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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.

Starting A Gluten-Free Diet After 4 Years...
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12 posts in this topic

Let me start off by saying I am a 22 year old undergrad student that is at her wits end. I never had any type of intolerances growing up, not did i have food allergies or sensitivities. In 2008, I experienced a sever case of food poisoning from meat and have been on this roller coaster ever since.

The first year and a half after that occurrence I lived off of fruits, veggies, tea and oatmeal. The pain I felt was constant and included both constipation and diarrhea. It was as if my body didn't know what to do with the food I ate. I started working out to build muscle mass since I had lost so much weight and got used to not going out with friends since I couldn't eat anything. I've had a colonoscopy, endoscopy, and a biopsy of my intestines. Normal results. I've tried every OTC medicine for gas, heartburn, indigestion, ect. and have been on a few prescribed such as dicyclomine

Eventually I began to feel better and the pain and episodes got farther apart. Well, that leads me to where I am today. The episodes of abdominal cramps and diarrhea have gotten closer together and for the past 3 weeks I've been scared out of my mind because I don't know what else to do. symptoms are as followed:

  • gas
  • bloating
  • constipation
  • diarrhea
  • lower abdominal cramps
  • nausea
  • chest pain
  • fatigue
  • headaches
  • anxiety (idk if this is related)

My boyfriend's bio professor suggested I try a gluten-free diet to see if there are any changes. He suffers from celiac himself and said if I do turn out to have a gluten allergy but let it go untreated I run the risk of facing long term affects from possible damage.

ooOO and i don't have insurance, and won't anytime soon. I'm gonna try this thing for a month and see how I feel. I'm relying on the web to educate me about what i should avoid eating because I have no experience in this. Any advice or suggestions are greatly appreciated. it's very frustrating and depressing at times to feel like my life is so limited. I don't care about weight or calories, all I want to do is enjoy food like everyone else without considering the consequences and pain i'll be in later.

I'm open to anyone who wants to reply. I suppose I just want to feel like I'm not alone.

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Celiac is often triggered by a physical or emotional trauma. I'd say your food poisoning episode definitely qualifies! Your symptoms sound like they could well be celiac. Yes, even the anxiety.

The good news is you have come to the right place. Start by reading the "Newbie 101" thread. It'll help you find all of the places gluten hides so you can avoid cross-contamination. Expect to go through gluten withdrawal, which will give you headaches, constant hunger, and emotional upset. It lasted about three weeks for me. Then I started really feeling better.

But be aware that this is a rollercoaster ride. You will feel better, then you will feel worse. It takes a long time to heal and while we are healing, all sorts of non-gluten foods can make us sick. Don't give up though! Eventually the good days will outnumber the bad.

You may also discover additional intolerances. I had to give up soy and corn and most fruits and vegetables. I am slowly adding some of them back now. It was a year before I discovered that I can now tolerate corn starch, and believe it or not, that has made my life and my diet SO much easier.

I think the best way to start is with simple whole foods. Meat, veggies, and fruit. Fresh is better. Organic is best. (I reacted to non-organic foods at first. Pesticides and artificial fertilizers.) Rice is good. Brown rice is better. Potatoes are good unless you have a problem with nightshades (potatoes, tomatoes, peppers and eggplant). Sweet potatoes are really good because they are full of nutrition.

You should take a good probiotic too, and some folks swear by digestive enzymes.

It sounds overwhelming, and it is at first. I think every one of us here has had at least one meltdown at the grocery store. But it gets easier over time and eventually it becomes so normal you don't even think about it. The only time I think about it is when I get asked to eat at a restaurant. I mostly DON'T eat out actually, but I don't mind eating before I go and joining my friends for a beverage while they eat.

You will probably gewt lots of questions from your friends at first, but just tell them you have been diagnosed with celiac disease. That is not a lie - you are SELF-diagnosed.

I guess I'm getting ahead of myself a little bit - you are trying a gluten-free diet to see if it helps. If it DOES, THEN you can say you have been diagnosed.

ALWAYS have some gluten-free food in your purse. Some fruit, some gluten-free crackers, Lara bars, something. That way you will never find yourself hungry with no place to get safe food.

Now, read as much as you can here. Check out the "Leaky gut and other intolerances" section. Check out the "Pre-diagnosis and testing" section. Definitely the "Coping with" section. And all of the what's for dinner and what's for breakfast threads.

And then ask lots of questions. We don't mind if the questions have been asked here before. And remember, there is no such thing as a stupid question. We love to help. :)

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Welcome Rae!

Many here are self diagnosed and feel quite comfortable with that. If you choose to forgo testing, start simple. Meats, seafood, rice, veggies, potatoes and fresh fruit. No need for processed foods at the moment, or keep them to a minimum.

I would be as strict as possible for over a month or so. If you have a possitive dietary response, you can conclude you have Celiac Disease or some level of a gluten sensitivity. Both are rx'd by a gluten free diet. Some find relief immediately, others take longer. I would concentrate on removing gluten for now. And if you don't feel better, you may look into other foods as a problem. But, do take one step at a time.

As a college student, there is no need to deprive youself...there are several adult beverages available :rolleyes:

Take a walk around here. It's a great place for information and support. :) Once you get use to what you can eat, you will find that your sacrifices are only small ones. I do not feel deprived.

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You just discribed me before i went gluten free. Mine started badly after i had a nasty case of the flu (missed a full week of college classes, no fun), an allergic reaction a week later, and finally my gallbladder starting to go on me. I think its the combo of these three things that Celiac decided to rear its little head. Mind you, before this i had IBS for years. I always had to know where the bathroom was and i almost always had to take peptobismol before i went out. When it did hit me, it was massive cramping, sweats, and "D" really bad. After that period of sickness, I was having "D" daily as well as vomiting several times a week. The cramping became normal and it got to the point where walking and such was a constant state of pain. My axiety shot up and i'd have panic attacks and hyperventialation. I have GERD as well and during that time it was out of control.

It was also during this time when i loaded down fully on gluteny things because i was afraid to eat much of anything else (my diet, i kid not, was lunch meat, whatever plain gluteny thing that was available, plain salad mix, some sort of canned fruit). I lost about 40lbs the first month of this mess. I'd go and eat something, and then it was not uncommon for it to come back up.

I constently went to the doctor ("its all in your head!" "Deal with it like an adult") and they more often than not didn't believe me. Finally i got to see a nurse practitioner who put me through the paces with a full body exam (something i hadn't had prior to all this mess). She decided to test me for an ulcer, to see if my appindix was working correctly, and the long shot....celiac disease. Can you guess which one came back positive? I'm not a normal case, i suppose, only my IGA TTG came back positive along with the genetic testing, the rest of it negative. But as far as i'm concerned, I have it.

Do you live on campus of your university? If so, it will make things difficult for ya as the eateries are massive places of crosscontamination.

We all come in different shapes and sizes, as such not everyone on this board has the same test results or symptoms. If it makes you feel better, go for it. Do be careful though, your boyfriend will have to brush his teeth before he sees ya :) (due to crosscontamination issues).

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While you're healing, try to avoid soy and oats--many people with celiac can't tolerate them. I'd like to echo all of the advice you've already been given.

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Celiac is often triggered by a physical or emotional trauma. I'd say your food poisoning episode definitely qualifies! Your symptoms sound like they could well be celiac. Yes, even the anxiety.

The good news is you have come to the right place. Start by reading the "Newbie 101" thread. It'll help you find all of the places gluten hides so you can avoid cross-contamination. Expect to go through gluten withdrawal, which will give you headaches, constant hunger, and emotional upset. It lasted about three weeks for me. Then I started really feeling better.

But be aware that this is a rollercoaster ride. You will feel better, then you will feel worse. It takes a long time to heal and while we are healing, all sorts of non-gluten foods can make us sick. Don't give up though! Eventually the good days will outnumber the bad.

You may also discover additional intolerances. I had to give up soy and corn and most fruits and vegetables. I am slowly adding some of them back now. It was a year before I discovered that I can now tolerate corn starch, and believe it or not, that has made my life and my diet SO much easier.

I think the best way to start is with simple whole foods. Meat, veggies, and fruit. Fresh is better. Organic is best. (I reacted to non-organic foods at first. Pesticides and artificial fertilizers.) Rice is good. Brown rice is better. Potatoes are good unless you have a problem with nightshades (potatoes, tomatoes, peppers and eggplant). Sweet potatoes are really good because they are full of nutrition.

You should take a good probiotic too, and some folks swear by digestive enzymes.

It sounds overwhelming, and it is at first. I think every one of us here has had at least one meltdown at the grocery store. But it gets easier over time and eventually it becomes so normal you don't even think about it. The only time I think about it is when I get asked to eat at a restaurant. I mostly DON'T eat out actually, but I don't mind eating before I go and joining my friends for a beverage while they eat.

You will probably gewt lots of questions from your friends at first, but just tell them you have been diagnosed with celiac disease. That is not a lie - you are SELF-diagnosed.

I guess I'm getting ahead of myself a little bit - you are trying a gluten-free diet to see if it helps. If it DOES, THEN you can say you have been diagnosed.

ALWAYS have some gluten-free food in your purse. Some fruit, some gluten-free crackers, Lara bars, something. That way you will never find yourself hungry with no place to get safe food.

Now, read as much as you can here. Check out the "Leaky gut and other intolerances" section. Check out the "Pre-diagnosis and testing" section. Definitely the "Coping with" section. And all of the what's for dinner and what's for breakfast threads.

And then ask lots of questions. We don't mind if the questions have been asked here before. And remember, there is no such thing as a stupid question. We love to help. :)

I definitely feel welcomed :) I thought about adding a probiotic as well. I did that way back when this first started and they helped. It's nice to know there are others who have been through similar issues. I think I can spend all day reading all the info these forums have.

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You just discribed me before i went gluten free. Mine started badly after i had a nasty case of the flu (missed a full week of college classes, no fun), an allergic reaction a week later, and finally my gallbladder starting to go on me. I think its the combo of these three things that Celiac decided to rear its little head. Mind you, before this i had IBS for years. I always had to know where the bathroom was and i almost always had to take peptobismol before i went out. When it did hit me, it was massive cramping, sweats, and "D" really bad. After that period of sickness, I was having "D" daily as well as vomiting several times a week. The cramping became normal and it got to the point where walking and such was a constant state of pain. My axiety shot up and i'd have panic attacks and hyperventialation. I have GERD as well and during that time it was out of control.

It was also during this time when i loaded down fully on gluteny things because i was afraid to eat much of anything else (my diet, i kid not, was lunch meat, whatever plain gluteny thing that was available, plain salad mix, some sort of canned fruit). I lost about 40lbs the first month of this mess. I'd go and eat something, and then it was not uncommon for it to come back up.

I constently went to the doctor ("its all in your head!" "Deal with it like an adult") and they more often than not didn't believe me. Finally i got to see a nurse practitioner who put me through the paces with a full body exam (something i hadn't had prior to all this mess). She decided to test me for an ulcer, to see if my appindix was working correctly, and the long shot....celiac disease. Can you guess which one came back positive? I'm not a normal case, i suppose, only my IGA TTG came back positive along with the genetic testing, the rest of it negative. But as far as i'm concerned, I have it.

Do you live on campus of your university? If so, it will make things difficult for ya as the eateries are massive places of crosscontamination.

We all come in different shapes and sizes, as such not everyone on this board has the same test results or symptoms. If it makes you feel better, go for it. Do be careful though, your boyfriend will have to brush his teeth before he sees ya :) (due to crosscontamination issues).

Yes, I was diagnosed with IBS after I had the colonoscopy. I wanted to cry when the physician told me I was completely fine. This is the exact reason I haven't focused too much on getting insurance, I saw 2 specialists and recieved no answers. I was tired of feeling like no one took me seriously. I actually had a Dr. that told me I probably just had bad gas and wrote my a prescription for the children's dose of an acid reducer. A bubblegum flavored tablet that disolved in my mouth.

Anywho, I use to keep a Pepto bottle by my pillow at night although it didn't do much to calm my symptoms. I did not even think to consider my boyfriend and cross contamination! OoOo no , lol.

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While you're healing, try to avoid soy and oats--many people with celiac can't tolerate them. I'd like to echo all of the advice you've already been given.

Thanks for the tip, I regularly order soy at Starbucks to add a rich flavor.

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Welcome Rae!

Many here are self diagnosed and feel quite comfortable with that. If you choose to forgo testing, start simple. Meats, seafood, rice, veggies, potatoes and fresh fruit. No need for processed foods at the moment, or keep them to a minimum.

I would be as strict as possible for over a month or so. If you have a possitive dietary response, you can conclude you have Celiac Disease or some level of a gluten sensitivity. Both are rx'd by a gluten free diet. Some find relief immediately, others take longer. I would concentrate on removing gluten for now. And if you don't feel better, you may look into other foods as a problem. But, do take one step at a time.

As a college student, there is no need to deprive youself...there are several adult beverages available :rolleyes:

Take a walk around here. It's a great place for information and support. :) Once you get use to what you can eat, you will find that your sacrifices are only small ones. I do not feel deprived.

Yes, adult beverages were a concern of mine :)

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welcome to the group! I'm on my way out the door soon but just wanted to add -- remember to watch for hidden gluten in malt products, soy sauce, beer. And most of all become a label reader.....& many of us become intolerant of other things/foods as well.....I try to avoid all of the eight major allergrens........

The bad news it takes time to learn all there is to know about the gluten free lifestyle, mishaps will happen.... Good news is we now have great gluten-free choices so no need now to feel deprived of your favs...

You will find a wealth of info here......

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http://www.celiac.co...ages/Page1.html

Some suggestions that are safe. Wine is a safe option. But watch out for your tolerance, it will change. Go slow. ;)

Tolerance can change? Thats interesting, I wonder if it will. I haven't drank any wine or liquor since starting my gfd. I drink moderately but have always seemed to have an unusually high tolerance. Could that possibly have anything to do with this? I suppose I'll find out

welcome to the group! I'm on my way out the door soon but just wanted to add -- remember to watch for hidden gluten in malt products, soy sauce, beer. And most of all become a label reader.....& many of us become intolerant of other things/foods as well.....I try to avoid all of the eight major allergrens........

The bad news it takes time to learn all there is to know about the gluten free lifestyle, mishaps will happen.... Good news is we now have great gluten-free choices so no need now to feel deprived of your favs...

You will find a wealth of info here......

I was craving a choco malt earlier too! I checked online first and was disappointed to learn I couldn't have one. boo :/

http://www.celiac.co...ages/Page1.html

Some suggestions that are safe. Wine is a safe option. But watch out for your tolerance, it will change. Go slow. ;)

Tolerance can change? How interesting. I've always had an unusually high tolerance for being a small woman. I wonder if that has anything to do with this. I suppose I'll find out.

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    • Certainly seems likely if those levels dropped due to gluten removal. I am just curious, when you had the scope eventually, were you eating it?  Are you feeling any better? 
    • 1. Double checked your antibodies? 2. Those of us with celiac have issues with some nutrients for various reasons, being either we can not absorb enough of them from our foods due to damage to intestines or the new gluten-free foods you changed to are non fortified and do not contain the nutrients you which is especially true if you eat a bunch of processed gluten-free foods. A combination of both of these can lead to extreme fatigues. I found taking Magnesium, and B-Vtitamin supplementation helps (Liquid Health Stress & Energy along with Neurological support same company, Liquid version is easy to absorb and no pills). Look into KAL Nutritional Yeast also, I use it to make condiment cheese sauces, toppings, blend it with egg whites. it contains many nutrients we are lacking and is a great supplement/food to have in your diet. 3, Look into what cycling lady mentioned, this could also be a issues. 4. Had your blood sugar checked?
    • I'm going to play Captain NCGS to Posterboy's Professor Pellagra (No doubt the Marvel and DC Cinematic Universes will soon be bidding for our services) and say that regardless of the blood test results, this: is exhibit one. You have a reaction to the gluten free diet. That doesn't necessarily eliminate fodmaps or issues with other components of wheat, but it's at least suggestive and the main reason I think you need to get back on it and give it a longer go. In fact, as I hinted at in the previous post, I'd be doing my 'goodbye gluten' top 10 croissant and bagel bucket list because I don't think you should go back to it simply based on exhibit one. It's messing with you in a way that it shouldn't. I had sciatic back pain for 20 years which I attributed to a disk injury. It was left sided and when bad travelled down my left leg following the sciatic nerve. I had all the scans, treatments, exercises etc. Nothing really worked and it was at times intensely debilitating.  Drum roll... Gluten free diet cured it. My new theory is that gluten related inflammation was localised in that area and it caused the pressure on the nerve. Now why there and not elsewhere? No idea, but it could be inflammation causing your pain? I went for several diabetes tests because I would suddenly become very weak, hungry and I would feel unwell. Weak, hot, light headed, on the verge of passing out. The tests were normal but I knew that I seemingly had a blood sugar issue. Another win for the gluten-free diet.  It sorted the tremors in my hand (begone thoughts of early onset parkinsons or ms) and the nerve twitching under my eye and etc etc. well you get the point. I've said above I sometimes wonder if I'm undiagnosed celiac but there are certain aspects of NCGS which seem to fit me and maybe you too. My digestion stomach etc is much better now but I wouldn't have said before all this that it was particularly bad. I read this http://www.bmj.com/content/345/bmj.e7982 and I have a similar experience that neuro symptoms were more apparent than digestive in the 'classic celiac' model. (more of that sort of thing here though I already sent you the Umberto Volta I think. I would be fascinated if you, your brother and myself were to do the gluten challenge and then take this test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 what the result would be. But you know what, unless the scientists put out a call for more volunteers I won't be doing it. In the search for answers, validation, certainty, it's easy to forget the real goal, feeling better. After several years on the gluten-free diet I feel better. I'm no longer thinking that the next bout of chest pain will be my last minutes on earth. I no longer worry about going blind because half my vision has gone grey, I'm not trembling, I don't have cardiac arrythmia, I don't have rheumatic pain, I don't have crippling back ache like I'm 40 years older, I don't get  faint, dizzy and heart pounding when I stand up,  I don't have brain fog, anxiety, depression (well sometimes!), painful stomach cramps, weird white tongue, rashes on my torso, horrible greasy skin on face, horrible dry peeling scalp, sores on my scalp and neck, white spots on my fingernails, I'm not sweating so much I have to douse myself in antiperspirant, I don't have all this and more and I don't have a letter from a doctor saying I have celiac and I don't give a **** about it. I don't have gluten and as the Godfather of soul would say...  I feel good  Feel good IT. You've done as much as anyone could to find an answer. Maybe there's one around the corner or maybe there'll be one in 5 or 10 years when the likes of Marios Hadjivassiliou, Umberto Volta or Alessio Fassano have completed their research. Or maybe not or never. It's in the 'nice to have' than the essential's for me now. Do the diet, note your symptoms, stay connected with your doctor so that if there is anything that sticks around suggestive of other things you're on top of it, but feel good and focus on that and enjoying life.  All the best!    
    • I think he's right. It's a hard burden at times at any age but there will be particular challenges for your daughter as kids don't want to stick out or have to be continually monitoring things like their food. Check out this advert from a UK retailer. Beware it's so sugary it could probably give a diabetic person a sugar crash! Maybe you could do similar? Just get or make a selection of kid friendly foods but don't say anything about it to your daughter, just everyone go in and start filling their plates.  If she asks you if you've done anything for her you just tell her that she can eat everything on the table. At least this would show both that choice is still available to her and that because everyone is eating the same thing that she won't feel like she's being singled out?  
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