Question for everyone

[A Dietitian]

Hello Everyone,

I am a dietitian who is about to do a talk for the CCFA support group in my area. It is being publicized as just a "question and answer" type of meeting. I have worked with many crohn's and UC patients in the past, but am not sure what kind of questions I should be prepared for. So I thought, why not ask some patients who are more proactive about their disease!!

What kinds of questions do you guys have for a dietitian?

 

[Karen]

HI & WELCOME ABOARD ... I am sure that I will have plenty because my loving husband is the one with CROHN'S so if you could be as so kind as to drop me a PM with your e mail and maybe we could stay in touch that way as well ... so once again WELCOME ABOARD !!

:smile: :smile:

 

[andilynn09]

I know when I was first diagnosed, my doctor told me I should be on a low-residue diet when flaring....might be presented w/ questions about what foods to eat and avoid on that type of regimen.

Also, maybe what foods (if any) are you most likely to get the most protein and nutrients out of, given the fact that CD doesn't allow us to get as much out of our food as a "normal" person.

 

[mikeyarmo]

I think these would be some questions:

My friend/neighbour/cousin/some person I met on the street said I should eat X and avoid Y. Is this true?

What should I be eating if I am in a flair?

What foods are safe and what should be avoided?

Can diet cure or treat Inflammatory Bowel Disease?

Should I be taking a multi-vitamin?

These are just some of the questions I think some people would have. I based them off of what I had been through myself and what I believe other people are interested in knowing.

 

[A Dietitian]

Thanks guys! Most of these things I can answer. I guess I am concerned that a lot of people will have questions about herbal products, and although I have some knowledge about herbs, I want to know what people are trying, even if there is no real evidence behind it. Again, thanks so much!

 

[mikeyarmo]

Also I would think people may have questions about some specific products:

probiotics, fish oil, and any multi-level marketing product that they have heard helped others among others.

 

[xrayzerase]

this is a great idea -asking those who "live it" to "work with" (in a sense) those trying to understand and further evaluate how foods/supplements work-w any (in this case-IBD-and with meds taken-and like mikeyarmo wrote-how foods play a role or-..etc..-what differences in foods during flare and during remission-how things are absorbed etc
personally-right now..i am curious to know more on supplements-and how they interact (i.e.: if you take one-will it increase or decrease another -and does flare-or-remission-play a role in all this-does it "change" the increase/decrease of the interaction/s?
i am taking a (i think-a good quality mv--natures plus ultra II)multivitamin-vit c-salmon fish cap-calcium/d.
i also started taking 2 tbsp mangosteen juice a day.
i am some days eating a little-fish/mashed potato -but-many days am still just drinking ensure.
how does food play a role in digestion of supplements (the supplements "in" the food as well as supplements in condensed-separated form..ie-does food affect /or how does it react/interrelate with the supplements (condensed) -and-does when one is taken-like-together-or separately-or..(?) play a role in not only digestion/non(or partial)-digestion-but also can one supplement change the make up of another..and how does this differ in the actual food and the separated condensed (pills etc) from of supplements? (or does it?)(and what are the interactions between food/supplements-and the disease. (for me-i have crohn's -mild-ileum-but due to this -like in general w crohn's-it seems many supplements get lost in digestion. so..taking meds...i guess this helps? (i am right now on pentasa/entocort--maybe starting remicade..not sure yet)
but..from what i have read here-it seems ibd varies-(uc/crohn's-in sense of digestion-czuse crohn's often is in ileum or small bowel..so..dunno. what i am asking i guess)
just-seems it depends on which type of ibd-which area crohn's is active-how active-infammation or narrow areas/blocks (partial..or whatever) or fistulas or ..i mean..how does all this relate in sense of how things are absorbed? (in sense of "differences")
it sounds like things like nuts/seeds/high fiber/raw veg/fruit-skins-may be across the board in "trouble" food..but for various reasons (?) (blocks/and/or digestion trouble?..still unclear)
i learned a lot about supplements from others in this group--lots of things that answer many of these things..but-it would be just interesting to know of more studies on supplements and interrelations -in other words--i hope maybe you will sahre with this group whatever you may learn as a dietician. i already read what i can from ccfa site--but..maybe not all is so easy to access..-so-it would just be cool if we were all "linked better"...or..something..
sorry for ramble-and off-the-top speaking..
i am just trying to learn how to best make use of the supplements available..but..am just starting to take it all in..so-i am scatter-brained with a thousand questions
anyway-good luck w your work
andrea

 

[xrayzerase]

ps:
not sure if this is "diet-related"-but have you heard of /know anything about the studies on curcumin?

 

[kix66]

I'm interested to know what state you will be in for the meeting. You may get some questions re: eating out. Definately will get questions re: probiotics and vitamins, you can count on it!

 

[skeet]

What foods break down most quidkly and completely in the digestive tract? I know my food doesn't stay with me long enough for good absorption, so stuff that breaks down the most effectively must be better for me, right?

 

[healthycookie]

I was diagnosed in August and as I am Pro natural healing in a big way, I was prepared to do anything so as not to go on pharma meds. I moved to LA and see a Chinese doctor for acupuncture on a daily basis. Since seeing him, I have had no return symptoms and he believes that he can send me disease fully into remission. My cousin, on the other hand, has been suffering with crohn's for 4 years and has had two surgeries already. My Dr. here said there is nothing he can do for her as she is already too sick. I think when it comes to the effectiveness of natural healing and herbal remedies, the key to their success is early detection of the disease. I have detailed my story and am documenting my journey on my blog at www.healthycookie.wordpress.com I discuss my diet, my treatments, my lifestyle changes and my views on the disease as I truly believe that with Crohn's it is part physical and part psychological and a healing environment and positive outlook can make all the difference. Would be happy to answer any detailed questions you may have about my herbal approch.

 

[Jeff D.]

You may want to learn/know everything you can about probiotics and so that you can answer many questions about them as many questions I here of are about that. Maybe how to deal with different foods when sick.

Good luck
Oh, and welcome to the forum

 

[Kev]

Well, tho this may be a bit afield of diet, if I were there I'd grill you on what foods & supplements are high in lactose content, either naturally or by processing. I've found that reducing my lactose intake has had tremendous benefits... But it is often v hard to spot... Like used in the production of many common brand name vitamins asa filler
Or in orange juice.. (finally found one that has added calcium but no extra lactose)...

 

[A Dietitian]

Thanks everyone for your questions! I will definitely try to share my talk and what I find...my talk is on Thursday and I just now got a chance to read some of the other great questions.

Andrea-I have not heard or read anything about curcumin, but will look into it. Also, thanks for pointing out relationship between absorption and location of the flare. I have a really neat diagram that shows where different vitamins and minerals are digested in the GI tract. I will try to post it here, if I can manage it!

Kev, I never gave lactose in processed foods much thought because most people can digest small amounts of lactose. I will look into it and get back to you soon.

Thanks everyone. Am going to focus on my presentation now and share with you all later!

 

[Jeff D.]

Good luck, please post the diagram soon as it would be neat to see.

Thanks

 

[A Dietitian]

Well, the presentation was last night and only one person showed up. But, in any case, I was glad to help the one person who came because she had a lot of really good questions and concerns as it was her son who has crohns.

Curcumin is the active ingredient in turmeric and it has been found to have anti-inflammatory effects. Still working on finding articles/studies that look at it in use of Crohn's disease.

The diagram is from a book and I need to scan it and then figure out a way to post it.

Thank you all for your help everyone!

 

[Valentina]

glad you helped that person at least! they were lucky to have all your undevided attention
Ive always been worried about what I should and shouldnt be taking.. vitamins and suppliments. I never know if I will just be hurting myself or wasting money (thats usually what happens) so lately I just wait for the DR to tell me I HAVE to take it (calcium and potassium are on my "must" take list right now) so far that seems to be working for me.
hope you can help lots more people in the future

 

[Kev]

Hey Dietician... I'm sure everyone feels that you are more than welcome for whatever assistance you were able to derive from our input or experiences. Hope that the turnout, albeit disheartening, won't leave you feeling your efforts on the behalf of people with IBD were in vain... Unfortunately, IBD is not a glamourous or even socially acceptable ailment. I recall all too vividly seeing a celebrity of sorts humilated trying to put foward a message to the public about her own IBD
(Kelsey Grammars wife).. And more often than not, those of us with IBD can't get out of the house, no matter how strong our desire or intentions. That's our life..

 

[xrayzerase]

i'm glad you were able to talk/ help the mother who came in to ask q's about her son.
presentations and people showing up for any stuff is always so sporadic..so..don't let it deter you. it sounds like you have a great approach: wanting to both research as well as learn from not only studies-but from those who specifically "need" to know more about diet (everyone)-but-learning from those who are "ill" can shed light on the whole of the body..so..i don't know..just-whenever i hear of anyone in any research who takes in all sides (and links the sides --as much as possible) -i think is a good thing. that you came to this group asking for questions was an excellent thing in my mind. ..it says a lot.
oh..curcumin: what i know so far i have read of via mdanderson --here is one link:
http://promosearch.atomz.com/search/promosearch/?sp-q=curcumin&sp-a=sp1000cbd6
hope that is helpful.
again..i was just dx'ed less than 2 months ago--so-i really have no clue about so much..but-i am willing to learn-and actively want to share all i can.
oh..as for the diagram..hmm..well-if you can scan it in--maybe save it as a jpeg and put onto some page (free) like photobucket (you can put text/diagrams up) and then just link us over to it (just one idea..there may be many other better ideas..but..just a thought)
good luck and i for one hope to hear more from what you learn
andrea

 

[Starbelly]

wish I had found this forum earlier... was just swamped with books and dvds and pamphlets on nutrition while in the hospital... some claim this some claim that... some claim they can cure you with their diet... weird how two different books can claim to cure you from your IBD but they contradict eachother completely... dairy vs no dairy... soy vs no soy.... rice vs wheat... Gluten is the Devil... sugar will kill me... any flour of any kind will kill me... only organic vs the new age hippie vegan diet will kill you... can I eat sweet potatos or was that no potatos? or no corn, or no rice, or no oats, or no whole grain, or was that white bread? or was it broccoli, or spinach? no wait that's got e. coli.... or meat or fish, and does the fish have scales, or is it shell fish (which will def kill you ; ) ) or tofu or rice cakes... sorry, but I'm so hopped up on steroids right now!!!! Anyway, my point is that in my experience... all of that is anecdotal... I haven't notice one single thing about my diet that would give me a flare up or prevent one... they gave me a special diet in the hospital and i felt terrible... the morning my brother picked me up from the hospital I ate 2 of every breakfast item on the McDonalds menu... disgusting, greasy, processed, syrupy, floury garbage..., and the orange juice isn't even real... that was my best my stomach felt in 2 months.

 

[alan]

Dietitian. Our Dr. had no clue when I asked him about diet for our daughters CD. We found that SCD - Specific Carbohydrate Diet combined with a powerful probiotic worked synergistically to cure her CD.

 

[TammySue62]

Well, the presentation was last night and only one person showed up. But, in any case, I was glad to help the one person who came because she had a lot of really good questions and concerns as it was her son who has crohns.

Curcumin is the active ingredient in turmeric and it has been found to have anti-inflammatory effects. Still working on finding articles/studies that look at it in use of Crohn's disease.

The diagram is from a book and I need to scan it and then figure out a way to post it.

Thank you all for your help everyone!

Hi Dietitian: My Dietitian told me to stick to the RAB diet whem im in a really bad flare.That stands for rice, apples,and bananas or if I am really sick he puts me on TPN im sure you no what that is ? Ive been on that about 4 times.Once was as long as 8 mths without food and gained 30 lbs. :eek2: :yrolleyes:

T SMITH

 

[Devi]

Curcumin definetely helps and you can incorporate that into your daily diet. If you have any Indian (from the country India) friend, you can ask them how to cook daily food with turmeric (curcumin is the active ingredient in turmeric)

 

[healthycookie]

I'm sorry, and I don't want to judge- but... I am not a specialist here, and not certified to dole out nutrition advice, but I have been reading a ton of books since being diagnosed and there is absolutely nothing worse on this planet for anyone than fast food, let alone someone with rips and tears and inflammations in the digestive tract. Special diets absolutely 100% do help.

A modified diet is not a miracle cure. You will not feel better the next day. You have to stick with it, strictly, for a period of time. It is a cumulative effort. Staying on the diet for 3 weeks and then cheating with a big mac and coke will set you back in the process. It takes time to HEAL just as it takes time for disease to develop. Pick a diet and stick with it for 8-12 weeks and then see how you feel. Feel free to point fingers at me when 12 weeks on a whole food diet doesn't help. So here are my guidelines for eating, derived from my doctor and the dozens of books I've read. Some of it may work for you, some will not. My basic rules are to avoid anything refined, processed or preserved. if it went through at any point before being placed on my dinner table, it is not food to me. Everyone works differently:
No wheat, yeast, gluten, nothing refined (flours, sugars, oils) no dairy, no corn (tough on the strongest digestive systems), no potatos, no red meat, no sugars (sweet fruits included) and nothing fermented (alcohol, vinegar, tempeh).
Stick with steamed veggies (easier to digest), whole grains (brown over white rice), high fiber, low sugar, low sodium cereals, apples, grilled white meat and fish (white fish, trout and salmon preferred), nuts in small well chewed quantities, lots and lots and lots of plain clear drinking water.

Why do these diets help? Because whole natural food contains the majority of enzymes and nutrients required by your body to break them down and therefore makes them easier to digest. When you do not need to call on your bodies stores of energy and enzymes to digest food, this energy can be directed elsewhere. This makes your body stronger, your immune functions stronger and better able to fight off disease. That is proven science. So though McDonald's may be great at the time, fighting a disease of any kind is a lifetime committment and sometimes we just need to suck it up and put our health before our taste buds.

 

[lau]

people asking what they should be cutting out of there diets like the things that irritate the crohns such as potatos they irratate me.

or people asking the best vitamin substitute that will be absorbed enough to able to take affect on those who are at lower rate of absortion.

what fruits they should be having and not having?
welcome im sure you will get alot of help here

 

[ravyn142003]

I have replied to a similar inquiry on another website but never heard back from the inquiry! So are you for real cause I would like to participate!

 

[harryjr]

I have a few suggestions: My gastro dr. says if you can eat it - w/o trouble eat. I have to stay away from grease and dairy.
Also, if I need it take the "cheapest" multivitamin there is. When I flare: tea w/ lots of sugar, ENsure [mixed with Pepsi], the dreaded green jello; oatmeal; smashed bananas; tomato soup [if you can handle it]. This generally calms down the tiger in my tank.

I have been to many Support groups and Ed meetings. I don't think one can prepare for every question. I've heard a million of them. I wouldn't woory too much just -------------- people must eat sensibly when they're sick.

You could try www.ccfa.org for some tips too!