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Apparently advanced histology has come back that I don’t have Autoimmune Enteropthy! Gastro thinks it is lymphocytic duodenitis and wants me to start corticosteroids. As I am travelling I will take Budesonide rather than Prednisolone. I’m relieved by these developments! I’ve been advised to delay trying to conceive until we return to the UK, hopefully I’ll be in remission by then.
I’ve been reintroducing more foods by the way, ones that were safe during remission. Onwards and upwards.
Edit: just tested positive for covid for the 3rd time!
Kind Regards,
Amy
Onset of tummy problems June 2014
Diagnosed with MC July 2020
Diagnosed with PCOS 2007
Negative for celiac genes
I have news for your gastroenterologist: most of us (MC patients) have small intestinal inflammation (lymphocytic infiltration) due to MC. Similar to Crohn's disease, MC can cause inflammation in any organ in the digestive tract, from mouth to anus. That's quite common. That medical research was established approximately two decades ago. He can easily review the medical literature and discover that fact if he reviews the medical literature from that time period.
That said, the budesonide will make your traveling much easier, because it should relieve your symptoms.
Before you decide to take prednisone, if I were you, I would review some of the very old discussions in the archives of this forum made before budesonide became available in the US. You'll find that those members who used budesonide became addicted, and couldn't weaning off of it. Long-term treatment with prednisone causes draconian side effects, and attempting to wean off causes even worse side effects. Budesonide was developed so that IBD patients wouldn't have to suffer from the miseries caused by prednisone treatment.
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.
At least they got there in the end. I’ve started a round of Budesonide (without lactose this time), at the moment it seems to be helping which is a huge relief! I’m going 1-2 times a day but not formed yet. Not sure why it didn’t work in June of last year. Hopefully I won’t need to go on to Prednisolone, onwards and upwards :)
Edit: stopping the drinks and possibly oats helped prior to. Covid upset my tummy before too. My appetite has rocketed! That is nice considering I’ve been struggling with appetite for a long time.
Kind Regards,
Amy
Onset of tummy problems June 2014
Diagnosed with MC July 2020
Diagnosed with PCOS 2007
Negative for celiac genes
Stopping the oats probably did help, because most of us react to oats. And a soaring appetite very likely means that your digestion is improving.
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.
This may be helpful posting somewhere else but what is deemed better please: more solid/formed bms or less mushy/watery bms? I’m having a bm or two more a day but they are more formed.
Kind Regards,
Amy
Onset of tummy problems June 2014
Diagnosed with MC July 2020
Diagnosed with PCOS 2007
Negative for celiac genes
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.
I’ve been experiencing a strange sensation in my anus/coccyx area, it has been occurring for over a month and before starting medication. I would describe it as uncomfortable and unpleasant, it’s a constant sensation but comes and goes. Has anyone else experienced it or has an idea of what it might be? I’m not sure if it’s gastro or back/spine related.
Also, I’ve been wondering why Budesonide has worked this time around and what that means for advising other MC sufferers who experienced a worsening in their symptoms with it previously like I had?
Kind Regards,
Amy
Onset of tummy problems June 2014
Diagnosed with MC July 2020
Diagnosed with PCOS 2007
Negative for celiac genes
How long does it take on Budenoside for the fatigue to go away? Frustrating that I don’t recall.
Does anyone else experience what I do: when fatigue takes over, I sleep and wake up without an appetite and feel sick? Usually my fatigue I get very drowsy/sleepy, that has been consistent for three years.
Kind Regards,
Amy
Onset of tummy problems June 2014
Diagnosed with MC July 2020
Diagnosed with PCOS 2007
Negative for celiac genes
To be honest, I'm not sure if/when budesonide will stop the fatigue symptoms. Most of us have found that using the diet, it usually takes from one to two years for the fatigue to completely fade away. But since the disease affects us all differently, predicting timetables for specific symptoms to disappear is pretty much of a guessing game. Sorry that I couldn't 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.
the fatigue is mainly due to ongoing inflammation, and the impact of leaky gut toxins getting into our cells elsewhere in our bodies.
(the leaky gut toxins take up space in our cells where key nutrients should be )
the main way to fix this is
a) reduce inflammation in the body. low inflammation eating and lifestyle and taking good amounts of Vit D3 and magnesium
b) fix other nutrient deficiencies, B12, zinc, Vit C etc that are essential for energy
c) get good quality sleep /rest each night. You may need more rest than others in your household
there is no quick fix for this, it takes time to fix nutrient deficiencies.
about 12 - 16 weeks for mild deficiencies 6-9 months for moderate deficiencies.
It took me over 6 months to fix my magnesium deficiency.
Even now that I have had years of reasonable remission for the MC and other autoimmune issues, and I follow low inflammation eating plan and lifestyle with the combo of my health issues and age etc I still take methylated B12 and CoQ10 for energy and focus
within 2 months of stopping these, fatigue and reduced focus returns so I have learnt they are my staples
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
mainstream blood testing for B12 is the 'inactive' form of B12.
you may have adequate levels of b12 according to a blood test, but if your body is not converting this to 'active/available' B12 then you are not getting full benefit
that is why it is best to supplement with the active form.
when I was quite poorly 9 years ago I actually did active form B12 injections that I got from functional compounding pharmacy (very expensive and not subsidised) this did help the resolve the issue that I can now use lingual form of supplementation
mainstream medicine B12 injections are NOT the active form - so if your body is having issues taking inactive b12 and converting it to active available B12 then these injections are near to useless . yes they will raise the level in a blood test result and say you are not deficient albeit it will not resolve the root cause and symptoms
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you for your replies and advice! :) I’ve never fully gotten over tiredness and fatigue even when I was feeling my best with running. These very drowsy and sleepy attacks are more flare based. I keep wondering if they are food related but mostly they don’t make sense. I overanalyse food and get the fear of trying new foods.
I have noticed introducing any new food may set off an immune system panic resulting in fatigue and/or appetite loss temporarily, dating back to the first food reintroductions in December. So I will push on.
Do you think it is too soon for me to go on to stage 2? I’ve technically already started due to options during travel and the holiday. I’m guessing I should wait until I’m off of the Budesonide but this isn’t my first rodeo so I know my remission foods?
Do you think I could try egg again? My Enterolab score was 8.
Edit: I was put on a prescription of Ubiquinol which is a type of CoEnzyme Q10. I used to take B12 but stopped because of the flavourings. Great advice thank you.
Further edit: I’ve had a blood test this week completely unrelated to gastro, which says my MCHC is mildly low, I assume due to iron absorption. At the end of November my iron saturation was mildly low too. Creatine was low start of March. My potassium is slightly low too, assume that is the Budesonide. My sodium is usually on the upper limits of normal.
Kind Regards,
Amy
Onset of tummy problems June 2014
Diagnosed with MC July 2020
Diagnosed with PCOS 2007
Negative for celiac genes
I'll leave the question about whether you're ready to begin stage 2 with your diet for Gabes to ponder. I just want to make a few comments about the fatigue. Before I was able to figure out what was happening, and before I changed my diet, I ended up going to the emergency department of the local hospital twice, several months apart. Since I had been reacting for a year or so at the time, on both emergency department visits I was diagnosed with anemia, and I was given a prescription for an iron supplement, and another for a potassium supplement. This situation is very common among MC patients when they're having an active reaction. Chronic diarrhea depletes electrolytes rapidly, and lingering anemia issues are a common contributor for the fatigue and brain fog that's so persistent for MC patients, long after they are able to reach remission.
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.
with the upcoming trip. I wouldn't rush to add in ingredients
given what you have shared for the past 12 months, you need as much time as possible on bland diet and good doses of VitD3 and magnesium so some good healing can happen.
healing takes time - months not weeks. be patient
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I’m frustrated and furious to report that a very nice 5 star hotel and restaurant that we are staying at served me dairy yoghurt earlier! Fortunately for me I only ate a teaspoon worth, if that, of it and immediately said I think this is dairy One of the chefs didn’t look at my instructions clearly… Crazy, especially to think someone else who stated dairy as a problem could have an anaphylactic allergy! I felt a little sore in my stomach area afterwards but it seems like a small amount and I’m still on Budenoside to be a problem.
Edit: not sure if I mentioned that whilst on my honeymoon in St Lucia, the 5 star restaurant tried serving me foods I couldn’t eat (not the main 4 from memory though). The 4 star restaurant was fab though. The 5 stars try to be too fancy and impressive I think. This current restaurant in New Zealand is the same
Kind Regards,
Amy
Onset of tummy problems June 2014
Diagnosed with MC July 2020
Diagnosed with PCOS 2007
Negative for celiac genes
Gastro thinks it is lymphocytic duodenitis and wants me to start corticosteroids. As I am travelling I will take Budesonide rather than Prednisolone. I’m relieved by these developments! I’ve been advised to delay trying to conceive until we return to the UK, hopefully I’ll be in remission by then. 
One of the chefs didn’t look at my instructions clearly… Crazy, especially to think someone else who stated dairy as a problem could have an anaphylactic allergy! I felt a little sore in my stomach area afterwards but it seems like a small amount and I’m still on Budenoside to be a problem. 