Not Just Uc...not Just celiac disease...not Just What Else?

[Need new guts]

This is my first time posting, so pardon any inadvertent fo pahs....how the hell do you spell fo pah?? ALso pardon the length, it got out of hand quickly.

Anywho, in short I was diagnosed with Ulcerative Colitis a little over a year ago and have been messing around with different meds, foods, etc. Nothing has really seemed to knock it out completely. I recently came across an article in USA Today about celiac disease. W/o getting into all the details, nearly all of them matched my symptoms that I'm supposed to be having as a result of the UC from time to time. So after some quick and dirty research, I went gluten free (to the best of my knowledge) and things quickly turned improved (until I gave in at a keg party...i know, i know).

Now i'm back working on the non-gluten effort, and seeing good results in a pretty short turn around. I've just spent the last 2 hours on-line reading about gluten-free menus, restaurants, symptoms, other afflictions with similar symptoms, blah, blah, blah.

I realize that there's a ton of info out there, but quite frankly it's freaking overwhelming. Based on my quick improvement after going gluten-free, i think it's safe to assume that I've cut out something in my diet that I shouldn't have been eating...perhaps it's just celiac disease....but then I also read about all these other stories of other diseases/intolerance like proctitis, tenesmus, soy allergy and a lot of it also seems like it could ring true. I'm trying to rule things out here, not rack up more crap to worry about and deal with.

Bottom line...what do I do next? If the non-G works for me, I've read I can't get tested for it if I haven't been eating it, so do I have to go back on it? how do I pose this to my Dr.? what about all these other things out there that could also be causing problems? could it be possible I don't even have UC and can stop dropping massive amounts of cash on my meds? are meds part of the problem? ...and it goes on and on.

I'm sure that this must have come up on this forum before, and I have found some useful info already, but I just don't have enough time to go through all 86 pages of posts. So I'm looking for some sage advice, or directions to sage advice that has already been provided.

Thanks in advance for any help. I gotta go hit the little boys room, and sit there....and have nothing happen...then give up and stand up...then have to sit right back down....you know what I'm talking about.

[Michi8]

  Need new guts said:

This is my first time posting, so pardon any inadvertent fo pahs....how the hell do you spell fo pah??

It's spelled faux pas.

I would definitely do further investigation about celiac disease, if the diet is working well, keep it up. If diagnosis is important to you, then talk to your doctor about it. In the meantime, I highly recommend reading Celiac Disease: A Hidden Epidemic by Peter H.R. Green, Rory Jones. It goes into detail about the disease, diagnosis, treatment and relationship to other autoimmune disorders and health issues.

Michelle

edit: aargh! I can't make my hyperlinks work anymore...my code is being changed for some reason. I was trying to link to the amazon .com page about the book...maybe Amazon doesn't allow linking?

[Lisa]

  Need new guts said:

This is my first time posting, so pardon any inadvertent fo pahs....how the hell do you spell fo pah?? ALso pardon the length, it got out of hand quickly.

Anywho, in short I was diagnosed with Ulcerative Colitis a little over a year ago and have been messing around with different meds, foods, etc. Nothing has really seemed to knock it out completely. I recently came across an article in USA Today about celiac disease. W/o getting into all the details, nearly all of them matched my symptoms that I'm supposed to be having as a result of the UC from time to time. So after some quick and dirty research, I went gluten free (to the best of my knowledge) and things quickly turned improved (until I gave in at a keg party...i know, i know).

Now i'm back working on the non-gluten effort, and seeing good results in a pretty short turn around. I've just spent the last 2 hours on-line reading about gluten-free menus, restaurants, symptoms, other afflictions with similar symptoms, blah, blah, blah.

I realize that there's a ton of info out there, but quite frankly it's freaking overwhelming. Based on my quick improvement after going gluten-free, i think it's safe to assume that I've cut out something in my diet that I shouldn't have been eating...perhaps it's just celiac disease....but then I also read about all these other stories of other diseases/intolerance like proctitis, tenesmus, soy allergy and a lot of it also seems like it could ring true. I'm trying to rule things out here, not rack up more crap to worry about and deal with.

Bottom line...what do I do next? If the non-G works for me, I've read I can't get tested for it if I haven't been eating it, so do I have to go back on it? how do I pose this to my Dr.? what about all these other things out there that could also be causing problems? could it be possible I don't even have UC and can stop dropping massive amounts of cash on my meds? are meds part of the problem? ...and it goes on and on.

I'm sure that this must have come up on this forum before, and I have found some useful info already, but I just don't have enough time to go through all 86 pages of posts. So I'm looking for some sage advice, or directions to sage advice that has already been provided.

Thanks in advance for any help. I gotta go hit the little boys room, and sit there....and have nothing happen...then give up and stand up...then have to sit right back down....you know what I'm talki

Sorry for the dup in the post. I only saw the last two paragraphs.

[Need new guts]

  Michi8 said:

In the meantime, I highly recommend reading Celiac Disease: A Hidden Epidemic by Peter H.R. Green, Rory Jones.

edit: aargh! I can't make my hyperlinks work anymore...my code is being changed for some reason. I was trying to link to the amazon .com page about the book...maybe Amazon doesn't allow linking?

Thanks! I don't know about the hyperlink problem, but I found it on Amazon, looks excellent. I'm going to order it today. That's the exactly the kind of thing I'm looking for.

It looks like there's some info in there regarding testing, but until I can get the book...if I go gluten free and see my symptoms dissipate, then get the blood tests, will they come back as negative? i'd hate to have to go back on the G just for a test. rather just get the biopsy.

...maybe this means I don't even have UC...that would be freakin sweet.

Thanks again.

Josh

[Michi8]

  Need new guts said:

Thanks! I don't know about the hyperlink problem, but I found it on Amazon, looks excellent. I'm going to order it today. That's the exactly the kind of thing I'm looking for.

It looks like there's some info in there regarding testing, but until I can get the book...if I go gluten free and see my symptoms dissipate, then get the blood tests, will they come back as negative? i'd hate to have to go back on the G just for a test. rather just get the biopsy.

...maybe this means I don't even have UC...that would be freakin sweet.

Thanks again.

Josh

It is entirely possible that it's not UC, but it is also possible you have both celiac and UC, or just UC.

If you are gluten free for some time before testing it will affect the results. That said, a lot of people here choose to test with Enterolab (Open Original Shared Link)...those tests are unaffected by a gluten free diet...worth checking out!

Michelle

[dionnek]

I second the Enterolab (or Kimball Labs) for genetic testing at least if you suspect celiac (not sure if you can do the stool test for celiac through Enterolab when you aren't consuming gluten or not, but I know going the dr. route when you haven't been consuming gluten won't do any good). I would think if you have either gene for celiac, and you are feeling better on the gluten-free diet, then you can at least determine that you "probably" have celiac - not sure about the UC but you could try going off the meds? (I'm not a dr. though and don't know anything about UC so maybe someone else with this will chime in). Good luck!

[CarlaB]

How were you diagnosed with UC?

Enterolab can test when you're gluten-free, but not for celiac, only gluten intolerance.

[Need new guts]

  CarlaB said:

How were you diagnosed with UC?

Enterolab can test when you're gluten-free, but not for celiac, only gluten intolerance.

Got really sick last October, bloating, pain, constipation, blood, etc.., family doctor thought it was a virus...not so much. Went to a GI, started UC meds, had a colonoscopy shortly thereafter w/ biopsies throughout lower C. He said I probably had UC, but can never be sure if you truly have UC or Crohn's, or Crohn's Colitis. He did find one granuloma, which is what you usually find in your upper GI if you have Crohn's, but they're supposed to be clustered. Then had an upper GI small bowel follow through in Jan, confirmed no Crohn's.

Then I got real sick this April...went in the hospital, lost 23 lbs. in 12 days and was super anemic, had CT scan, indicated that my Lower I. was wicked inflamed. Had to go on steroids for a while, also had a new doctor since I moved.

General consensus has always been UC. I've always kinda supsected Crohn's b/c sometimes my upper guts feel more messed up then my lower and it's obivious my entire GI is not functioning properly. But then I found out about celiac disease and now I think I'm on to something.

Josh

[Nancym]

Faux pas Means "false step" in french.

Dr. Fine found a pretty good link between UC and gluten sensitivity. You might want to check out Enterolab.com.

[CarlaB]

Since it seems that you were pretty firmly diagnosed with UC, I would guess that you might have UC and gluten intolerance, which may or may not be celiac disease.

I have another health problem and the gluten intolerance seems to be caused by it. I am not celiac, but I cannot eat gluten. You could be the same way. When I was tested for celiac, there were other diseases that often go along with celiac that my doctor did a colonoscopy to check for. So, I don't think it would be unusual for you to have gluten intolerance or celiac along with UC.

[lonewolf]

  CarlaB said:

I have another health problem and the gluten intolerance seems to be caused by it. I am not celiac, but I cannot eat gluten.

Carla - Do you think that if you got your other health problem cleared up and allowed your digestive system to heal that you would be able to introduce gluten again? I'm just wondering.

[CarlaB]

  lonewolf said:

Carla - Do you think that if you got your other health problem cleared up and allowed your digestive system to heal that you would be able to introduce gluten again? I'm just wondering.

I hope so! I believe the current thinking of the medical profession is no, it won't go away once it's triggered. You can see my Enterolab scores below, they did show I have an immune reaction to gluten.

I would name my other health problem, but I'm still in the process of being diagnosed.

[lonewolf]

  CarlaB said:

I hope so! I believe the current thinking of the medical profession is no, it won't go away once it's triggered. You can see my Enterolab scores below, they did show I have an immune reaction to gluten.

I would name my other health problem, but I'm still in the process of being diagnosed.

Sorry to hijack this thread for a few posts!

I guess I'm wondering just because I've had other problems too and I've always wondered which caused which - the gluten (and other food sensitivities) causing my other problems or something else causing all of them. I'm not Celiac either, technically. It would be nice to be able to tolerate things like barley malt in corn flakes. Although, if I could choose foods to get back it would be dairy and eggs.

I'll be curious to know what you find out about this other health problem.

[CarlaB]

  lonewolf said:

I'll be curious to know what you find out about this other health problem.

I'll keep you posted. It sure seems that for those of us who are not celiacs but have many food intolerances that there is something causing these sensitivities.

[Need new guts]

  CarlaB said:

Since it seems that you were pretty firmly diagnosed with UC, I would guess that you might have UC and gluten intolerance, which may or may not be celiac disease.

I have another health problem and the gluten intolerance seems to be caused by it. I am not celiac, but I cannot eat gluten. You could be the same way.

Good point. When I meet with my doc in a few weeks I'm gonna have to make sure that I we discuss both the intolerance and celiac as possibilities. Since I'm new to this, I use the terms interchangeably, but they're obviously two different afflictions.

I think my Dr.'s pretty good, he's been considerate and open minded so far, hope he doesn't think I'm way off base. But by the time I see him again I will have been gluten-free (hopefully) for more than a month, and if I'm feeling that much better, it'll be kinda hard to deny that I've stumbled onto something.

Can you have a wheat intolerance? or just an allergy?

Josh

[CarlaB]

Some people have wheat allergies, some have gluten intolerance/celiac disease, and some have both.

Most people around here use gluten intolerance and celiac disease interchangeably, but your doctor may be more likely to admit you have a gluten intolerance than to diagnose you with celiac disease by dietary response. Typically they want to do a biopsy for a celiac diagnosis, but there are exceptions. They really are pretty much the same thing as people with gluten intolerance can be just as sensitive and just as sick as people with celiac.