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Valorie
Regular Member


Date Joined Nov 2004
Total Posts : 64
   Posted 8/14/2010 6:29 AM (GMT -7)   
Hello All-
 
I have been struggling with a flareup of my Crohns and IBS for a few months now. I have  a new GI who switched me to Lialda and that has helped a great deal with the pain and major D. My main problem now is that I have spasms whenever I eat and am on a very limited diet. I really am just living on protein shakes and instant breakfast mix. I am tired and cranky alot of the time due to the pain and hunger. I have tried Bentyl, Levsin and Pamine for the cramping and none of them have worked. I have seen one nutritionist and one dietician. The nutritionist basically told me that yes I had alot of food issues- (also allergic to soy, lactose intolerant, and have GERD). She thought i was doing a good a job as possible and i just needed to keep trying to find foods that didnt make me sick- pay her copay and have a nice day. So fast forward another month and am eating less foods so i decide to try a dietician this time hoping she can give me food plans and ideas. So I saw her yesterday and she wants me to go for LEAP food allergy testing. Now the testing is not allowed in NY so I would have go to another state for it- it is a blood test and then working with a dietician afterwards. The closest state is Ohio which is 5 hrs away- then it would be working with the dietician over the phone which my insurance wouldnt cover- they only cover face to face consultations. She pretty much said to me there wasnt much she could do for me and that i needed to do this testing instead as she feels my issues are primarily food related. I mentioned that I dont necessarily agree with that- I think it a combo and that i think sometimes it doesnt matter what i am eating- just that i am eating anything at all. I also said that i am surprised that i would have the fast reaction i do to an allergy- within a few bites my guts start churning. she admitted that was not typical for a food reaction. She then sighed and said she would work with me but it would be the equivalent of finding a needle in a haystack to find foods that i can eat and that i can do that on my own. The irony is that is the exact phrase the nutritionist used. So I am frustrated, disheartened and confused. I really dont think i want to spend more money and time on her when she clearly doesnt feel she can help me. I also dont want to turn away a possible solution to my illness and maybe an explanation for all my symptoms. Maybe the LEAP program could give me that but i also dont want to spend money i dont have on snake oil cures.
 
So I guess to sum it up, I have two questions- has anyone had any experience with this LEAP program and any thoughts on diet? I am heartily sick of white bread, chicken, and protein shakes.. three months in it is getting old.
 
Thanks for listening.
Val

mlatida
Regular Member


Date Joined Aug 2010
Total Posts : 129
   Posted 8/14/2010 10:02 AM (GMT -7)   
Wow! It sounds like you've been through a lot. I don't have any experience with the LEAP program, but I am familiar with having problems figuring out which foods I can tolerate although I'm 2 years into diagnosis. My doctor thought I had IBS on top of the Crohn's. I realized that every time I change medications, my food tolerance changes, sometimes drastically. After I stuck out the symptoms for a couple months, they subsided as I got use to the new medication. Maybe the switch to Lialda was good for the Crohn's but bad for your food tolerance. Maybe ask your GI doc if you could try a different medication. Also, have they ruled out an infection? I suffered from several reoccurring C. diff infections, and they gave me nasty cramping.

Valorie
Regular Member


Date Joined Nov 2004
Total Posts : 64
   Posted 8/14/2010 11:37 AM (GMT -7)   
thanks for the replies. Yes i am going to skip the LEAP testing and cancel my followup appointment with the dietician. I am also going to call my gastro on Monday and see if she has other thoughts/meds/options for me. I am going to make alot of bland stuff this weekend and really put an effort into getting some more nutrition in me.

That is very interesting about the med changes altering food sensitivities. I began having alot more problems once the Lialda really kicked in so that may be it. I will look into that more and talk to the gastro about that as well.

Thanks for the help.
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