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 have collagenous colitis which is in the same family as lymphocytic colitis. It can definitely be frustrating at times. Unfortunately, there is no known cure and it does run and up and down course. You may have months with no symptoms and sometimes things can be rough. A good gastroenterologist, as you said you have, who you can talk with on a regular basis really helps. Avoiding NSAIDs is important.
Foodwise, avoiding dairy and caffeine (and gluten of course) can help. Some people avoid spicy foods and fatty foods as well. I have some success with the specific carbohydrate diet, although it can be difficult to stay on.
As for medications, peptobismol 8 per day is the first thing to try. If that doesn't work for you, there are several other things that can be tried. Asacol works somewhat for me, although it doesn't for others. Sometimes short courses of steroids are necessary. I've had a few flare-ups where I've had D up to 20 times per day and where I'm not getting much sleep. Although steroids are best avoided, they can make life tolerable. As a previous poster mentioned, entocort is a form of steroids which have much fewer side effects.
With time, you'll find ways to minimize symptoms and to manage. I'm an avid skier, hiker and rockclimber and my friends joke about the rolls of TP and babywipes in my backpack.
My biggest problem is how many calories I need when backpacking. If I hike around 8-10 hours, I need about 4000 calories per day which means about 1500 at dinner. That's a lot of rice noodles! I try to compensate somewhat by bringing lots of peanut butter and chocolate but I still lose weight over the trip.
I haven't done any long backpacking trips gluten-free, but I have been packed for 5 days at a go and where I've had to pack light because of having mountaineering gear in my pack.
I'd second the instant grits or cream of rice for breakfast. Cream of rice is good too with some hot chocolate mix stirred in or dried fruit. For lunch, I usually do corn tortillas with some cheese now that I can eat dairy, or some jerkey or if it's a no grizzly area some foil pack tuna or chicken. Justtomatoes.com has lots of freeze-dried veggies and pretty much everything is nothing added. Dinners is rice with beans or tuna. The rice noodles are good too as mentioned.
Also, alpineaire has some entrees that are glutenfree for nights when you get into camp late/tired and don't feel like spending time on dinner.
When I visited my brother in Edmonton, I stopped at Kinnikinnik and they had gluten-free ice cream cones. I didn't buy any because I spent way too much $$$ on other goodies in the store, but they looked "real". I'm not sure if they sell these online, but many of their products are online.
Trade Joes sells Belizza sorbets. These only have fruit and sugar. The pomegranate raspberry is sooo good if you like sweet and sour.
I've tried a lot of different milks. My favorite is almond milk and rice milk is a fairly distant second. Potato milk works fairly well in baking. I tried hemp milk and spat it out; the flavor was too strong.
Wow - your friend is very lucky to be alive. I rockclimb and the stats say that less than 10% of people survive a groundfall over 25 feet. He's got a rough road ahead with the injuries and is fortunate have thoughtful friends such as you.
Thank you!! After 2 years, I have finally healed enough to tolerate rice and corn and I have started making goodies. Mostly disastorous results, but eventually it will get better and with these tips, the learning curve will flatten out.
I've never felt anger. I was scared before I had things under control. I had D up to 15 times a day and sometimes for 2 hours straight, cramps and sometimes vomiting. I was afraid that I would lose my job and someday not be able to leave the house. It was such a relief to have my life back. I am so glad I am no longer on prednisone and to know that I will be able to do the things I enjoy.
Having strong symptoms probably makes it much easier to accept.
I also have microscopic (collagenous colitis) and my mother is celiac. I, however, am not celiac. There is a correlation between microscopic colitis and celiac and microscopic colitis can often be controlled by a gluten free diet, but these are two separate diseases. I follow a completely grain-free, soy-free and dairy-free diet and yet, I still have symptoms. Right now, I'm in the middle of a bad flare up (D about 10-15 times per day) and the doctor put me on Asacol. So far that's not working and the doc said if it's not under control by Friday, he wants to put me on Prednisone. Arrggh!
As a broad generalization, colitis affects the large intestine and celiac affects the small intestine. The type of damage is can also be different (and varies with the type of colitis).
I have collagenous colitis and I follow a gluten free (well actually grain free including corn+rice, dairy free, soy free etc) diet. I haven't been diagnosed with celiac, but my mother has celiac disease.
The gastro. just started me on Asacol so that I can expand my diet a bit, because I'm losing weight, but so far Asacol is making things much worse. To try and keep up my weight, I eat avocado and olives which have healthy fat. I can't eat nuts, but if you can those have lots of good fat calories too.
I've only been on Asacol since Mon. and I'm ready to quit. Things have gotten worse - 30 min. D. this morning, again at noon, and again late afternoon plus mild cramps all day. I do have regular flareups, where things are really bad, but that's only every 6-8 weeks. Occasional severe flareups are more tolerable than everyday moderate D. I can't afford to spend that much time in the bathroom at work.
I have collagenous colitis which has an incidence rate of about 2/100 000 so about 6000 people in the US. So there's not much research on it and docs really don't know how to treat it.