Gluten Free and Crohn's in the Colon

[realtormatt]

So I have basically come to the conclusion that I can control my crohn's symptoms with 20mg daily of prednisone for the rest of my days, which I dont want to do! I have basically just stopped taking all other meds, because I was sure nothing else was really working. I confirmed this as without the prednisone the Immuran, Remicade then Humira, and Asacol would not work. When I dropped them off, nothing changed negatively as long as I had my steroids.

So about 3 weeks ago I went gluten free to see and if I could come down on the prednisone. 3 weeks ago I also decided to try and taper the prednisone as well. I do take a host of other supplements, fish oils, probiotics etc...But all that has happened is my symptoms have flared up.

Now my question to those who are gluten free is where is your inflammation located? I have never had small bowl issues, everything always in my colon. Does gluten free not work for crohns in the colon since gluten is process in the small bowl anyway? I was told that one.

Did anyone find gluten free alone did not work, but going even farther, corn free, sugar free, dairy free had to be added as well? I tend to think I eat pretty well, i.e. not much processed junk. But I am pretty discouraged about the results from giving up gluten. As tough as gluten free has been I really dread trying to do the SCD.

 

[shmo]

I can't answer your question directly, but I have been told many times (from people other than doctors) that I should be taking gluten out of my diet completely. What I've found, to be frank, is I can't tell a lick of difference. I do try to limit my gluten because it certainly doesn't hurt, but at the end of the day, everyone is different. What works for some people with crohn's doesnt for others.

That being said, I have always had problems with sugar and dairy myself. Corn I've never heard of giving anyone problems except for the roughage in whole kernels.

I hope you can discover how to control your crohn's with diet alone. That is everyone's dream!

 

[mizgarnet]

This is what I have discovered- Gluten free is good and it relieves my bloating and some of my aches. I am going one step further and I am food combining. When I am faithful to the rules, life is much better. Last night I was not and I am paying for it today. I try to eat with a whole food approach. My Crohn's is primarily in my small intestines with a hint in my large intestines. If you decide to do SCD- please remember that you may not tolerate some things right away. You have to personalize it. It will help. I also try to eat more anti inflammatory foods and try to balance my ph levels. I also take Boswellia for inflammation. It has helped me. Just remember, what works for me may not be the answer for you. I am med free. I only have issues when I much up the works with what I eat. Restaurants are a challenge for me. I have no willpower when fresh baked bread with olive oil is presented. I can't ask for the bread to not show up because Ray loves and demands the bread. Let me know if you have any questions. I will be happy to share some of tricks I have learned over the years. Good luck and good health!
Wendy

 

[realtormatt]

I agree, I do I feel better gluten free as far as my general feel, energy levels, bloating and brain, but it has not done much in the way of Crohns symptoms. I have actually spent sometime this morning looking at anti-inflammatory foods, alkaline diet, GAPS etc...

I will have to say for being Gluten Free, I have watched my ingredients well, I have not been as strict on cross contamination. For example last night we went out to dinner for a friends birthday. Our waitress was not very good from the start I could tell and the menu was not easy for a gluten free person, so instead of giving her some complex instructions should was going to mess up anyway, I just chose a chicken burrito that the inside mixed seemed to be gluten free, so I just ate the inside out of the tortilla and left the wrap. Feel okay.

I have seen some good things on Boswellia, how much do you take? Also seeing things is Marshmallow root?

 

[Dazzafarr]

You could always try the "-if you can't pick it or kill it, don't eat it" diet... But that ones a little over the top...
I guess, in the end, eat what your body says to eat, not your head.
If something upsets you then don't eat it.
I have been off dairy for about 2 months now...
It's not too hard.... The stuff is worse for you than you think..
Personally I think dairy is a major link for problems full stop.
I find gluten free bread helps me a lot. I had gluten bread before just so I could push some pills down " must eat with pills " and I have reflux,blah blah blah etc...
It's obvious that sugar, glucose, gluten, dairy isn't good for us.
Dont completely exclude it but also don't serve as a staple.
Now, the real question... How does everyone tolerate alcohol? I want to drink in about a month so please let me know whether I will be ok or pray

 

[shmo]

Personally I've never felt I had a big problem with alcohol, but it might just be because I'm too drunk to care when the pain comes along .

Generally if I'm having a bad gut day, I'll avoid it. But a glass of wine here or beer there has never really made me think "I shouldn't have this".

 

[mizgarnet]

I take 1500mgs of Boswella if I am inflamed per day otherwise I maintain at 500mg a day. I had to play around with it to find my optimal dosage. The past couple of months I have not had to up the dosage to 1500mg. I am currently investigating Marshmallow root. I have not tried it yet. I am hoping the eating plan I have come up with works.

At Mexican restaurants, I order fajitas and let others eat the beans, rice, and tortillas. Never bothers me. If I want the tortillas, beans, and rice then I do the veggie fajitas!

Dairy is a no no for me. I just do better all around if I avoid it. I use organic coconut milk in my tea or coffee. Love coconut.

Alcohol- I can handle one ultra lite beer. I am not a big wine person but I can drink Pineapple juice with tequila or vodka. I do best with clear alcohols and I avoid the mixers. I am going to try gluten free beer. I just have not been drinking. I am a grandma after all!

Wendy

 

[Susan2]

Without wanting to offend anyone, can I suggest that you read all of the advice given, but then set out on your own path of discovery. Crohn's is extremely idiosyncratic and what works for one person quite possibly will not work for someone else. Milk and milk products, for example, obviously do not suit some people' systems but have always been lifesavers for me. I also find that white bread does not cause me any problems either; I usually eat sourdough white bread.

Having said that, some people, even without Crohn's, are better when they eliminate wheat completely from their diet, rather than just eliminating gluten. This might be worth trying, although it requires very careful reading of labels.

I am OK with a glass or so of wine, but not champagne (nothing with bubbles). Anything more than that gives me trouble.

 

[seaface]

I have UC in 75%+ of my colon and gluten free dosnt seem to help at all. I find it expensive to maintain during a flare as well, as gluten free breads and pastas are nearly triple the cost

 

[moosefeathers]

What you need to understand is although many crohn's patients are sensitive to gluten not everyone is. The information I have is about 55-60 percent. For those who are not sensitive to gluten, going gluten free will make no difference. You may be sensitive to other foods like, as you suggested dairy etc. If removing gluten made no difference I would start adding it back slowly to make sure you don't get worse, and then eliminate another common trigger, example dairy or processed sugar. Diet with crohn's can be very individual and eliminating food groups which are not necessary for you will only limit your nutritional options which can be very difficult for those of us with the disease to start with. Hope that helps. Also there are tests that can be run for food sensitivities so if you are having trouble figuring out what may be worsening your symptoms ask your doctor about having them done.

 

[Susan2]

I never have had problems with gluten. White bread - as good a quality as you can afford - would make your life cheaper and easier unless you actually test as gluten sensitive.

 

[Hope345]

My daughter (age 15) has stopped Glutten, dairy, and started to eat only organic foods. This has been a big process but doing this along with adding some herbs picked out especially for her symptoms has improved her by 75%. What is helping the most and what foods could have been contributing to her symptoms have yet to be discovered. She was unable to do the food allergy test because of her medications: immunosuppressants give false results.

Elimination diet or the anti-inflammation diet are another way to help figure out what foods she may be allergic to by adding one back at a time.

We also believe dairy could have been part of the problem. she drinks only almond milk. and distilled water.

hope you find what helps you.

 

[birdman]

How long after you went gluten free did you experience relief? I've not been diagnosed yet but doc thinks Celiac. I've gone gluten free - just wondering how long it would be before i can tell a difference - if any?

 

[wild_one353]

what food did you replace the wheat with? and also by the way, it probably not the gluten messing with our disease its the glyphosate aka roundup herbicide made by monsanto in addition to possibly other herbicides and pesticides that mess with our good bacteria.

 

[birdman]

what food did you replace the wheat with? and also by the way, it probably not the gluten messing with our disease its the glyphosate aka roundup herbicide made by monsanto in addition to possibly other herbicides and pesticides that mess with our good bacteria.

I've been gluten free 5 days and will test gluten free just over as month until my next colonoscopy. I'm eating cornchips, sardines, steak, bananas, jelly beans, reece cups and not much else. Oh and coffee. Tried coffee free a year ago - couldn't tell it helped. Also tried gluten free a year ago, but i missed a lot of gluten items that time around.

Thanksgiving day i started probiotics and that took care of 80% of my stomach pains - but I'd like to cull the other 20%. Tummy hurt constant since early last year. Feels better when lying down. Doctor says the probiotics helping and relief when lying down says to him it's not a stomach ulcer. He did a blood test for h pylori / antibodies - no results yet.

 

[wild_one353]

I've been gluten free 5 days and will test gluten free just over as month until my next colonoscopy. I'm eating cornchips, sardines, steak, bananas, jelly beans, reece cups and not much else. Oh and coffee. Tried coffee free a year ago - couldn't tell it helped. Also tried gluten free a year ago, but i missed a lot of gluten items that time around.

Thanksgiving day i started probiotics and that took care of 80% of my stomach pains - but I'd like to cull the other 20%. Tummy hurt constant since early last year. Feels better when lying down. Doctor says the probiotics helping and relief when lying down says to him it's not a stomach ulcer. He did a blood test for h pylori / antibodies - no results yet.

you should read the book breaking the vicious cycle, it suggests a diet free of certain sugars to help control symptoms, I've had my diarhea under control for 5 years, one bm a day, and only on occasion will i see mucus or maldigestion. The diet generally eliminates lactose and sucrose and other complex carbs. Iv'e tried following other advice in the book but it gets tedious, the best advice in the book is eliminating lactose and sucrose.

 

[birdman]

Thanks for the recommendation. Forgot to mention I have been eating corn chex cereal with milk as well as cheese. Eating some pudding.

wildbill_52280 do you also avoid gluten or only sugar / dairy?

If i see no relief after this month test - I'll test with zero dairy / zero sugar.

 

[Justanothercp]

I went to paleo diet, so cut out a bunch of stuff at once, but it made a world of difference for me.

 

[RNGirl]

I went auto immune Paleo 6 months ago. Doing quite well, but think I may be a histamine reactor with certain foods. Experimenting a bit with eliminating high histamine foods to see if I can improve a bit more. Currently, don't take any crohns meds.

 

[wild_one353]

Thanks for the recommendation. Forgot to mention I have been eating corn chex cereal with milk as well as cheese. Eating some pudding.

wildbill_52280 do you also avoid gluten or only sugar / dairy?

If i see no relief after this month test - I'll test with zero dairy / zero sugar.

good luck! some cheese is very low in lactose and may be tolerable like mozzeralla.

 

[seajay]

Hi everyone, just joined. I agree with Susan2, Crohn's is extremely variable from one person to another. The key is to learn to listen to what your own body is telling you. I became "lactose intolerant" when I started feeling nauseous with the small cloud of milk in my coffee or the milky taste of butter. So I just stopped eating anything tasting of milk and my Crohn's is quiescent now, I just need 1 gram of Pentasa twice a day to stay cool.

Another thing is that I regard my Crohn's as a blessing, and I accept it ! If I hadn't have had it diagnosed 27 years ago I'd never be having regular blood work, coloscopies etc. today. So I'm (reasonably) safe in the knowledge that any other nasties that come my way might be identified. So I'm not stressed about Crohn's, I'm positive about it and it's part of me. Remember, there's almost always someone else whose life is way worse than one's own.

I'm looking into the gluten/wheat thing so many thanks for this thread and for sharing your experiences with lactose and gluten. Best, Chris

 

[InstantCoffee]

It's different for everyone, but for me gluten is an extreme trigger. It will cause me to become violently ill within a few hours. I haven't had acid reflux since I cut it out.

 

[BriteMornenStar]

A while ago, my Gastroenterologist thought I might be a celiac because I had a really REALLY bad iron and B-12 deficiency, like the total amount of iron in my entire body was 5% and it was only in my blood, my organs were completely depleted of it. So he suggested that I go gluten free etc. I went GF and felt better, but a month later, he told me I wasn't a celiac and that he was treating me for Crohn's disease. Apparently the bottom part of my Small Intestine, whom I now call Lucy, was badly inflamed. I tried 5 times to go back to eating gluten, but each time I became really sick with everything, severe joint pain, diarrhea, severe intestine, gut wrenching pain like I swallowed a knife or something and them my left right leg, foot and knee swelled up. So, I was on steroids forever...like 2 months and afterwards my swelling in my body went away. Doc says I might have a "gluten allergy". So basically, I've become "that person" in the restaurant who can't eat gluten, dairy, red meat or any questionable seafood that could wipe me out. So now, me and Lucy have an understanding....:mad2: kinda. I'm still in the learning process of what "Lucy"can and can't eat, but we're getting along much better now...:drink: thanks for listening to my tirade...Hope this helps..maybe? :thumleft:

 

[ronroush7]

Gluten is a big trigger for me.

 

[teeny5]

I feel better with gluten free options and I have the disease only in the large intestine. I don't exclusively eat gluten free, but if I can get pasta or cereal that is gluten free I go for it. Gluten seems to trigger gas and cramping for me if I eat it frequently. I believe I have a sensitivity to it...which may or may not be related to Crohn's.

I also can't tolerate milk (cheese is ok), more than an Apple every few days, a large amount of carrots, large amounts of anything high fiber (whether gluten free or not), spicy foods, more than 2 cups of coffee a day (sends my GERD over the edge!), any roughage (salads) more than a couple of times a week. Alcohol seems ok, but some beers give me almost an allergic reaction (stuffed up nose right away) and others don't.

It's all very different for all of us.

 

[MmeMagpie]

Giving up the lactose made the biggest difference, for me. And, the days I don't eat wheat-based things are generally better.

I haven't given up ALL the dairy. I do put heavy whipping cream in my coffee (almost no lactose) and enjoy a small piece of Irish Cheddar from time to time.

Been doing a little experimenting with gluten-free baking. Lactose free milk comes in handy in this arena. When I'm satisfied that the gluten-free flour mix is a suitable substitute for real flour in most recipes, then I'll buy all of the ingredients and make my own mix for a fraction of the cost.