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Worrys About The Future.

goldyjlox

By goldyjlox
in Coping with Celiac Disease

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goldyjlox Contributor
goldyjlox
Posted

I was just DX with Celiac in August, but knew I might have it a year in Jan 06 but was pregnant so my Doc told me to stay on my gluten diet and I did with no problems. I did not get sick to often maybe a couple times a year I would have a bad "episode" and it would last for a week or two and be gone and BC I didnt know I was Celiac I went back to eating Gluten. I have been gluten-free for maybe a month and a half and I can really notice the difference, but as I mentioned I never really got ill so I cant say for sure that I am gluten-free. I still buy potato chips and candy and eat alot of what I ate before I jsut check the labels. However I still think that I am not doing good enough, maybe I should change more of my foods and then I will at least knwo for sure. I read alot, read some good books on Celiac and have to admitt this scares me, all these other auto immune disease, and cancer is my worst fear. I am a young mother, my children (3 1/2 and 12 months) are my life, and I am so scared of not being there for them. Both my children have shown signs of Celiac so they have had bloodtests, we are waiting for the results.

I know that I should live life to the fullest and not think about the bad, gluten-free is the best way to prolong life. I think that being upset wont get me anywhere. I dont dwell on it, but it is on my mind...especially when I read things. And why is it when you tell people, they always say stuff like.." i am so sorry, or that to bad that you have that...or Celiac is so bad"?? Sure know how to hurt you.

Dis anyone else feel this way in the beginning?? And does it ever go away. I am scared for my kids also, being a child with Celiac and not being able to eat or do what other kids do would be difficult.

Thanks for listening. I am going to get ready now to go to my moms for thanksgiving dinner...I am going to bring my gluten-free meal with me...Rice, porkcop and veggies!!!! While everyone eats their turkey I will eat my own dinner. And at Christmas, I am goingto make my own gluten-free turkey!!!!!!!

Jess

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Guest thatchickali
Guest thatchickali
Posted

I would say you are off to a good start with your positive outlook on the holidays.

I'm struggling right now with not wanting to be with family.

Don't expect constant success, but strive for constant growth

goldyjlox Contributor
goldyjlox
Posted
  • Author

Thanks.

Ridgewalker Contributor
Ridgewalker
Posted
Don't expect constant success, but strive for constant growth

Excellent advice for everyone!

-Sarah

Di-gfree Apprentice
Di-gfree
Posted
QUOTE(thatchickali @ Oct 7 2007, 06:56 PM)

Don't expect constant success, but strive for constant growth

I agree; excellent advice. I'll have to write that down on my desk calendar.

Joss Rookie
Joss
Posted

At least you know about this now and you can take steps to be healthy. Think how awful it would be if you were unaware of the problem.

Try not to worry. It won't help anything and it will make you ill.

Mr. Pep'r Contributor
Mr. Pep'r
Posted

I am new to the Celiac World and I have to admit that up to this point all my forum surfing was centered around diesel trucks, boats, and airplanes. :huh:

Coping with this since July I feel thankful that I now know what is wrong with me. The first month was great and I noticed a big change.....but September was not so good, I think I got some bad chips or contaminated meat in my naked burrito at Qdoba.

My wife is very supportive with my new diet and she understands possible heath risks down the road. Since my dad battled with esophagical (sp) cancer and now know what I know we believe he also had Celiac. Having an Italian father pasta and bread was a nightly event. I am very diligent with what I eat. With this being said the stress I am going through with eating out is very high. I just do not trust the people preparing my food and getting that quick meal on the run is over IMHO. In my line of work.......I am on the road for about half the month. I am worried that this is going to get in the way of my career.

I am glad I know but at the same time it is not helping with the feelings I currently have. Does this make sense?

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Idiote Savante Goddess Rookie
Idiote Savante Goddess
Posted

I'm not officially a Celiac yet (waiting for lab results), but I have Obstructive Sleep Apnea which means that very likely I'm going to spend the rest of my sleeping life hooked up to 6 feet of plastic hose and a CPAP machine. I went through a grief process after my diagnosis, even tho' I knew that the treatment for the apnea was working and working well. My friend Cyn was diagnosed with celiac disease about 6 months later, and she went through the same sort of grief process -- you are relieved on the one hand to know what's causing the problem, but you still get twisted up in the realization that you're no longer "normal". It defies logic. In some of the Asperger's circles I've run in, because of one of my children, I've come to terms with the idea that "normal is a setting on the clothes dryer". Just like we can't all be neurologically typical, some of us can't be food tolerance typical.

So grieve for the old, pre-diagnosis You, get professional help if necessary, and go forward with the new You --- remembering that the new You is in no way inferior to the old -- just different.

miles2go Contributor
miles2go
Posted

I remember being afraid of eating on the road or on the trail and it wasn't a nice feeling, but it does get better over time.

Things that you used to eat can easily be translated to gluten-free; there are a whole host of crackers, breads and cereals out there that weren't a few years back. I think most of us have gravitated to the Paleo diet over time, but without stoves and microwaves at hand things may look a little tricky at first glance. Everyone has different sensitivies so I'll just list things that I would eat on the road and maybe you can find something in the between.

Fresh fruits

Fresh veggies

Nut-thins crackers

Rice cakes

Nut butters

Mary's Gone crackers

Cheese, cheese, cheese

Hard-boiled eggs

Trail mix of your own making

Oberto jerky

Potato chips, Terra chips, Pirate's Booty, Cheetos (if in USA)

Anything pickled

Canned meats/fish

If you can take along a small cooler, your possibilities are endless and if you are desperate, some fast food places will accomodate you if you're willing to take the risk. I've had luck with Wendy's chili, baked potato and McDonald's fries. There are gluten free menus for fast food online if you care to look. I wouldn't recommend any of them, though, as the possibility for cc is pretty high.

Welcome to the club. It gets easier over time, really. :)

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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