Newbie and unsure if I have MC

[AGM]

Thanks everyone for your responses and input.

A quick update. So, two weeks ago I stopped trying new foods too early and just stuck completely to my safe foods, which are lean chicken, beef, lamb, pork, peeled red potatoes, white rice, carrot, sweet potato, under-ripe bananas (only one a day at most), peeled, well-cooked apples (only a small serving a day), rooibos tea with unsweetened 4 ingredient only almond milk, peppermint tea and a night time herbal tea blend, which is fine.

Within days all my abdominal pain had gone and BMs had firmed up again and reduced to just one a day without urgency. So, it has been two weeks and I was starting to think about trialling new things, as suggested in the Elimination Diet, which is linked somewhere. Though first I'd really like to get off the Loperamide, so yesterday I decided to take just half a tablet and this morning when I had to go to the loo, I had a bit more urgency and BM was formed and solid, but I could tell it was softer, as it passed very easily. Then some more came that was not solid, or at least only semi-formed. This totally got me down, so today I took one Loperamide tablet again. I am concerned about the Loperamide, as a recent blood test showed I have slightly low platelets and this can be a side effect of Loperamide. My GP wasn't worried. Though, I have had a very stressful week with my dad going in for an unexpected triple bypass surgery due to blocked arteries and a failing heart. He is still in ICU, so the stress hasn't gone yet and my mum's mum died last Sunday too, so it probably isn't a good time to experiment with new foods, or weaning myself off medication ( I do remember Gabe mentioning not doing that when sick, tired, stress, etc). Yesterday I also had a couple of spoons of some healthy jelly/jello that I had made for my dad and the kids with pasture fed beef gelatine and freshly squeezed orange juice and another with blueberry and strawberry juice that I made. It wasn't much, but as I haven't had those things for weeks, perhaps they were enough to trigger things to go through more quickly. I just can't believe how sensitive my gut is still. I would've thought two weeks of no symptoms was long enough to trial things. ??

My question is....how long do you stay on such limited foods once symptom free? And if you are taking some sort of medication (in my case the Loperamide), how do you know if you are really symptom free, or if the medication is just masking some of the symptoms. Obviously my system speeds up again as soon as I reduce the 2mg of Loperamide and I guess this concerns me.

I imagine it is all too soon, but I really had been feeling good, with more energy, no pain, less joint pain. Though I guess I was very stressed last week with the fear of my dad not surviving the surgery, as he was very high risk and then not coming out of it too well either.

Ok, thanks for reading.

[tex]

Hi Alice,

Most of us take at least 2 or 3 months to get to solid remission. A few of us reach remission in about 6 weeks. On the other hand, a few of us take over a year. And most of us have to follow a much more limited diet than you're using. This is just my opinion, but With all the current stress, I wouldn't even consider adding new foods so soon. A low platelet count shouldn't be a significant issue. That's a bit like taking a blood thinner, something I've been doing for 15 years.

That's said, you don't have to take the loperamide. It doesn't promote intestinal healing. You'll heal at the same rate without it. It only helps to control the diarrhea for your own convenience and comfort. It's strictly an option.

I hope this helps.

Tex

[AGM]

Hi Tex,

Thank you so much for your reply, that does help. I guess my impatience was coming through. ;)

I do have a concern about weightloss though, as I am dropping pretty consistently. I am still within a healthy weight range, but I don't want to lose too much more and with next to no fat and none of the bad stuff that usually contributes to not losing weight, I'm not quite sure how to avoid it. Any ideas?

Also, it seems that without the Loperamide, my digestion speeds up greatly, which contributes to the D/loose BMs. Is it normal with MC for digestion to speed up, or is something else, like stress, causing that?

The Loperamide definitely helps me stay calm, as as soon as things get looser, I tend to panic a bit. Within the "normal" healing time frame that you mentoned above and without any medication, how long into that do people usually experience "normans" as you guys call them? I imagine it is probably a gradual thing across those weeks/months. Once this occurs, how long should someone wait to move to stage 2 eating?

[tex]

Rapid transit is common with MC. Some of us experience relatively large amounts of weight loss, some don't. Apparently one's metabolism and many other factors affect this, including our degree of inflammation. The rapid transit and malabsorption of nutrients caused by MC affects weight loss. The change In diet obviously causes weight loss, and the fact that many patients don't feel like eating (or are afraid to eat), also affects weight loss. Some patients gain weight while taking budesonide, some don't.

It's pointless to be overly-concerned about weight loss, because if it's going to happen, it's going to happen, no matter what you do. I remember losing so much weight that sitting in a bathtub was very uncomfortable because I had no padding left on my butt, so my hip bones felt like they were poking against my hide. The best (most effective) cure for weight loss is to carefully follow the diet so that you reach remission as soon as possible. After your intestines heal slightly, you'll once again be able to improve your digestion and your absorption of the nutrients in your food, and you'll stop losing weight, and slowly begin to gain weight again. As to when to graduate from a phase one diet, listen to your body — it will tell you when you're ready. It knows a lot more about your general condition than your brain, or your wristwatch. Complete healing takes 2–5 years (for adults), but most of us reach remission within a matter of months (without medications) Kids usually heal completely in less than a year. As we age, we heal more slowly, but keeping our immune system in topnotch condition reduces healing time.

Tex

[AGM]

Thank you Tex. Reading your replies always calms my racing mind. :)

I am trying to wean myself off the Loperamide so that I can properly guage how/if food is affecting me. I full expect a return of losses BMs, hopefully not D, and am still wondering....how long does it usually take for "Normans" to appear in the healing timeline? Or is that what happens at remission, as in the few months you mentioned before?
I like to know what is "normal", or vaguely what to expect, as I know that if loose BMs reappear once I stop the Loperamide, I am likely to freak out again, feeling like I have gone backwards and made no progress.
Thanks, Alice

[tex]

and am still wondering....how long does it usually take for "Normans" to appear in the healing timeline? Or is that what happens at remission, as in the few months you mentioned before?

Normal BMs is what most people refer to as remission. Most of your symptoms will be gone at that point, but brain fog and fatigue (if you have those symptoms) usually require over two years of healing before they disappear. "Normal" is whatever your BM texture/consistency was before you developed MC (if you have MC).

Tex

[AGM]

Thank you so much for your continued support.

I actually wrote this post the other day and for some reason, it didn't post, so I am going to try and remember what I wrote and do it again....

After three weeks of no symptoms I started introducing new foods two weeks ago. I started with cooked eggs and was fine, then I tried GF oats blended to make some pikelets with egg and almond milk (on my safe list) and was fine, then I tried some brocolini stalks and was fine again. I tried plain yoghurt and yay, fine! Goat's cheese and yay yay yay! Then I decided to make a "dessert" last weekend and I cooked my usual peeled apples, with the idea of making a crumble using some oats and a bit of coconut sugar sprinkled on top. At the last minute I thought I'd try adding some blueberries, but cook them too. Anyway, the crumble was delicious. Though the next morning I had to go twice (after only needing to go once for weeks) and quite urgently. Things were still formed, but much much looser and I could see blueberry skins, just 9hrs after eating them. So, I'm thinking that the blueberries triggered me, or perhaps the oats, as they weren't really cooked (just baked dry for a bit in the oven on top of the already stewed fruit) and definitely whole still. Anyway, I'd already eaten some porridge for breakfast, which probably didn't help, as it is quite fibrous (although I had soaked the oats overnight and was fine with them during the week before). This was all on Sunday morning and by that evening I had abdominal crampy pain again, which I hadn't had for four weeks. Monday morning things were still a little urgent and looser and pain throughout the day. By this point I had realised I needed to go back to my safe foods. The pain felt like I was going to end up with D, but luckily I didn't. After two days of safe food BMs were normal again and without any urgency and just once, though the pain took a couple more days to subside, with none today.

Soooo...I guess I am wondering, is this what I should do every time I react to something? Go back to my safe foods until symptoms subside? Also, when can I then introduce new food again and can I straight away include the foods I'd already deemed safe, or do I have to start from scratch again? Does one get to a point when you're not reacting like that all the time? Particularly to fibre, which I assume was the trigger, or perhaps salicylates in the blueberries. ?? One step forward, a few back?

I must admit I felt quite discouraged again and down, but I am feeling much better today after being able to get back on top of it so quickly. Also, is this kind of reaction an indication that there is still a lot of inflammation there?

[tex]

Hi Alice,

Your main food problem is probably the oats. Most of us are sensitive to oats because the avenin in oats is very similar to the gluten in wheat. Oats is a weaker allergen, so we sometimes have to eat more of it before it begins to provoke a reaction, but sooner or later (usually sooner) it will cook our goose.

Blueberries can be a problem early on, because for their volume, they have lot of surface area, meaning a lot of skin. Most of the fiber is in the skin, and too much fiber (early on) is a problem. But probably the main reason why they they appeared undigested in your stool, so soon, was because you were already reacting to some other food. Goat cheese contains the same type of casein as cow's milk, and so most of us react to it. Test these foods individually, as described below.

Another issue is that you are trying to eat several potential allergens in a short time interval, and in your case, individually, they might be tolerable, as long as you don't overdo them, but when eaten at the same time, or close together, the allergenic effect can be cumulative, and cause a reaction. Going about adding foods this way, you never know which one or ones are the worst problem.

The proper way to test new foods after recovery from a flare is to try one new food at a time, three days in a row, starting slowly and increasing the portion size each day. If you don't react to a food by the third day, that food is probably safe, and you can add it to your diet and go on to try the next.

The main point here is that your gut is still very dodgy after you first recover from a flare. Your gut is not healed just because you are in remission. Intestinal damage from gluten takes 2 to 5 years to heal (for adults — kids can heal in less than a year), so go slowly and carefully, when introducing "new" foods, especially if they are suspicious. That includes things like fiber and sugar. Our tolerance level for them is low while we're reacting, so after reaching remission we have to expand our ability to handle larger amounts of them by increasing the amounts in our diet slowly. This is because our small intestine loses the ability to produce normal amounts of the enzymes needed to digest various classes of food when it's inflamed during a reaction. If the inflammation/flare lasts for a long time, then the intestine has to slowly relearn how to produce enough of those enzymes to digest a full meal. If it runs out of an enzyme before a meal is completely digested, then you will experience the poor digestion and fast transit that you described.

You'll be OK, you just need to slow down a bit and give your gut a break. We don't develop these food sensitivity problems overnight, and we can't resolve all our digestive problems overnight. We have to give our bodies time to adjust to current realities.

To avoid problems when trying to post a message, be very careful that you click in the "Submit" button below. If you accidentally click on one of the other options, the message won't be posted.

Tex

[AGM]

Thank you so much Wayne for such a detailed reply, that really helps.

I forgot to mention that I had introduced everything over 3 days, so I assumed I was ok with the cheese, yoghurt, oats. I did start eating oats every day after the 3 days though, so perhaps it is just a couple-of-times-a-week food for me and I overdid it. What do you think?

That makes sense re the blueberries and surface area.

I also tried kale one day, cooked well and scrambled with egg, but I had stomach pains afterwards, so immediately decided it was too much and I didn't try it again.

Regarding the lack of enzymes, can someone take something yo help with that? I know naturopaths like to prescribe lots of digestive enzymes etc, or is it better to wait for my body to produce them itself?

Also, how do I know what foods are safest to start introducing? I had started to lose more weight than I wanted and that is partly why I decided to start introducing new foods and it did halter the weightloss.

Oh and after a mini flare like this week, howlong should I wait to introduce food again and do I have to go back to zero?

Also, how do I go about things like GF bread? I had a brand I always ate and was fine with, but now I am not sure whether or not to try it, as it has a good 14 ingredients. I am keen to make my own, but am not sure what flours to try and also how to know which flours I am ok with. I usually use a lot of almond meal in baking and I have brown rice flour, fine white rice flour, green banana flour etc. I am keen to get and have some baked things, even just simple pike lets, which i can take as snacks when out with the kids, but am unsure how to go about this. I thought i was ok with the oat ones, but now i am nervous about trying that again. I know people here suggest coconut flour, but I find it very heavy and it triggers heartburn in me.

[Gabes-Apg]

my suggestion
take the introducing new foods REALLLY SLOW

small quantity (no more than 1/3 cup!!) and bigger space between trying things

so far as enzymes etc, while there is inflammation taking additional enzymes is a waste of money, you wont absorb them.
best way is to let the body heal at its own rate!!

good quality meat proteins, amino acids etc,, and safe low inflammation eating plan!
low stress (dont over think, and dont be too keen to add new things)

slow cooked meat on the bone and bone broth have 75% of the amino acids our bodies need.
6 months with bland low inflammation eating plan like we suggest in the guidelines to heal area is the best thing you can do right now

weight stabilisation etc will happen when the body is ready. there is no short cut or quick fix.
it takes months/years to heal (not days)

[AGM]

Thanks Gabes.

Yes, I need to make some bone broth, as I haven't done that for a couple of weeks. I must say I'm not too comfortable with the amount of meat I'm eating though, particularly with so much evidence showing how high meat consumption increases the risk of many diseases and cancer. I've also read about high meat consumption and inflammation, so it is all a bit confusing. I've never eaten this much meat (small portions, but 3 times a day) in my life. I usually only eat it about 4 days a week.

[Gabes-Apg]

listen to your body
(dont overthink sensationalized media articles)

we are not talking kilos and kilos of meat every day

if the meat is well cooked, and one of your safe meats then there is minimal to no risk of inflammation

Life with MC is that we have wipe our 'brains' of previous beliefs etc about foods. it is a big change and it can take time for the mental and emotional aspects of acceptance, embracing this weird world and actually coming to a point of enjoying it (not resenting it)
the retrain of focussing on what you can eat (rather than the things you cant)
retrain of taste buds to different ingredients and cooking styles

if you are having small serves of well cooked veges at the same time as the meat, inbetween you are drinking water etc it is a healthy eating plan.

I have lived on safe proteins and my 6 safe veges as staples for the past 10 years!!
Fruit and salad are rare rare treats for me. I have not incurred any adverse health issues. and despite many mainstream doctors questioning this eating plan and running tests as they are certain i will be deficient in key nutrients, I am fine!

[AGM]

Thank you much Gabes, that is very encouraging to hear.

I do feel that I am eating very healthily and despite only having about 10 ingredients, I know my diet is more varied than millions of people around the world and it is nutrient dense, which is fantastic.

I would like it to be a little less starchy, but I will get there with more veg.

I am wondering about flours and baked stuff, I edited my comment above, but after you had already replied. Would you mind taking a look?

[Gabes-Apg]

my thoughts baked goods / processed items

they are treats - they generally have minimal nutritional benefit!


if you are making home made savoury muffins with meat and safe veges added, then yes these are a great on the go snack/meal to have
I can go weeks and not have any

again this is part of the adjustment in MC world, we spend years sort of reliant on baked goods, so it takes time to sort out eating plan

[AGM]

Ok, thanks.

All my baked goods are homemade, from scratch. I tend to make things like banana bread with almond meal and only 1/4cup of maple syrup as a sweetener and often without even that, as the bananas are sweet enough. I make something at least once a week for the kids' lunchboxes. I guess I am so used to having some too, it is hard to let go of and in Brisbane weather, the greenish bananas I buy ripen so quickly, I often don't even have one of them which I can take as a snack when out for several hours with the kids.

That saying, I tend not to get very hungry between meals anymore. I guess I am more satisfied. Also, my sweet tooth disappeared after a couple of weeks and I don't crave sugar at all anymore, which is great.

What do you think re eggplant? We have some ready to harvest and I am really keen to try it, particularly so it doesn't go to waste (my kids don't really like eggplant) and also because I love it.