contradictory advice b/w Heather and GI doc--I'm confused
#96024 - 08/06/04 08:56 AM
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After having IBS for 20 years and not having found anything that helped, I found Heather's book and started following her diet, while also using acacia. For a month, this turned things around. And I was delighted, to say the least. Now, though, I'm having a bad stretch (gassy, burpy, feel like I have to go to the bathroom all the time, but I can't, crampy). I had a GI appointment today--in the past I'd only discussed my esophogeal stricutres with this GI who is a new doctor for me, but someone I think very highly of. He wanted to run a few blood tests (I've had the standard GI workups in the past), gave me a prescription for Levsin (I had Bentyl years ago but it didn't help), and he gave me a diet. Which is for a lot of insoluble fiber. A cup of bran a day. I don't know how to make this merge with Heather's advice. I've always been a healthy eater (lots of fruits and vegetables, whole wheat everything), and had only changed to some French bread, more white instead of all brown rice, and smaller servings of vegetables with Heather's diet. I don't really know what I should be doing now. I was hoping for advice. I'm awfully uncomfortable (once again) and fairly frustrated. I also wondered what people's experience with the Levsin has been. Do people go on Heather's strict strict diet of rice, french bread, crackers, whenever they have GI distress? Or do you try to keep on the diet outlined in her book (i.e. no triggers, a bit of soluble fiber with each meal, some sort of fiber supplement, fennel and ginger teas)?
Sorry for the long post, but I'd welcome advice.
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Hey there...
I'd say go with whatever makes you feel the best. Heather's diet has been a lifesaver for a lot people but others find that following a different diet works better for them....it's different for everyone!!
I'd say give your GI's diet a try and see how you do with it...
I haven't been on Levsin so I can't give you any input on that...but good luck with it and keep us posted on how you're feeling!! 
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I don't blame you for being confused. I can't exactly tell you what to do, but I can tell you the few things I've learned along the way:
1. GI docs rarely, if ever, know much of anything about diet for IBS. They mean well, but it's like they don't know the difference between insoluble and soluble fibers, I swear. I just saw a new doctor this past week - not a GI doc, just a GP, but she told me to keep up with how I was eating (Heather's diet + a SFS), because that's exactly what she was going to recommend if I hadn't been doing it already.
2. I used to go back to "what to eat when you can't eat anything" every time I had an attack, but I started to feel like that was counterproductive. If I'm feeling really lousy and queasy, I might stick with it for the rest of the day, but by the next day, I'm eating insolubles with lunch and dinner, eating chicken or fish, etc. I find that I feel *incredibly* run-down and even sicker if I stick to just solubles for more than a day.
3. I don't know if you're normally a C or a D, but I found that after a month on Heather's diet, I still didn't feel all that fantastic either. I was nowhere near anything resembling stable, and in fact, I had always been a D, and now I tend more towards C. The diet change is a drastic thing for your body to process. I know that for some people, they feel better immediately, but honestly? I've been doing the diet for 2 months plus now, and I'm only JUST NOW starting to feel noticeably better.
I don't know how much of a SFS you're taking, but I didn't notice it even helping in the slightest till I worked up to 7g/day, and even so, I still don't consider myself stable.
I guess I'm kind of rambling and not really answering your questions OR giving good advice  - I just wanted to say to hang in there. You can try your GI doc's recommendation if you want, but personally, I wouldn't touch that kind of diet (a cup of bran a day?!?! ack!) with a 10-foot pole.
Good luck!
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I don't know if I can help, but I will tell you a little bit about my experiences. I, too, have been told to eat a lot of fiber (bran cereal, whole wheat bread, etc) by doctors intending to help. My body can't handle that much insoluble fiber I've had Heather's books since 2001 and I have followed the diet to some extent off and on since then. I've had times when I could eat whatever I wanted, and then it seemed like all of a sudden, I'd have an attack  I have finally realized that it's not worth taking the chance and I am really trying to strictly follow Heather's diet now. I'm still not 100% stable - in fact, I had a really bad day yesterday - but I do feel better overall when I follow the recommedations in Heather's books.
I have tried some different anti-spasmodics, including Levsin (which I'm allergic to) and Bentyl (which did nothing for me). Right now I am drinking peppermint tea to help soothe my stomach. Also, since I did have a bad day yesterday, I am eating a very limited diet today (plain English muffin for breakfast, Arrowroot cookies for a snack, white rice for lunch, etc) and drinking lots of peppermint and fennel tea. It seems to be helping and I might try to have a little something more for dinner.
I also just started the Hypnosis CDs this week because my biggest trigger is stress. Based on listening so far, I would recommend looking into this if stress is a factor in your IBS too.
Hope this helps and good luck 
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Hi Casey!
I'm Nel. I just had to reply to your message, because I've encountered the same thing with doctors who don't know the difference between fibers. I have gotten so much bad advice from doctors durring my 21 year ordeal with IBS-D I pretty much gave up 4 years ago, and have been following a modified diet similar to Heather's ever since. I just had no idea how ill all those tests (upper GIs, lower GIs, barium enemas, sigmoidoscopy, colonoscopies, etc.) were making me feel. Other Bad Things doctors have recommended to me include baking soda with water, recommending running, recommending bedrest (was bedridden from ages 20-22), and recommending taking one-a-day vitamins (hair fell out, IBS was worse than ever). All the while "running more tests." The last straw was recommending I reduce my stress. What a novel idea!
I've been modifying my diet in the last 5 years, and never felt better. And in that time, I only go to a doctor for regular checkups. Going to doctors only heightens my stress, so it turns out that that was easily remedied.
I can't tolerate a lot of soluable fiber, because the weight of it in my stomach is too much, and it's a dangerous game to play trying to regulate the frequency of my attacks with fiber and loperamide. But some tricks I do use:
Only drink lukewarm water, never cold
Wait an hour after getting up in the morning before eating or drinking
I eat small meals, but make sure to get enough food so that when I'm hungry I don't dive for a trigger food out of starvation
...and others like "Dinner and a movie" is "Movie, then dinner."
Anyway, sorry for my rant. I just saw the doc this morning and he confused IBS with Crones, then recommended me reducing my stress.
Thanks for your postings. It helps to know that I'm not alone.
~nel~
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Debra,
I agree with Casey about a cup of bran a day -- AACCKK!! I'd have to move into the bathroom! He's right that you need fiber, but like most doctors, isn't up on the latest research on insoluble vs soluble fiber. I would stick with your version of Heather's diet which has been helping and which sounds like a healthy mix of soluble and insoluble!
Good luck and let us know how it goes!
--------------------
Laura
Keep it simple!
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Hi, Nel and welcome!!
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Laura
Keep it simple!
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My GI doc doesn't seem to differentiate between soluble and insoluble fiber either. I do think he means well and is a good doctor, but hasn't been very helpful in the diet dept. Thank God I found Heather's website. Everyone is different, but I could not tolerate a diet like the one your GI doc gave you.
My GI doc also prescribed Levsin (Hyoscyamine) and it works well for me. He originally prescribed Bentyl and when that didn't work he prescribed Hyoscyamine .375 mg twice a day. This worked great for a while but it made my C worse (I'm IBS-A)so he changed it to to .125 mg every 6 hours when needed. This works even better yet and doesn't give me C. Thanks to Heather's diet, I don't need the medication very often, but it's nice to know it's right there when I do.
As far as Heather's diet goes, when I have an attack or start to feel bad, I stick to rice, oatmeal, soymilk, etc. but I also keep eating small amounts of insoluble fiber. When I give up insoluble fiber completely I end up feeling worse.
Also, although I was feeling better after starting Heather's diet, I still had alot of bloating (even Fennel tea didn't help). After reading on the boards that using digestive enzymes (like Beano) when you eat veggies helps, I tried it and the bloating went away.
Hope this helps and I hope you feel better soon.
Kim
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A lot of doctors are not up on the latest research and just tell people the old standard stuff they learned in med school. They aren't saints you know. Your doc was wrong about bran etc. I think you should stick with Heather's diet a little longer and chances are you will improve. A soluble fiber supplement that works for you is really imperative. I hope you feel better soon! 
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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!
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Hi! Thanks, it's good to be here.
~nel~
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I quickly scanned thru the posts and this is my opinion. If you want to try the wheat bran do so in small amount with soluable fiber. For example I can not eat a serving of oatmeal on its own, but I love it, so I mix it with cream of rice about a 2:1 ratio w/oatmeal being the smaller. And that has worked for me. Like others have said everyone is different so experiment and do what works for you. Good luck!
--------------------
IBS-D
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Thanks for all the generous responses. This helps a lot.
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Quote:
and recommending taking one-a-day vitamins (hair fell out, IBS was worse than ever).
Hi, just wondering if you are for certain that the one a day vitamins had something to do with hair loss. This is a problem I have too, and I have been taking the OAD vitamins for several months now. Luckily, I started out with really thick full hair but every day my bathroom floor is covered with hair! ACK!
One doc made mention that the hair loss may be related to a thryoid problem (something I had in the past) but a recent blood test shows that my levels are normal now.
Anyone have any thoughts on this?
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It's never too late to be what you might have been.
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Hi Brenda,
A couple things contributed to my hair loss. The vitamins I was taking gave me an acid-y stomach and different D symptoms (long, runny) than I had already with the IBS-D (explosive, gassy). I knew they were responsible for this change but I did not stop taking them because I listened to my doctors, who insisted I needed them. I was slightly anemic, and they thought it would be best for me.
I became very underweight as a result. This contributed even more to my hair coming out-- about 50 hairs at a time (whenever I pulled gently on my ponytail, for example). Every time I ran my fingers through my hair, I had more come out. During the time I took vitimins, I lost more weight, and constantly had hair all over the bathroom floor, my sweaters, my barettes, etc. It never came out in clumps, but it did come out, and constantly.
My hair loss stopped when I stopped taking the vitimins. So did the acid stomach feeling, and the different D symptons.
About 5 years later, I took several B vitamins including riboflavin, thyamine and niacin, and my hairbrush filled up with hair again. I recognized it right away and stopped.
Although my doctors have shaken their heads over this one, I have met several people who have encountered the same problem. My blood tests indicate I'm healthy, no iron, glucose, thyroid or liver problems. I still don't know why I react this way to vitamins, but I'd rather be perplexed and healthy.
Good luck--
~nel~
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OH MY GOSH!
We have so much in common - with the bathroom symptoms and the hair loss. I am currently taking one a day vitamins and an iron supplement. When I towel dry my hair before getting out of the shower, I can look down and see hair raining down out of the towel! Then when I get out and blow dry it, the bathroom floor gets a good amount of hair on it. Jeez, I'm sick of cleaning the floor and tub every day! ACK!
I don't know, what you do think, is it better to keep up with the vitamins (I mean, I try to fill up on healthy stuff every day but that IS hard to do EVERY day!) or quit the vitamins and keep my hair?
Seems crazy that vitamins would do such a thing, doesn't it?
--------------------
It's never too late to be what you might have been.
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!!! It's so weird to talk to someone who's gone (going) through the same thing as me!
I, like you, had a lot of hair, so it wasn't like my friends noticed I was going stark raving bald. But I saw what was happening, and I knew it wasn't right. I made the choice to stop taking vitamins because I knew they were causing something in me, some sort of chemical imbalance related to my D. When I stopped, and my hair stopped falling out, I made the connection.
As for taking vitamins again: At one point I realized that a lot of things had to be going on in my body for my hair to be falling out. Today, if something is making me sick, even if my doc says IT'S GOOD FOR YOU, I stop. I don't like to go against standard medical advice, but I do, and my tests come back normal. It's like I tell my doc, If I'm such a healthy person, why do I spend so much time in bed clutching my stomach when I follow your advice?
It just doesn't make sense for me to make myself sicker. Just my 2 cents--
Best of luck to you!
~nel~
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