Newly diagnosed with LC, needing some guidance

[lotus_03]

Hello everyone! I am new to this forum and looking for some answers to questions I have.

A little bit about me for context…

I am a 25 year old female diagnosed with Lymphocytic Colitis in August 2024. Shortly after my diagnosis, I discovered this forum and have spent the past few weeks absorbing as much info as I can.

Other than this diagnosis, I have no known medical conditions. I was generally very healthy prior to this. I ate a lot of homecooked meals and tried to avoid processed food, only eating out on special occasions. Although I thought my diet was pretty healthy and diverse, I did eat a lot of gluten (as well as eggs and dairy), which may have contributed to my LC onset. I also had no known allergies or food sensitivities in the past.

Timeline of events:

January 2024 – Symptoms of sudden liquid stools began after returning from overseas travel. Suspected I had eaten something bad on the flight and hoped it would resolve on its own. Noticed it was not going away and began drinking kefir probiotics with much improvement (solid stool, not fully back to normal).

March – Noticed that symptoms were gradually worsening despite the probiotics. Finally went to PCP who ordered blood and stool testing.

April – Tests returned. Negative for everything except slightly elevated calprotectin (223) and positive for IgA deamidated gliadin antibodies. Had already cut out all gluten and was attempting IBD elimination diets with variable success. Was recommended GI follow up, but I was hesitant to pursue more testing.

June – Finally caved and met with GI. Had EGD/colonoscopy with biopsies done in July. At this point I was attempting a “carnivore” elimination diet with only beef, eggs, sardines, salmon, ghee, and occasional lamb – in the hopes of resolving any dysbiosis. BMs varied between liquid stool and small solid stool.

July – Started adding in low fiber veggies with improvement.

August – Results of biopsies came back. Received diagnosis of LC and was recommended steroids and Sulfasalazine. Did not wish to pursue treatment with prescriptions and decided to do more research on this new diagnosis.

Since my diagnosis and learning more through this forum, I have adjusted my diet again with significant improvement. In the past few weeks, I have had many “Normans” (is that what you call them?). I only occasionally have nausea and cramping during BMs, and I’ve noticed they’re only when I consumed a trigger food. My most recent severe flare was due to testing salmon…

My current diet consists of – chicken, ground turkey, overcooked zucchini & yellow squash, jasmine white rice, coconut oil, salt. Also taking a vitamin D3 supplement. I have been sticking to eating everything in soup form to help with digestion for the time being. I have ordered the A1 + C1 panel, as I would like to know definitively what my triggers are moving forward.

Unfortunately, this past week when I began testing lamb and butternut squash, I had inconclusive results. The past few days it seems butternut squash has flared up my symptoms (fluffy diarrhea), so I am putting a pause on any more testing. I have also decided to wean off the chicken and white rice (replacing with turkey and possibly lamb) until I get my Enterolab results back, in case they are causing underlying inflammation for me.

My questions are:

- Is it possible to develop food sensitivities to veggies consumed during active flares? I am concerned that the veggies I was testing during my carnivore phase (zucchini, carrots, yellow squash) have now been “marked” by my immune system, since it seems that beef and eggs were causing me issues during that time. Is it safe for me to still be eating them in my recovery diet?
- Is it better to avoid white rice, even if stool consistency tends to improve with it? I noticed my stool became very well-formed once I added in jasmine rice, and I didn’t notice any negative symptoms while testing it. Until I get my lab results, I won’t know for sure if rice is a trigger for me.
- How can you tell if a new veggie or fruit is a potential irritant/trigger? I’m struggling to understand why butternut squash would cause my symptoms to flare up… It’s making me question if something else I’m eating is behind the inflammation and the squash is just too much fiber added into the mix.
- Since salmon was a definite trigger for me, should I be avoiding all fish?
- Am I overlooking any other triggers?

I have experienced the most success I’ve had in months after finding this forum. I am immensely grateful to this community for contributing such a wealth of knowledge. It has given me hope to keep pushing forward and one day achieve remission.

Thank you for reading such a long post! And thank you in advance for your feedback.

-Leena

[jbrohlr]

Hello Leena and welcome to the site.

My impression on the squash (and other veggies) is that although you may not have an immune reaction to them, your ability to digest them is currently compromised. I would go with the couple of foods that don't cause diarrhea and stick to those for a few months, then introduce other foods one at a time. At this point your gut is pretty sensitive to foods that cause an immune response as well as to foods that irritate your gut or don't digest well. Right now, food variety is not your friend.

The Enterolabs testing is a good idea - cuts down on the guesswork considerably.

Also, please consider what medications / supplements you are taking. NSAIDS (aspirin, ibuprofen, etc) and proton pump inhibitors (PPI's) are notorious for causing(?) this disease. Before my initial flare I was a Diet Coke and aspirin powder addict (so to speak). I believe that bad habit (as well as statins and gluten) is what caused my MC. Fortunately, not long after I went on a restricted diet, my sinus headaches disappeared so the need for aspirin has gone away.

Supplements are a problem in that you could react to the active and/or inactive ingredients. Just keep in mind that even trace amounts of anything that causes an immune response will keep you from improving. I learned that the hard way with soy extracts (they're in everything and go by many names). It's recommended on this site to limit supplements to only what is necessary, in our case Magnesium and D3 are crucial to recovery, some people here appear to have to take B vitamins.

Good luck Leena

[tex]

Hi Leena,

Welcome to the group. To add to what John posted:

- Is it possible to develop food sensitivities to veggies consumed during active flares? I am concerned that the veggies I was testing during my carnivore phase (zucchini, carrots, yellow squash) have now been “marked” by my immune system, since it seems that beef and eggs were causing me issues during that time. Is it safe for me to still be eating them in my recovery diet?

Our immune system doesn't develop antibodies against those vegetables. The problem is, inflammation inhibits the production of adequate quantities of digestive enzymes from the small intestine. So, as John points out, that makes digesting some foods more difficult. The main problem with vegetables (when MC is active) is the fiber, which irritates our already-inflamed intestines. If/when you eat vegetables, make sure they are peeled, and overcooked, so that they are easier to digest, and contain less fiber (most of the fiber is in the peel). After we're in remission for a while, we're able to digest vegetables normally.

- Is it better to avoid white rice, even if stool consistency tends to improve with it? I noticed my stool became very well-formed once I added in jasmine rice, and I didn’t notice any negative symptoms while testing it. Until I get my lab results, I won’t know for sure if rice is a trigger for me.

Although a few of us have problems tolerating rice, it's an uncommon issue. Rice is much safer than the other grains, And glutinous rice (Jasmine rice) is the easiest to digest. As you've found, listening to our body is very helpful, and if you seem to do well on rice, that's probably a correct assessment. If you are having "Normans" while eating rice, it's apparently not a problem food.

- How can you tell if a new veggie or fruit is a potential irritant/trigger? I’m struggling to understand why butternut squash would cause my symptoms to flare up… It’s making me question if something else I’m eating is behind the inflammation and the squash is just too much fiber added into the mix.

Your assessment of the situation is probably correct — If you're peeling the squash and overcooking it (and not overdoing the portion size), it's likely that something else is causing the problem, such as the chicken, because more than a few of us react to chicken. And as John suggests, be careful with supplements — be sure that the vitamin D3 supplement doesn't contain any suspicious inactive ingredients.

- Since salmon was a definite trigger for me, should I be avoiding all fish?

If I were trying to achieve remission, I would avoid all fish while trying to recover. Shellfish, in general, are much safer, if you crave seafood.

- Am I overlooking any other triggers?

You appear to be on the right track, but recovering does take time, patience, and perseverance, because our antibody levels are sometimes slow to decline while our immune system is hyper activated (which it often is, when MC is active).

I feel obligated to point out that some people who have ordered EnteroLab tests recently, have had problems. The lab has moved to Greece, and is set up and ready to begin testing samples, but the last I heard, receiving their accreditation approval, and their operating license in Greece has taken much longer than they had anticipated, and as of a couple of weeks ago, they were still expecting a possible delay of several months. And another problem is that they apparently haven't worked out delivery of the stool samples with the carriers.

One customer advised me that she had sent her sample by UPS, after receiving verification from Doctor Fine himself, but when the sample got to Greece, UPS couldn't deliver it. Consequently, she lost her money (at least that was true as of the date I was told about it). So if you successfully receive a test kit, before you send your sample back to the lab, make sure you verify with the lab that they have a valid way for you to ship it to Greece, so that it can actually be delivered.

Again, welcome to the group, and please feel free to ask anything.

Tex

[lotus_03]

Hello John,

Thank you for your response! Your thoughts on the veggies dilemma is reassuring – I was suspecting that might be the case. I am thinking to go with that plan and just focus on 3 safe proteins and 3 safe veggies, and just maintain that diet for a while to allow healing.

Surprisingly, before my LC symptoms first started, I was never on any medications. Thinking back, I did have a phase a few years ago where I was trying out more vegan foods (including processed foods and more gluten than usual). I eventually stopped it because I developed bloating and a couple patches of skin flaking on my upper lip. This eventually resolved once I returned to my regular diet and started taking a multivitamin. It’s possible that this was a sign from my body that my GI tract lining was becoming weakened by the diet I was trying out.

Additionally, despite my best efforts to manage my stress levels, I do have a hectic personal life. I am also currently in medical school. I believe these factors all contributed to the onset of my condition, but it is helping me to learn more about my body and understand health on a deeper level.

I am glad to hear that your diet helped to alleviate the headaches you were having! It seems that getting back to the basics is not only what our MC/LC needs, but what our body ultimately wants for optimal health.

Right now I am taking a daily 5,000 IU vitamin D3 supplement from Pure Encapsulations. Is this a good choice?

I am considering a magnesium supplement as well, but I’m worried about the side effects of increased diarrhea that some people tend to experience… I am leaning more towards the topical forms.

Thanks again for your help.

-Leena

[lotus_03]

Hi Tex,

Thank you so much for your reply. This is really helpful information.

I haven’t been peeling my zucchini and yellow squash yet, so I will make sure to start doing that now. I was uncertain about the jasmine rice since “rice” is one of the items tested on the Enterolab panel, but as you pointed out, I agree that my gut seems to be tolerating it without issue. I think I will maintain it for now, and focus on replacing the chicken with a safer protein.

The vitamin D3 supplement I am taking (Pure Encapsulations) only has hypoallergenic plant fiber and vegetarian capsule (cellulose) as its other ingredients. Is this OK?

I will definitely stay away from fish then, at least until I am in remission for a while.

Thank you for the update on Enterolabs! This is the first I’m hearing of it, but I will make sure to verify the shipping process with the lab before I send any samples. I hope they are able to resolve the issue soon for everyone.

My diet plan for now is:
- Test for 3 safe proteins - possibly turkey, lamb, venison
- Zucchini & yellow squash - peel, overcook
- Jasmine rice – small amounts
- Coconut oil, salt

Will work on getting the Enterolab testing done and managing the stress levels. I’ll return here if I have any other questions and with updates on the progress.

Thank you again!! It is such a relief to have found this wonderful community.

-Leena

[tex]

Yes, that supplement should be safe. And you appear to be on track with your diet.

Tex

[fredi223]

Supplements are good too, but I believe you can train your immune system to learn what is good and what is not, and doing that through small portions is the way to go. I guess I like the grind, don’t I?

[lotus_03]

Hi Fredi, I like your positive attitude! I’m not too fond of taking supplements if I don’t have to. I’d much rather get my nutrients from eating the right foods.

I definitely take the small portions approach when testing new foods. Starting with 1/4 cup day one, 1/3 cup day two, 1/2 cup day three, so on.. I can usually tell by day 3 if it’s a keeper or not. Hopefully once I’m in remission for some time, I can revisit testing and focus on those generally safe foods the forum recommends.

[lotus_03]

Hi everyone! Just wanted to give a quick update on how things are going. I am already seeing great signs of improvement.

I weaned off the chicken and I’m only eating turkey (from Plainville Farms) as my protein source. I also started peeling my zucchini and yellow squash before cooking them.

For the past 5 days since making this change, my BMs dropped down to 1x per day. They are what I consider normans (fully formed, solid). I even noticed that the amount of stool is less - possibly because my body is absorbing ALL of the turkey, whereas before the chicken was not being fully absorbed due to the ongoing inflammation.

My gut also seems to be very calm and quiet now. I am happy with the improvement and definitely not taking it for granted. I’ve decided to stay on this simple diet and wait a while before testing any new proteins. If that goes well, then I can venture to testing new safe veggies.

Also - in the past few weeks when I was dealing with flare ups, I noticed I have some slight lymph node swelling in my right inguinal area. It feels like the tissues in that area are a bit “congested,” and I’ll occasionally have a feeling of tightness or pinches in my right lower abdomen / right back. I’m suspecting that there is some immune activity going on especially in my cecum / ascending colon area. It is much better now and I hardly have any pain now from it.

Any thoughts on this? Has anyone experienced this before?

Thank you for your feedback.

[tex]

It's nice to see that much improvement already. It definitely implies that you're on your way to healing.

Regarding the lymph node swelling, I had a lot of lymph node swelling that lasted for a year or more before I figured out all the diet changes that I needed to make, but that all faded away after I was finally able to control the inflammation, and begin healing.

Thanks for the update.

Tex

[lotus_03]

Hi Tex - good to know! Hopefully that will be the case for me as well once I’ve done some proper healing for a while. Thanks!

[lotus_03]

Hi all!

Since my last post I’ve had good progress overall, with a couple setbacks..
- Started becoming painfully constipated without the zucchini & yellow squash peels. Added them back in and the normal stools returned within a few days.
- Had an episode of waking up with nausea in the middle of the night, with subsequent loose stools over the next few days. Suspected this was because I ate two large meals too close together one day, and didn’t fully digest the second meal before going to bed (fermenting during sleep). I started eating at least 3 hrs before bedtime to avoid this.

I also realized how important stress is as a trigger for my symptoms. I had an emotional upset recently after eating dinner one night. Needless to say I did not digest that meal well, and it resulted in a flare up which took me almost a week to resolve. I have been very careful since then to avoid stressful situations/conversations. Right now my gut is just too sensitive to it all.

Fortunately, I have had pristine BMs for the past week. I haven’t changed anything in my food list since my last post (turkey, zucchini, yellow squash, coconut oil, jasmine rice), other than eating the zucchini and squash unpeeled. I am using the Cronometer app to track my nutrients, and I estimate that I’m eating around 2,000-2,300 calories daily. For reference, I am 5’ 3” and weigh 120 lbs. I have a few questions about where to go from here.

- My macro ratio is around 10% carbs, 42% protein, 48% fat. Should I adjust this at all? I want to avoid any potential protein poisoning.
- I am getting around 380 mg magnesium from my food according to the app. Do I need to supplement this?
- I would like to gain a few more pounds and have some additional “snacking” food. Turkey has been a staple for me as it is safe and relatively inexpensive here compared to lamb or venison (I have yet to test these). I wanted to try testing sweet potato, olive oil (for more fats), and possibly apple or banana. Thoughts? Any other food or snack suggestions?

I received my enterolab kit as well and am hoping to send it soon.

Thank you!!
Leena

[tex]

You seem to be doing well. Your diet is heavy on the fat, but as long as your stools are normal, that shouldn't be a problem. At that level, you shouldn't have any risk of developing protein poisoning, and the extra fat helps to reduce the risk of constipation.

Yes, if you want to gain weight, the safest way to do that is by increasing portion sizes, in order to increase your calorie intake. Sweet potatoes, olive oil, apples, and bananas should be safe. That said, be careful with the olive oil, because apparently a lot of it is adulterated with cheaper oils these days, and cheaper oil usually means soy oil. You can check the purity/safety of an olive oil brand at the list maintained by the North American Olive Oil Association (NAOOA):

https://www.aboutoliveoil.org/certified-olive-oil-list

Tex

[lotus_03]

Thank you so much Tex. Your advice has been a life saver!

I'll look out for those olive oil brands before trying anything. Hoping to return with good news soon.

[lotus_03]

Quick question - why might sweet potato cause looser stools during the recovery phase?

I was attempting to test sweet potato after having normal stools, but it seems to be causing me to go from bristol 4 to bristol 5 consistency. I know that might not seem like much, but it's a noticeable difference from my recent baseline. So I am wondering if I should hold off on sweet potato? Could it be the starch is more difficult to digest?

Is this a sign that I am not ready to introduce any new foods right now? I was hoping to add at least one more safe veggie.