Just diagnosed with Collagenous Colitis

[Bifcus16]

Hi Wonderwoman.

Nice to meet you.

You should be fine with the wild rice. It is a reasonable fibre source, and lots of us find we need to limit fibre while recovering. But when it is mixed with white rice you reduce that issue, so I would go for it. Do cook it in water or home made stock, not store bought stock. Most of the store bought stocks contain a little bit of wheat as a thickener, and you don't need that.

You will need to decide whether or not you are going to go dairy free as well. As you will have read by now, many of us are sensitive to the protein (Casein) in milk products. In my case, I found giving up dairy stopped my D in just two days. Then I found gluten was actually causing almost every other niggling health issue I had. So do think about giving up dairy until you are a bit better. Many/most commercial margarine's contain a small amount of dairy - check out the ingredients list. I found this was enough to affect me. Many US based folk use Earth Balance margarine. Or try really good quality olive oil or other interesting oils - they actually add more flavour, but you may notice the lack of salt and choose to add a bit to compensate.

Check your soy milk says gluten free - not all of them are.

Good luck with the dinner on Monday!

Oh yeah - I swapped oats for eggs too. There are also rice and millet porridge's available if you want to give them a try, and they are yummy with a bit of honey and fruit.


Lyn

[Polly]

Charlotte!

Polly here, the member with the dubious distinction of acquainting everyone with the fart saying. Glad it made you laugh!!! It was a significant day in my recovery when I had a dry fart.

You already have lots of good advice. Just wanted to add that if you want to know if you cannot tolerate gluten, you are better off ordering Dr. Fine's stool test than the blood test from your doc for celiac disease. That is because the kind of gluten intolerance that MCers have usually does NOT show up on that celiac blood test. My celiac test was negative but I am extremely sensitive to gluten. Dr. Fine's test picked it up. There is a scientific paper that explains all of this on Dr. Fine's website, titled something like "When the Villi" are Gone" at www.finerhealth.com. Also info there on Enterolab, where these tests can be ordered.

Another good reason for getting these tests is that you can have other intolerances tested for, like dairy, eggs, yeast, soy, etc. As you have probably seen, it is common for us to be intolerant to things other than gluten. Sigh. These tests can take a lot of the guesswork out of the trial and error method of determining intolerance.

Looking forward to further chats. BTW, I took asacol for about 10 weeks after diagnosis, and it did nothing for me.

Love,

Polly

[wonderwoman]

GI Dr's office did not call back this afternoon so I can expect a call tomorrow. The reason I wanted my Dr to do a blood test is because I have Medicare and it covers the lab 100%. I also will do the stool test with Dr Fine. I did some reading on his site and am not sure which test I need. Is it the one called "Gluten Sensitivity Stool & Gene Panel Complete" for $369.00? They are also throwing in a free milk sensitivity test with this panel for a limited time.

[tex]

I believe that's the one that most people choose, because it's a good panel of tests to cover the most likely issues. If funds are tight, though, some members choose to skip the gene test, and select the individual tests that they feel are the most appropriate for their personal situation. That's a tough decision to make, though, since it's virtually impossible to predict whether any individual test would be beneficial, before you see the results. Also, if you happen to have double DQ genes, then that knowledge can be very beneficial in deciding on a treatment program, so for some of us, the results of the gene test can be very enlightening.

It certainly doesn't hurt to get that celiac blood test, also, because a few of us have both MC and celiac sprue, and if you happen to be one who has fully-developed celiac sprue, then you will get a positive result on that blood test. Of course, if you have MC, a celiac diagnosis is of value mostly for academic purposes, anyway, because if you treat MC by diet, then the celiac issues will automatically be resolved, also. IOW, treating MC requires a much more comprehensive treatment program than treating celiac disease, but it's also inclusive.

Good luck with the tests,
Tex

[wonderwoman]

Hi everyone, I did not post anything yesterday as I needed to catch up on housework. I was on here last night reading a lot of the messages but didn't post as I knew once I started it would be a long one.

Remember I called the GI DR's office Thursday morning to see if my blood test on Jan 13 included a test for Celiac Disease and if none was done then I wanted the dr to schedule one. I mentioned to the GI nurse that I found this online support group and even though the GI dr said diet had nothing to do with my condition that this group felt diet changes were the only thing that helped. I told her that when I saw the GI on Feb 12 (followup for the colonoscopy I had on Feb 8) he gave me a prescription for Balsalazide (2 capsules 3x a day for two weeks and then 3 capsules 3 x a day with 11 refills, I came home with 270 capsules for $5. Such a deal!) I told the nurse I thought the GI dr told me that with this new RX my D might get worse again before it gets better. I said that when I started taking them my D increased. However I wasn't watching what I ate like I had been doing between Feb 8 & the 13th either, so I didn't know if it was the new RX or what I was eating. She said she didn't know if that was what the GI said or not because she wasn't in the room. On 2/13 & 2/14 I had 2 soft BM's. I told her that on 2/15 I ate a small tangerine (living in AZ we always have plenty of citrus fruit around) and that evening I had 4 BM's and the next day 12 BM's in 15 hours. I really can't say for sure if I said to her that this support group recommends Entocort or not but she said she would talk to the GI and he would review my chart and get back to me.

Friday morning my husband left to go to the pharmacy to pick up his RX refills and just after he left the nurse called and said she talked with the doctor and No, my C dif results are not back from the lab yet and Yes, I did have a blood test on Jan 13th for Celiac Disease and it was negative. Then she said "Because the Balsalzide Rx is not working for you, the GI ordered a prescription for Entocort and you could pick it up at the pharmacy". I said is this new Rx to replace the Balsalazide and she said "yes". I never said it wasn't working but I didn't tell her that as she got me so off guard. I thought OK, I am going for a bike ride now with my friends I'll pick it up next week. That would give me time to discuss it with this group.

When I got home an hour later from my bike ride there was a bottle of Entocort on the kitchen table. When my husband picked up his Rx's he was told there was a RX for me too, and he being a nice guy paid the $65. for it and brought it home for me. I have not started to take them as I'm not sure if I want to take them or not. I did a lot of reading last night about weening off of Entocort and I got a little scared. I am supposed to take 3 every morning. Is that the correct dosage?

Furthermore, Feb 8th, the day of my colonoscopy I was given samples of Ultrase MT20 for Pancreas enzyme disorder. I still have enough samples for this next week. I take 6 a day. GI said if they were working I may have two things going on. Pancreas & CC. I don't want to be taking a bunch of different Rx all at once. Then I won't know what is helping or what isn't. That was the only RX I was taking between 2/8 and 2/13 when my D was very very good. But then I also was eating white rice and chicken and bananas. It wasn't until the following week that I got tired of this and ate the tangerine etc. and suffered. I also have to tell you that the same day I thought what can we have for supper tonight. I found home made Chicken Chili in the freezer and thought OH that would be good. When it had defrosted I realized it had whole kernel corn and several kinds of beans in it. I had forgotten what was in it. I wanted this so bad that I thought I will only have a very small amount. Probably less than a cup. I tried picking the corn and beans out but that didn't work so I ate them. That was when I had 12 BM's in 15 hours. I immediately went back on white rice, bananas, chicken for two days. I also have been eating a lot of asparagus because it is so cheap right now.

Now about my diet changes and what I am finding. I talked with someone last night about Celiac because her husband has it and he has been gluten free since maybe November and has greatly improved. She also does not think I have Celiac Disease as I eat a mixture of oats, 6 grain cereal, raisins, & soy milk every morning for cholesterol and have for years and have continued eating this the last two weeks. I have eaten pretzels, soda crackers, wheat crackers,and ritz crackers with peanut butter and no problem. I find that it is when I eat roughage, or gassy vegetables even when they are cooked that I have problems. Give me a spinach salad and it goes right through me. I have been drinking soy milk for years only because of the convenience of being able to buy a case and keep it in the pantry. I am drinking it and using it when I cook my oats for the week. I have not had dairy products except for the regular store brand yogurt. I have avoided eating the cottage cheese I have in the refrig.

I have not been making coffee in the morning. Had gone strictly to decaf last November. I am drinking decaf tea in the morning.
Have not had any fruit except the raisins in my morning oatmeal. I was used to eating a lot of grapefruit, oranges, and apricots from our trees.

Yesterday afternoon I had 3 cups of regular coffee, a big piece of chocolate cake with frosting and a scoop of vanilla yogurt ice cream for a girls birthday at church. Last night at 4:15 I ate grilled chicken marinated in soy sauce, RiceRoni, and asparagus. At 4:50pm and 6:30 pm were the only BM's for the day.
Had no PeptoBismal yesterday or today. Ate oatmeal at 7 this morning and had very soft bm at 8:00. It is 10:45 now.

Tonight and tomorrow night we are invited to friends houses for dinner and cards. I am bringing asparagus tonight. I think I will eat some white rice before leaving so I won't be tempted to over eat (which I tend to do and shouldn't) and take a couple of PeptoBismal before leaving. I will not eat salad because I know that affects me. Then Monday night I am having 8 here for dinner and am making a chicken wild rice casserole. Someone is bringing a baked corn dish, another rolls and cranberries salad, and another a desert. I think I will eat early and just pick at the food as I don't want to have major D.

I know this is long but I had a lot to cover and hopefully this will prompt feedback from my new found support group. Thanking you in advance, Charlotte