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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Hey all... I've been gluten-free for a year and 2 months now. I just wanted to add to this thread that I've been feeling EXACTLY the same in regards to the dizziness and lightheadedness... I went to my doctor today who gave me some medicine for it, as well as something for acid build up ( which might be causing the pain in my stomach that I still have). He is also sending me to a specialist of internal medicine. Hopefully if I find something out that's helpful, I will let you know. The dizziness and lightheadedness makes me feel sooo nauseated as well. It's the worst in the mornings but is there all day. It's not just when I get up fast either... it's constant. Hope you're all doing ok.
Hey there! I'm having the same problem.... I have to burp A LOT... and I used to barely ever have to burp before celiac... I haven't had the courage to cut out dairy yet.... but im taking a lactaid pill with my dairy... its not helping that much though. Any suggestions?
Hey Delta... man, that's harsh. Sorry to hear your girlfriend did that to you... but I can tell you for sure, anyone who does something like that to anyone... making you sick intentionally in order to cheat on you... that's LOWER THAN LOW!
ANYONE like that is not worth your time of day.
I know what you mean about getting down, and I come on the board to vent too because not a lot of people w/o celiac really understand. Anyways, just wanted to give you a word of encouragement. Hang in there, vent whenever you have to, and just keep on doing your best. I know what its like. I'm 20 and so around your age, so I do know the challenges. Good luck and I hope things get better for you.
Thanks Jen! Your words are encouraging! As for the bone density issue, I had bone density tests done and they showed very thin bones, at the level that indicates Osteoporosis... My family doctor told me I have Osteoporosis, and he recommended me to an Endocrinologist to see if I should take special medicine or just supplements ( an endocrinologist is a specialist who acts kind of like a consultant, he/she collects all the reports and tests done for you and examines them as a whole to determine what to do)... My endocrin. decided that we shouldn't exactly call it Osteoporosis because he believes the very low bone density is a direct result of the celiac disease, and that within a couple of years, using daily calcium and vitamin D supplements, I should be back to almost the normal level. So that's the story with that.
Thanks to everyone for all of the replies! It'll be 5 months of being gluten-free for me in a couple of weeks. It's been quite the challenge and everyday I learn something new, and everyday I have to find ways to deal. As for Communion, what I do now is if I haven't had a gluten accident for a bit ( like a few weeks ), then I'll take only the Blood at Communion... basically I'll risk it once in a while. But if earlier that week I had a gluten accident, then on the weekend, I won't have the Blood to kind of give my system a rest. I know that the Blood could be contaminated, but I always show symptoms when I have a gluten accident. I know some people don't but mine are VERY obvious.... so believe it or not, knock on wood, I haven't gotten sick from taking the Blood yet. It's just a risk I'm willing to take, and I've been lucky so far that I haven't gotten sick from the Blood. I'm sure lots of people may disagree, but I think we all need to make a decision about what to do in these circumstances, especially if having a spiritual life is important to you. Good luck to everyone, and I hope you can all find a way to deal with the Communion issue.
( I really should change my signature... I guess I'm not THAT new anymore!!! )
Hey everyone! I have a question. I have celiac and I get a horrible pain in my abdomen a few inches above my navel whenever I eat something wrong. But I also get an unbelievable pain around that area when I sneeze. I don't have a cold or anything, so I know it has nothing to do with being a cold symptom. Does anyone get this pain when sneezing? It really hurts. And does anyone know what causes it? Is it yet another thing caused by celiac or what? Thanks a lot.
Hi Nickra, welcome to the board. You know, I've been gluten free for almost 3
months, and I'm still trying to keep it a secret. Same reason like you... I'm not embarassed, I just don't think a lot of people understand what it's really like
unless they're going through it. The people who know are my immediate family and a couple of friends. That's it. And I'm doing my best to keep it that way, but
it's hard. Especially when they keep offering food and you keep turning it down and won't even have just a small bit. I sometimes just say, no thanks, I don't feel good after I eat bread and stuff like that. And that works most of the time. It's a challenge to keep it a secret, but do what you feel until you're ready to tell others.
Well, in the Orthodox church, the priest first puts the Bread/Body into the Wine/Blood cup. And he gives himself communion first, then he gives to the men. After that, he comes over to the women and gives them the Body (he places it in our mouthes... in the Orthodox church, nobody but the priest is permitted to hold the Body in their hands). Then he takes a sip of the wine for himself with the spoon (so at this point, the Body is in the Blood cup). Then he gives to the people and we use a communal spoon (the same way you use a communal cup)... So in our church, it's traditional to first place some of the Body into the Blood cup. The thing with the Orthodox church is that they stick to tradition very much... that's why they are the Orthodox church... they do things the very traditional way. Don't get me wrong, it isn't that they won't accomodate people... They agreed for me to just take the Blood, but once again there are issues of contamination... I will talk to my priest soon about it and see what he thinks. They're pretty good with helping people out and accomodating people who have some circumstances.
About how you said you didn't feel that sick in the beginning... I know what you're saying... But you'll find that the longer you stay off of gluten, then when you accidently ingest a little, you feel it a lot more! (I'm referring to people who did show some symptoms at least... even if they weren't too pronounced). I used to eat sandwiches on normal bread and feel not too good, like stomach pain and all... After I went gluten-free, if I have a crumb of bread, I spend about 2 days feeling really miserable ... a lot of stomach pain, dizzy, having to go to the bathroom a lot... so the effects seem to increase when you remove gluten from your body and then accidently have a small amount. People on the board have actually discussed this before and someone here said that it's as if our bodies are so happy to be rid of gluten that they feel it's like poison with even the smallest amount. I hope you find a solution to Communion and I'll let you know if I've found one.
You had asked why I wasn't on Fosamax... well, today I was reading the Oprah magazine online, and it said that Fosamax is only effective for post-menopausal women... So maybe that's why? Check it out...
quote: "That's my worst fear," says the NORA study's Siris. "A woman in her 30s or 40s finds out she has low bone density and her doctor puts her on expensive drugs she doesn't need. It's incorrect for a healthy premenopausal woman to be on Fosamax."
Welcome to the board . From my experience, my family doctor sent me to a GI who deals with all types of stomach problems... and she discovered the celiac. So I'm not sure if you want to go to a specialist who only deals with celiac disease... You probably won't find many who just deal with celiac disease... If the blood tests already confirmed the disease, I would expect your GI to detect damage to your instestine when he/she performs an endoscopy. In my case, my GI deals with lots of other problems as well, and she diagnosed the celiac right off the bat with much accuracy.
When you're first learning about what you can and can't have, it will feel like a lot of information... that's because it is. But you'll pick up more and more as you read. Also, these message boards are amazing. You'll find very helpful people who can give advice, and also, they're hear to simply listen when you need to vent.
Cross contamination, as basically everyone on this board will tell you, is a very important concern. When I was first diagnosed, I asked the same thing. But with time, and some accidents, I've learned that even a crumb does damage. And I'm not sure what you feel after you eat something with gluten, but even a crumb of bread makes me ill for days. Nonetheless, whether or not you feel sick, if you have celiac and eat something with gluten, damage to your instestine will occur. So don't mix utensils from jars and butter, etc. onto your gluten-free food after others have used it on their non gluten-free bread. Wipe up your counters and be on the lookout for any ways that gluten can get into your food... for example when baking non gluten-free food, watch out for flour in the air settling onto your food and your counters etc.
I'm pretty sure that 2 year olds can get tested for celiac. You may want to double check, but from what I've read on the boards, many people test their children.
Here is a helpful link to some gluten free foods... If you need anything, please feel free to ask. We're more than happy to help!
I have a quick question I'm really curious about. Say we have an accident and eat something with gluten in it. So after realizing we just had something with gluten and know that within a couple of hours we'll feel pain and start getting sick (well, that's what happens for me at least) ... can we just enjoy the rest of the day then? I guess I should use the term "enjoy" loosely. But what I mean is if I've slipped up and had something with gluten... can I just eat what I want that day since I've already messed it up and the damage is being done? Or does it cause SIGNIFICANTLY more damage? It's tempting after realizing I've eaten something with gluten to just go eat anything I want then for the remainder of that day since apparently I'm back at square one. If anyone has any input on this, I'm very curious to know. I'm sure a lot of people will say no, I shouldn't / can't.... but practically speaking... If I'm back at square one after ingesting gluten by accident, then why not just eat what I want that day anyways?
Once again, thanks a lot for all your help. You guys rock.
Well, the first thing I want to say is that you shouldn't feel silly about getting sad when you're shopping. That has happened to me a lot, and to many people on this board. There are times when I'll walk into the store and hold myself back from tears. It's a big adjustment. We've all gone through it... and sometimes we go shopping and we're ok with the whole situation, but another week we'll go and we'll feel so terrible over all the things we can't have that are jam packing the aisles and shelves. And I, just like you, have told myself that it could be worse, it could be cancer and of course what a person in that situation wouldn't give to be in our shoes. And sometimes that makes me feel better... and sometimes, even that doesn't cut it and I just feel bad. But what I'm getting at is that this diet and disease is a very big test of patience (And I'm not a patient person...), so don't feel guilty when you're in a bad mood. You have the right to be. We all do. We just have to keep at this I guess. As you can tell from the title of this post, when I wrote it, I was in a really down mood. And the last thing I wanted to hear was " it could be worse ".... because I already tell myself that a million times, and there are days when I just don't care if it could be worse. So don't feel guilty or silly when you get upset. We've all been through it and continue to go through it.
About Communion... To be fair, I haven't really asked them if I could replace the bread with my own. I'll consider doing that and hope it works out. Of course when someone is ill and can't partake of Communion, the priest brings it to him at his house or the hospital or whatever.
Mariann, I love this site too. It always helps me out when I'm feeling down or when I have a kazillion questions! You know, I was actually surprised when you mentioned the joint pain and the potatoes/tomatoes... I haven't really had a lot of tomatoes, but potatoes a fair bit! I would have never in my life guessed that potatoes could be causing the pain... boy celiac is a tricky thing isn't it? See, I've been wondering about this joint pain but I never knew what brought it on. I just told myself "must be the osteoporosis... " I used to watch the osteoporosis commercials on tv and think to myself "I don't have to worry about that for a LONG time." I guess the joke was on me. Oh well. I read on the net that osteoporosis can't be cured... but my doctor also told me that he believes because I'm still young (20), I could replenish the bone loss (does that mean that I can be cured of osteoporosis?)
Well, I'll try to minimize my potato intake for a week and see how that goes. I find the reason I eat more is that I crave carbs so much now that I'm g.f. I also find that its one of the few things that are filling... That and rice. My rice intake has probably quadrupled since being gluten free.
Um, about being first in line for Communion to avoid the contamination... One more complication... The priest takes from the Blood before anyone else does... he has to be the first person to take it... and so the Body has to be in it. I wish it were simpler. But thank you very much for the suggestion...
It really touches me to see that people take the time to respond when someone is feeling down... I know for sure there will be more down days in the future... but knowing that this board is here is a big relief.
I've been gluten-free 2 months today and I'm feeling better energy-wise. I used to faint A LOT... but I'm on iron now as well as centrum ( a multi-vitamin ) and calcium with Vitamin D. It will take some time, but believe me, you'll start to feel different. My nails used to be soooooooooooo brittle and weak and wouldn't really grow that long. Now, I can't believe it... they are strong and are growing and look healthy. You'll see results in time. Keep it up and remember, taking that iron is very important!
I'd really like to say thank you to everyone who replied... You've all really made me feel better. I know that there isn't really a solution, but it just helps so much to talk about it with others...
About the Communion... the thing is, in my church, we do not use wafers. I'm Orthodox and we use a round bread... a church member bakes the bread the night before ( a lot of them ) and at the beginning of the mass, the priest chooses the most perfect one ( most round etc ) and he uses that one to pray on and we take Communion from that one. So it's not really a wafer that I can bring in... The other problem with just taking the Blood is that in the Orthodox church, the Body is DIPPED into the cup of Blood... and so it then has crumbs of the bread in it... I got permission from our Bishop to just take the Blood, but since the Body is dipped into it, I don't really see how that solves the problem. I guess I have to leave that up to God to solve because it's beyond me.
Libby... about the joint pain... the weird thing is that when I was meeting my gastro specialist, she asked me if I ever have joint pain. I said some lower back pain but probably because I'm sitting in lectures at university all day. And then, like a month later, I started getting really bad joint pain... and when I would simply WALK on the treadmill at a fairly slow speed, my knees would lock! I literally had to massage them to get them to unlock. It was the weirdest feeling...Some days are fine of course... not really much pain. Other days I have to lay down a lot with a heating bag because of the pain... I usually have the pain around my hips and knees and wrists... I hope your results turn out ok and I hope this helped.
Linda about the Fosamax. My meeting with the Endocrinologist in march is to determine what, if anything, they want to put me on. Right now I am taking calcium with vitamin D. I'm hoping that helps. So I'll see what they'll put me on in a couple of weeks.
Once again, thanks to everyone who replied. I guess I could try just taking the Blood, even though the Body was dipped into it... I know that God doesn't judge us on if we took Communion. It's just that I've taken Communion since I was a child and it's a regular part of my life... I just feel weird when I don't have it. Do you guys think the Blood would be contaminated if the bread was dipped into it.... Like if I took a sip of the blood that didn't have any visible crumbs in it... would that be contaminated nonetheless? ( and I can't really ensure it won't have a crumb in that sip until it's in my mouth... and of course when it's in my mouth I must swallow it no matter what because I believe it's the Blood ...)
Take care everyone... I will probably have other down days where I'll post again and basically sulk for a bit.... but it helps so much with you all here to listen and help. God bless.
As Tammy said, being gluten free isn't easy. We all struggle and feel down about it and you'll have days where you feel like that too. But the reality of it is we can't change the facts. But you know what? I'm sure you can do this. Below is a link to a list of gluten free products... I hope you find it helpful... it has helped me out a fair bit. These message boards are a great resource because you'll find a lot of people on here who are going through the same things as you. Also, there is a teen section that may be helpful for you since you're 13. I'm 20 and being g.f. is tough on me, so I know there will be tough days for you as well. But I'm SURE you'll be able to do this! Try your best and good luck to you. Here's the link: