What to do next....biologics vs elimination diet?

[LNS87]

So I'm in a big dilemma that at this point is just making my head spin and making me nervous. Let me explain the situation and I would LOVE your opinions or advice to help me decide what to do.

So my GI doctor has decided I need to go to biologics after failing Lialda, Asacol, Canasa, and 6MP, and of the 3 biologics she gave me the option of, I have chosen Remicade since it has been around the longest and is the most well-researched. Paperwork and pre-testing is all done, and first infusion appointment is this coming Friday. I have talked to my GI, her PA, a colorectal surgeon from Rush, my primary doc and other people with IBD and all agree at this point this is what is best for me medically as I have been in a flare for 5 months now. Meanwhile, my mom suggested i get food allergy tested through my primary doc's office so I agreed to do it, and am just now getting some of the results. She is convinced (based on her personal experience) that I may have food allergies/sensitivities that could be causing the inflammation even though the scope and biopsies said active UC. I have been told to avoid dairy, eggs, and gluten based on the results so far, and I will find out more when i see him March 7th but that is the soonest they could get me in.

So where do I go from here? Medically, Im told I need to start Remicade and that has scientific research backing it, but the other option is to try to eliminate the foods i am showing allergies too and see if it helps however there is not a lot of solid research evidence that this would be helpful. My GI and her PA have both cautioned against this due to their experiences with patients trying alternative treatments. The Remi has tons of serious possible side effects, eliminating foods does not however it may not fix the issue and inflammation could get worse in the meantime. I can do both - eliminate these foods and also start Remi but then I don't know which one is truly helping so how do I go about all this? I also know once you stop Remi you really can't go back on it due to developing antibodies so Id hate to waste the one chance I get with it. I am so overwhelmed and frustrated with all of it right now and I need advice.

 

[mickey]

Certainly address your food sensitivities immediately! That will help reduce inflammation and you will feel much better. Stay true to it for as long as possible prior to any "cheating" and get to know your body's reaction to certain foods/drinks. Do not forget about reducing drinks to water; which will be your best friend.

Remember, meds are a bandaid, but you have to figure out what else may be causing the issue. If you don't change your diet (food/drink), you won't get the best results. If you are in Chicago, feel free to contact me. I can refer a great allergy test place. I went to Northwestern and they did all these blood tests,pricks, etc., and no results (which was nuts because only a month or two before I was in ER for anaphylaxis shock allergic reaction to food). I went to this other doc (eastern/western) and she did a test developed by NASA (non-invasive) and immediately all these food sensitivities popped up on computer and it showed level (from 50-100) as to how sensitive my body was to various foods, as well as the inflammation level of various organs in my body. It was a good snapshot of health. Amazing how dead on it was, as I eliminated those particular foods and felt almost immediate reduction in bloating, etc...Can be quite helpful. Her name is Martha Howard, on North side of Chicago. She is trained in Eastern medicine as well and Eastern treatment of issue is wonderful. Good luck!

 

[durwardian]

Yes, put off the Remicade until this has a chance. Call back to the allergy place and do stand-by, or find one that can see you now. I am very happy with the results of allergy testing, wish I had gone a long time ago. But you have to live it. If it is food, you are going to start recovering very quickly.

 

[shamrock15]

I am going to vote the opposite and say pursue the remicade. If you have been flaring for that long, you have a serious chance of scarring and there isn't an exclusion diet in the world that will cure scarring. I agree that food can cause some issues, but I think it's a little too far down the line right now. I have been on remi for over 4 years now, and am in remission for the first time in over years with the disease. I have also had 6 surgeries due to crohn's, and 3 of these could have been avoided with remicade.

Here's what has happened for me - my diet has opened up because of remicade, my asthma has disappeared, I have gained back healthy body mass, I am working full time, travelling, enjoying life again. I haven't had side effects from remicade aside from some acne (not even a greater frequency of colds and flus). While there are potentially dangerous possibilities for it, please remember that ANY medication including simple pain relievers have potentially dangerous side effects. My body carries a lot of damage because of what crohn's did to me before remicade -arthritis, joint pain, poorly healed injuries because I couldn't rebuild muscle properly, and two nearly fatal incidents. While I am not a fan of taking meds, I can honestly say that in my case I would strongly recommend remicade (unless there is specifically a known medical reason for that individual to not take it).

 

[Beach bum]

I would say do both , starting remi will help your inflammation go away and sorting out your diet will help you keep it away, so you might not need to stay on Remi for long.
Plus will it really matter which fixes you ? Getting better and staying better is all that really counts.
Good luck

 

[UnXmas]

What kind of tests did you have to identify the food allergies? What kind of allergies were you told you had?

I found food allergy/intolerance testing to be a complete waste of time, there are a lot of nutritionists and alternative health practitioners claiming to treat food sensitivities which have no value. But then there are actual food allergies - the most extreme end, you'd know if you had a food allergy because of the reaction. There is also coeliac disease, lactose intolerance, etc. So it really depends on what type of sensitivity you are dealing with.

However, if you have active IBD, then even if you do have food allergies as well and alter your diet, you're still going to need to treat the IBD.

 

[durwardian]

Yes, I agree that treatment and elimination are best. The allergy testing was done proper with numbers and needles. I had breathing issues, itching, rashes, sores in the mouth, ER a few times when A-shock set in.
My main issue is Benzoates, cinnamon, and doing great now without those.

 

[LNS87]

Thanks everyone for the advice so far. Here is a link to the food allergy testing I had done - being an RN i am skeptical of how valuable the results actually are but my primary doc does the testing in his office and my mom has had really good results from eliminating the things she is allergic to based on this test. Meridian Valley Labs

As of right now I am thinking I will try to eliminate the dairy/eggs/gluten for the next few days before my first infusion on friday and see how it goes. I don't know what else has shown up on results because I haven't gotten the actual report yet and wont until march 7th.

 

[UnXmas]

Thanks everyone for the advice so far. Here is a link to the food allergy testing I had done - being an RN i am skeptical of how valuable the results actually are but my primary doc does the testing in his office and my mom has had really good results from eliminating the things she is allergic to based on this test. Meridian Valley Labs

As of right now I am thinking I will try to eliminate the dairy/eggs/gluten for the next few days before my first infusion on friday and see how it goes. I don't know what else has shown up on results because I haven't gotten the actual report yet and wont until march 7th.

I wouldn't trust those food intolerance tests - it seems very similar to the tests I had which was a complete scam.