corinne

I have collagenous colitis, not celiac disease. It kept getting worse (D for a large part of the day, thyroid damage, damage to the teeth from lack of calcium, anemia) and the doctor wanted to put me on steroids. I said no way. I'll try changing my diet.

There is some evidence that c. colitis might be related to gluten intolerance so I tried a gluten free diet and finally the specific carbohydrate diet and things are finally getting better.

There are very few foods that I can eat right now, so lots of questions from family, friends etc. I just tell them that certain foods make me sick and leave it at that, no explanation. Some people want to know more + I answer their questions. I feel so much better that it doesn't matter too much what others think.

Maybe this is just semantics, but as a molecular biologist, I find the title somewhat misleading. We cannot change our genes. If we have celiac disease or other diseases, those genes are permanent and may be be passed onto our children. We can however, by altering our diet, change whether those genes actively produce the proteins (are expressed) which cause disease.

Mally's mama - I'm mormon too. Unfortunately, I can't eat any grains right now (even rice or corn) without getting sick, so for now I've given up on the bread part.

Um - the foul gas is gone too. I'm doing a 4 day backcountry ski trip in a week and my cabin mates will certainly appreciate that.

I'm a little nervous about the food for the trip, but the outfitter is taking our packs in by snowmobile and said that I could put an extra duffle bag of food on the sled. We'll be cooking over a woodstove so I think I'll make up and freeze some chicken soup, zucchini and carrots in portions ahead of time and can just add those to a pot. No problem with refrigeration with lots of snowbanks outside the cabin so I'll take some burgers and avocados too. Biggest problem will be lunches, but I'm thinking of bringing a widemouth thermos and warming up soup + putting that in it in the mornings before we head out skiing.

Good suggestions. I'll starting adding some more fats ie olive oil and ghee and avocados. I can't tolerate dairy at all (no cheese etc.) or nuts (almond butter and peanut butter are so far problems).

I've had a major improvement so far (6 weeks). I had D for about 2 hours a day, nausea, occasional vomiting, cramps and gas. I've had no D, nausea or vomiting at all. I've had cramps only when I tried some new foods that didn't agree (spinach, yoghurt, cheese, ground nuts). I'm down to 70% of the peptobismol that I started with. I do have collagenous colitis not celiac disease so I might be seeing more improvement than someone with celiac disease would.

Donna -LOL - I did exactly the same thing on F night with the banana pancakes. I made one big pancake in the pan and couldn't flip it over. It was pretty mangled by the time it was all cooked, but it tasted good. I tried again yesterday with much small pancakes and they actually looked like a pancake.

Today I had chicken + carrot soup for breakfast and lunch. Snacks this afternoon will be an egg, canned pears and some carrots with honey + ginger. Tonight for dinner, I have some ribs left over from dinner yesterday and beets. I'll have some banana pancakes for a bedtime snack.

One problem right now is my weight. I'm down to 120 and I'm 5'9". My energy is still good. I'm pretty active (I run, climb, hike and ski a lot) so it's hard to get enough calories on this diet. I'm hoping that the weight loss will slow down soon as I add more foods in. Things finally settled down this weekend after the spinach got rejected last week and I tried avocado. So far so good with the avocado. Avocado has lots of calories so that would be great if I could eat it.

I never seem to get bit by mosquitos even when my friends are suffering. Blackflies (hordes of them on them on the west coast of canada, not sure if they have them in the US outside Alaska) unfortunately love me. I got over 200 bites on my ankles in under 10 minutes and they are so much itchier than mosquitos.

I'm just taking the spinach out. I've had a couple of weeks with other foods (carrots, beets, zucchini, diluted grape juice, meat) and no problems so it's definitely the spinach. I'm feeling a lot better this morning and might try applesauce this weekend.

A bit frustrated today. I tried well cooked spinach Tues. evening and had a strong reaction to it so I'm feeling crappy again today. Two steps ahead, one back. It's hard to be patient.

Here's a quick reply, can send more if you more details. Artificial sweeteners vary in structure. Some such as sucralose are derivates of sugars where part of the molecule has been changed so as to make the molecule undigestible by humans. Others such as apartame are completely different molecules than sugars.

It is possible, in theory, to break disacharides down to monosaccharides in acid, but the conditions ie pH and temp. have to be exactly right. Your stomache is much more acidic than lemon juice or vinegar, but the disaccharides don't break down in your stomache and you need the enzymes in your gut such as sucrase and lactase to break them down.

I cook the butter for a long time until it just starts to brown to ensure that all of the milk proteins coagulate and then put it through a fine strainer. The ghee is completely clear so I doubt there is any casein left. I react strongly to casein, but have no reaction to ghee.

Sucralose is manufactured by subsituting chlorine for 3 of the hydroxy groups on the sucrose molecule. The chloride groups are bound very tightly to the carbon. It's not the same as the free chloride that you see as salt or in many foods. These chloride molecules make sucralose difficult to digest by humans. 10-27% of sucralose is absorbed into the bloodstream and 10% of the absorbed sucralose is broken down. The remaining 63-90% of the sucralose passes through the GI tract. Oral bacteria appear unable to break down sucralose, but there are bacteria which can dechlorinate molecules and then use the carbon as nutrients. Do these bacteria exist in the gut? We don't know, but for me it's not worth the risk.

I'm a chemist/microbiologist - maybe I should suggest digestion of sucralose by fecal bacteria as the next project to my boss.

I'm definitely not a cook, but I'm learning with this diet. For pork shoulder roast, I put it in a roasting pan with the lid on at 350 until the internal temp of the roast is 170. It takes about 2 hours in my oven for a 5 pound roast. If you want it moister and can handle some fruit, put sliced apples or peaches on top before you put it in the oven.

I eat chicken + carrot soup for breakfast and lunch. Hopefully, I can get a little more variety soon.

I take two large chicken legs/thighs, 15 carrots and about a gallon of water, put it into a big pot in the evening and boil it with the lid off for a couple of hours, then let it sit in the fridge overnight. The next morning, I skim off the fat with a ladle, pull out the carrots and put the carrots and some of the soup water into the blender. I pull the chicken out of the pot, skin it, take the bones out + chop it up. Then I put the pureed carrots and chicken back in the pot. The onions and celery cause problems for me even if I pull them out of the pot.

It sounds like a lot of work, but it takes me about 15 min. in the evening and 15 min. the next morning and I have enough soup for about 8 meals.

I've been on the SCD for 6 weeks and have had no D for 4. The improvement in D was rapid; the improvement in gas and cramping have been slow and steady.

Caffeine is a stimulant and will make your gut more active hence increase D, cramping etc. So if you can, it would be a good idea to cut out coffee, chocolate etc. for a while until things heal up.

I've been on the diet for 6 weeks now and I feel really healthy (see post a bit earlier in this thread) so I'm not worrying for now about the low weight. I did a 8 mile snowhoe last weekend and felt great (except for tired feet ).

It takes about 3 days for food to completely go through my system, so I add a new food Monday, see what happens, then try another one Thursday.

The first month on the SCD, I lost about 10 pounds. I'm about 5' 9, 120 lb so I need to gain some. The last few weeks, my weight has steadied. I hope to gain weight later when I can eat nuts and maybe dairy or dried fruit. The plus side is that I'm absorbing what I do eat a lot better. My iron levels are normal.

If possible, I get SCD meds, but most have at least corn starch as a filler. So I weigh the benefits of the drug. SCD probiotics are available; I'll see if I can find the name of the company.

Today, I'm adding bananas.

I'm another one in the SCD club. I have collagenous colitis not celiac disease. There's a strong link between collag. colitis and celiac and my mother is celiac. About 70% of people with this type of colitis eventually have symptoms reduce or disappear on a gluten free diet. I tried gluten free for a while but the more rice and corn I ate, the sicker I got.

I started the SCD 6 weeks ago and so far it has been a 100% turnaround. I have had no diarrhea (except for when I tried yoghurt and nuts), vomiting or nausea after the first 2 weeks on the diet and a lot fewer cramps and gas.

I can't seem to tolerate any dairy even farmer's cheese or homemade yoghurt. So far nut flour or nut butters cause problems too, but I'll try them again in a few months.

Typical day's meal: breakfast - chicken and carrot soup, lunch - chicken and carrot soup, snacks - eggs, peach or pear compote (uncooked fruit + peels or seeds are hard for me to digest), dinner - zucchini or beets, hamburger or turkey burger or pork chop or steak. I'm very slowly adding new foods in - 1 or 2 things a week.

Take a look on pecanbread.com for a suggested order for adding foods in.

Rice, corn, quinoa etc. have been causing me as many problems as gluten so I've been on the SCD for the last month.

I found out you can buy pecan flour online and it came in the mail yesterday. I made pancakes for dinner last night - 1 cup pecan flour, 2 eggs, 1 tbsp honey, pinch of salt, pinch of baking soda. They were soooo good. Maybe they tasted great because I haven't had anything resembling baked goods for a while.

My doc. found gastritis too when he did the endoscopy and he said there was no need to look at it further since I was young and work in a stressful job and it would go away when things calm down.

I'm moving to San Luis Obispo in July for work. Montana is beautiful but I can't wait for the warmer weather (it was 30 below a week ago) and for better food shopping. The closest town big enough to carry a good selection of gluten free foods is 300 miles. I love internet shopping.

I tried just gluten free for a while, but symptoms kept getting worse so I finally started with just carrots and lamb and have been slowly adding foods back in. So far all grains including wheat, oats, corn, rice and quinoa, potatoes, beans, soy, fish, shrimp, dairy including cheese and caffeine and raw fruits or vegetables give me diarrhea etc. Right now, I'm eating canned peaches, diluted grape juice, any meat, well cooked carrots, zucchini and beets. Hopefully, things will settle down with time and I can expand my diet.

Interesting - I had the chicken pox when I was 7 and when I was 23! The second time was one week before I started grad school. Aaarrghhh.

Just found this website. I have collagenous colitis and it's been getting much worse over the past year. Medication wasn't working. I couldn't get out of the house until almost lunchtime. My mother is celiac and since collagenous colitis has a strong link to celiac, I decided to try gluten free. It didn't help at all. The more rice I ate, the worse I felt.

I started the SCD 5 weeks ago and I have had NO symptoms at all for four weeks except when I introduce some new foods. My diet right now is very limited. I had strong reactions to yoghurt, dry curd cottage cheese, fish, nuts. The ok foods so far are beef, chicken, pork, diluted grape juice, eggs and well cooked carrots, beets, zuchini and peaches. Pretty boring, but I feel so good it's worth it.

I started with well cooked carrots and I've been introducing new foods about twice a week. I'll try a good portion of the new food, then wait about 3 days to see if I have any reaction. I hoping that I can expand the okay foods quite a bit after things settle down.

I ran 2 miles first thing this morning which felt fantastic!