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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Lectins And How They Hurt The Gut
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ksb43    0
I thought people might find this article interesting. It suggests there's a relationship between lectins and celiac disease.

Science News Daily: Why Red Beans And Rice Can Be Nauseating

Take a look at this one:

http://www.krispin.com/lectin.html

You never know with the internet how factual any of this stuff is (the article is pretty old too), but it sounds plausible. I have been avoiding gluten for 3 or 4 months and still not feeling great. Maybe I should try to avoid lectins. I never know how safe a diet like that would be though. I want to make sure I'm not missing out on something else I need.

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kevieb    0

these articles were really interesting---ok, i didn't read the second word for word, but got the gist of it----just wondering if anyone else gets feeling almost overwhelmed by how many different foods could possibly be causing problems for them? i would like to experiment with eliminating more foods to see if i could help my fibro, but i just can't seem to wrap my mind around the complexity of it, yet.

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ksb43    0
these articles were really interesting---ok, i didn't read the second word for word, but got the gist of it----just wondering if anyone else gets feeling almost overwhelmed by how many different foods could possibly be causing problems for them? i would like to experiment with eliminating more foods to see if i could help my fibro, but i just can't seem to wrap my mind around the complexity of it, yet.

Its ridiculous, and there's so much junk you can read about out there that it can make you nuts. I wonder if a lot of symptoms can be in your head just because of how much information we're bombarded with. What you should eat, what you shouldn't eat, what supplements you should take, what medicines you should take, etc. Isn't it ridiculous that we see ads for medicines these days and all the sudden the disease is a lot more prevalent? Something is wrong here. Either something is making everyone sick, or we're making ourselves sick. Somewhere down the line after everyone's head is spinning from all of the contradicting information, it seems like people have lost the ability to know how and what to eat...I know its making me crazy.

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tBar-251    0
Its ridiculous, and there's so much junk you can read about out there that it can make you nuts. I wonder if a lot of symptoms can be in your head just because of how much information we're bombarded with.

OK wait just a second here! You're upset because you've just learned about another food protein that makes people sick, and your reaction is to say that it's all in their heads? Are you a doctor by any chance??? Because your reaction seems typical of a lot of doctors, when people affected by gluten suggest that their symptoms may be gluten related!

What I got from those articles is confirmation of what other people have been telling me for a few years now, that nightshades are bad, that beans are bad, etc. There are tons of people walking around (or not!!) with debilitating arthritis and other health issues, which could well be caused by lectins. I personally know people who have gotten their lives back just by changing their diets to avoid nightshades. I'd say this is a good thing. If glutens/gliadins can adversely affect some people, why not other proteins? Why not lectins?

The writers of these articles are *not* trying to sell you a drug or make a ton of money or anything... they just want to spread the news and help people feel better. This is definitely a good thing. Obviously, celiacs don't hold a patent on feeling miserable because of a certain offending food protein, and that information only serves to broaden the scope, and also to (hopefully) help doctors to have a better understanding and awareness of the issues surrounding food sensitivities, including that of gluten intolerance.

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darlindeb25    5
I wonder if a lot of symptoms can be in your head just because of how much information we're bombarded with.

Saying something like this is what makes a sufferer doubt themselves and that isn't fair. I was gluten free for 3 yrs before my soy intolerance kicked in, then in a short time corn followed, soon nightshades, cruciferous veggies, no red meats and then I lost rice. All within a 2 yr time frame and it's not in my head, I know that. For a time, I thought I could handle little amounts of soy, like in margarine, until I couldn't get rid of this nasty rash on my tummy. I started using butter and the rash disappeared. Then my Hellman's Canola Mayo changed their ingredients so they were cholesterol free and added soy--which I didn't catch, the rash came back, immediately. I also can't use products with gluten, soy, corn, or oats on my skin, I break out in rashes, hives, etc. So, no, it is not in our heads.

I have been gluten free for 7 yrs now and I wish I was "just" celiac. It would be so easy for me to be "just gluten free". I love veggies, a salad for a meal makes me a happy camper, but I can't have that anymore. I have finally found a happy balance for my tummy and it's been doing ok now for several months. My diet is very boring though, same thing, day after day.

I wish I had been diagnoses years earlier. I was 44 when I finally found out about celiac disease and had been sick for over 20 yrs. Maybe if I had known years earlier, maybe these other intolerance's would not have come about, I do not know. I have peripheral neuropathy, small fiber neuropathy, raynauds, headaches everyday of my life, tinnitus, terrible exhaustion, and now, at my first visit with an ENT yesterday, he discovered a hole in my septum, which he feels is probably related to auto-immune disease in some way--maybe having something to do with the headaches--who knows----but, in our heads, I THINK NOT.

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ksb43    0

Woah. Calm down people. I wasn't accusing anybody of being a hypochondriac. I think you missed my message completely. I was accusing the sources of everything from internet articles to magazines to television commercials.

Im saying there's tons of people out there with there own agendas (even if its not selling a product, people who believe in something often try to get everyone else to agree...religion for example).Theres a ridiculous amount of conflicting information, and we take it all in all day everyday. I'm just saying if you listen to everything you read you could go crazy and eventually all you'll be left eating is grass. Take a magazine like Men's Health for example. On every page it tells you 15 different things you should be doing differently, supplements you should be taking, foods you should be eating. There's no way anyone can follow that. On top of that, 10 pages later you'll find information that says the complete opposite.

My point is you should take everything with a grain of salt. I wouldn't have posted that article if I didn't think it was interesting, I just dont know how much I would trust something on the internet from 2000 that clearly says it's a preliminary paper.

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Nancym    3
these articles were really interesting---ok, i didn't read the second word for word, but got the gist of it----just wondering if anyone else gets feeling almost overwhelmed by how many different foods could possibly be causing problems for them? i would like to experiment with eliminating more foods to see if i could help my fibro, but i just can't seem to wrap my mind around the complexity of it, yet.

I found the best thing was to take an evolutionary approach with diet. Eat foods similar to what people ate before the advent of agriculture. If you're interested, look into "paleo diet".

Science Daily's agenda is reporting on new science. I don't think they've got a hidden agenda to sell you a book or supplements. :P

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ksb43    0
I found the best thing was to take an evolutionary approach with diet. Eat foods similar to what people ate before the advent of agriculture. If you're interested, look into "paleo diet".

Science Daily's agenda is reporting on new science. I don't think they've got a hidden agenda to sell you a book or supplements. :P

I have heard of that diet and I was thinking about trying it, but I'm skinny and can't put weight on and I don't know if I could get enough calories that way. I'd have to eat like 60 pounds of fruits and veggies. I'm thinking of trying a variation of it, but I haven't had a chance to plan it out. Like eating mostly foods that don't have any weird ingredients so it would still allow for peanut butter, or cooked veggies instead of raw. But I saw someone on here wrote that even fruit has coatings on it to keep it fresh...so short of starting my own farm, I'm not so sure how practical a strict paleo diet would be. But I think its a good idea to eat more like that.

You never know, they could be seeking funding for more research or just trying to keep reader interest. I'm just saying everyone has an agenda to some degree.

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Nancym    3

Whatever.

As far as the paleo diet, there are plenty of high calorie options, I think I posted about your comment about eating 60 pounds of veggies them in the Paleo thread you posted in, so I won't repeat it here.

Paleo != raw, people have been cooking for a long, long time. Probably at least 140,000 years, some have the estimate much longer than that. It serves a purpose in our digestion, it breaks down cell walls of things we eat and makes nutrients much more available, and makes certain things easier to chew. If you didn't cook stuff, yeah you'd probably have a hard time getting enough calorie density. Sometimes it also serves to detoxify foods we couldn't ordinarily eat. It can also breakdown certain vitamins so it is a good idea to both raw and cooked foods, IMHO. Oh yeah, it also kills bacteria that might otherwise harm us.

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Candy    0

I know about Lectins. I read a book called "The Blood Type Diet" by a Dr. Dadamo and it says that foods have proteins that help or irritate each blood type -his website tell you about the lectins in each food so you can know what's in what you're eating. I'm a foodie and I've tried just about every food,but I didn't always feel good when I ate certain foods,but I didn't know why. I tried fresh coconut ,cinnamon,guarana,pumpkin,and chicken,and tomatoes and I can eat them ,but I feel not to good afterwards for most of them and I didn't know why.I primarily avoided them.

Much to my surprise they all have lectins that don't agree with my bloodtype.They are good for OTHER bloodtypes ,so if I can't eat lots of it ,someone else can - there is food that agrees with everyone,there is something everone can eat.

I also go with how I feel.That's what I did before I knew of lectins. I'd try something 3 or 4 times and if I felt it wasn't digesting (like a piece of plastic-it all feels like plastic in my gut) ,or if it made me feel sick for days right after eating it then I knew not to eat it again,or eat it regularly.

:o I was shocked when I learned that all the foods that made me feel sick had lectins that I couldn't eat.

But it's true. Look into it.

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salamander    0

Hi,

I've been gluten free for about 18 months, and 15 of them have been great. The last 3 months have been awful! The doctor is fed up of seeing me and I think the diagnosis is soon going to be hypochondria! I now believe that Soya, cheese (possible dairy in general), some nuts, beans, coffee, alchohol not to mention others are causing me grief. The trouble is it's not always the obvious symptoms that I got with gluten. i.e. I'm not spending all my life on the toilet, but I'm certainly 'regular' when I eat these foods and I feel constantly run down.

I've bought a Paleo diet book and I'm going to try it. What have I got to loose?

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cavernio    9

Its ridiculous, and there's so much junk you can read about out there that it can make you nuts. I wonder if a lot of symptoms can be in your head just because of how much information we're bombarded with. What you should eat, what you shouldn't eat, what supplements you should take, what medicines you should take, etc. Isn't it ridiculous that we see ads for medicines these days and all the sudden the disease is a lot more prevalent? Something is wrong here. Either something is making everyone sick, or we're making ourselves sick. Somewhere down the line after everyone's head is spinning from all of the contradicting information, it seems like people have lost the ability to know how and what to eat...I know its making me crazy.

It makes me crazy too, however that it makes me crazy doesn't mean that nothing out there is accurate. I have an instant distrust for anything that I know is pushed or made by a pharmaceutical company (when you've been on drugs that are suppsoed to be safe and it turns out they aren't and it's clear that somehow someone just 'forgot' to mention symptoms in trial testing, you know something's amiss.)

The idea that something is making us sick is exactly what the idea of lectins are, and specifically, we know people recommending low lectin diets can't be working for any one thing to profit for themselves, beyond books or something (and in which case, why not just right and push a work of fiction?).

But I don't know why it should be such a revelation to figure out/consider that so many people just don't feel well the majority of the time. The internet didn't suddenly make people sicker, it just gave sick people a much larger voice. Why is it the assumption that most people are all healthy, or that healthiness is the norm? Where does it say that people are generally healthy? Also, where does it say all the food we eat is going to be beneficial to us, especially 'natural' food?

Where does it say, just because it's confusing and incredibly inconvenient, it means it's not true?

I mean, science is all currently astounding, including medical science, but it pisses me off to no end when just because a doctor doesn't have an answer for why you're sick, people think the sickness isn't actually real. Humanity really is just scratching the surface into research of how the body works and what happens if one small step in a process breaks down or is changed by the environment.

I imagine that back in the day of questionable doctors using leeches and whatnot, at least if you were sick people didn't think you were faking or grabbing attention or making yourself sick simply because the doctor was useless.

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kareng    1,992

It makes me crazy too, however that it makes me crazy doesn't mean that nothing out there is accurate. I have an instant distrust for anything that I know is pushed or made by a pharmaceutical company (when you've been on drugs that are suppsoed to be safe and it turns out they aren't and it's clear that somehow someone just 'forgot' to mention symptoms in trial testing, you know something's amiss.)

The idea that something is making us sick is exactly what the idea of lectins are, and specifically, we know people recommending low lectin diets can't be working for any one thing to profit for themselves, beyond books or something (and in which case, why not just right and push a work of fiction?).

But I don't know why it should be such a revelation to figure out/consider that so many people just don't feel well the majority of the time. The internet didn't suddenly make people sicker, it just gave sick people a much larger voice. Why is it the assumption that most people are all healthy, or that healthiness is the norm? Where does it say that people are generally healthy? Also, where does it say all the food we eat is going to be beneficial to us, especially 'natural' food?

Where does it say, just because it's confusing and incredibly inconvenient, it means it's not true?

I mean, science is all currently astounding, including medical science, but it pisses me off to no end when just because a doctor doesn't have an answer for why you're sick, people think the sickness isn't actually real. Humanity really is just scratching the surface into research of how the body works and what happens if one small step in a process breaks down or is changed by the environment.

I imagine that back in the day of questionable doctors using leeches and whatnot, at least if you were sick people didn't think you were faking or grabbing attention or making yourself sick simply because the doctor was useless.

Just to let you know- you are replying to a 5 year old thread. Likely that the original posters aren't on here anymore.

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cavernio    9

I'm not spending all my life on the toilet, but I'm certainly 'regular' when I eat these foods and I feel constantly run down.

I've bought a Paleo diet book and I'm going to try it. What have I got to loose?

I dunno about you, but I've specifically upped my supplement intake since finding out I'm a celiac. Afterall, the fact that I wasn't digesting things properly gave me the idea to be tested for celiacs. I figure if I've had years of nutrients not being absorbed, I should be trying to get as many as I can. Being 'run-down' constantly is my main health complaint, and I'm hoping just getting enough nutrition will fix that.

You haven't said you're on supplements of any type, so perhaps instead of thinking that you need to cut out foods, you may need to up one or more vitamins. Especially if you used to eat a lot of flour which has been fortified, you may look at the symptoms of not having enough of those nutrients in your diet, as you aren't getting them from the flour anymore. It's shocking how many symptoms simply being low in 1 vitamin or mineral can cause; pretty much all vitamin defiencies cause fatigue too.

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kareng    1,992

I dunno about you, but I've specifically upped my supplement intake since finding out I'm a celiac. Afterall, the fact that I wasn't digesting things properly gave me the idea to be tested for celiacs. I figure if I've had years of nutrients not being absorbed, I should be trying to get as many as I can. Being 'run-down' constantly is my main health complaint, and I'm hoping just getting enough nutrition will fix that.

You haven't said you're on supplements of any type, so perhaps instead of thinking that you need to cut out foods, you may need to up one or more vitamins. Especially if you used to eat a lot of flour which has been fortified, you may look at the symptoms of not having enough of those nutrients in your diet, as you aren't getting them from the flour anymore. It's shocking how many symptoms simply being low in 1 vitamin or mineral can cause; pretty much all vitamin defiencies cause fatigue too.

The person you are responding to has't been on the forum for about a year. I think we have had more recent discussions on this topic.

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