hello, and thankyou for having me!
i had a colonoscopy on xmas eve, and was diagnosed with established CC , all 14 biopsies were proven to contain it. drug induced.
my background, all my life i have reacted to medicine/tablets/injections/the sun/ i get peeling skin, facial flushing, horrid itchy red bumps ect
last aug aged 49 i was put on heart meds, within 2 weeks i began with leg swelling, i went to my dr 4 times to be told its not the meds its your heart, on 10 oct i was given furosemide , thats when the fun started, i put on 10kg in 5 weeks, i immediatly began having awful diarrhea, very hot sweats and flushes, couldnt sleep ect. eventaully i was sent for the colonoscopy after i had a tantram at my dr. i was up in the night 5 or 6 times running for the loo, couldnt leave the house, up to 20 times a day big D was visiting.
so, i always ate well, made stuff from scratch, but i ate just a few things, potato, eggs, chicken and fish, didnt make a difference and on 7th jan this year i began budenoside, 9mg on the first day, sent me into leg wobbles, and full on sweats, and headache so on day 2 i took 6mg and thats what im on now,
my dr has s aid previously she thinks im histamine intolerant, she sent me to the specialist who said it doesnt exist, its made up. so i got nowhere.
i cant eat oranges- i love them, tomatoes, apples, and sugar also can send me flushing, and rushing!
im on day 20 of budesonide, by day 5 i was vastly improved, im day 20 and no mucus, no wind, and going 1 norman a day, i do have a bloated belly tho. i was reading on here for a week, and i now have magnesium lotion( epsom salt baths make me have a huge headache, and insomnia) and im actually sleeping better, im also taking a spray vit D3.
i cannot find any good b vits in liquid or spray form, or calcium, i react to all the tablets i ahve tried, and now norman is here, i dont want to say goodbye.
gloria- i love you. i read your 22 page getting off the meds thread, and went out and bourght a big diary, i call it my poo book, and it has what iv eaten, how many times iv been, if they were nice ones, also how much fluid iv lost, since dec 1 2019, i have lost 7kg in fluid, 2 or 3 left to go.
are you asleep yet?
i think my questions are, is it still normal to feel uncomfortable at the bottom of my belly, like iv pulled bad muscles, and how on earth can i find a decent multi vit/b complex a coenzyme one, thats not full of rubbish?
im making all my food from scratch still, im following the low fodmap diet to some degree, but the only meat im safe with is turkey/chicken, and only veg im eating is carrot. very well cooked.
this site has been amazing at giving me information, so from the UK, thankyou, each and everyone of you,
hello from the UK, im new here
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
hello from the UK, im new here
never regret the things you did,
Hi Mrs H,
It definitely sounds like to me that you have histamine intolerance. I think your symptoms are classic. So your 1st doc was right and that specialist sounds like a total waste of time. I did not have a mast cell disorder but others here have and hopefully they’ll speak up. I have had histamine issues along with seasonal allergies, and they have improved as I’ve taken Vit C and Vit D. I’ve recently started zinc and that should also help break down histamine. Tex had a very good post addressing his histamine issues: https://perskyfarms.com/phpBB2/viewtopic.php?t=24414
One other thing that comes to mind is that some of us have a MTHFR gene mutation that keeps us from clearing toxins because we can’t utilize folate, and we need folate to break down the toxins. It’s not an unusual gene mutation- something like 40% of the population has it- but it doesn’t get triggered in everyone.
I had no idea that I had this mutation until I started seeing a functional medicine doctor (also called an integrative medicine doctor). I was having a hard time starting any vitamins or supplements until I started addressing methylation issues and clearing out toxins. It’s not a quick process but well worth it. You’ll find posts here about others methylation efforts. If you tackle your histamine issues and don’t feel like you are significantly better it might be worthwhile to see if you have this gene mutation. But I’d start with treating histamine first.
I’m happy you are seeing good results with Budesonide. Do you know your food intolerances? If not, will you be able to get the Enterolab tests? I thought I had read somewhere that samples can be shipped overseas. It’s been well worth the effort and money to many of us here.
As far as discomfort, I’d say it’s not unusual to feel that lower gut tension. I did and I just figured it was just my gut inflammation. If it becomes cramping and you find you are getting constipated, it’s time to cut back Budesonide by 3mg.
I hope this helps. You have definitely come to the right place for the best guidance.
Best wishes,
Carol
It definitely sounds like to me that you have histamine intolerance. I think your symptoms are classic. So your 1st doc was right and that specialist sounds like a total waste of time. I did not have a mast cell disorder but others here have and hopefully they’ll speak up. I have had histamine issues along with seasonal allergies, and they have improved as I’ve taken Vit C and Vit D. I’ve recently started zinc and that should also help break down histamine. Tex had a very good post addressing his histamine issues: https://perskyfarms.com/phpBB2/viewtopic.php?t=24414
One other thing that comes to mind is that some of us have a MTHFR gene mutation that keeps us from clearing toxins because we can’t utilize folate, and we need folate to break down the toxins. It’s not an unusual gene mutation- something like 40% of the population has it- but it doesn’t get triggered in everyone.
I had no idea that I had this mutation until I started seeing a functional medicine doctor (also called an integrative medicine doctor). I was having a hard time starting any vitamins or supplements until I started addressing methylation issues and clearing out toxins. It’s not a quick process but well worth it. You’ll find posts here about others methylation efforts. If you tackle your histamine issues and don’t feel like you are significantly better it might be worthwhile to see if you have this gene mutation. But I’d start with treating histamine first.
I’m happy you are seeing good results with Budesonide. Do you know your food intolerances? If not, will you be able to get the Enterolab tests? I thought I had read somewhere that samples can be shipped overseas. It’s been well worth the effort and money to many of us here.
As far as discomfort, I’d say it’s not unusual to feel that lower gut tension. I did and I just figured it was just my gut inflammation. If it becomes cramping and you find you are getting constipated, it’s time to cut back Budesonide by 3mg.
I hope this helps. You have definitely come to the right place for the best guidance.
Best wishes,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Hello Mrs H,
Welcome to the group. I agree with Carol — you definitely have a histamine issue, so you will need to minimize hi-histamine foods and foods (and drugs) that promote histamine. Please be aware that very fresh chicken, especially when quickly frozen is safe, but chicken (whether raw or cooked, and including chicken soup, etc.) that has been stored at refrigeration temperatures for more than a few hours, soon becomes a high-histamine food. For me, chicken stored for one day in the frig is only a slight problem (minor bloating and uneasiness), two days in the frig is a significant problem (major bloating and very uncomfortable, plus itching), and three days in the frig is a major problem (diarrhea, severe rash and itching).
We react adversely to many medications, regardless of what our doctors claim. Some drugs will prevent us from reaching remission unless they are discontinued, even if we are taking budesonide. Citric acid, sugar and artificial sweeteners, and fiber are not our friends while we are reacting.
Regarding vitamins and mineral supplements: for those of us who can't use oral supplements, they can be administered transdermally, IOW through patches applied to the skin. they're rather expensive, but they work. We have members who have used them or are using them now, successfully.
You're off to a very good start, by cooking all your food from scratch. Note that all wild-type meats (even if they're farm or ranch-raised, are safe for virtually all of us. Except for bison, bison contain domestic cattle DNA. And all shellfish are usually safe for us, unless we have a preexisting allergy to them. So ducks, geese, quail, pheasant, rabbit, venison, antelope, etc., are all safe.
Again, welcome aboard.
Tex
Welcome to the group. I agree with Carol — you definitely have a histamine issue, so you will need to minimize hi-histamine foods and foods (and drugs) that promote histamine. Please be aware that very fresh chicken, especially when quickly frozen is safe, but chicken (whether raw or cooked, and including chicken soup, etc.) that has been stored at refrigeration temperatures for more than a few hours, soon becomes a high-histamine food. For me, chicken stored for one day in the frig is only a slight problem (minor bloating and uneasiness), two days in the frig is a significant problem (major bloating and very uncomfortable, plus itching), and three days in the frig is a major problem (diarrhea, severe rash and itching).
We react adversely to many medications, regardless of what our doctors claim. Some drugs will prevent us from reaching remission unless they are discontinued, even if we are taking budesonide. Citric acid, sugar and artificial sweeteners, and fiber are not our friends while we are reacting.
Regarding vitamins and mineral supplements: for those of us who can't use oral supplements, they can be administered transdermally, IOW through patches applied to the skin. they're rather expensive, but they work. We have members who have used them or are using them now, successfully.
You're off to a very good start, by cooking all your food from scratch. Note that all wild-type meats (even if they're farm or ranch-raised, are safe for virtually all of us. Except for bison, bison contain domestic cattle DNA. And all shellfish are usually safe for us, unless we have a preexisting allergy to them. So ducks, geese, quail, pheasant, rabbit, venison, antelope, etc., are all safe.
Again, welcome aboard.
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.
Hi, thanks for the welcome, and replies,
I shall look into what you've suggested, but so far trying to find a good b complex vitamin supplement is proving hard, it must be liquid or transdermal, but they just all seem no good in the UK. And I know my b vits are low, as is my vit d from blood tests.
The 10kg of fluid I put on from reacting to the pills is much better, but I cannot find why I had that reaction, neither can my family Dr.
Love the idea of finding out about the gene factor, not sure my family gp will go with it I'll try.
I seem to react to something, an then other times I don't, maybe it depends on how full my histamine levels are.
I will look for a vit c/zinc, an try it but mostly vit c goes straight through me.
How do I know when the 6mg I'm taking of budenoside is too much an I need to drop down? I'm just about to start week 4 on it, an iv no mucus, no urgency, and I'm going once a day an it's all ok, do I stay on 2 for a while , or alternate 1 then 2, or drop to one ?
I really do appreciate all your knowledge, it feels like iv been to hell an I'm coming out the otherside.
Another odd thing is when I have inoculation injections they have never shown in my system, not even those I had as a child, I rarely get a cold, and I rarely feel the cold, and as a kid I always used to get strep throat, but that's it nothing else, any ideas? Could that be histamine?
Medication wise, it can be from a Dr or just a vitamin tablet but I mostly react to them, food there is only tea that actually makes me vomit, as in the English drinking tea, but fruit is my enemy, within an hour of a fresh orange I will have the devil's itch and be getting red blisters on my arms,
I have come to accept I'm just not normal,
I shall look into what you've suggested, but so far trying to find a good b complex vitamin supplement is proving hard, it must be liquid or transdermal, but they just all seem no good in the UK. And I know my b vits are low, as is my vit d from blood tests.
The 10kg of fluid I put on from reacting to the pills is much better, but I cannot find why I had that reaction, neither can my family Dr.
Love the idea of finding out about the gene factor, not sure my family gp will go with it I'll try.
I seem to react to something, an then other times I don't, maybe it depends on how full my histamine levels are.
I will look for a vit c/zinc, an try it but mostly vit c goes straight through me.
How do I know when the 6mg I'm taking of budenoside is too much an I need to drop down? I'm just about to start week 4 on it, an iv no mucus, no urgency, and I'm going once a day an it's all ok, do I stay on 2 for a while , or alternate 1 then 2, or drop to one ?
I really do appreciate all your knowledge, it feels like iv been to hell an I'm coming out the otherside.
Another odd thing is when I have inoculation injections they have never shown in my system, not even those I had as a child, I rarely get a cold, and I rarely feel the cold, and as a kid I always used to get strep throat, but that's it nothing else, any ideas? Could that be histamine?
Medication wise, it can be from a Dr or just a vitamin tablet but I mostly react to them, food there is only tea that actually makes me vomit, as in the English drinking tea, but fruit is my enemy, within an hour of a fresh orange I will have the devil's itch and be getting red blisters on my arms,
I have come to accept I'm just not normal,
never regret the things you did,
You can get a comprehensive gene analysis yourself, from 23andme, no doctor needed. Once you have that data, there are many sites that will provide a detailed analysis of that data.
Vitamin C is best avoided early on (until after we heal awhile). We all seem to react to ascorbic acid early on.
Drop your dose of budesonide to the next level at the first signs of constipation. How you taper depends on how sound your remission seems to be at the time — taper more slowly if it's shaky.
Your failure to respond to vaccines suggests to me that you might have selective IgA deficiency, or some other form of Immunoglobulin deficiency issue. It might affect histamine issues, especially if your ability to produce Ige is abnormal. Your GP can do a simple blood test to confirm such an issue or rule it out. About 1 in 500 people have selective IgA deficiency. The odds are 1 in 300 for people who have gluten sensitivity.
Tex
Vitamin C is best avoided early on (until after we heal awhile). We all seem to react to ascorbic acid early on.
Drop your dose of budesonide to the next level at the first signs of constipation. How you taper depends on how sound your remission seems to be at the time — taper more slowly if it's shaky.
Your failure to respond to vaccines suggests to me that you might have selective IgA deficiency, or some other form of Immunoglobulin deficiency issue. It might affect histamine issues, especially if your ability to produce Ige is abnormal. Your GP can do a simple blood test to confirm such an issue or rule it out. About 1 in 500 people have selective IgA deficiency. The odds are 1 in 300 for people who have gluten sensitivity.
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.
Hi again Mrs H,
Tex is right of course. Vit C is tough to take in the beginning. In fact, at the start of my first big flare I had to avoid fat, sugar, caffeine, fiber, and anything acidic, as well as any supplements. Then I learned about high histamine foods and avoided those as best I could. I basically ate the same 7 safe foods for a full year, then I tried expanding my diet and adding foods one at a time. I still kept my ‘food log’ and tracked how I felt, how I slept, and any bm changes. I also continued to take a daily antihistamine, like Allegra or Claritin. During allergy season I sometimes added Benadryl at night. After remission (which was at least 2 years for me) I was able to start Magnesium and Vit D. Then-eventually- added the others but it’s a slow process.
Your priority now is to get inflammation reduced. I also took Budesonide and felt it ‘bought me time’ to get my diet in order, so that when I tapered off Budesonide I didn’t rebound back into a flare. It worked (my GI doc was impressed because people who don’t make the diet changes go right back into a flare. She wasn’t used to seeing someone transition off of Budesonide and stay stable).
I don’t think you need to be in a hurry about stopping Budesonide- just see what your body tells you, then a slow taper is better. Alternating dosages like you mentioned is a good idea.
Please consider Tex’s advice about having your IgA and IgE status checked. We have had a few people here with IgA deficiency and that might dictate some other strategies for your recovery.
Best wishes
Carol
Tex is right of course. Vit C is tough to take in the beginning. In fact, at the start of my first big flare I had to avoid fat, sugar, caffeine, fiber, and anything acidic, as well as any supplements. Then I learned about high histamine foods and avoided those as best I could. I basically ate the same 7 safe foods for a full year, then I tried expanding my diet and adding foods one at a time. I still kept my ‘food log’ and tracked how I felt, how I slept, and any bm changes. I also continued to take a daily antihistamine, like Allegra or Claritin. During allergy season I sometimes added Benadryl at night. After remission (which was at least 2 years for me) I was able to start Magnesium and Vit D. Then-eventually- added the others but it’s a slow process.
Your priority now is to get inflammation reduced. I also took Budesonide and felt it ‘bought me time’ to get my diet in order, so that when I tapered off Budesonide I didn’t rebound back into a flare. It worked (my GI doc was impressed because people who don’t make the diet changes go right back into a flare. She wasn’t used to seeing someone transition off of Budesonide and stay stable).
I don’t think you need to be in a hurry about stopping Budesonide- just see what your body tells you, then a slow taper is better. Alternating dosages like you mentioned is a good idea.
Please consider Tex’s advice about having your IgA and IgE status checked. We have had a few people here with IgA deficiency and that might dictate some other strategies for your recovery.
Best wishes
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
thankyou for taking the time to reply,
ill definatly look into what you suggested,
my family dr , said i was to only take the budez for 10/12 weeks and then stop, so my treatment depends on if i can get her to keep prescribing it me, but i really want to still be on a low dose in june as we are off to Turkey to celebrate my 50th, and our 25 wedding anniversay last november, everything was cancelled due to me living in the bathroom, lol,
iv never ever been able to take vit c...goes straight through me,
for the past 2 years i have been doing low histamine diet, now im adding low fodmap into that, and just eating the same foods, although im going to add frozen at sea salmon in hopefully this weekend, i was taking ceterizine anti histamine daily before all this started,
last year i had biopsies done ona rash iv had for about 4 years, it just came back with inflammation, thats it, little burning itchy red lumps, i hate them,
im tolerating the magnesium lotion well, and im actually sleeping a little, which is wonderful for me, i broke my neck in 2008, reacted to all the meds they tried me on for the pain, now i have a deep tissue massage every week, and only take codeine if i cant deal with the pain,
iv just hit the start of week 4 on meds, my belly is decreasing, i no longer look 9 month pregnant, the 10kg of fluid i rapidly filled up with on the furosomide is almost gone, im starting to actually like waking up again, tomorrow i go do battle with the dr to stay on this dose of budez, as im not constipated, so i dont want to lower the dose yet
your help is soooo much appreciated, thankyou,
any of you near new hampshire, ? my son is over there at the minute, but theres no new snow, and non forcast,
i hope you have a lovely day, x
ill definatly look into what you suggested,
my family dr , said i was to only take the budez for 10/12 weeks and then stop, so my treatment depends on if i can get her to keep prescribing it me, but i really want to still be on a low dose in june as we are off to Turkey to celebrate my 50th, and our 25 wedding anniversay last november, everything was cancelled due to me living in the bathroom, lol,
iv never ever been able to take vit c...goes straight through me,
for the past 2 years i have been doing low histamine diet, now im adding low fodmap into that, and just eating the same foods, although im going to add frozen at sea salmon in hopefully this weekend, i was taking ceterizine anti histamine daily before all this started,
last year i had biopsies done ona rash iv had for about 4 years, it just came back with inflammation, thats it, little burning itchy red lumps, i hate them,
im tolerating the magnesium lotion well, and im actually sleeping a little, which is wonderful for me, i broke my neck in 2008, reacted to all the meds they tried me on for the pain, now i have a deep tissue massage every week, and only take codeine if i cant deal with the pain,
iv just hit the start of week 4 on meds, my belly is decreasing, i no longer look 9 month pregnant, the 10kg of fluid i rapidly filled up with on the furosomide is almost gone, im starting to actually like waking up again, tomorrow i go do battle with the dr to stay on this dose of budez, as im not constipated, so i dont want to lower the dose yet
your help is soooo much appreciated, thankyou,
any of you near new hampshire, ? my son is over there at the minute, but theres no new snow, and non forcast,
i hope you have a lovely day, x
never regret the things you did,