unanswered questions

[Hopeful]

So far, 2.5 weeks on a strict elim. diet but I have a lot of questions. Can someone out there offer advice?

1. Tex posted some interesting research on Mesalamine possibly causing D. I have wondered about this. The one time, in 2.5 years, that I was close to remission with my CC, I had tapered back from 2/day Lialda to 1. Sadly, took doc's advice and put it back up. Remission ended. Do you think it's safe to go cold turkey on Lialda, or should I taper off? I am still on varying amounts of Entecort.

2. I am struggling to understand the whole mast cell issue and the role of antihistamines. Can anyone recommend a safe daily level of Allegra? 180mg. makes me loopy. I also have been taking 1/2 benadryl before bed to aid sleep. Can I do that long-term? There's some interesting research on Quercetin's antihistamine effects - I'm trying that.

3. Is coconut safe for most sufferers? I'm avoiding coconut milk and coconut cream because of the added ingredients, but there's a great product called Coconut Manna by Nutiva that's just plain pureed coconut flesh - creamy and delicious. Might this be helpful in the same way that macaroons are only w/out the eggs and sugar??

4. This monday will be my 3 week anniversary on elim. diet. Eating chicken, broth, lamb, venison, pork and small amounts of well cooked carrots, sweet potatoes, winter squash, occasionally potatoes. Can I start provoking my system next week with rice, then eggs?

Thanks so much for your feedback. This forum has been a godsend!

[christinakay]

Hopeful,

I was on the elimination diet for 9 to 10 months before I added any new foods.

That seemed to work for me. I am still trying new foods and this December it will be 2 years since I was diagnosed.

Hope this helps.


Christina

[Gabes-Apg]

1. I cant help you here as I never took Masalamine or entecort

2. Some of us have taken anti-histamines daily for months, even years. recent research has come out that long term use is not the best. A bit like taking entecort, take it, figure out and eliminate the triggers that you dont need the meds.
i cant help you on dosage as Benadryl is not avail in Aus
Some have tried Quercetin, I tried it, it worked great for nose type allergies, did not work for gut reactions
I now use high doses of Vit C, Magnesium and Zinc as a natural balancer for histamine - works fabulously!


3. some MC'ers do ok with coconut, some can not tolerate it. Be cautious of the flesh as it would be quite fibrous. I use coconut oil, water, ice cream, flour with no issues

4. If it was me, i would stick to the elmination diet a bit longer, get some healing happenign before introducing new items. Introduce something too soon and it could set you back near the starting point. Especially if mast cell/histamine is an issue. Get the histamine inflammation reduced first before adding new foods

hope this helps
happy healing

[lisaw]

Hi Hopeful:

I've not taken Lialda, so am not sure if you need to wean off or can just stop. With Entocort, it should be weaned off. That looks to be the 24 hour dose of Allegra. If that is too much, they make a 12 hour that may work better for you. I take a Claritin Redi-tab (24 hour-they also make a 12 hour) most days, and I find a difference in my GI if I don't take it. I was on a nightly Benadry as well, until recently, but have stopped that. I didn't have a problem with it, but wanted to see how I would do without it.

I do not have a problem with coconut, in fact use quite a bit of it, in the form of coconut milk, shredded coconut, coconut oil. I believe even those that have a problem with coconut, are all right with the oil.

Many do fine with white rice from the beginning, so you may want to reintroduce it. I would not reintroduce eggs yet, as many are intolerant. Taking it slow is a good idea, let you body benefit from some healing.

Lisa

[Hopeful]

Thank you to those who responded to my questions - very helpful!

Questions for Christina and Lisa. If I may ask, what did YOU eat on your elimination diet? Do you think it's safe to include rice and potatoes? I really find that I need some safe carbs. Just eating well cooked carrots, sweet potatoes, winter squash. Would you introduce a cabbage family plant? Swiss Chard? I seemed to react to beets, so chard might also be bad. I need a little more variety...

Gabes - I hear you on the coconut fiber. The good thing about the Manna is that it only has 2g of fiber in each tbl. and I only eat 2 Tbl./day - sure makes coffee and tea more satisfying.

Sorry to keep bugging you all, but if you can offer some further guidance, it would be much appreciated!

[lisaw]

I started out on the AIP (Autoimmune Paleo), which removes nuts, nightshades and eggs from regular Paleo. I was losing weight, which I didn't want to do, so added in white rice and potatoes, to get more carb variety. I added almonds back in after several weeks, too. I would stay away from cabbage and Swiss chard.

[Gabes-Apg]

My elimination diet was:
- home made bone broth (based on Lamb and Chicken as Lamb is very cheap in Aus)
- gooey rice
- chicken

this is still my 'go to' meal anytime i am poorly or under high levels of stress.

For the past 4.75 years my staple eating plan has been;
- Sweet potato, potato, carrot, parsnip, cauliflower (all of them always well cooked)
- well cooked protein mostly lamb and chicken or salmon for the first 2-3 years, and I could have eggs
- rice
- lots of home made bonebroth. Veges are cooked in it, eggs are poached in it, soups and stews are made with it

only in the past 6 months since i balanced the histamine inflammation, fixed nutritional deficiencies, got the metabolism working properly, I have added a few more cooked vegetables (zucchini, baby asparagus, pre cooked shallots)

Cauliflower is a good vegetable to consider, high in Vit C

[Hopeful]

It's a bit confusing about the elim. diets. Gabe's is pretty strict, while the AIP Paleo allows things, like raw veggies, that clearly irritate my system right now.

I think that I will stick closer to Gabe's for a while and try eggs in a week or so (we have chickens!). I think that the sheer boring-ness is getting to me and sometimes the sight of another piece of chicken just gags me!. Luckily, I like meat a lot and I'm very good at making bone broths.

So, one more question (for now!). While in this early stage of elim., I'm also starting to slowly taper off Entecort. I'm thinking that maybe now is not the time to do this. Maybe I should take advantage of the meds to help slow down the inflammation process until I see some progress and then start tapering. I'm down to 1-2 BM's a day - not bad - but very loose and still crampy.

I'm a Type A, Take Charge, Get 'er done kind of girl and I need to tamp that down until the healing begins!

[tex]

It's a bit confusing about the elim. diets. Gabe's is pretty strict, while the AIP Paleo allows things, like raw veggies, that clearly irritate my system right now.

The people who designed the AIP diet have probably never heard of MC, let alone had to live with it.

So, one more question (for now!). While in this early stage of elim., I'm also starting to slowly taper off Entecort. I'm thinking that maybe now is not the time to do this. Maybe I should take advantage of the meds to help slow down the inflammation process until I see some progress and then start tapering. I'm down to 1-2 BM's a day - not bad - but very loose and still crampy.

I agree that weaning off Entocort before you are in remission (assuming that it is helping) may be counterproductive. Most people wean off Entocort and hope to maintain remission afterwards. Being in remission is a prerequisite to maintaining remission.

One thing that MC teaches us is patience, and that's presumably a good thing.

Tex

[lisaw]

Hi there, I should clarify, I was not eating everything available to eat on the AIP. It needs to be kept low fiber, no raw fruits and veggies. Paleo is already GF/DF/SF. I was pretty much eating, and still am, lots of protein, cooked veggies, and sweet potatoes, squash, white potatoes, rice and bananas for carbs. How long have you been on Entocort? You should take it slow weaning off of it. To preserve your improvement, it is best to stay on it a minimum of 4-6 months. I have been on it since June (4 months), and am doing pretty well, and am on 1 per day now, and will go to 1 every other day at the end of the month, and continue to work it down.

Best,

Lisa

[Hopeful]

Thanks, Lisa and Tex.

I've been taking Entecort for 2.5 years and never managed to take less than 3mg/day. Also taking Lialda that long.

My original thought with the elim. diet, was that I could start tapering back again to 3mg./day Entecort and completely get rid of Lialda. I really am some better but I'll take your advise and taper more slowly. I guess my "big rush" is to be anti-inflammatory free soon so that I can wait a few months and take the Enterolab tests.

But you're right. Slow and steady wins the race!

[tex]

Hopeful,

You've certainly been using Entocort long enough to begin thinking about reducing the dose. But the point is, you have to have been on a gluten-free, dairy-free, etc., diet long enough for your intestines to have done some significant healing before reducing the Entocort dose, if you want to prevent a relapse of symptoms. Without the Entocort, it often takes 6months to a year (or more) for the diet changes to bring remission, because the gut heals slowly.

One would think that Entocort helps the gut to heal (and that's probably what your doctor thinks), but believe it or not, the opposite is true. While corticosteroids can mask the clinical symptoms, they actually retard healing. It's eliminating the inflammatory foods from the diet that heals the gut, but the healing process takes time.

Is your vitamin D level well up in the normal range? The reason I ask is because according to my research, corticosteroids suppress inflammation by creating a synergistic effect with vitamin D. Presumably, if you don't have an adequate level of vitamin D in your bloodstream, Entocort may not work as well. IBDs deplete vitamin D (and corticosteroids deplete vitamin D), so anyone who has an IBD (including MC), and especially if they are taking Entocort, should be taking enough vitamin D supplement to keep their immune system well-supplied.

Of course, I can't help but wonder if the researchers who find that IBDs deplete vitamin D might be confused, and their research results might actually be confounded by the fact that most patients who were the subjects in those studies were taking a corticosteroid, and that trumped the results of the study. But I'm just speculating here. I have no proof that is what actually happened. It certainly wouldn't be the first time though, that a research project outcome was totally corrupted because the researchers didn't correctly understand what was happening.

Tex

[megamoxie]

According to the fine print that came with the mesalamine I was prescribed, it contained significant amounts of Aspartame (NutraSweet). For me, artificial sweeteners work like laxatives. I believe others here have trouble with them also. It made me feel worse and the fourth daily dose would not stay down, so I stopped taking it (and notified the doctor).

[Hopeful]

You make some good points, Tex.
My vit. D levels are borderline low and I usually supplement with about 5,000 units/day. I stopped during the last few months because I was having trouble finding one with friendly ingredients and, more importantly, was outdoors in summer with a sleeveless shirt for hours every day. Winter's setting in here in central NY, though, and it's time to supplement again. Can anyone recommend a safe source?

I get your point about the Entecort. I will continue with it and with the diet. I will start tapering off the Lialda, though, and see how that goes. It's amazing how the first 2 weeks on the diet you feel such cravings for your favorite foods but during the third week, it becomes much easier! The words of encouragement that I have received from you all have really helped.

Thanks!

[tex]

Can anyone recommend a safe source?

I'm currently using Freeda brand.

Tex