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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New Here... Thing Gluten And Other Food Problems Could Be Life-long Problem With Depression Etc
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Hi I am new here. I have been voraciously reading the posts on these boards the last month... along with stuff on the net.

I wanted to finally post because I'm not sure what is up. I guess I could start from scratch here.

First off, I am of northern european background. Half Scandinavian, half English. Maybe some Irish in there.

When I was a kid I was a super student, top athlete, etc etc. Even the principal told me kids looked up to me.

In 5th grade something happened. I remember around the time I was trying to eat really healthy in order to be better athletically, to get into the olympics (i was extremely ambitious)... I'm 26 now, but back then fat was the devil. So I ate ZERO fat practically, thinking it would be unhealthy. Instead I remember eating lots of carbohydrates...refined energy bars things like that.

I also was taking lots of vitamins for energy. Bee pollen, ginseng, royal jelly...

But something happened to me...and it happened fast. I burned out from everything. Quit all of my sports teams...started ditching classes...stopped talking to all my friends...even my family. I became really messed up and depressed, and it has never been the same since.

In high school tried some meds. Prozac... felt better. Freshman yr in college decided to try to figure myself out from a holistic avenue. First thing I did was eat spaghetti every night, reading stuff about complex carbs were good for you:[

Exercise plans, herbs, even bouts on Paxil. Paxil was the only thing that made me feel more normal.

I never wanted to rely on pharmacueticals however.

A few years ago I was doing kinda good in my life. I was eating very chinese-style. I had stopped eating dairy. Probably had stopped eating gluten (without realizing it)...mainly just tofu, dark green leafy vegetables...etc...

A year ago I finally experimented with raw foods. Read about it alot and went for it. I experienced some new ways of being on that. And it was from that experimentation that led me to this whole idea of gluten intolerance.

The last 2-3 months I started playing around with gluten stuff. Taking it in and out of my diet. After a bit of time without using as much of it, I had to return back to the US after some time in Europe. I bought a big loaf of rye bread (with sugar and other stuff) and ate it while on the flight back. BAD MISTAKE. That was the first time I really had digestive problems related to gluten I think.

Maybe I had some of it all along, but I think my body also had built up a barrier to it somehow.

Anyways, so I decided to go off gluten completely. A week later I went off casein completely. And then a few weeks ago soy. But after a month going off gluten I decided to try the challenge test. I sorta inadvertently was eating pie filling after thanksgiving...thinking I would be okay. After a few days of that, I found myself in my room on my computer. I suddenly felt just...weird. Zombyish. I realized I had accomplished nothing that entire day and felt brain fogged. Then out of nowhere a suicidal thought entered my brain... at that moment I thought, "Was I just glutened?"

4 hours later the body pain started hitting me. With a throbbing headache. It was pretty intense. I've never had pain like that my whole life. I couldn't sleep that night. It lasted 36 hours. I couldn't eat anything for three days it just ran straight through my system basically.

So I pretty much realized at that point I was gluten intolerant.

It might explain some things. Like how in college and high school, and probably middle school, I would eat bowl after bowl of cereal. I can taste the captain crunch. I would gorge myself on that stuff.

My whole life I have had so many issues. In high school I wanted to die everyday. Life seemed so hard for me from such a young age. And the pain and hardship never went away. It never seemed worth it. I would go on my roof and cry out to God... yet I couldn't even cry. I was so numb. I didn't know what to do.

When I took Paxil in college it was like I was released from Hell. I knew it wasn't the answer though. But it was a nice vacation. I knew I had to figure out the underlying cause.

So now I am on these boards. I have been reading so much about people's symptoms.... how they went 5,10,15,40 years of pain and suffering... only to realize it was gluten.

And I hope this applies to me also. But I'm not sure.

That is why I am here. I hope to learn and share my own experiences. I have only been off gluten a month or two. I think I have noticed some positive things. Its hard to say, because right now I am under more stress than I probably have ever been in my entire life. That is another story though... but I seem to be handling it okay.

I have been pondering the last few days if I have candida. I scored too low on one of the quiz's online...so that would suggest i -don't- have it. I did the spit test and it would suggest I do. I just wonder... thats all.

I guess I just wonder if things will get better from this point on. How long does it take? Seems I have been having some good days, but then some bad days. I wonder if my villi are repairing. If they were damaged in the first place, etc.

I do not think I have celiac. I have never had much else except mental problems and fatigue and all that.

Hope to learn, Thanks

CuriousOne

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Welcome to the forum!

Some Celiacs don't even have many symptoms , and fatigue and brain fog are very common so don't rule out Celiac Disease because you don't have the traditional symptoms.( bowel / digestive problems, DH)

Just be aware that if you want an endoscopy or blood tests for Celiac, you will need to be eating gluten , my damage is so long term that even after 12 months almost completely gluten-free, I still have atrophied villi and high antibodies. I am having another endoscopy in 12 months to see if there has been further healing .

I'd give anything to have been told at age 26 that I had Celiac Disease or that gluten might be my problem but it's all water under the bridge now

Whether you are gluten intolerant or have Celiac Disease is a moot point in that the answer is the same ...no gluten

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So I may have celiac... thats interesting.

Either way I have already gut out gluten. I figure if I had such a bad reaction when I gluten challenged myself...then I bet I have been really hurting myself all of these years.. to think of how I would gorge myself with cereal and milk everyday for years.

I am glad I know now, if this is indeed my problem. But I have been through lots of pain and misery and depression since I was 12.... 14 years of that. Wasn't easy. I thought I was alone but now I realize some people have had it much worse. I used to feel sorry for people in places like Africa...meanwhile I was living probably a worse existence then they were.

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I've also suffered from depression off and on since my teenage years, and had some kind of "emotional problems" in elementary school that were severe enough to land me in special ed. I'm not sure if I ever had any kind of diagnosis as a young child, but I do know that my Mom considered putting me on the Feingold Diet when I was little (until my therapist talked her out of it :rolleyes: ) so I probably had symptoms of ADD (innatentive type)- the exact same thing my 11yo had symptoms of. I'm currently homeschooling her because she doesn't learn well in a school environment. I don't let her eat any synthetic crap but I still let her have gluten and dairy- she may do well off of those things but neither of us is ready for that kind of major change. Once I've healed up more I'll be in a better place to help her with dietary changes.

Anyway, I have fibromyalgia and it seems that FMS and "being glutened" have similar symptoms. I'm really hoping that dietary changes will bring about a relief of symptoms, if not a complete cure.

I now notice GI symptoms with a single exposure to a food my body doesn't agree with, which didn't happen when I was eating them all the time. I suspect my body has gotten used to being without these "poisons" and wants to clear them out of the gut ASAP when I accidentally ingest them. When my system was overwhelmed with gluten, my body just gave up and digested them as best it could.

I also notice that I get irritable when I eat foods that don't agree with me- a single ounce of soy nog in my morning coffee made me less patient with my kids all day. Ugh, and here I am staring at an ad for brown cow yogurt- yeah, it's gluten free but if I eat dairy I'm just as sick as if I eat gluten. :angry:

I haven't had any kind of testing done. My attitude is that if dietary changes help, then I don't need any lab tests, I'll have my proof, and a negative test isn't conclusive of anything anyway. Does it matter if I'm "allergic" or only "sensitive" to these foods? If I can't eat them without being sick, then I can't eat them period!

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Interesting story Ruth, thanks for sharing.

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how weird...

i woke up this morning... feeling like everything was just wrong. i wanted to leave where I am...move on...etc etc.. just depressed. didn't have motivation for anything.

its either because this is how i truly feel about everything...OR

i got messed up from some chinese food yesterday, which is possible.

i asked the lady about gluten...but really they are all clueless aren't they...

i know that sauce had something in it!! had to... hehe... tasted too good...

I think it at least had soy...

Frustrating because... I'm trying to figure out life and everything...where i want to live...and how can you do that when life just seems so blah/depressing/pointless...

this gluten and/or soy/casein stuff is amazing i tell ya...

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A couple of things that could have been wrong with the chinese food:

1) There could have been wheat flour in the sauce, or soy sauce brewed with wheat used to flavor the sauce.

2) there could have been cross-contamination in the kitchen

3) you might be reacting to something else that was put in the food, such as MSG

4) you could be allergic to another food that was in the chinese food that you haven't been including in your diet just because you didn't think to cook with it- a certain kind of mushroom, baby corn, etc.

Considering the probablility of having consumed gluten in the restaurant meal, either from the soy sauce or from cross contamination, I wouldn't jump to any conclusions about additional food allergies at this point.

I personally haven't had any meals prepared by anybody but myself since I started being gluten-free- but then I'm broke and hardly eat out anyway! Cooking all my own meals is nothing new. I know there ARE ways to stay safe while eating out, but I'm not familiar with any of them yet.

how weird...

i woke up this morning... feeling like everything was just wrong. i wanted to leave where I am...move on...etc etc.. just depressed. didn't have motivation for anything.

its either because this is how i truly feel about everything...OR

i got messed up from some chinese food yesterday, which is possible.

i asked the lady about gluten...but really they are all clueless aren't they...

i know that sauce had something in it!! had to... hehe... tasted too good...

I think it at least had soy...

Frustrating because... I'm trying to figure out life and everything...where i want to live...and how can you do that when life just seems so blah/depressing/pointless...

this gluten and/or soy/casein stuff is amazing i tell ya...

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Thanks Ruthla,

I'm sure it was something.. In fact I think it was the soy. I didn't get any digestive discomfort at all. All I know is I woke up the next morning just depressed...I had suicidal ideation yesterday too... one of those things. Like thats just how I felt yet I knew something was possibly messing with my brain... I think it was soy since... I seem to remember after getting off gluten and having a few glasses of soy milk...(this was a month ago or so)...within 20 minutes of drinking that... I was suddenly writing this blog on the internet about death and dying... it was just so weird how all my thoughts just suddenly turned to the darker/grimmer side of things.

Normally now I eat alot of raw foods. I like to eat raw cacao beans (omg)... I usually feel pretty dang slick these days :) Just goes to show you REALLLLLY have to be careful in restaurants. I don't go out alot anyways...but for now on I guess it will just have to be rice...

Even at the cheaper fast food type japanese teriyaki bowl places... I found they marinate their meats in bad sauces..and also put butter in with the veggies. GEEZ!! What is WRONG WITH THE WORLD!!!!

When did soy have to be added to everything!! When did casein have to be added to EVERYTHING!! When did a simple butterfinger or candy bar have to have a plant that was mainly native to the asian diets added to it?????

AHHHHHHHH

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That is the best explanation of the feeling I've ever read. I can't explain what the difference is between feeling like that and not, but it's profound. That is how I feel when I've been seriously glutened. Everything takes on a significance that is unrealistic. The difference between how I think and feel about things when I'm on gluten and how I feel when I'm off it is night and day. I was on Celexia for a year or two and it made a huge difference to me as well. Probably the most important thing it taught me was what "normal" feels like.

Violet

My whole life I have had so many issues. In high school I wanted to die everyday. Life seemed so hard for me from such a young age. And the pain and hardship never went away. It never seemed worth it. I would go on my roof and cry out to God... yet I couldn't even cry. I was so numb. I didn't know what to do.

When I took Paxil in college it was like I was released from Hell. I knew it wasn't the answer though. But it was a nice vacation. I knew I had to figure out the underlying cause.

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so does it really take up to 18 months for the villi to heal or whatever?

or 6-12 months for the caso and other morphines to exit your system??

can i expect myself to be some glowing super human as the months go by?

i do feel better already and its been a few months...

but i wonder if i could feel even better... sigh.........

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Probably the most important thing it taught me was what "normal" feels like.

yep...normal!!

i'm starting to think one role of the serotonin making in the gut is to calm the gut. foods that inflame/irritate the gut are bad...the brain's response to an inflamed gut is an anxiety mode...

its almost like... if the gut is inflamed/irritated... you feel anxious etc etc. if its all sluggish and gunked up...u feel depressed and slowed down/fatigued...

i wonder if how we "feel" is actually more a function of our gut than our head. I bet you its probably true!!

so what SSRI's do is they go in there and cause the cells in your gut to release more of their serotonin...which sorta just numbs and soothes the gut... reguardless if you are eating tons of foods that would naturally cause your intestine to go in shock (since it was allergic and your gut didn't like it).

so typical of western medicine to put a bandaid on an inflamed gut instead of removing the cause of the inflamed gut to begin with.

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Yikes i don't know what happened recently.

I soaked some generic brand oatmeal overnight, then ate it. As I was eating it... after 4 bites I decided I didn't want to take a chance.

Then the last 3 or 4 days I've been feeling really bad. Just angry. Irritable. Not as much energy.

2 days ago I started eating more potato chips and also was eating rice. Oh yeah, and a few cans of refried beans.

And I noticed my tongue is white.

And now I wonder, do I have candida??? Or have I been mildly glutened, and thats the reason for the white tongue? I don't know what to think....

I've gone back to eating just mainly raw foods...fruits, some salad...dates...nuts...etc... my system seems to clear pretty fast.

I've been worried and confused...thinking that maybe I have candida and eating all that starchy stuff, over the period of a few days..caused an outbreak. But now I wonder if I just was glutened from the stupid oatmeal and now am dealing with it...

So hard sometimes

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I also now wonder if after being glutoned, you can speed up the process by fasting on water. Why? Possibly because the body just going into auto-immune mode and starts reacting to everything...so everything you put in your mouth might keep irritating it. What if you just fasted on water and the immune response went away after a day. Beats a week or two. I'll have to try this personally.

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Yikes i don't know what happened recently.

I soaked some generic brand oatmeal overnight, then ate it. As I was eating it... after 4 bites I decided I didn't want to take a chance.

Then the last 3 or 4 days I've been feeling really bad. Just angry. Irritable. Not as much energy.

2 days ago I started eating more potato chips and also was eating rice. Oh yeah, and a few cans of refried beans.

And I noticed my tongue is white.

And now I wonder, do I have candida??? Or have I been mildly glutened, and thats the reason for the white tongue? I don't know what to think....

I've gone back to eating just mainly raw foods...fruits, some salad...dates...nuts...etc... my system seems to clear pretty fast.

I've been worried and confused...thinking that maybe I have candida and eating all that starchy stuff, over the period of a few days..caused an outbreak. But now I wonder if I just was glutened from the stupid oatmeal and now am dealing with it...

So hard sometimes

I've seen several other people on the forum talk about their tongue being white. Maybe those threads can help you.

http://www.glutenfreeforum.com/lofiversion...php/t12925.html

http://www.glutenfreeforum.com/index.php?showtopic=11423

Hope that helps.

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I would look into doing a candida diet if I were you. With such a carb centric diet for so long it makes sense that candida might be the root of your problem with all the carb cravings (thats what the candida feed on so they make you crave carbs and then you become addicted to it). I know that when I was being treated for candida with a ND we talked about how my mom's lifelong struggle with depression that eventually led to the development of psychosis and complete disability was probably candida based. He said that he's even seen patients with schizophrenic symptoms get relief from killing off the candida and removing gluten/caesin from their diet. If you have a white coating on your tongue it means that you have a problem with candida. In a normal body your immune system would be able to fight it off but your immune system can be impaired by chronic candida. Do you remember if you took antibiotics before all these depressive symptoms started when you were young? That might have been what started it. When I finally got my candida under control I had so much more energy and was so much more happy every day . . . my mind was sharper, even my senses were stronger . . . taste was stronger and colors seemed brighter. Its amazing really.

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psipsina, i'm glad i decided to check this message board since its been awhile... just saw you responded to me today.

Yes, I have been considering candida...

I know I reacted badly to the gluten challenge. Haven't touched gluten since. Maybe 2.5-3 months now. But I think I may have issues with candida...definitely...

So I'm wondering if I should go see a doctor or something...but I don't know who I can see with my insurance...

I definitely consistently fail the spit-test... but I wonder... do any "non-candida" people fail the spit test????

Thanks..

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By the way, I do not think I've ever taken anti-biotics but I can check with my mother.

BTW - I just took the full candida quiz on candidafree.com.... and it said I probably don't have a yeast problem...

So I'm thinking either thats untrue...

Or I really do just have a gluten intolerance problem that caused a leaky gut...

?

I just wish things would get better. They are okay but I've had setbacks..

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By the way, I do not think I've ever taken anti-biotics but I can check with my mother.

BTW - I just took the full candida quiz on candidafree.com.... and it said I probably don't have a yeast problem...

So I'm thinking either thats untrue...

Or I really do just have a gluten intolerance problem that caused a leaky gut...

?

I just wish things would get better. They are okay but I've had setbacks..

I know there is a stool test that they can do to test for candida overgrowth. I had it done with a naturopathic doctor so I'm not sure if a regular doc that insurance would cover would or wouldn't do the same test. That test was the cheapest out of all the ones I did so it might be worth it to pay for the initial visit with a naturopath and the test (I think the test was only 50 bucks). I thought for a while that everyone must fail the spit test but I made my husband do it and he passed so maybe there is something to it. My best friend failed it and is refusing to do anything about it because giving up gluten is "too hard". As much as the restrictive diets can suck I feel like not knowing whats really wrong with you and suffering throughout your life with something that could be fixed is even worse.

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I have no issues with being on a restrictive diet.. definitely no issues with that.

I just am trying to figure out what it is. Its only been 3 months gluten free. 2 months dairy/soy free. So if gluten-intolerance was my main issue (which caused leaky gut - don't know why else I would be intolerant to dairy/soy)... then maybe I just have many many many more months to go...

Seems it can take up to 18 months for the neurological stuff to subside.

Then again I could have candida and that is either the cause of leaky gut or just a side effect of gluten intolerance. I do fail the spit test...?

Well I think the important thing is that I now have ideas and things to look out for. I know what I can try to tackle when I'm ready to do it. Before I was a lost little boy wandering around a pitch black forest with no exit.

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I have no issues with being on a restrictive diet.. definitely no issues with that.

I just am trying to figure out what it is. Its only been 3 months gluten free. 2 months dairy/soy free. So if gluten-intolerance was my main issue (which caused leaky gut - don't know why else I would be intolerant to dairy/soy)... then maybe I just have many many many more months to go...

Seems it can take up to 18 months for the neurological stuff to subside.

Then again I could have candida and that is either the cause of leaky gut or just a side effect of gluten intolerance. I do fail the spit test...?

Well I think the important thing is that I now have ideas and things to look out for. I know what I can try to tackle when I'm ready to do it. Before I was a lost little boy wandering around a pitch black forest with no exit.

It is definitely empowering to at least know your on the right path towards health. With me two weeks on the candida treatment and diet and my neurological symptoms disappeared! I didn't even realize what a cloud I was living in for years until it was lifted. I've been trying to talk my best friend into going to see a naturopath because she has all the symptoms but she is terrified of the restrictive diet. I'm weird in that I like the challenge of it and I like knowing that my health is in my own hands. Good luck figuring out what will work best for you!

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