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Any success going on a "celiac" diet??

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Posted 12/4/2009 12:07 AM (GMT 0)
Scheduled for my 4th scope tomorrow after being diagnosed w/proctitis in 2003 and u/c in 2007.
I am currently in the midst of a nasty flare that is prednisone resistant which has lead me to
the procedure tomorrow. After talking w/some friends who have Gluten allergy, I decided to see
what if any link there was to my u/c. I was actually relieved to find many listings to this fact on the
web! My question to everyone is, have any of you tried a "gluten-free" diet (which I know I've seen
attached to some of your names on posts!) and how it has worked for you? I was so surprised to find
out through my research that celiac is often times misdiagnosed & is considered auto-immune as well.
It's also been linked to so many other symptoms I currently have & conditions that some of my other family
members have had. It's as if the lights came back on today for me. If only I had looked this up sooner...DUH!

Thanks for sharing...
Posted 12/4/2009 1:58 AM (GMT 0)
you should get tested; most in here are not allergic to glutens
do you notice glutens cause you problems when not flaring?
Posted 12/4/2009 2:00 AM (GMT 0)
I was gluten free all summer and fall this year and I still went into flare in July. I just started adding gluten to my diet now and have no problems with it. I think different people have different reactions.

I didn't eat much gluten beforehand. I am a big rice eater. But i can see how it helps some people because it is hard to digest. You have to watch out, though, about the foods that replace gluten with other ingredients. Sometimes the ingredient list is so long, your gut must get confused trying to decipher it all.

Try taking gluten out and see what happens. But remember even things like soy sauce and pill casings have trace amounts of gluten so pay attention. If you feel better, then continue. Once you're past flaring, see how you feel and add a piece of wheat toast for breakfast and then see how you feel. Just pay attention...
Posted 12/4/2009 2:07 AM (GMT 0)
 Hi, I'm a new member who read some posts a month or 2 ago.  I think I have some very valuable info for you and many others.  I have a sister with celiac disease who is about 60 now.  She was diagnosed when she was about 4 (she just got lucky with a very good doctor when celiac was first recognized).  At that time they thought that children 'outgrew' celiac disease.  So when she was a little older and a little healthier she started eating gluten again (wheat, rye, barley).  She then developed ulcerative colitis, a very severe case, over several years.  Someone finally told her she had to eliminate gluten completely.  And she improved over a couple of years, but has to have twice yearly follow-up for life to make sure her UC doesn't get out of hand.

So now to my 'experiement'.  I started having pronounced symptoms of irritable bowel syndrome when I was in my early forties.  In retrospect I had celiac-like symptoms when I was very young (low iron, mouth ulcers, generally 'sickly').  about 3 yrs ago (I'm now 56) my symptoms became worse with bloating, gas and significant constipation.  Most important, I developed sacroiliitis and went through a lot of pain, physical therapy, etc.  I went gluten-free after a doctor suggested I try it since I had eliminated all dairy and still had all the IBS symptoms.  At that time I did not realize that SI joint dysfuntion could be related to gluten intolerance.  After a year of gluten-free eating, but with some 'cheating' I decided to become very strict and cut out all gluten.  My symptoms almost disappeared over the next year.  The SI joint problems were 'there' but more managable and the pain level was much lower. 

After 2 yrs almost gluten-free my younger siblings started having health problems; gallbladder, liver, etc.  So, for their benefit and my own I decided to find out if I was in fact a celiac.  After a 5 week 'gluten challenge' eating lots of wheat I saw a GI guy, had a biopsy and I tested negative.  No celiac disease, but he found inflamation.   After 3 months I had a blood test; negative.   But, most significant, my SI joints became very inflamed!  Bloating and gas much worse.   I'm being tested for gluten sensitivity within the next week.  I've also done lots of research.   My advice: Go gluten free whether celiac or not.  Especially if you have UC!!  Good luck. 

Posted 12/4/2009 2:09 AM (GMT 0)
I starved to death, and then went back to the way I was eating before...I guess I didn't need to be on a gluten free diet. I looked very Auschwitzy
Posted 12/4/2009 2:34 AM (GMT 0)
gfpamela; seems you went through a lot of experiments and procedures. Was getting tested for gluten intolerance too expensive?
Celiac disease is a small intestine problem: mal-absoption of food, bloating, gas. Gluten intolerance other than Celiac would be noticed when in remission. UC is not caused by gluten intolerance but I could see it triggering a flare.
Posted 12/4/2009 3:07 AM (GMT 0)
 I don't think too much; $99 with Enterolab.  But I won't get results for about 3-4 weeks.  I'll post results; am on pins and needles.
Posted 12/4/2009 3:10 AM (GMT 0)
I've always wanted a complete food allergy test...wonder if I can get insurance to cover it if the GI orders it?
Posted 12/4/2009 6:20 AM (GMT 0)
Celiac and gluten intolerance happens in the small intestine, not the colon...if you cannot break down certain carbs, that again is a separate issue, many confuse that with gluten intolerance or sensitivity and both can easily be assumed is IBS and/or UC.

It's good to get tested if there's consistency in your bms and you're not improving with UC meds.

q
Posted 12/4/2009 2:35 PM (GMT 0)
 

Quincy said...
(Celiac and gluten intolerance happens in the small intestine, not the colon...if you cannot break down certain carbs, that again is a separate issue, many confuse that with gluten intolerance or sensitivity and both can easily be assumed is IBS and/or UC.)

Please elaborate on this as I don't quite understand it.

This is my understanding of the whole subject:

1. Celiac disease is gluten intolerance which only affects the small intestine

2. Someone can be sensitive to gluten or have a gluten intolerance but not have Celiac disease

3. A gluten intolerance can mimic some symptoms of UC flare but this holds true for any food intolerance

4. Food (includes gluten) intolerance would not cause a misdiagnosis of UC if the diagnosis of UC was accomplished via visual examination of inflammed areas of the colon by a competant GI

So if you know you don't have Celiac Disease then eliminating gluten because you might be intolerant to it is similar to one saying you should eliminate milk, seafood, apples, etc. because you might be intolerant to one of those foods. You still have UC if properly diagnosed.

I'm guess I'm asking here...

Posted 12/4/2009 5:59 PM (GMT 0)
sounds good to me. Yes, there are all the different issues, and with Celiac, the very reaction to the gluten will cause destruction of the milia in the small intestine, causing the inability to absorb nutrients. One MUST abstain from gluten because of the destruction.

If someone cannot digest certain carbs, which is most often directly associated with gluten, the carbs can cause discomfort, gas and maybe diarrhea.

If someone doesn't digest foods well, let's say it's carbs again as the most obvious, it could be because of a fast moving digestive system. It could be because of an inflamed colon which will hurry whatever is in the colon out in a hurry.

I'll also throw in the aspect of controlling certain foods in the belief that it helps.....it might very well be if one's comfort level increases while digesting certain foods compared to be mentally freaked out at the very thought.

Some foods are easier to digest than others, there are foods that can aid in digestion that many with UC just don't eat for various reasons such as perceived "rules" or just the fact that the other foods as well contribute to discomfort, diarrhea and seeing pieces of them floating in the toilet.


Food itself has action in the digestive tract....that's why we eat certain foods, to help increase peristalsis, to help loosen stool, to help slow the peristalsis, to help firm stools, etc. They can work for us in many ways, but it doesn't mean we're necessarily sensitive to them. Comfort levels are subjective and not all people can eat all food, as much food or as often.

If one believes they are gluten intolerant, then get checked and make sure the proper diagnosis is made rather than assuming it's that. Proper terminology is important as well.



Gluten intolerance or food sensitivity won't cause the inflammation as does the pattern of UC.



Stool samples are a good place to start as well.

Oh, forgot to add that many can have what's called leaky gut syndrome. It's where larger molecules of certain foods can pass through the digestive wall (I think it's the small intestine) and get into the blood stream. The body may have a reaction to those molecules.

So, there are often different reasons, to me, none of which are connected to UC. But in saying that, there is extreme distress for all of us when what we eat makes us unconfortable.

My only concern is that many stop eating, especially carbs, which are a major source of fuel for our bodies and brains.

Been there done that, but once I was relaxed about the food issue with no consistency regarding foods and UC flares, it's made dealing with UC better.

Do I have food symptoms? yes....but they're separate issues.

clear as mud, right?

quincy
Posted 12/4/2009 11:19 PM (GMT 0)
o.k...I want to thank all of you guys for weighing in on this.

gfPamala, I hope you can finally get some relief when your test results come back. Your story is very interesting to me. I have to say
that the more I read really makes me wonder just what effects food allergies can have on our bodies, with that said, I have never had an allergy
to anything in my life but according to what I have read, positive read on a celiac test is VERY difficult. I DO believe it is worth it to try
"process of elimination" when it comes to food b/c it is just simply logical for anyone that suffers from a digestive disorder to seek out
a more "comfortable" way to enjoy food again!

I feel I have to defend my GI doc abit here as well. He is top of his game & I was the one who suggested being tested for the gluten allergy.
His diagnoses of my condition is right, proctitis & u/c so that is not in question. What remains unclear to me is the literature that is out there
mainly on the internet which does show links between these diseases and possible gluten allergy. I feel that I have to start somewhere b/c obviously
something triggered this nasty flare!
Posted 12/5/2009 12:50 AM (GMT 0)
but you're not on any rectal meds....considering UC starts at the rectum, you're flaring where no meds can reach. To me it's logical...plus you're not on anywhere a treatment dosage of Asacol.

Something to consider.

quincy
Posted 12/5/2009 1:30 AM (GMT 0)
Sorry for the confusion Quincy...

I just completed a round of prednisone 3 days ago along with rowasa enema's nightly for 3 weeks
Thats why doc did the scope today. I am starting the Cort enema tonight.
Also...in my signature line, you did miss my Asacol dosage, which is 400 mgs 3x daily.
Posted 12/5/2009 1:52 AM (GMT 0)
That's a pretty low dosage for asacol. I was on 1.2 grams 3x daily just for maintanence. If you're flaring you probably need the dose upped.

Burli-the symptoms can be similar, but if you've been scoped and show inflammation, it's not going to be celiac's or a gluten intolerance. Unless you have both IBD and that.

I personally have never had an issue with gluten. My biggest concern with carbs is fiber type-hard grains like brown rice and some bran kills me. On the other hand, oatmeal, pasta and bread are all fine.
Posted 12/5/2009 2:03 AM (GMT 0)
right. so gluten intolerance does not cause inflammation in the colon and thus would not confuse a GI into giving a misdiagnosis of UC if the colon was scoped.
Bottom line is cutting out glutens will not help a UC flare.
Posted 12/5/2009 2:06 AM (GMT 0)
you know whats ironic...I was diagnosed maybe when I was 19 or 20 with IBS. My family physician who
though I loved dearly...had no clue how to treat me & should've sent me to the GI back then but in his defense,
I really don't think docs knew enough about the condition.Well, atleast he didn't! I often had symptoms after that
but never anything like this nasty proctitis & u/c. I blame myself for not doing more about it sooner.
The blood was a no brainer for me though, once that started I couldn't get to the docs/g/i's office fast enough!
AHHH the joys of procrastinating...lucky me!
Posted 12/5/2009 2:34 AM (GMT 0)
Burli...
I know what I've been reading & perhaps I should correct myself to say
"gluten intolerance" not allergy... have been linked to colon and rectal inflammation
along with a host of other "auto-immune" diseases.
I am just going by what I am reading when I type in "colon inflammation from gluten intolerance"
or "rectal inflammation from gluten intolerance" or "celiac link to u/c" There is ALOT of reading
out there in webland!

I at no point stated that gluten caused my proctitis and u/c but there could be strong possibility
that this could be what feeds it thus leading me to ask the question....
The thing I hate most about these nasty diseases is the same question we all come back to... "who knows"!
Theory's, Shmeary's

Thanks again for all the feedback all :-)
Posted 12/5/2009 5:06 AM (GMT 0)
 

  There's is so much info out there.  I've been spending many evenings trying to figure it out.  From my (limited) perspective, the best doctors no longer consider celiac disease just a digestive system disease.  Here's an example: http://autoimmunedisease.suite101.com/article.cfm/atypical_celiac_disease_symptoms

Keep an open mind.  Gluten-free is not that bad.  I love my gf buttermilk bread better than any wheat bread.

Posted 12/5/2009 6:29 AM (GMT 0)
mom....you're on 1200 mg of asacol...not a treatment dosage regardless of you being on pred and especially now that you're not on it.

The steroid enemas will probably help you if there are any setbacks from being off pred.

Just to clarify a statement you use....you have UC. Proctitis is where it is if it's limited to the rectum. That would be called ulcerative proctitis. It's still UC.
Where is yours...throughout or limited. If limited, to where?

Hope you're on your way to feeling better.

q
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