This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Interesting thought Bartfull,
I have had similar thoughts. It does seem like things just don't add up too much of the time. But then I meet some Celiacs that seem totally fine on a just gluten free diet. They aren't careful about anything else, but some of us are much more careful and still having trouble.
It's so confusing! Research is constantly changing, I wonder how much of what we think we know will be totally different in a few years?
Our bodies are made up of trillions of bacteria, and adding to all the beneficial ones with good probiotics can only help your body do better.
The one thing you do have to be careful of is increasing gradually, because if you suddenly start taking a lot more probiotic foods/ or supplements you can have "die off"/detox of bad bacteria and toxins that happens more quickly than your body can handle. This can sometimes cause flu or allergy type symptoms as well as some others, so it's best to keep increasing intake, but do it slowly to get your body use to it.
I think that cultured/probiotic foods are a really great option for people with celiac/gluten sensitive, because along with getting nice and high doses of good bacteria, they also increase vitamins in the food and when studied cultured foods had a particular increase in all the B vitamins.
Kombucha has good levels of B12 I believe, and Milk Kefir has been studied specifically to have good increases in B vitamins - especially when made at home.
I hope you can find something that helps you very soon - it's quite hard to deal with anxiety. And losing a job makes it so much harder, I hope you find one quickly.
I've been gluten free for four years, but it took me a while to find all the weird little things that were likely cc'ed and then even longer till I figured out how very little I could actually eat because of all the damage and my inability to digest food in general very well. I also had my gallbladder removed 6 months after going gluten free, so that didn't help anything.
I'm also really sensitive to chemicals and I didn't realized just how bad that was until maybe 2 years ago. I have to be really careful to eat only organic foods and not come in contact with them through the air or topically. All these different things make it really hard to figure out what all is going on and it's definitely a process.
Here's a couple of links for sourdough starter recipes that I have tried. They are both good ways to go. I tried them both at different times, and now I have figured out my own variation. I have also found that once you get use to the nature of working with gluten-free sourdough it's pretty easy to make a bread/pancake or other bread things with it. You do get variation a lot, but after you get past it all being something so new you can usually make anything turn out at least pretty good, if not great!
I made the loaf of gluten free bread from the first link a couple of years ago, and although I couldn't use all the same ingredients, it still turned out pretty good. I didn't use a dutch oven like she did either, because I didn't have one. I think I might have baked at a higher temp though.
The recipe for pancakes (I would call them more of a flat bread) in the pdf from the second link is probably the easiest way to start, and don't be afraid to just use the ingredients that you can use instead of following the recipe to a T. It does work best with some sort of binder and I have used flax, chia, eggs, and psyllium husks for the binder. I think psyllium husks work best though, and you need less of them than you do the flax or chia seeds. You can use milk kefir instead of water kefir to start the sourdough, and I've tried it and liked how it worked - it helps with getting the yeasts to grow better than the water kefir does in my experience.
Also, I think in the pdf she says to just start a new starter every time you want to make bread (I think she says that anyway ), but l don't like doing it that way. I like to feed my starter every day and then use what I want when I want to use it. If I don't want to make it so often I grow my sourdough in the fridge and I feed it as often as I need to to keep it from getting liquid separation on the top. I find that keeping the same starter going makes it easier to have a really good strong starter that makes things rise and cook better.
Well, maybe that will give you a place to start, but I'm happy to help with any other questions if I can.
Just wanted to point out that "Buchwheat" is not actually "Wheat" and it IS a gluten free grain. I wasn't sure if you knew that or not - the name makes it pretty confusing. I'm not sure how safe the "365 everyday value" brand is as far as CC though.
Thanks for the responses about the validity of enterolab.
I'm interested to read about it more, because I have had a couple of doctors say that they thought the tests were legitimate, but several others that hadn't heard of it and thought it was just a money making scheme.
It would be so nice if it was a legitimate test, though. It would definitely help a lot of people figure stuff out with out so much suffering in the process.
I'm with you IrishHeart - I hope they figure out some more accurate and less invasive tests soon.
Some people have used Enterolab to verify that they had a gluten sensitivity, and this is done with a stool sample. If I remember right, they can pick up antibodies in the stool for six months - maybe more - after going gluten free.
This however is not an official diagnoses, and maybe others that know more about it can chime in, but at least it verifies for you whether or not gluten was indeed the problem (or a part of it).
I believe that some people on this board have been tested by enterolab and brought the results to their doctor and the doctor then gave them a diagnoses, though maybe just for gluten intolerance as opposed to Celiac Disease. I can't remember for certain though.
I haven't read much about enterolab for a while, so maybe some others on this site can give better info about it as far as it's legitimacy.
Might be worth checking into though. I know that I wouldn't want to go back on gluten just for testing either - hard to fell like it's worth it, but everybody's situation is different.
Hope you can quickly figure out what's best for you.
Are you pretty sure that your rice source is not contaminated with gluten? I'ld check into that first - though you probably already have, just in case.
A lot of rices are "enriched" with vitamins and minerals. I wonder if that could be a problem too?
If non of that could be it, it's possible that your body doesn't want rice right now. Bloating is always a sure sign for me that my body isn't digesting very well.
I read this research paper a year or two ago that talked about the best way to make (whole - not ground) rice the most digestible and it said to soak the rice in water for 24 hours then reserve some of the water for the next time you want to prepare rice and add that reserved water to the new batch with some extra water to soak for 24 hours before straining and cooking - always reserve some of the water. After doing this four times the reserved water has built up a lot of really good bacteria and yeasts and then is able to break down the anti nutrients and pre-digests the rice to it's maximum strength. After that you just all ways save back some of that soaking water that you strained off of the rice before you cooked it (keeping it in the fridge) to add to the next batch.
The tests that they did show this to be the most effective way to ferment the uncooked rice, for the best possible digestibility and nutrition.
I did the SCD/Gaps diet for a while too, and the yogurt that you make for it was the first experience I had with culturing foods. At the time I still didn't tolerate the yogurt very well. That could have been for a couple of reasons I suppose. One being that maybe my body just couldn't handle it at the time, or two being that (and I think this is more likely) although you can get rid of the lactose and get some really good probiotics, they are not as strong and there are not nearly as many strains as in milk kefir. I still make yogurt for my kids, but I don't feel like I can handle it as well as the milk kefir.
When I make milk kefir, I use the the "grains" which are actually a culture that looks something like little califlower florets, and are not a "grain" really at all, but they are just known by that term.
I culture the milk with the grains on the counter in a warm, but not hot spot in my house for 24 hours then strain the grains from the milk and add them to the next batch of fresh milk.
I then take the milk, which has now become kefir, that I drained from the grains and I'll add something to it like fruit of some kind, but you could flavor with anything you want, and I often add a little bit of sweetener at this time also (this way the bacteria and yeasts break down the sugars in the sweetener and fruit, I wasn't able to tolerate fruit at all until I started putting it in my kefir for the second ferment).
Then I let it culture at room temp for another 6 to 24 hours (I don't think I've actually gone the whole 24 hours yet, it's usually 8 to 12 hours).
After that second ferment, I label it and put it in the fridge for the next day or I'll go ahead blend it up with some ice for a smoothie.
It really does help me a lot with GERD, and I usually drink my cup at night, a little while before bed. It seems to give the best relief for me this way.
Here's a site that I learned about the second fermenting from, she really knows a lot about milk kefir: http://www.culturedfoodlife.com/what-is-kefir/
I think milk kefir is worth a try for anyone that is otherwise sensitive to dairy. It digests much easier and the type of bacteria and yeasts that are in it actually reseed your gut and don't just pass through like most of the bacteria in yogurt (although that is still very helpful ).
I make my own sourdough out of white rice that we grind ourselves, from starter that I made myself. I have made sourdough starter with a couple of different methods that I can tell you about if you are interested. I make sourdough out of other types of gluten free grains for my family that can have other grains that I can't tolerate.
I can eat homemade bone broth, butter from grass fed cows, rice sourdough, fermented veggies, the rice sourdough that I make, well cooked organic beets, organic zucchini that's also well cooked, homemade kombucha, milk kefir with fruit in it - so far I'm okay with berries, apples, lemons, grapefruit, and oranges - as long as they are fermented in the kefir, if I use a sweetener in the MF (milk kefir) I use organic sucanat or organic raw honey from a local honey farmer, but I do best with the sucanat for some reason. I have just barely been able to eat some sauted organic lettice and sometimes I can have a very small amount of green onions. Sometimes I can eat a small amount of hard grass fed organic cheese. When I lived in Utah, there was a local 100% grass fed dairy that sold raw milk and I could have that without any trouble, but I live in Idaho now and can't find a good source for raw milk. That's about it for now. Sometimes I try a bite of something that I know is gluten safe, and I can usually tell that I shouldn't eat anymore of it if it's something I can't digest well. I feel the best when I eat a cultured food with any of the foods that are not cultured. Slowly, but surely I'm getting to add more things to my diet.
As you can see from my list, the milk kefir helped me to be able to have several other foods that I hadn't been able to eat for a long time. So, I'm an advocate! :0)
Let me know of any other questions you might have.
We really like the coconut flour cupcake recipes from elanaspantry.
I've like all her coconut flour recipes that I've tried so far.
Another good site for coconut flour recipes is Tropical Traditions. I used to make a Molasses cookie recipe that was on their site. It had coconut and almond flour I think.
When I just need to make something really quick for the kids I'll often mix up this pancake recipe (I don't know where I got it):
2 Tbsp. Coconut Flour
2 Tbsp. Milk or other liquid
2 Tbsp. melted butter or other oil (can also use puree of some type)
1/4 tsp baking powder (or soda if preferred - omit soda if omitting sugar/honey) - this is optional, but will make them rise a little more
Pinch of salt
1 tsp. sugar or honey (optional)
Wisk dry ingredients together then stir in butter/oil. Slowly stir in liquid, then wisk in eggs one at a time. Cook on a greased med - med/high griddle. This doesn't make very many and they turn out best if you make them pretty small.
I do that (ferment brown rice with vinegar) too, for my family. I sometimes have a few bites, but although it makes it better than if I hadn't fermented it, I still don't feel like I can digest it very well. I do better with sourdough made with rice flour. I think because it can ferment more thoroughly when the rice is ground to flour.
Sometimes I feel like ferments like sauerkraut do burn my stomach a little. If my stomach is feeling raw I will just eat really small amounts at a time, and it "seems" like it actually helps my stomach to heal quicker. Milk kefir has actually helped my stomach the most and if I have a glass every day I don't get hardly any signs of heart burn, which is so relieving because I wasn't able to sleep very well, because the heart burn would wake me up at night.
I think everybody's body's can tolerate different things while they are healing. My sister uses Kombucha to help her digest her food, but I couldn't handle it for a while - it seemed too acidic for me, but it helped her with handling other acidic things better. Weird, I know.
I think that whatever your specific body is working on at any given time determines what works best for it. Does that make sense? I feel like I'm wording things in a confusing way.
I still hope that people will join this discussion, because I think that it is something that could really help all the Celiacs/gluten intolerant people out there.
Maybe I'll just share a bit of my experience with cultured food and what's happened in my health from eating them.
I'll start by saying, I'm not trying to sell a "cure all" or anything. I just really think that good gut flora has something - and maybe a lot - to do with our ability to recover from illness, and that includes all of us with food issues because our gut is so damaged.
I'm by no means healed and healthy at this point. But, I was continuing to get worse and worse until I started learning about cultured foods.
To make a long story short, I'll just say that after going gluten free I still didn't feel well (like happens to many), and I went through all the different things that you do with this sort of illness.
First you stop eating gluten containing foods, then you realize you aren't being as careful as you actually need to be to not get cross contamination from foods with gluten in them.
Then you realize that gluten isn't only in food, but also in all sorts of other things that you would never think of until you have to think of it because you aren't getting any better.
And it goes on like for a little while, and for quite some time you feel totally freaked out that the whole wide world is covered in gluten and why would God have made something that would be impossible to stay away from!?!? and am I going to have to be a hermit? and on it goes.
After that, I kept finding more and more foods that I couldn't tolerate until I had only a few foods that I could eat, but even those I still didn't feel so great after eating (and I use that term "great" loosely, because I have yet to actually feel "great" - I'm not sure I ever have anyway ). I think this happens to a lot of people because of the leaky gut that we have from all the damage (and I did find out I had leaky gut).
I tried taking probiotics in capsule form like other people, and I tried all different kinds, but even if they were helping me, I couldn't tell it - no seeming improvement.
Throughout the process I found out about probiotic foods (cultured/fermented foods) and started reading about them a lot. I decided to give them a try and it's the first thing that I really think I have noticed a real improvement in how I feel after I eat them and it's helped me to be able to eat foods that I wouldn't otherwise be able to eat.
One added benefit to culturing any food, besides all those friendly bacteria, is that a by product of the bacteria is that they create more vitamins in the food while they digest the sugars and proteins, and such. One thing that I have read about - there are actually studies that where done on cultured foods about this - was the increase in B vitamins. That's definitely a bonus for most gluten intolerant people. You can see this even if you look on a bottle of Kombucha from the health food store. It has some pretty significant levels of B vitamins, and the other great thing is that the cultured food helps you to digest itself as well as other foods you eat with it because of the enzymes and friendly bacteria that are present.
Another benefit to eating cultured foods? The ones you buy are kind of expensive - though, I think worth it if you can't/aren't up to making them - but when you make them yourself they are much much much cheaper than buying probiotics in supplement form, and they replace some of your food, and increase your nutrition. Plus, you get much higher amounts of good bacteria, even in small doses, than you would get in a supplement. And, you get many more strains of bacteria and healthy yeasts, depending on what cultured food you eat.
Some that I have tried are, Milk Kefir (just recently:)), Water Kefir, Kombucha, Homemade yogurt, wild salt vegetable ferments (sauerkraut, kimchi, etc...), and I've been making gluten free sourdough breads which wouldn't add a whole lot of probiotics once they are cooked (though maybe a little), but it does make the grains a ton more digestible, because it's in a sense already pre-digested, plus it has those extra vitamins and it neutralizes most, if not all, the anti-nutrients in the grains.
Well, I hope this might help someone - and I hope it catches on a little . If any of that was confusing, I'll try to clarify, or if there are any questions, I'll do my best to answer.
I was just wondering if any of you have had much experience with and/or success with cultured foods.
Have you had any improvements from eating/drinking them?
Does culturing them help you to be able to eat foods that you otherwise wouldn't be able to eat?
I have had some great results so far from various types of cultured food. It's one of the only ways I have been able to eat many vegetables until just recently. I can eat sourdough bread made out of rice flour, and milk that has been made into kefir.
If you want a grain free bread try going to elanaspantry dot com. I believe she has a couple of grain free bread recipes I tried the more simple one of the two she had at the time and it was pretty good. A nice flavor, but it was more of a quick bread texture - though not quite as crumbly, and was made with almond flour.
I've tried some of the coconut bread recipes out there on the net and a lot of them are good, but you really can't think of them like yeast breads.
Don't know if it's something you would be interested in, but the best bread by far that I have had since going gluten free is Sourdough bread made with natural/wild yeast. There is an art to learning it, but it is so much more digestible and it tastes the closest to what you think of bread tasting like before going gluten free. Here's the link to the first recipe I tried: http://www.artofglutenfreebaking.com/2010/10/sourdough-bread-boule-gluten-free/
I made my starter with some water kefir in place of a couple of tablespoons of water. I also have made a good starter for sourdough with milk kefir which you can buy at most healthfood stores.
I really think that with the weight issue it's just depends on the person and what all is going on inside the body. I have gained a lot of weight and it has all been mostly over the last two years when I have barely been able to eat. Just to try to understand what my body was doing, I weighed myself several times when I was so sick that all I could tolerate was broth to eat, and on two separate occasions of only eating (well, I guess it's actually drinking ) broth I gained 7 to 10 pounds. Now if that doesn't prove that it's not all about caloric intake then I don't know what does!
My doctor told me that when your body is so damaged and trying to heal itself in an effort to protect your cells it will surround each cell with fluid, and that can make you "gain" weight really fast, but it's not true weight in the same way that, say, gaining "fat" is.
I don't completely understand it, but my sister who has had some really bad health problems had this happen to her and she gained a lot of weight, but over the past couple of years she slowly has been getting better, and she is smaller that she has ever been. I think when she really gets well completely she probably should gain a little bit back.
All that to say, just don't give up, and don't let the weight gain get you down if you can help it. I try to look at it as just a part of this process to my body healing and I try, though hard at times, to not put any time constraint on myself. I don't know if that helps you at all, but I hope you can find some encouragement in it. But if not know that your not the only one.
Reading your symptoms first brought to mind "gallbladder attack", in particular the pain that you describe under the rib cage. Is it more to the left or right? I had pain under my mid to right rib cage when I was having gallbladder attacks.
But it might not be gallbladder, if it is though, that doesn't rule out Celiac or gluten sensitivity. My gallbladder problems where because of having celiac disease.