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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.

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16 posts in this topic

Hello,

So I have a bit of a story as to why im here. Several years back I was in the military and underwent a series of emotional and physical stresses I would label as severe. During the middle of these experiences I became very sick with stomach issues. This led to lots of other things, bad troubles sleeping, stomach discomfort, diahrea, severe fatigue, cloudy thoughts... The doctors in the Navy had a hayday experimenting with all sorts of possibilities as to what was wrong with me. I dropped like 40 pounds after several months of this. Eventually the doctors were baffled to a point they discharged me ( I assume out of fear for whatever reason) honorably. I became so fed up with doctors over the next year and trying to figure out what was wrong with me. May i add that i had a very horrible diet in my life for the whole extent of this...Living on all sorts of unhealthy combinations... I have always been a huge bread fanatic over the course of my life... Either way this all led to me dealing with these symptoms constantly for years. I was so fed up with doctors not finding out whats wrong that i took it upon myself to try and manage. Medicines and therapies did not help. Just recently over the past few months I resorted to trying to find dietary reasons for my problems.... It has essentially led me here... I have spent the past 2 days strictly gluten free with nothing but rice, plain chicken, hemp oil, and a couple other small things to keep myself fed... I am noticing a much greater tolerance to my meals with almost no nausea after my meals.... The difference was felt oddly sooner then I thought would be... This would be the short story of what led me here... I wanted to ask a community such as this if I may be onto the right thing here... I have a couple distant but blood related family members with celiacs so I thought i would try to see if this community could help me figure out what to do from here and if i am on the right track... Sorry for the long intro

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I think you've found the right community! Yes, it sounds as though you may very well have solved your medical mystery--many of us have similar stories to tell. Very few (if any) of us are fans of doctors as a result of many, many years of misdiagnoses and indifference on their part. Before you go much further with the diet, though, you should probably get tested for celiac by way of the full celiac panel. Do you have a good doctor at this time? Once you've been gluten free for a while, your blood tests will come out negative, so you should get tested right away.

If, however, you don't have health insurance, you may just wish to continue to eat a gluten-free diet and read the information on this forum. You won't have an official diagnosis, but you'll feel a LOT better!

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imo you should get tested before you continue with the diet. This requires you to be on gluten.

When, and if you go in, ask for the full celiac panel.

Only reason i'm suggesting this is if you go back on it now it will be less severe then if you wish to get an official dx later and have to do a gluten challenge for... three months i believe.

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I appreciate the responses... I am not on health insurance as of this moment... I have moved back from over seas and still establishing myself back in my home state. I am looking into my options for at least some sort of cheaper testing method. I am not exactly concerned about a certified diagnosis. I just want to feel better. After 4 years of what i have gone through symptom wise if gluten free is the answer im prepared to do it no questions asked... I dont care about knowing whats wrong so much as i do getting better if you get me. I am underweight and hate it... could barely get myself to eat one meal a day for years. and now so quickly im seeing improvement on myself so i felt like this would be a good community to aquaint me with changes. I find forums very helpful. . . and as i sure you get alot on here.... im loaded with food questions and google doesnt always spit out comforting answers when it regards to food.

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Hi Andrei,

Welcome to the forum! I posted some thread links that would be good reading for you. Getting better on the gluten-free diet is a good reason to stay on it. It is pretty common for people to have kind of a rollercoaster progress for the beginning of the gluten-free diet. So you may find yourself getting sick and then getting better getting sick again etc. Your body needs some time to heal and the bacteria changes in your gut can result in some issues. Some people even have withdrawl symptoms from gluten. Try to avoid processed foods for a while and stick with whole foods. In other words nothing in boxes or pre-made meals. Cooking from scratch is much safer to start out, and you don't need to spend lots of time reading labels in the store.

People also report being more sensitive to small amounts of gluten after being gluten-free for a while. So being careful to avoid traces can be important. You should get a new toaster, and colander. Stainless steel or cast iron pots and pans are ok if scrubbed thurougly. Scratched teflon pans and plastic and wooden utensils should be replaced, as they are difficulty to clean adequattly.

If corn doesn't bother you then Mission brand corn tortillas are a good sub for bread. Warm them up a ilttle so they bend without breaking. Rice cakes and peanut butter are ok except for Quaker brand is somtimes a problem. Eggs and meats, nuts and fruit and veggies are good food choices.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

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I appreciate the response with tips on this. I am getting well aquainted with eggs, rice, corn chips, and I am bulking up on some chicken and potatoes.. I will probably stay pretty strict on that for a while... Each meal im noticing more and more of a tolerance without that fatiguing nausea afterwords. Im glad I love to do experimental cooking... I was feeling a bit bummed out earlier but then i sat down to see what kind of items i have to get creative with and im surprised to say the least. I may have to do a gluten challenge later because I cannot afford the healthcare or tests as of now... I just want to put some weight back on and feel better.... a formal diagnosis is not of high concern... Once again i truly do appreciate the info :) tons to learn here for me.

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I essentially started researching on my own to find out what was making me feel so badly. I first feared fibromyalgia because my sister has it, but my symptoms varied too much to think it was that. I found celiac symptoms to almost mirror how I was feeling and after a lot of research I went gluten-free. I did it wrong because I should have gotten tested first, but you're without insurance and have been run through the wringer. At that point I would tend to agree with your method to do the gluten-free thing and if you feel better as a result, stick with it and accept it as if it were diagnosed. Obviously a diagnosis is the proper way to go for many reasons, but if you're unable or unwilling, you've taken the right next step. I would, however, get tested for vitamin/mineral levels to know what needs supplementation, even if it costs you out of your pocket to do so.

I felt like a new man after 2 days and most every symptom was completely gone by 4 days gluten-free. Only my sinus issues lingered longer, but they also lingered longer after being glutened so I assume that's normal for my body. Best of luck to you!!

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Yep, lots of reading is good Andrei, Here are some more threads for when you run out of reading.

The short temper thread is about some of the mental affects of gluten, which sometimes surprises people that don't understand that diet can affect our brains. The cheating thread is a topic that comes up now and again, as people womder how strict they really need to be.

The microwave bread thread might fit with your experimkenting. Easy and quick too.

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

http://www.nature.com/ajg/journal/vaop/ncurrent/full/ajg2012236a.html

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These threads have been amazing!!!! You guys are awesome.... So if you are still following my thread i have achieved 72 hours gluten free.... I would like to quote " I feel like a new man". I have a smile on my face that i have not had in years and a full belly that is not taunting me with pain. While i wear myself out kinda of easy there is no doubt I have gone the proper route. My wife is still currently in Bulgaria. When I make my next trip out there in the spring I will go through a proper diagnosis there. The medical costs are practically free for citizens and residents there and the doctors are wonderful. The doctors are lawfully allow to recommend and prescribe homeopathic remedies there as well. I feel I will get much more reliable answers from a doctor that is not paid to tell me one thing without leeway. But yes 72 hours and I just have a feeling I cant describe... Familiar but long since felt. It is quite nice. I long to have the energy to keep up with my 18 month old baby boy... This is very important to me and will motivate me to keep with this diet. I am getting ready to do my first gluten-free grocery visit in a few days... But as a symptom question I would like to ask... would loose stool and random flashes of fatigue be normal along with some brain fog on my detoxing.... I am so lightweight and small that I feel I will detox fairly quickly... 5' 10" and 128 pounds.... if that matters...THANKS AGAIN GUYS!!! The links are great

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P.S ...... with the comment about the short temper.... FOR MY ENTIRE LIFE I have been the most gleeful full of life person people knew... Till I got sick 4 years ago and this irritability came about me that was surreal. It wasnt me... I couldnt convince others as to why I was becoming like this... Like a grouch with no desire to see light anywhere. It greatly affected my relationships in my life and really cut down on my self esteem... I knew inside that it was not who i was and how i really felt... Its like i was involuntarily being an ass to people... I am starting to feel like its the fact i was living in gut pain and nausea for so long and possibly the gluten... I have been so overwhelmingly happy today...I didnt expect such quick energy and mood changes... But each day is better

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Hi Andrei,

Congrats on the 72 hours! You are on your way! I do want to caution you about testing though. If you are going to get tested, it is much better to do that right now. If you wait until later you will need to start eating gluten again for possibly up to 3 months before the antibodies build up enough to show on a test. Even then they may not be detected. The antibodies are mostly in the gut/intestine where they do their work. So if you plan to get tested it is much better to do it right away.

One of the classic signs of celiac disese is called failure to thrive in children. It is when children are slow to grow. These children may have bloated stomachs and poor digestion. Celiac causes damage to the gut and that inhibits absorption of vitamins and minerals the body needs to grow. So children with untreated celiac are ofen shorter and thinner than others.

I had unexplained short temper myself. I became very impatient for a period while I was still eating gluten. Very different from my usual self. Celiac can also cause depression and anxiety.

Celiac is an inherited condition, but not everyone who has the genes will develop celiac. About 30% of the USA population has a celiac gene. But only 1% develop celiac. So your children should be monitored and tested yearly for antibodies. Or at least if they develop symptoms that continue for several months. Celiac is an autoimune condiition and people with celiac have a higher chance of developing another autoimmune condition. Generally it seems like that happens more frequently when people with celiac continue to eat gluten for many years. Usually because they don't know they have celiac. The chance of developing other autoimmune conditions seems to decrease when gluten is removed though.

http://www.celiac.co...-and-Disorders/

It may help to take some extra vitamins during he first 6 months or more. It is good to get tested for vitamin and mineral deficiencies so you know if you need to supplement them.

I hope you stick around and feel free to ask questions. We all started the gluten-free diet at some point and had to learn about it ourselves. So we have an idea what it feels like to start new. :) Congrats again on feeling better, I hope you continue to improve! :D

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Thank you. We will be getting our child tested but as of now our son is 18 months old standing 34 inches tall and weighs 32 pounds... Doctors keep telling us he is the healthiest child they have ever seen. He is always happy and he is past the height weight standards for a 3 year old and not even two haha. It is very nice to see him so healthy. So by the time he is four before school and everything we will get him tested so if need be we can get his diet changed up before he is enrolled in school. As of now he doesnt show the slightest symptoms of anything being wrong. I do understand that i should get tested. But here in the U.S health care is outrageous. I have called every place in my city. I cant get the test for anything under 350 around here. I have played around enough with my diet over the past half year to narrow down what was causing my problems. I do not need a diagnosis to feel better about my decision. I can get a complete diagnosis with endoscopy back overseas for under 100 dollars from the best doctors in the country there. The medical industry does not savagely pillage money from the lower class over there as they do to us here. Like i stated their doctors actually practice homeopathy and are allowed to give all natural suggestions. If something can only be cured by a plant over here doctors are not allowed to tell us that. They are such a profit organization in this country. Sorry to rant about that.... The medical care i get overseas is 1000 times better then what i receive here. If i have to go through the gluten challenge i acknowledge ahead of time that i was pre informed and I am doing so at the risk of terrible pain in the name of a diagnosis....

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It always shocks me how many people here seem to have their doctors overlook celiac. Like what the hell is wrong with the medical community? You don't constantly ignore crohns, ulcerative colitis etc... why do they always look past something so basic? Drives me nuts. Celiacs is MUCH more common than crohn's, I remember reading crohn's was something like 1 in 10,000 and celiac is 1 in 100.

I am in disbelief that you have been overlooked by several doctors for so many years, not once did it cross their minds to test for celiacs... What are they learning in medical school?

Hopefully you found your answer, get the required tests and get back to living a normal life.

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It always shocks me how many people here seem to have their doctors overlook celiac. Like what the hell is wrong with the medical community? You don't constantly ignore crohns, ulcerative colitis etc... why do they always look past something so basic? Drives me nuts. Celiacs is MUCH more common than crohn's, I remember reading crohn's was something like 1 in 10,000 and celiac is 1 in 100.

I am in disbelief that you have been overlooked by several doctors for so many years, not once did it cross their minds to test for celiacs... What are they learning in medical school?

Hopefully you found your answer, get the required tests and get back to living a normal life.

.....follow the money......
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Sounds good Andrei, you do what works best for you of course. I agree, medical care is darned expensive here in the U.S. This forum helps a lot because we can share information on what works for us. Here is a thread on nettle tea and inflammation. So the doctors can't hide things from us forever! :)

http://www.celiac.co...r-inflammation/

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I really appreciate that. Homeopathy seems to be the only medical route i can take... My digestive track has no tolerance for lab created meds. and not sure if its mentioned on here and I will be sure to pass it onto the correct threads. But if anybody here struggles with Insomnia I would highly advise Skull cap or Valerian root as a excellent sleep aid. The valerian even promotes peaceful dreaming. Takes a few days to get working good and doing one week on and off swapping between skull cap and valerian root can really help keep anxiety down as well. Or depending on how many people here are medical marijuana smokers that works great as well. Ill go see what bit of info I can pass along here from my years of trial and error with symptoms. Thank you again :)

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WRONG.   I had a happy few months between Late March and August that seemed swell, except that I couldn't quite enjoy things like I used to, and I was saying things to my online friends that made them shy away from me. I was convinced at this point that I was just going crazy. My mother is schizophrenic so I just sort of took it as is and was getting ready to tell my doctor and see if the symptoms would go away if i stopped the pills. I didn't do this in reality, as a matter of fact, I told the GP I felt great and she suggested that I increase the dose from 10mg to 20mg. I didn't do this for a while, but I got into an argument with someone that I was just starting to become friends with and decided that enough was enough. I popped that extra 10mg and was ready to crank it up a notch to keep the depression at bay. It seemed to be working, but about a week later, I began to develop a burning pain under my right rib. Uh-oh! I started to google again, but my anxiety was still pretty much under control. I tried to convince myself I had colon cancer, but it didn't hit me hard until I told the doctor I thought the pills were causing the pain and that I was going to stop taking them. This is pretty much where things took a turn for the worst. One day, after I had a couple corn dogs and french fries, I went to the bathroom to find that my stool was yellow and there was blood. Immediately I panicked and called my GP. A lot of things have scared me these past few months, but none more than that instance. The occult blood test came back negative, what do you know. I was pretty healthy at around 147 pounds, my average weight. I told myself at that point that I would turn my life around before things got any worse. I wanted to go vegetarian and avoid meat for the rest of my life. That seemed like the best option at that point. Well, I was wrong, because I was probably b12 deficient, and where does b12 come from? Yeah.... Well, it probably wasn't colon cancer, so what else could I convince myself it was you ask? Pancreatic cancer. I rolled around in bed, night after night, feeling extremely tired, and at the same time, not being able to sleep. When I closed my eyes I had visions of what my organs would have looked like with cancer spreading everywhere. Other times I would envision my own funeral 2 months later after a very painful death. I was very spaced out. It was beyond brain fog. Not only was I so bloated I couldn't eat, but I just made it worse by taking immodium. After that it was god awful. If I was dying, I just wanted to know what was wrong with me, if I had any fighting chance at that point. I think I went down to 136 at this point. I got the blood test and was prescribed a different antidepressant by my doctor. I waited until my test results came back to take it. By that time, I had dark circles under my eyes and white patches on the insides of my cheeks. I came back to get the results of the test, and to my surprise there was absolutely nothing wrong with me (at least that could be seen from my blood). I already started eating meat again by this point. WBC 8.7 (normal) RBC 4.94 (normal) I wasn't even anemic. I swore that my skin started to yellow. I was constantly checking my eyes and suffering. I decided this was the last straw. I started to take the medication the doctor prescribed me, and I felt great! But a couple days later, I took the full dose and woke up the next morning, not being able to breathe and with a super fast heart rate and dilated pupils. This was my first time in the ER. The docs were dumb as rocks. They told me that it was "just anxiety". I couldn't even feel the move the left side of my body. I nearly died, and those kooks told me that I had anxiety! They made me sit in a chair for 30 minutes while the reaction went away! (not to mention I got the bill recently from that ridiculous debacle and they're trying to charge me $4000 for letting me in the door and sending me out.)   Anyhow I'll summarize the next few months between the ER incident and now, including a 2nd time I landed in the ER, wowee! -Lost 6 more pounds between that point and about a month ago. -Kept taking paxil and had several more reactions similar to the one that put me in the ER. -Learned about b12 deficiency and was convinced I had pernicious anemia for a while. Taking multivitamins staved off some of the symptoms, including the bloating. -Some mulitvitamins I bought actually made me feel worse including making my joints hurt, although this may be actually due to wheat, as i've learned -Fatigue became progressively worse. I've got Lymph nodes raised all over my body and I was sleeping most of the day before I stopped eating gluten entirely -Was constipated for days on end. My bowel movements improved with experimentation, although I still couldn't figure out what the problem was. I knew that things like French Toast would make my stomach hurt, but I didn't draw the conclusion because I was convinced that fatty foods would help me gain all that weight back (It obviously didn't. As a matter of fact it was probably why. I'm still sitting at around 132 but at least I'm not dead or getting worse from what I can gather.) -Extreme brain fog until I started taking large dose of sublingual b12. I play a lot of video games and my coordination was god awful.  -Took a non-sublingual b12 pill which made me bloat big time. I should have checked to see if those pills had wheat. -My hands and feet felt like blocks of ice, and my feet burned when I got in the shower. -Developed Tachycardia. I'm not sure when, but my resting heart rate is unsettling. Doctors said nothing about it -Diagnosed myself with several cancers and had several panic attacks which I used my b12 tablets to quell. -Tried to take Elavil again, and woke up with a strange feeling in my left arm, so I stopped taking it.   I ended up in the ER for the 2nd time a few weeks ago. This time I was sure I was going to get the answer I didn't want to hear. "We've examined your chest X-ray and found cancer spreading throughout your body" or something along those lines. I knew that there had to be something going on. I went in there for chest pain, but I had to tell the GP about what was going on. The weight loss, the abdominal pain that mysteriously disappeared months beforehand after I took the pills. He suggested that it must be some sort of malabsorption/malnutrition that was doing this, and I was convinced that an H Pylori infection was the cause. Anyhow, my chest X ray came back normal, as did my blood test, and when I got home, my grandma suggested that I look into Therapy. (as if that would somehow help with the chronic fatigue and other debilitating symptoms) I had nobody else to turn to, so I emailed my grandma and told her everything that was going on. She told me that she thought I had celiac disease, and so far, the results aren't too bad. I've gotten "glutened" a couple times so far, but my constipation is gone, and I've gained a little bit of my weight back. I'm not even sleeping as much as I was. I'm still going to see a gastro, a dentist, and a derma about my more serious concerns, but overall, I don't feel too crappy. I've even got my appetite back. Anyhow, if you've made it this far, I'm glad, as it has been a really bumpy ride for me. I've still got a lot of health anxiety about cancer, but I finally feel like I'm on the right path. I didn't even think I would be alive right now, especially not at 2 in the morning, with only minor aches and pains. I hope I can eventually get diagnosed and get used to this place.        
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