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'm visiting Puerto Rico next month - my first big trip since being diagnosed celiac just over a year ago. I already am prepping a list of all the food I'll bring with me in my suitcase. However, I want to eat at restaurants. I love eating out and I'd love to figure out if I can do it safely in Puerto Rico without being limited to national chains. I know I can find Wendy's, Ruth's Chris, Outback but I'd love to have local food or even just not chains. Not chains always taste better! Besides I could eat at those chains at home. I don't but I could.
So does anyone have experience in Puerto Rico? I know to be worried of cross contamination and even a language barrier (already printed spanish travel cards). Any great restaurants? Any that accommodates gluten-free really well or even (fingers crossed) a gluten free menu? Any experience or recommendations would be greatly appreciated.
Thanks Gemini! That was a really nice response. I dont know anyone who has had their thyroid nuked (except a friend of my mom's daughter but she had cancer and had her thyroid removed first!) so it was really nice to hear that real individuals were fine after. And you are right - spooky is totally the word for the treatment. I keep picturing myself glowing when the lights are off like on cartoons. I know that doesn't happen but it's still an image in my head.
I'm on Tapazole which is a thyroid and immune supressant. Been on it with very little dose deviation for 8 years. I expected to have to go down on my dose after going gluten free and each doctor I tell I am having thyroid problems assumes I'm too hypo from too much meds now. Not the case. I'm too hyper and just went up to the max dose of tapazole. I've had a large range of symptoms because of this culminating and really not functioning in my day to day life well.
And yes a lot of people with Hyperthyroid do get their thyroid nuked right away. Because I was/am so young and was tolerating and was stable on tapozole before, my doctor continued me on the drug (it's actually the common practice in Europe, while nuking is the common practice here). Now since it seems my thyroid won't get controlled (I mean I just went on the max dose so I won't know for a while if it works) I'm getting pushed by my endocrinologist (whose opinion I do trust), my primary care dr (whose opinion I don't trust) and my mom (whose opinion I rely on too much). I wanted to post as a last ditch effort to see if anyone else has experienced this and what happened. (thanks to those who already posted!)
I've done that a little but mostly with relatives because of the increased chance that they could have it. Unfortunately the two I think most likely to also have it are rather flakey and I don't think have done anything about it. On the other hand my immediate family got tested after I was diagnosed and my brother's doctor (a rather prominent guy) said he would bet money my bro didn't have it - he had no symptoms, or so he thought. And yep, you guessed it my brother was positive and had more extreme intestinal damage than me! It just shows that EVERYONE should be tested!!
So my fear has been realized! My thyroid function as continued to get worse and I found out today that I'II have to have radioactive iodine and nuke my thyroid : (
Just wanted to post my question again and expand it a little. Has anyone one had an autoimmune disorder that after going gluten free changed? Got better? got worse? I keep asking doctors and no body, not endocrine doctors not celiac experts, seem to have an answer for me as to why this is happening now. I keep hoping my thyroid will go back to my normal. Heck I thought after going gluten free I'd be able to go down on my meds. (weirdly it seemed to help some of my other food allergies calm down. I'm eating apples for the first time in 10 years).
Anyways please post any insights! I want to make sure I'm doing the right thing (this whole deal is stressful enough). Thanks!!
Has anyone settled this yet? There I was sucking my delicious werthers' hard candy only to see it has glucose syrup made from wheat in it! I was horrifid!! I've since done some research on glucose syrup but I'm still very confused! I've found that according to the werther's site, gluten free living magazine site and (in another post) the Australian New zelend equivalent of the FDA and celiac foundation that its fine. Yet I've seen numberpus posts by people who say they have problems. It seems to be a real issue abroad as glucose syrup in the states is made from corn. It just happens that werther's are from Germany. I'm a silent celiac and can't tell on my own what's causing a problem. Has anyone else figured this out? I mean scientifically, not just being scared of the idea or the word 'wheat'.
Im visiting my grandma next week and she lives down the street from the best ice cream! So of course I started to really question how safe it is for us celiacs and thought I'd ask! What has others experience been with delicious frozen treats at ice cream parlors. I've been gluten-free for months but have no symptoms (I beleive) when glutened so it's hard for me to know (I was asymptomatic from the start). My mom has a severe nut allergy but if they just use a clean scoop she's good. Can I get hard ice cream (clearly with no gluten add ins) if they just use a clean scoop? Or do I have to ask for it to be from a fresh tub? Or is soft serve the best way to go? I've thought toppings like sprinkles (or jimmies if there is anyone else from New England out there!) are completely out of the question as ice cream is usually rolled in it. Has that been your experience? What have you guys found to be the easiest and safe way to enjoy ice cream?
I'm been confirmed Celiac and gluten-free now for almost 7 months now. I also have had Grave's Disease (autoimmune hyERthyroid) for 8 years and have been on meds ever since. All of a sudden 3 months ago I started to feel just really rotten and 6 weeks ago found out my thyroid had become very over active again despite being on meds (the same dose I've had for years). I thought I was doing better but this week I went to the doctor again and my heart rate was still high which most likely indicates my thyroid is still high. I'm afraid they are going to want to nuke my thyroid if it doesn't resolve soon.
Has anyone else had Grave's complications AFTER going gluten free? I'm trying to find out if this is something that will just act up a little and then return to (my) normal or is it just going to get worse until extreme action is taken. Thank you so much in advance for responding!!!
I usually bring some gluten-free turkey from the deli, some cheese and cracker and some snacks like fruit, applesauce, cookies, yogurt (if I brought an ice pack). It's not that far off from what I brought for lunch back in high school but it's tasty, dependable, easy, not fussy and in a pinch you can pick it up at the grocery store on the way. I went to the movies with friends a couple weeks ago and on the way found myself starving. I stopped at the local market that has all boars head deli so I know it's gluten-free got some turkey and cheddar grabbed a box of gluten-free crackers and I was all set. I won't lie, I ate it during the previews : ) Yay! Hope this helps and good luck!
I just got a great baking cookbook from the library (the Blackbird Bakery Gluten Free) but there are several recipes, including muffins and brownies that include almond meal. I'm allergic to nuts but despite lots of Internet searching I haven't found a substitute. I was thinking maybe teff flour as it is a high protein flour. Anyone have suggestions?
Wow thank you both do much for responding! It's really nice to get reassurance and understanding. My parents and brother try (most of the time) but they don't understand.
As to squirmitch's questions. I'm a 24 year old female and was diagnosed in January. I have had my vitamins levels tested and was iron deficient so I'm taking a supplement for that as well as a multi vitamin. I have a thyroid condition, that's how I was diagnosed actually. Had it for years now and pushed my endocrine doc to do extra labs as I've been feeling so bad he says it's fine. I'm trying really really hard to stay gluten free. I haven't slipped on purpose and as far as I know haven't been glutened by accident but I'm silent so I may not know if I was. I do live with my family who does eat gluten. I'm really paranoid though and try really hard to keep everything clean and seperate but there is only so much I can do. The night before I went gluten-free I did my best to 'de-gluten' the kitchen i boxed anything made of wood cleaned out a cabinet just for gluten-free food, got rid of the wheat flour, put everything through the dishwasher and washed out the drawers and most of the cabinets. I also designated (some i bought new) hard to clean things like a collender, pizza cutter etc gluten-free so my parents and brother wont use it, unless cooking for me. I eat mainly things labeled gluten free or naturally gluten free. There are some products I've had that maybe werent labeled gluten-free but the ingredient list looked ok and or I googled it to double check. I have eaten out a bit but only to places that have a gluten-free menu, thankfully there are quite a few in my area.
Stef-the-kicking-cuty - thank you for posting that it took you so long too! I was starting to get nervous because everyone seemed through the gluten withdrawl symptoms in days or weeks not months. I was becoming scared that it would be perminent. I guess I just had it bad. ALL my favorite foods had gluten in them so maybe I fed the addiction too much and it just takes longer than most?
squirmingitch - has your symptoms finally subsided? I've been dealing with the same thing. I'm incredibly moody, extremely tired, insomnia, when I do sleep I'm still tired, my appetites all over the place, my brain is foggy and this week ive been so nauseas. I've been gluten free for 3.5 months now. And what really gets me is that I was silent. I didn't have symptoms, at least not extreme ones before I was diagnosed. And now I just feel so awful like all the time. I keep trying to keep my head up because I know eventually it has to stop but I really don't know how much more I can take. I'm litterally trying to keep myself from crying right now. I've tried asking my doctor and nutritionist but they're no help. They just say wait and see and they'll see me in a few months. I don't want to feel like this for a few more months. Sorry to rant on, I just needed someone to listen.
That's really interesting, I have Grave's too! I know it has a correlation with celiac but with OAS too? I was diagnosed with OAS 10 years ago, Grave's 8 years ago and Celiac 2 weeks ago (although I was told I probably had it longer than I have had Graves). It's interesting you were diagnosed for the same three conditions in a very different order. I doubt that means anything I just find it interesting. It's nice to know someone out there is dealing with a similar situation