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Posted 9/12/2007 1:21 PM (GMT -7)
My Aunt in discussing my current issues w/her, had said something about my UC possibly being an allergy to Gluten (someone she knows, blah, blah, blah).......however, I have had two colonoscopies that showed UC, so wouldn't that rule the gluten allergy out?

TIA!

Beth

Beth, 31

UC Diagnosed March 2000

Lialda 2.4mg 1xday since 8/24/07 (prev. Asacol 4800mg day),Calcium and Vit D 500mg 2xday.

Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007

Prednisone 60mg 1xday, Simvastatin 20 mg 1xday

Diovan 80mg 1xday. Fosomax 1xweek 70mg. MCD may be from hypersensitivty to 5ASA drugs.

Posted 9/12/2007 1:30 PM (GMT -7)
Celiac disease has symptoms that are similar to UC. It's fairly easy to be tested for it.

Sue
dx proctitis in 1987

dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Posted 9/12/2007 4:12 PM (GMT -7)
Gluten allergy is different than gluten intolerance (Celiac). You'd have to be tested for both separately.

For gluten allergy, you'd have to have the scratch tests, injected tests, food challenge test and of course blood tests to see if there are actual changes in the blood to confirm inflammatory responses.

Gluten intolerance..Celiac...happens in the small intestine where the gluten actually causes damage to the surface of the small intestine and it loses the inability to absorb nutrients from foods. A biopsy of the small intestine would be done to confirm the disease.

You can have many things going on at the same time...and celiac disease can happen as well as UC...but a c-scope wouldn't be able to confirm it.

Leaky gut syndrome is sometimes a cause of some allergies, where larger molecules get into the bloodstream than should be...because the lining of the colon allows them to pass through.

So, if you think you have either...do the indepth research, compose the appropriate questions and then make the and request for tests from the doctor.

quincy

*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)

~diagnosed January 1989 UC (proctosigmoiditis)

~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)

~Bentylol (dicyclomine) 20mg as needed

~vitamins/minerals 

~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime

~Natural Factors Multi Digestive Enzymes with supper

~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)

~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)

My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Posted 9/13/2007 6:36 AM (GMT -7)
I've had all the tests - full celiac panel blood test, small bowel biopsy - everything came back negative for celiac disease. I've had the ELISA allergy test and it didn't show anything, but I know from doing trial eliminations I feel better when I eliminate gluten (and dairy) from my diet. An elimination diet is really the best way to tell if it's a problem for you - and it's free. But yes, there are alot of misdiagnosed celiacs out there. Check out the celiac forum to learn more.

http://www.glutenfreeforum.com/
Diagnosed with ulcerative colitis spring 1999

Possibly misdiagnosed

 

Maintenance dose sulfasalazine

Probiotics, l-glutamine and fish oil caps

Posted 9/13/2007 7:48 AM (GMT -7)
Quincy makes a good point, there is a difference between the two. My point was that the symptoms of celiac (gluten allergy) are far more similar to symptoms of UC. I had gluten intolerance after my surgery (a temporary condition that can be common after abdominal surgery) and the symptoms of intolerance are far less drastic. I suffered from increased gas and abdominal discomfort from the intolerance. Those symptoms of gluten in tolerance were no where near the intensity and degree of illness as UC symptoms.

Sue
dx proctitis in 1987

dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Posted 9/18/2007 8:29 PM (GMT -7)
Hi,
Wow, this subject line caught my eye - I started my 18 yr. old son on a gluten-free diet 10 days ago "just to see" if he feels better (various ongoing symptoms) and so far so good. But his appt. w/my GI doc isn't until next Friday. I'll check out that gluten free forum too - thanks!!!

Stacey
dx w/UC (pancolitis) March '06
Colazal 750 mg x 9 capsules daily
final week on Prednisone, 5 mg. daily
started 6-MP 8/13/07 (50 mg. daily)
Probiotics (Primadophilus Reuteri)
dx w/Type 2 Diabetes Nov. 2002
Glipizide 5mg. x 2 daily,Caduet 5/10 mg. daily, Micardis 80 mg. daily, multivitamin + calcium daily and one baby aspirin, CinndromeX (2 daily)
Posted 10/8/2007 10:17 PM (GMT -7)
I found this thread by doing a search for "Minimal Change Disease" and "gluten free".  I hope I'm posting correctly, as this is totally different from the only other message board I'm on, which happens to be the gluten free forum mentioned earlier.

Anyway, I was diagnosed with "colitis" over 20 years ago and then Minimal Change Disease a little over 4 years ago.  I've been in remission, without any medications, for 3-1/2 years now.  It's because of being on a strict gluten free diet.  A little boy on my son's soccer team has MCD and when I told his mom about the diet she put him on it immediately and he stopped spilling protein after only 5 days and is already tapering off the prednisone after only 2 weeks.

I don't have Celiac Disease, but a gluten free diet can be therapeutic for many different conditions.  Please consider it, whether you have Celiac, a gluten allergy or gluten intolerance.  It can't hurt you and could possibly help you a great deal.

Liz

Posted 10/9/2007 7:07 AM (GMT -7)
thanks everyone, I will be researching this and I think I need to get over thinking I can basically eat what I want, I really need to start listening to my body and learning what helps and what doesn't and what can aggravate symptoms of UC and also what can aggravate me anyway so I am dealing with the least amount of aggravation (certainly don't need an upset stomach on top of my cramping colon). Though with changing this med and not eating this food it's hard to know what is helping and what isn't.

Rice girl - what meds do you take for your colitis? The doc's and I belive it was caused by my taking sulfasalazine or asacol (5ASA's) which if it was not, then I want to go back to taking it but they don't want to chance it.......but I kind of do, I want to know, I want to be able to take it if I can. I belive I went undiagnosed with MCD for 6.5 years....but who knows, there could be a bunch of coincidences! Also, check out nephspace.org for info on MCD, i'm on there too as Beth75. After a month on 60mg of pred, my protein went from 4.7g a day to 3.2, now I am 60mg 1 day & 40mg the next, 60, 40 etc.
Beth, 32

UC Diagnosed March 2000

Hydrocortisone enemas 1xday

Lialda 2.4mg 1xday since 8/24/07 ;prev. Asacol 4800mg day,Calcium and Vit D 500mg 3xday.

Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007

Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

Posted 10/9/2007 7:49 AM (GMT -7)
Beth - I don't take any meds at all. That's why I think the gluten free diet is so great. No colitis at all anymore and the MCD is in total remission.
Posted 10/9/2007 7:59 AM (GMT -7)
aha, I don't think I will be as lucky, my mother also had UC and it is hereditary so I think that is what I have too, but I will just keep on looking, who knows, right???

I am so glad you were able to get this under control and be healthy, that is awesome!!!
Beth, 32

UC Diagnosed March 2000

Hydrocortisone enemas 1xday

Lialda 2.4mg 1xday since 8/24/07 ;prev. Asacol 4800mg day,Calcium and Vit D 500mg 3xday.

Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007

Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

Posted 10/9/2007 8:08 AM (GMT -7)
UC does not go away, it merely goes into remission.

Sue
dx proctitis in 1987

dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Posted 10/9/2007 11:49 AM (GMT -7)

I'm sorry if this pops up twice.  I tried to post and it disappeared.

I don't know if the colitis I was told I had 20+ years ago went into remission or is "cured".  All I know is that I suffered for years and when I changed my diet to try to clear up arthritis that I developed, my digestive tract cleared up too.  I no longer have bloating, diarrhea/constipation, bleeding or any of the other symptoms that I had for so long.  The digestive symptoms came back when I tried adding wheat back into my diet.  (And this is when I developed the MCD that Beth also has.) When I went fanatically gluten free, the digestive problems and kidney problems both cleared up.

I'm simply trying to say that trying a gluten free diet couldn't possibly hurt anyone and could potentially be a great help.  Since I no longer suffer with this, I won't post anymore here.  I just wanted to address Beth originally, since she has 2 of the same problems that I had and I wanted to share how the gluten free diet helped me.

Diagnosed with Psoriatic Arthritis, 1996.  Went away after eliminating wheat, eggs, soy and dairy from my diet.

 

Diagnosed with Minimal Change Disease, 2003.  In remission since 2004 after fanatically eliminating all gluten from my diet.

 

 

Posted 10/9/2007 11:55 AM (GMT -7)
There are different causes for "colitis"....if yours has cleared up, it's most likely not UC. Microscopic colitis does well with gluten free diet.

quincy

*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)

~diagnosed January 1989 UC (proctosigmoiditis)

~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)

~Bentylol (dicyclomine) 20mg as needed

~vitamins/minerals 

~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime

~Natural Factors Multi Digestive Enzymes with supper

~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)

~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)

My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Posted 10/9/2007 12:10 PM (GMT -7)
Plus, there are different forms of "colitis". ricegirl, did/do you have ulcerative colitis or some other form?
Pancolitis '04

Yet to go into remission, Flare-up since Aug 12th and still atempting to work in the midst of it

On Colazal, probiotics, Oriental Medical Tea & Diet, Greens+, Fish Oil

Posted 10/9/2007 1:08 PM (GMT -7)
I was in college and didn't have insurance.  They did a colonoscopy at a "cheap" clinic, told me I had colitis and should come back for a follow-up appointment, which I never did.  I suffered for years, but was afraid to go to the doctor again because they did the scope with no sedation and I was traumatized for quite a while.  A couple of years later I was told I had IBS and offered another scope to check for UC, but was too freaked out still to follow through.   I think I don't really belong here, so I'm not planning to post anymore.
Diagnosed with "Colitis", 1985.  Later told I had IBS.  Suffered for years until changing my diet.

 

Diagnosed with Psoriatic Arthritis, 1996.  Went away after eliminating wheat, eggs, soy and dairy from my diet.

 

Diagnosed with Minimal Change Disease, 2003.  In remission since 2004 after fanatically eliminating all gluten from my diet.

 

 

Posted 10/9/2007 4:15 PM (GMT -7)
just my two cents - based on reading lots of research and my own body, most, if not all of us two legged walkers would benefit greatly from reducing or, heaven forbid, eliminating all GRAINS ! we really don't need them and they are very tough on the old digestive tract - if you are a carb type, fruits & veggies should be all you need -i've been off all meds for hmmm, i think almost two years - i do really well when i stay strict with my diet - the thing about grains is they take a while to get out of your system even after you stop eating them -all i can say is, TRY IT !

diagnosed with pancolitis december 21, 2003

currently taking: NOTHING !

Posted 10/9/2007 4:54 PM (GMT -7)
ricegirl,
I doubt there is any problem with you being in here regardless of what exactly you had. The symptoms are going to be nearly the same and it is going to be hard to go through regardless. You still make a valid point, because many UCers have benefited from taking out glutten and high starchy type foods--case and point, the Specific Carbohydrate Diet has worked for many. The great thing is that you found something that worked for you and it is a blessing to not have to go through all the suffering anymore. You may still benefit from learning about works for different ppl, should your symptoms reoccur (common with IBD folk), heaven forbid. IBS very much related to diet, but it seems harder to pin down with IBD. Best of luck either way.
Pancolitis '04

Yet to go into remission, Flare-up since Aug 12th and still atempting to work in the midst of it

On Lialda (2/dy), probiotics, Oriental Medical Tea & Prescribed Diet, Greens+, Fish Oil

Posted 10/9/2007 6:02 PM (GMT -7)
It's worth experimenting with your diet to see if it has any effect. If it doesn't help you, at
least you know that too.
Proctitis - diagnosed April 2007 (symptoms starting in October 2006)

Flares treated with Rowasa enemas

Mild food diet (chicken, rice, collard greens, no sugar, no corn, no beef/pork, etc)

Posted 10/10/2007 6:22 PM (GMT -7)
Hi! I've had trouble controlling my UC with oral meds & pred, so now I'm on Remicade.  It seems to be working! For the past 10 days, I have been on an elimantion diet.  I decide to take the holistic approach and am seeing a holistic health practicioner/ certified nutritionist.  She helped a friend with his diverticulitis through diet and supplements.  I thought what the heck, I'll give it a shot.  She has me on a diet for leaky gut and yeast, eliminating yeast, gluten, corn, soy and cow dairy--plus supplements.  The diet is easy to conform to. Later on, I'll re-introduce these back into my diet to see if i have any intolerances to them.  I've noticed the yeast going out of my system and I feel really good.  My bm's are more formed and I do not have that gassy loose feeling any longer. Not anytime soon mind you, but eventually I maybe able to get off some or all of the meds.  We'll see how this goes, but in just 10 days my body already feels detoxified.  I feel trying this cannot hurt!!  If Remi doesn't work, i'll be looking at surgery. So I gotta give this a go!!

 

I was feeling really good after my 3rd Remi infusion and now after doing this detoxifying diet, I feel even better.  

 

Hope my input helps!!

 

Starting Remicade!!!!! 5th Infusion Sept 28th

Dx with UC In Mar 2004. Mainly Left sided, at times has skipped through the whole colon. Also have IBS.

Remission from April 2005 to May 2006

UC Difficult to contol since May 2006

150mgs of Imuran, Asacol 3/3x's day, Bentyl as needed

 

 

 

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