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
Thanks everyone for the replies. Yes, I've definitely seen the recurring patience theme but my stars, it's just starting to seem crazy! I'll try to address everything that's been brought up thus far.
justlisa - low FODMAP removes things that are known to be buggers in fructose malabsorption and is a diet often recommended to IBS patients. I had seen a lot of Celiacs here and elsewhere mention it as a way to combat bloating issues. This site is a pretty good resource.
Adalaide - thank you for #2. And your point on packaged foods is echoed - I gave those up in week 2 so now, 7 months in, I'd be really happy to NOT make a snack of my own.
GottaSki - thank you for #3 but, yep, all of those things are already addressed. I take supps appropriate to vitamin workups, probiotics, and walking is all I can do so I do a 1 hour walk pretty much daily.
bartfull - so jealous that you get to have eggs! Those turned on me about 4 months ago and I would do nearly anything for a slice of frittata.
cavernio - i'm already no dairy, no corn - really it's meat, veg and low FODMAP appropriate fruit. Oh, and the occasional 1/4 of quinoa, you know, if I'm feeling like a treat. I sincerely hope what I'm experiencing isn't still withdrawl. That made sense for the first couple of weeks but it's been 7 months and I really didn't eat much gluten before as I had been living very low carb for 6 years up to diagnosis.
Darn210 - thanks, yes, all supps verified gluten-free. I've also replaced all toiletry items that touch my mouth and things that I worry could "rub" (like body lotion, if you didn't manage to wash it all off your hands). And when I said all kitchen things replaced, I actually meant ALL. My dietician had me so terrified about cross-contamination that if I couldn't determine something to be 100% properly dishwashable to safety, then it was gone. Measuring cups with the little indent where the handle joins included. My closest girlfriends and I had a de-gluten the kitchen party where they had to help scrub down cabinets and counters and in return, all of my kitchen wares were offered to good homes.
Hi. I'm relatively new to this forum and so apologize for making one of my first posts what will surely be a rant. I was diagnosed Celiac through bloodwork and biopsy in January and have been eating a *strict* gluten-free diet since then. I had no Celiac symptoms prior to diagnosis - just years of unexplained joint and muscle pain - but since going gluten-free, I am an utter mess. My pain problems have improved somewhat but I have awful brain fog, dizziness, and bloating which are more uncomfortable/debilitating than the pain issues ever were.
In addition to the above problems, I seem to be developing an intolerance to everything. I've kept a very thorough food diary since starting the diet as pronounced bloating started around week 3 and I'm now trying to eat lactose free, grain free and low FODMAP in addition to being gluten-free.
I feel like I'm essentially about to be down to eating meat and veg and I'm really wondering if the trade is worth it. On gluten I had pain, yes, but it was accompanied by clarity, spontaneity and fun. On gluten-free, I'm spending all of my time cooking but, you know, only when the brain fog is light enough that I can follow a recipe.
And, truly, I can't emphasize enough how strictly I'm following the diet - all kitchen items replaced, very infrequently dining out at and always at locations with gluten-free menus and accommodating managers. I am taking vitamins in response to bloodwork results and everything else seems to be fine, medically speaking.
So my questions for any who have had a similar experience:
1) Are new intolerances ever temporary? Because this low FODMAP stuff is for the birds.
2) Has anyone ever found their problems that developed after going gluten-free to be so much more burdensome that they just scrapped the diet?
3) Any hints or ideas for things to explore / possibly provide relief are so appreciated.
Hi! I started seeing Dr. Sonia Kupfer shortly after my diagnosis as I was disappointed with my diagnosing GI, too. She has a very warm demeanor and was willing to communicate via phone and email. She was also on top of sharing information with my MD. Unfortunately, I have since moved too far to continue going there for treatment but in the visits I did have, she took her time and was incredibly thorough. I will say that scheduling procedures, depending on what you need, can be a little tricky as some things are coordinated with other departments and so you may have to make multiple trips but probably worth it if you get results.
I would say, if you are concerned that you have issues beyond Celiac, like thyroid, that you might want to consider an MD that works in an Integrative Medicine practice. I was lucky to find an amazing doc in Chicago and he was actually the one to even think to test me for Celiac after 7 years of suffering and wrong diagnoses. In my experience, an integrative doc goes beyond what a GI generally would to consider the big picture.
That said, I would highly recommend Dr. Kupfer. The entire center really is an amazing thing and you're lucky to be able to take advantage of it, drive and all.
If you'd like the name of the MD I mentioned, feel free to PM me and I will give you his info.
Thanks for the reply, Carolyn. I have done thyroid and adrenal testing. My doc thinks that I might be suffering from low thyroid (based on T3 and T4 results, my TSH is borderline) so I did try dessicated thyroid but within just a couple of weeks on low doses I was feeling dramatically worse, with regard to the fatigue. My adrenal test came back normal and now I am in the process of relocating to a new state and so don't want to try starting up thyroid meds again until I have a new doctor and, honestly, a second opinion on that.
I've also started looking at the Paleo diet, thinking that perhaps removing grains altogether could be the answer. The kick is that all of these options make sense intellectually so it's just hard to know which to give a go to first. Especially since I'm not wanting help in the digestive area -- I just want to feel alert for a change.
I have been strictly following the gluten-free diet for nearly 7 months now following my Celiac diagnosis in Jan. Prior to diagnosis I struggled with years of unexplained muscle pain and joint issues but no digestive issues. Since going gluten-free, my pain issues have improved but I've got a whole host of new symptoms, chronic fatigue the worst among them. I have already eliminated dairy and corn and try to consume smallest possible amounts of soy (usually in a processed product, such as a KIND bar, although I try to make 98% or more of my food from scratch). So in researching possible causes for ongoing fatigue, I've seen a lot about both Low FODMAP and SCD.
I did do a course of antibiotics for suspected bacterial overgrowth (diagnosed through symptoms, no breath test) that produced 0 results.
I'd so appreciate hearing experiences from folks who have tried both Low FODMAP and SCD. I already ate a very healthy/balanced diet prior to going gluten-free but, honestly, life without brown rice seems pretty sad. And, of course, any other suggestions that might help improve energy are welcome (although, that said, I'm already taking B vits, D and liquid iron but I'm game to add more to the routine if that might do the trick)!
Hi! This is my first post to celiac.com but it has been a great source of info since my diagnosis with Celiac in Jan 2012. I've recently relocated to Honolulu and am in need of a reco for a good doc. Any help is much appreciated!