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Coping With celiac disease

Eve

By Eve
in Coping with Celiac Disease

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Eve Newbie
Eve
Posted

I think I am doing this right, If not forgive me.

My Name is Eve and I am 27.. I found out 2 years ago about a sever Oat allergy and was never told about Gluten. 6 months ago when my mother tested positive for celiac disease. The rest fell into place.. Since then I have been trying to be gluten free...

I have been having issues with being a newbie.

Mostly it is a lack of support and understanding from all around. I am adjusting to a gluten free lifestyle. I am also in the 1 % of the population that is allergic to cow and chicken.. that means anything to do with them. Some days I think If I lived in a monastery in India I would bee fine... Just not here

Anyway. My issue is with support. I work and go to school and have huge issues with missing both. I have not lost alot of days to this particularly due to my Midwestern work ethic but.. some days I just can't do it. I have had issues with explaining to others that this process of becoming gluten free is just that .. a process.

I messed up and had wheat about 2 weeks ago and am still suffering .. does anyone else understand?? Some days I want to scream I am not a Hypochondriac! I just feel like crap because I somewhere ingested something that had wheat in it and I don't know where!!!! arg!!

Has anyone written up a letter explaining the trials and tribulations one must go thru just to be gluten free. I would love to give one to everyone I know. It is just so frustrating to go thru a list of symptoms and blah blah blah....

I don't want to discuss why and how I feel sick with everyone. But I don't want to be questioned on it every time either..

Any suggestions..

Maybe I just needed to rant...

Thanks

Eve

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carriecraig Enthusiast
carriecraig
Posted

Hi Eve,

Welcome and I'm sorry that you are struggling through the gluten-free diet. I know exactly how you feel though. I've been on the diet almost 10 months now, and I had 2 slip-ups this weekend while at my parents house. I've felt like crap for a couple of days now. Fortunaltely, I know what the culprits are, so I won't be eating those again - but I am so frustrated with myself!

Feel free to rant at anytime - we're hear to listen.

Nevadan Contributor
Nevadan
Posted

I posted this link about coping with celiac disease several days ago - you might find it relevant.

Open Original Shared Link

George

Lollie Enthusiast
Lollie
Posted

welcome, Eve!!!!!

I know how you feel.....I have my own rant posting ....... :blink:

I just try to keep positive. I come here to let it all out- feel free to do the same!

I think the letter is a good idea- it seems like so many people I have explained it to still just don't get it. If you gave out a letter with numbered points, when they asked you the same thing again, you could just say, "Refer to point 2a in the second paragragh.....!" :D:D:D

Lollie

plantime Contributor
plantime
Posted
I don't want to discuss why and how I feel sick with everyone. But I don't want to be questioned on it every time either..

Any suggestions..

Maybe I just needed to rant...

Thanks

Eve

Yep, I understand this part. I get so tired of trying to explain to people why I am so sick. When I am glutened, I really don't want to talk about it, not to anyone! If someone does come up with a letter, please let me know. Maybe one of these wonderful, supportive, literate spouses that post on here sometimes would do this for us!

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

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      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

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