gluten free diet and flare controlled

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?

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?

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.

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.

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.

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.

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)?

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.

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.

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.

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

and fibre isn't just one kind either....the perception of fibre is definitely skewed.

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).