Is this as good as it gets? The Gluten Dude

Zizzle · Post by **Zizzle** » Fri Jul 13, 2012 1:09 pm

I read a blog by a funny guy with Celiac Disease because it makes me feel better and often laugh, about my current state of affairs. His recent post made me think about the role of acceptance in what ails us. Do we continue to be a human pin cushion, cut out another set of foods in search of the perfect norman, or accept that norman may elude us forever, but we have our life back, and that's what matters?

I'm not sure I have an opinion either way. My goal is to live as long as I can for my kids...which keeps me searching for answers. But maybe enjoying life more fully is more important?

Anyway, food for thought...

http://glutendude.com/celiac/celiac-dis ... en+Dude%29

Sheila · Post by **Sheila** » Fri Jul 13, 2012 2:55 pm

Thank you for posting that letter. I needed to hear something like that today of all days.

I just got the results of my MRT testing this morning, spent the day reading the thing and cleaning out my freezer, refrigerator and pantry of all of the things I can no longer eat. My neighbor has taken all of the food and is doling it out to the neighborhood. The results are hateful. However, I really don't feel all that bad and I'm eating quite a bit of the things that are either red or very yellow. So, I printed out that letter and will refer to it when I start getting crabby about this
&^#*! DIET.

I've been stamping around the house, throwing cans and packages around, swearing and being generally crabby. The poor dog thinks she did something wrong and is hiding. So, I can still have a glass of wine and even a GF beer and I think I will definitely be enjoying one of those with my dinner.

Sheila W

brandy · Post by **brandy** » Fri Jul 13, 2012 3:19 pm

Hi Zizzle,

Good thread and good link! Mom (celiac 25 years) is flying today with Dad to Nice where they are getting on a boat at Monaco for a two week river cruise. Sounds pretty fun to me while I'm slogging away at work. I think at diagnosis she accepted things, made diet changes and moved on with her life. Yup, she has the low back pain which I think is tied out to celiac and yup she has the dining out issues but she is full of energy and I think into the "enjoying life mode."

Brandy

Leah · Post by **Leah** » Fri Jul 13, 2012 4:20 pm

I have similar thoughts Zizzle. I have added things back in slowly.( Am taking one entocort every other day). Sometimes I have "softserve" or maybe even a little looser, but it's still only once a day in the morning. It's no longer getting in the way of me living my life AND I get to eat. Sometimes I just think that seeking out the perfect norman every day is over rated.

Leah

MBombardier · Post by **MBombardier** » Fri Jul 13, 2012 8:01 pm

This made me think of Gabes, and how she's always saying that our journey is our own journey, and no one else can do it or tell us the right way to do it. It also made me think of Gloria. She has very carefully evaluated all her food and medication options, and has finally come to the conclusion that in order to eat at all, she will have to be reacting to one extent or another to something.

I think sometimes we begin to compare ourselves with others and think about how that person would handle something, and sometimes we end up doing things that aren't really right for us. An example for me is MRT. I have thought about doing it, but I don't really want to, and I have realized that to a certain extent I am considering it because so many other people have done it.

I think in the end, we each have to come to a place where we have peace with what we are doing about our health issues and our quality of life, whatever that may look like to us.

wonderwoman · Post by **wonderwoman** » Fri Jul 13, 2012 8:27 pm

Sheila, you made me laugh, I felt the same way when I got my tests back.

So, I can still have a glass of wine and even a GF beer and I think I will definitely be enjoying one of those with my dinner.

Which did you have, the beer or the wine?

Sheila · Post by **Sheila** » Sat Jul 14, 2012 6:37 am

Wine.

I have GF beer that my stepson gave to me but still haven't tried it. Wine isn't without consequences for me since I have rosacea as well. This morning without tea or coffee was really strange and I just cannot wake up and get moving.

Today I have to start all over again filling my freezer. All of the chicken/leek soup is gone to a neighbor as is the butternut squash soup made with chicken stock. That broke my heart. The Morning Glory muffins are still in the freezer even though I know I can't eat them. Today I'll make them with either pumpkin, zucchini or banana and with hazelnuts or almonds.

Marliss says she didn't want to have the MRT test and complicate her life even further and I think I agree with her. I almost wish I hadn't done the test. My symptoms aren't "that" bad especially since I'm taking entocort and have started a modified Paleo diet. Oh well, now I know and can't claim ignorance when I get sick eating a brownie made with cocoa, walnuts, amaranth and tapioca. Eating paleo makes it a lot easier to cope with all of these new restrictions.

Sheila W

draperygoddess · Post by **draperygoddess** » Sat Jul 14, 2012 11:59 am

Sheila,

I was feeling the same way earlier this week! Giving up a particular food is one thing, but whole food groups is kinda depressing.

Still, I think I'm coming around to accepting what I know about what I can eat and what I can't. There are a few things that I'm just not going to part with because I feel like there needs to be SOMETHING I look forward to. I still have my coffee with creamer (I've found that as long as I'm taking my Zyrtec and not reacting to anything, I can still drink it), and I have a stash of GF chocolate chips. I will mix a handful of them with some sunbutter as a dessert. They don't belong in paleo or low-histamine diets, but they make me happy. Although my diet is certainly not as limited as Gloria's, I have also come to the conclusion that if I cut out absolutely everything I have a reaction to, I won't have much left, so I take my Zyrtec and try to eat in moderation.

And if this really is "as good as it gets," it's not that bad. A whole lot better than being scared to leave the house!

Sheila · Post by **Sheila** » Sat Jul 14, 2012 12:24 pm

Thanks, Cynthia. I take Zyrtec at night to help with both allergies and sleep. I think I may what you do and not drop every single yellow item on the list. I lost vast amounts of food that I enjoy and it is depressing. I think I will have either tea or coffee in the morning and not worry about it. I made an enormous batch of chocolate chip cookies from a recipe in Elizabeth Hasselbeck's book and they are excellent. I eat one cookie a day after lunch. My guilty pleasure. There are ingredients in her recipe that I can't eat and will find another recipe that works and continue my once-a-day sweet treat. The muffins are great in mid-afternoon and help keep my weight from falling any further.

You know, just hearing someone else voice their thoughts and share how they deal with this crappy diet really helps. Life is short and uncertain and I don't want to live the rest of my days not able to enjoy food that I love. I do know that brownies will be a once a year treat but I can have a single chocolate chip cookie every day and that's perfect.

Sheila W

amberlink09 · Post by **amberlink09** » Sat Jul 14, 2012 4:22 pm

I completely agree! I try my hardest to stay away from foods I know I can't tolerate, but sometimes being able to eat something that makes me happy at the end of a bad day, being able to go out on a date with my boyfriend, or getting to grab a drink with some friends just has to come before worrying about my stomach. I never realized how much eating is a social thing until everything was taken away from me. I think that the worst part for me is cutting out so much food and finding no relief, which just makes me wonder if I would be better off to quit all my worrying and just eat what I want!

Leah · Post by **Leah** » Sat Jul 14, 2012 4:36 pm

Amber, Have you tried Budesonide yet? I am not a pill pusher, but it did do wonders for me ( and others) and helped tremendously with the inflammation right away. Then the diet had a better chance of helping more quickly. Just a thought.

Leah

Gloria · Post by **Gloria** » Sat Jul 14, 2012 6:41 pm

My admonition is to never underestimate the power of Entocort (or Imuran). You can get away with eating a lot more questionable foods while on even a very low dosage, but once you get off of it, a relapse can be just around the corner. Once in a flare, it can be very difficult to determine which food(s) is bothering you.

I guess what I'm saying is that I don't believe it's a good idea to experiment with foods unless a) you've been off the immune suppressant for 8 weeks or b) you intend to stay on the suppressant. Immune suppressants are very powerful, even at low dosages. There is a huge difference between being on a small dose every few days, and being off of it completely, much greater than the difference between 3 pills vs. 2, and 2 vs. 1, as Tex wrote.

That's my experience and opinion, FWIW.

Gloria

DebE13 · Post by **DebE13** » Sun Jul 15, 2012 12:30 pm

Amber- I've thought the same thing quite often. I've already confronted the cupboard on many occassions with the intent of eating what makes me happy and I haven't been able to follow through with it. Even though I still feel crappy more often than good, I know I can (and will) feel worse if I just eat what I want.

Thanks Zizzle- great article!