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Elimination diet has me scared of long term.

This might end up being a long post because it includes summing up some of my long complex history dating back to 2004 I believe.

It was weird how it first started, I had some minor symptoms related to IBD like being prone to heartburn but mostly I was normal and healthy. One day I was eating chips and onion dip and felt bad, so I put them aside, and I kept feeling worse and it stuck with me for days, then weeks, I thought it was food poisoning or something, eventually went to the doctor, they ran me through anti-biotics and such, my best results were from protonix. I was about 99lb.s at the time at 5'11". My symptoms included frequent vomiting of all food consumed, diarrhea, malaise, loss of appetite, constant discomfort in stomach I can only describe as the feeling of having eaten a wool sock.

It wasn't until that summer I got to a GI doctor who diagnosed me with a severe case of Crohns and put me on Remicade, I saw immediate results from it and soon was in remission. In time I was able to eat a normal diet with minor side-effects.

As time went on I began to have cramping and diarrhea and had no idea what was going on, it usually started at the end of an infusion period and we began to move them closer together. Eventually I was struck with terrible pain and diarrhea, cold flashes, and couldn't figure out what it was, I went through colonoscopies and such and talk of changing my medication.

I noticed undigested red peppers or tomatoes in my BMs so I cut out foods with them and saw immediate improvement, but little did I know this was just the tip of the iceberg.

In time after I was moved to an adult doctor but with a worsening condition, though I had been switched from Remicade to Humira. At this time I had also begun to develop chronic abscesses on my glutes, most likely the result of a fistula.

I was also having a lot of issue with motility of food, I would eat food, and it would sit in my stomach and I would bloat until I vomited.

In time I would identify that I was gluten intolerant, intolerant to sugar-replacers like sucralose, high fructose corn syrup etc. oils like canola, corn oil, the majority of fruits, vegetables and legumes including more 'friendly' ones like potatoes, even if I have meat stewed with potatoes it's enough to make me have impeded digestion and diarrhea.

So I've finally completed a total elimination of all irritations so far as I can guess and here is my current dietary options:
-Lactose products of all types are safe EXCEPT greek yogurt which gives me terrible cramps and diarrhea, weird because people talk up the benefits of greek yogurt so much
-eggs
-white meats and fish, no beef, pork is okay, I have not yet found a brand of any type of hot dog I can tolerate, and only one brand of turkey burgers (jenny-o's)
-Udi's bread
-Annie's mac & cheese
-Ice creams not containing HFCS

In stark contrast with some of the things I normally couldn't eat, I have frozen yogurt bars containing blueberry and strawberry seeds I can tolerate with no negative effect, and taco bell hot sauce packets I use to spice up food despite the ingredients containing many things that even in small amounts often make me ill

Rice is often safe but it's a case-by-case basis.

The thing is these losses of food have been incrementally worsening so this leads me to believe that something in my digestive system is deteriorating. I've tried digestive enzymes, glutamine, turmeric, apple cider vinegar, some other natural OTC anti-inflammatory drugs and literally nothing works.

Further more, and I know this is a big no-no in most cases, I've been neglecting to take my humira, now let me explain. At first we kicked up my dose to once a week due to the chronic abscesses, it seemed they were linked to the end of my dose period, I was on a 2 week per dose schedule and would sometimes encounter insurance difficulties receiving my humira so they bumped it up to once a week to avoid it.

Well at first I would occasionally forget a few days to take it, then I'd get lazy about picking up the new dose or insurance would give me trouble, and I noticed I wasn't having issues, so I dragged out to twice a month, because that's also one less co-pay and I live on disability because of the severity of my symptoms, I don't have a lot of money.

At the old twice a month with a safe diet I had no issues of 'flare ups' or abscesses, so I continued at twice a month for a time to try it out, without consulting my doctor, because it was safe in the past it will be fine again and doctors will always err on the side of caution when it's their malpractice suit on the line.

Well at the end of last dose I held out an extra week or so in picking it up, and when I did there was another insurance hang-up and I didn't get it for over a month and a half and in that time I never developed an abscess, I haven't had a flare up and I've gained 9 lb.s.

Now I'm starting to outright question the diagnosis of Crohn's and wondering if there isn't something deeper at the root of my problem involving my digestive function, maybe in the liver or pancreas.

Now my doctor at first obviously questioned my ideas when I suggested things like gluten intolerance and other food intolerance, and sought to treat my issues with medications, but in time as I've had provable results through elimination diets he's come to trust my opinion but I think getting him to understand that there's something else at the root of this deterioration might be harder.

I'm going to inform him of my time off the medication on my next visit in January and that compounded with my weight gain should be proof enough that my issues are rooted in my diet.

So I'm wondering what kind of questions should I be asking, what kind of research should I be doing? What kinds of specific things cause the kind of deteriorating food tolerances like I've seen that I can look into?

I can't help but feel, reading around, my case is very unusual, when I read articles hyping up digestive solutions in weeding out meat consumption in favor of vegetable-heavy diets, frequent lactose intolerant, things completely inverse of my experiences, and it leaves me feeling very lost when none of the information I find is quite relevant to my experiences.
 

afidz

Super Moderator
Hello!
It really sounds like your elimination process is working well for you, good job so far!
Although your symptoms aren't presenting themselves as a typical Crohn's flare, remember that it is different for everyone, that's why it can be so difficult to treat but I do agree that you need to make sure there is nothing else going on. Its also awesome to hear that you are feeling so well, I hope that continues. I'm sorry I don't really have advice on what questions to bring to your doctor but someone will be along to give you advice on that!
 

David

Co-Founder
Staff member
Location
Naples, Florida
Greetings :)

When you did your elimination diet, can you detail the steps you took? For example, did you eliminate ALL foods and do something like enteral nutrition for awhile then add one back one at a time? If so, how long did you wait between adding new foods?
 
I guess it wasn't strictly an elimination diet but I avoided foods that I specifically had an idea might be giving me issues then tried them one at a time to make sure it was that food and not another until I was able to pinpoint ingredients that were causing effects.

It was over a very long timeline when I started but recently started taking large amounts of things off the menu, but it wasn't very scientific or methodical.

Things that used to give me minor symptoms began to give more severe ones so I had an idea from over the years what it most likely was that was getting worse, like potatoes and beef used to leave me slightly nauseated in the past so I was able to conclude that my tolerance to them had diminished.
 

David

Co-Founder
Staff member
Location
Naples, Florida
I say this out of concern and in a tone that is supportive. The way you're managing your Crohn's disease (which I do think you have) is terrible. Humira doesn't work the way you think. It'll knock down the inflammation and hopefully promote mucosal healing. As it does that, skipping or prolonging a dose likely won't result in pain or abscesses in the short term. But as the amount of Humira in your system goes down, then the inflammation will come back and thereafter the issues will start again. The dose interval is VERY IMPORTANT. Skipping doses of a biologic is a REALLY BAD idea as studies show that is when your body is most likely to start to create antibodies against the biologic. And when you create antibodies is when you start to no longer respond to that treatment. And as your elimination diet hasn't been methodical, we can't trust that you're truly avoiding the foods necessary to help you maintain or reach remission.

There are few things scarier than poorly managed Crohn's disease. Not only is your Crohn's poorly managed at present, but you're doing it in a manner that will shorten the useful period in which a very important medication will be viable for you.

I suggest going back to your doctor, being honest, and doing exactly what they tell you. As you do that, stick around here and begin to educate yourself about every facet of this disease to ensure that your disease is properly managed from here on out.

I'm concerned about you and want you well. PLEASE take care of yourself. We're here to help with that.

*hugs*
 
I have to say my doctors have been very little help in the past, even going so far as to put down the idea that my symptoms were the result of food intolerance and seek to treat it with more medication instead. If followed their advice of ignoring my dietary issues I'd probably be dead right now.

I've also had some nagging infections, and I know I'm not supposed to take biologics with them. Previously they were very miniscule, like inflamed hair follicles that typically go away after they pop. I had one on my chin for ages, it was at first an ingrown hair, and it was pretty bad, mentioned it to my doctor but he didn't seem to make any note of it. It receded to a scar but sort of would re-inflame at times, more recently patches around it got inflamed making me more concerned with seeking treatment for it.

I also have other infections on my hip and just below my belt line.

This was another reason for me stopping originally, and my next appointment was to be earlier this month but had to be pushed up for surgery, since I don't seem in immediate danger I didn't request to be seen as if I have an emergency. The one on my hip has pretty much stabilized and hasn't drained any pus but there's still a bruised looking area. The one below my belt line has gotten better but still occasionally has drainage. The one on my chin has never drained, it's almost cyst like at this point, I think I might have had it two years?

I'm fairly confident that my dietary limitations are under control, I haven't felt as good as I do now in years, even on prednizone I wasn't doing this well.

My point of stopping humira wasn't so much a complete stop, but rather, with addressing the infections, to see if my issue with abscesses was under control. They used to form within 2-3 weeks after my injection if I didn't take my follow up, and as this hasn't happened I believe them to be under control and largely a product of the diarrhea I was experiencing.
 
Saw my doctor finally. He was surprised at my 10 lb. gain. He's not too concerned about the infections and want blood work before I restart my humira, and I need to hook up with a dermatologist to get these infections, hair follicles and yeast infections taken care of. I hate the cost but I guess I should get it done now while I have only 3 issues instead of... well 4 or more.

It's kind of annoying though when the doctor says 'wow all this weight you've gained the medicine really works great' the medicine did shit as far as I can tell I was in terrible health until I changed my diet.

I really can't know how much it does unless I went off it and I don't want to if it's inadvisable but it also sucks being on it, unknowing, with all the side effects.
 
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