Does anyone really follow a gluten-free diet?

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Shelliesv
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Date Joined Apr 2009
Total Posts : 208
   Posted 5/17/2009 10:58 PM (GMT -6)   
I am very interested, but I just don't know if I could do it. I assume gluten-free means no bread of any kind? also no desserts, no packaged goods, no cereals, special foods, it sounds very hard!
Is there someone this is working for?
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Remicade, Apriso 4/day, Prednisone 10mg per day, Rowasa Enemas 2/day, Culturelle

Had 1st Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)


mumbles
Regular Member


Date Joined Dec 2008
Total Posts : 199
   Posted 5/17/2009 11:39 PM (GMT -6)   
I have just started it about a week ago, so it hasn't shown drastic help yet. It is kinda tough but it isnt the end of desserts. I tried some gluten-free chocolate chip cookies and they were very good. The major problem is that most gluten-free specialty foods can be pricey. But there are many foods in the grocery store that are naturally gluten-free(most meats, rice, vegetables, and fruits). I am still learning about what I can and can't eat. I even had a wedding this week for my brother. I couldn't have any of the desserts, but they did give me food that was gluten-free.

Some good links for recipes and guidelines:
http://glutenfreemommy.com/
http://www.gicare.com/Diets/Gluten-Free.aspx
http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html
Asacol-12 a day
1 Culturelle
1 Canasa
5g Fish oil supplements
1 Vitamin
1 B-12(for anemia)


princesa
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Date Joined Aug 2007
Total Posts : 2204
   Posted 5/18/2009 9:18 AM (GMT -6)   
It is an adjustment at first - particularly if you're used to the Standard American Diet. However, as celiac disease and gluten sensitivity become more and more widespread and well-known, the number of gluten free products on the market has exploded. There are GF breads, waffles, cookies, baking mixes and pastas. You can find a GF alternative for just about anything these days. And of course, many foods are naturally gluten free: fruits, veggies, meat, eggs, corn chips, potato chips, fries, candies, nut butters, etc. Many restaurants now offer gluten free menus, too.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
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.
 
 


allfortheking
New Member


Date Joined May 2009
Total Posts : 7
   Posted 5/18/2009 10:46 AM (GMT -6)   
I started back in February of this year a different kind of diet that has helped me tremendously. I no longer even take the Colozal I took last year. It started out when I started to read The Maker's Diet by Jordan Rubin. I highly recommend this book or his other which is called Patient, Heal Thyself. He was a sufferer of Chron's Disease and healed himself without the use of drugs. He recommends gluten-free and I don't agree with everything in the book but I took parts of what he mentioned and applied it to my own diet. Things like staying away from pork and shellfish made a difference. I then cut out most bread, foods and drinks that were using high-fructose syrup (which I noticed always sent me running to the bathroom) and I tried buying foods that were organic and natural. I eat a lot of fruit and veggies now. Stuff like strawberries, carrots, broccoli. The only meats I eat are chicken and fish. Both I prepare with little seasoning and if I order it somewhere I make sure it's that way also. I also drink a glass of pressed, organic carrot juice (sometimes I mix with a smoothie or another organic juice.) This has done wonders to my system. I also drink half a glass of Aloe Vera (make sure you get the fillet and not the whole leaf kind... Whole leaf doesn't have the inside stuff you really need.) In about 2 months most of my symptoms dissappeared. Seriously. I think there is so much stuff in food nowadays and it may be what is causing UC and Chrons Disease. I stay away from prepackaged food. Any food that looks like it's fake or has sweeteners, artificial flavorings...if you can't pronounce or understand most of the ingredients on the label just stay away from it. I don't go all gluten-free but I do think it can help.
Male / Age: 30
Diagnosed with UC in 2007
Used to take Colozal (5-ASA) but stopped taking it Aug. 2008.
Natural supplements: Aloe Vera, Iron, Vitamin B12, Liquid Chlorophyll, Acidophilus


sgtpeper
Regular Member


Date Joined Nov 2008
Total Posts : 87
   Posted 5/18/2009 11:05 AM (GMT -6)   
You can eat broccoli? I have the hardest time with veggies in the cabbage family - which sucks bc broccoli is my fav veggie :(

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16431
   Posted 5/18/2009 11:25 AM (GMT -6)   
There are different types of flour you can use that is wheat free. I was on the scd diet for a few months and I baked with almond flour. It didn't help significantly but it did help me to realize some of the foods that I am intolerant to.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa at night + Probiotics + Iron - So far so good!!!
 


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 5/18/2009 11:33 AM (GMT -6)   
they have frozen breads too that you just thaw out...

I followed it for about 3 months.. it helped maybe a little, but didnt stop my flare or disease
Kara, 22F Married.
Latest-Finally tapering off prednisone 5mg every week.. Staying on Lialda 2 twice a day. Currently colonoscopy shows remission. Apparently my symptoms are from my IBS side of my issues.
Medications:Prednisone 20mg, Lialda 2 twice a day, Align probiotic, Hyomax as needed.
I am so sick of this disease!
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/18/2009 2:15 PM (GMT -6)   
I do it. At first it was a struggle, but I learned. There are many gluten-free flours (like potato and tapioca) that work great for coating chicken, etc., pasta (made with corn), even cookies. Puffins make a gluten-free cereal with honey and it's really, really good.

I have tried to eat lo carb for years, so I don't miss the bread. The frozen gluten-free breads are just awful, I can only eat it toasted, like with a toasted cheese sandwich. I found some good gluten-free crackers.

Generally since corn and potatoes are OK, there are lots of goodies available. I lost weight but then discovered I could eat potato chips, yum.

I learned here that I could drink Heineken and didn't have to drink beer made for sorghum when I wanted beer, although it wasn't that bad.

I'm eager to hear if it helps you.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 5/18/2009 5:36 PM (GMT -6)   
I don't mess with the breads and pastas, but the GF waffles and cookies are pretty good. I do some baking with almond flour and it's very good. Muffins have the consistency of cornbread and the cookies are delicious.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
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.
 
 


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 6/1/2009 12:28 AM (GMT -6)   
I follow the SCD diet and am in remission.

Had a flare that lasted 6 weeks, I refused to take prednisone again. Diet got in back. It feels good to walk around without being changed to a toilet.
Pharmacy Student, Class of 2009.  Diagnosed 8/99.  Suffered for almost 10 years.  I am currently on the Specific Carbohydrate Diet and am nearing remission.  I feel fantastic!    I have lost so many years to this disease.  I decided to become a pharmacist to understand these drugs, and to help fellow sufferers of IBD.  My goal is to open up a pharmacy and take care of my patients(particularly explaining what the drugs do to you), compound special medications, and have a great practice. HAVE YOU CONSIDERED THE SCD DIET? IT HAS PUT ME IN REMISSION AND I PLAN ON GETTING OFF THE ASACOL SOON TOO!  (In remission since 2/15/08)
Meds 3200 mg Asacol, 2.5 mg Prednisone.  Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications!  For me, diet works...


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 6/1/2009 1:46 PM (GMT -6)   
blueclassring said...
I follow the SCD diet and am in remission.

Had a flare that lasted 6 weeks, I refused to take prednisone again. Diet got in back. It feels good to walk around without being changed to a toilet.


Where do I get info on the SCD diet?
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, starting 6MP

Discontinued: Prednisone, Remicade (bad reaction to second Remicade infusion)


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 6/1/2009 1:48 PM (GMT -6)   
I have been gluten free and noticed my allergies have decreased. I have a cold at the moment and am not feeling great as I have had problems coming off the pill.
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.


PrednisoneJunkie
Regular Member


Date Joined May 2009
Total Posts : 33
   Posted 6/1/2009 2:21 PM (GMT -6)   
What's harder than sticking to a strict diet is having a debilitating disease. My Dad has inflammation around his heart and he sticks to an even stricter diet than I do. ONLY fruit, veggies, beans, and fish twice a week.
27 / Male
UC Diagnosis May 2003
Survived 9 flares
Used prednisone, asacol 6/day
Alternatives: have successfully tamed 1 flare and counting without prednisone with massive doses of probiotic (along with asacol)
Diet: paleolithic (but I often cheat), non-smoker, non-drinker
Other problems: Childhood asthma


Ghena
Regular Member


Date Joined Apr 2009
Total Posts : 31
   Posted 6/1/2009 3:16 PM (GMT -6)   
hello Shelliesv,
i am also on the SCD.. So far so good. It takes discipline, but very doable. I am a medical resident and the hours are pretty tough, but i still manage.
the book to get for the Specific Carbohydrate Diet is called Breaking Vicious Cycle. It has changed the lives of thousands of pple. there are groups on the internet as well to help with support of this diet.
it makes ALOT of sense especially for pple who have crohn's (i have UC)
i am also on meds as well (6mp......) and supplements.
Let me know if u have qns. if anyone is gonna go Gluten free it makes way more sense to do the diet (it has to do with complexity of the Carbohydrate, u'll have to read the book to understand)
Good luck
feel well
Ghena 31male, UC since 2000

blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 6/1/2009 10:52 PM (GMT -6)   
Ghena,

I'm a pharmacist. Had colitis since 1999. Lost so many years to this diet, and my life has been given back to me with this diet. I wish our professions would understand the merit of it.
Pharmacy]<B><FONT color=blue>Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lost so many years to this disease. <FONT color=red>HAVE YOU CONSIDERED THE SCD DIET? IT HAS PUT ME IN REMISSION AND I PLAN ON GETTING OFF THE ASACOL SOON TOO!
<FONT color=green>MED-FREE!!!
Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! For me, diet works...


dudewhrsmybike
Regular Member


Date Joined Dec 2007
Total Posts : 38
   Posted 7/15/2009 8:14 PM (GMT -6)   
Can you update us Shellie? Have you tried the diet?
Excuse my ignorance but what is "SCD"

Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 7/15/2009 8:24 PM (GMT -6)   
I've been on a Gluten Free diet for about 8 months and it has done wonders for me.
I actually find it very easy to be Gluten Free. You have to be VERY careful and read labels. Gluten is in so many things I wouldn't have thought about (Kikkoman soy sauce for one).

Fortunately for me there is a Gluten Free bakery in Madison along with a Gluten Free pizza/Italian restaurant.
The bakery makes REALLY good bread. My wife actually likes it better than regular bread.
They also ship if anyone is interested: http://www.freshglutenfree.net/

There is also Gluten Free sections in the Grocery stores that I shop at.

Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 7/15/2009 8:38 PM (GMT -6)   
I noticed gluten-free cake at my local Starbucks recently- it was an orange cake. When mainstream places like Starbucks start offering gluten-free foods it goes to show that gluten's become a problem for a lot of people nowadays.
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine (stopped), 4800 mg Asacol
VSL#3 & Primadophilus Bifidus, Metamucil
Vitamin E enema or Asacol suppository occasionally


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 7/15/2009 8:50 PM (GMT -6)   
     My doctor had me tested to see if I were gluten intolerant before embarking on such a diet and it proved that I wasn't.  I do know a woman who has this malady and she sticks to a gluten free diet very religiously and is doing well.  However, if the tests show you can tolerate the gluten...why torture yourself?
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 7/15/2009 10:13 PM (GMT -6)   
I don't have any issues with gluten. I can eat as much as I want. It's fructose that I have issues with. I must say that I feel very fortunate. It would be much more difficult to give up gluten than fructose.
Joy - 47 yrs and counting; Dx Colitis Dec 06 (also had IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

What works for me: Fecal transplantation, Probiotics, Anti-inflammatory foods, No HFCS, No foods high in fructose, No artificial sweeteners, No pro-inflammatory foods when flaring, Vitamins, Lexapro (for stress).


ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 7/16/2009 5:50 AM (GMT -6)   
Christine1946 said...
However, if the tests show you can tolerate the gluten...why torture yourself?
It is my understanding that you need not be gluten intolerant to benefit from a gluten free diet - gluten can still exacerbate our symptoms. Is there someone out there with more knowledge on the subject that can say definitively whether this is true or not?
Diagnosed with UC in 1990.
Current Meds: None at present.
Supplements: fish oil, flax oil, glucosamine, CoQ10, fiber, aloe vera juice, probiotics.
Other: Raw Milk for breakfast. Currently exploring a raw milk fast one day/week.


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 7/16/2009 7:12 AM (GMT -6)   
Christine1946 said...
My doctor had me tested to see if I were gluten intolerant before embarking on such a diet and it proved that I wasn't. I do know a woman who has this malady and she sticks to a gluten free diet very religiously and is doing well. However, if the tests show you can tolerate the gluten...why torture yourself?


I was tested for allergies also and test results said that I should have no problem with Gluten.

The Gulten Free diet has done wonders for my UC. I have accidentally eaten Gluten on two occasions that I know of and I had bad UC symptoms later that evening and the next day.

Remember, most GIs will tell you that food has nothing to do with UC but I think most of us know better.

kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 7/16/2009 8:15 AM (GMT -6)   
Christine1946 said...
     My doctor had me tested to see if I were gluten intolerant before embarking on such a diet and it proved that I wasn't.  I do know a woman who has this malady and she sticks to a gluten free diet very religiously and is doing well.  However, if the tests show you can tolerate the gluten...why torture yourself?

I think one can have a gluten "intolerance" that may not be discovered with a test. I have read about that in gluten books, as well as read posts of others who didn't have the intolerance show up on a test, yet they went on the diet anyway, and felt so much better as a result.
 
Hobo- ditto

Colitis Confusion
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 7/16/2009 9:34 AM (GMT -6)   
I also have been using a combination of the SCD diet and Anti-fungal diet. It has helped me become 'normal' again without the dependency on steroids. I have been on it for 4 weeks now and have always went several times a day when I wasn't on prednisone. Now I go zero or one time a day and the blood continues to diminish on its own with each passing day. I have been off the roids for 2.5 weeks now for the first time in a year. Usually 2.5 weeks off the roids I'd be on the toilet 8 to 10 times by now.

Is it hard to stick with? Yes and no.

I failed miserably when I tried the diet back in January when I was in a super bad flare. It's all about ATTITUDE! My attitude at the time was everyone around me can eat anything they want so I should be able to as well. It's not fair. I caved in and lost the battle of will power with my gut.

Within the last month I was flaring even on low dose steroids and my doctor mentioned remicade since imuran was not working. I said no, what's the next option. He said colon removal. I said no and figured it was time to take matters into my own hands. And more importantly I changed my ATTITUDE along the way. Now my attitude is this: Rather then the whoa is me attitude, I have the attitude that it could be worse. I could have something like pancreatic cancer and a death sentence awaiting me in 6 months. Just because I can't eat cookies or pizza or bread or pasta doesn't mean I can't or won't be happy. I loved those things, but I love my HEALTH a lot more.

Even though I'm more hungry now, I am also a lot more happy. I'm able to have more energy to play with my children, because I'm not running to the bathroom to poop blood every hour or two. I have more energy to go out and do fun things with my wife. I don't have this disease figured out and I could flare again tomorrow, but I think I'm on the right track with this diet. Also, if you see positive results it's that much easier to stay away from the things you love when a craving hits.

I thought I wasn't going to be able to live a year ago when I gave up pop (pepsi and mountain dew). I was a 3 or 4 can a day guy for 12 years - I needed it to live or so I thought. For the last year I've drank filtered water exclusively and believe it or not I don't miss pop. I don't miss alcohol. I don't miss juice. I don't miss tea or lemonade. What I always go back to is that I miss my health more than all of those things combined. I took my health for granted and now I will try anything that is non-medical first.

Everybody has the discipline and will power deep down to do it. It helps having a strong support team and getting your spouse on board. But ultimately it starts with an I can attitude.
Asacol - 9 per day, Prednisone - 5 mg, Imuran - 150 mg, Omega 3 - 1 per day, Aloe Vera Juice - 4 oz, Culturelle - 1 daily, Vitamin D - 1 Daily


Adam1184
Regular Member


Date Joined Jul 2009
Total Posts : 93
   Posted 7/16/2009 11:14 AM (GMT -6)   
Someone already asks this but i doesn't look like it's been answered. What is "SCD"
Male
7/21/85
Diagnosed 2/08
10 Asacol per day
Trying to eat healthy
Misses chocolate and ice cream...

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