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
I live in an apartment and share an oven with a gluten-eating roommate. We honestly haven't used it that much since I've been gluten-free (or at all) but we're planning on using it a lot more for gluten-free meals. It isn't a self-cleaning oven so I plan to scrub it down as best I can but still not put foods directly on the rack. Do I also need to put a cover over the food?
Thanks, I had read what they said about Enterolabs/Cyrex, and that is what made me worried. I guess I will give it more time, see if I see any improvement after a long period of time (at least 6 months) and pay attention to whether or not I ever experience "glutening" symptoms.
I think I've had all the proper testing done, like I said, I've had a biopsy and what I assume to be the standard bloodwork around 4-5 times.
I left out some info from my original post but didn't get a chance to edit it.
When I first developed GI symptoms back in 2009, I had the celiac panel done probably at least once (I have now had it done probably five times ). I had an endoscopy not specifically for celiac, that is when I got diagnosed with GERD. My gastroenterologist did a biopsy for celiac which was negative, although apparently I had flattened mucosa that made him suspicous. I get my thyroid tested pretty often because of my history. I have always had good results and even see an endocrinologist occasionally. I agree that it is probably hormonal for a lot of it.
I have been on every type of birth control imaginable: minipill, low dose, normal oral contraceptive, the ring, Mirena, you name it, I've tried it. All of them have horrific side effects for me, I simply cannot tolerate birth control. It is not an option. Instead I have had the two surgeries (one from a top surgeon in Atlanta) which helped a bit with the pain, and I take other medication like Zofran during my actual period and just lay low...
Hello everyone, I hope you'll bear with me because this may be a long post. Feel free to skim, I just want to make sure I provide enough information.
I have had health problems since I was around 16 (I am now 21). I first started off with gastrointestinal symptoms, chronic nausea and heartburn/indigestion. I also have what they like to call IBS---my bowels alternate between constipation and diarrhea but are never truly "normal" although there is a "normal" for me. My heartburn is pretty well controlled by Nexium now. I also developed hyperthyroidism around this time, but that was deemed to be transient and I have not had any problems since. When I got to college, my health got a bit crazy. I got diagnosed with pernicious anemia (autoimmune B-12 deficiency), endometriosis, adenomyosis, and interstitial cystitis. I also have some form of tachycardia which is now controlled by a beta blocker. I also have had lifelong allergies, eczema, and bad acne since puberty that has not really let up.
Anyway, after my 2nd laparoscopy for endo within a year, my menstrual pain had decreased substantially but I was still having other pretty severe symptoms during my period, mainly horrific nausea, loss of appetite and severe fatigue. I went to see an acupuncturist because I had reached the point where I was desperate and willing to try anything... Anyway, my naturopath told me all about gluten intolerance, how I might have it and that would explain all the autoimmune issues blah blah blah. He convinced me to order Cyrex labs, and the results came back that I am "gluten intolerant". I gave up gluten a little over a month ago, and am careful to avoid cross-contamination, do everything I can.
I haven't seen an improvement, but I realize this could take time. So I didn't really think anything of it. But now I'm reading a lot that Cyrex labs is probably scammish. So, do I have gluten intolerance or not? Feel free to ask any questions... I am very confused and don't know what to do.
Thanks everyone for your responses, it looks like it really runs the gamut. It looks like things get less chronic and more acute though. I'm sure I'll be back at some point to add how glutening compares for me.
I'm just wondering if people feel like their glutening symptoms are similar to those they experienced before they were diagnosed and ate gluten regularly. For example, if you had issues with DH before diagnosis, is that still your main symptom if you get glutened? I have been as gluten-free for a month (but may still be getting CC'd, I need bloodwork) and have NO idea what to expect from glutening. Before diagnosis I had no consistent symptoms except maybe stomach pain on occasion. It's pretty upsetting to think it could go from mild and bearable to severe and interfering!
Thanks everyone for the thorough responses That makes a lot of sense, I will probably keep a food diary just to see if any new sensitivities appear, but I probably will only be eating a gluten-free substitute or less a day. I definitely plan to eat a lot of Tinkyada since it's easy to make some pasta and I think it's pretty yummy (and so does my gluten roommate--she can't tell the difference). I'm also a big fan of Van's waffles since they are so easy to make. I may go easy on any snacks for a bit, or stick to normal gluten free ones (fruit, cheese, candy , etc).
Sorry to hear about your metabolism and complications from such a long period of going undiagnosed. I'm actually fairly significantly underweight, mainly from other illnesses :/ so putting on weight would definitely be a positive. I'm keeping my fingers crossed no other intolerances pop up, but I'm definitely going to keep my eye out.
So I've read a lot about how you should avoid gluten-free substitutes for awhile after you begin a gluten-free diet because your gut needs to heal up. My question is, if you are not a celiac, does this still apply? My impression is that celiacs have actual damage done to their gut, not sure if this is the case for people with NCGI? I realize a whole foods diet is the best idea but gluten-free substitutes are just so convenient for me and I'm still at college with a shared gluten kitchen (yes, I realize the situation is not ideal for CC, but I'm going to try to minimize it anyway). Any input would be appreciated.
I'm so sorry you had unrelenting nausea, I can completely relate, and honestly I prefer pain (no matter how severe) over horrific nausea which I too have suffered from pretty consistently. Between that, IBS (or what they decided to call it) and GERD as well as hopefully alleviating symptoms of other AI's and preventing more from springing up, I am excited to see what going gluten-free will do for me in the long-term.
Nope, never vomited from gluten (except with a stomach bug, but that was any kind of food :/) and just talked to my acupuncturist/natural doctor today and he seems pretty confident that I shouldn't react too strongly to any cc since I don't have a very strong reaction now. I don't consistently have any gastrointestinal symptoms with gluten, just occasional IBS and icky nausea (that's more due to other AI diseases though). I'm the same though, I get so nauseous any sane human being, including me sometimes, would give up and just vomit but I just seem to stay nauseous :/ Yes, I love ginger and even have Zofran which I love dearly It's amazing how much panic attacks are related to underlying medical issues isn't it? When I got my heart issue solved it was like night and day. I'm glad this should help even more.
Yep, I plan to go gluten-free in about a week, I need to stock up and clean up a bit (I'm in college, my kitchen needs help). I am savoring every last gluteny treat
It's always nice to find another emetophobe who truly gets it Sorry you have such problems. Hopefully it gets better as you are off gluten longer. Fingers crossed vomiting stays away from you, you'll probably be fine, emets tend to have strong stomachs. Good luck!
Also forgot to multi quote Celiac Mindwarp--- thanks for the info! I will definitely look out for that. My anxiety is pretty well-controlled now, but I'll always take improvement! I can relate to what you said a bit. Sometimes I will have a panic attack and later realize I somehow missed by beta blocker that morning.
I have a few friends with RA (since a very young age, most of them) and as far as I know none of them are celiacs, but we all know the diagnosis can be elusive. Anyway, there probably is a connection, there usually is because once you have one autoimmune disease (like RA), you tend to get other ones unfortunately. Some people think gluten and celiac may be responsible for increasing susceptibility to other autoimmune diseases but I'll let someone else talk about that. I'm sorry your daughter has RA I hope she is able to get some treatment despite her lack of insurance and find something that works for her.
Thanks for the help I have tried to get a lot of help with my phobia in the past and honestly most methods were pretty useless. I later found out I had a tachycardia issue and since I got put on medicine for that it has helped tremendously and my panic attacks are non-existent now. I just don't want to regress. This is what I wanted to hear though I was just concerned that I would develop crazy insensitivity to gluten once I'm off it for a while. Right now I would say I'm pretty asymptomatic. I have IBS, but it tends to be more related to fried, acidic foods and chocolate. D: I have racked up a bunch of autoimmune diseases though, that's why I'm incredibly in favor of going gluten free, because it is my understanding that it decreases the risk of developing more. Also apparently my gut does not like it, even though it doesn't really let me know (as of right now).
It'll probably be a while before I go to restaurants again though.
Hi everyone! I just got diagnosed with gluten insensitivity (I guess?) based on results from Cyrex Labs. I tried to read up a bit on that here, but got mixed results. Basically, I was a suspected Celiac for a long time but had countless negatives and even a negative biopsy. At my acupuncturist's suggestion, I had the blood test done by Cyrex and apparently I am highly reactive to it. Anyway, I have not yet gone gluten-free (kind of enjoying a few last foods before I say goodbye to them forever) but I am getting really nervous reading a lot of the posts about glutening. I have a huge phobia of vomiting (emetophobia) and right now gluten never makes me vomit and as far as I know is never even responsible for diarrhea. I'm pretty terrified of getting glutened though after I go gluten-free because it seems inevitable and pretty horrific imo. I was at a really good place with my phobia, and now I am concerned it will regress tremendously because I will be constantly living in a state of paranoia wondering if I got "glutened". Help?