Suggestions needed on what to eat or NOT eat

[DebE13]

I'm frustrated and tempted to eat some pizza and cookies just because I'm mad. I know I won't but my 16 year old son made the comment that if nothing was working then I should just eat what I want because it doesn't matter anyway. Ah, the less mature and informed opinions of a teen (I'm trying to get him to at least eliminate some gluten from his diet to start with).

Anyway, aside from just giving up eating all together here is a quick recap of the recent me: Dx of CC 4 1/2 years ago. Tapering off prednisone since July. No longer taking prednisone as of today. D came back 4-6x per day at the end of the 10mg dose. Stopped taking cholestyramine last week since the D came back so that's obviously not helping. GF/DF since November and SF/EF & no legumes since mid January. I thought there would be some improvement with the D because of my diet but maybe it's not been enough time.

My typical menu looking back at my log from the past 2 weeks:

coffee w/either almond milk, chocolate almond milk, or coconut milk, sometimes with honey
bananas, applesauce, dried fruits: banana, apricot, raisins, dates, coconut, salsa, mushrooms, tomato
nuts: almonds, pecans, walnuts, cashews, hazel nuts, brazil nuts
rice
potatoes, sweet potatoes
meat: turkey, turkey brats,hamburger, bacon, pork, cod
corn tortilla chips, tapioca bread
olive oil, lawreys season salt, salt, pepper, ketchup, pure maple syrup, cinamon
apple juice, blueberry-pomegranite juice, OJ- all diluted & small quantities
cornmeal, corn chex, rice chex
known problematic foods: carmel corn (forgot about the butter used), bbq kettle chips (looked like it would be ok, but wasn't)

This has been my diet for the past 2 weeks. Aside from the known foods I listed, I can't tell if anything else is bothering me. I know I should try to eliminate the coffee but don't want to (it's one of the last things left that makes me happy). I limit myself to 2 cups per day. I could eliminate everything from the fruit & veggie list except for the banana & applesauce. Maybe eliminate the nuts? I've seen lots of comments about nuts causing problems. I don't notice anything except I can see them undigested in the toilet the next day. Maybe cut out the bacon because of the nitrates? Stop the fruit juices? My goodness there won't be anything left to eat. sigh

Tex- you mentioned in an earlier thread that I may have hyporthyroidsim and I did get some of my notes now. All of the numbers mean absolutely nothing to me and the only explaination I received after all the lab work was that everything fell within the normal range so I have no additional problems. My GI sent me to a rhuematologist in November and her notes included the following:

5/5/11: TSH 0.96, IBD serology negative, CPR less than 0.3

9/2/11: ANA negative, BUN 11, creatine 0.83, GFR 76, AST 11, ALT 12, alkaline phosphatase 36, total bilirubin 0.9, albumin, 4.2, CRP less than 0.3, rheumatoid factor less than 11, TSH 1.39, ESR 4, normal hemogram including differential. Her dsDNA was negative.

6/6/07: horseshoe kidney w/out evidence of complication.

Also in her notes to the GI it included a recommendation of checking the 25-hydroxy vitamin D level & hepatitis panel, but was noted it has been put on hold for now. I was supposed to follow up with a phone call in 2 weeks after the appointment and go back to her a month later but I cancelled them. After that $500 office call, it was recommended I use drops for my dry eye (which I do have) but the eye burning & pain I was complaining about is not related to dry eye and to take OTC sleep meds to counteract the waking up every morning at 3 AM due to the prednisone. Which by the way, since I have decreased and now stopped taking has gone away. I don't have sleep disturbances anymore. I read that the dry eye can be related to low levels of Vitamin A so I'm not sure what to do about that.

The only OTC drugs I've used is Target's generic brand of Claritin. I do see it has lactose monohydrate so I've stopped using that. I also have been taking a vitamin supplement but I believe it is allergen safe as it was recommended by my chiropractor/nutrionist when I did the elimination diet. It has calcium silicate, magnesium stearate, microcrystalline cellulose, and silicon dioxide as the "other" ingredients.

The D has been worse so maybe I'm not giving enough credit to the diet. I am not waking up a night to go to the bathroom. Previously I had literal "running water" sounds in my gut especially if I changed position in bed. That's not back yet. I do have lots of gurgling and drippy noises but not nearly as bad as before. The urgency is back and I can't leave the house until I've used the bathroom at least 3 times in the morning or I'm looking for trouble.

In 2010 I had a blood test done through Immuno Lab that listed reactive foods. Tex, I thought you mentioned that test isn't realiable. ? I don't remember for sure. Some of the foods listed from that test are currently part of my diet so I wonder if I should pay attention to them too. That test has a 1-5 reactive scale and all of those foods were a 1 or 2.
It included: kidney beans, cheese, cinnamon, dates, eggs, garlic, ginger, milk, cashew, onion, paprika, parsley, peach, cayenne pepper, pineapple, pumpkin, rice, safflower, sesame, tomato, vanilla, wheat, and baker's & brewer's yeast.

Any suggestions would be appreciated.

[tex]

I know I won't but my 16 year old son made the comment that if nothing was working then I should just eat what I want because it doesn't matter anyway.

It's tempting to think that way, but trust me, just because we're sick, doesn't mean that we can't get a lot sicker. I had to eat my words more than once, when I thought that I couldn't get any sicker.

If coffee caused you to have to run to the bathroom before MC, then it will still have that effect. Otherwise, it's probably not a problem for you. I was always afraid to used the seasoned salt - I used garlic salt, instead. Less ingredients is always better, with MC.

Bacon is not usually a problem, and some juices are OK, but fruit or vegetable juices that contain significant amounts of citric acid are usually a problem for most us, until we have been in remission for a while. Citric acid meant guaranteed D for me, back when I was recovering. I can tolerate a few nuts, but a lot of them definitely cause problems for me, even today. Most of us tolerate nut butters much better than the nuts themselves.

Dried fruits may be a problem because they usually contain a lot of sugar, (including sorbitol), so they are not only a D risk because they are high in histamines, but they also pose a fermentation risk, because of the sugar.

I can eat hot chilies and many hot sauces without any problems, but for some reason, salsa causes D, (even today). Maybe it's the tomatoes. Or the cilatro. I like it, but it doesn't like me.

Many of us react to tapioca, for some unknown reason. Tomatoes are a problem for many of us, until we are in remission, and of course, that applies to ketchup, also. Pepper can be a problem, too, for some of us.

Your TSH results look fine, but apparently they failed to check your Free T3 and Free T4. My TSH was fine, also, but my Free T4 was below range, which is a marker of hypothyroidism, to anyone except those doctors who are blind to anything other than TSH results.

I read that the dry eye can be related to low levels of Vitamin A so I'm not sure what to do about that.

It can also be connected with MC, as can other eye issues, such as uveitis.

Most blood tests for food-sensitivities check for IgE antibodies, (or IgG antibodies), and those are often useful for classic allergies. They might also be useful if you have mast cell involvement in your intestines. Looking at that long list, the only ones I see that are generally safe, (meaning that most of us could safely eat them), are ginger, maybe cashew, peach, pumpkin, rice,safflower,sesame, and vanilla, and it's certainly possible that you might be sensitive to any or all of those, also, because some of us are. Most of those foods are at least highly suspect for anyone with MC, who is having problems finding a diet that works for them. IOW, they're best avoided, on general principles, if remission is elusive. They can always be added back into the diet later, after remission is in place.

My impression is that you probably just need more time to for your body to adjust, and your intestines to heal. Tapering off prednisone so soon after starting the diet always makes it tougher to achieve remission, because the withdrawal adds a lot of additional stress. I can't keep track of who has tried what, (since, unlike your doctor, I don't have your records in front of me, and my memory is not that good), but have you tried the Pepto treatment? That's another option for getting the D under control faster, in conjunction with the diet.

Anyway, those are some of my thoughts, FWIW.

Tex

[nancyl]

Hi Deb,
So sorry to hear that you are still reacting. I am no expert, but a couple of weeks ago I had a problem for a couple of days and narrowed it down to cashews. They are very high in fiber and fats. Once I eliminated them I was back to normal. When I was reacting all I ate was meat, potatoes, well cooked veggies (nothing raw). The only fruits I had was banana and strawberries in a smoothie made with almond milk. I could tolerate potato chips. I would also eat pancakes and waffles and at first I only used an egg replacer.

Nancy

[DebE13]

Thanks for the input- I'll keep up with the trial and error and time. About how long does it take to find some sort of indication that things are improving when limiting the diet to the meat, rice, and potato? Days, weeks, months? I know there's no magic number and everyone is different but it's easier to get a mind set of what's required in order to succeed, at least for me anyway.

I did try the pepto and there wasn't even the slighest improvement- just black BMs. It seemed almost wrong to eat so many pink tablets in a day but I'm sure my attitude would have been much different if I saw some results.

Coffee was never a problem for me before MC except for bothering my stomach if I had too much. I cut back from 4-6 cups a day to 2 and that seems have helped. I gave it up for 4 months when I did my elimination diet and didn't notice anything.

Do you think the MRT testing would be beneficial now rather than later? Is that a test that can be covered under health insurance and readily performed at local labs?

[tex]

About how long does it take to find some sort of indication that things are improving when limiting the diet to the meat, rice, and potato?

That's a tough question. It only took me about two weeks to see remission after I restricted my diet to those items, but I had already been gluten free for about a year and a half when I finally decided to stop experimenting with other foods, and buckle down to a simple, basic diet, (similar to what Nancy described), so my gut had already had a lot more healing time than yours, at that point.

MRT would almost surely provide some additional food guidelines, but it's another test that probably not many insurance companies cover at this stage of the game. You have to have the blood samples drawn at a local lab or doctor's office, but as far as I'm aware, Signet Labs is the only lab that does the actual test. Mary Beth can suggest one or more local dietitians who are certified to work with the program. You would need to start with the dietitian, because they get a discount on the lab fees, which allows them to offer their services at a discounted price. That way, the test plus a dietitian's services only costs slightly more than the test itself would cost, (if you do without a dietitian's help). I don't know what the odds are, that your insurance might cover the cost - probably not good.

Tex

[MBombardier]

What really stood out to me in your diet is the corn. For me, the way my intolerances played out was gluten, soy (I cut all legumes at this time), corn, rice, then all grains. The last one, because I was asymptomatic, was dairy. Then the icing on the cake was the high-histamine. For you, that would be the dried fruit, which I also noticed you eat quite a bit.

My suggestion, based on my experience, is that you select a basic diet that you think you can eat and stick with it until you see some changes. I would say a few weeks. Yes, it is very boring, but...

I have been in remission for about six months, and if a challenge goes wrong, I go back to the old stand-by of chicken, chicken broth, very soft carrots, and apples/applesauce. I see improvement in a few days. I tried a piece of my husband's birthday cake a few days ago, and my gut is all riled up, likely because of the rice flour, and reacting to things it is usually okay with. I am starting back on the chicken soup tomorrow, and looking forward to it because I know I will feel better soon.

By the way--your son should go out and start his adult life while he still knows everything. My third child will be 17 tomorrow, so I've lived through three 16-year-olds so far. Just let it go. By the time he's 21, he will think you are the smartest person he's ever met, just he did when he was five.

[Lesley]

Nope Marliss. Just that you have learned a lot of what he taught you! That's what happened with my older son. 21, and told me I had been listening to him all along.

[DebE13]

Marliss- thanks for the advise. So you initially reacted at some point to all of those grains? Interesting. I'm afraid that the staples of rice and corn that I've been using may turn out to be an issue but wasn't quite ready to eliminate them too. I guess now it's time, for now. I never gave the dried fruit a though and it's tie to histamines. I wonder about that one too since my major complaint aside from the D is the sinus and eye problems.

After a horrible day yesterday I told myself to finally suck it up and try the few foods route for the next three days to see if there's even a slight improvement. I was so uncomfortable yesterday that I've had it. I've done well so far today in just eating a banana, some turkey, and chicken broth.

[Gabes-Apg]

Deb
as part of the adjustment to Mc Management we have to give our brains and tastebuds time to adjust.. we have just spent most of our lives with a wide variety of ingredients and eating different flavours and cuisines almost every night.

My eating plan is based off 5 safe vegetables, all of the proteins, minimal corn, coconut milk, black coffee,
there are times that you do get a bit bored with the same stuff all the time, and cooking those ingredients a different way can change the flavour a bit.

breakfast i have reheated veges (bubble and squeak) with poached eggs, coffee
snack, cooked chicken with gabe safe crackers - coffee
lunch same veges with chicken or turkey or lamb
snack, pureed apple with calc carbonate powder
dinner, rice protein power with coconut milk OR veges with salmon

due to some health issues over the past 6 months (most of which are histamine related) i havent wanted to introduce new ingredients or vary from the routine, any change in ingredients or even the time i eat the meals has caused reactions (histamine)
eating low inflammation, easy to digest meals is very important, it optimises good digestion and good nutrition absorbtion.
these ingredients have been my staples for 18 months.

Finding your 'safe basics' is important, any time you feel poorly you can revert back to them. MIne is gooey rice and chicken.

Albeit, sticking to a low ingredient base, and repeatative type meals is easy for me, i live alone. I dont have other peoples foods and ingredients around me. I have my lunch at later time so there are not soo many scents of foods that i cant eat.

even in current times, there are people living remotely in countries like Papua New Guinea or Indonesia that their eating plan is only off about 10 ingredients.
they have tea or water, if they live near a river then they have fish, otherwise the main protein is pork, chicken is like a once a year delicacy, rice, and 2 - 3 vegetables what ever grows in their area, and banana's and paw paw. thats it.
it is not until they are adults and travel to a city do they even realise there are other foods out there!
You can imagine their reaction when they walk into a supermarket in Australia!!

it will take time to figure out what works for you, and you may have to do it an ingredient at a time.
it took me about 6 months to figure out what works best.

[draperygoddess]

Hey Deb,

I would agree with some of the above comments, as well. Dried fruit of any variety was a problem for me at first, though I can eat it now in moderation. Just too much fiber, I think. Nuts were also a problem until things settled down. I have issues with potatoes, but that's pretty rare--for most people, they're a "safe" food. Corn itself is fine for me, but I do have problems with corn chips, tortillas, and cornmeal, even if they're GF--I don't know why, but there it is!

Although you're far from feeling great, it does sound like you've made a little progress! Tweaking the diet takes time, and hopefully you'll get a handle on it in the weeks to come. Just keep working at it, don't give up!

[DebE13]

Thanks so much for all of the kind words of encouragemnent and examples from your own diets. I have a place to start now and I'll see what happens in a few days. I was hoping I wouldn't have to go to this extreme because it is down right hard to do but the alternative would be more steriods and that's what I've been trying to aviod for all these years in the first place. It's good to hear that there are success stories out there even though it takes a lot of effort and many bumps in the road.

I'm starting to wonder if corn may be an offender. Are dates considered dried fruit or something that should obviously be avoided? I ate them almost daily as a dessert.

[tex]

Dates are high in histamines, if that's what you're wondering, but another thing to consider is that they are a very potent dose of sugar. Many of us can't tolerate such concentrations of sugar in our diet during the healing stage. It definitely caused problems for me.

Tex

[brandy]

Hi Deb,

Wow, understand your frustration. I found it difficult to get off the Entocourt so can't imagine tapering off with the steroids you were on. I have a lot to comment on so here goes. As a reference I went GF Oct 1, 2011, DF Jan 1 2012 and Entocourt Sept 1, off Entocourt about 2 weeks ago.

Before I was diagnosed, i.e. about 6 weeks b/f my colonoscopy just on my own trial and error I went to eating chicken, cooked green beans, rice, a nectarine that I would peel slice and put in microwave for a minute to cook and I think once and a while applesauce. I ate this for about 6 weeks. Several days after starting this my D went from 7 times per day to only once a day in the morning and also no more pain. It actually wasn't so bad. I was eating a lot, i.e. about every 2-1/2 hours to maintain my weight (I'm a 5'7" female.) I was probably averaging eating a chicken every day and a half, about 2 cups rice per day, about 1 to 1-1/2 cups of cooked green beans etc. Three days before my colonoscopy I started healing, ie. I got soft serve. I believe when Tex was in his initial flares years back he stuck to meat and potatoes for days on end until he finally started getting better. So perhaps consider really narrowing down your diet for awhile. On the plus side I would cook a large portion of green beans and then a large portion of rice and it was easy to reheat on subsequent days. Also during this 6 week I eliminated vitamins, probiotics over the counter supplements and I started folding some of these back once I got "soft serve."

Now for comments on food:

Coffee....I'm not a coffee drinker but I never could give up tea. Pretty much from last March till present I've been drinking tea. It's all over the IBS web sites to give up coffee/tea for D but I could never go there. It was so refreshing to find this website in September and see Tex's words about if you were ok w/ coffee or tea b/f MC you are probably ok with it. Heck, you need some kind of a vice.

Honey....has been iffy for me....I'm using it but sparingly.

Dried fruits.....the boyfriend put some in my Christmas stocking.....they were problematic for me so I havn't eaten any since then.

Nuts.....I'd probably be ok if I ate just 5 nuts but who can eat just 5 nuts? First week of January 2 I had peanuts at a football Bowl Game. There was really nothing else to eat but it set me back two days. Basically I had undigested little nuts and it kind of stressed me out. I revisited nuts yesterday--ate about a cup of raw cashews. They digested better than last time but I still had "soft stool." I"m going to set nuts aside until maybe summer and retry then. I agree that a lot of the posters are eating nuts but I'm guessing they are much further along in the healing process than where I am.

Rice, Quinoa, Corn macaroni, corn tortilla chips......It wasn't until I got off of Entocourt that I was able to figure out that these grains are problematic for me. You just kind of assume rice is "okay." I get extreme dizziness after eating rice, quinoa, and corn macaroni. It freaks me out so much that I have no interest in trying any other grains for now. I'm ok with potatoes and sweet potatoes. In the big picture if I ever "flare again" instead of eating 2 cups of rice per day I'll be doing potatoes along with the chicken and green beans. I seem to be ok if I eat a few corn tortilla chips. If I eat too many I'm dizzy the next day.

Bacon....I try it once a month but it is still problematic for me. It doesn't seem to be for a lot of people including our leader. I read Zizzles post and she mentioned using uncured bacon. I never heard of uncured bacon but managed to find it in the larger grocery store a little bit from my house. The larger grocery store had two different brands of uncured bacon so I picked up one of each but I still have not tried them. Since my latest nut incident I'll probably wait about 3 weeks and retry bacon again.

Applejuice and juices. These are really iffy for me and still now and cause dizziness even with small quantity. I particularly like Nancy's comments above when working in fruits into diet after flare. I, like Nancy, found it helpful to use almond milk and add strawberries or other fruit to make smoothie but I only did this after I was well on the way to healing.

EYES....some really good news......after about 4 months of being GF my eyes are getting better and I mean significantly better. I'm age 50 and have had dry eye issues for about 10 years. It got bad in 2010 and I went to an eye specialist. She had me go to "Systane Ultra" over the counter eye drops in the preservative free vials. If you are not already using these they should help. The problem is they are incredibly expensive even from Walmart. 2010 I was pretty much having to use them about every 45 minutes to an hour just to survive. I easily spent about $1200 in 2011 on Systane Ultra. Jan 2012 I've been down to only like one drop per day. I'll probably spend about $100 this year on Systane Ultra plus no more sandpaper feeling in the eyes. It was so bad in October 2010 I set up appointment with the eye specialist but couldn't get in until this Thursday so it will be interesting to see what the renown University Medical eye specialist has to say re: diet and eye health. In addition to being GF it may be my improved diet is helping my eyes. Sept and October I was on a narrow diet. By around November I was significantly expanding and gradually working in more types of protein and more types of cooked veggies. Now I'm pretty much on 3 protein per day, around 7 serving cooked veggies per day, around 2 fruit per day...the whole fruit, generous use of coconut oil and extra virgin olive oil and potatos, potato chips and sometimes corn chips but I should probably discontinue them for awhile also due to dizziness.

Overall I'm doing well. I"m slowly adding in new foods. Last week I added raw carrots (shortcuts) to the mix and that is working ok. Pretty much any fruit has been ok for me but I seem to have less dizziness if I keep the fruit to about 2 servings per day. This week I plan on adding pork to the mix. I also plan on trying tinned sardines and tinned herring but the tins are on my counter but I haven't had the nerve to try them yet.

Hopefully something here might help. Brandy

[tex]

Brandy,

That's a very helpful post. Excellent, to say the least!

Tex

[Lesley]

Brandy - that is helpful, especially since I have been having dizziness and light headedness, mostly on exertion. I am having heart tests, but I must reexamine what I am eating to see what might be causing it.
Interesting to see how far reaching this disease is.