still feel cruddy most of the time now. I eliminated the gluten and replaced it with any packaged, high fat, high sugar, total garbage product that I could and told myself I “deserve” it because of all of the things that I am denied! Here I am feeling like crud and I am being hit with the realization of what a personal trainer friend of mine says – “Garbage in, garbage out.”
My question is this – I think you said that pasta should be eliminated as a processed food. However, the pasta I eat has one ingredient: whole grain rice. Is that still considered a no-no do you think or would it be okay? I find pasta is one of the best ways for me to actually feel full.
Thank you for your blog and your honesty!
H Nikki. I don’t consider pasta processed food. It just sits very heavy in my gut so I gave it up.
Loved your movie with Will Smith 🙂
Dear Gluten Dude,
Could you please clarify what you would consider gluten-free food in relation to this post? I consider pasta to be processed food since it comes in a package and does go through a process in order to become the final product. Are you referring to sugary treats like cookies and such?
Being four months into this journey, I understand the benefits of eating whole food but deeply appreciate the foods that are easier to obtain since the destructive nature of this disease has taken such a toll on my ability to put energy into becoming healthy. The first few months consisted of eating only gluten-free foods in the hopes that, with the avoidance of gluten, greater health would give me the strength to incorporate a diet full of whole foods. Although I was still struggling, my lab results almost immediately showed great promise.
I have been a bit confused by this post and JE’s same assertion who, at the same time, is opening a bakery (???). Aren’t those bakery items gluten-free foods?
I love having the pasta about once a week and the feeling of comfortable fullness in my belly! The salads, although healthy, can get a little rough on my inflamed gut sometimes.
Thank you in advance for your clarification.
Hi Cali. Defining processed foods is kinda like how the supreme court defines porn. I’m not sure how to define it, but I know it when I see it.
In my eyes, processed foods are foods with tons of ingredients, many of them unnatural or unhealthy. Although I gave up pasta, I don’t consider that processed. I gave it up simply because it made me feel like crap. And I LOVE pasta.
Jennifers bakery items are all made from scratch, with all natural ingredients.
Everybody has to find their own journey. My post was never meant to be “this is the way everyone should do it”. It is simply what worked for me and if anybody out there is still struggling, they should give it a shot.
Ha ha ha ha! Sounds like the greater number of ingredients and/or preservatives don’t sit well with you. I am discovering this as well. Thanks for clearing that up.
I thought I would just share come information.
I started using the “Find Me Gluten Free” app on my phone. It is great. Friday night I was visiting my Mother in Philly. We went shopping at the Neshaminy Mall and wanted to eat out. The app found me Chow 284 only 10 minutes away. OMG! This is how you do Gluten Free. THe menu was clearly labeled, the staff was knowledgable and accomodating. I actually had Chicken Wings and English Fish & Chips(fries) – all Gluten Free! We LOVED IT. I only wish more restaurants would label their menus like this and offer these selections.
Check out the Menu:
and check out the App!
Hey Linda 🙂
Glad you found a great place to eat out!
I agree. The Find Me Gluten Free site is fantastic.
Hope you’re feeling well!
I am feeling a lot better than I was. But, I am also learning every day is different. I am a lot more patient with myself and rest more than I used to:-) But, all in all much better. I won’t bore you with the list of ailments I continue to manage daily because I know you probably have most of them yourself:-) lol… You know how it is…
It’s so exciting to eat somewhere and have no stress. It makes the meal so much more enjoyable. I know people who no longer go out to eat because they fear being “glutened”. Sorry, I won’t give that up. CD has taken enough away from me. Getting over my anxiety about eating out is more important than remaining in isolation and depriving myself of social interaction. So far I’ve been safe and had no really bad reactions.
When do you leave for vacation?
I am going on a Yoga retreat for my birthday from March 19th to 22nd at Kripalu Center in the Berkshire in Mass. I am already excited.
Hope you are having a “feel good” day…
Wow, Linda! I am excited for you about the yoga retreat. Have a wonderfully peaceful time. I love yoga.
I went to Kripalu for the first time last year for my birthday and loved it so much I decided to go back every year. 4 days 3 nights. Just enough time. I can’t wait.
check out http://www.kripalu.org.
Linda, we left today and after driving for 8 hours, we landed at our hotel in Virginia and saw a Bonefish Grill across the street. Oh baby!! This it the Holy Grail for celiacs–because they GET IT !!–and I just had a succulent Chilean Sea Bass with mango salsa, herbed rice, grilled asparagus and (gasp!) we split a creme brulee. Happy Camper right here. And the manager told me they are bringing one to upstate NY–Albany. I almost cried–for joy! 🙂
Who says celiacs cannot eat out and enjoy? All we have to do is choose wisely.
Kripalu is the place to go, I am told. The Berkskires are not that far from me and I love yoga (it has helped me get my strength and core muscles back) and someday, I’m going to go there.
Tomorrow, we drive to Georgia and by Saturday night, we’ll be in Key Largo where Chef Michael has already told me via email that he can make me an awesome, safe meal. Life is good!
ENJOY your birthday gift to yourself !! and namaste.
Have a wonderful trip!
I am lucky. There is a Bonefish Grill in my area. They are GREAT! All you need next is a PF Changs and you’ll be set.
I love Kripalu and highly recommend it. Yoga has really helped me heal. I go for my birthday every year in March. If you are not in Florida next year, meet me there:-)
Enjoy your vacation and feel good.
I havent been diagnosed with celiac – the tests always come back negative – but I have a family history of it and after a while of feeling horrible I tried a gluten-free diet. It worked to a certain extent then it all just got worse again. I cant try any of the diets people have listed above because I’m a vegetarian with eating disorders (Almost like a phobia of certain foods) which prevent me from eating fruit and vegetables – I’ve never tried a single piece of fruit or veg before, its that bad. Its all in the head, I know, I wish I wasnt like this but I just want to feel normal again, I’m fed up feeling ill, being afraid to go to school because of this. I have final exams in a month and I cant concentrate, I’m always tired and I just get too emotional. My stomach makes loud noises when I seem to be having a bad week and its so embarrassing.
I’m probably gluten intolerant, not celiac but I’m finding I cant drink milk without feeling worse and seeded gluten free bread has similar reactions. I’m fed up, I really am.
I dont know what to do, the articles I read – including this – are helpful but not for someone like me, all the suggested diets I cant even try because of my eating disorders.
Charlie, why not try powders? Look into Gary Null’s Green Stuff, Dr. Mercola’s supplements, protein powders. You need greens and protein. The brain needs protein. The gut needs greens.
I wasn’t diagnosed before going off gluten, and it made things difficult for testing. However, when i started the gf diet, i felt great for a month, then i spiraled downward. I blamed it on getting contaminated wherever i went. Not so. I was reacting to about 30plus allergies that the celiac damage caused. My body started to attack everything as an allergen. Short of the long… I gad to take everything out (even citric acid) i ate what i could handle… Which wasnt much. After months of healing i slowly inteoduced one thing at a time. Still have a hard time w dairy. I was able to bring some back but they told me to stop now until summer, bc im a mess right now.
Dont give up
Most of this advice is pretty good on the surface, but I can’t figure out why people who have “seen the light” can’t manage to give reasonable advice to help out the average person. It’s not like you can only eat either processed foods or only organic, free range, socialized and pampered foods. If you can find a happy medium you’re much less likely to slip up and eat something your body can’t handle.
How do you think the average person’s body is going to react when they eat on average 3 eggs, sausage for breakfast and fish at lunch every day? Enjoy all the cholesterol and mercury problems you’re going to have in a few years, not to mention the large amounts of saturated fats you’re consuming. And then there’s the fact that a lot of people can’t afford the $15 a day it would cost to follow this advice. Skip the meat at 2 meals and instead eat a protein and nutrient rich veggie like beans or lentils. Make sure you have reasonable amounts of fat in each meal and you won’t go hungry between meals.
Are you making your own sausage? Eating only fresh fish/meat/veggies? If not, you could be consuming just as much of those ‘crap’ ingredients as you were on the ‘gluten-free’ items. The best advice you could give anyone with dietary issues is not to which fad to join or avoid, but rather to cook all your own food.
You can enjoy all the pizza, cookies, etc you want when you make them yourself and you don’t get all the crap processed ingredients. If you’re cooking yourself 3 meals a day already according to this advice it’s not much harder to make the snacks and comfort foods that make sticking to a strict food plan easier.
Here here, totally agree with the make it yourself!
John…I assure you I’m an average person. And I totally agree about cooking all of your own food, but that’s just not rational for many people. The way I eat is not a fad…it’s just a healthier alternative to how I was eating.
I think we’re on the same page…just voicing it differently.
Oh…not sure why I’m due for a poisoning in a few years.
Something I discovered this weekend: The ingredient “xanthan gum” is irritating to a lot of people. It’s in Pamela’s baking mix, GF soups and lots of other things. I tried baking 2 batches of almond flour muffins this weekend the the xanthan gum causes bloating and gas almost immediately. My next experiment will be to try guar gum. It’s useful to have the gum in baked goods – it makes them less crumbly.
I think this article is brilliant. i wondered why after eating all the carbohydrates possible when i was dating last year i was feeling worse and sicker in my stomach when i went on a total gluten free diet. I had problems when i ate the normal food but i felt sicker and actually really sicker on gluten free products. Weird. But even feeling sicker) my iron count doubled into the normal range from low in just a very short time so the diet did something. Then i tried eating a piece of cake and then two more pieces the next day and i paid for it that next day. Then i tried a communion host at church i was sooooo ill. I just want to go back to my real food i can’t eat anything now. I only went gluten free for 4 weeks. And i now i am really bummed out. I just got the word about my positive endomysial antibodies results and i am an unofficial possible celiac waiting for a biopsy to be done. This article makes sense though, i buy all the goodies because i like breads and muffins and cereals otherwise why would I. They got us, we want what is the “normal food” and we get the “fake normal” “fake food” lol if you get that. 🙂
Food is a powerful thing Lisa. The food companies know this. There’s a balance in there somewhere…I think.
This is an excellent article by The Paleo Mom about gluten cross reactivity.
Jan you are right on with the link. I’ve been subscribed to paleo mom but never saw this article and it definitely applies to me. I’ve been doing so much research that my head spins. I have to be super careful and knew about several foods that I was cross-reacting to, eliminated them, am never tempted to cheat because I get so sick and pay for it dearly. Cross-contamination of certain foods I considered “safe” was a problem too. Started looking even more at labeling, even in bulk item like almonds….”produced in a factory that also processes…” fill in the blank. Thanks.
I try to becareful what I eat, but its like it does not seem to matter sometimes. For example.. the last week i have been eating eggs and a couple pieces of bacon for meals. I am so afraid of food now, but I ate some hersheys chocolate last night and today it feels like I have been hit by a truck. Things I think are safe just make me sick too. I took a day a month ago and drank milk with no problems so I don’t have problems with that. If I eat gluten in about 3 hours the sides of my mouth are cracked and bleeding but by night and the next morning my chest hurts like i had been breathing harsh chemicals, and my back, joints, muscles, and stomach hurt. I do not have lower problems..its all stomach on up. I have a small hiatal hernia so food always feels like its in my chest. So I hurt no matter what.. just not quite as much. I am so tired I just don’t even know where to start again and again. I also have chronic back pain and had surgery… so again, I always hurt. I am live with my husband andchildren who are not gluten free.. they refuse.
I just answered you on another one of the Dude’s blog posts, but
if you are getting glutened constantly, it is because the people who live with you are not being careful.
Learn about cross contamination and how to avoid it, or this will keep happening to you.
and yes, Hershey bars are GF.
Hershey’s are not gluten free! The sickest I have been from gluten was from Hershey candies that were supposedly gluten free. After calling the company they explained to me that after closing down the majority of their American plants they began producing most of their candy in Mexico. Because of this they will not and cannot give you detailed information about their ingredients if you call. They have an actual menu item in their phone system for those who have been glutened. They apologized to me and told me that their production lines are shared and some of the candies are packaged together. I got sick from the plain Hershey bars. Their answer? To send me am apology letter with a gift certificate for- you guessed it- free Hershey’s chocolate. Needless to say, I threw those away. It took me 3 months to recover from that glutening. We do not buy ANY product in our household that’s even owned by the Hershey company and never will.
I do not know when that was, but the most recent statement from Hershey’s is as follows:
“Hershey is committed to providing products that meet your dietary needs.
For your convenience, the current products listed below have been fully evaluated and qualify as gluten-free using standards proposed by the US Food and Drug Administration (FDA). Please note, this list is not all inclusive as we have other products that do not have gluten containing ingredients.
The best way to determine if our products contain a gluten ingredient is to read our product label. This label includes an accurate, current listing of the ingredients in our products. Because, on occasion, the list of ingredients can change, we strongly encourage you to check the ingredient label on the package each time before you make a purchase.
Last updated March 15, 2013
The list includes plain Hershey Bars. 1.55 oz.bar size.
My mom, also GF eats the kisses and has never had an issue.
Sorry you got sick, but I have eaten them and never noticed a thing.
In fact, the local GF bakery uses Hershey’s kisses in their cookies.
How could they possibly stay in business if they had gluten in them?
This was last February. Maybe things have changed since then. At the time, they did tell me that the kisses were made here and safe. I dosnt take te chance to try them. I refuse to support a company that tells me directly that they cant tell me exactly what’s in a product due to dofferences in productuon. I NEED to know exactly what’s in my food. The issue as she explained it was cross contamination- I understand many people don’t have to worry about that but I am very sensitive to it and can’t generally eat anything made on shared equipment with things that aren’t gluten free and just wanted to share my experience for someone that is having a tough time figuring out why they’re still sick as I was. When I stopped eating out and eating anything made in a shared facility- miraculously I never got glutened since.
I am not doubting you got ill from something. okay? .
I was trying to reassure Kathyw that it was probably not the candy bar
but her constant exposure to gluten. She had just said on another of the Dud’es blog posts that she is having trouble adjusting to the GF lifestyle since her diagnosis and feels awful almost all the time.
It’s just that I think it is unfair and untrue to say unequivocally that
Hershey’s are not GF when the company has issued a statement
about their GF products and as someone who will also have strong
symptoms from trace gluten, I can honestly say that the Hershey
products listed on that site under GF—have never caused me
Not going to get into a debate over “how sensitive” we both are
because that’s pointless. I just happened to see Kathyw’s post and wanted to help her out.
Have a good Sunday!
Whoa didn’t mean to ruffle any feathers, was just trying to help out with my experience and that of the other members of my local support group who all had the same experience and actually helped me figure out what it was. Maybe Hershey’s has changed their policy and statement but I personally would never eat ANY product that made me sick before just out of sheer terror. I can’t afford to be sick. I agree that living in a shared household is a huge source of issue- I had a roommate baking bread and didn’t realize u til I got glutened from that that flour remains in the air for up to three days. The more info everyone has the better.
Looks like that little Internet rumor is going around again! It appears that people who were laid of by Hersheys spread that all the candy is made in Mexico. I’m sorry I don’t have time to look for the articles that explain it. It appears that Hershey’s started making candy for Mexico and perhaps Central America, in Mexico. Because of the economy and advances in production, they have laid off workers over the years. It appears some of these disgruntled workers are spreading these and other rumors, about the company.
Been making chocolate in Mexico for 40 years and currently making candy in these US locations.
I’m sorry if you have a beef with the Hershsey company. I think it’s a shame when people try to scare people like Celiacs ( who have enough scary food problems).
I have been gluten-free for over 2 years now. I have Celiac Disease so I am very careful about what I eat. Recently, I consumed gluten by accident and my body did not show any reaction. My disease is confirmed by two blood tests and also by a two-way scope of my small intestines, bowels, and stomach. The top of the villi on my small intestines were flattened by the disease. Why do some Celiacs have noticeable reactions yet some have none?
I forgot to mention that I work in a flour mill. We make ancient grain and heritage wheat flour. I wear a mask however it is not 100% effective. After working in the mill for a few months, I asked my doctor to test me. I was worried that the fine particulate in the air could affect me. The test indicated no reaction at all. I am not sure if gluten that enters your lungs ends up in your small intestines? Perhaps it can negatively impact your body in other ways?
A bit random on this thread but….if your tests are negative and you feel good, you must be keeping the gluten out!
Inhaled gluten, flour in the lungs, is not going to start a Celiac reaction. But it’s not good for your lungs! However, whenever we breathe something in, it is in our throats and could be swallowed.
You speak the truth! Wheat flour replacement food is garbage.
Thank you for this article. I am completely onboard with it. After being gluten free for a year and a half I can confirm that I am at my best when I stick to a diet of whole foods. I recently went heavy on processed foods and restaurant meals during vacation and found myself miserable. I had convinced myself that it was difficult to eat with 100% accuracy during vacation. But, then I realized I was being ridiculous. What is easier than whole foods? Why wasn’t I eating Whole fruits and vegetables? Sure it might mean going vegetarian for a week, but that was better than being miserable. Since returning from vacation I’ve gone hardcore to eliminate all grains (corn, rice, etc) and processed foods. I’ve rarely felt this well and it’s easier than ever to tell when something triggers a reaction. My neighbor stopped over with gluten free muffins last week and I had an obvious reaction. I’m starting to feel as strongly about gluten free substitutes as I feel about gluten itself. The short enjoyment of eating it is not worth the repercussions.
My name is Gluten Dude and I support this comment 😉
Prior to being diagnosed with celiac (3 years ago), i spent a majority of my twenties trying to figure out what was wrong with me and why i felt so sick (muscle aches, swelling, gi problems, extreme fatigue, brain fog etc). Drs. thought i was sensitive to salt/preservatives…. in short, i became the poster child for “wellness”– drank nearly a gallon of water everyday, adopted the “Eat to Live” lifestyle (no salt, no oil, lots of fresh fruits and vegetables, limited grains) and did high intensity cardio workouts 5x/week. I took the weekends “off” to go out to restaurants/bars— felt horrible on sunday-tuesday and realized that the only thing that made me feel better (and drop the weekend water weight) was following a healthy lifestyle during the week. This went on for several years and contributed to a great deal of anxiety/depression in my mid twenties. I was terrified to “cheat” during the week, for fear of feeling awful at work the next day. i wondered why one “cheat” day of “bad” eating would send me into crazy pain and water weight gain, but my friends could “cheat” whenever they wanted and feel/look fine.
The celiac diagnosis was a blessing in disguise and going gluten free, of course, did wonders for my health. Over time, however, I’ve developed sort of a resentment. I don’t crave gluten at all… and i’ve never cheated. But now that i know that all that healthy living made no difference in my condition (i would’ve been sick regardless of what i did), ive developed an attitude as if i have to “make up” for all the lost years i spent restricting myself from bad food, eating super healthy and still feeling sick. i currently consume the same amount of calories as i used to (possibly more sometimes), but now an average day consist of potato chips, soda, peanut m and ms, red bull, hershey kisses, popcorn and cheese.. . the healthiest thing i eat is homemade trail mix every morning: 1 cup mix of chocolate chips, raisins, roasted pistachios. i rarely eat fresh fruit/vegetables. As much as i try to go back to eating healthy, i have no motivation. i know this is terrible for my health and stupid/irrational/asking for horrible consequences, but i feel so much better than i did back when i ate healthy. up until this point, i am the same weight i used to be (slightly underweight) with no other health problems (actually low blood pressure, low bmi). Without being able to feel the immediate benefits of eating healthy (and horrible effects of eating “bad”) , there is nothing pushing me to be healthy. i can’t seem to find any information on how bad this lifestyle is (low calorie diet full of mostly junk). Just wondering if you (or anyone else) has experienced this and if there is any information out there to scare me back into being the healthy person i once was.
I completely agree with you! I just figured out that caramel coloring was upsetting my stomach and most likely causing a host of other issues I’ve been experiencing. It’s frustrating and I notice simple meals are the best for me. But what about when we go out to eat? My mother just found out her stomach gets upset due to a preserve tube restaurants use when washing their lettuce and other produce! My boyfriend who can eat all the gluten he wants likes to take me to eat when he visits, so I’m wondering if you have any suggestions for us when we go out? Thanks!
Wow! This was a popular post (judging by the comments section, at least)! You are so right! I did my first Whole30 about 2 years ago…about a year after finding out I had a gluten sensitivity. I like the premise of the plan because if I could find out gluten had such an adverse affect on my health, what might other foods be doing?? I hated giving up the wine and cheese, though. Those two came right back and I was fine…not so much with the legumes. Some foods really helped me get through the cravings, tho…like roasted sweet potatoes with cinnamon for the starch, 2 ounces of apple juice with about 4 ounces of seltzer water for the wine craving, and SPAGHETTI SQUASH for the pasta. Nuts for the crunch factor. Eggs kinda helped for the cheese. I learned about coconut aminos. I had already lost 20 pounds the prior year by not eating gluten, but I’d hit a wall, so to speak. I lost 11 pounds in a month on my Whole30, and another 4 pounds the next couple weeks, because I maintained some of the habits. Almost 40 pounds gone in a year and 2 months (I’m 5’8′ female, formerly 179 pounds, now 142). I have recommended the program to family members who also reported it a big success. Good for you, GD! I sent you a message a while back about the best gluten free pasta, at Whole Foods, so I still do GF substitutes on occassion (rare ones), but had I known this, I think I would have rethought that message!
Great article! I am going to print this out to show my mom. She’s been diagnosed with diverticulitis and is in constant stomach and lower back pain and she’s very careful not to eat nuts & popcorn, but it doesn’t help.
I’ve been telling her for months that I think she’s allergic to glutens and she needs to quit eating them at least for a month! She’s 77 years old and stubborn as I am…lol. She says she can’t live without her tortillas and dessert breads.
I’ll keep trying though! Through my constant nagging I got her to quit smoking and she’s been smoking for 63 years, surely she can give up glutens!
I agree! I am gluten intolerant. When diagnosed I did not go gluten free, I went organic, Non GMO, unprocessed! I feel great! Healthy it is. I also read the ingredient lists on many gluten free products and they included lots or refined sugars, processed oils, high carb, etc… So I just eat healthy!
Over 5 years ago when I discovered I had Celiac Disease I did the same thing – went out and bought loads of ‘gluten-free’ baked garbage – and couldn’t understand why I was still suffering, until I realised it was carbs and processed foods in general that were the problem, not just gluten grains.
I started a very long thread on a popular Celiac forum for those who wished to try the Specific Carbohydrate Diet and was constantly monitored and harrassed by Mods. Unfortunately, the forum couldn’t be impartial because it was largely funded by the sale of gluten-free products, and I was seen as a threat and a maverick by suggesting those who were still sick should not be eating them. I eventually gave up trying.
But ALL the time people came on there asking why, when they had dumped gluten they were STILL sick. It broke my heart that I was not able to tell them why. Others would say things like ‘maybe you are getting it surreptitiously’, or ‘maybe you are also allergic to corn, or soy, or whatever’. I couldn’t get through to them that it was processed food in general that was the problem.
Gluten grains are so much of a problem now because not only do they contain far more foreign proteins and gluten, but they contain far less of the nutritional elements that are essential for their digestion in the case of things like extruded cereals maybe just 10% of the original. The wheatgerm which holds much of the nutrition is removed as it goes rancid very quickly – and that isn’t good for shelf life and profit! The flour no longer goes through a long fermentation to help break down the proteins either and generate more nutrition. Other processed carb food bases like corn and soy are also very devoid of their nutritional elements, the vitamins, minerals, trace elements and phytonutrients the body needs to work with during the digestive process.
That is why whole foods work so much better – because they are still whole and not fragmented in any way. The more nutritious they are the more the body has to work with. The Obesity epidemic, as Curtis H wood outlined 60 years ago is because we are ‘overfed but undernourished’. Food should be about quality, not quantity. Getting the most nutrition from the least quantity is far easier on the body than the other way around.
It seems to me the diet for someone who is Celiac is greatly varied and any irritants can be a result of some other associated issue that are in some Celiacs but not others. I have been gluten-free for 13 years, and I can’t remember the last time I had a stomach-ache (aside from me accidentally eating an Oreo last year, woops), but in the author’s case, he/she had major problems even on the gluten-free diet. I am also in terrific shape. In my opinion, I don’t think it really makes sense to suggest to new CD people whether to eat or not eat GF, because it could work perfectly in my case and many others, or could not work, like in the author’s case and many others. I think new CDs should try out different options and see what keeps their body feeling great. Maybe the title of the article should be “Try eating whole foods” not “Stop eating GF”. I do agree whole foods are healthy of course ,but telling people to eat whole foods for health’s sake can apply to anyone, not just people with CD.
I find it extremely helpful to have input from what I can “veteran celiacs” 🙂 so I am happy to read your comments, Alan. I am almost 3 years post-DX and I feel fine–now. I do incorporate some certified GF foods now (and earlier in this thread, I was not really using that many) I was fearful it was the GF foods, possible trace gluten etc,…but it wasn’t. It was just me, and my intolerance to soy, MSG and a few other foods and the fact that I WAS STILL HEALING..
I find that the longer I am GF, and my gut is healed, I can tolerate many more foods than I could when I was first DXed and deathly ill.
I think you are absolutely spot-on when you say:
“the diet for someone who is Celiac is greatly varied and any irritants can be a result of some other associated issue that are in some Celiacs but not others”
and I also firmly believe that people need to figure out what works best for them.
sorry for the typo. Using my hub’s tablet and that should say
“what I call”, not can.
No worries IrishHeart, I got what you meant 🙂 and I’m glad you agree on my stance. I’m not one to usually comment on things, but the title of the article just seemed too commanding in a sense. I do appreciate the information and experience the author has written about, but I don’t think it warrants something like “Stop eating Gluten-Free!” It’ll just stress out those newly diagnosed people even more, and have them thinking, “Oh great, now I’m limited more?” I think I read in another comment that someone had almost no reaction when they ate gluten, but another person I know had severe, life threatening reactions when they ate even the small bread crumb. Truth is, still not much is known about Celiac and it’s side problems and so there’s not just one solution. Just do what’s best for your body, and of course try to eat healthy regardless if you have Celiac or not!
“eat healthy regardless of celiac or not”—simply the best advice there is.
I dispense it freely myself LOL
I agree new Celiacs should try out different options to see which makes them feel better, but unfortunately when the politics of the forums they go to for that advice is run by sales of gluten-free food, you cannot necessarily assume that they will be given that advice.
It is not in their interests to suggest these ones try a whole food diet.
Many who are Celiac are told by their HPs that all they need to do is dump gluten and they will get better, when in reality for many that doesn’t happen. They are running round in circles trying to figure out if they are getting ‘glutened’ from some obscure source, when in fact it is just that they are including gluten-free foods in their diet that their damaged guts can’t cope with. How many HPs will advise a whole food diet in that case? Sadly, very few. Most don’t actually get it.
I remember going out and buying a heap of gluten-free bread and rolls, etc. right at the beginning. I ate a roll and violently threw it up. My body very firmly rejected it. It didn’