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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 To The Board And Waiting
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11 posts in this topic

Well, I convinced my doctor that it was probably a good idea to run the Celiac Panel on me and my blood is on its way to the lab as of Monday, now the waiting begins.

Celiac Disease runs in my family, although until 2 weeks ago I didn't have a name for it. I can remember 30 years ago, hearing that "Grandma can't eat wheat, Grandma is bringing her special rolls with her, wow its hard to figure out something she can eat." Never heard why it was she couldn't eat wheat, just knew that my mother was frustrated with all the things she couldn't use to cook for my grandmother, and remember hearing aunts and uncles say they thought it was all in her head. Now my Grandmother is gone, and I'm in the midst of helping plan my parent's 50th wedding anniversary. Lo and behold, my dad's brother has listed "gluten-free" as a dietary restriction on his RSVP card. Since I'm helping with menu planning for the weekend, I turned to the web to learn what the heck gluten-free means. :blink: Wow.....gluten-free = can't eat wheat, just like Grandma, hmmm....let's look at this a little closer. I asked family members some questions and it seems my uncle was diagnosed because of DH.

You see, for the last 8 months, I've been bouncing between my family doc, a GI, and a OB/GYN to figure out what the heck is causing me to have severe diarrhea. The Gastro doc says "Colonoscopy came out just fine, must be your hormones, you're getting close to the change, or else its IBS, live with it."

The OB/GYN said, "Gastro doc should be fired for not taking a keener interest, yes hormones could influence it, but the Gastro doc should be all over a intestinal upset, shoving it off to the OB/GYN is like the OB/GYN saying let's call in a Neurosurgeon for your C-Section." In the meantime, the diarrhea continues and keeps me home from work a lot more than I'm happy with, but I can't be more than 10 feet from the bathroom.

Then about 3 months ago, the diarrhea seemed to clear up all on its own, gradually. When I put this together, with the recent stumble over family health history, and the Celiac websites....it all started to become clear. You see, about 3 months ago, my husband went on a drastic diet, and our pizza orders ceased, our trips to the fast food places stopped, and basically my consumption of wheat was cut drastically by accident. So then it was time to test the theory. I made a specific effort to have wheat of some sort with every meal for 5 days. Over that time, the diarrhea began to return and by the end of 5 days it was back in full explosive force.

So I took a printed copy of some Celiac web pages with me, and went off to the doctor's office with information and family history in hand. It didn't take long, and my family doc was pouring over the web page information and agreed that I should have the blood test done. He congratulated me, saying it is a very difficult diagnosis to make. Then he went to research what the code was for the Celiac Panel and my blood test was begun on its journey.

This is probably more than any of you wanted to read from a newbie, but I already feel like I'm on pins and needles or riding an emotional roller coaster. I'm just hoping to have the results back before the anniversary event in July. Because that weekend about 90% of my living relatives are all going to be gathered in one place.

Oops guess this should have been a reply, not a new thread. Can an administrator help and move this where it ought to be?

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its ok where it is.....

welcome!

I am still trying to get the docs to give me a positive diagnosis, but make sure you had gluten in your system BEFORE the bloodwork or it will come up negative or uncertain!

Good luck

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Hi and welcome to the boards :D !!!!

WOW, you do have a long family history and your story sounded a lot like mine. I do hope you get some answers soon, just don't get discouraged if your blood work comes back negative. As you will read all over this message board you will see story after story of people going to multiple docs and going through all sorts of test only to all come back negative and to be told they have IBS. A lot of us here ordered a stool panel test from Enterolab . This test was designed by Dr. Fine which has Celiac too, it is more sensitive than blood and a more accurate way of testing. Or if you wanted to try the diet for a couple of months and if you saw an improvment (as you did before) I would say that you cannot tolerate gluten and that is a test in itself and "some" doctors will accept that as a diagnosis.

So you hang in there, you will get some answers soon! Take care and Good luck to you!

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No matter what your official results you already have your answer -- you have celiac disease.

richard

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I had not gone gluten free prior to the blood test. I had had a significant drop in the amount of gluten I was eating, because of cutting the fast food and pizza out of our routine for my husband's weight loss diet, which meant I was fixing more salads, veggie casseroles, and the like. There had not been a conscious effort to go gluten free, and in fact as I look at the ingredients in the meals I have been eating, wheat has continued to be listed as an ingredient in just about everything. What changed significantly was I stopped having pizza twice a week, hamburger buns, subs from Subway, and to keep sweets out of the house I wasn't making cookies and cakes (to help hubby resist temptation), so the wheat consumption dropped significantly without actually going gluten free.

Over that 3 months the diarrhea I had been experiencing gradually lessened and nearly disappeared, but I was a long ways from being gluten free. To test the theory about the diarrhea being caused by gluten, I started adding toast, doughnuts, sandwiches, or a slice of bread and butter, and some wheat pasta with each meal, thereby purposely raising the gluten content of my diet.

I agree, I think the blood test and the eventual endoscopy are formalities, I'm 99.9% sure I have celiac disease. That doesn't make it any easier to come to grips with this. I have had more emotional meltdowns in the last few days than I can remember for a very long time.

Hubby is being supportive and I love him dearly, but we're both feeling a bit lost about where to start. It's been recommended that I stay on gluten until we finish with the tests and start learning about the gluten-free diet. So hubby tried to help, and while we were at the grocery store, he picked up packages of our kitchen standards (for favorite family recipes) and read the ingredients. It was so depressing, the longer we were in the grocery store, the longer my list of "can't haves" grew and I went into meltdown by the time we left the store.

The next night, hubby decided we should start smaller, so he started going through what we have in the pantry, and my list of "can't have" went up even more. Then he talked about needing to get rid of the toaster, cuz we wouldn't be able to decon it from all the gluten-laden crumbs, and my favorite cutting board, and it piled higher. Then he added that he has decided that since there are just the 2 of us in the house, it makes sense that we will both go gluten free....and I fell apart again.

He tried to help with "it could be worse"....and I know it could be worse, but right now, it seems like the worst news I've faced. Right now I'm having trouble putting a positive spin on it. I've always been "the good cook" in our extended families, my mother-in-law loves that I have learned how to make all the family's traditional specialties (they all contain loads of wheat) instead of being afraid of the kitchen. Now I find myself, at 48, unsure of how to feed myself, and clueless on how to cook with these wheatless flours. It just seems like such a monumental task.

I know its an elephant, and the way to eat an elephant is one bite at a time. But I don't know where to take the first bite. And this emotional roller coaster isn't helping me to think clearly.

Hopefully, I can lean on the pros out there while I re-learn my way around the kitchen.

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First off, you're not alone in getting emotional from Celiac....whenever I have cramping/vomiting symptoms I get REALLY emotional....you know, the: "why me?" feelings. During the school year, I was seeing a counselor there. We talked about celiac disease (he has no clue, but tried to help....). However, he is going to be my teacher next year for Advanced French, and it's difficult to talk about anxiety and emotional issues with a teacher....if he were just a counselor it'd be different, but I feel like I'm keeping my tongue in check when I talk to him....and the idea of seeing someone is to open up. Because of my anxiety and emotional issues, my doctor suggested I talk to someone over the summer....he realizes that you can't really talk to someone at school about issues so personal: he feels that school should be kept separate from something like this....anyway, the point of all this: I understand what you mean about being emotional (I am still really emotional whenever I try to tell anybody what I'm feeling....). In addition, I can understand how you'd be overwhelmed beginning the diet....it's just about taking all this one step at a time....after being blood-test diagnosed, I ate gluten for awhile since I had the endoscopy after.....this is a good chance for you to learn everything you can about the diet: seize this opportunity and it'll be so much easier when you officially start, however, stay on gluten until after the scope.

Second, that is terriffic that your husband is so supportive that he'll go on the diet with you. The hardest thing would be to be alone in this...you need people to lean on when you feel emotional or upset.....it's really nice to have someone with you who is helpful.......you're lucky for that.....my mom is that kind of person for me....she helps me find good products, helps me deal with symptoms, emotions, and the like. It makes me so much stronger having someone to support me the way she does.

Third, don't expect to find much in pantries or grocery stores...whatever's fresh (vegetables, fruits, meats), you can have, most sodas you can have, you can have a select few big-name cereals, and most FritoLays chips:

FritoLays Gluten-Free Products:

Last updated August 28, 2003

BAKED DORITOS

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tyki, by already being comfortable in the kitchen, you're a step ahead of the game. go to the produce department in your grocery store and look around... there's a lot of food there, and - aside from the package/processed stuff they try to push on you - you can have all of it. go to the meat counter and look around... there's a lot of food there, and - aside from the packaged/processed stuff they try to push on you - you can have all of it. (I'm assuming you go to a grocer that doesn't adulterate the food... that sort of thing really ticks me off, as has since well before I was gluten-free.) and the aisles with the rice and beans - all good, again - aside from the packaged/processed stuff they try to push on you.

see a trend in my paragraph?! ;-) it's the packaged/processed crap (and yeah, I know, I'm a food snob here... I can't help it! it's in my veins! ;-) ) that can get you, but all the rest of the natural foods - the same stuff from which you can make your own (better tasting) version of the packaged stuff.

as for the baking, remember that it took you time - at some point - to get the hang of baking in a wheat filled kitchen; it'll take the time to get the hang of baking in a gluten-free kitchen. while I don't bother with yeast breads very much (time wise, I'm too lazy for them), quick breads and muffins - once you get the idea of the chemistry behind it all - really haven't been a problem for me.

there are going to be things you can't have, can't find a great substitution for, or won't want to deal with the extra hassle of making. but because of that, you have an opportunity to find new things you can't have, that you wouldn't have tried any other way, that no one else knows about.

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Well, its been two weeks, almost to the day. I had a voice mail from the docs office yesterday and I called in this morning. The blood test results are back and they were negative. :(

Well, now that was 2 weeks of waiting to be no further along. Of course from reading things on the web, I understand that really all that tells me is that there wasn't serious damage to the intestines at this time.

Now its time to decide if I go ahead with the Enterolab test, or just go undiagnosed and dive into being gluten-free.

I did venture into some gluten-free baking the other night. Made up a batch of cornbread muffins with the Gluten Free Pantry Cornbread Mix. They came out pretty good. :D

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I would go gluten-free and if you don't get any better that is when you start to worry.

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Waiting on biopsy results for my daughter -- thinking we will end up trying gluten-free diet regardless because I see such a correlation between diarrhea and increased wheat-pasta, pizza,pancakes in her diet.

Initially, I was told to go gluten-free immediately prior to the biopsy so I did some research and experimenting as you have.

If you are going gluten-free, get the CSA Gluten Free Product Listing. Visit their website www.csaceliacs.org Celiac Sprue Association. The book will help take some of the work out of determining mainstream products that are gluten-free. Also, it gives a flour mix that can be substituted. I used the ratio given of Rice flour, potato starch, corn starch and soy flour for flour in a traditional scratch recipe for corn bread. If we go gluten-free, I will probably mix it up in bulk, then be able to scoop out a cup of baking mix.

Quick and good but expensive - Bob's Red Mill gluten-free Brownie Mix and I found it in my regular grocery.

Good Luck.

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Hi Tyki: Here's an idea to help you decide whether to go gluten-free ASAP or wait while you do Enterolab tests: DO BOTH. :D You don't have to be gluten-free to have Enterolab tests show gluten antibodies, the celiac gene, malabsorption tissue damage. I'm not sure whether you've considered milk sensitivity (many celiacs have lactose intolerance and/or casein sensititivity), but even while using 'lactaid' to consume dairy, E-Lab tests will STILL show casein sensitivity.

I had been gluten-free for 8 weeks and using lactaid supplements for 10 years (and also using digestive enzymes and probiotics for over a year) when I did E-lab tests. They STILL showed gluten and casein antibodies, celiac gene, but no malabsorption. Dr. Fine said "Enzymes can keep malabsorption away, if you lack pancreatic enzymes" when I mentioned taking digestive enzymes before the test (AFTER receiving my results :( ). I kinda' wish I would have known before doing the test, but it really makes no difference. I STILL must avoid gluten and casein.

I assume you started the whole celiac disease testing process, because you had diarrhea symptoms. Then you discovered going gluten-free helped resolve that symptom. I can understand your desire to receive a definitive test result of celiac disease, so you don't have to wonder if something else may have caused your diarrhea. However, whether or not you decide to follow the gluten-free approach to resolve your symptoms or you wait for a doctor/lab to indicate you have celiac disease, the treatment is the same: GO gluten-free ASAP.

My initial celiac symptoms were so excruciatingly painful, I was desperate to do anything to just stop that pain. I realized my own doc had led me astray (for 8 years) with her 'IBS' diagnosis which hurt (with recommendations to eat more wheat bran and whole wheat products) rather than helped me. So I initially didn't care about 'diagnosis'--I just wanted to stop that terrrible pain. When going gluten-free reduced the painful symptoms, I could think more clearly and wanted to at least talk to a doctor. So I saw a naturopath, but he discounted the value of the tests saying the blood test only works (true positive results) when celiac disease is so far gone that gluten antibodies leak from the gut into the blood and the biopsies only work when the biopsy sample actually got a damaged section of the intestines which have to be pretty far gone to have flattened villi EVERYWHERE. He just told me to just keep following the gluten-free diet and then look out for other possible allergens. :o

However, everytime I 'slipped' and got recurrent painful symptoms, I wondered if I might have something else (instead of celiac disease). Those fears made me request Enterolab tests. After taking the complete test panel (with free milk sensitivity test thrown in) and sending off my specimums, my recurring symptoms (despite being 8 weeks gluten-free) made me wonder if I really did have milk sensitivity (even though I had used 'lactaid' a long time). I didn't realize I could also have caseine sensitivity when I started using lactaid. So I tried my own little milk sensitivity test by going dairy free 36 hours and then having 1/4 c of milk. My dramatic reaction (and symtoms which continued for over 4 days) convinced me I was also casein sensitive. When my E-lab results (gluten & casein antibodies, etc.) arrived a few days later, I was relieved, but not surprised. Now my symptoms are almost nonexistent and I'm feeling better every day. :D

So I would recommend you go gluten-free ASAP and send for E-lab tests (if you can afford them) immediately after that. Sorry this was so long, but I was trying to tell how I decided to use E-lab AND go gluten-free ASAP. ;)

BURDEE

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    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. 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If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
    • That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...
    • It will prolong your life....celiac is a autoimmune disease that  causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS.   I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
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