Flare Symptoms Changed

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

Post Reply
cloud9er
Adélie Penguin
Adélie Penguin
Posts: 153
Joined: Sun Nov 08, 2020 8:30 am
Location: UK

Flare Symptoms Changed

Post by cloud9er »

Hello all,

Hope you are all well!

I’ve been in my current flare for a month now, I started taking 9mg Budesonide tablets on 27th May (using up previous prescription) and then changed brands on 4th June (Saturday) that are 3mg tablets but no longer contain lactose or soya. For the past two days or so my symptoms have got worse, I’m experiencing more pain and now have cramping during bowel movements that sometimes makes my toes curl. Usually this far in of taking Budesonide I start to recover. For the first two to three weeks I was having liquid diarrhoea and then it got more mushy. It’s now going backwards again. I’m also on Beta Blockers to help the gut brain axis and anxiety over my upcoming wedding, also take Mutaflor intermittently when I remember to take them as they are stored in the fridge 😂 I’ve reduced my diet again to mostly protein and potatoes but rice or corn cereal for breakfast.

I don’t understand whats going on 😞

Thank you,

Amy
Onset of tummy problems June 2014
Diagnosed with MC July 2020
Diagnosed with PCOS 2007
Negative for celiac genes

England (Near London), UK 🇬🇧
User avatar
tex
Site Admin
Site Admin
Posts: 35065
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Re: Flare Symptoms Changed

Post by tex »

Amy,

Published medical research shows that each time a budesonide (or any other corticosteroid) treatment is stopped, and then restarted again, it loses effectiveness. If this is repeated often enough, it eventually becomes totally ineffective, unless the dose is increased.

Tex
:cowboy:

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.
cloud9er
Adélie Penguin
Adélie Penguin
Posts: 153
Joined: Sun Nov 08, 2020 8:30 am
Location: UK

Re: Flare Symptoms Changed

Post by cloud9er »

Hi Tex,

That worries me! I’ve taken it three times in three years, is that realistically too much? 👀 I caused the second flare with food and third with stress as I’ve mentioned.

I’ve seen my gastro who felt my abdomen, sent me for blood tests, a stool test plus a sigmoidoscopy and gastroscopy. As far as I know bloods have come back ok. I’m being tested for infections, bacteria and parasites. The procedure took place yesterday (Thursday) and showed that I have gastritis and mild inflammation in the colon (red ring sign/lymphoid hyperplasia and erythema which is redness isn’t it). No comment from the gastro except that we are waiting for the histology. I struggled with the enemas this time, the cramping was rather uncomfortable and then gas after the procedure. I’m a big baby 😂 I did some research on here and on Google, in my opinion it just sounds like a big MC flare perhaps with an infestation or infection 🤷‍♀️

One comment from the gastro was that they’ve never had a patient that doesn’t respond to steroid treatment, so they were concerned.

Kind Regards,
Amy
Onset of tummy problems June 2014
Diagnosed with MC July 2020
Diagnosed with PCOS 2007
Negative for celiac genes

England (Near London), UK 🇬🇧
User avatar
tex
Site Admin
Site Admin
Posts: 35065
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Re: Flare Symptoms Changed

Post by tex »

Amy wrote:One comment from the gastro was that they’ve never had a patient that doesn’t respond to steroid treatment, so they were concerned.
If that's true, then they haven't had very many MC patients, because budesonide only resolves symptoms in about 60–80 % of MC cases, according to various published medical research reports (and, of course, additional published medical data show that this initial percentage of successful responding MC patients declines with repeated treatments). Furthermore, published medical data show that most MC patients who respond to budesonide, relapse within 8 weeks or less, after the treatment is ended,in about 85 % of cases.

Gastroenterologists who don't understand microscopic colitis, or how to treat it, almost always order additional, or repeat testing in the form of colonoscopies, sigmoidoscopy's, etc., when their prescribed treatments don't work. They never find anything other than MC. But instead of questioning their methods, and buckling down and learning how to properly treat the disease, they usually try to lay the blame on the patient.

Tex
:cowboy:

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.
cloud9er
Adélie Penguin
Adélie Penguin
Posts: 153
Joined: Sun Nov 08, 2020 8:30 am
Location: UK

Re: Flare Symptoms Changed

Post by cloud9er »

Hi Tex,

With all due respect my gastro taught me how to find safe foods and restrict my diet before I even found this forum. They also advised me to find a forum for support. The efforts for a quick recovery are because they know my wedding is upcoming, they’re trying to help me. Plus I’m already on a strict diet! My symptoms got worse whilst taking Budesonide 👀 It must be quite difficult for the gastros as it’s quite a rare disease that is difficult to control 🤷‍♀️

I have had unhelpful gastros prior to this one, so I do sympathise with you that you’ve had unhelpful ones.

I was sharing my experience in case it helps someone else.

Do you recommend anything that may help me? I have restricted my diet further but I could go very extreme. I may mention cholyestramine to my gastro, although I hated it. I don’t recall if it helps with cramping, pain and discomfort.

Kind Regards,
Amy
Onset of tummy problems June 2014
Diagnosed with MC July 2020
Diagnosed with PCOS 2007
Negative for celiac genes

England (Near London), UK 🇬🇧
User avatar
tex
Site Admin
Site Admin
Posts: 35065
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Re: Flare Symptoms Changed

Post by tex »

Amy,

I apologize if I came across as insulting — I didn't mean to. And Kudos to your gastroenterologists for recommending diet changes to treat this disease. They obviously are not totally lost. But the fact is, microscopic colitis is not a rare disease. It might be considered uncommon, but certainly not rare. The incidence of MC is higher than any of the other IBD's. It's more common than ulcerative colitis. It's more common than Crohn's disease. And it's more common than celiac disease. Your doctors are not to blame. They're doing the best they can, and they're obviously learning on the job.

The primary problem with understanding and treating this disease appears to be associated with the medical schools. For some unfortunate reason, probably because those assigning the curriculum, and doing the teaching in medical schools don't understand the disease, doctors have traditionally been taught little more than a very few rudimentary basics about the disease in medical school. Since those schools don't provide a significant amount of training about the disease, graduates naturally assume that it must be a rare disease. The disease is not rare. Expertise in understanding and treating it is rare.

Pregnancies in MC patients typically follow two patterns:

1. Patients in remission typically relapse during pregnancy and lactation

2. Patients who are not in remission typically go into remission during pregnancy and lactation

Here's why:

MC is strongly affected by hormonal changes. For example, most MC patients cannot reach remission if they are using HRT, and in many cases, that also applies to hormonal contraceptives. MC patients who become pregnant follow 1 of 2 possible courses — about half of them go into remission which typically lasts until lactation ceases, and the other half suffer a relapse or intensifying symptoms. Unfortunately there is no official (based on medical research) way to predict which is the most likely outcome. I have a theory that is related to mast cell issues that predicts that patients whose MC is mast cell-driven (rather than T cell-driven) tend to go into remission with pregnancy. And conversely, those whose MC is T cell-driven tend to have worsening symptoms. This theory is based on the fact that diamine oxidase enzyme concentrations in the placenta can reach approximately 500 times normal levels during pregnancy.
In pregnancy, DAO is produced at very high concentrations by the placenta (119, 120), and its concentration may become 500 times that when the woman is not pregnant (120). This increased DAO production in pregnant women may be the reason why, in women with food intolerance, remissions frequently occur during pregnancy (14).
Histamine and histamine intolerance

But magnesium also plays an important role in this situation. For one thing, most people in this country are magnesium deficient, and anyone who has an IBD is especially likely to have a magnesium deficiency because the malabsorption issues associated with IBDs tend to cause various mineral and vitamin deficiencies, including magnesium. And in addition, many medications (especially antibiotics and corticosteroids) deplete magnesium. Why does that matter? Because unused histamine in the body is normally purged by diamine oxidase (DAO) enzyme. If unused histamine is not removed from circulation, it can build up to levels that trigger adverse reactions. And as I mentioned above, DAO levels increase to roughly 500 times the normal level during pregnancy in order to protect the fetus from bioactive histamine.

But unknown to the medical community (at least this remains unrecognized by the mainstream medical community), many/most of us have mast cell/histamine issues when our MC is active. The basic problem is mast cell activation disorder (MCAD), but of course the association of reduced DAO levels compounds the problem for many of us. IBDs are known to case DAO deficiencies and our experience on this discussion board shows that this certainly applies to MC. My personal theory is that the DAO decline and MCAD issues associated with MC are virtually always due to undiagnosed magnesium deficiency (because virtually no mainstream clinicians understand how to test for magnesium deficiency, so they always mistakenly order the useless blood tests, which virtually always incorrectly rule out a magnesium deficiency). The point is that those blood tests will only detect a magnesium deficiency after all of the muscle cells of the body have been purged of their magnesium reserves as the body struggles to maintain a normal serum magnesium level. The test results will be normal even though the body may be starved for magnesium.

As further evidence that my theory is correct, I note that despite the fact that taking a DAO supplement should resolve a DAO enzyme deficiency, to date at least, no one here who has taken a DAO supplement has had any noticeable success. My guess is that the reason for this response failure is a magnesium deficiency in virtually every case. And here's the clincher:

Magnesium deficiency has been shown to cause elevated histamine levels (associated with a drastic decline in DAO levels). Here's a reference based on rat responses to magnesium deficiency:

Specific change of histamine metabolism in acute magnesium-deficient young rats.

If your symptoms are mast cell-induced, rather than T cell-induced (as defined for classic MC inflammation), then boosting your magnesium intake significantly (topically-applied magnesium works well, also, if you use enough), and minimizing your intake of high histamine foods (and histamine-releasing foods), might provide significant benefits. You might find that a good daily H1 antihistamine for a week or so may also help to reduce your symptoms. An antihistamine will also help to reduce any nausea problems For many of us, a daily H1 antihistamine seems to provide about as much benefit (for reducing diarrhea) as budesonide, but of course, that doesn't work for everyone.

Tex
:cowboy:

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.
cloud9er
Adélie Penguin
Adélie Penguin
Posts: 153
Joined: Sun Nov 08, 2020 8:30 am
Location: UK

Re: Flare Symptoms Changed

Post by cloud9er »

Hi Tex,

Thank you for your detailed reply! I will be referring back to it :)

I am a but concerned that I won’t be allowed ‘or advised not to’ get pregnant unless I’m in remission. We are hoping to try next year anyway… I have altered my menstrual cycle so that I won’t be ‘on’ during my wedding! I mean taking my next pill packet when I should have a week break. I wonder if that has had an effect.

I’m still waiting for results.

In regards to magnesium, I’ve tried an oil for a couple of nights, in addition to the discomfort where rubbed I am also experiencing strange nausea! It subsides when I wash the oil off.

I’ve also had around three separate days where I’ve passed a strange colour mucus. I describe it as beige, grey, khaki thing but I stumbled upon a reference to phlegm online and that description fits too. Again a symptom new to this flare.

My symptoms improved after the procedure, now a week on the symptoms have slowly been returning 🤔 That sounds like an infection to me 🤷‍♀️

Kind Regards,
Amy
Onset of tummy problems June 2014
Diagnosed with MC July 2020
Diagnosed with PCOS 2007
Negative for celiac genes

England (Near London), UK 🇬🇧
User avatar
tex
Site Admin
Site Admin
Posts: 35065
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Re: Flare Symptoms Changed

Post by tex »

Amy,

The mucus is a sign of severe intestinal inflammation, and most of us have experienced it when our reactions were intense/severe.

Speaking of infections, have you had a culture to test for C. diff? Sometimes the first culture misses it, so many doctors order two or three consecutive cultures, to be sure C. diff wasn't missed. Sorry if you've already mentioned this — I can't keep up with what everyone is doing.

Tex
:cowboy:

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.
cloud9er
Adélie Penguin
Adélie Penguin
Posts: 153
Joined: Sun Nov 08, 2020 8:30 am
Location: UK

Re: Flare Symptoms Changed

Post by cloud9er »

Hi Tex,

C.diff is an interesting one, my fiancé’s brother has been on extended antibiotic use the past few months and we share a bathroom with him at work. The stool test for cultures, I believe was an umbrella test for bacteria, viruses and parasites. I haven’t been provided with the results yet. I haven’t taken antibiotics since the start of 2020.

Kind Regards,
Amy
Onset of tummy problems June 2014
Diagnosed with MC July 2020
Diagnosed with PCOS 2007
Negative for celiac genes

England (Near London), UK 🇬🇧
User avatar
tex
Site Admin
Site Admin
Posts: 35065
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Re: Flare Symptoms Changed

Post by tex »

C. diff causes symptoms similar to MC, and, of course, diet changes won't resolve it.

Tex
:cowboy:

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.
cloud9er
Adélie Penguin
Adélie Penguin
Posts: 153
Joined: Sun Nov 08, 2020 8:30 am
Location: UK

Re: Flare Symptoms Changed

Post by cloud9er »

I’ve had the results and the gastro isn’t sure what is causing the inflammation or how to treat it. They’ve had multiple calls with the pathologist. The gastro thinks it’s most likely an infection or virus but I’ve tested negative for all that they have tested for. It could be Covid, it makes patchy inflammation in the gut apparently. I will be tested for further viruses. I’ve stopped Budesonide in case it is a drug reaction. They don’t think it’s the main types of IBD from their 30 year experience. I’ve asked for a de worming treatment, just in case. Apparently it doesn’t damage the gut.

They said they can’t guarantee I will be well for my wedding day 😢😞

Not sure what else to say, I’m rather gutted tbh. I have no doubt that they are doing everything they can, they are parental in their care.

Kind Regards,
Amy
Onset of tummy problems June 2014
Diagnosed with MC July 2020
Diagnosed with PCOS 2007
Negative for celiac genes

England (Near London), UK 🇬🇧
User avatar
tex
Site Admin
Site Admin
Posts: 35065
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Re: Flare Symptoms Changed

Post by tex »

Believe it or not, worms are more likely to prevent a reaction than to cause one. Helminths are even used as a treatment, in some cases. The immune system apparently concentrates on them, and ignores the MC, causing the MC reaction to stop.

Tex
:cowboy:

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.
cloud9er
Adélie Penguin
Adélie Penguin
Posts: 153
Joined: Sun Nov 08, 2020 8:30 am
Location: UK

Re: Flare Symptoms Changed

Post by cloud9er »

Hi Tex,

I have received my gastro’s report and have more information. They are testing my duodenal and colonic biopsies for CD117 Mast Cells. Most of the inflammation is sitting within the LC diagnosis except for ‘areas of active cryptitis with numerous crypt abscesses. The differential diagnosis of a superimposed active colitis could include infection or inflammatory bowel disease.’ Development of IBD can’t be ruled out, on the call they said it’s just a small step between MC and the other two 😬 The procedure was part way through Budesonide treatment so whether it was worse before, who knows 🤷‍♀️ The patchy nature of the inflammation is likely to be because of the treatment, it says. I still think it could be a reaction to the drug. I think I’ll ask for the histology results lol, also wonder what my calprotectin was.

Edit: also haemorrhagic, non-erosive, Helicobacter negative gastritis was found.

Kind Regards,
Amy
Onset of tummy problems June 2014
Diagnosed with MC July 2020
Diagnosed with PCOS 2007
Negative for celiac genes

England (Near London), UK 🇬🇧
User avatar
tex
Site Admin
Site Admin
Posts: 35065
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Re: Flare Symptoms Changed

Post by tex »

Yes, your calprotectin can range up to about 100 with MC. If you have Crohn's, it should be much higher than 100.

Tex
:cowboy:

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.
cloud9er
Adélie Penguin
Adélie Penguin
Posts: 153
Joined: Sun Nov 08, 2020 8:30 am
Location: UK

Re: Flare Symptoms Changed

Post by cloud9er »

Hi Tex,

Is that number not a bit of a low max for MC? So far I’ve had two tests above 100; on 13/01/2015 it was 289 and on 19/02/2020 it was 196. I’d imagine that with visual inflammation, although mild, this year’s would be over 100 too. I think the Crohns and UC guys would laugh at me 👀 :(

Kind Regards,
Amy
Onset of tummy problems June 2014
Diagnosed with MC July 2020
Diagnosed with PCOS 2007
Negative for celiac genes

England (Near London), UK 🇬🇧
Post Reply

Return to “Main Message Board”