Hi there,
My name is Alice and I live in Australia. I just discovered this site yesterday and have been reading through it, getting inspired to heal through diet.
This year has been a rough one for me (well, for everyone, no ;) ). On the tail end of lots of anxiety brought on by the stress of having three children in two years (one then twins) and two traumatic losses prior to these, I contracted Ross River Virus in March this year. This is a mosquito born virus here in Australia which causes inflammation in the body and many many symptoms, from acute joint pain, to muscle aches, chest pain, coughs, anxiety, fatigue, brain fog, red, sore eyes, headaches...the list goes on and on.
Anyway, after an initial two months of bad symptoms and barely being able to walk without pain some days, I started to feel a lot better. I didn't go down the route of anti-inflammatories like many do, but rather took herbs from a naturopath, supplements, slept as much as possible with 3 young children, took Epsom salt baths etc. Many of the symptoms I had sent me to my GP worrying I had something else (chest pain, heart palpitations etc) as well, but everything always came back clear, it was just the Ross. In July I had a week or so of loose bowel movements (which resolved by itself) and quite a bit of abdominal pain and was anxious it was bowel cancer (I tend towards health anxiety, which got way worse with the Ross River) and I went to my GP voicing my fears. She said it was highly unlikely, but she said she'd do some tests, one of which was a Fecal Occult Blood Stool test. All the other tests (including an abdominal ultrasound, which just showed a benign ovarian cyst) came back normal, except one of the three occult blood tests came back positive, so I had to have a colonoscopy as a result. I had the colonoscopy in early July and everything looked normal. They found a polyp, which they removed, but it was luckily Hyperplastic. They did however find some microscopic inflammation on the biopsies of the right and left colon. The exact wording was this: "There is a mild increase in intraepithelial lymphocytes in the surface epithelium, without associated epithelial degenration. There is a slight increase of inflammatory cells in the lamina propia, including scattered eosinophils. No granulomas or parasites are seen. The subepithelial collagen layer is not thickened. There is no evidence of dysplasia or malignancy." The comment from the Doctor was: "The pattern is a mild colonic lymphocytosis. The changes are milder than usually seen in a typical lymphocytic colitis, and this may implicate medications as a cause....(it lists them). Some cases are asymptomatic and of uncertain significance." On the phone consult afterwards the specialist asked if I had watery diarrhea and I said no, so he said it was of clinical insignificance then.
Now, at the time I didn't have any symptoms any more and I assumed that this slight inflammation was from the Ross River, which seems to get into everything! Some people in a group O am in have had gut issues with it too. Fast forward six weeks, a few days after my 39th birthday (and a bit too much wine on the day and quite a bit of gluten too) and I started getting loose bowel movements. I've had this before, if something I eat irritates me, or I am really stressed, so I didn't worry too much. I also felt very tired, my eyes started going red and dry and I had sore joints again, all of which are symptoms of the Ross River, so I assumed I was having a flare up of that. (I have since read that these are also symptoms of MC, so who knows...I don't know what is what these days.) I also assumed I had a bit of gastro, as my 5yr old had had some mild gastro a few days earlier and my husband also had a bit, but then it didn't stop and it got worse. After about two weeks of needing to go 2-4 times every morning and sometimes having lots of urgency and some explosions, I went to the GP. I couldn't get into my usual one, so saw whoever I could. She said to take a probiotic and psyllium to soak up the water and treated it like IBS. I started doing that. She also said to avoid too much fibre. I started to do that and it made a bit of difference, but I was still going more than my normal (which is once or twice in the morning, but without urgency) and I had some really bad days in there when I actually took Loperamide to stop it as I had to go out. I went to acupuncture and it didn't help, Bowen Therapy, the same. I meditated etc, but was getting more and more stressed about it, which obviously made it worse. A week later I went back to my usual GP and she ran some more tests, which were all normal. I asked her if the microscopic inflammation could be causing it and she said that was what she was looking for, by ordering a caprotectin stool test. The test came back as normal, so she wasn't inclined to say it was from that, but she also wouldn't say it was IBS (I had read however that calprotectin levels do not necessarily increase with MC, so I didn't have much confidence in her belief). She just said if it didn't improve, I could see a specialist. No one was very worried about it except me. She also said to go onto a very bland diet to help the colon heal with no gluten or dairy. She wanted to test for Coeliacs too, but I haven't had much gluten for 7yrs (though I relax here and there), so I knew it would be negative (a test in July was negative, because I couldn't do the gluten challenge....a few days of it and I had more joint pain and brain fog etc). I started doing that and felt some relief, particularly from abdominal pain, but then I'd have a bad day after too much fibre or something else. I went back to the other GP and told her what the colonoscopy report had said and she decided to treat it more as microscopic colitis and she asked if anyone had actually tried to stop the diarrhea, which they hadn't, so she suggested taking Loperamide every day to stop it and to continue with the psyllium and probiotics. I did this and started with two 2mg pills a day, one in the am and one in the pm. Within four days I had normal, formed stool with little urgency and only twice. Then I went down to one 2mg tablet in the am, as I felt I was started to get constipated. This seemed to work and at the same time after lots of reading, I started the Low Fodmap diet and bought a Hypnotherapy app also from Monash University, as I wanted to tackle it from all angles.
I felt really good for about five days last week and so I decided to experiment with some food. I had a coffee on Thursday and it did not aggree with me and sent me to the loo in under 30mins (no D luckily). Then I had an ice-cream one day at the beach with my family. I'd also decided to try and taper off the Loperamide, as the GP had not told me how long to stay on it. She just said to taper off slowly. I thought I was ready. After a few days of eating a few things I shouldn't have and taking only half a tablet, I started getting abdominal pain again and the feeling like I was going to have D, but didn't. On Saturday I had looser bowel movements again and started to freak out. I went back to one tablet, but still had a few food items over the next few days that I shouldn't have. On Sunday night I really wanted a glass of wine (organic, preservative free sparkling) and thought F it, I'll just have it and see what happens. My husband and I were enjoying the wine and Netflix and I ended up having 3 glasses. The next day I had terrible abdominal pain and decided that wasn't worth it.
Anyway, now I am unsure what is happening. I have made an appointment with a specialist, as I want to know if the "mild" inflammation I have could be causing this. Though, I am not sure if it is worth me spending the money, as I don't want them to just prescribe Budesonide. I went back to my Naturopath yesterday and she is wonderful. She has another lady in her 60s with MC, who is almost healed via diet alone. She made me feel more positive. She said I just need to heal my gut and that it is a slow process.
I guess I am writing so much to give all the details and see what you think. Is my "mild" version still MC? Or could it just be from the Ross River? My immune system is obviously compromised at the moment because of that virus. Interestingly though, an endoscopy last year showed intraepithelial lymphocytosis in my Duodenum too, so perhaps I have had this for a while. I've also had on and off abdominal pain, which is sometimes triggered by eating, but often lasts all day in varying degrees (mainly down the left side, but also right side and up across the top) since the beginning of the year and all investigations have shown nothing. I now wonder if it was this, particularly as the worst spot is on my lower left side where the colon is.
I am currently following the advice here - no gluten, dairy (I had still been having butter up until yesterday), soy (I've been having almond milk for the past three weeks), low sugar, no caffeine, no alcohol, limited cooked veggies, only unripe bananas as fruit (I had been having blueberries and strawberries too, but stopped...can I have these?), psyllium morning and night and I am taking quite a few supplements (Bio Kult probiotic, Metagenics Neuro Calm for anxiety, Orthoplex GIT ImmunoBiotic [Glutamine, Slippery Elm, Pectin, Saccharomyces cerevisiae], Iberogast, Medicinal mushrooms and since yesterday a supplement with Glutamine, Larch, Zinc, Vit A, Vit D3, Aloe Vera and Boswellia Serrata. I take Epsom Salt baths too and am planning on getting some topical magnesium spray and some more Vit D3. We have chickens and eggs are a staple of mine. I don't think they have aggravated my symptoms, though it is hard to tell now, as I am taking the Loperamide. Nothing has cause D, but some things have cause abdominal pain. Should I stop eggs too? Oh and I have been having tofu and miso soup - is that bad? I've also been having some Kombucha as a "treat" drink, as I miss having a wine sometimes. It is a little fizzy, but not too much. Is it bad? What about almond meal? I use it a lot in baking.
Is mild colonic lymphocytosis the same as MC, or just a milder version? Should I treat it as the same? How long should I stay on Loperamide (I realise it is just a bandaid, but it takes away the anxiety I was feeling surrounding toilet trips). I haven't had any D since starting the Loperamide, but I still go twice most days and I also sometimes get the feeling like I need to go, like a type of pressure, but I know I don't really need to go. It does sometimes worry me that I am about to get some D again. I have had this before though too, months ago.
Thank you if you got through all this. :)
P.S The D started 7 weeks ago and I haven't really had it since starting Loperamide 2 weeks ago.
Newbie and unsure if I have MC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello Alice,
Welcome to the group. I'm not a doctor, but my opinion is that you have at the bare minimum, paucicellular lymphocytic colitls, and most probably full-fledged lymphocytic colitis (since you qualified for a diagnosis of duodenal entraepithelial lympthocytosis). Here are my thoughts and impressions, after reading your post:
Basically, entraepithelial lympthocytosis has almost exactly the same diagnostic criteria as lymphocytic colitis (LC). Most of us who have LC also have small intestinal involvement. And your doctor is correct, the calprotectin level may or may not be elevated with microscopic colitis (MC), so it's only useful for differentiating other IBDs, such as Crohn's disease, from MC.
The main problem with blueberries is that even though they may have anti-inflammatory properties, they are a high-fiber item, so they can be a problem while we are in the recovery (healing) stage. Likewise, strawberries are best left for after we are in remission, because we can tolerate much more fiber when we're in remission.
The secret (if there is one) to healing with diet changes, is to never, ever cheat. Especially with gluten You say you have been mostly gluten free for 7 years. But if you cheat occasionally, gluten antibodies (anti-gliadin antibodies) have a half-life of 120 days, so any exposure to gluten will set your healing back by at least a month or two, maybe more. So if you cheat once or twice a month, you might as well be eating gluten, because your gut will never heal, anyway. By contrast, antibodies for most other food sensitivities have a half-life of only 5 or 6 days, so their levels will decay much faster.
Still, if you are regularly eating any food to which you are sensitive (your immune system produces antibodies), that can prevent you from ever reaching remission. IOW, we have to avoid all of our food sensitivities (at the same time) in order to reach remission. And that includes medications and supplements. For example, you're taking so many supplements that you might find that if you just cut them all out, you might be fine. I live on a very limited diet, so I take quite a few vitamins and minerals. But I've been in remission for over 15 years. Most of us cannot tolerate many of the vitamin supplements in general, while we're trying to recover from a flare. The fewer items we put in our mouths, the faster we tend to recover. After you're in remission, you can test all those supplements (one at a time, for three days) to see if you can tolerate them, before adding them back into your diet.
Loperamide is generally safe to use as often as needed, as long as you don't take too much and cause constipation.
Because it's made with soy milk, most of us have to avoid tofu. If we're sensitive to soy, then we're sensitive to any products derived from soy, even trace amounts.
Note that this is just my opinion, and we're all different, so some or all of this may, of may not, apply to your case. Again, welcome aboard. I hope that this helps.
Tex
Welcome to the group. I'm not a doctor, but my opinion is that you have at the bare minimum, paucicellular lymphocytic colitls, and most probably full-fledged lymphocytic colitis (since you qualified for a diagnosis of duodenal entraepithelial lympthocytosis). Here are my thoughts and impressions, after reading your post:
Basically, entraepithelial lympthocytosis has almost exactly the same diagnostic criteria as lymphocytic colitis (LC). Most of us who have LC also have small intestinal involvement. And your doctor is correct, the calprotectin level may or may not be elevated with microscopic colitis (MC), so it's only useful for differentiating other IBDs, such as Crohn's disease, from MC.
The main problem with blueberries is that even though they may have anti-inflammatory properties, they are a high-fiber item, so they can be a problem while we are in the recovery (healing) stage. Likewise, strawberries are best left for after we are in remission, because we can tolerate much more fiber when we're in remission.
The secret (if there is one) to healing with diet changes, is to never, ever cheat. Especially with gluten You say you have been mostly gluten free for 7 years. But if you cheat occasionally, gluten antibodies (anti-gliadin antibodies) have a half-life of 120 days, so any exposure to gluten will set your healing back by at least a month or two, maybe more. So if you cheat once or twice a month, you might as well be eating gluten, because your gut will never heal, anyway. By contrast, antibodies for most other food sensitivities have a half-life of only 5 or 6 days, so their levels will decay much faster.
Still, if you are regularly eating any food to which you are sensitive (your immune system produces antibodies), that can prevent you from ever reaching remission. IOW, we have to avoid all of our food sensitivities (at the same time) in order to reach remission. And that includes medications and supplements. For example, you're taking so many supplements that you might find that if you just cut them all out, you might be fine. I live on a very limited diet, so I take quite a few vitamins and minerals. But I've been in remission for over 15 years. Most of us cannot tolerate many of the vitamin supplements in general, while we're trying to recover from a flare. The fewer items we put in our mouths, the faster we tend to recover. After you're in remission, you can test all those supplements (one at a time, for three days) to see if you can tolerate them, before adding them back into your diet.
Loperamide is generally safe to use as often as needed, as long as you don't take too much and cause constipation.
Because it's made with soy milk, most of us have to avoid tofu. If we're sensitive to soy, then we're sensitive to any products derived from soy, even trace amounts.
Note that this is just my opinion, and we're all different, so some or all of this may, of may not, apply to your case. Again, welcome aboard. I hope that this helps.
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 Tex,
Thank you so much for replying to me and responding to my queries.
I think you are right re the supplements - I am taking a lot. I tend to get very scared and try and throw everything possible and any "ailments" I have, thinking 'the more the better', but I can see that like many things in life, less is actually more. I will stop them today. Can I still take a Vit D3 in the healing stage? I discovered last night I still have some topical magnesium in the house, so started using that again.
As for the gluten, I have definitely been relaxed with it. I started it as I'd had two miscarriages (one very late) and I had read it could play a role in it. When pregnant with my eldest I experimented with introducing it again (as I felt confident the pregnancy was going well, silly time to experiment, I know) and it made my arms itchy. No digestive issues though. It took me months to work out it was the gluten. Then I went off it again, but every now and then would eat it and wasn't concerned with trace amounts in sauces etc or cross contamination in our house (toaster etc). After a few years it seemed it was only wheat triggering the itchiness and the past year, I've had beer and I do occasionally indulge in one of my husband's biscuits or sometimes eat it out when there is no option. So, I have definitely been ingesting it regularly up until a month or so ago. :( I've been tested for Coeliacs twice, once about 7yrs ago and once this year, but both came back normal, as I hadn't been eating much gluten. On the Endoscopy report it said that in 10% of cases, the duodenal lymphocytosis is due to early Coeliacs and I have also read that 30% of people with MC have coeliacs, so I am a bit concerned about that and feel I should do a proper test one day (not now), though I really don't think I could do the gluten challenge ever.
I will also avoid all soy for now and eggs. I really want to heal. In the suggested diet plan, it says to eat animal fats. I find fatty food a trigger, so have been avoiding chicken skin etc. Do we need the fats to heal?
Also, how do I know if I have Bile Acid Malabsorption. I read about it in my "research" and got very scared that I might have it, as I feel that some of my movements have been quite yellow (though this does happen in D in general, due to everything moving through so quickly). I freaked out, as it seems something one has to take medication for life for.
One more thing, if things are a bit soft or worse in the morning, does that mean I reacted to something I ate the previous day/night? E.g I had tomatoes in a pasta sauce (vine ripened tomatoes with kale and English spinach leaves from our garden) I made last night and things are worse today. I think it might be the tomatoes.Oh and are Psyllium husks ok, or is the powder better, or none at all? I do find it helps bind everything.
I think I will still see the Specialist to see what they think about this all and in the meantime, try and eat as little variety as possible.
Thank you and I will look through the meal ideas, as I am finding it hard to think of things to eat (despite being someone who always cooks from scratch anyway).
Thank you so much for replying to me and responding to my queries.
I think you are right re the supplements - I am taking a lot. I tend to get very scared and try and throw everything possible and any "ailments" I have, thinking 'the more the better', but I can see that like many things in life, less is actually more. I will stop them today. Can I still take a Vit D3 in the healing stage? I discovered last night I still have some topical magnesium in the house, so started using that again.
As for the gluten, I have definitely been relaxed with it. I started it as I'd had two miscarriages (one very late) and I had read it could play a role in it. When pregnant with my eldest I experimented with introducing it again (as I felt confident the pregnancy was going well, silly time to experiment, I know) and it made my arms itchy. No digestive issues though. It took me months to work out it was the gluten. Then I went off it again, but every now and then would eat it and wasn't concerned with trace amounts in sauces etc or cross contamination in our house (toaster etc). After a few years it seemed it was only wheat triggering the itchiness and the past year, I've had beer and I do occasionally indulge in one of my husband's biscuits or sometimes eat it out when there is no option. So, I have definitely been ingesting it regularly up until a month or so ago. :( I've been tested for Coeliacs twice, once about 7yrs ago and once this year, but both came back normal, as I hadn't been eating much gluten. On the Endoscopy report it said that in 10% of cases, the duodenal lymphocytosis is due to early Coeliacs and I have also read that 30% of people with MC have coeliacs, so I am a bit concerned about that and feel I should do a proper test one day (not now), though I really don't think I could do the gluten challenge ever.
I will also avoid all soy for now and eggs. I really want to heal. In the suggested diet plan, it says to eat animal fats. I find fatty food a trigger, so have been avoiding chicken skin etc. Do we need the fats to heal?
Also, how do I know if I have Bile Acid Malabsorption. I read about it in my "research" and got very scared that I might have it, as I feel that some of my movements have been quite yellow (though this does happen in D in general, due to everything moving through so quickly). I freaked out, as it seems something one has to take medication for life for.
One more thing, if things are a bit soft or worse in the morning, does that mean I reacted to something I ate the previous day/night? E.g I had tomatoes in a pasta sauce (vine ripened tomatoes with kale and English spinach leaves from our garden) I made last night and things are worse today. I think it might be the tomatoes.Oh and are Psyllium husks ok, or is the powder better, or none at all? I do find it helps bind everything.
I think I will still see the Specialist to see what they think about this all and in the meantime, try and eat as little variety as possible.
Thank you and I will look through the meal ideas, as I am finding it hard to think of things to eat (despite being someone who always cooks from scratch anyway).
Re the gluten free thing, people in cafes etc here often ask if you are Coeliac, so they can prep the food properly and I always feel embarrassed when I say no, that they think I am just gluten free as a fad. Particularly up until now, as the symptoms were only itching and lately it seemed to only happen after a few consecutive days of ingesting it, not after a one off time.
Hi Alice,
Yes, while recovering, it's usually helpful to take a vitamin D supplement as long as it's free of any ingredients that might be a problem. Vitamin D is very important for healing, and MC depletes vitamin D and magnesium during a flare.
While fat is good for calories and energy, we can only handle limited amounts of it if we have significant small intestinal damage. So yes, you may have to limit fat intake until after you've healed for a while.
We have to have been following the diet for a while before bile acid malabsorption (BAM) can be effectively treated. IOW, if the diet doesn't bring remission after a reasonable length of time (3–6 months) then a BAM treatment may be in order. But attempting to treat BAM early on is rarely successful.
We can't tolerate citrus fruits (or ascorbic acid) when in a flare, and tomatoes are a citrus fruit, so the citric acid in tomatoes will cause problems for virtually all of us.
Soluble fiber, such as psyllium husks, will thicken diarrhea somewhat, but it does not help healing — it only adds bulk.
Gluten causes cumulative damage to the small intestine. It may take some of us 6 months to begin reacting, but once our damage threshold is surpassed, we will usually be in a full-fledged (long-term) flare for an extended period. On the average, we're at least as sensitive to gluten as the average coeliac, and many of us are significantly more sensitive than the average coeliac. So you shouldn't be embarrassed to ask for coeliac-safe food, because gluten causes the same type of damage to our intestines as it does to a coeliac's intestines. The main difference between us and coeliacs is that we usually have a heck of a lot more food sensitivities.
In the U. S., studies show that at least 50 % of meals claimed to be gluten-free, are not. And this doesn't even consider all our other food sensitivities. Very few of us can eat out without encountering contaminated food. Therefore, many of us rarely, or never, eat out. Eating away from home while attempting to recover is not an option. It's almost a guarantee that we will not be able to successfully recover.
Tex
Yes, while recovering, it's usually helpful to take a vitamin D supplement as long as it's free of any ingredients that might be a problem. Vitamin D is very important for healing, and MC depletes vitamin D and magnesium during a flare.
While fat is good for calories and energy, we can only handle limited amounts of it if we have significant small intestinal damage. So yes, you may have to limit fat intake until after you've healed for a while.
We have to have been following the diet for a while before bile acid malabsorption (BAM) can be effectively treated. IOW, if the diet doesn't bring remission after a reasonable length of time (3–6 months) then a BAM treatment may be in order. But attempting to treat BAM early on is rarely successful.
We can't tolerate citrus fruits (or ascorbic acid) when in a flare, and tomatoes are a citrus fruit, so the citric acid in tomatoes will cause problems for virtually all of us.
Soluble fiber, such as psyllium husks, will thicken diarrhea somewhat, but it does not help healing — it only adds bulk.
Gluten causes cumulative damage to the small intestine. It may take some of us 6 months to begin reacting, but once our damage threshold is surpassed, we will usually be in a full-fledged (long-term) flare for an extended period. On the average, we're at least as sensitive to gluten as the average coeliac, and many of us are significantly more sensitive than the average coeliac. So you shouldn't be embarrassed to ask for coeliac-safe food, because gluten causes the same type of damage to our intestines as it does to a coeliac's intestines. The main difference between us and coeliacs is that we usually have a heck of a lot more food sensitivities.
In the U. S., studies show that at least 50 % of meals claimed to be gluten-free, are not. And this doesn't even consider all our other food sensitivities. Very few of us can eat out without encountering contaminated food. Therefore, many of us rarely, or never, eat out. Eating away from home while attempting to recover is not an option. It's almost a guarantee that we will not be able to successfully recover.
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 Alice,
I’m a fellow Australian who was diagnosed with LC a few months ago. I also have coeliacs (I was diagnosed with that more than 10 years ago). At the time of my LC diagnosis I was already following a pretty strict whole foods (grain free) diet so found it hard to believe that I would need to restrict my diet even further. But I followed the advice from this forum in regard to the stage 1 diet plan and I can definitely attest to it working.
To start with I ate only beef, pork and lamb. Usually minced versions of each just cause it was easier for me. I bought it in bulk and divided them into 250g batches and froze them all. Each meal I’d take out one batch and cook it up with either sweet potato, pumpkin or carrot. That was all I ate. Three meals a day. I’d also have a morning snack of either a banana or stewed apple.
I removed all my supplements (I had been taking quite a few) except vitamin D and magnesium. I ordered a 5000IU dosage of Vit D3 from America (via Amazon I think) because all vitamin D supplements here in Australia have a maximum dosage of 1000IU and that was not enough for me (my blood test results showed I was deficient in vitamin D). Depending on what state you live in you might be able to get some natural vitamin D fairly easily but I’m Victorian and the sun isn’t available enough for me! My magnesium was sourced from ancientlakesmagnesium.com.au I can only tolerate 1mL per day otherwise D returns so I also use Epsom Salts in a bath fairly regularly. They also have topical products but I haven’t tried any of them.
After following that routine for a couple of months I am now doing so much better. No D. No urgency. I’ve even been able to add in a daily cup of Tulsi Original tea (organicIndia.com.au) which is caffeine free and only has the one ingredient (Tulsi leaves). The only other thing I drink is water. No alcohol. No coffee. They were hard to give up but the results have been worth it. And I’ve also been able to add back some coconut products enabling me to “bake”. But I still limit these extras. The basic plan of meat and veg for every meal will be my diet for the foreseeable future. And honestly, my tastes have changed. I now enjoy every meal even though there isn’t much variety.
Oh, I wanted to add that I also thought I might have BAM when I first started but following the above diet has resolved all those issues so I didn’t need to do anything seperate to “fix” it.
And as for coeliac vs non-coeliac gluten intolerance. If you’re eating out (which I’d avoid as much as possible) and you get asked if you’re coeliac, I would just say yes. They don’t need to know the particulars. It is just as important for you to avoid gluten as it is for me.
Anyway, I’m sorry for the essay. Just wanted to encourage you. It is hard and overwhelming and I still have bad days where I feel completely sorry for myself. But I’m getting better and feeling more and more positive. And you can too!
Sarah
I’m a fellow Australian who was diagnosed with LC a few months ago. I also have coeliacs (I was diagnosed with that more than 10 years ago). At the time of my LC diagnosis I was already following a pretty strict whole foods (grain free) diet so found it hard to believe that I would need to restrict my diet even further. But I followed the advice from this forum in regard to the stage 1 diet plan and I can definitely attest to it working.
To start with I ate only beef, pork and lamb. Usually minced versions of each just cause it was easier for me. I bought it in bulk and divided them into 250g batches and froze them all. Each meal I’d take out one batch and cook it up with either sweet potato, pumpkin or carrot. That was all I ate. Three meals a day. I’d also have a morning snack of either a banana or stewed apple.
I removed all my supplements (I had been taking quite a few) except vitamin D and magnesium. I ordered a 5000IU dosage of Vit D3 from America (via Amazon I think) because all vitamin D supplements here in Australia have a maximum dosage of 1000IU and that was not enough for me (my blood test results showed I was deficient in vitamin D). Depending on what state you live in you might be able to get some natural vitamin D fairly easily but I’m Victorian and the sun isn’t available enough for me! My magnesium was sourced from ancientlakesmagnesium.com.au I can only tolerate 1mL per day otherwise D returns so I also use Epsom Salts in a bath fairly regularly. They also have topical products but I haven’t tried any of them.
After following that routine for a couple of months I am now doing so much better. No D. No urgency. I’ve even been able to add in a daily cup of Tulsi Original tea (organicIndia.com.au) which is caffeine free and only has the one ingredient (Tulsi leaves). The only other thing I drink is water. No alcohol. No coffee. They were hard to give up but the results have been worth it. And I’ve also been able to add back some coconut products enabling me to “bake”. But I still limit these extras. The basic plan of meat and veg for every meal will be my diet for the foreseeable future. And honestly, my tastes have changed. I now enjoy every meal even though there isn’t much variety.
Oh, I wanted to add that I also thought I might have BAM when I first started but following the above diet has resolved all those issues so I didn’t need to do anything seperate to “fix” it.
And as for coeliac vs non-coeliac gluten intolerance. If you’re eating out (which I’d avoid as much as possible) and you get asked if you’re coeliac, I would just say yes. They don’t need to know the particulars. It is just as important for you to avoid gluten as it is for me.
Anyway, I’m sorry for the essay. Just wanted to encourage you. It is hard and overwhelming and I still have bad days where I feel completely sorry for myself. But I’m getting better and feeling more and more positive. And you can too!
Sarah
Hi,
Mom is celiac. I'm not. At restaurants I say I am celiac. My personal opinion is MC is much tougher disease than celiac. Mom can eat a lot more foods than I can.
Re: kale. I have to overcook it for hours until it is mushy to eat it. The fiber in the kale may have been the problem. Tomatoes can also be a problem until you get in remission.
Stick to 100% gluten free. Life will be better.
Welcome to the forum!
Mom is celiac. I'm not. At restaurants I say I am celiac. My personal opinion is MC is much tougher disease than celiac. Mom can eat a lot more foods than I can.
Re: kale. I have to overcook it for hours until it is mushy to eat it. The fiber in the kale may have been the problem. Tomatoes can also be a problem until you get in remission.
Stick to 100% gluten free. Life will be better.
Welcome to the forum!
Thanks for responding SKPurcell. Have you just done the diet changes, without any medication? How long did it take you to get to the symptoms you're at now (no D, no urgency)? Are you concerned about nutrition or weightloss?
I'm in Brisbane, so luckily have no shortage of sun. I did request a Vit D test from my GP though and will get the results back tomorrow. In the past they have been low, so I wouldn't be surprised if they are. Sunscreen blocks 99% of Vit D synthesis and well....skin cancer...hence sunscreen. I grew up in the Blue Mts and the sun here is so so so much stronger, even in Winter! I also tend to cover up and avoid it between Oct and March, though now I am relaxing about it, particularly with my kids, after reading about the ill effects of low vit D.
I'm not eating out at the moment, obviously, this has just been in the past. At the moment it feels that I may never eat out again! LOL
Thanks brandy for chiming in. Yes, Kale has given me the runs even at the best of times, so I now cook it really well and only have a few small (we grow our own and I pick the new leaves) leaves, but it could've been that.
I had a telehealth appt with my new GP last week and told her about the bland diet and she said she agreed that I should do it and that it could take months to heal. She was so understanding and helpful and spoke to me for 30mins (bulkbilled!). It made me feel more confident. She also agreed re no supplements, but did suggest a probiotic, so that when I do re-introduce foods, there is some bacteria there to digest them. I had voiced my concern of reducing my gut biome too much if I am only eating a few food items for a while. She said that when you re-introduce foods, you can have some symptoms of bloating etc due to their not being enough of the specific bacteria in your gut needed to feed that food. I have one I've been taking and don't think it upsets me, as I have had some great days while taking it, so will continue to do so.
Last week I read an old post by Jean on the Elimination Diet and felt compelled to start it. I started on Thursday with just rice, chicken, lean beef, white fish, carrots, sweet potato, potato and green beans. Within even a day I felt better. After three days I felt so good and I had no abdominal pain, no urgency and I had more energy and felt happier. I didn't even need a nap on Sunday, which is unusual for me these days. My stool was also very formed and almost verging on constipation, with cracks in it, so I decided I'd take just half a Loperamide tablet the next day. Though on Sunday I had a piece of Salmon for lunch and I made some hot chips (fries) baked in the oven with some olive oil. They were a bit greasier than how I usually do roast potatoes, but I used some paper towel to soak up most of it. That night my husband cooked the roast potatoes and forgot to peel them. Getting the skin off once cooked left me with next to no potato, so I just ate them. I also made a "sweet" rice what was mentioned here in the GF diet plan, with an Almond milk (which I have been having in my Rooibos tea without issues)/Coconut milk mix (it comes together as a mix "Almond Quench" by Australian Own), flavoured with some cinnamon sticks and a few cloves and two teaspoons of coconut sugar. I only ate about 2.5 tablespoons of it and felt it was too heavy on my stomach. My husband (Costa Rican, so arroz con leche is a favourite of his) reminded me that rice pudding doesn't agree with me at the best of times. Whhops.
On Monday I had a lot of abdominal pain again and my stool was looser again, formed, but very soft and I felt so so deflated. I assumed it was the coconut milk and the salmon, which I think is too rich. Though this was after I'd already had a bit of salmon for breakfast! So, the pain lasted Monday and Tuesday, lessening yesterday. After the salmon breakfast, I returned to just rice, potato etc, but then last night I felt some abdominal pain after eating some roast potatoes (not greasy at all) at dinner time and I thought...what the F!? Seriously!? It made me want to cry and really makes me feel like I am never going to heal. Also, my symptoms weren't nearly as bad as some people's here, even at the beginning, and the inflammation I have is supposedly really mild. Why is my body so reactive?! I know that my mental state doesn't help. I had a busy day Monday and Tuesday and I know that stress affects me. Also, I can't stop thinking about this, reading about it, worrying about it and I know that is not helping in the slightest and is probably even making my body more sensitive. I'm also aware that obsessing over this won't help and I don't want to set up expectations of "perfection", as I know that even before this I didn't have "perfect" poos every day, as most people don't. My husband and children certainly don't, it fluctuates depending on food eaten, if sick etc. Also at the moment I am just before my period, so unsure if some of the abdominal pain is related to that and sometimes my period will even trigger loose stools, so I am aware that may happen again. How does one work towards improvement, but not get obsessed with unrealistic expectations and perhaps see issues where there are none?
I have a specialist appointment booked for next Thursday, but after seeing my GP last week I had decided I would postpone it and see if I can reach remission with diet first, as I assume the specialist may recommend steroids, or just give me more things to worry about. I asked my GP if what they had written on the biopsy report meant I had LC and she said that what they had written was honestly what they write when they don't know what they're looking at. When they can see some white blood cells, but not as many as typical LC and perhaps the pattern etc is different of what they see and so they wrote "colonic lymphocytosis". She explained that whenever you are sick with a virus/bacteria, your body will send white blood cells to the area, so it is hard to say what has caused it. I do still believe the Ross River has something to do with it, as the way the virus attacks the body is by tricking the immune system, using it to defeat our body's own anti-viral defence mechanisms. (https://freshscience.org.au/2001/ross-r ... une-system) and trust me, it wreaks havoc in the body. The joint pain and inflammation actually occurs from the body creating it itself such as with autoimmune diseases. Many people actually go on to develop other autoimmune diseases after contracting Ross River. (https://www.labonline.com.au/content/li ... -833562532)
Anyway....I'm going to continue with the Elimination Diet, but I am not sure how the gut can heal in just 2/3 weeks. Is that what is supposed to happen? Or really does the healing take longer, but that is the earliest you can start introducing new foods. I guess that with just two new foods a week, you would still actually be on a very reduced diet for quiet some time....I assume that the healing continues throughout this.
I am also losing some weight still, understandably, because I am eating next to nothing and although I can afford to lose a couple of kilos, I don't want to lose any more than perhaps two more, or then I will be less than I have been since early adolescence. I have weighed an average of 65kg since adolescence, give or take a too (minus pregnancy) and now I am at about 61-62 and I really wouldn't want to drop below 60, but with the normal running around after kids and some light exercise, I am not sure how to avoid that.
I'm in Brisbane, so luckily have no shortage of sun. I did request a Vit D test from my GP though and will get the results back tomorrow. In the past they have been low, so I wouldn't be surprised if they are. Sunscreen blocks 99% of Vit D synthesis and well....skin cancer...hence sunscreen. I grew up in the Blue Mts and the sun here is so so so much stronger, even in Winter! I also tend to cover up and avoid it between Oct and March, though now I am relaxing about it, particularly with my kids, after reading about the ill effects of low vit D.
I'm not eating out at the moment, obviously, this has just been in the past. At the moment it feels that I may never eat out again! LOL
Thanks brandy for chiming in. Yes, Kale has given me the runs even at the best of times, so I now cook it really well and only have a few small (we grow our own and I pick the new leaves) leaves, but it could've been that.
I had a telehealth appt with my new GP last week and told her about the bland diet and she said she agreed that I should do it and that it could take months to heal. She was so understanding and helpful and spoke to me for 30mins (bulkbilled!). It made me feel more confident. She also agreed re no supplements, but did suggest a probiotic, so that when I do re-introduce foods, there is some bacteria there to digest them. I had voiced my concern of reducing my gut biome too much if I am only eating a few food items for a while. She said that when you re-introduce foods, you can have some symptoms of bloating etc due to their not being enough of the specific bacteria in your gut needed to feed that food. I have one I've been taking and don't think it upsets me, as I have had some great days while taking it, so will continue to do so.
Last week I read an old post by Jean on the Elimination Diet and felt compelled to start it. I started on Thursday with just rice, chicken, lean beef, white fish, carrots, sweet potato, potato and green beans. Within even a day I felt better. After three days I felt so good and I had no abdominal pain, no urgency and I had more energy and felt happier. I didn't even need a nap on Sunday, which is unusual for me these days. My stool was also very formed and almost verging on constipation, with cracks in it, so I decided I'd take just half a Loperamide tablet the next day. Though on Sunday I had a piece of Salmon for lunch and I made some hot chips (fries) baked in the oven with some olive oil. They were a bit greasier than how I usually do roast potatoes, but I used some paper towel to soak up most of it. That night my husband cooked the roast potatoes and forgot to peel them. Getting the skin off once cooked left me with next to no potato, so I just ate them. I also made a "sweet" rice what was mentioned here in the GF diet plan, with an Almond milk (which I have been having in my Rooibos tea without issues)/Coconut milk mix (it comes together as a mix "Almond Quench" by Australian Own), flavoured with some cinnamon sticks and a few cloves and two teaspoons of coconut sugar. I only ate about 2.5 tablespoons of it and felt it was too heavy on my stomach. My husband (Costa Rican, so arroz con leche is a favourite of his) reminded me that rice pudding doesn't agree with me at the best of times. Whhops.
On Monday I had a lot of abdominal pain again and my stool was looser again, formed, but very soft and I felt so so deflated. I assumed it was the coconut milk and the salmon, which I think is too rich. Though this was after I'd already had a bit of salmon for breakfast! So, the pain lasted Monday and Tuesday, lessening yesterday. After the salmon breakfast, I returned to just rice, potato etc, but then last night I felt some abdominal pain after eating some roast potatoes (not greasy at all) at dinner time and I thought...what the F!? Seriously!? It made me want to cry and really makes me feel like I am never going to heal. Also, my symptoms weren't nearly as bad as some people's here, even at the beginning, and the inflammation I have is supposedly really mild. Why is my body so reactive?! I know that my mental state doesn't help. I had a busy day Monday and Tuesday and I know that stress affects me. Also, I can't stop thinking about this, reading about it, worrying about it and I know that is not helping in the slightest and is probably even making my body more sensitive. I'm also aware that obsessing over this won't help and I don't want to set up expectations of "perfection", as I know that even before this I didn't have "perfect" poos every day, as most people don't. My husband and children certainly don't, it fluctuates depending on food eaten, if sick etc. Also at the moment I am just before my period, so unsure if some of the abdominal pain is related to that and sometimes my period will even trigger loose stools, so I am aware that may happen again. How does one work towards improvement, but not get obsessed with unrealistic expectations and perhaps see issues where there are none?
I have a specialist appointment booked for next Thursday, but after seeing my GP last week I had decided I would postpone it and see if I can reach remission with diet first, as I assume the specialist may recommend steroids, or just give me more things to worry about. I asked my GP if what they had written on the biopsy report meant I had LC and she said that what they had written was honestly what they write when they don't know what they're looking at. When they can see some white blood cells, but not as many as typical LC and perhaps the pattern etc is different of what they see and so they wrote "colonic lymphocytosis". She explained that whenever you are sick with a virus/bacteria, your body will send white blood cells to the area, so it is hard to say what has caused it. I do still believe the Ross River has something to do with it, as the way the virus attacks the body is by tricking the immune system, using it to defeat our body's own anti-viral defence mechanisms. (https://freshscience.org.au/2001/ross-r ... une-system) and trust me, it wreaks havoc in the body. The joint pain and inflammation actually occurs from the body creating it itself such as with autoimmune diseases. Many people actually go on to develop other autoimmune diseases after contracting Ross River. (https://www.labonline.com.au/content/li ... -833562532)
Anyway....I'm going to continue with the Elimination Diet, but I am not sure how the gut can heal in just 2/3 weeks. Is that what is supposed to happen? Or really does the healing take longer, but that is the earliest you can start introducing new foods. I guess that with just two new foods a week, you would still actually be on a very reduced diet for quiet some time....I assume that the healing continues throughout this.
I am also losing some weight still, understandably, because I am eating next to nothing and although I can afford to lose a couple of kilos, I don't want to lose any more than perhaps two more, or then I will be less than I have been since early adolescence. I have weighed an average of 65kg since adolescence, give or take a too (minus pregnancy) and now I am at about 61-62 and I really wouldn't want to drop below 60, but with the normal running around after kids and some light exercise, I am not sure how to avoid that.
I just wanted to update that today I have felt so much better after sticking to just rice, carrots, green beans and chicken most of yesterday and today. I had a few leftover pieces of potato today at lunch and was fine, so I think either potatoes weren't the issue, or it is a dose thing and I can't have them every day. I also stewed some apples today and had one spoonful after lunch and was fine and another couple of spoons in the afternoon. I'll gauge how I feel tomorrow before having any more.
Another bit of good news is that last week I had a sore throat, which I'd had for a week or so. It is something that has happened on and off with the Ross River and I think it is a symptom of my immune system being in overdrive. Since starting the elimination diet last week it has gone. It lessened each day for a few days until it completely went. I think that is pretty amazing.
Also, I have a question re Loperamide. I have read that it is often the first line of treatment that GPs trial, though I have only found one piece of information that mentions how long it should be taken for (a pdf for clinicians on the Mayo Clinic site, which states that once a drug is found that controls the D, then it should be continued for 6-8wks [I know that isn't true for steroids etc]). Should I take it for that long?
Also, how does it work to actually "treat" (get you into remission) the MC? I understand the mechanism behind it stopping the D (it slows the gut), but I can't see how it could reduce inflammation, yet I have come across at least a few studies or articles that state that the success rate of it is quite high in people for whom it works. How does that work? Or is it that the people who have success on it were lucky enough to have spontaneous remission while on it? I'm just wondering, as it is listed everywhere as an actual treatment.
Another bit of good news is that last week I had a sore throat, which I'd had for a week or so. It is something that has happened on and off with the Ross River and I think it is a symptom of my immune system being in overdrive. Since starting the elimination diet last week it has gone. It lessened each day for a few days until it completely went. I think that is pretty amazing.
Also, I have a question re Loperamide. I have read that it is often the first line of treatment that GPs trial, though I have only found one piece of information that mentions how long it should be taken for (a pdf for clinicians on the Mayo Clinic site, which states that once a drug is found that controls the D, then it should be continued for 6-8wks [I know that isn't true for steroids etc]). Should I take it for that long?
Also, how does it work to actually "treat" (get you into remission) the MC? I understand the mechanism behind it stopping the D (it slows the gut), but I can't see how it could reduce inflammation, yet I have come across at least a few studies or articles that state that the success rate of it is quite high in people for whom it works. How does that work? Or is it that the people who have success on it were lucky enough to have spontaneous remission while on it? I'm just wondering, as it is listed everywhere as an actual treatment.
Hi Alice,
That's good news about feeling better. The diet changes often resolve long-standing issues for many of us. It's much more practical to view your recovery process as a long-term event, rather than a day-to-day treatment. As MC patients, we learn to live day-to-day, but we have to view our progress from a long-term perspective. There will be good days, and there will be bad days. Don't let the bad days discourage you, we all have to deal with random ups and downs. It's your long-term progress that matters the most. Gradually, the bad days will become fewer, and less bothersome, as you heal, until eventually, they will become a rarity. But of course, this varies by the individual, so you might have very few bad days. The point is, don't let them discourage you. The diet works.
Loperamide has no effect on inflammation. Our diet changes resolve the inflammation. But inflammation suppression is a time-dependent event, so many of us use loperamide to reduce (postpone) the diarrhea while the diet does it's job. Loperamide is so popular because it's one of the safest medications available. Most people can safely take up to six tablets or capsules per day (if needed), without problems. It merely slows down motility, to postpone the diarrhea. The main side effect risk is constipation, if an overdose is taken. As our gut heals, a product such as loperamide becomes unnecessary, as the diarrhea will cease, due to the diet. IOW, you can safely take loperamide for as long as you feel that you need it. Base this on your symptoms, rather than on a time schedule. Just remember that it has no healing effect, it merely slows motility.
Tex
That's good news about feeling better. The diet changes often resolve long-standing issues for many of us. It's much more practical to view your recovery process as a long-term event, rather than a day-to-day treatment. As MC patients, we learn to live day-to-day, but we have to view our progress from a long-term perspective. There will be good days, and there will be bad days. Don't let the bad days discourage you, we all have to deal with random ups and downs. It's your long-term progress that matters the most. Gradually, the bad days will become fewer, and less bothersome, as you heal, until eventually, they will become a rarity. But of course, this varies by the individual, so you might have very few bad days. The point is, don't let them discourage you. The diet works.
Loperamide has no effect on inflammation. Our diet changes resolve the inflammation. But inflammation suppression is a time-dependent event, so many of us use loperamide to reduce (postpone) the diarrhea while the diet does it's job. Loperamide is so popular because it's one of the safest medications available. Most people can safely take up to six tablets or capsules per day (if needed), without problems. It merely slows down motility, to postpone the diarrhea. The main side effect risk is constipation, if an overdose is taken. As our gut heals, a product such as loperamide becomes unnecessary, as the diarrhea will cease, due to the diet. IOW, you can safely take loperamide for as long as you feel that you need it. Base this on your symptoms, rather than on a time schedule. Just remember that it has no healing effect, it merely slows motility.
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 Alice,
I’ve been following the strict recovery diet since July now. I’d say it’s been in the last month or so that I felt confident enough to start reintroducing some foods. So I guess that means I was eating very strict for 2 months or so. My specialist wanted me to try budesonide when I was first diagnosed. I was very reluctant to do so cause I hate steroids but my symptoms had gotten pretty bad so I did. Within 3 days my symptoms worsened. The medication definitely did not agree with me. So I’ve been using diet only since then.
I have very pale skin so can get sunburnt within 10 mins of being in the (summer) sun so I too have relied heavily on sunscreen my entire life. And I’ve been vitamin D deficient for a long time because of it. So I now take the supplement and try to relax a little more about getting sun exposure: it’s definitely a balancing act between getting healthy vitamin D and preventing any possible skin cancer risks.
I do take a probiotic. I was hesitant about this when I first started the diet but I knew my gut microbiome was in poor condition so felt it was the right thing to do for me. I use Inner Health Plus (dairy free) and it seems to be fine for me.
My hormonal cycle definitely impacts my digestive system. Around ovulation and then the start of my period I do have D but not as watery as before and without the urgency I used to have. I try not to let it panic me and remind myself that this is simply “normal” for me. But it is easy for my mind to start questioning everything I’ve eaten and wonder if I’ve done something wrong. But it always resolves itself once the hormones settle down again.
Even without a confirmed LC diagnosis the diet would definitely be a good idea for you as food really is medicine and eating this way helps fix so many digestive issues I believe. I don’t have any concerns about weight loss or nutrient deficiencies. I have remained the same weight the entire time. While my diet may be limited in terms of variety i am still eating enough quantity to maintain my weight (my weight barely ever changes to be honest - the only time it ever did was right before I was diagnosed with coeliacs - since then I have remained around 60kg give or take a few kilos which is within the healthy weight range for my height of 170cm). And the food I am eating is real (healthy) food so I should be getting all the nutrients I need. The only thing I was worried about was calcium as I’m strictly dairy free and am not getting any greens yet so I added a calcium supplement a few weeks ago but I didn’t do that until my symptoms settled down and I made sure I found one without any hidden nasties (again, had to source it from America).
My number 1 advice is to keep things simple. Minimal ingredients. Good luck!
Sarah
I’ve been following the strict recovery diet since July now. I’d say it’s been in the last month or so that I felt confident enough to start reintroducing some foods. So I guess that means I was eating very strict for 2 months or so. My specialist wanted me to try budesonide when I was first diagnosed. I was very reluctant to do so cause I hate steroids but my symptoms had gotten pretty bad so I did. Within 3 days my symptoms worsened. The medication definitely did not agree with me. So I’ve been using diet only since then.
I have very pale skin so can get sunburnt within 10 mins of being in the (summer) sun so I too have relied heavily on sunscreen my entire life. And I’ve been vitamin D deficient for a long time because of it. So I now take the supplement and try to relax a little more about getting sun exposure: it’s definitely a balancing act between getting healthy vitamin D and preventing any possible skin cancer risks.
I do take a probiotic. I was hesitant about this when I first started the diet but I knew my gut microbiome was in poor condition so felt it was the right thing to do for me. I use Inner Health Plus (dairy free) and it seems to be fine for me.
My hormonal cycle definitely impacts my digestive system. Around ovulation and then the start of my period I do have D but not as watery as before and without the urgency I used to have. I try not to let it panic me and remind myself that this is simply “normal” for me. But it is easy for my mind to start questioning everything I’ve eaten and wonder if I’ve done something wrong. But it always resolves itself once the hormones settle down again.
Even without a confirmed LC diagnosis the diet would definitely be a good idea for you as food really is medicine and eating this way helps fix so many digestive issues I believe. I don’t have any concerns about weight loss or nutrient deficiencies. I have remained the same weight the entire time. While my diet may be limited in terms of variety i am still eating enough quantity to maintain my weight (my weight barely ever changes to be honest - the only time it ever did was right before I was diagnosed with coeliacs - since then I have remained around 60kg give or take a few kilos which is within the healthy weight range for my height of 170cm). And the food I am eating is real (healthy) food so I should be getting all the nutrients I need. The only thing I was worried about was calcium as I’m strictly dairy free and am not getting any greens yet so I added a calcium supplement a few weeks ago but I didn’t do that until my symptoms settled down and I made sure I found one without any hidden nasties (again, had to source it from America).
My number 1 advice is to keep things simple. Minimal ingredients. Good luck!
Sarah
tex
Thanks for your reply. I'm a bit confused about why Loperamide is listed as a treatment then, when I imagine it would stop working once one stops taking it if no dietary changes are made. I've seen mention of relapse for the steroidal treatments, but not for Loperamide. I think I will try and wean off it soon anyway, as I had a blood test last week and apparently my platelets are a little low. The GP wasn't concerned at all and said they would probably be back up again if we were to test again, but I'm a bit health anxious and went Googling away and found that Loperamide can cause low platelets. Interestingly, I'd noticed a week or so ago that I'd been bruising easily, so it could be related. I always bruise recently, but hadn't been for a while and my platelets have never been low before, even if only a little.
SKPurcell
Thanks for sharing. It sounds like you are doing well. I think my hormones definitely play a part. My period started today and I have some loose BMs. I got some samples of that Tulsi tea the other day, but I think it may be too early to have it yet, as I've been having quite a bit of abdominal pain, so I may stop it for now.
Yesterday I was feeling pretty low. I had abdominal pain pretty much all weekend and I just don't know why. It went away for a few days last week, but returned on Friday and it is really draining me. I can't believe that my gut has become so sensitive, particularly as the inflammation I have is apparently very mild and not what is seen in a typical LC case. Even my GP was a bit shocked on Friday. On Saturday I had about 5 corn chips (just organic corn, oil and salt) and I don't know if that triggered more pain. I also made some gelatin gummy stuff, which I thought would be a good, gut healthy snack (natural grass-fed beef gelatin, almond milk, one Tblsp vanilla extract and 1Tblsp Maple Syrup), but no....I think it made the pain worse. I also had some pumpkin and Hawaiian Sweet Potato (the purple one) yesterday and I am not sure if that was ok, despite being ok with normal sweet potato and thinking pumpkin was a safe food. Yesterday I had one very loose BM and today too and perhaps it is related to my menstrual cycle, or who knows. I ended up postponing the Specialist appointment (supposed to be for this Thursday) till early Dec, to give me time to see if the diet is working and now I am doubting that. I'm worried that perhaps I don't even have LC, as I haven't had that confirmed by anyone and worried it may be something else (despite two GPs not being worried).
I know that stress exacerbates things, but do you think it alone could really amp up the pain again? Last week was much more stressful than the week before (when I felt great on the Sunday), as my mum was away and she usually helps me with the kids a bit. I know the gut-brain connection is huge and it seems the more I think about this (as in trying to find a solution), the more I worry and the worse I get. A few weeks ago I wasn't nearly as sensitive to food as I am now. I've also got more urgency again this week than I did last and I'm having to go right after I wake up. I had one day the week before last when I didn't need to go for two hours after waking and that was amazing.
Also, a yucky question, but I get a bit worried that my BMs look quite yellow to me (not fluro, but yellowish) and I freak out about BAM. I did have more brown ones a couple of weeks ago when I still had more variety in my diet. I'm not sure if they are like they are now due to all the carrot and sweet potato I'm eating, or due to things still moving through me quite quickly.
Sorry....I'm sure you're all sick of reading about people like me freaking out and worrying and not being patient. I love food and it usually provides me with joy, but I just feel like now it is the bane of my life.
Thanks for your reply. I'm a bit confused about why Loperamide is listed as a treatment then, when I imagine it would stop working once one stops taking it if no dietary changes are made. I've seen mention of relapse for the steroidal treatments, but not for Loperamide. I think I will try and wean off it soon anyway, as I had a blood test last week and apparently my platelets are a little low. The GP wasn't concerned at all and said they would probably be back up again if we were to test again, but I'm a bit health anxious and went Googling away and found that Loperamide can cause low platelets. Interestingly, I'd noticed a week or so ago that I'd been bruising easily, so it could be related. I always bruise recently, but hadn't been for a while and my platelets have never been low before, even if only a little.
SKPurcell
Thanks for sharing. It sounds like you are doing well. I think my hormones definitely play a part. My period started today and I have some loose BMs. I got some samples of that Tulsi tea the other day, but I think it may be too early to have it yet, as I've been having quite a bit of abdominal pain, so I may stop it for now.
Yesterday I was feeling pretty low. I had abdominal pain pretty much all weekend and I just don't know why. It went away for a few days last week, but returned on Friday and it is really draining me. I can't believe that my gut has become so sensitive, particularly as the inflammation I have is apparently very mild and not what is seen in a typical LC case. Even my GP was a bit shocked on Friday. On Saturday I had about 5 corn chips (just organic corn, oil and salt) and I don't know if that triggered more pain. I also made some gelatin gummy stuff, which I thought would be a good, gut healthy snack (natural grass-fed beef gelatin, almond milk, one Tblsp vanilla extract and 1Tblsp Maple Syrup), but no....I think it made the pain worse. I also had some pumpkin and Hawaiian Sweet Potato (the purple one) yesterday and I am not sure if that was ok, despite being ok with normal sweet potato and thinking pumpkin was a safe food. Yesterday I had one very loose BM and today too and perhaps it is related to my menstrual cycle, or who knows. I ended up postponing the Specialist appointment (supposed to be for this Thursday) till early Dec, to give me time to see if the diet is working and now I am doubting that. I'm worried that perhaps I don't even have LC, as I haven't had that confirmed by anyone and worried it may be something else (despite two GPs not being worried).
I know that stress exacerbates things, but do you think it alone could really amp up the pain again? Last week was much more stressful than the week before (when I felt great on the Sunday), as my mum was away and she usually helps me with the kids a bit. I know the gut-brain connection is huge and it seems the more I think about this (as in trying to find a solution), the more I worry and the worse I get. A few weeks ago I wasn't nearly as sensitive to food as I am now. I've also got more urgency again this week than I did last and I'm having to go right after I wake up. I had one day the week before last when I didn't need to go for two hours after waking and that was amazing.
Also, a yucky question, but I get a bit worried that my BMs look quite yellow to me (not fluro, but yellowish) and I freak out about BAM. I did have more brown ones a couple of weeks ago when I still had more variety in my diet. I'm not sure if they are like they are now due to all the carrot and sweet potato I'm eating, or due to things still moving through me quite quickly.
Sorry....I'm sure you're all sick of reading about people like me freaking out and worrying and not being patient. I love food and it usually provides me with joy, but I just feel like now it is the bane of my life.
Hi AGM,
Why do you feel that you have a "mild" case? With MC, symptom severity is unrelated to the degree of inflammation, or any other laboratory marker.
The fast motility caused by diarrhea in general often causes a shift toward yellow stool simply because the change to brown coloration is brought about by bilirubin, and that's a time-dependent process.
The tone of your message tells me that you worry much more than normal, and MC is very much affected by stress. So much so that unnecessary stress can abort or postpone a recovery journey, or precipitate a relapse in MC patients who have been in stable remission for years. Stress is definitely not our friend. It appears to be your most significant obstacle to recovery. But as you know, I'm not a doctor, so that's just my strictly unprofessional opinion.
Tex
Why do you feel that you have a "mild" case? With MC, symptom severity is unrelated to the degree of inflammation, or any other laboratory marker.
The fast motility caused by diarrhea in general often causes a shift toward yellow stool simply because the change to brown coloration is brought about by bilirubin, and that's a time-dependent process.
The tone of your message tells me that you worry much more than normal, and MC is very much affected by stress. So much so that unnecessary stress can abort or postpone a recovery journey, or precipitate a relapse in MC patients who have been in stable remission for years. Stress is definitely not our friend. It appears to be your most significant obstacle to recovery. But as you know, I'm not a doctor, so that's just my strictly unprofessional opinion.
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.
A note about Vitamin D....
When ones levels of Vitamin D increase in the body there seems to be some protectiveness about the Vitamin D in that you can stay in the sun longer when your Vitamin D levels are higher in the body without worry about causing skin cancers.
When ones levels of Vitamin D increase in the body there seems to be some protectiveness about the Vitamin D in that you can stay in the sun longer when your Vitamin D levels are higher in the body without worry about causing skin cancers.
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Erica - that’s very interesting - thank you! My Vitamin D levels are now much better that they have ever been and i haven’t gotten any sunburn recently despite sitting in the sun for much longer than I would normally - admittedly it’s not summer sun here yet though. I am now very interested to see how I’ll go this summer and whether I’ll be able to tolerate more sun than I have previously.
Alice - I would recommend not eating or drinking anything “extra” just yet. Save experimentation for a bit further into your recovery. Hormones could definitely be making things worse for you. If you just got your period then you could be reacting to foods that would normally be ok. I’m just guessing here - but I’m a lot more sensitive around ovulation and then during my period. I also have a tendency to over-google my symptoms so I self-imposed a ban on doing that for awhile. It messes with my head too much.
Sarah
Alice - I would recommend not eating or drinking anything “extra” just yet. Save experimentation for a bit further into your recovery. Hormones could definitely be making things worse for you. If you just got your period then you could be reacting to foods that would normally be ok. I’m just guessing here - but I’m a lot more sensitive around ovulation and then during my period. I also have a tendency to over-google my symptoms so I self-imposed a ban on doing that for awhile. It messes with my head too much.
Sarah