gluten free diet and flare controlled

Has a gluten free diet helped anyone with UC?
6
Completely - 26.1%
8
Quite a bit - 34.8%
5
A little - 21.7%
4
Not at all - 17.4%

 
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able8888
New Member


Date Joined Jan 2011
Total Posts : 6
   Posted 1/23/2011 11:02 PM (GMT -7)   
Hello.  First time blogging - ever!  I was diagnosed with UC at age 11 and am now 41.  Hospitalized at 11 and again at 30.  Was in remission for about 12 years (from 12 until 24) then flares almost annually.  Predinsone is the only thing that worked.  Remission again for about 3 years (35-38) then another horrible flare.  Found out I have an allergic type reaction to most of the drugs used to treat UC.  Have gone completely gluten free, almost dairy free and have reduced my intake of refined surgar and products made with refined sugars and feel pretty darn good.  Down to about 4 BM's a day as compared to about 20.  No cramping either.  Also, taking 25mg of DHEA.  Anyone else tried any of this?

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/23/2011 11:25 PM (GMT -7)   
I know it works for some people, probably those who are gluten intolerant. I'm fructose intolerant, not gluten intolerant.

Againstodds
Regular Member


Date Joined Nov 2009
Total Posts : 193
   Posted 1/24/2011 12:32 AM (GMT -7)   
Hi, I plan to try gluten-free food, and have specific questions. Can you please answer? Thanks!
I am not 'evidently' allergic to anything, namely, whatever I take, I do not see any immediate response.

1. How can I know whether I am gluten intolerance? bio-exam in hospital?
2. Do rice and millet contain gluten? Does your food include rice and millet?
3. I also take spinach, potato, egg, cabbage, do they contain gluten?
4. Do apple, orange contain gluten?

el greco
New Member


Date Joined Jan 2011
Total Posts : 9
   Posted 1/24/2011 2:38 AM (GMT -7)   
I've been playing around with gluten free lately. It seems to help, but I haven't gone a full day G-free so I'm still not sure of its benefits for me. Have yet to have a problem after a G free meal.

able8888
New Member


Date Joined Jan 2011
Total Posts : 6
   Posted 1/24/2011 6:56 AM (GMT -7)   
The diet I am on has required a bit of research and a lot of committment.  Going gluten free does not mean skipping a meal here and there that contains wheat.  You must go online and look up gluten free foods and stop eating those foods for awhile to see if you start to feel better.  Rice is absolutely gluten free.  So are fruits and vegetables.  Meats are also gluten free.  I found it to be very difficult at first because I was focusing on what I could no longer eat.  When I began to realize all the things that I could eat, it became much easier.  Most restaurants have a gluten free menu.  Many grocery stores have large sections of gluten free foods.  I can't stress enough how important is is to research what contains gluten and what does not. I do not have celiacs disease, but am sensitive to gluten.  For us with UC, sensitivities to foods can exacerbate or trigger a flare.  Unfortunately, we are all told that food has nothing to do with our digestive disorder, REALLY?!?!?!?  I find this to be completely rediculous.

Againstodds
Regular Member


Date Joined Nov 2009
Total Posts : 193
   Posted 1/24/2011 7:09 AM (GMT -7)   
able8888:
Glad to see your post.
I have 'restricted' my food, but not gluten-free. Right now, I eat: rice, potato, pork (a bit), spinach, celery, cabbage, flower-food (bread, cookie), corn, mushroom, apple, orange, grape.

But some say 'orange' should be avoided.

imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 3819
   Posted 1/24/2011 7:46 AM (GMT -7)   
able
congrats on finding your way to controlling your UC. No, gluten-free doesn't help everyone or it would be the first thing GI docs would suggest. What some do is order a celiac test (I took one 5 years into UC) and then tell you "no" you aren't sensitive to wheat/gluten. My test was negative so I did not remove gluten/wheat from my diet for 4 or 5 more years.

My dear spouse saw an article in an online newspaper (Huffington Post) that stated many more people were gluten intolerant than suspected. That is not allergic, just intolerant. I told DH I'd been tested medically and it wouldn't help me. But...my condition was so bad I was at the end of my rope and considering which nasty drug I would have to start next (Remicade or Humira is what my doctor said was next). So I thought "It wouldn't be hard to stop eating wheat/gluten". So I did. My bleeding stopped within a few days. OMG. No meds had ever given me any relief like that.

That was January 2010 and the beginning of my diet modification experiment (with one test case-me).
I have not eaten gluten/wheat since that time. Is that all it took for me to get better? No. Did I ever bleed again? Yes. But it showed me that in my case I had the ability to control my symptoms with diet. Removing gluten did not cure my UC and eliminate the rest of my symptoms however, just stopped bleeding so bad it looked like a bloodbath in the toilet.

After that initial success I began a serious diet modification that is based on the Specific Carbohydrate Diet. Along with removing wheat/gluten it also eliminates most carbohydrates, most starches, all sugar except honey and many other common foods.

I am not an overnight success, lol. I had to tinker with SCD because many of the allowed foods on their diet were not allowed by my colon. Before UC I was a big fruit consumer but my UC gut does not do well with fruit now, even peeled and cooked fruit. Fruit juices are bad for me. Starchy veggies also bad for me.
For God's sake what do I eat? haha I know, sounds like hell. It would be except that UC symptoms are worse hell so I chose diet mod. over severe urgency (gone now), D (gone now), bleeding (gone now).

Instead of stating what I don't eat it's easier to say what I do eat: all meat, fish and protein except soy and cheese. I eat non-starchy veggies except no broccoli/cabbage. Carrots, yellow squash, green beans, snow peas, etc are great for me. I love dessert so make biscotti and cookies and cakes from almond flour once or twice a week, just not possible to buy it. I eat nuts daily that I soak to remove natural enzymes then bake to make crunchy.

While healing I eliminated caffeine and chocolate but now healthier am able to sneak a small amount of both in with no bad results. Every now and then a half glass of white wine is OK (red wine is a killer for me, even organic no sulfite type).

I can also say that I tried SCD Diet previously and had no improvement so gave it up. I believe that was due to two things: 1) my flare was so bad nothing could break it and 2)the SCD diet was not strict enough for my cranky gut so I got mixed signals and no improvement.

Diet modification is not easy. If I could have gotten these results with pills I would choose the pills. I had no other choice left. Removing gluten is really easy and everyone should try it once. Don't rely on medical tests, trust your own gut.
In remission April 2010 after 10 years of UC with no remission ever
Jan 2010 began SpecCarbDiet (modified to remove dairy, fruit & juices,)
Gluten-free=bleeding stopped in 3 days, 95% remission in 5.5 months on SCD
SCDiet: Gluten/grain-free, starch-free, low carb, honey as sweetener
(9)Balsalazide+(6)Citrucel+VSL#3 daily, mesalamine enema as needed
Curcumin/turmeric pill, D3 5000, L-glutamine

IamCurious
Veteran Member


Date Joined Jan 2010
Total Posts : 2327
   Posted 1/24/2011 10:09 AM (GMT -7)   
I think going gluten free helps. I had been in denial because it does not cause massive flare symptoms for me. But I think going gluten free pushes me from 95 percent remission to 100 percent.

Since then I have noticed that gluten-free brown rice spaghetti and pasta tastes just as good as wheat pasta.

I have read recently that gluten intolerance affects one out of 133 people. But gluten sensitive is one if 7? (cannot remember the exact nbr, and cannot remember where I read it. Anyway it is more common than most think).
Male/59 DX ulcerative colitis Feb08, possible Crohn's colitis DX Mar10.
No Meds, allergic to Mesalamine. Remission since Mar10. Food journal instead of SCD. Psyllium seed + VSL3 especially helpful.

Boswellia, E. Coli Nissle (Mutaflor), turmeric, fish oil, S. Boulardii, OLE, resveratrol, multivitamin, extra D3, K2, C, high gamma E, magnesium, phos choline, glutamine. Lots of vegetables & fruit (but no plums), no soda, no HFCS, no trans fat, no shellfish, tea instead of coffee, watch gluten, few processed foods, no carrageenan.
Nature created all of the locks, therefore Nature has all of the keys

Ugh Just Ugh
Veteran Member


Date Joined Jan 2010
Total Posts : 1004
   Posted 1/24/2011 10:27 AM (GMT -7)   
I tired gluten free and it didn't make a difference. Playing with diet did help me though! I discovered that I am mildly lactose intolerant.
Jennifer
Current Meds: Remicade (5mg/kg), Rowasa (4g, as needed).
Past Meds: Canasa, Hydrocortisone Enema & Supp., Oral Mesalamines, Imuran.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6931
   Posted 1/24/2011 10:34 AM (GMT -7)   
If I get to the point where mesalamine drugs aren't working well anymore, I'll probably fiddle around with diet modification. Right now, though, I'm completely controlled (in a solid remission since my first flare ended), and am not about to quit using them to try different diets.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 

Nor_TX
Regular Member


Date Joined Nov 2008
Total Posts : 360
   Posted 1/24/2011 12:48 PM (GMT -7)   

I have had food issues for many years but was finally diagnosed with UC about 6 years ago.  I take Asacol and Remicade which have definitely helped.

 

about 2 years ago I was really feeling badly and after an endoscopy and colonoscopy the GI told me that I did not have Celiac disease but agreed when I suggested trying a gluten free diet.  I learned quickly that you cannot do this diet partially, but had to commit to it completely.

 

In the last 2 years, each November I go into a Colitis flare.  I have narrowed it down to the antibiotics I get when I get bronchitis/pneumonia each October or November and my flu shot. 

 

I am still in my flare up but things are better than they were a couple of months ago.

 

I have found that eating a completely gluten free diet does help.  The diet is difficult to be sure, and many days I have the “woe is me” attitude, but then I snap out of it.  I can honestly say that I do not consume any known gluten.  I have been CC’d on occasion, but that pain just mixes with my others.

 

My problems are made a little worse because I also have IBS, Lactose Intolerant, GERD and gastro-paresis.  Because I digest my food so slowly, I often have pain and nausea, no matter what I eat.  Once the food digests a little, the back and belly pain diminish, and my Zofran helps with nausea.   My diet is so much more limited than just being gluten free.  I can not eat fresh vegetables or fruit, any dairy, any tomato based products.  Meat is hard to digest and I suspect nighshades are making me ill.

 

Some days I just don’t know what to eat and resort to canned chicken or tuna, gf pretzels, jello, gf bagels by Udi, fresh salmon, shrimp, beef broth.  It all gets a little tiresome. 

 

So yes, I think going gluten free has helped me a great deal.  I would suggest that if you are thinking of doing this, you give it a 100% trial and see how you feel.  Anything less than 100% won’t give you an accurate result. yeah


Presently on: 600 mg. Remicade every 5 weeks
Venofer infusion every 5 weeks

B12 every 5 weeks

12 Asacol daily

Zofran as needed

Dealing with Colitis since 2003, Gastro-Paresis, Reflux, IBS, GERD and Gluten and Dairy Intolerance and last but certainly not least - Arthritis. Am officially a senior citizen - how lovely :P
"Food is in my dreams and in my nightmares!"

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2838
   Posted 1/24/2011 12:54 PM (GMT -7)   
Gluten free makes me feel better -- mostly less bloated -- but I don't think it had effect on the severity of my UC.
49 year old female attorney, diagnosed UC/pancolitis 1985.
Asacol for 20+ years with Prednisone & Rowasa for flares (But nothing since Remicade).
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some.
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow

Againstodds
Regular Member


Date Joined Nov 2009
Total Posts : 193
   Posted 1/24/2011 9:10 PM (GMT -7)   
Now, I started to avoid tomato and wheat food. I used to have noodle/pasta/bread, and I was not in bad flare-ups. I know it varies from one person to another, but how long does it take to see if gluten-free helps (in general)?

able8888
New Member


Date Joined Jan 2011
Total Posts : 6
   Posted 1/24/2011 9:35 PM (GMT -7)   
Do any of you find it frustrating that most GI Dr.'s say that diet has nothing to do with our condition? I know that for whatever reason, we were all predisposed, possibly genetically or environmentally, to present with colitis, but not sure why the doc's are so persistent in telling us that our diet doesn't affect our condition in any way. I really have to wonder why GI's don't have any kind of dietitian on their staff to at least help us with what we might need to avoid, individually, of course, as I know each of us have different intolerances. I've always only be told, "try to stay away from dairy, and don't eat lots of fiberous foods". Mostly they dismiss anything that they cannot prescribe.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6931
   Posted 1/24/2011 9:37 PM (GMT -7)   
When I asked about diet, my GI said that he couldn't tell me what to avoid, that I'd have to figure out what to avoid (if anything) myself. And I think that's the best advice a GI could possibly give about diet and UC. I can eat everything I did before.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 1/25/2011 12:19 PM (GMT -7)   
Able, I do find it frustrating, but that's how they were educated/trained. Most will treat only with meds and/or surgical procedures. You'll have to look to an alternative or complementary physician for advice on natural supplements or dietary and lifestyle modifications.

able8888
New Member


Date Joined Jan 2011
Total Posts : 6
   Posted 1/25/2011 3:40 PM (GMT -7)   
Princesa, I have been seeing an MD/Alternative medicine doctor for some time now.  He left the medical profession in part because of their lack of training in nutrition.  He said they spent about 2 hours TOTAL on the subject during his residency.  He is hard to get an appointment with, it takes about 6 months to see him the first time as he is so sought after by patients.  I have had a lot of success with him with diet changes and supplements.  Thanks for your reply. smilewinkgrin

able8888
New Member


Date Joined Jan 2011
Total Posts : 6
   Posted 1/25/2011 3:43 PM (GMT -7)   
Fruitgirl, I know that the Dr. can't possibly determine what we should and should not eat on an individual basis, that is why I think it would be great for them to have a nutritionist or dietitian "in house," or at the very least have one they can refer us to, and not be so dismissive about it.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 1/26/2011 2:44 PM (GMT -7)   
Every nutritionist I've talked to was totally clueless beyond the standard low residue diet stance. There are several excellent books that provide dietary recommendations for UCers.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 

Alba29
Regular Member


Date Joined Nov 2010
Total Posts : 253
   Posted 1/26/2011 2:47 PM (GMT -7)   
My GI had good success with the SCD for CD and encouraged me to stick with it for UC too.

quincy
Elite Member


Date Joined May 2003
Total Posts : 25817
   Posted 1/26/2011 3:03 PM (GMT -7)   
nutritionists and dieticians through friends' experiences with them.....what a joke.

No offense, but balanced nutrition is at one's fingertips on a daily basis. What's frustrating is that the n&ds do seem clueless. Individualised diets can be a start and tweaked with ongoing exchange. But from what I've heard is that if this or that causes discomfort or whatever "reaction", the exchange comes to a halt with frustration on both sides.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Symbicort/Airomir (asthma)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4000 IU
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2838
   Posted 1/29/2011 5:40 PM (GMT -7)   
I agree, when I tried to consult with Ns&Ds, all they knew was high fiber. Low fiber needs were completely foreign to them.
49 year old female attorney, diagnosed UC/pancolitis 1985.
Asacol for 20+ years with Prednisone & Rowasa for flares (But nothing since Remicade).
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some.
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow

quincy
Elite Member


Date Joined May 2003
Total Posts : 25817
   Posted 1/30/2011 1:52 AM (GMT -7)   
and fibre isn't just one kind either....the perception of fibre is definitely skewed.
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Symbicort/Airomir (asthma)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4000 IU
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

astar
Regular Member


Date Joined Feb 2010
Total Posts : 99
   Posted 1/30/2011 11:29 AM (GMT -7)   
Able, yes, it would be great if drs. said 'there is no one diet that works, but diet definitely plays a role in autoimmune disorders. do an elimination diet to see what works for your body'

I eliminated gluten and it did wonders for me. I now notice when I do a gluten blowout (homemade italian focaccia bread was the latest culprit) I get symptomatic almost immediately. I think it's worth trying as I was tested twice for celiac and came up negative, and did this as more of a 'test' for my body.

Another thing that I have pretty bad reactions to is high fructose corn syrup. ugh.

against odds, if you are gluten intolerant avoid wheat, barley and oats...just those things. quinoa, rice, corn, potatoes are fine. Just nothing with wheat. Which means flourless chocolate cake is totally acceptable, thank god:)
diagnosed 8/08 with left sided UC
female, 38 years old
colazal currently 3 3x daily
prenatal vitamin/iron supplement
vitamin d supplement
pre/probiotics
fish oil

Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 1/30/2011 12:20 PM (GMT -7)   
Gluten doesn't seem to affect me. However, foods high in insoluble fiber make my flares very painful.

In remission I can eat what I want and it doesn't affect my UC though certain foods do give me non-UC related stomachaches (most foods deep fried in batter, onions, tequila, beer).
Heather, 23 year old grad student
Ulcerative colitis from rectum to mid transverse colon, diagnosed 3/6/2009, symptoms for 2 years beforehand
In remission! <3
Currently on lialda 4x/day, azithioprine 150 mg/day
Allergies: penicillin, sulfa, bee stings, environmental (especially ragweed!), OTC meds as needed
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