Good Morning Friends - I am completely perplexed and hope someone can shed some light. My first course of Bud immediately stopped D, I continued eating normally for me while taking i (90% GF and Dairy free, super low suger), otherwise normal unrestricted, with cup of coffee and occasional wine (ok per GI) all was well. Continued well until flare (stupidly taking Advil). Second course of Bed stops D immediately.
A few weeks into the Bud, I find this site and move towards the recovery diet, as it seemed to me that the combination of Bud and recovery would help heal the gut. However, about 6 weeks ago I started feeling bloated and losing weight. Now I am down 10 lbs. And tired ALL THE TIME. Previously needed sleep aid, no more. And I have lost even a slightest bit of craving for anything I formerly enjoyed (except coffee, and I still have a cup of low acid each day). All of a sudden I lost even the slighted desire for a glass of white wine -CRAZY! Or pizza (which I made DF and DF).
This course of Bud is for 3 months before taper - taper starts in 2 weeks. My GI is less than no help - I am in the process of switching, so I don't have meaningful medical support at the moment. I've been learning a lot from everyone on this site, from Tex's amazing book, and expect to receive the kit from Enterolab this week to do testing. But my current scenario is baffling me. Any thoughts?
With best wishes for a calm stomach to all, Lisa B
How can these be? 2nd Bud course so different from 1st?
Re: How can these be? 2nd Bud course so different from 1st?
Ooops - forgot to mention thinning hair and tenderness/bloating in lower abdomen. Lisa B
Re: How can these be? 2nd Bud course so different from 1st?
Based on our combined experiences here, I've noticed that restricting a food to which we are sensitive without totally eliminating it from our diet, tends to make our immune system hypersensitive. If that happened in your situation, it might be why your symptoms became so much more severe (your immune system has switched into overdrive).
If your immune system has become much more sensitive, then the inflammation has created a nutrient malabsorption problem, which causes many of us to lose weight. Also, the elimination diet is not a high calorie diet, and if we don't account for the loss in calories in most of our meals, we can lose weight simply because we've lowered our calorie intake.
Another problem can arise from the fact that budesonide becomes less effective each time it's stopped and restarted. For most of us, though, this isn't a major problem until we've started and stopped budesonide treatments several times. We're all different, though, so you might be particularly sensitive to that effect.
The tenderness and bloating is due to the poor (incomplete) digestion that leads to the malabsorption problem, and it's caused by the inflammation associated with the disease. And thinning hair is not uncommon with IBDs.
Tex
If your immune system has become much more sensitive, then the inflammation has created a nutrient malabsorption problem, which causes many of us to lose weight. Also, the elimination diet is not a high calorie diet, and if we don't account for the loss in calories in most of our meals, we can lose weight simply because we've lowered our calorie intake.
Another problem can arise from the fact that budesonide becomes less effective each time it's stopped and restarted. For most of us, though, this isn't a major problem until we've started and stopped budesonide treatments several times. We're all different, though, so you might be particularly sensitive to that effect.
The tenderness and bloating is due to the poor (incomplete) digestion that leads to the malabsorption problem, and it's caused by the inflammation associated with the disease. And thinning hair is not uncommon with IBDs.
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: How can these be? 2nd Bud course so different from 1st?
Thank you Tex - in your experience can the abdominal discomfort be part of Budesonide side effects? Lisa B
Re: How can these be? 2nd Bud course so different from 1st?
It's not likely that budesonide is causing the symptoms you describe. Budesonide is an anti-inflammatory that's not likely to cause bloating and abdominal discomfort. It's more likely to calm the stomach, and improve the appetite. It's not impossible to be allergic to budesonide, but when that happens it usually causes neurological issues (such as balance issues, dizziness, tunnel vision, skin rash, itching, hives, swelling of face, lips, tongue, or throat) rather than digestive issues (although it can certainly cause constipation if the dosage is more than is needed to control the symptoms). The issues you describe sound like the development of a reaction to gluten, and/or some other food sensitivity.
At least those are my thoughts.
Tex
At least those are my thoughts.
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: How can these be? 2nd Bud course so different from 1st?
Good Morning Tex - and thank you for your reply.
So, I checked my food journal and the last spec of gluten that I consumed was hemp protein powder on 11/29. I live alone and so its easy for me to control going forward. And since that day I also have religiously been following the recovery diet outlined here. BUT - I expect my Enterolab lab kit to arrive today or tomorrow, and I have been unable to locate any "safe" bones to make a fresh batch of broth (even with local butchers on alert), which I find very soothing and helpful. I am in mind of what you wrote in another note to me of 12/3:
"Here's the deal. If we're using the diet to recover from MC, then our diet is our medicine, and how we take that medicine is critically important. Why take a chance on following less than a squeaky clean diet if we're trying to put our disease into remission? There's absolutely no advantage to taking any chances that might delay or prevent us from ever reaching remission. Few of us enjoy dealing with diarrhea umpteen times per day, so why wouldn't we want to do everything we can to get out of that disgusting habit?
All that said, if you order the EnteroLab tests (the A1 + C1 test panels), and you intend to follow their recommendations based on your test results, all you need to eliminate initially is gluten (because gluten takes so long to get out of our system). Most other food sensitivities have only a five or six day half-life, so they can be eliminated from our system in a matter of a week or so. After you receive your test results from EnteroLab, then you can fine tube your diet based on their recommendations."
I have beef bones and chicken feet in the freezer - if I make broth with the beef bones I feel like its a lesser risk than chicken, and has the potential to ease this current flare. Is this a risk worth taking?
Wishing you all the best today and always, Lisa B
So, I checked my food journal and the last spec of gluten that I consumed was hemp protein powder on 11/29. I live alone and so its easy for me to control going forward. And since that day I also have religiously been following the recovery diet outlined here. BUT - I expect my Enterolab lab kit to arrive today or tomorrow, and I have been unable to locate any "safe" bones to make a fresh batch of broth (even with local butchers on alert), which I find very soothing and helpful. I am in mind of what you wrote in another note to me of 12/3:
"Here's the deal. If we're using the diet to recover from MC, then our diet is our medicine, and how we take that medicine is critically important. Why take a chance on following less than a squeaky clean diet if we're trying to put our disease into remission? There's absolutely no advantage to taking any chances that might delay or prevent us from ever reaching remission. Few of us enjoy dealing with diarrhea umpteen times per day, so why wouldn't we want to do everything we can to get out of that disgusting habit?
All that said, if you order the EnteroLab tests (the A1 + C1 test panels), and you intend to follow their recommendations based on your test results, all you need to eliminate initially is gluten (because gluten takes so long to get out of our system). Most other food sensitivities have only a five or six day half-life, so they can be eliminated from our system in a matter of a week or so. After you receive your test results from EnteroLab, then you can fine tube your diet based on their recommendations."
I have beef bones and chicken feet in the freezer - if I make broth with the beef bones I feel like its a lesser risk than chicken, and has the potential to ease this current flare. Is this a risk worth taking?
Wishing you all the best today and always, Lisa B
Re: How can these be? 2nd Bud course so different from 1st?
Probably.I have beef bones and chicken feet in the freezer - if I make broth with the beef bones I feel like its a lesser risk than chicken, and has the potential to ease this current flare. Is this a risk worth taking?
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: How can these be? 2nd Bud course so different from 1st?
Hoooray!!!!!!
Best regards, Lisa
Best regards, Lisa