Maybe you have a GLUTEN issue, not UC??

Have any of you looked into the whole "gluten" thing? This article is an interesting (and scary) read:
www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html

Most of the time a glueten allergy indicates Celiacs disease which has similar symptoms to IBD, any good GI tests their patients for Celiacs when they are testing for IBD, just as I was and all 4 of my GI's tested me for Celiacs even though they knew I had crohn's.

:)

I pretty much agree with Judy (well, i don't say that I'm old, since I'm 31!), but I don't think there's any way what I have is celiac disease. I mean, my scope showed tiny ulcers all over the place, and last I knew, that just doesn't happen with celiac disease.

Gluten intolerance wouldn't give the pattern of UC. It would be a separate issue, not to say that it wouldn't exacerbate some symptoms.

q

I'm not sure about food intolerances appearing as UC. I've posted in another thread about eosinophils appearing in my daughter's colon during her scope (it was a completely ulcerated colon). My daughter's GIs discarded it completely. A second opinion from the someone considered the top ped GI in Italy (where my in laws live) says it indicates food intolerance and that we need to start removing food to find the culprit. He believes this will make a significant difference. I'm not sure, but I'm going to try it. Look up eosinophilic colits for more information. I'm not saying it's what you have, but it's worth a look.

Suebear - ! Thank you for your articulate post!! I laughed out loud in delight at how well you described me and my relationship to this disease! Thank you - I really needed this wonderfully clear insight this morning.
Yes, denial. And.... the fact is, many diseases are not controllable. Our minds seek order and control; "if I do this and that, I should be fine...." and so we keep looking for the right way to eat, the right supplements, the right meds, or maybe a misdiagnosis....etc. It's as if having an illness were a sign of moral weakness - so if we can figure it out and "do right" we'll be healthy again.
Thanks for re-righting my perspective!

Sue,
Agreed, but, like you, I need to go through the process that your signature implies you did. If we get to surgery, I hope it will be a cure for us like it was for you. But, before I get there, I need to know that I've explored all options and gotten second, third opinions if necessary (though maybe not things like Remicade, I'm not sure of that one yet for a small child). Regardless, you're at the other end of this process but I think it's normal and necessary to go through it. As for not trusting my child's GI, you're right, I don't. That's not to say I wouldn't be able to trust another doctor and that's why I'm looking for second opinions. Not everyone's lucky enough to have a good GI and it would be a load off of my shoulders if I felt that my child's GI was at the top of their game and saw her as more than another case. I'd be able to accept the idea of her taking potentially dangerous meds a little more easily if I felt this.

I'm a total realist, I have absolutely no belief that my diet affects my UC. I've gone low fat, low residue, gluten free, liquid diet. etc. Nothing changed. Somedays I eat pepperoni pizza & am fine, some days I drink one Ensure & have diarrhea. Whatever... Any scope I've had shows complete inflammation, ulceration, & pseudopolyps from scarring. I was also tested for celiacs at my very first GI visit, way back when. I have total faith in my GI, & haven't disagreed with anything he's suggested. And believe me, I have done my research on UC/IBD & any/all "cures", including surgical. I'm lucky, I guess. Or stupid!

o.k Suebear...

I have ULCERATIVE COLITIS, it's something I will always have with symptoms or without so, no, I am not in denial
by any means. I was unaware that the medical community has pinpointed the causes & triggers of the disease, last
I knew the only defined medical info they can offer us is the genetic factors/links.

I have great respect for your input on this forum Sue and am happy you no longer suffer. I however will probably
never stop trying to "understand & manage" my condition. If it means exploring food choices (which others seem to
share these thoughts ) why not? wait, I hear the violin...after all we all share the disease but all manage it how our body
commands.

Really, people, I don't think any of us need to defend our choices. I'm sure Sue wasn't judging anyone - she just isn't that sort of person. Whatever you want to do with your own body is fine, as long as it doesn't harm anyone else. If something works for you, great, just remember it may not work forever and it may not work for other people.

We all go through denial with this disease. It's a normal part of the grieving process. It helps us to cope until our psyches are ready to deal with reality, so it's a functional behavior. After all this time, I still go into denial about any flare symptoms I see. When I'm ready psychologically to accept the symptoms, I stop denying and take care of them.

That was good reading & I so agree LFtC

I have UC. I do not have celiacs disease ( I was tested for it ). But I do know without a doubt when I was at my worst for flaring I started eating gluten free, and my symptoms lessoned by at least half. Why? I am not sure. It could be because I gluten intolerant ( as my GI suggested) It could be because My gut was so imflamed that I just couldn't handle it. Who knows? All I know is at that point going gluten free was the best idea that was helping. None of the meds were, not even high doses of pred.
I also know with out a doubt for me the spinach and sunflower seed diet is a big factor. If I have a bad day, the next couple days I eat a can of spinach and I go back to normal. This is fact.... FOR ME.
Yes I want to manage this disease. If its through diet or medication I don't care as long as I can live my life and enjoy it. What ever that takes.
Do I think that some day they will figure out a true cure.... Yes I do and I hope they get at it fast for all of us. LOL. Till then I think we all have to manage this however we can.
So back to the original question.... Yes I have noticed Gluten affects me when in a flare. I am not sure how it affects me now in remission because I limit my intake of it. I still eat it... I'm just aware of my intake and make choices away from it occassionaly. Doesn't mean I won't eat it if I'm hungry for that particular food.... just means I may try and avoid gluten at the next meal or two to make up for the gluten I "just had to have"

I think some foods like gluten maybe just irritates the colon for many people even if it isn't a server reaction it may make an already irritated colon even worse.

also

We should respect each others decisions on what they think works for them since everyone's body is different to an extent. If someone can cure themselves without relying completely on drugs, I want to hear about it and please share it, even if it may not work for everyone at least put the word out you believe you had success with it. With this condition it is hard to tell what works and what doesn't sometimes.

Way I look at it why poison yourself with drugs and pay big pharma big money if you don't have too?