Attn newbies or anyone struggling....

[tex]

Hi Julie,

Vitamin D shouldn't cause any symptoms, and I've never heard of magnesium causing bloating. It can cause diarrhea for some people, especially if they take too much, or the wrong form of magnesium, but it shouldn't cause bloating or gas. That sounds more like a gluten problem. Either you don't have all the gluten out of your system yet, or something else (other than the vitamin D and magnesium), in your diet is probably causing problems. Gluten antibodies have a 120 day half-life, so it often takes six or eight weeks, or more, to get it out of one's system.

Tex

[julieh2195]

ok, thank you.

[Mjg]

I saw my new GI Dr yesterday and he told me I would need to continue with the Budesonide for 3-4 months and then taper slowly. He agreed with my diet (I’m following the stage one eating plan) but said I needed to add a little fiber to it. I’m terrified as even with the Budesonide and diet I still get D every couple of days. Any recommendations on fiber?

[Erica P-G]

Hi Mjg,
Don’t sweat the fiber request right now....you’ll get plenty of it after you heal a while...fiber acts like a scraper to our gut until we get good healing under our belts.
Cheers
Erica

[SallySage]

Hello! I'm a newbie to this forum, but unfortunately not a newbie to MC. Can someone please point me in the direction of the eating plan? Is it all spelled out somewhere? I saw where there is a phase one, etc...but is there a comprehensive list of foods for each phase? I apologize if this has been posted many times before...I feel very lost and confused at the moment.
Thank you.

[tex]

Hello Sally,

Welcome to the group. Here's a direct link to the stage one eating plan thread:

Suggested Eating Plan - Stage ONE

Many of us have different and widely-ranging food sensitivities, so it's very difficult to recommend specific foods for any individual. Most recommendations are based on avoiding certain foods because avoiding those foods is the key to stopping the inflammation. If you don't want to guess which foods are causing your information, you can track down exactly which foods are causing your immune system to produce antibodies by ordering the A1 plus C1 panels from EnteroLab. Alternatively, you can simply adopt an elimination diet that avoids all the foods that are likely to cause inflammation, and then after you're in remission, you can test those foods carefully, one at a time, before adding any of them back into your diet.

I hope this helps. Again, welcome to the group, and please feel free to ask anything.

Tex

[Ds2blessed]

Hey Tex
I joined this group about 5 years ago - newly diagnosed then- apparently my first round of budesonide put me in remission for 5 years and I thought I was “healed”! Well, I’m back!! This time budesonide is not working! Only been on it 2 weeks so I’m plugging along. However I wanted to ask a couple of questions. Is MC ever misdiagnosed? I didn’t get an LC or CC diagnosis just plain ‘op MC. I it important to know what kind? Also, about the entrolab. Will results be accurate since I’m on budesonide currently? Also, I hate sweet potatoes ... what’s up with russet potatoes? I’d much rather eat those! I haven’t tried cutting out gluten but I’m afraid I may need to try that ... oh the dread! M symptoms seem to be pretty mild compared to some so I can’t complain. I’m scheduled for another colonoscopy end of the month since the budesonide isn’t working .... I guess doc wants to rule out anything else. So, makes me question the doctor and the diagnosis. Am I justified in that questioning?

[tex]

Hi,

Sorry to hear that you needed to come baack, but welcome back, anyway. While it's true that budesonide usually works in less than two weeks, giving up on it at that point seems as though it might be somewhat shortsighted. Occasionally it will begin to work after more time has passed. That's somewhat of a longshot, but still possible.

I'll attempt to answer your questions as best I can. Gastroenterologists often fail to diagnose MC, by overlooking it, when it does, in fact, exist. But I've never heard of it being misdiagnosed, when it does not exist. The diagnostic criteria are so specific, that I don't see how it could logically be misdiagnosed, by any competent pathologist. At least a dozen different types of microscopic colitis have been documented, and the two most common types, LC and CC, are known to segue back and forth from one type to the other, at random, but knowing the specific type is unnecessary, because the treatment is the same for all types of MC.

Treatment with budesonide for up to a few months is not likely to affect your EnteroLab results. Between six months and a year of budesonide treatment may raise the risk of a false negative result or two, and after a year of treatment, many false-negative results are likely.

A few of us react to white potatoes, and Russets are much harder to digest than the colored potatoes such as yellow, red, etc., due to the type of starch they contain. If you hesitate to cut out gluten, that suggests that you may not actually be serious about using diet changes to resolve your MC symptoms, because virtually all of us are sensitive to gluten, and eliminating it from our diets permanently, is the cornerstone of our recovery.

Regarding your doctor's request for another colonoscopy to search for other issues, yes, you are definitely justified in doubting the benefits of that procedure. I note that there have been many posts here over the years, by many members whose doctors questioned their MC diagnosis because the treatment the doctors prescribed didn't stop the MC symptoms. I have never heard of a subsequent colonoscopy where one of those doctors actually discovered anything worthwhile. So in my strictly unprofessional opinion, whenever you encounter a doctor who makes such a request for a second or third colonoscopy to search for another issue that might be causing the diarrhea, because his or her prescribed treatment didn't work, you can be sure you're dealing with a doctor who doesn't understand MC, and who definitely doesn't understand how to treat it.

I hope some of this is helpful.

Tex

[julieh2195]

Hi again,
I've been on Budesonide and the gluten free, dairy free, oat free, nut (nut milk also) free, mostly sugar free diet since April 1. I've been trying to eat/not eat what you've recommended. I am taking Mg, multi vit, and Vit D. I have never had so much putrid smelling gas in my life. It is 24/7, keeps me up at night. Doesn't seem to matter what I eat or don't eat (for that matter)! No diarrhea, normal stools every day! But the gas is, at times incapacitating, especially if I want to go anywhere. I just can't seem to figure out what's causing it, doesn't seem to be getting better. And like I said, I've never had it this bad in my life, even when I've been on the Budesonide before. Could it be the gluten free bread I'm eating??
Thank you for any input!
Julie

[tex]

Hello Julie,

Gas is produced when certain carbohydrates are digested in the presence of certain normal intestinal bacteria. The digestion of grains is especially prone to the production of gas, and the digestion of certain cruciferous vegetables, especially broccoli, can cause gas issues. Although it hasn't been verified by medical research, I have a hunch that the magnitude of any gas problem is primarily due to the type and population density of certain species of gut bacteria. Because of this issue, gas production can vary, despite eating the same foods, as the gut microbiome changes over time.

Gut bacteria are most active when there is partially digested, or undigested, food available in the gut. Therefore, when the gut is inflamed, as with MC, the increase in partially digested food leads to an increase in gut bacteria activity, and consequently, an increase in gas production. Reducing the consumption of the particular carbs that are causing the increased gas production, should reduce problem. Likewise, as the inflammation is reduced, digestion should improve, which will reduce the available food supply for those bacteria, and gas production will be reduced.

So yes, the gluten-free bread you're eating may be the source of the problem. One or more of the grains used in that bread may be difficult for your digestive system to handle, at least in your current stage of healing. In other words, your digestive system may be unable to completely digest the carbs in that bread.

I hope this helps,

Tex

[julieh2195]

Thank you for that info! So much to learn. Seems like the gluten free bread is the only thing I can think of that is consistent with the days I've had the gas. I will eliminate it to see if it helps. Thank you again for the info.
Julie

[Mjg]

My gut burbles and gurgles constantly and I have gas daily. . I do eat gluten free bread but not daily. The only other carbs I eat are potatoes and white rice. Any suggestions?

[tex]

Most likely, you're not completely digesting all of the carbs in whatever flours are used in that gluten free bread, but it might be due to some of the other carbs, instead. Most fibers are prebiotic's for gut bacteria, so it could also be due to bacteria that are living off the fiber in your diet. As they break down the fiber, they produce gas as a byproduct.

Tex

[Mjg]

So I shouldn’t eat potatoes or white rice either? Those are the only others I eat. I’m so frustrated my GI tells me I’m limiting my diet too much! He wants me to add some fiber to bulk my stool. I’m terrified of that even on Budesonide I still get D every couple of days. I am also very fearful of staying on Budesonide when I read posts from so many people who have had terrible side effects.

[Erica P-G]

Hi Mjg,
How long have you been healing? Not very long....then expect to have some uncomfortable symptoms until you heal awhile. Yellow potato, and Minute Rice may be a good choice if those two foods are kind to you. Russet potato is a bit harder to digest if that is one of your potato choices.

Patience and Progress go hand in hand....hang in there