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
Very interesting topic which I'm now really tuned into. I've been on celiac diet for several years now, in earnest for about 2. Take lots of vitamin/mineral supplements prescribed by my doc. Checks blood every 6 to 9 weeks to make sure all is okay. About 7 years ago, before I found I had celiac, I was dx with a huge goiter wrapped around my trachea. After checking the attending nodes it was decided there was no malignancy, but because it was positioned as it was they couldn't do the nuke. Had to have it surgically removed because if it had swelled at all after nuking it would have squeezed the trachea shut! All went well, including the repositioning of the parathyroids which control calcium levels in the body. I didn't lose the ability to talk or sing, and that made me very happy! So, I've been on levothyroxine for the past several years. Lately my TSH has been going up and up almost to 10 which panicked me (not my doc). He says all the other thyroid tests he's done look fine although he's tweaking the treatment with a tiny bit of T-3. He says not to worry about the TSH and I think that's what's being said by some of these postings, too. I'll be interested to read more of this topic in the coming months.
I agree, the longer you're doing this the easier and better it gets. Yes, eating out is almost impossible, but so be it. I'd rather feel good all the time. One thing I'd suggest when you're starting out on this journey. Don't think you can safely use foods labeled "gluten free" as many have substances in them that will bother you. Some of the gums that are used instead of gluten to thicken and stabilize for instance. And there is some evidence now that some celiacs are sensitive to the gluten found in other grains thought to be "safe" such as corn and rice. So take the advice of a previous entry to eat a simple diet for the time being, and definitely use real foods (butter, not substitutes, for example). I'd also suggest you keep a diary of what you eat and drink, and how you feel the next day (make a simple chart on your computer xcel to make it easier). You might find some correlations. Good luck and be glad you've found this out early in your life so you can deal with it before anything really bad happens.
Several years ago I read a book by an endocrinologist from California named Diana Schwarzbein. She has an interesting personal history and she got interested in endocrinology and thought she would be involved in esoteric, exotic diseases but after graduation, landed a job at a diabetes clinic (if I recall correctly). She worked there for some time and was eventually intrigued and dismayed by the fact that many if not all of her patients (type II diabetics) were not getting better even though they were trying to follow their previous doctors orders. I can't possibly relate her discoveries here, but it will be worth the time of anyone who is interested to get her book out of the library (The Schwarzbein Principle) and read that first chapter. What an eye opener! She made logical, intelligent, out-of-the-box observations and came up with some stunning breakthroughs. I'd be interested to know what anyone who reads this book thinks. I know it is a bit out of date (1999) but she is still far ahead of a lot of so-called experts!
Hi Ollie's Mom,
You're right to point out that most nutritionists and doctors would not suggest a diet such as yours (or mine, which is very similar). I keep forgetting that my doc and his nutritionist are different! His practice teaches that heavy grain consumption and the use of vegetable oils in cooking are not good ways to maintain health. I, too, have excellent cholesterol numbers and I don't shy away from animal fat. In fact, I drink a small glass of half and half with breakfast (no milk right now) and make certain it's the best half and half I can find! My doctor also feels that butter, lard and olive oil (in moderation) is the only palette of choices. Because I've been changing my diet for the past several years I've become very aware of what is written in the news media and what passes as scientific. Some years ago I heard or read an article about why
saturated (animal) fat got such a bad name and it boiled down to the fact that there were some very powerful interests in the food industry AND in the scientific field that wanted to push the consumption of vegetable oils (early in the last century). The scientists who pushed this were very influential in that they were the "elders" who actually reviewed other budding scientist's research projects (mostly governmental research projects such as NIH). Of course, they were going to lean towards recommending funding for "science" that supported their own viewpoints and deny those that might be contradictory. So, it was perpetuated for a long, long time. I do think that there has been some easing but mainly by what could be called "a fringe medical community" of doctors and nutritionists who started looking at the evidence of their patient's diets and made a change. Also, each of us is a unique individual with unique heritages, so one approach doesn't necessarily fit all of us! Feeling good and having blood tests that show a healthy pattern are probably the best way to know what suits each of us. I tried vegetarianism for a while and didn't realize how bad I was feeling but that was me.
Sorry this is so long, but I'm passionate about being careful about eating.
I've seen the movie. I agree the science seems sketchy! Yes, we are omnivores and should eat a variety of foods, including the offal of animals that people used to eat (not that I do)! It's a very extreme diet and in my humble opinion, dangerous. Talk to a nutritionist about it and see what she says!
I've come to the same conclusion about the possibility of finding the "answers" in my lifetime. But, I'm still plugging away at eating as gluten-free as I possibly can. My doctor is even more of a stickler on other things, too, like certain foods that are heavy on latex (I'm allergic as are many people apparently), and especially on the balance of Omega 3 and Omega 6s. He has had me on many supplements for the past several years. Yes, I'm sick of taking pills, but I don't have migraines anymore, or cramps in my legs. I've lost about 20 pounds that I needed to lose, and in general my blood tests are coming out pretty well. My major problem is arthritis-like pains, but even they have gotten better using some mild medications (which I'm currently trying to wean myself off of). I'm not "in the pits" like I was for a while (a year or so?!) when I felt absolutely overwhelmed in trying to care for myself when I really didn't feel I knew enough all the while trying to explain to my large family what was happening. Even though loving and caring, they simply didn't know how to help either, except listen and not laugh too much at whatever current "weird" elimination diet I was on! I still get teased and my doctor gets laughed at, too, for "making it up as he goes along." That's okay by me. I want a doctor who is willing to learn from the latest research and change his mind if he feels it right to do so. Anyhow, for those of you just starting on this journey, hang in there. This Forum really helped me during some dark, late computer nights! Thanks to all the dear people who care.
I agree, but try to find a doctor who understands nutrition and supplements (with blood tests to back it up for good measure). Most doctors have a rudimentary working knowledge but some really have dived into studying it. My doc tests for LOTS of different things, the usual stuff, too, and as much as I hated getting blood draws, I'm really glad he does. I've been trying to be gluten free for about 4 years. Didn't take it really seriously at first. Thought I could cheat. Thought it was a question of "a little gluten vs a lot." Well I finally got the message. My doc has now come to the conclusion that some celiacs can't handle corn gluten either, so I'm doing NO grains for a month to see if my arthritis symptoms get better. We'll see, I'm on week 3.
This disease is really like the "Magical Mystery Tour!" You just never know what to expect, and it changes daily I think!
If you get fish oil, make sure you get the triple strength otherwise you are really getting more omega 6s than you want to. We get enough of that in our regular diets, and we're usually short on the omega 3s. Triple strength is a better balance. Also, flax seed oil used to be considered a good source of omega 3s, but my doctor says current evidence has shown that humans do not metabolize it the same way as the lab rats studied do. So, he recommends either fish oil or algae oil, if your a vegetarian.
Over the past 3 years I've had all varieties, and found that when I was taking too much fish oil I had a problem. I have been on many elimination diets, causing all sorts of bowel issues, and finally decided (in addition to no gluten) to again do away with eggs and dairy and solanaceous vegetables (joint pains). I've also added -- very slowly at first -- raw (unpasteurized) sauerkraut. I eat some everyday, and I do believe it has helped as the bowel frequency, color and consistency have all improved to what I would consider "better" than before I was diagnosed!! So, there is hope. You really do have to take the time to read, study the literature, communicate on this site with others, and most important, as has been said by others: listen to your own body. Write everything down. I made up a weekly chart to keep track of all my supplements, what foods I was eating, how the bowels were behaving and anything else I needed to track. It helps immensely. I feel that I'm definitely on the right track finally, and it has been a long, tedious fight!
Best of luck.
....mind you im still having a hard time trying to figure out what to have for breakfast cause alot of times my guts no not really want anything thats so solid
i have to try and find a nice soft soothing filling breakfast so i have alot of investagateing to do in the breakfast feild
so im off to do some searching have a great day everyone
Wow is right. that is quite a list. I'm similar but have found that I tolerate hominy grits. I know, corn gluten is not usually suspect but I don't want any kind of gluten (can't eat rice apparently). I think when they make the grits the gluten is destroyed by the process.
anyhow, maybe that's one thing you could try. I do use butter and salt on them. MMMM good !
Me, too! I was wondering what I had done wrong and was looking at others to see if they had a warning bar also and they didn't. Now I understand that when they look at mine they don't see a warning bar (mine isn't green so I guess I'm okay!)
I live in the Columbus, Ohio area. I'm not sure about the protocol on this forum for giving you information (i.e., my name or doctor's name). Anyone know if it's okay or how to do that privately? Wouldn't want to do anything that's not squeeky clean.
Reading these posts gives me hope (and scares me a little, too!). What foods do you suggest I drop back to as "safe"? I've been eating corn grits, with salt and real butter on them, along with 1/2 and 1/2. Occasionally an egg. Some simple meats like beef patty, or steak, or once in a while lamb, and potatoes. I had been on an elimination diet and added real, unpasteurized sauerkraut with no problem and I think it helpd my gut! I suspect I can't eat rice (white or brown), maybe wild rice would be okay. What about vegetables? If these are all "moving targets" that may change what's the use. I'm getting pretty wierded out by all this! I've been trying to get this under control for several years, but I didn't really take it seriously at first. Now I do and I'm having more trouble than before. Your posts helped me to understand I'm not the only one who has experienced that.
Anyhow, what did you eat at first to get better?!