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I Hate Celiac. Need Positive Thoughts Sent My Way Please!

Kimbalou

By Kimbalou
in Coping with Celiac Disease

Recommended Posts

Kimbalou Enthusiast
Kimbalou
Posted

Hi. I am so tired of my stomach feeling like a big huge gas bubble that can't escape. I think I'm eating like I'm supposed to until...BAM!!! I'm sick again!! I hate my stomach! I just read the "forbidden foods list" and saw caramel flavoring might not be ok? I thought it was ok. I had a sundae with some on it last week and I think that made me sick.

Now that I know what it feels like to have a stomach that feels "normal", it feels twice as bad when I feel sick...does that make any sense?

I am also so tired of hearing things at work like this "I brought bagels today. I brought donuts today. blah blah. " One of our nurses actually told a new doctor he had to bring in pastries on his weekend or the nurses would get mad...she was kind of joking but not really. I felt like saying "Don't bring them in, some of us can't eat them anyway, it's ok."

I know I should just tell myself I am healthier not eating pastries even if I didn't have Celiac!! And all those people eating all of that sweet stuff will just get fatter anyway!! HA!

Ok, can you tell I just needed to vent??

thanks for listening

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koolkat222 Newbie
koolkat222
Posted

I totally sympathize with you! I'm so careful about what I eat, yet it seems my stomach is never normal! I rarely eat out because I am very sensitive to cross contamination.

My family threw a surprise birthday party for my dad last month. I wasn't planning on eating. But,the owner of the restaurant assured me that a special appetizer and a salad meal with gluten-free ingredients had been made for me. Then I told him about the cross- contamination issue, and he said that precautions would be taken. The meal was very good, and I thought I was ok.

I don't react within minutes like some celiacs do; my reactions take about an hour or so to kick in. :o It was the worst glutening and longest lasting (weeks) symptoms I've ever had!

So I understand the frustration you feel!

cap6 Enthusiast
cap6
Posted

If you are new to this you may want to leave the sweets & treats and other hard to digest things till you have a chance to heal more. I too jumped in to eat everything I could as soon as I could and paid the price. It takes some people several months or more to completely heal. Give yourself time - easier said than done I know!

As for work, hmmm I am at 16 months and most of the time I am ok with comments and such but at first it felt like all anyone did was comment on how good forbidden food was. I still feel that way especially when relatives bring gluten goodies into my home. Others don't get it. We tell ourselves we are the healthy ones, and we are, and it sounds trite but it just takes time. <_<

sandsurfgirl Collaborator
sandsurfgirl
Posted

If you are new to this you may want to leave the sweets & treats and other hard to digest things till you have a chance to heal more. I too jumped in to eat everything I could as soon as I could and paid the price. It takes some people several months or more to completely heal. Give yourself time - easier said than done I know!

As for work, hmmm I am at 16 months and most of the time I am ok with comments and such but at first it felt like all anyone did was comment on how good forbidden food was. I still feel that way especially when relatives bring gluten goodies into my home. Others don't get it. We tell ourselves we are the healthy ones, and we are, and it sounds trite but it just takes time. <_<

It was six months before I had one symptom free day. I was on a simple clean diet for quite a long time. It does get better!

mamabear272 Explorer
mamabear272
Posted

I feel your pain! I am 3 weeks in and was feeling great until last weekend. We went out of town and despite my best efforts, got glutened. Today I am in bed with the heating pad, vicodin and Ativan. I am in so much pain!

I also know what you mean about feeling so much worse now that you know what it feels like to feel good. It was just normal for us before.

mushroom Proficient
mushroom
Posted

You just go ahead and vent away, Kimbalou. That's quite okay - we all have the need now and again. I had been wondering how you were doing, not having had any progress reports for a while. I took that as a good sign. So it seems most of the time you are okay?? except when you make a mistake! That is actually positive. Yes, we all make mistakes, and sometimes they are out of ignorance and sometimes because it is the easier thing to do (trust someone when we shouldn't).

Yes, the bloating is a pain and yes, the effects often are worse than when our body was used to dealing with gluten all the time. As for the constant exposure to gluten goodies, lots of us have found it helpful to look upon gluten as rat poison :P because that's the kind of effect it has on our bodies. Even looking at those gluten-laden goodies now, I feel revulsion, not desire :D As for the bloat, I still get it and I am beginning to think that I am going to have to give up bread entirely and just stick to rice. I am going to make a loaf with my favorite recipe today, and if that makes me bloat my life of sandwiches is over :o Drat, there goes another convenience food. Sometimes it seems like this whole food thing was sent to vex us, and if food wasn't necessary it would be much easier just to avoid it entirely :unsure: See, I'm having a mini vent of my own :lol:

lovegrov Collaborator
lovegrov
Posted

The caramel flavorings I've seen have been gluten-free, but check ingredients ot be sure. Caramel color is gluten-free.

richard

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Raebies Newbie
Raebies
Posted

The caramel flavorings I've seen have been gluten-free, but check ingredients ot be sure. Caramel color is gluten-free.

richard

Not all caramel color is gluten free. I glutened myself with lunchmeat containing caramel color this week. It is still an iffy ingredient.

kareng Grand Master
kareng
Posted

Not all caramel color is gluten free. I glutened myself with lunchmeat containing caramel color this week. It is still an iffy ingredient.

In the US, it isn't hiding gluten. Maybe it was something else that bothered you.

mamaw Community Regular
mamaw
Posted

For some it can take a couple years to feel better, others have instant rellief... venting is good so when ever you need to let it out go for it..You are right about sweets from the lips to the hips! But we all need a bit of pastry TLC once in awhile... Why don't you make yourself a little gluten-free safe box for work & when people bring in glutened no no's you can go to your stash & enjoy a treat knowing you are not going to be ill & you are not feeling deprived... I always have a box in my care & a protein bar , cookie or something in my purse just in case I meet an old friend by chance & they say lets have coffee & play catch-up..

For your tummy issues have you tried digestive enzymes, & probiotics? Miralax helps me get rid of the gas & bloating ...plus there are so many foods that can cause bloating. The cabbage family does it for many...

Another suggestion is to make a gluten-free goodie enough to share & maybe someone will find out that it isn't like eating cardboard & enjoy it then when the time comes again they may realize your need as well.. maybe wishful thinking...,

My daughter is a physcial therpists & sales reps are always bringing in lunches... they always remember to bring in a gluten-free lunch for her or something they all can eat. Many times they order grilled instead of fried chicken so she is exactly like everyone else... And at times they have to go out of their way to get it.., they have even called ahead & asked her to find a place where they can get gluten-free if they are not familiar with this area...

Hth

mamaw

obaketenshi Rookie
obaketenshi
Posted

Oh man I feel your pain here, I got a taste of what my gut would feel like healthy, only to have it snatched away! I didn't think contamination was going to be such a huge issue, but apparently I'm also one of the unlucky ones that is sensitive to it.

I miss donuts the most. :( Or at least, going out for donuts, instead of possibly making my own. Going to a donut shop and hanging out was a huge part of my life prior to this. I am thinking of all the things my husband brings home from work and how I won't be able to eat it anymore.

psawyer Proficient
psawyer
Posted

Not all caramel color is gluten free. I glutened myself with lunchmeat containing caramel color this week. It is still an iffy ingredient.

Caramel color is one of those celiac urban myths that just won't go away.

Here is Shelley Case's take on it, from Gluten-Free Diet A Comprehensive Resource Guide:

Although gluten-containing ingredients (barley malt syrup and starch hydrolysates) can be used in the production of caramel color, North American companies use corn as it has a longer shelf life and makes a superior product. European companies use glucose derived from wheat starch, however caramel color is highly processed and contains no gluten.
[Emphasis in original]
okieinalaska Apprentice
okieinalaska
Posted

I feel your pain and feel free to vent away. I work in a hospital too (office job though) and have seen the junk food people bring to work. I have finally come to the realization after 6 months of eating gluten-free that I am going to have to bring my lunch and my own snacks every single day to work. I was trying to find things in the hospital cafeteria that would work for me (and the staff was wonderful in trying to help me) but it just wasn't working. They buy the cheapest ingredients they can for their foods and that means nearly every single time they have some kind of wheat filler in it. : (

When people bring those treats in I am not tempted to eat the wheat bombs btw, the pain took that temptation away, LOL but I do feel sorry for myself sometimes. In those cases I try to keep something at my desk that I can enjoy and look forward to instead.

That doesn't even include the times I do something stupid on my own though like eat the communion wafer at church and then realize...OOPS it's a CRACKER!! what was I thinking??? LOL.

GFinDC Veteran
GFinDC
Posted

I used to like cakes and stuff like that too. But now I think back on the recipes I used to make them, and it is not so appealing. Basically, most cakes are a big glump of flour, a big glump of fat, (butter) and a big glump of sugar, maybe an egg or two. And then a little of something to make flavor and color. Not really a very healthy treat to eat, even if you aren't celiac. So, I don't miss those things anymore or even want them.

Taking your own snacks is a great idea. Lara bars, apples, oranges, nanners etc or good and good for you. There are several snack ideas threads on the forum with plenty of suggestions.

anabananakins Explorer
anabananakins
Posted
As for the constant exposure to gluten goodies, lots of us have found it helpful to look upon gluten as rat poison :P because that's the kind of effect it has on our bodies. Even looking at those gluten-laden goodies now, I feel revulsion, not desire :D

I LOVE the rat poison analogy. It's helped me so much to not obsess over things I can't have, and it's a really easy way to explain the risks of cross contamination to people. ("would you eat something prepared on a chopping board previously sprinkled with rat poison? I think not").

I tend to approach things from the "ew, you eat that crap?" standpoint. It makes me feel more positive making it truly my choice. And it's a really sucky truth that you feel worse now that you know what not having stomach issues feels like. I find a lot of people want to use that as an excuse for not going gluten free.... like we should go back to building up a tolerance to it. Ugh. Even with the bad, gluten-ed days, it's not worth it.

You'll heal and will feel better. *hugs* sending lots of positive thoughts your way.

Skylark Collaborator
Skylark
Posted

I feel your pain. We get pizza and sandwiches at work for the weekly meeting. Stupid pizza smells good too. <_< I always have to make sure to bring something gluten-free to eat.

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