Hi everyone,
I wasn't sure where to ask questions, I have so many. I feel so blessed to have found you all!
I started my journey with slowly losing weight starting in April 2021. By August I was down about 5 pounds. By October it had accelerated to 10 more pounds, so 15. (I'm 5'8" and now 122) I had an appointment with my PCP for the abnormal weight loss, I was eating the same and had no other symptoms.
Is this normal to start with the weight loss before WD or other symptoms? Should I be looking into other causes?
A week before the October appointment I took TUDCA to clear my liver because of toxins I assumed were circulating because of loss.
That set me into the big WD. My PCP sent me to a GI and by mid November I was diagnosed with LC by biopsy. Does the TUDCA result imply I have BAM?
My appointment to actually discuss my diagnosis was set for mid December. In the meantime he told me to take 20 mg Pepcid AC daily. That worked through my first meal of the day then WD returned for the rest of the day. I researched and found PepZin GI. It worked immediately. 2x daily gave me once a day very soft Bristol Scale 4. Finally at my appointment the GI put me on mesalamine. After a week on it I was losing traction started WD and quit it. New normal returned immediately again.
I had no changes until mid March when the stool was slowly becoming softer. GI started me on 6 mg Budesonide. I have osteoporosis thus the lower dose. We tried it for 2 weeks with no improvement. He said it can take time so he lowered the dose to 3 mg and kept me on it.
Finally I went into remission for 2 1/2 weeks, but you know what happens next. After ONLY 3 days off Budesonide the soft stools returned. (Not WD)
Now I found your information and am starting the elimination diet. I plan to have the EnteroLabs testing done but I'm confused if I should be on the diet for a while first? I'm very familiar with elimination diets, I have food allergies milk, cinnamon, onion family, pineapple,...
My doctor in passing suggested gluten could be a problem but was trying to put me in remission without going that route.
Should I eliminate the Pepcid AC and the PepZin GI? They have been lifesaving. I haven't gone through horrible long bouts of WD thanks to them. There was one time I ate out and had dairy on my food - it caused WD within a short time, but once cleared, I was back on track.
How would I wean off 3mg Budesonide? Skip a day for how long?
Thanks for reading all of this, you are all awesome!
Cindy
New to this forum and LC, have questions
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Re: New to this forum and LC, have questions
Hello Cindy,
Welcome to the group. Weight loss is a common symptom of LC, so it's likely that you had LC a while before the WD issue began. According to some research literature it's somewhat common to have the disease without clinical symptoms.I know virtually nothing about TUDCA, but it sounds like it triggered your clinical symptoms.
Most of us wean off budesonide by taking one capsule every other day for a couple weeks, one capsule every third day for a couple weeks, one capsule every fourth day, etc. I'm afraid I can't advise you on the Pepcid AC and the PepZin GI, because we have no experience using that to control diarrhea. If you're going to treat this disease by diet control, you'll definitely need to avoid gluten, because we're all of gluten sensitive.
Sorry that I could be more helpful.
Tex
Welcome to the group. Weight loss is a common symptom of LC, so it's likely that you had LC a while before the WD issue began. According to some research literature it's somewhat common to have the disease without clinical symptoms.I know virtually nothing about TUDCA, but it sounds like it triggered your clinical symptoms.
Most of us wean off budesonide by taking one capsule every other day for a couple weeks, one capsule every third day for a couple weeks, one capsule every fourth day, etc. I'm afraid I can't advise you on the Pepcid AC and the PepZin GI, because we have no experience using that to control diarrhea. If you're going to treat this disease by diet control, you'll definitely need to avoid gluten, because we're all of gluten sensitive.
Sorry that I could be more helpful.
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.
Re: New to this forum and LC, have questions
Tex,
Thank-you for the reply. I started the elimination diet after I posted.
Does everyone that has MC also have a gluten problem?
I am unsure what medications and supplements to get rid of next. I tried stopping the probiotic but symptoms returnied after a few days. I went back on it and they improved immediately. I realize there are no strong indicators for using probiotics but it is helping me.
I am in a remission state that I don't want to reverse as I continue except to learn my sensitive foods. It took 8 months to find remission.
When do you recommend I continue to step 2? After all medications are removed and I am still in remission?
Thanks again,
Cindy
Thank-you for the reply. I started the elimination diet after I posted.
Does everyone that has MC also have a gluten problem?
I am unsure what medications and supplements to get rid of next. I tried stopping the probiotic but symptoms returnied after a few days. I went back on it and they improved immediately. I realize there are no strong indicators for using probiotics but it is helping me.
I am in a remission state that I don't want to reverse as I continue except to learn my sensitive foods. It took 8 months to find remission.
When do you recommend I continue to step 2? After all medications are removed and I am still in remission?
Thanks again,
Cindy
Re: New to this forum and LC, have questions
Yes, virtually all of us are sensitive to gluten. A few of us have celiac disease, but most of us have non-celiac gluten sensitivity. Unfortunately, non-celiac gluten sensitivity typically causes just as much misery as celiac disease. In some cases, the symptoms are even worse than the symptoms caused by celiac disease.
A few of us benefit from the use of certain probiotics, but most of us do not. More than a few of us react adversely to them, and in those cases, continuing to use probiotics can prevent ever reaching remission. We have to listen to our body — if the probiotic you are using is helping, then continue to use it.
It's possible to suffer a relapse after discontinuing budesonide for up to six or eight weeks. After that, we are usually out of the woods, and our intestines have healed sufficiently that our remission is beginning to stabilize. So ideally, it's best to wait that long before attempting to add any new foods to your diet, and when you do, go slowly, testing them one at a time, for three days, before adding them into your diet as a safe food.
I hope this helps,
Tex
A few of us benefit from the use of certain probiotics, but most of us do not. More than a few of us react adversely to them, and in those cases, continuing to use probiotics can prevent ever reaching remission. We have to listen to our body — if the probiotic you are using is helping, then continue to use it.
It's possible to suffer a relapse after discontinuing budesonide for up to six or eight weeks. After that, we are usually out of the woods, and our intestines have healed sufficiently that our remission is beginning to stabilize. So ideally, it's best to wait that long before attempting to add any new foods to your diet, and when you do, go slowly, testing them one at a time, for three days, before adding them into your diet as a safe food.
I hope this helps,
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.