A little advice would be very welcome please!

[charlie fh]

Hi there...

I have been following this support group since i was diagnosed with CC late last year which has been a help but im recently struggeling to get a goodbalance and understanding of my symptoms.

A brief summary of my story... i beleive i developed MC after a culmination of bad events last year . It started with a terrible tooth problem which the dentists couldnt fix for up to 6 weeks.. during this time i was given various anti biotics (3 courses) and told to take ibruprofen for the pain in which there was a lot .. i was also taking lansoprazole for acid reflux which id developed earlier last year. i should add im of normal weight and 34 years old.

i managed to get the tooth problem sorted but about 3-4 weeks later i developed the D ... i was going about 3-5 times a day roughly for 4 weeks. i had all the usual tests and ended up having a colonoscopy which diagnosed CC. This is when i put 2 and 2 together and realised it must have been caused by all the meds/antibiotics/ibruprofen which i had taken for 6 weeks.

my symtoms resovled after about 6-8 weeks WITHOUT the use of budesonide but i noticed that my stool genrally was more soft and/or semi formed and its been like that ever since ..occasionally i have a good week when it feels more formed or regular . i only go once a day but notice i have much more flatulance and also very occasional mucus. my stomach can also tend to make more noise!? I have limited my gluten intake a lot and went without for 2-3 months.. i follow the recomendations from you guys a lot . i also take Vit d and tried magnesium which seemed to make my stomach noises worse. a little disconcerting .

Sorry to ramble on , but to cut a long story short, Im struggeling to get myself completly clear and back to normal . Is there any advice you can help me with? i cant afford a stool test at the moment and also liv in london so not sure i can even send it to the states. I found the histamine info quite interesting .. I know theres not a one sizefits all answer but any advice would be warmly apreciated .

Thank you!!
C

[tex]

Hello Charlie,

Welcome to the group. Your story seems typical of many of us. Ibuprofen, antibiotics, and PPIs seem to be the main causes of the development of microscopic colitis. The loud digestive system noises are called borborygmus, and they seem to be unique to MC.

Yes, the EnteroLab tests can be ordered from anywhere in the world, but you can achieve remission without them if you have the patience and perseverance required to follow an elimination diet long enough to reach remission. But in order to do that, it's necessary to eliminate every trace of gluten, casein, soy, and chicken eggs from your diet. As little as a few molecules of any of those proteins can cause most of us to react.

It can take several months to purge all of the gluten from our system, after we start the diet, so reaching remission can take anywhere from a few weeks to a few months or more. It takes some of us over a year to reach remission. Once you reach remission, then you can test some of those foods again, one at a time, for three days, to see if they are safe before adding them back into your diet.

But there's no point in testing gluten, because all of us are sensitive to gluten, and we can never eat it again, if we wish to remain in remission. Anti-gluten (antigliadin) antibodies have a 120 day half-life, and this is why it takes so long to stop a reaction against gluten.

Follow the "Suggested Eating Plan - Stage One" in the section on "Guidelines for recovery", and remember, an elimination diet is not designed to be an epicurean delight — it's medicine that we use to recover from microscopic colitis. We have to have faith, patients, and perseverance. The diet will bring remission, but the digestive system heals slowly, so we have to be patient.

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

Tex

[charlie fh]

Hi Tex
Thanks for replying so quickly!

What i dont understand is that ive been in a "sort of remission" for a year... i havnt had any major flare ups or trips to the toilet fingers crossed... and ive had gluten from time to time , mainly in form of pasta. Ive had what i would call mild symptoms like slightly unformed stools and excess gas etc but i cant seem to improve from that which leaves me with some form of doubt!? I also dont understand , if my MC was caused by a mix of meds PPI's etc how can the MC carry on after stopping this.. i understand inflamation and we all have inflamation from time to time which can come out in various ways in the body, but am i always going to be likely to get a flare up if i get stressed or cause inflamation some how ?? just because i caused it one time with the PPi's meds etc??

Sorry for my ignorance , im just trying to get to the bottom of things . no pun intended .

many thanks in advance !

C

[tex]

To clarify, any one of those medications that were named, and others, often cause the development of MC. A combination of medications is not required to trigger the disease. You have mild symptoms because for one thing, you're lucky, so you don't have major flares. In fact, some MC patients even have asymptomatic disease, that is, they don't have any digestive system symptoms.

Most likely, those mild symptoms continue because you occasionally eat gluten, and it takes several months, in most cases, to eliminate the antibodies triggered by gluten because of their long half-life. But it's also possible that you might be reacting to some other food sensitivity. If you can maintain a perfectly clean diet for several months (one that avoids all of your food sensitivities, 100%), you will almost surely see those symptoms disappear.

Some patients are fortunate enough to be able to stop the medication that triggers their disease fast enough that food sensitivities will not be triggered. But after a certain length of time, which surely varies by patients, and their level of inflammation, the inflammation triggers gluten sensitivity and leaky gut, and the leaky gut triggers various food sensitivities, depending on how long the inflammation problem remains unaddressed. Because the food sensitivities cause the immune system to produce antibodies against those proteins, once those food sensitivities are created, they're permanent. So yes, we can have a flare at any time, and it can be triggered by our diet, chronic stress, medications, or other possible environmental characteristics.

Tex

[charlie fh]

Thank you ..Thats very interesting indeed! and definately makes sense for me.

I will try dropping the gluten entirely and see how i get on. i do think the "nerves" play a factor with me and thats something id like to improve. The brain -gut connection is something i find interesting. Would magnesium help with this?

Also what are good ways to improve leaky gut? and would leaky gut contribute to the sounds and gurglings i get from time to time and also the excess gas and bloating?
Would a good anti histamine also help improve my situation ?


All advice is greatly apreciated !.

Thanks again

C

[tex]

Yes, magnesium will help, and vitamin D will help, because MC depletes both magnesium and vitamin D. And a magnesium deficiency is one of the reasons why many of us developed MC in the first place, because a magnesium deficiency and/or a vitamin D deficiency increases the risk of developing an autoimmune disease. Magnesium helps to relieve stress and muscle tension and certain nervous system functions. Vitamin D is necessary in order to allow your immune system to function properly. It helps to prevent infections and diseases, and it assists in healing.

Totally avoiding gluten should resolve the leaky gut problem within a few weeks to a few months, and it will also stop the bloating and the loud gurgling noises. All of those symptoms are due to the gluten in your diet.

As to whether an antihistamine will help, the answer is, "maybe". An antihistamine seems to help in certain situations, such as maintaining remission after we wean off budesonide, for example. Long-term use of an antihistamine is usually counterproductive, though, because eventually they begin to cause the very symptoms that they are being used to prevent.

Tex

[charlie fh]

Hi Tex

sorryfor belated reply, thanks very much for this info its been very helpful to me!!.. im trying a completely gluten free diet along with solgar chelated magnesium , Vit d and L glutimine . i also have been taking S boulardii on and off the last month.. is this any good ? Ive noticed that my tongue is a bit cotton like and giving and burnt snesation.. could this be yeast realted?

I should have also mentioned ive been on 10mg of amitriptyline for the last year which my doctor prescribed during early undiagnosed symtoms of MC. Im now attempting to come off of it and didnt realise it can cause nasty withdrawl symptoms.. The doctor failed to mention anything as per usual and i just got in the habit of taking it. Ive had a bad episode on the toilet since not taking yesterday and am now slightly concerned this will affect my recovery . Drugs really are no good!! is there any advice you can help me with regards to this ? or anyone else who knows about this??

many thanks in advance !

Peace

Charlie

[tex]

Sorry for the delayed response, I've been dealing with a kidney stone issue. Your description of your tongue does sound as though you may have developed a yeast overgrowth. Although it's somewhat common with MC, normally, it only develops when there is a significant amount of carbohydrates/sugar In the diet, and usually it can be controlled/resolved by limiting the amount of carbohydrates/sugar in the diet. I didn't realize that probiotics could increase the risk of developing a yeast overgrowth, but I'm not sure that it's not possible, also, since I'm not an expert on probiotics (because they're generally not recommended when treating MC).

Usually, low doses of amitriptyline in the 10 to 15 mg range are not addictive, however, I suppose it's not impossible, because were all different. A few MC patients (primarily constipation-dominant MC patients) use a low dose of amitriptyline to regulate their motility. For most of us, the use of amitriptyline increases the risk of diarrhea. I didn't realize that discontinuing it could cause diarrhea, but I suppose that's possible.

Tex

[charlie fh]

Hi Tex sorry to hear about kidney stones ! hope it clears up quickly.

Thanks again for all help and info ... Its all a big learning curve which im struggerling to get my head around sometimes but hopefully im getting there.
I still struggle with gurgling, sensations and excess gas .. i wonder weather the gluten is taking a while to clear from my system . Im still getting relativly normal but loose stools with some shape so wonder weather if the sounds of digestion might just be normal for me?? How do we know when the sounds are a symptom of inflamation? As most people have digestive/gurgling sounds for time to time... perhaps i just have leaky gut? I should add ive always had problems with indegestion and bloating way before my MC came along.. i think is was all caused by a terrible case of campylobactor 12 years ago which gave me IBS like symtoms.

I have actually found certain probiotics to be a great help for me, mainly one called symprove..which has had a lot of trials done over here in the UK ..but i understand s boulardii is a type of yeast not a bacteria so am unsure whether to take to much.

One more question and again very grateful for all your time and advice Tex... How do you define whether a food is suited or not when your not showing obvious symtoms .. for intance everytime i have white rice it tends to go through me rather quickly and gives me looser stools but doesnt cause gurgling sounds etc.. when i used to have a bit of pasta, i would get more gurgling sounds but it would travel trough me much slower.!?? Hope that makes sense .

Cheers !

Charlie

[tex]

If someone can hear the gurgling on the other side of the room, that's proof of an active MC reaction.

To answer your other question, when MC is active, it's virtually impossible to judge whether a particular food is safe, or not. Because reactions are not always consistent in that situation (when we're not in remission), and they may be influenced by a reaction to some other food. They can be exaggerated, or even masked, probably depending on the inflammation level. When we already have diarrhea, how can we tell if another food is causing diarrhea. The only way to detect safe and unsafe foods when our MC is active, is with the EnteroLab tests.

Another confounding issue is the influence of inflammation on digestion. Inflammation, especially long-term inflammation, causes the small intestine to lose its ability to produce digestive enzymes that are necessary in order to be able to digest certain foods. It's why everyone becomes lactose intolerant when they catch the flu. Almost immediately, the flu compromises the ability of the small intestine to produce lactase enzyme. If the inflammation continues, the production of other enzymes becomes compromised. The net result is poor digestion in the form of partially digested food, and that can cause additional digestive issues, and most Importantly, it can cause fermenting by opportunistic gut bacteria. The reason you feel that probiotics help, is almost surely associated with that issue — the right probiotic can enhance fermentation of certain foods (In other words, it can alter the fermentation process so that it's less likely to be problematic).

But the point here is that partially digested food is a sign of poor digestion, which in our case, is a sign of active MC, which is always associated with chronic inflammation. And yes, it's associated with leaky gut, because inflammation causes leaky gut, which initially triggers all our food sensitivities. To resolve the leaky gut problem, we have to stop the inflammation. That's the point of carefully selecting every food in our diet so that our immune system no longer produces antibodies against any of them, and that will resolve the leaky gut.

I hope this helps.

Tex

[charlie fh]

Hi tex thanks . I think i understnd.
The problem im having is that im having generally normal stools (once a day) if not a little loose at times but ocaasionally get load gurgling sounds so i dont know what stage im at at all , if i have active MC?? . the Stools would suggest ive made progress but still need healing ... at the onset of my MC (in which i was going 4-5 times a day) the worst symtoms resovled themselves on there own after a month and i think this must have been due to stopping PPI's etc and eating a relatively clean diet.. SO could it be possible in my situation that i caught MC in time to stop anything getting worse .. i just dont know anymore its a very hard detective game in which im struggerling to find a culprit. i just dont want things to get worse again and i worry about the sounds and sensations . perhaps im over reacting and i just need to purge the gluten from my system . If i can afford the stool test i will do it as that will no doubt answer a lot of questions.
bit of a ramble , many thanks as always for your insight!!

charlie

[tex]

Yes, it's certainly possible that you might have stopped taking the PPIs in time. The bottom line here is, if you have no symptoms, you're not taking any anti-inflammatory medications, and you have normal bowel movements, without making any diet changes, then you probably have not triggered the development of microscopic colitis. By normal bowel movements, I mean the same pattern of bowel movements you had before this issue ever came up — not some theoretical "normal" bowel movement pattern. If, however, your gastroenterologist diagnosed MC, then you have asymptomatic MC. Or, you're one of those lucky, rare MC patients who manage to enjoy spontaneous remission. If the latter is the case, your remission might last for days, months, years, or indefinitely.

Tex

[charlie fh]

Hi Tex.

Yes I got diagnosed after a colonoscopy around a year ago and I was definitly not asymptomatic when i was going 4-5 times a day but it seemed to resovle itselve very gradually after a month or so on its own without medication.. (it was by no means "normal" just not WD) so i would pressume that the MC started to ease down at this point??.. this left me with looser stools (once a day) but semi able to get back to normal.. i would say its never got back to the point it was before i was diagnosed with MC though. which is why i have this doubt and all the questions. (sorry about that)

SO.... this is where i am now, i know the gut can take a long time to heal so perhaps this is the stage im at and its a matter of healing.

One thing i do wonder and perhaps you know the answer.... if one has acheived remission and returned to a semi normal state... would a colonoscopy pick up MC inflamation in a biopsy or would it show as normal? I did speak to one good Gastro person who said the gut can stay in a state of "trauma" for years.... which i suppose makes sense.

As always many thanks for your help

Charlie

[tex]

That gastroenterologist is correct, The intestines are very slow to heal. Most of us can get the disease into remission within a few months or so, while the rest of us require a year or more, but a repeat colonoscopy at that point will still show basically the same amount of damage to the mucosal cells of the intestines. For most of us it appears to take approximately 10 years, more or less, for the cells of the colonic mucosa to return to normal histology, after we reach remission.

Tex

[charlie fh]

Blimey! so i suppose this really is a slow process of healing .. and would be understanderble if you get the odd bad day or rumble in the gut.

Are there any anti inflammatory supplements or foods you can recommend .. I read that turmeric/curcumin can cause iflamation for some but if it doesnt with me is that a good idea ?

Thanks
Charlie