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Little update on my experience with gluten

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Ulcerative Colitis
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Posted 5/10/2013 6:02 PM (GMT 0)
I've said before that I suspected that my remission since going gluten free was likely coincidence and that my strong belief in the correspondence was likely magical thinking.

Well, evidently not.

I mean, it still could be coincidence, but I gave in an had a piece of cheese pizza on Wednesday afternoon. Wednesday evening, I had some blood in my stool, but I was pretty sure my body was just giving me a stern warning.

Yesterday and today, well, it looks like I may be going into a mild (I HOPE) flare. I should have used a steroid enema last night but I didn't. Denial, as usual, no doubt.

It still could be coincidence but I doubt that I'm going to do any more experimenting.
Posted 5/10/2013 6:12 PM (GMT 0)
All you can do is reintroduce gluten as a test and look for negative signs. Sure settle down for a while, get things good and stable before you test again. We all deserve a break...
Posted 5/10/2013 6:20 PM (GMT 0)
janey, are you on any meds at all?....exactly what and how.

q
Posted 5/10/2013 6:25 PM (GMT 0)
oop sorry, I always forget to attach my sig in a first post
Posted 5/10/2013 6:28 PM (GMT 0)
People probably get tired of me saying this, which I only do on certain occasions, but many UC'rs are low on the digestive enzyme DAO, which helps eliminate excess histamine in the body. Pizza is high in histamines. It used to rough me up condsiderabley every time I ate foods high in histamine. Ever since taking DAO before meals I can eat pizza and other high histamine foods with no problem. There are a lot of similarities between gluten inolerance and histamine intolerance but they are two different separate things. Some of us may have gluten intolerance while others may have a histamine intolerance. Sometimes gluten just gets the blame when it is really innocent.
Posted 5/10/2013 6:33 PM (GMT 0)
so how long off the rectals? (as needed isn't a clarification)

What other symptoms have you been having that you might have denied as well?

q
Posted 5/11/2013 1:12 AM (GMT 0)
I haven't used rectal meds since probably July of last year. With the blood, I also had some gas and a little mucus, which is why I say possibly a "mild" flare. I'm still on the full oral dose of Lialda, though, haven't skipped or backed off on that at all.

garylouisville, I'm totally willing to give DAO a try, and I'll pick some up this weekend.
Posted 5/11/2013 1:24 AM (GMT 0)
You know what produces more histamine then any non allergenic food? Lactobacillus casei and L. Bulgaris, both found in vsl#3.
Posted 5/11/2013 2:39 AM (GMT 0)
"You know what produces more histamine then any non allergenic food? Lactobacillus casei and L. Bulgaris, both found in vsl#3."

seriously pk ? how did you find that little bit of incriminating evidence ?

Posted 5/11/2013 3:00 AM (GMT 0)
The enemas would solve the blood/gas problem really fast.
Posted 5/11/2013 3:03 AM (GMT 0)
Histamines are another hobby topic of mine because they are effected by the methyl cycle and I think polymorphisms in genetics + stressors allow pathogens to run amok doing all sorts of things.

There are studies, but hate searching on my iPad..

thelowhistaminechef.com/these-probiotic-strains-lower-histamine-rather-than-raising-it/
Posted 5/11/2013 3:50 AM (GMT 0)
interesting !

thanks pk -
Posted 5/11/2013 4:03 AM (GMT 0)
I still take VSL#3 and modify my foods.. but I couldnt tolerate vsl3 in the beginning and Ill stop it once I get the e.coli and strep in my gut tamed. Ive already started tapering probiotics just to Bidifo and acidopholis
Posted 5/11/2013 4:09 AM (GMT 0)
dagnabit, that gave me a search term I hadnt processed before.. ecoli and histamine.. and it seems like I want to transition over to safe, non histamine producing bacteria entirely. the a-tnf results had kept me hanging on..

www.jimmunol.org/content/169/4/1978.full
Posted 5/11/2013 12:50 PM (GMT 0)
Interesting. I may have to check into this further.
Posted 5/11/2013 3:15 PM (GMT 0)
I've taken 50mg generic Benadryl antihistamine at bedtime for several years because it helps me sleep. Good to know that it may be helping my UC too. I've been gluten-free for years and every time I test it I get symptoms.

I'm positive one of my intolerances is gluten (there are several others) because I've looked at histamine-rich food list and half are well tolerated and the other half are not. No smoking gun.

Perhaps I should switch VSL#3 to the probiotics PK is planning to and see what happens.
Posted 5/13/2013 6:18 PM (GMT 0)
I was going to ask -- do you have to take DAO digestive enzymes, or can you just take benedryl? Oh wait, you're being facetious. :-( Well, for myself, I'll happily try everything. I think that for the most part I tolerate the histamine rich foods but I can't rule anything out at this point.
Posted 5/13/2013 7:07 PM (GMT 0)
but you're back on the enemas again..right?
q
Posted 5/13/2013 7:15 PM (GMT 0)
*sigh* well. Right in theory but I admit that I have a grave reluctance to use them on nights when my boyfriend stays over, so right, but only as of tonight :-( I was giving consideration to using the suppositories in the morning and the enemas at night. We'll see how tonight goes and I'll make the suppository decision in the morning.
Posted 5/13/2013 7:19 PM (GMT 0)
you've been through this before with using them, with improvement and obviously you've done well for a long while.

I cannot remember if you were on the steroid or mesalamine or both. Yes, using the supps during the day is a good way to maintain med continuation.

q
Posted 5/13/2013 10:09 PM (GMT 0)
Yeah, I'll be fine down the road, but you can bet I won't be eating gluten again. :-)
Posted 5/14/2013 9:22 AM (GMT 0)
Hey Janey: i COMPLETELY understand your issue with gluten. Im the same; whenever i eat gluten; BAM blood the next day. And no im not on any rectals whatsoever because all mesalamine rectals (tried them over a 6 month period last year so i know what im talking about) make me bleed MORE!!! yeh i know it's crazy since i can take oral mesalamine fine. My guess is the sulphite preservative in them. There is no sulphite free version here in australia. I have tried them over and over again with the same issue, and same with gluten; they both make me bleed. Without them, I'm great.

However if you can tolerate rectal mesalamine then by all means try it, then try gluten. For me even when i have zero symptoms, gluten still has the same effect. It makes me bleed the next day. Period.
Posted 5/14/2013 9:23 AM (GMT 0)
oh and Gary: is there a vegetarian version of the DAO enzyme?
Posted 5/14/2013 12:25 PM (GMT 0)
All I've seen appears to be made like this:
Diamine Oxidase (from porcine kidney protein concentrate)
Posted 5/14/2013 4:43 PM (GMT 0)
ConquerUC -- I can't tolerate rectal mesalamine, either. I did start using the corticosteroid enemas last night and the bleeding is gone for now. I have other symptoms, though, such as urgency and increased frequency, and I have a little story that I'm telling myself about why they appeared, and I'll hold onto that little story unless and until I have to go on oral prednisone :-(
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