Well, after several years I'm logging back in to this group. I don't know why but I couldn't imagine that I could have a problem with gluten. After being on 1 Entocort every day for over a year the GI took me off - as he said how would I know if I was better if I didn't stop taking it. Anyway within 2 days the D had started back with a vengeance. He then said try Imodium. It worked of course, but the next day the D would be worse. So after about a month he wanted me back on the Entocort which no way could I afford w/o insurance so I have ordered generic Entocort from a Canadian Pharmacy and that takes about 3 weeks to get. So, last week in desperation I thought I'd try eliminating gluten from my diet. I started last Sunday. Two days later I was improving and things just got better and better. Today was normal Even on Entocort the past year I was never this good. So my question is...is it really possible that I could improve that much in such a short time period? One week? I'd really appreciate some input.
Thanks so much...Skeptical Nancy
Just Started Gluten Free
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Nancy,
Welcome back. Yes, we're all different, and a few of us are lucky enough to respond to the diet very quickly. Several other members have had a similar response to the diet. For most of us, it takes much longer, of course.
Congratulations on such a fast turnaround, and good for you for finally giving the diet a chance. If you're only eliminating gluten, don't be surprised if your symptoms return after a month or so. If that happens, it just means that you are also sensitive to dairy products or soy, in addition to gluten. Those reactions usually won't begin to show up until after our anti-gluten antibodies have had some time to decay to a level below our trigger point for a reaction. That typically takes from a few weeks to a couple of months.
It's also possible that you might be one of the lucky few who are sensitive only to gluten, but that's pretty rare with this disease. Let's hope that's the case, though.
Tex
Welcome back. Yes, we're all different, and a few of us are lucky enough to respond to the diet very quickly. Several other members have had a similar response to the diet. For most of us, it takes much longer, of course.
Congratulations on such a fast turnaround, and good for you for finally giving the diet a chance. If you're only eliminating gluten, don't be surprised if your symptoms return after a month or so. If that happens, it just means that you are also sensitive to dairy products or soy, in addition to gluten. Those reactions usually won't begin to show up until after our anti-gluten antibodies have had some time to decay to a level below our trigger point for a reaction. That typically takes from a few weeks to a couple of months.
It's also possible that you might be one of the lucky few who are sensitive only to gluten, but that's pretty rare with this disease. Let's hope that's the case, though.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Consider yourself one of the lucky ones Nancy. After i gave up dairy, I found I had to give up gluten also to see better results. After a couple of months, I realized Soy was also giving me trouble ( to a lesser degree). I know that if I want to completely be off of Entocort, I need to get to the bottom to my intolerances. I am now taking one Entocort pill every three days...... getting there! Good luck :)
Leah
Leah
While I still had D from other sources, going gluten free alleviated other symptoms within 3 days, including insomnia, joint pain, and numbness/tingling in hands and feet. Like others I had to give up many other foods to get the D under control. Congrats on your rapid improvement.
Mary Beth
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
I'd been mostly DF for decades. Then soy (the worst) reared its ugly head.......... 
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Chel,
Yup, that's what most of us have to do is eliminate almost all processed foods. Tex will tell you most of us can only handle foods with four or fewer ingredients on the list (and of course all of those on our allowed lists - no gluten, dairy, egg, or soy). Plain salted or unsalted rice cakes, almond or cashew butter, rice milk, coconut milk, canned applesauce or peaches in juice, puffed rice (NOT Rice Krispies!), flax cereal - these are examples of processed foods most of us can eat.
Best wishes!
Deanna
Yup, that's what most of us have to do is eliminate almost all processed foods. Tex will tell you most of us can only handle foods with four or fewer ingredients on the list (and of course all of those on our allowed lists - no gluten, dairy, egg, or soy). Plain salted or unsalted rice cakes, almond or cashew butter, rice milk, coconut milk, canned applesauce or peaches in juice, puffed rice (NOT Rice Krispies!), flax cereal - these are examples of processed foods most of us can eat.
Best wishes!
Deanna
Hi Nancy,
Congratulations on your good days here! I hope they continue!
I am on month 5 of Entocort and GI is telling me to stop at the end of August. I seem to be on a roller coaster (in spite of the meds). I am almost looking forward to being off of them just to do some honest testing regarding diet and results.
May your success continue!
Marion
Congratulations on your good days here! I hope they continue!
I am on month 5 of Entocort and GI is telling me to stop at the end of August. I seem to be on a roller coaster (in spite of the meds). I am almost looking forward to being off of them just to do some honest testing regarding diet and results.
May your success continue!
Marion
Marion, have you started to wean off of it yet? If not, and your doctor wants you off by the end of this month, you should start now. it takes a while to do it right. I have to say that because I have gotten it down to such a low dose ( one every three days), my doctor is willing to let me keep going for now at this dose.
Leah
Leah
I am new to this site and have a few questions about my diet. After being diagnosed with this disease several years ago and being told to go home, there is nothing that can be done, I just two months ago had a bell click in my head and wondered about food intolerance. It has definitely made a differnce in eliminating all nuts, grapes, whole wheat, oats, barley, and just started two months ago with eliminating dairy. I have been using lactose free milk, I'm wondering if it too is a no no and what else I could use in placement? I have osteopenia, cannot take calcium supplements, wondering how to get natural calcium in food? I am returning to see my Gastro in a few weeks after not seeing him for all this time. After reading all of your other comments, wonder if he will tell me again to go home and just live with this horrid disease. I guess it is time for me to cut out all glutens, arghhh, I love my carbs. Gonna miss my pasta. Any ideas on what are good replacements? I'm so so glad that I have found this site. I was beginning to think I was going crazy with all of this. I not only have collagenous colitis, but also have hypothyroid, had a heart attack at age 50 and two open heart surgeries in the past 7 years. Of course, I am on a slew of medications, I'm wondering how many of these meds are contributing to all of this. I keep reading that ansaids, (ibuprophen, aspirin) can contribute to this disease. Of course, I take aspirin daily! If the aspirin is the cause of all of this I'm not sure what to do or how to handle this. As you can see, lots of questions. I'm taking the day to research this whole site to see what ideas I can come up with. It was my lucky day to have found this, thank's to everyone. :
BB