intolerance to foods

[beth22]

I am getting more and more frustrated on a daily basis. I am 5 months post c diff (at least the tests are negative) but am able to tolerate fewer foods as time goes on instead of more. When I had c diff I soon developed an intolerance to dairy - yogurt and milk. I could still eat butter and sour cream. Raw fruit and vegetables were also a problem. However, 5 months ago I had a colonoscopy with a stool transfer and it seems like things have gotten worse for me instead of better. I test negative for c diff, although some of the symptoms are worse than when I had it. Now I can't eat cooked vegetables either, or bananas, which I could before. I don't know if the preparation for the colonoscopy caused more inflammation or what. I've had all kinds of tests and the only thing that was positive was a breath test for SIBO and I'm supposed to see a specialist soon. However, I can't even tolerate baby food vegetables or fruit. Even a tiny bit of butter goes right through me. Has anyone had this happen to them? My doctor thinks I'm crazy. He told me to take vitamins, which also do not agree with me most of the time. His other suggestion was to put me in the hospital to do a workup - last place I want to be. I got the c diff either at a hospital or nursing home that my mom was in. Getting very depressed. I've lost a lot of weight these past 5 months post-c diff - much more than while I had the infection and took vanco. I might add that I teach high school - 5 classes a day and feel some days that I just am not going to make it til the end of the day. Any thoughts? Am still waiting for the results of a capsule endoscopy, where I swallowed a camera that supposedly took pictures of my small intestine - that was 2 weeks ago. I don't know if that will show inflammation or what, but meanwhile I don't know what to do.

[fire7163]

Beth:

C-diff can do interesting things to your GI system. I developed some food intolerances, but after I got things under control, they seemed to have gone into remisson. I'm on my GI's favorite diet. " See it, want it, eat it, enjoy it " It's one diet that's very easy to maintain. I would most definately see your specialist. In the mean time I'd try some Ensure to make sure that you are getting some nutrition. Try a can of each flavor to see if you can tolerate it. Lot's of luck

Fire

[beth22]

Thanks. I can't tolerate the Ensure much either because of the magnesium. The strange part is I can eat foods that have fat - like salami, a hamburger without the veggies, meats, even bacon. I'm wondering if I could have developed an allergy to the vegetables and fruit and should see an allergist.

[monacat]

cholestramine?(questren) ?? My mom uses it to treat her ibs. she takes a small spoonfull just before she eats each meal. it binds everything up. she used to get ibs so bad she wouldn't leave the house some days. it totally changed this. she swears by it. i also took it during my c-diff fiasco(prior to vanco treatment )and it really helped bind up the toxins and get them out of me. run it by the doc maybe?? good luck!!!!!!!!!!

[beth22]

Yes, I used the Questran also during my c diff for a little while. I remember it gave me some headaches, but it is worth a try. I still have a lot left. I'm just wondering if anyone else got food intolerances with c diff once they were off antibiotics and how long this lasted.

[Nancy1]

I'm almost 3 years post-cdiff, and I still can't eat much fiber. Beans, nuts, many vegetables (raw and cooked), some fruits (especially dried), lettuce, and so on send me to the bathroom. I had problems with fat for about 6 months after cdiff. And I still don't eat much spicy food, drink much alcohol, or take Vitamin C or anti-inflammatory drugs (NSAIDs).

[beth22]

Thanks, Nancy. I didn't realize it could take that long. I don't understand why it got worse after I went off the meds though. Did you lose a lot of weight also? I'm going next week to see the specialist about the SIBO - my breath test was positive for that, so maybe with the stool transfer I got some bacteria into the small intestine that shouldn't have been there. I know that the doctor went all the way up into the junction of the small and large intestine. I'm hoping that if that is part of the problem, that I will at least improve some. Do you have any suggestions for how to start introducing fruits and vegetables into the diet. I tried baby squash and that didn't agree, but sweet potatoes are ok. Is it just trial and error? My gastroenterologist suggested trying digestive enzymes, which I haven't done yet. On the side effects for those it stated nausea and D, and I've had enough of that during my long battle with the c diff.

Beth

[mayotte]

I also can't eat the same way I did pre c.diff. Many foods bother me, sometimes I make a choice to eat them, and every time I regret it. I am 2 years into being c.diff free. It can be very frustrating not to be the same as before, but for some of us that is the way it is. I hope you can eat more foods soon.

[carrie]

Hi Beth,
I'm one and a half years out and I still have many many food issues. I've really learned to live with it in the past few months but some days it still drives me crazy. I used the information off the website helpforibs.com. They really helped me understand the diet I now have to get use to. I call myself the carb queen now but it really took me a long time to get use to eating a more starchy diet, even my veggies are typically starchy ones. It would be very valuable for you to read up on soluable and insoluable fibre if you haven't already. I also use a bulking product like a soluable powder - metamucil, benefibre, innilun, acacia powder etc- they are all used for IBS. It took me months before I could get to the recommended amount but it has really helped. Most recently I have struggled with finding an energy product that I can use for longer cycling or running activities as most of them do not agree with my GI system. I finally found one this weekend that has so few ingredients I think it will work. I can not take and supplements such as vitamins and ensure etc. as I can not tolerate milk or soy. My drinks of choice are rice milk, peppermeint tea with rice milk and chammomile tea. That is all my stomach will allow. I find it very frustrating that many people and even my specialist have no idea what it is like, like I'm making it up or because of stress. I use to eat a salad for lunch every day, now it is soup as I try to get as many veggies as I can - but very few greens - I do put in peas but they are pureed and I use rice or noodles as my base to ensure I'm getting lots of bulk that helps slow things down. Do try and look at the helpforibs site as it really has lots of valuable information, some of it works for me and other stuff doesn't. There are many different therories about IBS and reasearch has never found a definate answer but when they do I hope my GI is still in business as I'll be taking the information straight to his office and having a bit of a discussion about the way he has treated this problem for me. I've gained all my weight back plus 10lbs. The heaviest I've ever been-this high carb diet is really doing it for me. At present I'm running 30kms a week, swimming three miles and a 2-3 hour bike ride and not losing a pound. I went to put on my golf pants yesterday and couldn't find a pair that would fit me, all to tight! I'm giving my system 3-5 years to settle and hopefully things will improve so I can eat out a bit more - I'm really missing that but at least I finally can exercise again and that is a hugh improvement over last summer. You will find foods that you can tolerate over others(I eat lots of carrots) and things should improve. I eat my bananas(and cooked peaches and bluberries pureed) with oatmeal in the morning and it allows my system to cope with the fruits much better.

[beth22]

Thank you for all the info Carrie. I will definitely check out the webiste - I hadn't heard of it. Carrots agree with me too, but lately bananas have also started giving me a problem. I will post what happens with the SIBO specialist. According to his theory about many with IBS a prior infection can trigger it and often it is because of an overgrowth of bacteria in the small intestine. My breath test was positive for that - not just slightly positive either, so I'm hoping that some antibiotic will help. I've posted before that I tried Xifaxan (Rifaximin), but could only tolerate it for 3 days and then tried again a week later and also managed only 3 days. HOWEVER, my symptoms did get a little better after, but now it's been a while and they are back to being not too good. It does give me hope that some treatment might improve the situation, even if only partly. I will post if there is any helpful outcome.

I read online about a supplement like Ensure called Enlive - it doesn't have a lot of magnesium. Has anyone tried this???

[Nancy1]

beth22,
I lost 27 pounds due to cdiff. What helped me to get my appetite back and stop losing weight was Primadophilus reuteri. That was the only probiotic I took that I know made a difference. My primary care doc has now recommended that I take VSL #3, and along with that I am slowly trying to add more fiber to my diet.

About adding new foods, yes, I think it's basically trial and error, because what agrees with one person won't agree with another. For instance, bananas were never a problem for me. Be sure to add new things slowly.

[sks001]

Beth -

Check out Resource Breeze by Boost which is only distributed through Walgreens so far. It's not thick and milky like yucky Ensure. It's more like a juice drink (orange, peach, wild berry & variety pack) and only has 1 mg magnesium compared to Ensure that has 100 mg. It's 250 calories and comes in a juice box with a straw.

http://www.walgreens.com/search/search_ ... e&x=20&y=7

They used to offer free UP shipping from their website, but they stopped that - grrrrrr. You can go into Walgreens and fill out a form & pay for it and they will order it free and go back & pick it up in a few days. I'd recommend this to anyone as it tastes really good and only supplement that doesn't make my 24/7 nausea worse. I see on the website they've added a few more things by Resource Breeze.

I empathize with you as I can gag down fewer and fewer foods each week that I used to be able to tolerate. I'm so fed up and tired with being so sick all the time as it will be 2 years in a couple months. Haven't been able to gain even one lb. of the HUGE amount of weight that I lost. I wish I could get out and work.

[beth22]

Thank you Nancy and Sandy. Nancy, the probiotic you mentioned is one I was going to see if the health food store carried so I wouldn't have to order it to be shipped on ice. I take VSL#3, but only in small amounts and that is the only one so far that agrees with me. I will go this weekend and get the other one and try it too or order it online if Whole Foods doesn't carry it.

Sandy, the drink you recommended is just like the Enlive that I read about. That one was also more of a fruit drink - it came in apple, berry and peach and drugstore.com had it, along with some other places on line, but the shipping was really a lot and you had to get a whole case and I didn't know if I could tolerate it. I will go down to Walgreens tomorrow and show them the name. I live on the west coast, so I don't know if it is called something else here, but they must have some central computer to look it up. I know when my mom had c diff (3 times) she couldn't tolerate Ensure either, but they had some fruit drink at the nursing home which she did manage to take and gave her calories and nutrition.

Thank you both so much. Knowing that others have gone through similar experiences and are still doing so makes it a little easier. My primary doctor thinks I'm exagerating the intolerances and says that he doesn't know of anyone else who has had c diff who complained of similar problems. Even the gastroenterologist seemed baffled, but he also said I should take Cipro to see if it would help as it probably wouldn't do any harm!!!!! It was the AB that gave me c diff after using cleocin cream first, so it would be the last thing I would use. But, I was feeling like a freak after they both told me that and now I see that I'm not the only one. We'll see what the specialist has to say next week. Hopefully, he is more knowledgeable about c diff.

[sks001]

Beth,

Ask Walgreens if they can order a 6-pack compared to a whole case to try it. They used to carry the 6-packs on their website, so they may be able to order it.

My CVS Pharmacy was also able to order it - depends on who their distributor is, but their cost was a little higher. Showed them the printout from Walgreen's website of their price, and they cut the price down.

[beth22]

Yes, thanks. I got the printout and plan to bring it to them. I typed in my zip code, but none of the stores in the area had it available, so they will have to order it. We also have CVS if Walgreens can't.