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
Grrr!! Perhaps we went to the same doc! Completely pisses me off. I'm having an attack right now so I can't type too much, but same thing happened to me and worse. Luckily I have a great GP who told me that ya that guy is a jerk, and he only took a few biopsies and it doesn't mean anything (my GI pushed a colonoscopy on me instead of the endoscopy I came in asking for, so he could make more money). I don't understand how they look at one or two things and then tell us we're not sick when we know we are sick! I was already gluten free for many months when I even went to my doctor to tell him this is what was going on, and there was no way I was going to start eating it again just to get tested.
Acid-reflux meds don't do anything. And mild erosion is common?? It's not meaningless, he's crazy. Like, it's common in people complaining of stomach issues I bet... cause they have a problem! Def don't listen to this guy, his ego is out of control. He thinks he knows everything and you can't possibly know anything about your own body because you did't go to school for it. Do what you know is right, regardless of what any tests say because those are updated and discovered all the time!
$#*@!! I just came back from a teeth cleaning 30mins ago and I didn't say anything to them Let's see what happens.
Although I did also kiss a guy on the lips, closed-mouth, after he drank beer last night but so far I'm okay from that. Can take a day or two for me though. I just realized the kissing thing after a year now, geez.
Maybe salad is an option, but besides that, I certainly do not feel safe ordering a gluten-free menu item in a mainly gluten restaurant. I get CC'ed from that all the time! Very frustrating, and I would think that's probably the OP's experience as well.
I recently was eating a kobe steak at a restaurant that I had explained my problem to and went to eat the vegetables that came on my plate with it... they were cooked with teriyaki! I mean, I only figured that out once I put the broccoli in my mouth of course. That was a $150 plate and they still glutened me, and blatantly! You can't trust restaurants.
But I agree there are so many other things to do with your boyfriend than sit around somewhere and eat food anyway
Probiotics can take a month or so to work. Stick with it. Sometimes eating anything is just going to hurt when you've been glutened
At this point, you're still getting a ton of cross contamination I'm sure. That's got to be a really tough diet to navigate in college. Do you share a kitchen with a non-GFer?
I've been getting glutened a lot lately too and it is so frustrating! Always cc from eating out at this point I'm pretty sure, I like to go to nice restaurants. What's your eating out situation like?
My favorite fail safe gluten-free comfort food is penne vodka. I use Bionature Organic gluten-free Penne and Emeril's alla Vodka sauce... both gluten-free and amazing! But you have to be sure you're cooking it in a clean kitchen or it's pointless.
I'm a big fan of smoothies as well. There's an awesome vegan organic "fastish food" place by me that makes the best thing when I can't put anything in my stomach but I'm about to pass out.... pear, banana, kale, almond butter, and soymilk. Tastes so yummy! And I'm not normally a kale person, so I love to get it in there.
I don't know if you meditate, but I know that helps me with my gluten attacks a lot. I feel like it settles my stomach slightly and strengthens my immune system, I focus on those things and envision myself healing.
I'm sure some of you have seen this before, but his vodka sauce is the best in a jar I've ever had, and made from actual whole food ingredients so I thought I would share again:
I'm about to eat his salsa now, that's why I finally just checked. Even though I've been eating his vodka sauce for months now with no problem, because there are no artificial ingredients. But to maybe have a great BBQ sauce and chicken stock and ceasar dressing would be great. Oh and honey mustard! Seems so exciting to have so many possibilities!
Has anyone else had this stuff?
I'm new to this board and everyone else's feelings on testing. But for me personally, I don't care about any test because I feel the effects so dramatically. I could have every test currently in the world tell me I was fine and I still wouldn't be completely gluten-free. It sounds like your sons symptoms are pretty serious for 4 years old. I wouldn't let this go any longer. I mean, not like life or death obviously, but just I know all the dental work I've gone through because of not catching this for a long time.
And it is a huge pain in the butt, esp for parents and children. But if he starts now, he also won't grow such a taste for all the delicious gluteny things of the world and know how much he's missing
I certainly don't see the harm in the diet. Then if you see that he's able to tolerate slight cross-contaminations or not, you can adjust accordingly. But it sounds like you probably need to be really strict about a gluten-free diet for the rest of your life
Many GI doctors don't like the diagnosis of Celiac. I'm not sure why, but I know I dealt with a real jerk who came in and said "good news! you're not sick!" after doing a colonoscopy on me (because he makes more money off of that, my bf knows him and warned me he would do that) when I came in asking for an endoscopy. Like oh good, so I guess the diarrhea 8x a day is nothing to worry about then, since according to you, I'm not sick, right? And when I told him I already had a great relief of symptoms since not eating gluten, he tells me I don't have a problem with it and am only making life hard for myself by having an unnecessary restrictive diet. So I asked him about my stomach pains and bathroom issues, and he tells me I have IBS (It's BullShit) and tries to prescribe me Prevacid for the 800th time in my life. I then ask him about my chronic fatigue... he says it's not related!! Right.
So I feel you with your experience with your GI and def believe that we each know our bodies best. If you feel a positive difference, then continue it! My bf owns a blood work lab so I was constantly testing myself for everything and he tells me about new tests that come out all the time, so things are constantly changing. And with the lack of funding that research for Celiac disease gets because of it's lack of drug treatment, the testing still has a long way to go to being fully comprehensive like AIDS or pregnancy, which can still both present false results too.
I fully believe you'll continue to see improvements in your health if you are serious about going gluten-free, but it does take time. It's worth it. Good luck!
Yes, what Raven said. Def could have been cross-contamination if you have a non-gluten free person using the kitchen too. I actually have this in my freezer though and have not tried them yet, would like to see if anyone has eaten it and been okay. There are gluten test kits and I've heard of people getting positive results on something supposedly gluten free, so I wouldn't be totally surprised. But those things are pretty expensive.
So did it taste good at all even though?
If so, I might be a guinea pig.
Hello, my name is Lauren and I actually live over in Hoboken, NJ, but work and play in Manhattan. I'm 28 and was self-diagnosed and them confirm one year ago. I've had Celiac since I was 17 and I missed 55 days of school my senior year from just being too tired to get up. I had a really tough next 10 years. I kept trying everything to figure out what was wrong with me and wouldn't give up. Everyone else said I was crazy, I was just depressed, I was a hypochondriac, I'm fine, etc., including many doctors. By the last few years I was having bathroom issues about 8 times a day and could barely eat. But apparently that's IBS and I'm supposed to live with? It wasn't possible.
2 summers ago I went to my doctor in tears because I could not get out of bed at all. It was such a struggle to get to the doctors. I told him I seriously cannot go on like this. He said okay, so I might as well give you everything. He put me on testosterone cream, cortisol, and a supplement called Travacor, which contains 5-HTP. These helped enough to get me moving somewhat, and in April I had enough energy to plan a trip to Kripalu (a yoga retreat center) for a week long workshop on nutrition and cooking. I had been trying to eat healthier for a while, but of course that included lots of whole grains. I was worried about sharing a bathroom at the retreat space, but I decided it was too important and I just had to deal.
While there, I learned about Celiac. I had heard of gluten-free and stuff before, but decided I didn't want to be one of those people, lol. Well once I really learned about it I was like holy shit! This is it!!
I had always described my pain and difficulty in eating with "it feels like I have a sunburn inside my stomach" and once I saw a picture of a Celiac small intestine, I knew why! Everything was explained, the 8 billion cavities I've had, the severe acne, the diarrhea immediately after eating, even the odd result on a liver test that prompted a doctor to call for a liver biopsy.
So that's my story before knowing. Well, obviously some other crappy things happened as a result of being sick too, but figured it was long enough. Now that I've known, I am SO happy, all the time! I just can't even get that upset about anything, as long as I don't feel how I did before. I mean, I've only known for a year, and I've made a lot of mistakes like anyone else, but even when I get glutened at least I know what it is and that IT WILL GO AWAY!!
Now I just want to work on my health, and help others. I'm applying to go back to school full-time for nutrition in the fall, after I get my two A's in the classes I took this semester on Friday The things I'm doing these days are blowing my mind, I never thought I'd be able to. Like going to Bali for the month of August to finally get certified in yoga. I've been doing yoga since I was 18, and it's really the thread that held me together all those years. I was always too afraid to make the commitment to go to yoga school before though, because I knew one day I'd be too tired to make it, and would disappoint everyone and myself again. Now I KNOW I can do it!
Alright well thanks for reading this all, much love <3
I know how frustrating this is. That we have a disease, and yet it's still not treated as a real disease many times, even by us! We try to downplay what we are going through because we're used to doing it before we knew and people would say we're just depressed and/or being a hypochondriac.
There are definitely a lot of changes I would suggest making after finals, but right now you only have 6 days to get through this and that's the pressing issue. First I would immediately go to your doctor. If you can't stay awake, you can't stay awake and it's a problem that there are drugs out there for a short term solution. I don't know what your situation is with your doctor at school or home though. I fully understand that you feel like you can't go to your professors at this point, I would feel the same way. I had a problem with that too.
At the very least I'd say cut back on the Ativan and drink lots of Red Bull for the next 6 days. But don't go crazy! It's only one semester. And you haven't known long at all! It takes time and we have to be easy with ourselves. I can't believe other Celiacs are saying you're making too big a deal about your symptoms, that are supposed to be your friends! I know you're not. Even if you do fail, you can get help from the school to have it not count or something. I failed a lot of classes because of Celiac when I didn't know I had it, a lot. And I'm really smart, so I know how devastating that is. But now I finally know about it at 28, I am ready to go back to school for nutrition, yay! I'm the happiest I've ever been or could really imagine, so I know it gets better.
Then after finals come back on here, and we'll help get you all set up and healthy and happy for the fall!