Posted by Helen on: 12.19.2007 /
Earlier this month I wrote about food allergies and sensitivity. I said that I was trying a wheat (actually gluten) free, yeast free, dairy free, caffeine free and low sugar diet to see if it helps with my Crohn’s disease symptoms. I said it was helping a lot.
Since then I tried going off my medication, because I didn’t know if that made any difference. That didn’t work, so I’m back on it.
On Friday I went to see a dietician who specializes in Crohn’s disease. I wanted to find out whether what I was doing made sense to her based on her experience of what helps and what tends to be problematic.
She was very informative. She said I was on the right track. This is what she said in more detail
Dissacharides (table sugar) do tend to be a problem; monosaccharides (honey and fruit sugar) should be ok because they don’t feed the ‘bad bacteria’ which causes the symptoms. In general fruit is good; avoid canned fruit, any fruit with added sugar and dried fruit with sulphites used in the processing.
Avoiding all gluten might not be necessary; some barley and rye is probably ok. Amarinth, quinoa, rice and oats are ok. Wheat tends to be a problem; also corn (in any form - sweetcorn, corn starch, etc). I wasn’t too happy to hear about corn - I didn’t really want anything added to my list of what to avoid/be careful about!
She recommended Cascade Fresh yoghurt - it’s sweetened with fruit juice not sugar and has a lot of active cultures in. She said it’s beneficial and not usually a problem even if dairy in general is. She also said some hard cheese might be ok because it has less lactose than milk.
Vegetables except canned are good but be careful of raw ones because they have enzymes that can be a problem.
Nuts are ok.
Limit red meat to 3-4 times a week; increase fish to 3-4 times a week; eggs and poultry are fine.
Red (hot, not sweet), white and black pepper all tend to be problems. Some other spices are fine - turmeric, garlic, ginger.
Avoid all additives in general.
She recommended Nature Made supplements because they’re USP approved and told me the three probiotics which have worked in some gastroenterology clinical trials (these don’t seem easy to get - I think they need special ordering): VSL #3, Flora Q and FloraStar.
She said I couldn’t be in the clinical trial they are running to test the effect of diet on Crohn’s disease because it’s a ‘blind’ trial in which they give some people a partially helpful diet and some a more helpful diet. I know too much now to do it. She said the diet is based on all the things she just told me.
She asked if I’d lost weight and I said maybe a little and she said “I suppose you’re happy about that”. True :). But I said I know that losing weight can be a concern because she wants to make sure it doesn’t mean I’m not getting enough nutrients. I said I think I lost it by cutting out sugar, not by cutting out food I need to eat.
What’s interesting - and frustrating is, the medical websites tend to agree on diet advice for Crohn’s and it’s quite different from these recommendations. It’s vague and doesn’t mention about wheat being a problem. The other day I found that wikihealth did have recommendations lining up with the major recommendations above. I think that’s the only ‘health’ rather than alternative medicine/nutrition/non-medical site I found with them.
Why are the medical sites unhelpful to counterproductive in their comments about diet and Crohn’s? Food restrictions are inconvenient but they are way cheaper and less inconvenient than increased medical treatment to address food-aggravated symptoms. I have to think there’s a problematic conflict of interest/lack of motivation for the medical profession to look seriously into the effect of diet. What drug company will fund that? How does that pay the doctors?
I like the gastroenterology group the dietician is in because it’s “Gastroenterology AND Nutrition” and they clearly do take the effect of diet seriously. I’m probably transferring to a doctor in her group since I didn’t like mine anyway. Partly because of his ignorance about the effect of diet. Mostly because I feel like when I see him, he isn’t interested in my thoughts, opinions and comments, only his own. Because he’s the expert and I’m not. I’m tired of relationships like that - I don’t need any more of them. It reminds me too much of the way some Christian leaders were with me.
I was talking to Rachel yesterday and she understood exactly what I mean. As she pointed out, the doctor may be the expert in general but I am the expert on my body. And I’m an intelligent adult and want to be treated like one.
Comment by: Elaine
1 12/19/07 7:00 AM | Comment Link |Helen - I’m glad you are finding a healthy way of eating that is helping your body.
No matter what the health issue, the more I can eliminate “processed” foods from my diet, the better I feel.
Like you, I have modified my approach with the doctors. It has been hard to find a doctor who “listens” to what I have to tell him about my experience with my body. The ones I have been to seem to latch on to a symptom and treat that without regard to the other things I tell them that are not “quite right”. Using the word “holistic” seems to send them over the edge.
So, I am on a quest to find a new doctor who is interested in listening to ALL my symptoms and then sorting them out for me. :)
I so appreciate that you are engaged in your health and not passively expecting the doctor to fix it. This isn’t a car you are dropping off for repair.
Our bodies are amazing and want to be healthy - my job is to create a healthy environment for it to heal itself. I’ve not been doing a good job of that these last few years - but, I’m moving in that direction.
Keep going Helen - I think you are moving in a good direction.
Comment by: Helen
2 12/19/07 7:19 AM | Comment Link |Thanks Elaine. I hope you find the doctor you’re looking for.
Comment by: Eliza
3 12/19/07 7:38 AM | Comment Link |Helen, I’m glad you got more information, though adding more restrictions sounds hard! Did anything she say lead you to add any kind of food back into your diet?
Interestingly, food/diet seems to be a big area of denial in western medicine, other than the basics of “avoid fat” for high cholesterol & “avoid sweets & starches” for diabetes. It’s as if western medicine has decided that eating food is such a normal thing that the specific ingredients can’t possibly matter to one’s health & well being, much less to specific disease processes. So then people go see naturopaths for dietary advice, & that seems to only increase the distance - allopathic docs hear back from patients the advice they were given, & sometimes it sounds crazy (un-scientific), & I suspect that only pushes diet/food considerations farther from the reach of allopathic medicine.
Haven’t looked it up, but I think it’s only been fairly recently, with some research on celiac disease and Crohn’s disease, that western medicine has allowed the idea that what’s in the digestive tract, large enough that we usually figure it’s not digested so why think about it, can trigger the immune system (stuff like gluten, bacteria, etc).
Anyway, it’s interesting that the center where you met with the dietician is embarking on this study of nutrition & Crohns - a step in the right direction, in the big picture!
Rachel’s right - YOU are the expert on you and your experiences. The doctor knows about the disease, but not your experience of it, and should act as your consultant in helping you figure out the best way to deal with it, based on medical knowledge and your response to treatment and your preferences, not approaching it as if one-size-is-supposed-to-fit-all!
Comment by: Julie Clawson
4 12/19/07 11:40 AM | Comment Link |I’m with Eliza, giving up food or just merely eating healthy is such a far out there concept to most Americans especially. We would rather send insurance costs skyrocketing and pop more pills than change our lifestyles. Your diet sounds like a basic healthy diet that most of us should be trying to follow.
Comment by: Helen
5 12/20/07 5:10 AM | Comment Link |Eliza, I find the reactions interesting when I say I’m on a restricted diet. People often react as if it’s a terrible privation. If I had to eat out a lot it would be quite difficult but it’s not actually that bad avoiding certain foods.
So I think there is sort of a cultural issue that being able to eat whatever we like is a ‘right’ - I find that fascinating.
I also think the incentives in the way medicine is done in the US - unfortunately - don’t encourage investigation into the role of diet in illness. I wonder who is funding the trial the dietician’s group is doing.
Am I adding foods back based on what she said? My longer-term plan is to experiment with various foods. I did have some of the yogurt she suggested on Monday and I decided to try oats since she agreed it was probably ok.
However, I haven’t been doing so well lately. I went back on the medication Monday, after stopping it and getting worse. I think I now believe it helps somewhat but even so I haven’t had a great couple of days so I’m not feeling like experimenting a lot at the moment.
Comment by: Helen
6 12/20/07 5:20 AM | Comment Link |Julie, yes, I think it’s fairly healthy on the whole - it’s not too extreme or weird. It probably doesn’t have enough calcium so I’m taking that.
I don’t know if it’s just that people don’t want diet restrictions. Certainly as I said in my last comment I think there’s a cultural sense that diet restrictions are a violation of human rights in this country :). But I also think people just don’t realize how much effect diet can have - and doctors aren’t telling them because the doctors don’t even know.
And like many things, maybe it’s not generally as simple as - just stop eating this and you’ll be fine. As I said I haven’t been doing great the last few days. But based on recent experience I do think there’s a general lack of awareness in this country about how much what we eat can affect our health. Not just weight issues - there’s awareness of that. But all those mysterious chronic conditions people have. Once you have one it doesn’t seem such a big deal to give up a particular food if if would make you feel better.
Anyway congratulations - I just read that you’re pregnant! I hope that isn’t upsetting your digestive system too much. I hope the up/rooted party went well last night btw. It was too much to attend two up/rooted events in one week - I couldn’t make it. (And, as it turned out, I had a particularly bad evening last night health-wise, so it’s good I went on Monday).
Edited to add: I just realized I didn’t have your current blog in my feed reader and when I added that I saw you’ve been very sick…I’m sorry to hear that. :( And I do hope the later complications you experienced last time won’t happen again.
Comment by: Julie Clawson
7 12/20/07 6:00 PM | Comment Link |hi - thanks for the congrats. I’ve kinda checked out on life for a bit these days. Just standing upright makes me sick and nearly pass out - fun times! I am ever so grateful to have a laptop, it is keeping me sane :)
Comment by: Eliza
8 12/20/07 7:05 PM | Comment Link |Julie (and Mike too, of course) - congratulations!! Sorry to hear you’re feeling so sick.
(You probably already know this, but if you’re feeling lightheaded when you’re upright, you’re dehydrated - actually, low on salt and water, as the salt helps hold the fluid in your circulatory system, otherwise it distributes through your system in a way that’s less useful for propping up your blood pressure. Can you get some soup or bouillon down, or even V8 juice or - less useful but better than no salt - Gatorade?)
Comment by: Helen
9 12/22/07 10:56 AM | Comment Link |Julie, I’m sorry the pregnancy has made you so sick. I’m glad you can still use your laptop!
Comment by: Helen
10 12/24/07 6:31 AM | Comment Link |Update: I’m happy that after a rough few days early last week I’m feeling better again. This is likely to be my healthiest Christmas ever :) I’m feeling quite proud of myself that I made cookies with Esther yesterday and didn’t eat any myself.
Until I am a bit more stable I don’t feel like experimenting a lot. On the other hand I don’t know how well I will hold out tomorrow…we’ll see…it might well end up being one of my less careful eating days.
Comment by: Ben
11 01/11/08 8:08 PM | Comment Link |I also have Crohn’s Disease. I’m certainly not advocating that you in any way ignore what your dietician has told you, but I wanted to point out that we aren’t all the same. I only had time to skim your post so far, but I see some differences with what I’ve been told and what my experiences have led me to believe:
1. Be wary of nuts, especially if you’ve been having any problems. The way I understand it, the reason is that the hard little chunks can get into the lining of inflammed intestines (which are more porous than normal). This also applies to seeds.
2. I have no problems with corn-based foods. I don’t eat corn-on-the cob anymore…and I don’t eat kernal corn if I’m not feeling well, but I can’t recall a time when I experienced any negative result from eating corn chips, cornbread, and other things like that.
3. I heartily agree with eating more yogurt & fish. I don’t actually like fish, but I’ve figured out many of the milder fish and I try to make a point to eat fish more frequently now, especially if I’ve been a little bit off my game.
4. Regarding red meat – leaner is better & ground is better than steak. Steak tends to be tougher to digest (depending on the cut, the preparation, etc.), but ground beef is much easier. Also, you can cook a roast in a pressure cooker until it is falling apart & then it’s easier to digest.
5. Organic really is superior. One of the best weeks I’ve had was when I stayed in a little village in the Cascade mountains that served almost exclusively local, organic foods.
6. Shy away from pork products, especially bacon, pizza toppings, etc. I haven’t generally had problems with BBQ ribs that are falling off the bone. Sausage can generally be replaced by turkey-sausage in recipes.
7. In many cases, it’s about structure more than content. Hard, tough, stringy, fatty, gassy, and greasy foods are bad. Nuts are hard. However, pulverized nuts are not. Luckily, I prefer creamy peanut butter.
Like I said at the top, I’m not knocking the bacteria research or anything like that. Just don’t forget to pay attention to how your body reacts. Even though there are always studies coming out saying they’ve pin-pointed this or that about Crohn’s, they aren’t consistent. If you aren’t feeling well, try: soup, jello, applesauce, etc. — and stay hydrated.
Also, if you have illeum problems (most commonly inflammed section), the weight loss can tend to result in mal-nutrition because so much of our nutrients are absorbed there. One of the benefits of fish is that it’s healthy oils are absorbed throughout the digestive system.
I hope that helps you! I’ll be praying for you. I’m so glad that you are paying attention to what you eat! Too many people just take the drugs and eat whatever they want (and they tend to end up in the hospital frequently).
In hope & peace,
Ben
Comment by: Ben
12 01/11/08 8:21 PM | Comment Link |Also, since you’ve just recently been diagnosed, you might be interested in The First Year: Crohn’s Disease and Ulcerative Colitis: An Essential Guide for the Newly Diagnosed. It’s actually pretty informative.
Also check out the Crohn’s & Colitis Foundation of America. They have email lists & info on support groups if you are interested in that type of thing.
Cookbooks/dietary guidance for folks with Crohn’s are also starting to come out, such as this one, that one, and the other one. I recently got the first one & we’ve tried a couple recipes out of it have been very good. I haven’t tried any of the others. Search Amazon for “crohn’s” to find more — most of them weren’t around a few years ago.
Feel free to let me know if you have any questions. I don’t claim to know the answers, but I’m willing to dialogue on them. :-)
Blessings,
Ben
Comment by: Helen
13 01/11/08 8:39 PM | Comment Link |Thanks Ben. Yes, I realize the foods which are ok are different for each person and the dietician said that too; she told me what foods tend to be problematic. But she also said it varies from person to person.
I think it’s going to take me a while to figure out which foods I do ok with and which are more problematic for me.
I’m mostly doing the diet restrictions but still having symptoms on and off, even so. I started keeping a food/symptoms dairy on 12/31 to help me compare what I eat and symptoms. I saw a new doctor a week ago who increased my meds because I was still having symptoms.
Thanks for offering to answer questions. I’ll go look up the books you suggested.