Help with nearly reaching full remission please?

[cloud9er]

Hi all,

I’m a newbie Amy, I’m 30 years old from the UK. I wonder if anyone can help me please? I was diagnosed with lymphocytic colitis last spring (2020) and put on Pentasa. I think I am still eating something that is causing me to react, I explain below.

I have been gluten, dairy, soy and egg free for over a year, on the advice of my gastro who taught me that diet controls the disease. I don’t plan to ever eat them again and I’m fine with that. I’ve been beef free for the same amount of time minus one test.

I have been steadily reducing my diet since February 2020. Since January 1st I have been on a rather more strict diet after Christmas food upset my tummy. In January I had a second dose of Budesonide. The sigmoidoscopy after the first treatment showed a healed gut by the way.

I spoke to my gastro back in March, as to me my bowel movements haven’t gone back to normal and I still have bloating, though no pain with slight cramps. I was put on Beta Blockers to limit the gut brain axis. In my opinion they upset my tummy. I finished them on 7th May.

I took out rice on 19th May to which returned my bowel movements somewhat normal but I will return to that below.

I think I am must be reacting to a food that I’m still eating. My diet currently consists of:
Chicken, pork and rarely white fish or salmon.
Parma ham has been my go to snack but I now limit it.
Potatoes cooked in various ways (mashed potato, homemade wedges, roast potatoes, boiled). I wonder if this is where I am going wrong?
Rapeseed oil.
Boiled parsnips and broccoli (I do get a little gas from broccoli but I’m not concerned).
Banana, avocado, cherries and blackberries in a smoothie for breakfast. At the weekends I have been trying cornflakes for breakfast. I’m not sure if the smoothie gives me too much fibre and I’d like an alternative breakfast.
I take osteocare calcium supplements, plus vitamin D and B12 after a blood test in January with my GP showed I was just under the limit.

I drink a blackberry and raspberry cordial which has minimal ingredients, just the juice, sugar and water. It seems to be fine. Coconut milk (either coconut and water or gellan gum in a carton) and honey is the only other thing I can drink except the occasional pg tips or decaf golden roast coffee because I miss them so much. I can’t just drink water.
I use salt and pepper only.

Recently citrus fruit, apple cider vinegar and pineapple seem to upset me, so I have stopped trying. I have been cautious about carrots, they used to be a staple until a couple of weeks ago. The same with olive oil.

I removed white rice and rice milk on 19th May. Initially my bowel movements went back to normal. I think I got too confident and tried a few items that upset me. Said items were apple cider vinegar once, McCains naked chips several days, cornflakes several days and mango twice in a smoothie. Plus tea and coffee on a couple of days.

In the past month I’ve switched from Rice milk, to Tiger Nut milk (which was worse) and finally to coconut milk. I wonder if I have a problem with sunflower oil as I react to McCain’s naked chips which have two ingredients, potatoes and sunflower oil. Sunflower oil is in carton rice milk too.

I miss cereal terribly, but as it is processed I don’t think I can have them. Gluten-free cornflakes and rice crispies by Nestle. Cornflakes seem to give me gas and bloating. Although I’ve always enjoyed simple foods and am a picky eater, I need variety in my diet mentally and emotionally!

I’m wondering if I will need to try a super strict diet with only two or three ingredients perhaps. My stool isn’t what it was before or what I’d like but I go three times or less in a day. Recently with gas because of cornflakes. The colour has changed throughout the year due to bile. My monthly menstrual can upset my tummy a little, as it always has done and I am waiting until the end of the week to see if things change.

I could write a further essay but that’s a rather long summary. With not much more I can take out, I’m wondering what I am doing wrong :(

Thank you for reading,

Amy

[tex]

Hello Amy,

Welcome to the group. Reading your post leaves me with the impression that you've never really found a recovery diet that works, and stayed on it long enough for your digestive system to do some significant healing. For most of us, it takes two to five years for the intestines to completely heal the damage caused by inflammation. Young people heal faster, so at your age, it could be possible that your colon might have healed in less than a year. But I get the impression that you were not symptom-free, so were you actually in remission? A sigmoidoscopy is a very unreliable way to assess whether the colon has returned to normal histology. Your sigmoid colon might not have ever been inflamed, in the first place. But kudos to your gastroenterologist for recognizing the importance of diet for treating MC. That doctor is a precious jewel in the medical world. Of course, it's possible to get to remission much sooner than a year or two, but that requires finding a diet that works, and strictly sticking with it long enough to get results. If you haven't already done so, I suggest you read the newsletter at the following link:

https://www.microscopiccolitisfoundatio ... 479987.pdf

if you can afford to order the stool tests from EnteroLab that are mentioned in that article, the results will eliminate the questions you have about food sensitivities. They will eliminate guessing. Otherwise, trying to critique your diet is more than difficult. That said, more than a few of us react to chicken and certain fish. Turkey would be a much safer choice. The problem with breakfast cereals is that they contain far too many ingredients to be safe for many of us. And if you happen to be sensitive to soy, then most legumes are also a problem, and most gums are legumes.

Anyway, after you read the newsletter, we'll compare notes again, because we should be on the same page then.

Again, welcome aboard. Please post your thoughts after reading that newsletter, and we'll try to get down to more specifics.

Tex

[cloud9er]

Hi Tex,

Thank you for replying, I appreciate it. Thank you also, for providing that link.

In regards to breakfast from the article, I’m not sure I could veer away from a sweet one! Hence the smoothie. I did try rice pudding prior to removal of rice. I would avoid leftovers for breakfast personally. I think I have been making bone broth correctly, I make it in to a casserole though.

Last year I had an initial colonoscopy in January and two sigmoidoscopies in June and September I think. The colonoscopy biopsies revealed inflammation in the stomach and colon. Unfortunately the terminal ileum wasn’t biopsied, but the duodenum instead was and the biopsy was normal. The first sigmoidoscopy showed red ring sign in the colon and anus, and the biopsies showed increased lymphocytes. Then I received my diagnosis. The second sigmoidoscopy showed normal histology.

The colonoscopy I had in 2014, its biopsies showed inflammation in the terminal ileum and colon. That was with a previous gastro by the way.

I have been reading the forum for some months now. I have both of your books too. I thought I was mostly following the stage one diet for the first few months of the year, until I got bored and desperate to try more foods unfortunately. Then I restricted my diet to what it is now and I still have symptoms.

I have been considering a Enterolab test for a while as it would be nice to know for sure what intolerances I have. I have ordered the A1 and C1 test today. I was initially just going to order the C1 panel but it would be nice to know if egg and legumes are a problem, I’m pretty certain dairy and gluten are a problem. I have informed my gastro about the test, perhaps they will research and advise other patients.

Do you know why they don’t test for intolerances to fruit and vegetables?

Amy

[tex]

if you have a craving for sugar, that could be a clue to the source of your problems. I was a sugarholic before my symptoms began. At the time, my work required a lot of hard, physical labor, so I burned a lot of calories most days. Whenever I would run short of energy, I would grab a candy bar, or a sweet roll, and a Coke, and then I would go back to work. But a history of heavy sugar intake can cause leaky gut. And leaky gut is the cause of all food sensitivities. So that makes sugar a predisposing condition for the development of leaky gut, and subsequently MC. Excessive alcohol use can also cause leaky gut.

Another problem caused by excessive sugar intake can be yeast overgrowth. A yeast overgrowth can cause leaky gut. Because it thrives on sugar, a yeast overgrowth will cause us to crave sugar, in order to feed it. If you have a yeast overgrowth, though, your tongue should show evidence of thrush. I also had thrush back when I was initially reacting, so I'm sure I had a yeast overgrowth. And a lot of naturopathic doctors make a lot of money convincing patients to treat A yeast overgrowth, but if we do what we need to do to resolve our MC symptoms, the yeast overgrowth will be resolved automatically, as we resolve our MC symptoms. Specifically, that implies minimizing sugar intake. These days, I don't even put sugar on my breakfast cereal, but after years of minimizing sugar (and no longer having to feed any yeast), the cereal tastes plenty sweet without any sugar. If I drink a soft drink such as a Coke these days, it tastes waaaaaaaaaaaay too sweet.

You must be referring to an endoscopy, rather than a colonoscopy, regarding an examination of the stomach and duodenum. Those can't be reached with a colonoscope, so it's necessary to enter from the mouth, in order to reach those organs. Ordering the A1+ C1 panels from EnterroLab is a very good move. Those results should answer a lot of questions about what is and is not safe to eat at this point. The reason why Enterrolab doesn't test fruits and vegetables is because those items never cause the production of antibodies by our immune systems. That was mentioned in the newsletter. Fruits and vegetables are definitely a problem for us when are reacting, however, because we're very sensitive to fiber when our intestines are inflamed. And the fructose sugar in fruits is very difficult for us to digest, especially when reacting, because it has to be digested by the liver, unlike most other foods (that are digested by the digestive system).

I hope this helps.

Tex

[cloud9er]

Hi Tex,

I was diagnosed with SIBO at the end of 2019. I have reduced my sugar to a smoothie which tends to be 10 g of sugar; honey with water or coconut milk, and the cordial. Do you think that is enough reduction or too much sugar still? I notice the article is rather strict on sugar. Do you ever bake? I’d like to be able to bake again at some point.

You are correct that I also had an endoscopy that day. Forgive the phrase but I had both ends done

How does coconut stand with the intolerance tests, is it considered a fruit?

Whilst I am waiting for the test and it’s results, I do have some questions:
Does anyone have an idea as to why I struggle with pork mince but not with pork steak or fillet? I really enjoy the mince.

Also, I have started the Couch to 5K program (may be UK specific) that helps you to run 5 km in 9 weeks. It has helped my energy levels hugely but I tend to struggle with tiredness days after exercising, I’ve had to repeat weeks a lot and sometimes take a week between runs. Is that an indication of exercise intolerance and is that something other people with MC experience?

I’ve had a couple of lumps in my neck lymph nodes since 2019 that my GP doesn’t seem concerned with, has anyone else experienced these or is that totally unrelated to MC? I developed eczema on my hands last spring too. That could be related to hand washing though. In the UK we were advised to sing happy birthday twice whilst washing our hands

I think I had more questions but I don’t recall them at the moment. Think they might have been related to the stool test but I’ll wait and read the instructions first.

Thanks again,

Amy

[Gabes-Apg]

Re the smoothie, is there any protein in it??
if not, this may explain the fatigue. protein is a much better energy source than the fruit honey and sugar etc

if you continue with the training with the fatigue symptoms it may inhibit healing a bit.
it is great to have goals, but sometimes we have to adjust them a bit during the healing phase

agree with Tex, once you reset the body a bit with the right nutrients, sweet items become too sweet and not enjoyable

another key thing - magnesium is one of the key nutrients that helps with sugar regulation in the body.
the sugar cravings could be an indicator of needing magnesium (chocolate cravings is a known indicator of needing magnesium)

[tex]

Gabes covered most of your questions, so I'll just try to touch on the others. For some reason or other, in the US, the Food and Drug Administration classifies coconut as a treenut, however, it's actually a fruit. Many consider it to have healing properties, and sensitivities to coconut are somewhat rare.

I have no idea why you're sensitive to pork mince, but not whole cuts of pork,unless your pork mince is becoming contaminated with something that causes you to react, while it is being ground. Cross-contamination of meat during slicing or grinding operations is common, unless the equipment is cleaned first

As Gabes pointed out, the immune system uses a huge amount of energy to fight the inflammation that causes MC, consequently, this robs energy that otherwise might be available for other pursuits. We have to give our bodies a break, so that our immune system can do what it needs to do.

Eczema and other skin issues are quite common with MC. There are virtually always symptoms of unresolved food sensitivities. For example, many people have resolved their skin issues by avoiding all dairy products. For others, the problem might be soy. But it also might be due to a detergent or hand soap you're using. Most often, the problem is due either to cross-contamination of your diet with gluten, or the casein in dairy products. The results of the EnteroLab tests should reveal the cause of the problem, if it's due to your diet.

Tex

[cloud9er]

Hi Debs,

Thank you for your reply.

There’s not really any protein that I can have. I found that chia seeds or flax seeds made me go to the bathroom more, plus I wanted the omegas. I don’t want to stop having avocado and banana as I was found to be mildly deficient in potassium in January, it has corrected itself now thankfully, as of my last blood test. It would be nice to be able to have nuts or oats. Almonds gave me painful cramps when I tried them though. I have used the following template for a smoothie in the link below:

https://wellnessbyfood.com/ibd-smoothies/

In regards to the running, I remember reading online somewhere that a lady who had IBD and fatigue controlled her fatigue symptoms by exercising. I gave it a shot myself and it does help with the tiredness/fatigue. That’s the main reason I run, I find that it helps my mental health a lot too!

The osteocare calcium supplements also contain magnesium, zinc and vitamin D. I have a Dead Sea magnesium spray but it irritates my skin a bit as my skin is sensitive anyway. I like using epsom salts in the bath.

Tex,

Thank you for the additional information. I think the eczema is sensitivity to SLS and other hand soap ingredients, I have hives on one hand.

I’m struggling to get hold of meat or poultry sausages over here with just meat and the casing. They would be a good idea for breakfast, plus bacon.


Again thank you both for your help, it is much appreciated. I’ll reply when I get the Enterolab results as I will probably need help understanding them. In the meantime I’ll try contributing to other posts.

Amy

[tex]

Hi Amy,

That sounds like a workable plan. Incidentally, the reason why chia or flax seeds cause increased diarrhea is because of the hulls. A few generations ago, an old home remedy for constipation was flax seed hulls. They're fairly effective as a laxative. I take flax seed oil capsules (and fish oil capsules) every morning for the omega 3 benefits. This eliminates the hull problem, but again, too much oil will cause increased bathroom trips, because it's a good lubricant. We can usually tolerate up to 2 or 3 thousand mgs (when in remission), but I'm sure that our tolerance varies according to the inflammation level of our intestines, so that amount might be too much for someone who is still reacting.

Tex

[Gabes-Apg]

hi again
i am not saying to stop running, more so finding the balance that it is not hindering healing etc.

i think increasing safe proteins will help alot in the long term.

the other thing to keep in mind, MC is not like other IBD's. the sensitivities to ingredients being so varied across sufferers and the effort to attain remission makes it a different demon.
in the early stages of healing, meals/snacks with small amount of ingredients has been proven to work best.
dont stop the avocado / bananas etc but maybe adjust the eating plan to make it easier for the body to get the benefits from those ingredients

for me even 11 years after Dx, and with good healing and remission, i can not do meals with lots of ingredients. it makes me tired and impacts my bowel motions

[cloud9er]

Sorry Gabes, I didn’t realise you had replied!

I must admit that my weight has dropped quite a bit with the running, especially in my lower half where inches have come off (quite nice too). Starting to get worried that I am losing too much though, I usually have the opposite problem so whether it’s my gut not absorbing properly I’m not sure I’m 4 pounds off of my lowest ever weight as an adult. Bmi is 19.9. I’m trying stay at the week I’m on rather than progress running.

I have protein twice a day at least, I’m considering a cooked breakfast.

I’m still waiting to receive the enterolab test kit, I will call when Dallas reaches 09:00. When I get the results I will ask for a consultation with my gastro. They think a company called GENOVA do the same test but I can’t see it on their website. They also sent a report testing Iga in children with gastroenteritis, ‘The object of this study was to determine if stool secretory immunoglobulin A (sIgA) concentrations in children with AGE increase more among participants administered a Lactobacillus rhamnosus/helveticus probiotic compared with those administered placebo.’ Not sure how that relates to enterolab labs test but there you go. Enterolab is not approved by them I’m desperate lol.

Can you bake at all Gabes? In the future the limited number of ingredients for each meal worries me, but my instinct was to do the sane as you say by keeping it simple. This will not be well received but I don’t like bone broth… Perhaps I can make soups and casseroles instead using the liquid?

Tex, I’ve just been diagnosed with ADHD Inattentive type, so I’m grateful that you mentioned the Omega 3 supplement as it’s something I’m considering.

Potatoes are my main carb at the moment with the exception of root vegetables, corn doesn’t seem to like me even though I keep trying. I never thought I’d say I’m getting rather bored of just potatoes.

Amy

[tex]

Any,

The Genova test is basically worthless for our purposes. Many have tried it over the years, but the results have not been helpful at all. To be honest, I'm not sure I would have much faith in any doctor who refused to accept and endorse the results of the EnteroLab tests, because frankly, those tests are the gold standard for determining food sensitivities for MC patients. But remember, that's just my opinion.

Tax

[Gabes-Apg]

with healing i do lots of baking - it is still a treat food not an everyday staple

I have protein twice a day at least, I’m considering a cooked breakfast.

'good option i did this in my early stages of healing. reheat left over veges with eggs, or salmon.
the stew i make i would heat some of that for breakfast
in those early stages i was having protein at least 4-5 times a day

re the bone broth - most definately cook with it. again in my early stages of healing i used to make gooey rice with bone broth, rice and mince meat.
i cooked veges in it. made various meals with the broth as the basis.
super easy in winter, bit harder in summer (at first) now it is my norm. only last weekend i made HUGE pot of broth and have frozen it into smaller portions and now I use that as my basis for cooking

avoid the corn - it is too fibrous. no matter how much you cook it.
best veges for me at first were potato, sweet potato, cauliflower, carrots, parsnips.
(sweet potato and cauliflower are high in Vit C and Vit A. I havent eaten fruit in 11 years and have no issues with vit C as I have it everyday in my veges)

if you are struggling with time, invest in a slow cooker. put meat on the bone, some veges, some of the bone broth to slow cook while you are work. enough for dinner and maybe left over for breakfast the next day.

a good flavouring option is coconut aminos. coconut based savoury sauce.

i used to cook chicken, some veges in broth on a simmer on the stove while I would shower and prepare for work and then eat it for breakfast

once you have your staples and routine sorted it gets way easier. it can take a couple of months to do that, albeit it is worth the effort, these meals are still my staples 11 years on.

hope this helps

[cloud9er]

Hello everyone,

Sorry for the delay! The test kit was delayed in getting to me at customs and then I took around a month to finally get it sent. I have just received the results this morning, so that was a quick turnaround by EnteroLab! I will say that I am very lucky with the results:

Fecal Anti-gliadin IgA 23 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 15 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 8 Units (Normal Range is less than 10 Units) Fecal Anti-soy IgA 8 Units (Normal Range is less than 10 Units)
Mean Value 11 Antigenic Foods 13 Units (Normal Range is less than 10 Units)

Food to which there was no significant immunological reactivity:

Beef Chicken Pork Tuna Almond Walnut Cashew White potato

Food to which there was some immunological reactivity (1+):
Rice

Food to which there was moderate immunological reactivity (2+):
Corn

Food to which there was significant and/or the most immunological reactivity (3+):
Oat

Grain toward which you displayed the most immunologic reactivity: Oat Grain toward which you displayed intermediate immunologic reactivity: Corn Grain toward which you displayed the least immunologic reactivity: Rice


I am a bit confused regarding rice as I removed it from my diet a few or more months ago and saw improvement. In fact I switched to corn. Almond and cashews gave me painful cramping. I was hoping to try oats soon, never mind

Note: My IgA levels were tested on 4th May and came back as normal at 1.20 g/L .

Thanks,

Amy

[tex]

Hi Amy,

I agree, your results appear to be better than most of us. I don't see a result listed for soy, but I assume that if your test result for soy was 10 or above, you'll be avoiding soy and legumes. Regarding your rice result, when we're sensitive to a food, our immune system will usually continue to produce antibodies to that food for a number of months after we remove the food from our diet, because this allows it to continue to search for those antibodies in case we accidentally ingest some of that food. If we do, it will let us know that we made a mistake, by initiating a reaction to the food. During that time, the antibody level to that food will slowly decline, until it eventually reaches the normal level, unless we accidentally ingest some of that food, in which case the level will increase, and then slowly start to decline again. Gluten antibodies are so persistent that EnteroLab can usually detect gluten sensitivity up to two years after we remove gluten from our diet, because the antibody levels decline more slowly, due to the relatively long half-life of gluten (antigliadin) antibodies (antigliadin antibodies have a 120 day half-life, whereas antibodies to most other food sensitivities have approximately a five or six day half-life).

Tex