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Newly diagnosed last week and like others, have used this forum for the best education I could find on the real “dos and don’ts” to manage symptoms. Seeking advice for my first post diagnosis doc appt coming up this week where they will be prescribing budesomide for 8 weeks. Quick background first:
I had sudden onset of watery D 5 weeks ago and have never had GI issues. Very healthy, athletic and 52 yrs old. They put me on a low fodmap diet first few weeks with a few days of Brat those early days. After finding this forum and countless chatgpt searches, I scrapped the strict low fodmap and started GF diet with some low fodmap. Started journaling right away, trial and error, logging triggers, etc. 2 days ago I added supplements back in like vitamin D3 & K, a multivitamin and added magnesium L Theronate back in. Have also gently introduced kale and mixed berries, ground flaxseed for more fiber and lactose free yogurt blended in a smoothie with no problems. Added animal fat (groind lamb, chicken, fish with only lemon and capers). No dairy except 2 tsps cream in just 1 small cup coffee a day.
Happy to report that I had my first “normal” movement today which elated me! I am now in week 6. My movements have mostly been 1-2x and only in morning over last 6 weeks with subtle changes of improvement last 2 weeks after getting a better handle on diet which brings me to my question for this forum.
Should I advocate in my doc appt to NOT start the steroid if I am
Seeing signs of improvement with diet OR should I take the steroid anyways to help reduce inflammation? I am reading that this only treats symptoms temporarily and not root cause which is reducing inflammation via diet for long term susceptibility.
Should I also steer doc into a pepto bismal treatment course or maybe just take it when I need it if improving?
Calprotectin level 7 weeks ago was 458
Concerns about steroid are I have osteoporosis in my immediate family and early signs of osteopenia plus I take HRT and really need to stay on hormones for post menopausal symptom control.
Thanks in advance for guidance!
Newly diagnosed and question for my first doc appt
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Ollycatmt2020
- Posts: 2
- Joined: Fri Jan 23, 2026 11:15 am
Re: Newly diagnosed and question for my first doc appt
Hi,
Welcome to the forum. I see no one has responded so I'll offer my opinion. Your description sounds as if you're on the right track, and you're recovering. But 458, as you are aware, Is a very high level for MC. As you probably know, MC is primarily driven by lymphocyte infiltration into the mucosa of the intestines, while calprotectin measures neutrophil driven inflammation of the intestinal mucosa. This doesn't change the diagnosis if your biopsies show MC.
But a calprotectin level this high usually predicts that:
Symptoms won’t resolve spontaneously.
Diet alone may not be enough initially.
Anti-inflammatory therapy (such as budesonide) is usually needed to suppress the mucosal inflammation effectively.
So if I were in your shoes, I would probably accept the doctor's recommendation to begin a budesonide treatment (while continuing to follow a safe diet). Then, after you complete the treatment and wean off of it, all of your information should be suppressed (assuming that you continue to be careful with your diet).
If the calprotectin level doesn't fall after treatment, that raises questions about:
Ongoing medication triggers
Continued gluten or food antigen exposure
Coexisting bile acid malabsorption
A rare overlap disease
And if I were in your shoes I would wait before trying a Pepto treatment because if you are using 2 treatments at once, and you begin to improve, then you don't know which one is working. Besides, budesonide will do a much faster job of suppressing the neutrophil associated inflammation, While helping to suppress a bile acid malabsorption problem (if there is one).
For many years I have insisted that osteoporosis is both a gluten sensitivity problem and/or a magnesium deficiency problem, but the medical community continued to ignore the magnesium issue. Instead, they prescribed vitamin D and calcium supplements. To my surprise, a few researchers recently published a research paper based on data proving that I've been right all along. So yes, budesonide depletes magnesium. But if you need to get your treatment into a secure recovery pattern, magnesium can be used as insurance against the threat of continued osteoporosis development.
Those research findings will be discussed in the next newsletter published by the Microscopic Colitis foundation, on February 1, 2026. So that you won't have to wait for the information, I'll send you an email with an attached copy of the article that will be used in that newsletter. If you don't receive it, or can't open it, please let me know, and I'll try something else.
Again, welcome to the forum, and I hope this helps.
Tex
Welcome to the forum. I see no one has responded so I'll offer my opinion. Your description sounds as if you're on the right track, and you're recovering. But 458, as you are aware, Is a very high level for MC. As you probably know, MC is primarily driven by lymphocyte infiltration into the mucosa of the intestines, while calprotectin measures neutrophil driven inflammation of the intestinal mucosa. This doesn't change the diagnosis if your biopsies show MC.
But a calprotectin level this high usually predicts that:
Symptoms won’t resolve spontaneously.
Diet alone may not be enough initially.
Anti-inflammatory therapy (such as budesonide) is usually needed to suppress the mucosal inflammation effectively.
So if I were in your shoes, I would probably accept the doctor's recommendation to begin a budesonide treatment (while continuing to follow a safe diet). Then, after you complete the treatment and wean off of it, all of your information should be suppressed (assuming that you continue to be careful with your diet).
If the calprotectin level doesn't fall after treatment, that raises questions about:
Ongoing medication triggers
Continued gluten or food antigen exposure
Coexisting bile acid malabsorption
A rare overlap disease
And if I were in your shoes I would wait before trying a Pepto treatment because if you are using 2 treatments at once, and you begin to improve, then you don't know which one is working. Besides, budesonide will do a much faster job of suppressing the neutrophil associated inflammation, While helping to suppress a bile acid malabsorption problem (if there is one).
For many years I have insisted that osteoporosis is both a gluten sensitivity problem and/or a magnesium deficiency problem, but the medical community continued to ignore the magnesium issue. Instead, they prescribed vitamin D and calcium supplements. To my surprise, a few researchers recently published a research paper based on data proving that I've been right all along. So yes, budesonide depletes magnesium. But if you need to get your treatment into a secure recovery pattern, magnesium can be used as insurance against the threat of continued osteoporosis development.
Those research findings will be discussed in the next newsletter published by the Microscopic Colitis foundation, on February 1, 2026. So that you won't have to wait for the information, I'll send you an email with an attached copy of the article that will be used in that newsletter. If you don't receive it, or can't open it, please let me know, and I'll try something else.
Again, welcome to the forum, and 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.
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Ollycatmt2020
- Posts: 2
- Joined: Fri Jan 23, 2026 11:15 am
Re: Newly diagnosed and question for my first doc appt
Thank you for answering my very first post so quickly! It sounds like the extra boost with the steroid will help and then can test levels again. I also plan to do the enterro lab testing. I love this community and am so grateful to have found this.