VioletBlue

And yes, I HIGHLY recommend Food Inc., it's an eye opener. Netflix has it as a view now documentary that you can watch on your computer.

Wow, it took some digging but I found exactly what I was expecting to find. Arcadia is owned by Anawah Inc which shares boardmembers and has "collaborated" with Monsanto on GMO programs since 2005. Basically no one does GMO work in the U.S. without Monsanto's involvement and blessing these days. So basically we're talking about Monsanto here; they're behind it through a veil of company names.

Do I trust anything Monsanto has a hand in? No, never, they're to blame for the destruction of an American way of life and for the modification without our knowledge of the very foods we eat.

But above and beyond that one of the biggest problems organic farmers using non GMO seeds have is cross pollination. Just because they have planted non GMO corn seeds doesn't mean their neighbors GMO plants can't and frequently do pollinate their organic corn plants resulting in GMO hybrids. So if Farmer A plants this new "safe" wheat and his neighbor Farmer B plants regular old Monsanto GMO high gluten wheat, Farmer A is going to wind up with a mixed bag of wheat only he's now able to label is as "safe".

Soy sauce should have four ingredients at most, soy bean, wheat, water, salt. gluten-free Soy has no wheat and is usually refered to as tamari soy sauce.

The food you listed the ingredients for doesn't sound much like soy sauce

I've been told that Soya Sauce had gluten. What if there is no mention of wheat in the ingredients? Here are the ingredients: Water, Salt, Caramel, Hydrolyzed Soy Protein, Corn Syrup, Glucose-Fructose, Sodium Benzoate. Does this mean it's gluten free??

Rachel

I was reading up on soy lecithin and found that it is literally the waste product left over from making oil out of soybeans. It supposedly will carry any contaminates or pesticides from the bean with it. I can't imagine how it wouldn't contain a fair amount of protein given the way it's processed.

It's a safe bet that about 99% of soy in the market, unless it specifically states it's organic is GMO soy. The same is true with corn and most everything else in the world these days. It's downright scary what's been done to our food supply in the last twenty years by Monsanto.

Oh, related to the soy lecithin! my GI doc was just telling me about that, warning me to stay away from it. He was saying that he's noticed most of his celiac patients and others with auto-immune issues are more sensitive to genetically modified foods, and tend to develop food allergies more readily when they consume them. And on top of that, he was saying that soy lecithin is almost always genetically modified.

I wonder if that's one of the reasons your little one reacts so much, ya know?

It was worth it for me. BUT, and this is a big one, DNA does not prove or disprove a diagnosis of Celiac Disease. Some people with the certified 100% Celiac genes may never develop Celiac Disease. Some people with genes that are classified as gluten intolerant ONLY genes do develop Celiac Disease. Something appears to trigger the genes and without that trigger celiac disease may never take place regardless of which genes you have. This DNA science thing is far from perfect and really cannot be used to diagnose with.

For me it was worth it. It told me I had a double copy of what is considered a gluten intolerant gene. I was diagnosed with a textbook case of Celiac Disease. Go figure. Researching my DNA results allowed me to understand a lot of what I've experienced in the last twenty years. They are learning more about how specific genes effect people every day and it can be one more piece of the puzzle of understanding your own body.

And can I just say the whole IBS or IBD diagnosis thing is pure junk. I hate that they're calling a symptom of a larger problem a disease. They do that because they know they have drugs and that more drugs are in the pipeline to "treat" IBS. They can sell you those drugs by calling IBS a disease. They KNOW there's nothing they can sell you if you're diagnosed with Celiac Disease. It's all about money and big pharma and not much about the health and welfare of individuals.

Hey thanks for the reply and suggestions. i went off gluten to see if I would feel better and back on because my doc seems to doubt that it is celiac disease. He says it may "just be ibs" which scares me because that seems to be the dark horseman of diagnosis. No cure and no way to ease symptoms (booooo). If it is IBS i'd rather be eating gluten and at least enjoying a slice of pizza once in a while. However, if not, I really want to remove it so I'll feel better. I do think I have felt better without the gluten but who knows if its just the waves of IBS as it comes and goes. I was hoping for a medical diagnosis.

Anyone else out there have thoughts on the DNA testing and if its worth it? Will it just confuse me more?

When I went gluten-free I pretty much cut out processed foods, so I've gotten very little soy in the last couple years. I've never cared for tofu or any other soy products so the only soy I was getting was soybean oil and soy lecithin in gluten-free things and of course in chocolate chips and bars.

Then I started having serious allergic reactions a few weeks ago to products with soy lecithin in it. The symptoms are less alarming with soybean oil, but soy lecithin is definitely out along with all other soy now.

The so called experts claim that soybean oil and soy lecithin can't cause allergic reactions because they don't contain enough of the soy proteins that set off soy allergies. Yeah, well, not in my experience.

I was wondering about that stuff too. I've been eating things with soy lecithin and they haven't bothered me at all, so hopefully it's just the actual soy. I think soymilk, and pretty much all milk is just hard to digest in general so I will be more careful and avoid all of it for now.

Funny thing, I'm generally lactose intolerant but I ate some things that later I realized had dairy components like casein an other types of additives and no reaction. That might be a good sign! I just need something milky and creamy in my tea and breakfast cereals. Rice milk is a sad substitute.

I have had the opposite problem. Farmed salmon is safe for me and wild salmon is not. Wild salmon has about 3 times the mercury content of farmed salmon, and for someone like me who is sensitive to mercury that's a big difference.

We use wild caught alaskan salmon with no problems. But I get ill when I eat farm raised salmon. antibiotics & growth hormones plus usually raise in murky , dirty water ( we call it swamp water)makes all of us ill...... I'm not sure how or where Star_Kist gets their from.... I would hope its okay.....

Alaskan salmon fresh or canned type is the best tasting, more expensive but what a difference in taste........

mamaw

First off I love your sense of humor!

And to answer your question; chocolate ice cream.

Fortunately KNOCK ON WOOD lactose has never been an issue for me. So I made a point early on of always keeping a safe brand of chocolate ice cream in the house. On a bad day it can make up for a lot. So more generally I guess the answer is to find something you absolutely love and and make sure it's always around, whether it's food or music or a walk in the woods.

I don't have any faith in allergy tests. The results can be open to interpretation. For me the best test is what happens when I eat something. If there's a negative reaction under different circumstances more than 3 times to any food I pay attention. My body doesn't react the exact same way to all foods, but I've gotten to know what a negative reaction feels like. I tend to think we're better off trusting and listening to our bodies than relying on tests.

I am like Ravenwood. Most of the neurological symptoms have gone away. My balance and vertigo issues are better after almost 4 years gluten-free but balance is still a problem in some circumstances.

I was thought to have it for a long time but it turned out to be the celiac brain impact. All my MS symptoms resolved within a few months. The only thing that remains is balance issues, which are actually gluten ataxia, but those are still continueing to improve.

LOL. Figures

This is the recipe I used without corn syrup. They were very good. I actually like this recipe better than the one I tried that used corn syrup. It may take longer for the sugar to get to the soft ball stage, that is the only drawback. Keep in mind that powdered sugar usually contains cornstarch, so confectioners sugar is a safer bet if corn is a problem.

Marshmallow

Ingredients

Yeah, now try and imagine a life without avacados and artichokes. Sorry, I couldn't resist. That's my reality. Both make me ill as do most nightshades, sunflower and many things in the daisy family as well as certain fish and seafoods high in mercury.

If gluten were my only issue life would be so simple and so lovely. I've been gluten-free since 06. Watching the Food Network is still an exercise in misery most days. I was a foodie but with allergies and intolerances it gets to the point where the options are limited.

I would literally kill to be able to walk into any restaurant and have someone else make a safe meal for me. My point is that while we may share the label Celiac, not all of us face the same challenges. What is easy for one person will be very hard for another in ways you couldn't imagine.

I agree with you. I'd rather cook myself now. I loved going out to eat. Could go out to eat everyday, for every meal. And I'm a real foodie at heart. Have loved food since I was a young child. At 5 yrs old, lobster, artichokes and avocados were my favorite foods, not burgers or fries.

When I went gluten free I did decide I would learn how to make my favorite meals gluten free. I think a lot of it has to do with attitude and where a person is in the grieving process of giving up gluten. I think going gluten free is harder than quiting smoking, drugs or alcohol. Gluten is everywhere so is harder to avoid. Smoking, drugs and alcohol are acceptable things to give up for your health. Bread, pasta and food that is "good for you and healthy" is not.

There isn't a patch or a pill we can take, we do not have hospital coverage for 6 weeks of gluten withdrawal therapy and it's not understood by our doctors. This is something that only the strong and determined will survive, mainly on their own.

At least we have our therapy group here.

I would think it would depend on what you're using it for. I know that most marshmallow recipes call for it, but you can make marshmallows just using sugar. Corn syrup in marshmallows just kind of kicks and speeds up the boiled sugar a bit and helps the texture a little, but they're still quite lovely without it. So I think the answer depends on what you're using it in and why it's in the recipe.

Does anyone know of a good corn syrup substitute? My hope is that there is something simple that you can buy at a store but I'm willing to make one also.

Okay, need to get something off my chest. This is petty I'll admit, but I just figured it out the other day - only took me three years - and it's been annoying the crap outta me ever since. I have a SIL who's a tireless volunteer for the American Cancer Society. Goes all over the country as a volunteer for them. No sacrifice too great etc etc etc.

After I was diagnosed and I went public with it she stopped sending a christmas present, no explination. I found it odd but I didn't particularly want to ask why. I continued sending some token gift or other. I realized why just last week when she posted a photo on her Facebook page of all the dozens and dozens of cookies she'd just made. She now sends out cookies to friends and relatives at christmas. While I admit it was thoughtful of her not to be sending them to me year after year, her approach was somewhat cold. By contrast one of my best friends goes out of her way every year to find something little and gluten-free to send me like a small box of See's Chocolates or something she found at Whole Foods or Henry's. I mean I'm thrilled with a $5 box of See's Candy because the nearest See's is a two hour drive for me. How freaking hard is it . . . . .

Anyway, that's my rant for the day.

Tired of hearing about spouses and parents that don't believe /support the Celiac diagnosis or treatment. People will shave their heads in support for friends or family having chemotherapy but giving up beer and pizza etc is a great inconvience for relatives of those with Celiacs.

It is possible to have the DNA test done outside of a health plan. There are a couple labs that do it and you can purchase the test kit on line. It would be interesting to see what your mother's DNA looks like and that's one way to do it. Since you inherited one of your two genes from her it might help to compare her results with yours. The DNA tests don't test FOR specific gene variations, but rather test specific parts of your DNA. So your test results will most likely not be just a negative or a positive, a yes you have it or no you don't; but rather the test results will spell out which genes types were found at that location.

Go back to the doctor and ask for a copy of your DNA results. You have a right to that information. Then go online to a search engine and type in your gene types and learn more about it or them. Ironically the internet will have more up-to-date info than your doctor about genetics and gene types. There's also a very real chance that the doctor is misinformed about Celiac genes and believes you need a double copy or something.

They are beginning to realize that there may be other genes that can cause Celiacs as well, genes previously considered gluten sensitive genes only. It's also possible that your DNA test will show that you posses gluten sensitive genes in which case a gluten-free diet could make a world of difference too. But with all those symptoms you really do need to press your doctor to do more for you.

Hi,

Has anyone tested negative for the celiac DNA test only to find out that they are celiac?

I have been unwell for some time, getting worse and worse. My mother was diagnosed a celiac 9 months ago after years of sickness. She didn't ever have the DNA screening test.

I've read some research that suggests that Gluten Ataxia presents brain lessions similar to those found in MS patients. Lessions are found in the cerebullum which is the area that controls coordination. I also found out through researching my DNA results that the gluten intolorant gene I have a double copy of is found in most people diagnosed with MS. Who knows what that means.

Ataxia basically presents as a balance issue. There is a simple test. Stand with your feet together and your arms at your side and close your eyes. People suffering from Ataxia will literally start to teeter tooter from side to side and run the risk of falling down. "Normal" people can do this without a problem.

I also have had the muscle twitching. If I'm taking all my vitamins regularly that problem seems to go away. The B complex and the magnesium seem to help the most to keep the twitching at bay. I'd say that muscle twitching is more about vitamin levels than any type of brain disorder.

I've been gluten-free since Dec 2006. I still have balance issues. But the bright side is they have not gotten worse and have possibly gotten some what better. It was the anemia that led me to an eventual Celiac Diagnosis. My levels of B, D, C, A and iron were way off. I still supplement with B, D and iron to keep those levels up. If I recall it took about six months for the twitching to stop once I started supplementing and went gluten-free.

Hello all. I'm 23 and I was diagnosed with Celiac disease 11 days ago. Both my blood work and biopsy tested positive. I haven't touched gluten since my diagnoses.

I do not have any gastrointestinal symptoms...

My primary doctor sent me to a spine and joint doctor for buzzing/tingling & twitching in my legs. She did an MRI which revealed a single white matter lesion on my brain. She suspected I had MS and referred me to a neurologist. My neurologist quickly dismissed MS and said the lesion was non-specific.

It was my neurologist who requested the blood work for celiac disease. My symptoms began with buzzing in my legs and feet which progressed to twitching and stiffness and than finally to muscle pain (mostly in calves). The twitching has since jumped around here and there, but primarily it settles in my calves.

My pain has greatly diminished and the buzzing has all but gone away, but the twitching still persists. I think the twitching has become less intense, but honestly I cannot say for sure. Also, stiffness is still there...

I am quite concerned about the twitching because my B12 (517) read within normal levels. And I understand a B12 deficiency is often the cause of twitching in Celiac patients. Seeing how the twitching is still hanging around I fear that perhaps the twitching isn't connected to my gluten allergy and may indicate something much worse. That's where the anxiety kicks in...

1. Do any of you experience muscle twitching?

2. If so, how long does it normally take for it to go away after exposure?

3. Do you have any vitamin deficiencies?

4. Is there anything I can do for treatment?

Thanks!

One more time. Go get tested. There are medical treatments.

There's a lag time between when you start eating and when you body realizes you've eaten. So you can continue to feel hungry until your body begins metabolizing the food you're eating which could take up to twenty minutes. Your brain which creates that hungry feeling doesn't get the full message until the nutrients start flooding into the bloodstream. Also consider that you may be dealing with low blood sugar issues which are also common. Learning to eat more balanced meals may help too.

And like someone else pointed out being hungry is a common side effect for some time after going gluten-free. You were literally starving when you were eating gluten. Now, your body is trying to make up for lost time. It's also a good idea to listen to whatever cravings you have now and indulge them. There is usually a good reason why you're craving a certian food; it may supply some nutrient your body knows it desperately needs. Sometimes the body knows better than the brain or the doctor.

It was suggested in another topic that a part of my constant hunger might not just be my body screaming for nutrients, but also an h. pylori infection.

Now, here's what I experience. Frequent hunger (i.e. lose energy, can't focus, blood sugar goes down, etc.), rumbles in my front, and left side. Sometimes I get the rumbles as soon as I *start* eating or drinking. No stomach pain though. The rumbles seem to recede if I eat a LOT.

It has been worse in the past though. I used to feel the rumble in the front of my body like every few minutes or so. Now it's not even every hour.

Could that be h. plyori, or is that just a normal hunger symptom of celiacs in recovery? If it is h. pylori, would could deal with it? Would yogurt's probiotics help? Anything else?

Or do my lack of issues such as severe pain, nausea, etc. mean that it's likely not h. pylori and can't be helped?

Yep, I've had the same reaction to D3. I haven't had the opportunity to see if it helps with a glutening and I'd just as soon never but it does wonders to improve my mood and stamina. D3 and iron are the two most helpful supplements I take. Funny I was downing huge amounts of B vitamin complex and it never had the positive effect that 5000 of D3 has had. I'm a believer.

Like you my low blood sugar got better after going gluten-free. But I do sometimes still have issues with it. I have found it helps if I'm careful about what I eat and when. I make sure I'm combining carbs and protein when I eat and not overloading on carbs. I had too much Spaghetti squash the other night and apparently did not have enough protein with the meal and was hit hard with low blood sugar not long after the neal. The squash was oh so good, hence the too much, but it is high on the glycemic index. It kinda crashed my system so to speak. For me it can take 20 minutes or more to feel better no matter what I do from that point.

Also as gluten-free people we tends to substitute in a lot of rice products. Things like rice milk and rice noodles and rice cakes all carry a huge glycemic load. Potatos are not as high on the index, but they are still up there. So the foods we're using in place of the gluten foods can be part of the problem.

Look up the glycemic index and find a reference listing of what types of food are high. Foods higher on the glycemic index convert faster to sugar than those low on the index. I believe the low after the sugar high is what gets us. For me it has been trial and error finding out what works for my body and some foods affect me differently.

I was wondering if anyone else suffers from feelings of low blood sugar? When I first went gluten free about 2 months ago my feelings of low blood sugar went away but they are starting to come back. Anyone have this? or have any advice on getting it more under control?

Yes I've read that Iodine PLAYS A PART in DH, but that is not the same thing as an allergic reation. A true allergic reaction involes histamines etc. An iodine allergy is rare simply because the human body manufactures it's own iodine and stores it. Someone being allergic to iodine would be like someone being allergic to calcium or iron or magnesium.

If you're going to regulate how much iodine you use you have to understand that it's present in many foods in small amounts, EVEN SEA SALT. Anything harvested from the sea will be rich in iodine, and sea salt is, well, SEA salt harvested directly from the sea.

Supplemented table salt does contain more iodine that sea salt, but sea salt is not 100% iodine free. Iodine can be in any food in trace amounts because it's in the soil in trace amounts. Avoiding iodine entirely is next to impossible. About all you can do is limit exposure by cutting out obvious sources such as table salt. Unless a product specifically says sea salt, it's a really good bet that most packaged foods with salt added use iodinized salt.

The daily recommended dose of iodine for an adult is 150 mcg/day. One teaspoon of iodized salt has 400 mcg.

Open Original Shared Link

Open Original Shared Link

If your fish oil says that people with thyroid problems should be cautious, I wouldn't use them right now. Nordic Naturals sells purified fish oil that has a very low amount of iodine.

Violetblue, there is research that shows that iodine does play a part in DH breakouts, so in general people reduce their intake at least until their DH is under control. I've been a year gluten-free and now I can eat shellfish and kelp without getting a breakout. However, one month into my gluten-free diet, I had mussels and had an awful DH reaction.

celiac.com article about iodine and DH

THis page states that iodine is actually required for the DH reaction:

Open Original Shared Link

Iodine is important, particularly to the thyroid. That is why most table salt is supplemented with iodine. The average diet minus salt would not supply enough iodine. Without sufficient iodine you run the risk of goiter or worse. The body truely does need it. All seafood is going to be iodine rich including kelp.

Iodine allergies are extremely rare and if it were that you'd react every time you ate ocean fish. Could it be something else causing your reactions?

I don't have information specific to Iodine and Celiac Disease, but can tell you I supplement with Fish Oil (had been lemon flavored Cod Liver Oil for about 7 months, but I recently switched to a Fish Oil capsule because I take enough supplements that it was getting hard to drink the spoonful of oil).

I thought that small amounts of Iodine were important to our diet, so I do hope others are able to provide more specific info.

Yes, I suppose at 47 you could consider me middle aged, thanks by the way for that. HOWEVER, had one single freaking blind pig headed clueless medical professional figured out twenty years ago what was wrong with me I wouldn't have been middle aged when I first started bedeviling you at your restaurant for something, anything to eat that doesn't have wheat rye or barley poured all over it.

Deep breath.

And I would hardly call it popular. A condition that makes it very difficult to eat in restaurants or at friend's houses and requires you to completely rearrange the way you look at food could hardly be considered a popular idea by anyone's standards. Eating gluten free is a medical necessity for me, unless of course you want me in your ladies room throwing up, but that does not make it popular with me. It obviously doesn't make it popular with you either. So I'm not exactly sure who it is you think eating gluten-free is popular with. Let me assure you it's a major major pain in the butt to eat like this and no one who comes in to your restaurant wanting to eat gluten free has made this choice lightly or for the fun of it. In short it ain't a popular choice.

And bravo to those of you who managed to avoid therapy when some nice doctor was convinced your nausea joint pain and brain fog were all in your head. I wasn't so lucky. Nice to be able to look back at how much money I spent on stress mediation techniques, not covered by insurance, when all I really needed was a change in diet. I want that money back damn it. I spent thousands. Then maybe I could afford to eat out more.

I disagree. The difference is you can teach a dog not to steal off the counter. Humans, well, not so much, LOL. BAD HUMAN!

It took some persistent work but I finally taught the puppy from hell that counter surfing was not acceptible. Now if I could just teach the kitten . . .

The WHOLE thing? Wow...

Yeah it's not like having a human eat your bread...you can yell at them and make them feel bad...make them learn from their actions, lol...but darn those spontaneous animals! Doesn't make you feel better to yell at them either.

Sorry 'bout your bread...that sucks.

If you're getting home at 9 at night I don't think a crock pot is going to work on those days, LOL. What ever you put in there in the morning is liable to be mush by 9pm. But, on those days when you do get home around four or five or so you could use one to do like a pork roast or a whole chicken and then you'll have left over meat for days after to throw in with noodles or over lettuce for a salad. Crock pots can be purchased cheap at thrift stores and the like and since their bowls are ceramic you wouldn't have to worry about CC. They're not at all complicated to use.

There are some gluten-free alternatives to what you've been eating. Thai Kitchen makes indivudal serving packets of rice noodles with flavoring packets. They look a lot like raman packages. The flavors are not the same as the raman packets, but it is a safe gluten-free version and you can always toss some kind of meat or vegetables into it as it cooks. Amy's makes a gluten-free mac and cheese box just like Krafts; it works the same way it just uses rice noodles and gluten-free free cheese packet. You may have to search a bit to find a store that carries them, particularly the Amy's. Amy's also makes a frozen gluten-free pizza, again you'll have to search as most mainstream grocery stores tend not to carry it.

If you can bake chicken you've got it made. I usually marinade chicken in a bag using olive oil and italian spices or soy sauce sesame oil ginger and garlic for an asian flavor. Or you can make your own shake and bake; I do that sometimes to. I mix up corn meal with some gluten-free flour, like maybe rice flour and some garlic salt and whatever other spices in a bag and shake the chicken in that. Again it's not going to taste exactly like shake and bake but it is doable.

Eggs are gluten-free. Scrambled eggs for dinner is quick and easy. Or buy a bag of Pamela's Baking Mix and make waffels or pancakes for dinner. When I make waffels I make more than I need and freeze the rest so I have them in the freezer. I put my PB&J on reheated waffels instead of bread.

Corn and Rice Chex cereal are gluten free and they make a great snack mix too if you follow their recipe on the box substituting gluten-free where you need to.

Part of my frustration is I was glutened last week and don't know how. I think it was cc. And my stomach feels raw.

Before I went gluten free I lived on a lot of gluten filled foods:

pasta w/ tomato sauce.

mac and cheese

top raman w/ chicken

chicken w/ shake n' bake

cereal

pb&j sandwiches

pizza

and other assorted things.

Like I said, I am a picky eater.

It's odd that you all picked up on testing as an issue with relation to health care reform. There are so many ways to cut expenses in the current health care "system" that have nothing to do with how many tests are run. It's kind of a non issue in reform. The real targets from what I've seen are excessive costs and the obscene profits most health care providers rake in while picking and choosing who they insure so they can further maximixe their obscene profits.

And I'd kill for ANY kind of health care plan at this point. I'm not picky, just give me something I can afford that will allow me to sign up inspite of my medical history. I'd be thrilled beyond words to have ANY option.