HealingWell
Search Close Search
☰

Q for those who are gluten free

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/21/2010 7:23 PM (GMT 0)
Hi all-I hope those in remission are feeling great and those who are flaring get to remission soon.

Anyway, I wanted to ask about gluten for those who avoid it or who have played around with this. My acupuncturist INSISTS I need to go gluten free because her daughter (who also has UC) did and it made a big difference for her. (though she also eliminated dairy and sugar at the same time, as well as started a new regimen of supplements and probiotics at that time, so I am not sure how you could tell that the gluten is the issue, but I digress) I really don't think gluten is an issue for me personally, but am willing to give it a try; if it helps that is awesome, and if not, we can finally put the issue to rest. I know this has been an active discussion here, and some have eliminated gluten, or tried it, so I am hoping you can shed some light for me.

So, for those who have tried this, where you tested to celiac or sensitivities to gluten? And for those who have done elimination diets, what were your symptoms prior to, and how long did it take once you had removed gluten to see a positive change in your UC symptoms, if it was successful? For those who have tried and it hasn't worked, how long did you go gluten free before reverting back, and was there any change at all?

Her daughter saw a naturopath who told her to go two months on this very strict diet. Would it really take 2 months to see a positive change?

I have drastically reduced gluten with zero change in my UC symptoms, but have never fully eliminated it. Like I said, I am willing to try it, but am not sure how long to go gluten free in order to expect results, if any, to occur. I would love some insights from those who have gone this route.

Also, if one really is sensitive to gluten, is it possible to live in remission for long stretches while consuming gluten? (or any other foods) It seems to me that food is neither a trigger nor a fix for me, but there are things I can't stomach during flares. But could the Humira, which used to work near perfectly but no longer does, have been masking food sensitivities all this time? I would think one would have trouble regardless, but maybe that is not the case?

Sorry for going on and on about this...thank you all for your input!
Posted 1/21/2010 7:41 PM (GMT 0)
Hi,
My daughter has UC and she is on a similar diet to the one recommended to the girl you mentioned. We did this partially because a GI from whom we sought a second opinion recommended excluding all dairy (goats, sheeps etc) as well as eggs, soy. We still give her eggs at the moment though very very little soy and no dairy. Her Doctor of Oriental medicine insists on no sugar (including fruit), gluten, dairy and several other things. That's what we're doing but it's only been under two weeks yet. We've been told to do this for about 3 months by the DOM and a year for the GI (and possibly indefinitely, I'm not too sure about what he would suggest).
Posted 1/21/2010 7:57 PM (GMT 0)
killcolitis, that sounds incredibly strict!!! My goodness-I can't imagine!

Have you seen any changes as of yet? Did they give any indication of how long it would take to see change? And what does she eat??

My GI (and my previous one as well) does not think dietary changes do much, unless the person has sensitivities to the foods themselves. He does not believe that food affects UC otherwise. But obviously, the acupuncturist feels vastly different. And my chiropractor/CST practitioner thinks environmental factors are more at play. It starts to feel like I need to live in a bubble eating nothing but veggies, fish and chicken.
Posted 1/21/2010 8:09 PM (GMT 0)
Right after I was DX'd I had my self tested for food sensitivities and allergies. Came back with multiple sesnsitivities...the big ones, that's right... dairy and gluten. That was a really difficult change to make, for many reasons. However, I believe that, for me, it has been a helpful aspect of my treatment. Regarding dairy, I am talking only about the cow (not the sheep or goat, different protein). As matter of fact, I avoid the cow all together...no red meat. I was tested negative for celiac. Oh, I also have eliminated processed, refined sugars (interferes with the healing process). Honey, syrup, sweet rice syrup, evap cane juice-OK.
I suppose the idea with the diet is to reduce the "stress load" that the immunce system has to deal with. There are many other ways to do this as well. I have also found that slippery elm (Robert's Formula or RF Plus), and tons probiotics help. I have found two probiotics that I really like (one from Whole Foods and one from my chiropractor called "Florastor").
This condition is so strange and there are numerous factors that likely play a contributing role that it is sometimes difficult to really say what works versus what simply gives you a sense of control and comfort.
Posted 1/21/2010 8:16 PM (GMT 0)
Before going on a strict diet, isn't there a simple blood test that can easily determine if someone has a gluten intolerance?
Posted 1/21/2010 8:36 PM (GMT 0)

A Phlying Phish said...
Right after I was DX'd I had my self tested for food sensitivities and allergies. Came back with multiple sesnsitivities...the big ones, that's right... dairy and gluten. That was a really difficult change to make, for many reasons. However, I believe that, for me, it has been a helpful aspect of my treatment. Regarding dairy, I am talking only about the cow (not the sheep or goat, different protein). As matter of fact, I avoid the cow all together...no red meat. I was tested negative for celiac. Oh, I also have eliminated processed, refined sugars (interferes with the healing process). Honey, syrup, sweet rice syrup, evap cane juice-OK.
I suppose the idea with the diet is to reduce the "stress load" that the immunce system has to deal with. There are many other ways to do this as well. I have also found that slippery elm (Robert's Formula or RF Plus), and tons probiotics help. I have found two probiotics that I really like (one from Whole Foods and one from my chiropractor called "Florastor").
This condition is so strange and there are numerous factors that likely play a contributing role that it is sometimes difficult to really say what works versus what simply gives you a sense of control and comfort.

So you tested negative for celiac, but you were positive for gluten sensitivity? I think it would be beneficial to me to get tested for allergies/sensitivities, but I wasn't sure how precise and/or detailed those kinds of tests can be.

I am taking slippery elm, but so far no change. I am taking a pill form though-do you take the liquid or do you take pills?

I am currently using 4 packets of VSL#3 per day, which equals 1800 billion live bacteria. It hasn't been helping much, I have to admit. I am also trying bee propolis and am interested in trying turmeric, but thus far, nothing I take and/or eat seems to make the slightest difference, aside from the pharma drugs. IDK-I am diligent about taking my supplements and I feel like I give them enough time to kick in-but it just doesn't seem to help!

I don't particularly enjoy trying things willy nilly either-if I were able to find out what I am sensitive to, if anything, I think it would make it a lot easier.

Thank you so much for your response!
Posted 1/21/2010 8:40 PM (GMT 0)

BabeintheWoods said...
Before going on a strict diet, isn't there a simple blood test that can easily determine if someone has a gluten intolerance?

This is what I would like to find out and do first as well. If there is no other way of knowing besides making the dietary changes, so be it, but I feel like I have wasted SO much time (and money) on things that haven't made a bit of difference that I would like to know what I am dealing with (if anything) when it comes to allergies and/or sensitivities before just taking shots in the dark with the diet.

I guess I need to make appts to deal with this. I guess I should do to the GP or GI first for a referral?
Posted 1/21/2010 9:12 PM (GMT 0)
SUpa,
This is a hard one and I'm sure you'll get lots of contradictory advice. First, my daughter is very young and so what was told to us by a pediatric GI may not apply to adults with colitis. He says that about 15% of UC (in chidren, I guess, since that's who he sees) is actually allergic colitis which has been misdiagnosed. He has seen many cases of UC in children which improve or resolve when certain foods are removed but obviously many that don't. For several reasons, he suggested this for my daughter (due to her particular case). He also said no beef. I don't know why he said no goat's, sheep's etc. dairy but her did and our DOM agreed. So, it's all been removed. It is indeed very difficult. In chinese medicine, everything must be cooked well with lots of vegetables for such a condition, they call it the "100 degree soup", so, she eats a lot of porridge, soup, stir fries, casseroles, etc. No juice and nothing raw. The DOM says she would never recommend going back to refined sugar and flour (which she never had anyway) but that within a year her diet should be a lot broader. We will see. As for allergy vs. sensitivity, she's being tested for food allergies soon, but her last allergist said allergies are not related to UC. The pediatric GI said cow's milk protein intolerance could cause colitis and allergies can cause colitis. Some suggest an elimination diet where you go on an elemental diet and introduce foods one at a time very slowly to identify problematic foods. I know many naturopaths have a test for food intolerences which is supposed to identify problematic foods not identified in conventional allergy testing. We haven't had this done, a lot of people say it's bunk while others swear by it. Maybe someone else will be able to share their experience with this. Good Luck
Posted 1/21/2010 10:25 PM (GMT 0)
I know that many people have had success with elimination diets, but to me, there are so many variables involved and such a diet seems to me so onerous, that I am glad I was able to be tested for food allergies.
Perhaps any doc will do this, but I found a local Integrated Practitioner with an interest in these things. We drew a couple vials of blood and then in a couple of weeks the results came back with a planned diet that involved strict rotation of mild to moderate foods. I eventually reintegrated these foods, but have remained off of gluten and dairy. Except for the summer of 2008, (when I discovered “Boston House of Pizza”) the end of which saw a huge flare. I don’t know if my over-indulgence flared me up or not, but (needless to say) I’m back on my diet now.
As far as allergies and food and relation to UC, I think it's likely that if you talk to 10 docs, you'll hear 10 answers. Matter of fact, my (above mentioned) doc says that this is an "idiopathic illness" because "idiot doctors don't know what it is or how to deal with it."
I thought that was cute. If you do not know an Integrated Practitioner you might try "Findadoc.com" and see what comes up.
I started flaring again in early Dec 09 and was just about to give up on the whole diet thing. After all, what's the point if I'm still flaring, right? Well, I was as close as I've yet come to going on an immunomodulator (probably ok, but I'd like to avoid as long as I can). My doc said to Tighten up the diet and takes lots of slippery elm and probiotics. So at a local natural food store (I wrote Whole Foods above, but I think it was a smaller local store, WF probably has it anyway) I got a probiotic that I don't remember the name of. At my chiropractor I got a probiotic called Florastor and a powder called "GI Revive."
GI Revive is a ghastly tasting (but apparently effective) powder (they try to make it taste like peach) that contains all sorts of good things like slippery elm.
So, I take 1 of the unknown probiotic and 2 of the florastor every morn and night w/ food. I read on another post on this site about Turmeric, so I've been trying that (Curcumin) and have also been pleased with that (1 morn and night w/food) Additionally, I take 3-4 capsules Gaia antioxidant and Quercitin (good anti-inflammatory). Fish oil, and lots of it. Plus standard dose of daily vits. My doc also put me on Low Dose Naltrexone, but I decided that it was not being particularly effective, so I dropped (for now).
I suppose that the way I look at it is that I don't know what causes UC or causes it to go away, but I do know what I can do to facilitate a healthy digestive and immune system.
Posted 1/21/2010 11:24 PM (GMT 0)
That was very well put Phish! Thank your doc for us,,,b/c reading that made me laugh!

I to am at the point where doc says it's time for an immunomodulator & I am just not there yet, I have however altered my diet & incorporated some new supplements & probiotics into my diet that I KNOW have made vast differences in getting me to remission.
I tested negative for celiac but I know gluten bothers me so I have drastically reduced the amount of gluten (if any) within my diet. All I do is read labels...at the grocery store, at the nutrition store to ensure I know what's in the food.
To be honest, the items I consume or give to my kids that have the least amount of ingredients seem to be the best for us! Makes good sense right...something so simple!
High fat bothers me so I am avoiding meats that are not organic or first cut. Beef does not seem to be a problem for me but I have cut back eating it b/c I simply cannot afford organic cuts of beef all the time!
We are strictly organic on all meats now b/c I know my body cannot tolerate the steriods/antibodies. If we can't afford it, I don't buy it & we skip the meat period! Plus realistically, my kids don't need that stuff either!
As for sugars, can't have artificial sweetners so I stick w/good old sugar, only in my morning coffee though & only half a teaspoon. ALL THINGS IN MODERATION seems to have become my theory at this point I guess. I also make sure there are no yucky things like "mono or dyglicerides" in our food, & high Fructose corn syrup is just extra artery clogging junk our bodies do not require. I also cut out anything w/carrageegnan which was a BIG problem on my urgency issue which has improved drastically. That test was easy b/c it was in the creamer & I thought the coffee made it worse as anyone would think...but not in my case it was the stuff I was putting in it.

As you mentioned Laura, it's no easy task at our ages to adapt to new ways of feeding ourselves & quite frankly, nobody knows enough of who, what, why or where w/this condition to convince me I have to STOP eating.
The more i know about me, the less I know about colitis!
Posted 1/22/2010 3:53 AM (GMT 0)
The Naturopath gave me a blood test for food sensitivities, and the gluten sensitivity was high (but not allergic). He also was insistent that I follow a strict diet without the foods I was sensitive to, take some supplements like slippery elm, and I did feel much better. I also started probiotics at the same time, which probably helped a lot, too. But I wasn't completely well. His plan was to add back some of the foods over time. But I decided to try Remicade and see if that worked for me (and it did).

Now I find the gluten makes me really bloated, a different kind of discomfort than the UC. So I still avoid it as much as possible. And I guess I still avoid most of the foods that came up on the list, it's not that hard.

I have been looking into organic, local beef, it's pretty easy to find around here and it seems if you order in bulk it's not too much more expensive.
Posted 1/22/2010 4:42 PM (GMT 0)
I have also sought out the help of an integrated physician, who ran a few stool tests, one from
entero labs (enterolab.com) and my daughter was gluten sensitive with a high score (highly sensitive)
Check out the web site, the drs. there think much of America is gluten intolerant to some degree.
She has been gluten free and is doing much better for 2 months now. I know it's hard, but it seems once your body spits it out, your craving goes down.
She was also treated for an unidentified parasite with a 3day course of Alinia. We swim alot in a river every summer, and come Sept / Oct she starts to flare. We thought there was some correlation, cause she drinks alot of the water (she's autistic also).
Anyway, I know alot of GI's say diet has no effect and nothing to do w/ IBD, but really if you think of it, how can it not? It's worth looking into, but some testing might point you more specifically to something.

good luck!
Posted 1/22/2010 6:13 PM (GMT 0)
When I first went gluten free, it was difficult emotionally. all those yummie foods on the grocery store shelf...all forbiden. And then to be at work or social functions and not to allow myself to participate in the eating component. I felt like I was really missing out and would do so forever. But then an interesting thing happened. I learned to cook. I found that just about everything that I used to eat and relied on others (restaurants, frozen or otherwise over-processed foods, etc) I could make for myself and usually better. Turns out, I love to cook. So, these days if there is something I want, I find a way to make it myself.
There are numerous websites and cook books and magazines catering to the gluten free diet. Also, you will find that many restaurants are recognizing that there is a (somewhat) lucrative culinary market (See PF Changs and Outback, among others). There are even gluten free beers available (see Whole Foods and BevMo). Bard's Tale is my favorite when grilling. Can't wait for the weather to warm up!
As troubling as change is (and it is, even change for the better), eventually it all becomes normal again. Just life. Just the way things are. And really, things are ok. It's just that we often have a hard time accepting the way things are. Keep in mind here that accepting just means realizing the truth of what is happening. It does not mean that we chose not to experiment with what could be.
Dang...didn't mean to get all philosophical and junk.
Posted 1/22/2010 7:28 PM (GMT 0)
i agree with you spooglesmom

one the problems regarding GIs and their advice on diet is that it's not a gold standard - that is, these diets haven't been through controlled tests and trials that drugs have, therefore cannot be recommended.

with drugs, the GI has control and exact knowledge of your treatment plan. food, on the other hand, is very very difficult to track. even though i try to avoid gluten as much as possible, its nearly impossible since its in everything! what i try and do is minimize the bad stuff and maximize the good stuff (fruits, vegs in my situation as i do believe UC varys from person to person)

furthermore, the lack of research in regards to alternative treatments is due to limited funding. how much funding, research, promotion do you think a gluten-free diet receives? first of all, there's no money in it and boy a chronic disease like UC is a gold mine - we're on this stuff for the rest of our lives. we do live in a capitalistic society after all. whats good for shareholders is guaranteed to be not good for you.

so that said, i think everyone should do their due diligence and find out whats right for you. my GI is a bit more candid about diet, but at the same time he is restrained from full out supporting it - he'd get in a lot of trouble if he did
Just remember, eating healthy is good anytime - regardless of whether or not you have UC.

Post Edited (geer) : 1/22/2010 12:33:10 PM (GMT-7)

✚ New Topic ✚ Reply