corinne

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.

PM me if you have questions.

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.

Can you get Mi-del arrowroot cookies where you live? They're gluten free, fairly inexpensive and easy to crush to make a crust.

Apple chips are good. You can also make carrot, eggplant or zucchini chips on a cookie sheet at home. Puffed rice squares, coconut macaroons and nut bars are good sweet snacks that are fast to make.

Concentrated sugars and in particular high fructose can cause diarrhea; too much juice is a common cause of "toddler diarrhea".

I'm working to gain weight (5' 9 and 115 pounds), but I have colitis so it's hard to keep the weight on.

I too find that eating lots of healthy fats - nut butters, avocados and olive oil help.

I'm not sure I understand your question, but I love aioli. Friends showed me how to make it when I lived in France.

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.

I tried homemade yoghurt when I first when on the diet and got REALLY sick from it and I've moved since so I no longer have a yoghurt maker. I have a gas oven which is either hot or off so I'd need to buy another yoghurt maker which would be a nuisance if it only makes me sick again. That's why I was thinking about trying storebought yoghurt and using lactaid. Maybe, for now, I should just take probiotics as pills.

I started Asacol on Monday and so far it's making things worse, but I've heard that it can take a while for your system to adjust to it so I'll give it some time.

I also have a type of inflammatory bowel disease so maybe some this can help.

6-mp and prednisone are taken to for inflammatory bowel disease not for celiac. These drugs are both immunosuppressants and are very strong. It is hoped by taking these powerful drugs that the IBD can be brought under control. Then, drugs such as asacol are usually taken to prevent flare-ups of IBD.

Having both celiac disease and IBD takes a real toll on the digestive system and subsequently on energy. IBD can cause significant pain. Diet, for some people, has no effect on IBD so even if the celiac disease is under control, there can be continuing pain, fatigue, diarrhea etc. from the IBD. For some people eliminating dairy, high fiber foods including seeds+nuts or cruciferous veggies such as cabbage can relieve symptoms of IBD.

This board is great for getting the celiac part of things figured out and the Crohn's and Colitis Foundation of America is helpful for figuring out the IBD side of things. IBD has its ups and downs, but as your son heals from celiac disease, things will likely improve. PM me if you have questions.

I get D from dairy, but I think I'll try yoghurt with a good dose of lactaid and see if that works for probiotics.

I'm a chemistry professor. I really enjoy helping the freshman nursing, animal science and other students who really struggle with chemistry make it through and maybe even enjoy it. The other fun part is teaching the chemistry majors especially the senior electives where the students are really maturing and almost ready for the "real" world. I'm more proud of my students than anything; I love going to graduation.

PS Jenny - way to go with finishing school while being a mom plus making it into grad school. Grad school is a lot of fun; it's nice being able to focus on just the stuff you enjoy.

Thanks for sharing your story.

What kind of field work do you do? Just wondering if it might be possible to get back out there once you are feeling well for a while and feel very comfortable with the diet.

Besides gluten I don't eat any grains including rice, no dairy, no soy, no nuts, no potatoes etc. Two weeks ago, I spent a week in the field collecting water samples and algae from salt lakes in the desert. I ate canned fish and canned apricots for breakfast, canned chicken and canned carrots/beets/green beans/olives for lunch and dinner. It's not a very interesting diet, but I really like being out in the field. If you are just gluten free, it would be easier and there are a lot of backpacking meals which just require a small stove (the MSR pocket rocket fits in the palm of your hand) to heat up some water to add to the bag. If you can tolerate them, nuts, dried fruit and various energy bars can supply lots of calories if you don't have time to cook. If you are at a long-term field site and supplies get flown in, you might be able to request having a bag of your own food flown in ie rice, instant potatoes, dried or possibly canned veggies, dried fruit, some spices, dry beans, canned or dried meat/fish, a few treats, stuff that just needs hot water.

Grey - I too am on the tenure track; I just finished my first year. LOL about summers off - with 4 research students, grant writing, conferences etc. etc. it's still 14 hour+ days.

I've been gluten free for 3 years and also wish I had been diagnosed sooner. My 7 year PhD probably could have been done in 5 if I could have concentrated. I had a rough time last winter and gave some really bad lectures when the brainfog wouldn't clear and I couldn't think straight which definitely didn't help the teaching evals.

It's tough in academics. I'm afraid that if I admit how I'm feeling, that the tenure committee will go for the jugular.

Anyways, this isn't much help, but just wanted to let you know that someone else is going through similar things.

It's funny - my dad is Austrian and I actually miss eating sauerkraut

Anyways, the new GI was very good. He wants me start taking Asacol. He also suggested taking a probiotic. I'll give Asacol a shot. I haven't been feeling great lately and it's true, taking meds might actually make it easier to do the sports I enjoy. I really wanted to go for a run on the beach tonight, but the cramps got to be too much so I didn't go. Maybe tomorrow.

The SCD (and especially gluten-free) helps me keep the colitis under control; I have far fewer symptoms - bad D every few months instead of every day. Things are much better but still not under control so the GI decided today that I should try Asacol. I don't take probiotics, but the GI I visited today also strongly recommended probiotics so I'll do some research to figure out what to take and that might help too.

With collagenous colitis, the docs say that diet has no effect, but for me, I have less flares by eliminating things like cabbage, nuts etc. I eat a very simple diet (just fish, chicken and a few well-cooked fruits/veggies and avoid all grains/dairy etc). I no longer have daily D, but when it flares up, it's hard to make it work. I teach university so I can't get a sub. I was diagnosed 3 years ago and meds were the first line of treatment suggested, but I didn't want to take them because I'm very active in sports. It might be time to give in and try meds.

I have collagenous colitis not Crohn's, but the symptoms/treatments are pretty similar. It's so true that it's a matter of perspective. It's said often on this website how hard celiac is, but to me it would be great to have something that can be fixed with diet. Then I hear about other people's situations such as that little girl and feel grateful that I just have colitis.

On a side-note, I have an appointment with a GI tomorrow. For the last 2 years, I've controlled my symptoms by diet and anti-diarrheal meds such as lomotil as necessary. However, I have been having flares every 6-8 weeks and the GI will probably want me to start Asacol (I said no before). Has anyone taken Asacol? How were the side-effects?