I'm Starting a New IBS Journey- read my whole story
#340546 - 01/07/09 09:44 AM
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I just visited a gastroenterologist. I got very lucky; my school was canceled because it was raining all night and the roads were icy.. The waiting list for this and all other pediatric gastroenterologists around here is two months, but I got in on a cancellation. Anyway, my whole strategy for my IBS was changed. Ill start from the beginning
My name is Matt, I'm 16, and I was diagnosed with IBS around 3 months ago.
I have always had some slight problems with digestion, but nothing to prompt me to talk to my doctor. Starting with my junior year of school, things got worse. After two weeks of a weak stomach and diarrhea, I went to my pediatrician thinking I was sick, and was diagnosed with IBS. At the time, I didn't imagine that I would still be having problems in January. My doctor said that there really isn't a treatment, but I can modify my diet and "learn to live with it." I did then go to a specialist (the one I saw again today) to rule out more serious illnesses.
About a week after I was diagnosed, my mom came home with Eating for IBS. She is a huge gossip; I told her to tell nobody that I had IBS, but so far I have caught her telling four people (which makes me very dissapointed). She had mentioned my IBS to a friend, whose husband has IBS and a used copy of Eating for IBS.
I started following the diet strictly. I will do anything to make my symptoms go away, and how a food tastes has become almost meaningless to me. Well, I really started following the EFI diet after coming here and posting. For the good or the bad, you guys have been wonderful.
So a few months later, my symptoms haven't improved at all, and I've lost 6 pounds. My mom was in tears today when she found out that I have lost even more weight, as I have always been thin, and it has always bothered her. Right now, I'm 5'10 and 130 pounds (well, that weight was taken this morning before I had anything to eat/drink).
I brought Eating for IBS to talk about it with the gastroenterologist. She told me there that IBS can vary highly among people, and a book for everybody with IBS simply doesn't work. Furthermore, she suggested that even though fatty foods can irritate the GI tract, I should increase my fat intake to combat my weight loss. I also asked her about probiotics (acidopholus specifically), and she said that there is no downside to taking them, but absolutely no scientific evidence of their effectiveness.
So this is what my plan of action is;
1- I am going to go on a low-fructose diet, to see if that is causing my symptoms (ironically enough, since I've gotten IBS and eliminated some foods, I've been eating a ton of foods with fructose).
2- I am going to go to a dietitian to help stabilize my weight
3- I'm going to be tested for lactose intolerance
4- If none of those are effective, I'll be put on a drug for my symptoms (at least to try it out).
5- If I continue losing weight after all of this, my doctor wants me to have a colonoscopy/endoscopy to affirmatively make sure that I do not have something more serious.
I did not talk to my gastroenterologist about if my IBS could be stress related, which is what my pediatrician thinks. As ironic as it sounds, I hope that there is something wrong with me that I can fix. I would be delighted if I'm intolerant to fructose, and with a fructose free diet I can reduce my symptoms. It is just so depressing not knowing a way to fix my symptoms. I can't "learn to live with it."
As of now, I plan on forgetting the EFI diet and instead taking the advise of my dietitian and gastroenterologist. I'm not saying its not valid; I just don't think it is working for me. I'm conflicted about what aspects of it I should keep following, at least until I see a dietitian (although I was told that the dietitian would be to help my nutrition/weight, not my symptoms).
What I have to do right now is cut out the fructose in my diet. I was given this at the doctors office
http://www.healthsystem.virginia.edu/internet/digestive-health/nutrition/low-fructose-diet.pdf
but it is a little vague
Can anybody give me specific resources/advise on a low fructose diet?
Thanks for reading this. I'll update you guys if my IBS gets better/worse
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Hi Matt
I am a fructose malabsorber. I had to do quite a bit of research to figure out how to handle my fructose problem. About two years ago I posted a message with links to three detailed papers on fructose malabsorption and IBS. They are quite technical and informative. The second paper contains a table (Figure 2) that list favorable and unfavorable foods for people with this problem. I use it a lot perhaps you may find it helpful.
I don't know if your GI doc explained that it is the ratio of fructose and glucose in foods that you have to watch out for. In other words, if a food contains more fructose than glucose it can present a problem. If you want me to posted a detailed explanation for you I would be happy to do so.
I noticed that the handout you were given did not say anything about wheat and other grains which can also be a problem for some fructose malabsorbers. I won't worry about it at the moment but you may find you will have to limit but not eliminate the amount of food containing wheat that you eat.
Although managing my fructose consumption helps a lot with my IBS symptoms it does not eliminate them. I need to follow other dietary management techniques too. Maybe you will be luck and managing your fructose consumption will be all you need. 
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Re: Syl
#340552 - 01/07/09 10:42 AM
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Thanks Syl.
You had mentioned in an earlier post that the ratio of glucose to fructose is what matters. This is helpful to know, and helps me understand why some foods can be bad, like apple, and some can be fine, like pineapple.
I found this
http://www.nal.usda.gov/fnic/foodcomp/Data/Other/herr48.pdf
which gives a breakdown of fructose and glucose on a ton of foods
I had no idea that wheat could be a problem. I think, however, the main source of fructose for me is apple/applesauce, mangoes, and fruit juice. I can't fairly establish a cause/effect relationship, but last night, I felt the gassiest I've ever felt. I felt like vomiting, and this prompted me to call my GI doctor. Anyway, part of my dinner was homemade applesauce, and I also had a drink and a dessert with HFCS and fructose, respectively.
Anyway, all that's left to see if this helps. I shouldn't be getting my hopes up
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Re: Syl
#340553 - 01/07/09 11:25 AM
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Syl
Reged: 03/13/05
Posts: 5499
Loc: SK, CANADA
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That is an excellent reference source. You will find it quite helpful. Ask if you have any more questions.
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Most of the information in the source you gave in your email is also available in the USDA food database.
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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I'm guessing your weight loss could be these three possibilities.
1. you are not eating enough for fear of getting sick
2. you aren't digesting your food because you possibly have D too often (don't think it is this)
3. you actually have another GI malfunction like Chrones or celiac sprue (I think it is this)
Do the other tests ASAP. It usually is good to start with the easiest and move to the more difficult, but personally I feel your losing weight like that is not FI or LI but something else.
There is scientific evidence that probiotics have worked in the few clinical trials that have been done, but there is no evidence that it works for everyone (didn't for me).
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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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I hope you do find some specific thing like fructose intolerance or lactose intolerance that you can address and clear up all your problems. That's really the Holy Grail for everyone diagnosed with IBS and I hope you find it.
And good for you for following up with your gastro. Her plan to do a colonoscopy/endoscopy if you don't show improvement soon sounds like a very sensible approach. Some people get real relief from drugs like anti-spasmodics or anti-depressants; I know my Family Practitioner says many of her IBS-D patients get great relief from Elavil. (I didn't - phooey.)
As for which part of the EFI approach (if any) to stick with until you see your nutritionist, my suggestion would be to keep building Soluble Fiber into your daily diet for now. In particular since your gastro wants you to add fat to keep from losing more weight make sure to eat higher fat foods only when you have a nice SF "cushion" first. Then talk to your nutritionist about it and see what she says.
As for your mom blabbing, I know it's embarrassing and maddening but maybe you could just remind yourself she's worried about you and looking for help and reassurance. A child who isn't "thriving" weight-wise is a scary, complicated nightmare for a mother. It doesn't make her spilling the beans really the right thing to do but try to cut her some slack if you can.
Please do keep us posted about your progress and good luck.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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My GI doctor seems to agree with you (although I don't know what 'FI' or 'LI' stand for)
First of all, I already had bloodwork done, and was tested for Crohns and Coeliac disease. My doctor stated that she is seriously worried that there is something more to my IBS because I shouldn't be losing weight. The doctor told me that she has had cases where all tests come out negative but there is sometimes something still wrong. In my case, if I keep losing weight, shes going to end up doing a colonoscopy and endoscopy on me, which I really am not looking forward to. Part of why is that it would suck if after going through that, nothing could be identified or treated.
As Sand said, I'm hoping of finding the holy grail in fructose intolerance. I know its not only lactose intolerance, because I hardly ever have dairy (the test is just because my doctor wants me to start having dairy).
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Syl, can you tell me specifically what drinks are good for a low fructose diet? The main things I used to drink were apple juice, grape juice, and gatorade, which are all high in fructose. Literally the only drink in my house right now that doesnt have HFCS, corn syrup, and does not come from a fruit high in fructose, is orange juice. Well, I have milk, but I am to be tested for lactose intolerance, so I have to wait on drinking that to isolate the effect of fructose.
Thanks
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FI means fructose intolerance and LI means lactose intolerance. GI is gluten intolerance.
Your doc is right that weight loss isn't an IBS thing, unless a person has relentess D (someone I work with is having that and weight loss but she is in denial).
My 2c is that you should have another GI test. I had a false positive once or could have been a subsequent false negative. The symptoms of GI are D and bloating and loss of weight. The test shows up negative if you haven't been eating gluten.
Yeah that scenario of a colonoscopy would suck! and wouldn't be necessary, except for your weight loss points to something more and an absolutely positive IBS diagnosis is not sound IMO, nor is blaming it all on fructose reasonable. But I understand the desire to want to have something that you can do something about, i.e. FI, you avoid fructose and are fine; GI, you avoid gluten and are fine. That would be great!
Your mom shouldn't be telling people if you don't want her to but when you accept having an illness and become unembarrassed of it and you choose to tell people yourself, it makes it so much more liveable. When you realize that everyone occassionally has the things you have often and that is all, it makes it less shameful and not so stressful. It takes a long time to learn that though, but if you knew how private I have always been about things and the experiences I have had that make me now say to just be open about it, you may be more impressionable.
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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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The range of commercially available juices and drinks with low fructose is rather limited. Citrus juices like orange and grapefruit juices are fine. More exotic juices like pomegranate, pineapple and most berry juices are okay too if you can find them as pure juices. Unfortunately, many exotic juices contain pear or apple juice to sweeten them. You have to read the label carefully.
I make concentrated raspberry, strawberry, blackberry or blueberry juice from fresh and frozen berries which I dilute with water and add some white sugar to sweeten it. I put the berries in a pot, let them thaw if frozen, add a tablespoon or so of water and heat until water just boils. Mash the berries and then strain through a cloth. Store the concentrated juice in the fridge and use as wanted. For example, sometimes I use it with sparkling water or soda. The carbonation does not bother me. Also, I add a tablespoon or two of juice to the water I use to make oatmeal in the morning
By the way - white corn syrup is fine. It is made solely from glucose. Again you have to read the label on corn syrup bottles to figure out which one is okay.
I hope this helps a bit.
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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I know this doesn't belong in the 'eating' section but I figured I'd post it with my own thread
This is graphic, I'll try to describe it as best I can
After having diarrhea yesterday, I saw a pale [white] colored, string-like thing in my stool. I do not usually see this, only sometimes, usually after diarrhea. As I remember, there were a few, each in different pieces of stool, on the surface 1-2 cm long. I called my doctor to ask, but she isn't in until Tuesday.
By the way, I occasionally have mucous in my stool, but as I'm aware that is characteristic of IBS.
Could this indicate some disease other than IBS?
Edited by mcem222 (01/08/09 01:55 PM)
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Get checked for intestinal parasites.
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IBS-D since 1999...mostly stable..i do cheat too.Bad me.
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