In remission....now I am feeling invincible

ChattyMommy · Post by **ChattyMommy** » Thu Jun 13, 2013 10:44 am

and I know this is sort of a sticky wicket. I have found myself thinking "hmm, maybe I don't have a problem with gluten." I am a logical person, so I know the reason I am in remission is because I have been extremely vigilant in avoiding any form of gluten. But this is playing with my mind!

I have been able to add back in to my diet raw fruits and decaf and regular coffee, three of the things I have really been missing. I ate dinner at a restaurant (all foods prepared for me were gluten free) and I assumed that I would have a small reaction, just given my doubts about restaurants and cross-contamination. But I was fine. I am not complaining, as I know many of you suffer, and I don't mean to not acknowledge that.

But did any of you feel the same way when you reached remission and you were feeling so normal? Any and all stories that encourage me to not doubt this whole gluten sensitivity (not tested) and MC would be appreciated. I found myself wandering around the grocery store today thinking "hmm, maybe I can try small amounts of gluten now and be fine."

Thanks. Have a good day

Leah · Post by **Leah** » Thu Jun 13, 2013 10:53 am

I'm really happy for you that you are in remission!
I know exactly how you feel because I can't be IgA tested for food sensitivity, so I too am untested. You must remember what made you get better though. You may be able to eat some gluten at first with no reaction, but as the antibodies ( that you worked so hard to be rid of) build up in your system, you could totally relapse and it could take months to climb back out. Worth it? ... all I know is if gluten was the only food I had to avoid, I'd be so so happy.

Leah

ChattyMommy · Post by **ChattyMommy** » Thu Jun 13, 2013 11:03 am

Thank you! Thank you! Thank you! This is what I needed to hear. I know it sounds silly, but no one around me really gets this. I feel like my resolve would slowly fade over time if I am doubting it and family members are as well - not out of harm, just lack of understanding of MC and what caused it in the first place. And you are so right............eating some gluten here and there is definitely NOT worth it.

I know I am so lucky in many ways compared to many of you. I was diagnosed very early since I have a family history of colon polyps. I searched and searched the internet between doctor appointments to try to figure out what was wrong with me (and I mean extensively!) and never came across MC. So I have to wonder where I would be without that quickly scheduled colonoscopy. I know my early diagnosis is the reason I am doing so well.

I wish you health, remission, and resolve! I truly wish you had it easy as well. I cannot imagine................Thank you for your encouragement.

Post by **tex** » Thu Jun 13, 2013 1:40 pm

with Leah. She described the situation quite well. Gluten is a very insidious enemy, and the gluteomorphins in it do a good job of triggering the opiate receptors in the brain, to make us crave gluten. Eventually those cravings will fade away, but they are basically almost as persistent as many drug addiction responses, so it can take a long time for them to fade, and the craving may never disappear completely for some people.

Especially for those of us who seem to have a relatively easy and dramatic recovery (as you have described), it's actually somewhat common to feel "invincible", and to wonder if what we have just gone through was all just a bad dream. Sometimes the doubts can last for a long time, until an accidental exposure to gluten (or an intentional gluten challenge) brings us back to reality. For some of us who happen to have relatively mild reaction symptoms, it can be difficult to permanently erase those doubts from our mind. For most of us though, the results of a re-exposure to gluten are usually so sobering that by the time we recover again, we no longer harbor any doubts in our mind.

Tex

TXBrenda · Post by **TXBrenda** » Thu Jun 13, 2013 7:07 pm

Congrats on your success and enjoy your remission. I am one that is fortunate that gluten is apparently my only intolerance. I have followed a GF diet for about ten years. I have ingested gluten in these 10 years, sometimes intentionally and sometimes not. I usually pay for it one way or another! Sometimes the D comes back and sometimes I just feel awful (fatigue, joint pain, etc). I find it is best for me to avoid intentionally eating gluten.

ladyathome · Post by **ladyathome** » Fri Jun 14, 2013 1:55 pm

I fully understand what you're saying...I was one of those who HAD to do the Enterolab test and actually see it written in black and white for me to get it into my hard-head that I couldn't have gluten.

Also it helped dramatically when I realized it's not just the short term issues that I have to worry about, but also the further damage that's being done to my body every-time I accidentally or otherwise eat gluten.
Glad to hear you're feeling good! I do too!

patc73 · Post by **patc73** » Sat Jun 15, 2013 10:57 am

I got Enterolab tested two years ago after diagnosis with CC, and everything came back normal (except the gene testing...double DQ1). Then I had a blood test for IgA deficiency, and I was normal! So, I have even more reason to doubt my gluten sensitivity. Unfortunately, it is very real. I tempted fate in March and ate at several restaurants in one day for an event at work, and paid the price by being sick for a month. Then, last month, I was sick again after eating rotisserie chicken. I mentioned this to my rheumatologist at my last appointment, because each flare includes joint pain along with the D (of course), and he said, "Even though you test negative for celiac, you're definitely gluten-sensitive!" No, duh! The thing that irks me about being celiac-negative is that doctors don't take us seriously, and insist that this disease (CC) goes into remission, as if that's the end of it! We're just as harmed by gluten as celiacs are, whether they admit it or not.

DebE13 · Post by **DebE13** » Sat Jun 15, 2013 4:53 pm

That's great news! Don't chance it. I've never reached remission but have had a run of good days where I thought the same thing and ate foods I knew I shouldn't only to regret it later. Enjoy!

MBombardier · Post by **MBombardier** » Sun Jun 16, 2013 9:25 am

I am like Pat--the enterolab tests showed nothing, and my IgA tested normal. The only thing that showed what was going on was the fat malabsorption test--my results were at the top of the chart. But one unintentional ingestion of gluten was sufficient to show me that no matter the test results, I can't eat it. There are times when I feel so well that I cruise through life feeling enormous freedom. But it's freedom within the fence. It's kind of like knowing that gravity works. It works to keep you safe, but if you walk off a cliff...

As far as friends and family members are concerned, I tell them I prefer to focus on what I can eat instead of what I can't. It helps that when I feed them gluten-free stuff, it tastes good and the texture is good. I have a friend who says that when friends/relatives come to stay at her house, they can leave after days without ever knowing they ate gluten-free the entire time they were there. We all have challenges we have to live with. I suspect that it's the addictive quality of gluten that makes people react so strongly when they know that we can't eat it.