lots of things to find out

[janhsmn]

Hi everyone, I came across this group whilst wandereing round the internet looking for information on microscopic colitis. I am in the uk.

Some background. I have suffered with bowel problems, mainly violent sudden onset stomach cramps closely followed by diarrhea for more years than I care to mention (I am 52 now). Went to doctors many times and usually told it was IBS and to take immodium. Two years ago it became worse to the point that some days I could take 6 tablets to get me through the day. Travel was a nightmare as that brought on the physcological challenge or my mind making me need the loo. So I went back to the GP and was given a blood test for coeliac which came back negative. I then went on the FODMAP diet and it seemed that avoiding gluten, milk, garlic and onions made some improvement. But then I went downhill again. In the middle of this my sister who had no symptoms was diagnosed Coeliac and her daughter, my niece, with hasimotos an autoimmune thyroid condition.

My eldest two daughters are also affected very badly by gluten, but not known if coeliac as wont go back on gluten. One did have a colonoscopy due to bleeding from the bowel, nothing was found thank goodness and going gluten free stopped this. But no diagnosis of why.

Anyway back to me, sorry for the long posting. I was then put on amitriptyline, a very low does of 10mg to try and help with the stomach cramps, this was after having tried all the usual like buscopan etc. Again seemed to help a bit. Due to a persistent cough also given lanszoprazole for acid reflux.

Having had sister diagnosed with coeliac I had another blood test which was still negative but managed to get a referral to a gastrologist. Given the family history he agreed to do a endoscopy and colonoscopy to see what was going on . Had the usual yucky prep medication to flush system out and had both tests done. Since then whilst waiting the results my bouts of diarrhea reduced somewhat.

Went to see consultant and he said no coeliac and no colitis or chrons, however he did talk about microscopic colitis and a thickening of the bowel wall and mentioned collegan (like ladies get injected in their lips he said. I asked about diet and he said eat what you want, perhaps avoid potato and tomato skins and very spicy food. And heavily wheat based foods but overall up to me. Said I needed to stop all meds as they were rubbish.

I went back to GP and have been off lansoprazole for 3 weeks not but was prescribed ranitidine as a replacement. Am still on amitriptyline at the minute as gp didn't want to change everything at once.

I am now down to probably one, possibly two flare ups a week, but have bad heartburn even with the ranitidine. I am currently not excluding anything from my diet. On the down side I have noticed quite and increase in joint pains in my hands and ankles, they feel very stiff and achy. So a few questions:

Can a colonoscopy which flushes out all the system lead to a reduction in symptoms, perhaps if there was something not nice lurking in there
Does anyone take amitriptyline for this condition
What about diet, can something I am eating cause the joint pains
Why could the bouts of diarreah have reduced dramatically

If there is anything else you think I should know I would be very grateful as still not really sure what I should be doing and medical practitioners don't seem to be much help.

Thanks

[tex]

Hello Jan,

Welcome to our Internet family. Apparently you have collagenous colitis and many of the diet changes you have made are beneficial, but in order to stop the symptoms completely, we have to avoid all foods (and all meds) that are causing us to produce antibodies that lead to the T cell inflammation that is associated with microscopic colitis.

The reason why you are having severe heartburn is almost surely due to poor digestion (caused by the CC) and suppressing gastric acid with proton pump inhibitors (PPIs) or H2 blockers can make the problem worse in many cases because gastric acid may be inadequate to begin with. We have to have adequate stomach acid in order to properly initiate the digestive process. If digestion doesn't begin properly then it cannot improve further down the line, and the result is very poorly digested food, gas, cramps, and diarrhea (D). That said, some of us have histamine/mast cell issues that cause too much stomach acid to be produced and in those cases H2 blockers can sometimes help. PPIs are never safe to take because they have been shown to cause many health problems, including MC.

To address your questions:

Can a colonoscopy which flushes out all the system lead to a reduction in symptoms, perhaps if there was something not nice lurking in there

Yes, for some of us, flushing out all the toxic crud and fermenting food in our gut can temporarily help. It's not a cure though, because we have to stop the inflammation from being regenerated in order to stop the symptoms and bring stable remission.

Does anyone take amitriptyline for this condition

A few members here have found that low-dose (10 mg) amitriptyline can help to regulate motility. Usually, those who find amitriptyline helpful are those who have constipation as a symptom (rather than diarrhea), or they have alternating D and C.

What about diet, can something I am eating cause the joint pains

Yes, the inflammation resulting from any of the foods that are causing your immune system to produce antibodies perpetuates a condition of increased intestinal permeability (aka leaky gut). This allows partially-digested peptides of those foods to enter the bloodstream, promoting the production of additional antibodies and those peptides are subsequently deposited out in joints and various organs, causing inflammation and pain. As you fine tune your diet to eliminate those foods 100 %, the inflammation will slowly fade away and the increased intestinal permeability will gradually cease. Joint aches and pains will fade away as the inflammation resolves.

Why could the bouts of diarreah have reduced dramatically

Some people enjoy occasional episodes of spontaneous remission. This can occur with any IBD, but it doesn't happen very often with MC. Most of us have to stick with a rigid diet at all times in order to remain in remission. It's also possible that your diet is helping to heal your gut.

The reason why your celiac tests were negative is because if you have been on a GF diet for longer than a month or 2, the screening tests used by physicians have such poor sensitivity and reliability that there is virtually no way that they can detect anything less than fully-developed celiac disease. The villi of the small intestine have to be almost totally destroyed before someone can be officially diagnosed with celiac disease. It can take years for that degree of damage to accrue. Physicians need a much more reliable way to diagnose celiac disease. As it is, only about 1 in 20 celiacs are ever officially diagnosed.

And to make matters worse, many of us have non-celiac gluten sensitivity. Our symptoms are just as severe as celiacs, but the medical community does not even have a way to diagnose non-celiac gluten sensitivity. Because of that, many doctors try to save face by incorrectly insisting that non-celiac gluten sensitivity does not exist. But it doesn't take a rocket scientist to figure out that if someone feels much better by avoiding gluten, they are clearly gluten-sensitive.

You're correct that the medical community still does not understand celiac disease, let alone MC. That's why we formed this discussion forum over 11 years ago, so that we could learn from each other how to get our health back.

Again, welcome aboard, and please feel free to ask anything.

Tex

[janhsmn]

Hi Tex thank you for your comprehensive reply. I was fully on gluten when tested having been though a coeliac diagnosis with my sister I understood that. What things should I be avoiding and is a total avoid or are small bits ok. For example no bread etc but if says contains wheat in a stock cube does that matter. I suppose the confusing thing for me at the minute is symptoms regarding stomach seem to be much improved even when eating a normal diet. All very confusing

Thanks

[Gabes-Apg]

Jan
welcome to the group - sympathies that you had to find us...

here are some recent posts /discussions re the 'small bit of gluten'
it may not be causing noticeable digestion issues, but it can have neurological impact.
For those with MC - too much inflammation is not good - it can make us react to almost everything.
our best way to wellness is minimizing inflammation via avoiding major inflammation triggers

Can I be almost gluten free
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22300

But i tested negative to the celiac blood test
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22245

http://kellybroganmd.com/two-foods-may-sabotage-brain/

But I don’t have Celiac!
When I suggest elimination of gluten to patients, they sometimes tell me that they have already been tested, and “don’t have Celiac”. The limitations of currently available conventional testing are very real as most physicians who do a “Celiac panel” are only testing for alpha gliadin, tissue transglutaminase 2, and endomesial antibody, a small portion of the potential immune responses to this food. In a grain consisting of 6 sets of chromosomes, capable of producing greater than 23,000 proteins, this testing may just be too small a window into a very complex space. In one study, inflammatory response was noted in healthy volunteers, suggesting that gluten may cause reactions in everyone.

hope this helps!
I have drafted some info about an eating plan for the early stages of healing for new people - it is a work in progress but please read it and see what you think
also spend some time reading posts aimed at new people, the recent posts by other new people in the main message board, the post and subsequent discussion will help you understand life with MC, and how to get your wellness back.

happy reading, happy healing

[tex]

Jan,

Most doctors do not realize that some celiacs require 6 months to a year or more of gluten challenge before they accrue enough small intestinal damage to reliably rule out celiac disease. Many believe that 4–6 weeks of eating gluten is sufficient. That short period is only sufficient for fully mature cases where a GF diet was only trialed for a few weeks or so. Most celiacs will test negative with such a short challenge period if they have been following a GF diet for at least a few months.

The problem with teasing your body with small amounts of gluten is that this will guarantee that your immune system will stay at the maximum level of alertness (looking for gluten) and even if you have no clinical symptoms, it will guarantee that a chronic state of inflammation will be maintained. The existing damage to your intestines can never fully heal under those conditions. Whether or not this is any better than eating normal amounts of gluten is debatable. All disease begins with inflammation. And chronic inflammation sets the stage for the development of additional autoimmune diseases over time.

I suppose the confusing thing for me at the minute is symptoms regarding stomach seem to be much improved even when eating a normal diet. All very confusing

I understand. No one wants to get serious about rigid diet changes unless they believe that they absolutely have to. I was very lucky. MC presents in many different ways. I was able to ignore my symptoms for years, but when the disease finally decided to get serious about disrupting my life, my symptoms became so severe and unrelenting that I had no choice — I couldn't live like that. It was existing, not living. And most other members here didn't have the luxury of debating whether or not they needed to get serious about treating the disease — the seriousness of their symptoms decided for them.

It's your body, so it's your call. We have many members who join, read about the rigid diet we follow and decide, "Hey, that's not for me. That's no fun at all". So they stop posting and lurk here for 3 or 4 years, taking drugs or whatever they have to do to get by, until their symptoms finally become so unbearable that they can't tolerate them any more and then they begin posting again, ready to try the diet.

Most people want to believe that a so-called "normal" diet is a healthy diet, (and most doctors and other "official" health "experts" even mistakenly promote that misconception). But gluten is toxic to your body. In fact, research shows that no one can completely digest gluten, and furthermore some of the undigested peptides in gluten cause adverse effects in the intestines of everyone who eats it (not just celiacs — everyone). The GF diet is a much healthier diet than a diet that contains gluten, and this is true for everyone, not just for celiacs. If you do your part to keep all traces of gluten out of your body, it will reward you with a longer, happier, healthier life. We will be happy to try to help in any way we can, regardless of what you choose to do, but with that many close relatives who are obviously sensitive to gluten, the handwriting is on the wall. Isn't it?

You're very welcome,
Tex

[janhsmn]

Thank you both for your continuing replies, there is some interesting information on there. One good thing for me is I am an expert at gluten free for coeliac as my sister was a mess when she was diagnosed so spent a lot of time sorting it out for her. My doctor has recommended coming off each medication one after the other, as otherwise she says I wont know what is causing any problems so that is where I am at now. Am going to go back gluten free and see what happens.

Another quick question, apologies, but I used to use almond milk as a substitute for cows milk, is that ok or another nono.

Gabes I have tried to find this, but no joy could you point me in the right direction.

I have drafted some info about an eating plan for the early stages of healing for new people - it is a work in progress but please read it and see what you think

Thanks once again[/quote]

[Gabes-Apg]

Jan
your doctor is on target, making any changes (either adding in or taking away) medication / food etc is best done one at a time.. A good idea is to keep a bit of a journal and keep notes.

what you may see in 'MC world' something that is ok for one, may not be ok for another. There is a bit of trial and error. Some here use almond milk, some use coconut milk, some use rice milk, some do home made nut milk... with any product, check the ingredients

Here is the link - it is a "baby in its infancy stages" at the moment...
have a read and let me know if it makes sense!! http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22318

[tex]

My doctor has recommended coming off each medication one after the other, as otherwise she says I wont know what is causing any problems so that is where I am at now.

I agree that in your current situation that's the best way to go about it. But please be aware that if you are reacting to more than 1 of your medications you may not notice any improvement until you stop taking the last one that is causing problems. That's the way it typically works for food sensitivities, at least.

Most of us are able to tolerate Almond Milk just fine, even if we are cannot tolerate the nuts themselves. However please note that some people cannot tolerate the gums used in Almond Milk and other cow's milk substitutes, this especially applies to those who are sensitive to soy because most of those gums are derived from legumes.

Best of luck with your treatment program.

Tex