Dietician had no answers, now I'm on a bender....

toomuch

I'm sorry you don't enjoy eating. I too have many food intolerances, although my GI does not label it IBS. However after years of discovering all the diff. foods that cause gut problems and eliminating them there are still enough "happy" foods left. Yes I had to learn how to bake "no gluten" in order to ever have a dessert but eating out is not a problem if I stick to steak or chicken or burger with no sauces and veggies including a potato (fries are a fave).

The fact that you have 5 BM days says to me you still have something causing problems (sorry you prob. don't want to hear it). Do I miss chocolate and fruit and ice cream? Yes, and somedays I make the conscious decision to eat one or more of them knowing that day or the next I'll have 5 BM's instead of 2-3.
I actually plan some cheat days for days I can stay home

IBS is not gonna kill you and 5 BM's is actually not that bad compared to flaring with 20+ and blood.

I haunt Pinterest gluten-free recipes, but also have to be picky because I'm also no-lactose, no-fruit and several other no-no's. I LOVE dessert. I can cope with all the other diet mod. but the recipes I fantasize about are dessert.

Tell me what ingredients you can eat and I'll suggest something fun. Gluten-free carrot cake? Gluten-free cream puffs? Potatoes many diff. ways and all delicious. Asian food is yummy with ginger and coconut milk and spices. My non-UC husband said that restaurants aren't exciting to him any more because the food I cook is better.

Cheating on diet mod. is not bad, in fact I think it's completely normal. But when I cheat it's always with really good stuff now, not crap. Enjoy your cheating as much as possible.

Here's the reintroduction guide for 5 weeks AFTER you've done the low FODMAP, no fructose (so read labels and avoid inulin) diet... be sure to journal all that you eat/drink from the low FODMAP list as well as bowel movement activity and description of BM like diarrhea, constipated stools etc. during the whole 5 weeks.

week one; reintroduce Polyois (mannitol and sorbitol)
Monday 1/2 cup mushrooms (mannitol) and 1-2 tiny plums (sorbitol and mannitol) and monitor symptoms ( also using a food journal to monitor just as in the 5 weeks while doing the diet)
Tuesday don't eat mushrooms or plums monitor symptoms (as in journaling so you can compare your notes)
Wednesday same foods, plum and mushrooms
Thursday monitor symptoms
Friday same foods, plum and mushrooms
Saturday and Sunday monitor symptoms then move to week 2...

week 2; reintroduce lactose (even though you're not lactose intolerant you should avoid it during the 5 week diet (stay strict on the guideline for those 5 weeks, dairy isn't allowed on it as part of the possible food intolerance issues for FODMAP known as the Disaccharide) Monday 250 ml of milk or 200 g of yogurt and monitor symptoms
Tuesday no dairy, just monitor symptoms, same as week before, you alternate days of eating the reintroduced food and monitor on certain days only as I'm describing.
Wednesday have the milk or yogurt again
Thursday monitor only
Friday have milk or yogurt again
Saturday and Sunday monitor only

week 3; Fructose (monosaccharide) reintroduction
Monday 1/2 a mango OR 1 tsp of honey (not both) and monitor symptoms
Tuesday monitor symptoms only
Wednesday 1/2 mango OR 1 tsp honey and monitor
Thursday monitor only
Friday again 1/2 mango OR 1 tsp honey
Saturday and Sunday monitor only

week 4; Fructans (oligosaccharide)
Monday 1 garlic clove and monitor symptoms
Tuesday monitor symptoms only
Wednesday 1 garlic clove and monitor
Thursday monitor only
Friday 1 garlic clove
Saturday and Sunday monitor only

week 5; Galactans (oligosaccharide)
Monday 1/2 cup lentils or legumes and monitor symptoms
Tuesday monitor only
Wednesday 1/2 cup lentils or legumes and monitor
Thursday monitor symptoms
Friday 1/2 cup lentils or legumes and monitor
Saturday and Sunday monitor only

If any of the food groups bother you to an extreme or excessively bothersome then stop eating it, wait out the week and wait for the next week reintroduction to continue reintro process. Reason being is if any of the food groups that you're reintroducing causes you noticeable issues as I mentioned then that's the indicator that that/those particular food groups are causing you food intolerance issues and you'll either have to completely avoid them or have very small amounts only and only on occasion or they will continue to bug your gut/IBS symptoms.

If you don't do the low FODMAP no fructose diet correctly or cheat on it then you won't know what food group(s) might actually be causing your IBS issues.

FODMAP is an acronym for the specific food groups. You can find a proper low FODMAP and high FODMAP diets on google...if you had a food intolerance then witin the first couple of weeks of being on the low FODMAP no fructose diet would indicate that in itself because you're guts would feel a lot better after 2 weeks of doing the diet correctly.

My dietitian also told me based on my height and weight and being a female the amount of fiber, protein and healthy fat I'm suppose to be consuming daily for optimal nutrition for my size, she also taught me that my biggest meal of the day should be breakfast and my smallest meal, supper....she wrote me out sheets for every visit I had with her, 5 in total, she definitely did her job with me and even after the first 2 weeks with no major improvements other than my constipation not being as severe (because she had me eating properly and with the grams of each, fiber, protein and health fats daily) I still completed the 5 week course before doing the reintroduction to make sure there wasn't a possible slight food intolerance issue for me and did my reintroduction phase all the way through as well.

Here's an example of my diet plan my dietitian came up with specifically for me when she put me on the low FODMAP no fructose diet...

Breakfast; "Only Oats" gluten free oats with 3 tablespoons Hemp Hearts and 1 tablespoon black chia seeds with 1/2 cup blueberries and a small banana no bigger than 6 inches (which I ended up adding my banana sliced up to my oatmeal along with the blueberries because otherwise I felt like all I was doing was eating all day) am SNACK; lactose free Liberte plain Greek yogurt (not that Activia garbage, even my dietitian said she wasn't a fan of that crap) with 1/2 cup of any low FODMAP allowable fruit (I ate strawberries with it) and herbal tea (no honey while on the low FODMAP diet)

Lunch; Glutino (gluten free) english muffin (tastes amazing and I still eat this daily for lunch along with the same breakfast above, everyday) with butter and a boiled egg (or turkey or chicken deli meat----Protein) with a cup of coffee.
pm SNACK; Simply bar (it's a gluten free granola bar) Don't care for them but I did it for 5 weeks because I was committed to doing this diet right, especially for the money I was paying out of pocket for the advice/guidance.

Supper; 1/2 cup chicken (seasoned only with allowable low FODMAP spices and herbs) with 1/2 brown rice and unpeeled cucumber slices
evening SNACK (optional) Simply bar.

Protein is a mood booster, fiber, I don't care what anyone says (unless you have major issues with strictures in your bowels) everyone needs some form of fiber daily and healthy fats, we all need healthy fats to function properly as well.

My dietitian taught me how to eat properly again and what to eat that's actually healthy, she also helped determine that stress is my IBS trigger and she also helped with the severe constipation I was having thanks to teaching me all of the above....and water intake throughout the day is essential as well, last thing, she said if I continue to eat along these lines it will more than likely be better on me next time I flare with my crohn's. I follow the same breakfast and lunch as I mentioned and pretty much always cooked healthy suppers for myself and my family, but with the kids grown and hubby working out of town (which I sometimes go with them, son works with hubby, I still cook more often than not, unless I'm home alone but even then I cook more than eat restaurant foods but when son and hubby are home for 4 days off we will indulge in restaurant foods for supper more during those days). I still have some constipation issues but that's because I'm still dealing with my stress issues, hence the therapist that works out of my GI's clinic specific to IBD/IBS and other gut issued patients.

The low FODMAP no fructose diet isn't meant to stay on indefinitely, it's designed to help people with underlying food intolerance's they cannot figure out on their own...this trial diet has helped many IBS patients that had food issues that contributed to their IBS issues. Should a person find what food intolerance(s) they have then it's up to them to either avoid that/those food groups or eat them in much smaller amounts and way less frequently.

toomuchpoopin said...
So, I guess as part of a rebellion or maybe an I give up, I've started eating whatever I want. I wanted a mc chicken one day, and I had it. Today I ate Chinese food. I can't believe how delicious it is to eat something other than the small repertoire of "safe" foods I've been limited to for the past two years.

You go, girl :p

Seriously, I had severe pancolitis for years (as seen on scopes) and for most of that time I ate whatever I wanted: a McDonald's chicken sandwich and fries sat as well on my stomach as the healthiest organic food, in fact often better. There were some limitations: amount of food, for example. Without even realising it, I was very slowly eating less and less to try and reduce the symptoms later on in the day. (I was at my best in the mornings and early afternoons; by evening time, the fevers, pain and diarrhoea would start up.) But I still ate out at restaurants. I would even eat a box of popcorn at the cinema.

It wasn't really until I developed a stricture and started getting partial obstructions that I had to go low-res and bland. Steroids would make the stricture vanish (temporarily) and I could eat normally again until the inevitable relapse.

Basically, I had symptoms regardless of what I ate. Even on an elemental liquid diet, I still had fevers, pain and diarrhoea. Not everyone's IBD is food-driven. And not everyone is intolerant to gluten, lactose, etc. (I followed a strict GF diet for 6 weeks and it made no difference at all.) Frankly, if I was going to follow a severely restricted diet, I'd want to see very obvious benefits from it. No "well, I think I felt slightly better on Tuesday afternoon but I'm not really sure". Otherwise to me it's not worth it.

I really hope you will continue eating out and enjoying it. Fwiw, I agreed with every word of kiptyn's post.

My replies were related to IBS and not UC, I had a clean scope and still had issues with too many bathroom trips and that's when my GI recommended I see a dietitian, it was helpful for me (the squatty potty helps too) I was so scared I was going to end up with a prolapsed rectum/vagina (due to the RV fistula, which also showed clear before going to the dietitian) from the severe straining I was doing multiple times a day, it was a huge struggle physically and emotionally due to my fear of a prolapse. I found his advice helpful as well as the dietitian and the therapist.

I also didn't like how the dietitian didn't seem to be helpful to you toomuchpoopin so that's why I shared my full experience above....it likely would have been wiser if your GI scoped you first to confirm if your UC is cleared up or not. Either way though, the dietitian you saw doesn't impress me at all compared to how on the ball mine was.

I've been thinking about your post more. I do understand why your doctor thinks it is diet related or IBS or both. That doesn't make that guess right. It does sound like it could be some environmental thing going on such as diet (or anything else including yo-yo stress on different days) and it could possibly be IBS but right now it is nothing but a guess. It may actually still be stubborn inflammation. You won't find out the answer to this until your scope in the fall. As Ipoop suggested, maybe you should get a CRP level done before then, which might give you more info to go on.

In most cases, I'm not a believer it dieticians because all they know is nutrition and dieting. It is my opinion with most, even if they are experienced with IBD, all they know about it is what nutrition needs an IBD'r might have. They may also know some foods that are trigger foods for IBD but everyone has different trigger foods, so how can they possibly know what everyone's trigger foods are? For example, I discovered that I'm histamine intolerant with high histamine foods so eating some vegetables and just about all fruits, are my trigger foods. They wouldn't know that. A dietician might tell me to eat more spinach or juice it to help my UC, not knowing that spinach is high in histamines and would actually make me worse.

I really hope this works out for you pb4!!! I admire the hard work u have been putting in to getting better. How are things going on the stress relieving front. Any advice you can give to this stressy type A gal?

Sorry toomuchpooping...hope I am not taking over your thread.
B

Thank you all for your responses. I'm overwhelmed with how helpful and kind you all are. I will try my best to respond to most of the points mentioned.

Yes, it is still possible I have inflammation, unfortunately my scope isn't until the fall because I'm in Canada and this isn't urgent, lol, so we wait. My blood work has never showed even the slightest amount of inflammation even when via colonoscopy it was clearly very inflamed! This has made monitoring via blood tests useless for my case unfortunately.

The dietician did spend almost two hours with me. Pb4, thanks for taking the time to write out all those details from your dietician! Very sweet. I say I'm mostly low fodmap because with the exception of occasional onion and wheat I'm low fodmap. The dietician did say we could try to elinate those last two things and reevaluate with her in 6 weeks. I might still do this, even though I did go 100% grain free before it was at a time when I was definitely flaring and so the results might have been skewed. But it doesn't appear that wheat/ gluten gives me issues, but again, I could try and know for sure. Garbage food agrees with my guts much more than healthy good (like nicecupoftea mentioned) other than maybe some distress from the grease fast food garbage is ok...but I didn't eat it for the last two years because I was trying to be kind to my guts assuming they'd be kind to me, well, they continue to flip me the middle finger, so eff them! Lol.

I think when I say I don't enjoy eating it's not because what I'm cooking isn't tasty, it is, but it's lost it's enjoyment because I feel trapped by having to make 100% from scratch anything I stick in my mouth, well, until my bender that is. I think I was feeling trapped and bitter about food. It wa sweet of you imagardener to offer to help me with food ideas, heeheehee I might take you up on that some days.

I also assumed my guts react to my emotions, in fact, I know this is the case sometimes. I've worked with a psychologist for about a year and a half and found it helpful. She was really good at what she did and I think my anxiety/emotional factor of the guts is pretty well controlled, i mean, I still have to work on it, but I can identify when it's my anxiety stress and worry creating turmoil in my guts, that's why I assumed the remaining is either inflammation or food related.

I know for some diet is not related at all. For me it is at least partially a (sadly it's the healthy foods like raw veg, fruit, garlic, whole grain anything etc) but I think I need to try to loosen up and find a balance between depriving myself of everything that's tasty but "bad" even though my guts tolerate it (I.e., occasional take out)

Like iPoop and Gary said, I won't really know until I get a clean scope, until then it's a lot of guessing.

Thank you ALL again. It wa nice to get your helpful suggestions, but, more importantly to feel understood.

I will let you know if I decide to give up wheat, and dedicate 6 weeks to know for sure, or, if I just keep being a rebel until i get my scope and know for sure if I'm still dealing with inflammation.

Not to sound negative but I have a friend who is a dietitian and she doesn't know anything about anything. She definitely doesn't understand IBD or any other illness. It's great if it helps someone but i personally do not buy into it. Maybe it would be helpful if your condition was obesity or blood pressure, but with illnesses like IBD where there is no hard proof that diet is related, her guess is as good as yours.

Thank you pb4. I am going to try these things and go get those books. It is very very appreciated!
B

hateuc said...
Thank you pb4. I am going to try these things and go get those books. It is very very appreciated!
B

You're very very welcome!! I'm very happy to share in the hopes of helping others, there's nothing worse knowing how so many suffer and don't know where to turn or what to trust which makes it easy for many to give up and sadly so many do because that's what hopelessness does.

The mind-body connection is sadly far too often overlooked and it's a shame because they do go hand in hand, those books taught me that and gave me a new hope and a realization I lacked the majority of my life, being aware is one thing, taking action is quite another and like so many cliches, you get out of it what you put into it and that goes for everything under the sun.

Good luck and wishing you the very best!!