Going Gluten Free Triggered My Worst UC Flareup

[sad_panda]

I am 22 years old and was recently diagnosed with ulcerative colitis after having a colonoscopy done last week. This is my 3rd autoimmune disease, the other two being Hashimoto's and narcolepsy. A few weeks before my colonoscopy I was in the emergency room with the most severe pain I've ever felt, at first which I thought was a ruptured ovary but turned out to be an intestinal blockage. I also had a slight fever and felt really ill for about a week.

I've been told time and time again by doctors, family and friends to go gluten free and when I did it triggered this flare up which was the worst I've ever had in my life. Not only that, but a month or so into being gluten free (coming from a diet filled with tons of gluten) I felt no difference in anything except my feet werent in pain anymore. In fact it made my gut worse.

How can this be if according to everyone the source of all my problems is gluten "intolerance"? I don't know what's causing my body to develop so many autoimmune diseases so rapidly at such a young age, but at the same time how can I stay on this diet if after a month things only kept getting worse?

 

[DJW]

Hi and welcome.
I'm sorry you going through this.
Sending you my support.

 

[InkyStinky]

I'm so sorry to hear of your struggles!

Diet seems to be a "piece of the puzzle" for many folks with IBD, but most folks need a lot of trial and error to figure out what sort of nutritional plan they need at the moment.

Did you switch to "whole foods" (rice, veggies, etc) or use gluten free boxed/prepackaged products (pizza crust, bread, etc). Lots of gluten free mixes have additives that can bother IBD folks (guar gum, etc).

Are you cleared to eat solid foods? Check out these threads on the "IBD-AID" diet... it's an elimination diet that focuses on well-cooked/pureed foods to start with. It has a good track record of helping to relieve symptoms - might be a good starting place:
www.crohnsforum.com/showthread.php?t=47602
www.crohnsforum.com/showthread.php?t=71853

:ghug:

 

[InstantCoffee]

It's unlikely that taking away gluten was the issue, but rather what you replaced it with.

If you want advice you'll need to tell us what you are eating.

 

[sad_panda]

Hi everyone thank you all for your support.

When I made the switch it was a bit of both. I avoided gluten free breads as much as possible but had it occassionally. I mainly had meats by themselves or with lettuce. I did have products with brown rice and corn though. I really wasn't eating much different than what I normally had on a daily basis, just without the gluten.

 

[InstantCoffee]

Were brown rice and corn new to your diet? If so both can be sources of upset. Brown rice is very high in fiber and gives me problems (in fact many rice grains give me problems) and corn is mostly undigestable cellulose.

Otherwise here's some ideas

First theory:
If you substituted for the bread with more of another ingredient that could be causative.
Excessive meat consumption can have detrimental effects due to nitrogen content.

Second theory:
If wheat was your primary source of resistant starch. Though common white / non-whole grain breads are a weak source of resistant starch, if you removed it with no supplementation of a replacement this could result in dysbiosis which could lead to a variety of GI symptoms.

Try introducing a new source of resistant starch in its place like green bananas, psyllium husks, plantains or possibly oats. I have to caution on oats though because many say that the proteins are similar to gluten and one shouldn't consume oats within the first 6 months to year of going gluten-free.

 

[UnXmas]

A gluten free diet never helped me, it didn't make my symptoms worse though. Unless you have coeliac disease there's no reason to cut out gluten if you don't feel any better as a result of doing so.

It's possible it was just coincidence that things got worse after you stopped eating it. Crohn's fluctuates regardless of diet.

 

[wild_one353]

what causes disease?
In order of importance: vitamin d deficiency, low fiber diets, too much meat, too much refined sugar, too much omega 6 fats like corn oil and animal fat. Antibiotics which destroy the microbial diversity of the gi tract. Artificial sweeteners, glyphosate, preservatives. trans fats.

what might cure many modern diseases?? fecal microbiota transplants, see link below.

 

[UnXmas]

what causes disease?
In order of importance: vitamin d deficiency, low fiber diets, too much meat, too much refined sugar, too much omega 6 fats like corn oil and animal fat. Antibiotics which destroy the microbial diversity of the gi tract. Artificial sweeteners, glyphosate, preservatives. trans fats.

what might cure many modern diseases?? fecal microbiota transplants, see link below.

This thread is about gluten.

 

[RNGirl]

I so agree with Some of the other posts regarding additives to pre-packaged GF foods. I react to xanthan/guar gums etc. Trying a whole foods diet without additives greatly fixed my gut. GF foods are garbage, avoid them like the plague. I am also gluten free because I also react to fructose and fructans and wheat falls into that category as well. It really is trial and error to figure out what your gut can handle. I try to eat clean not from boxes with foods with additives and limit my trigger foods. I'm still in the learning curve.

 

[hugh]

A few weeks before my colonoscopy I was in the emergency room with the most severe pain I've ever felt, at first which I thought was a ruptured ovary but turned out to be an intestinal blockage. I also had a slight fever and felt really ill for about a week.

An intestinal blockage would be a combination of the condition of your intestine (scar tissue, narrowing, twisting) and the consistency of your stool..
It is quite possible that going gluten free could have a dramatic effect on consistency, it certainly did for me, and other foods that have replaced it, whether new or just more of ones you were familiar with) may have added to this.
Do you know how much scaring you have? Has consistency changed noticeably?

I've been told time and time again by doctors, family and friends to go gluten free and when I did it triggered this flare up which was the worst I've ever had in my life. Not only that, but a month or so into being gluten free (coming from a diet filled with tons of gluten) I felt no difference in anything except my feet werent in pain anymore. In fact it made my gut worse.

foot pain abatement sounds like a good thing, but I can see how you are underwhelmed by the results so far.
Going gluten free will shake everything up (bacteria composition and location, and intestinal permeability), so expect some trials and tribulations…..
If you have done a month then it should be settling down (unless something else that you are eating (GF stuff, other grains, ?, is causing issues (see last note about paleo AI))
Fibre is not always a good thing, so don't rush to get more in until you notice an improvement, keep to well cooked easy to digest foods

How can this be if according to everyone the source of all my problems is gluten "intolerance"? I don't know what's causing my body to develop so many autoimmune diseases so rapidly at such a young age, but at the same time how can I stay on this diet if after a month things only kept getting worse?

The theories on gluten are pretty solid, but it won't be a perfect match for everybody.
I would look at it like this (really clunky and clumsy) analogy (and treat it as a useful theory to be tested rather than a law to be obeyed) – if I wear a pair of shoes that doesn't fit (gluten) then I might get a blister (UC), sore joints(some other AI disease) or a postural problem (something else).
Just removing the shoes may not be enough, the blister will rub on any shoes now, the posture may have become a habit, and the joint may have suffered mechanical damage and never fully recover.
The blister might need rest, dressings, creams or even antibiotics. Posture might need physio or orthotics (or Alexander technique).
Giving up gluten might be a great step, but you probably need to address disbiosis and leaky gut……
which leads on to….

I am 22 years old and was recently diagnosed with ulcerative colitis after having a colonoscopy done last week. This is my 3rd autoimmune disease, the other two being Hashimoto's and narcolepsy.

You might want to read up on a diet called "the paleo autoimmune protocol" – Not saying you should try it, just that you could read up on a very plausible theory on the causes and development of diseases and then see if it makes any sense to your view of things and then think about whether you are well enough and in the proper space to try it and see if it helps…..
(one of the harder bits is going gluten free, and if you're already there then the rest of the diet would be challenging but it is only a month then foods are reintroduced.
I got the book through my library, and probably wouldn't buy it unless I really wanted to geek out on the science, as all the diet aspects are pretty well covered on the internet
It has been around long enough for you to check out peoples stories both for and against online

The Autoimmune Protocol
http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol

There are other diets that relate to GF diet that might be of interest, and reading up on the theories relating to disease doesn't hurt, If it sounds wrong then move on.........
Perfect health diet - Bowel Disorders, Part I: About Gut Disease (part one of four)
http://perfecthealthdiet.com/2010/07/ulcerative-colitis-a-devastating-gut-disease/