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sarahdea

By sarahdea
in Coping with Celiac Disease

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sarahdea Rookie
sarahdea
Posted

Hi! I have not been officially diagnosed with Celiac ... so I'm not sure if I have NCGI or what.  Just looking for some support--this forum seems great. :)

 

I got pregnant and miscarried last month, and that's when the gluten intolerance started. I was having terrible gi episodes and self-diagnosed by "testing" my body (while quite ignorant to the way Gluten works!). Bad Idea.

I wound up in the ER, my stomach so bloated it cut off my bladder and they had to catheter me. 10 hours of intense pain and they tested me for everything under the sun and found nothing. I asked for the gluten blood test and it came back negative...but my body is telling me otherwise.(plus that was the week I was eliminating and re-introducing gluten into my system to test it)

 

I have now been totally gluten-free since 2/7 and was still having annoying GI issues. I cut out dairy as well about 3 days ago and the difference is night and day.

 

I DO plan on seeing a gastroentologist eventually, but I have to pay off my $900 ER bill first! (yuck).

 

I feel like my food options have dwindled down to nothing, and I'm so afraid to eat anything that isn't a reguar meat/fruit/or vegetable!  If I didn't cook it, I am afraid to touch it. The pain was SO SO bad. :(

 

...any advice/support tips??

 

--Sarah

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!  Check out the newbie thread located under  the coping section.

 

It takes a long time to heal from celiac disease (months to years).  I know you're not officially diagnosed, but that's okay.  I am, but my husband is not.  The proof is in the diet.  I am also sorry to hear about your miscarriage!

 

I find that we do not go out for dinners and I have made our house gluten free.  It just makes it so much easier.  Gluten eaters (like my kid) can get their fix outside the house.  

 

In the beginning, focus on cooking simple foods to allow better healing.  You should take some supplements.  Ask for your lab tests from the hospital to make sure you are not anemic, etc.  It's always good to have those on hand for future reference.  

 

We are all here to help and support each other!

sarahdea Rookie
sarahdea
Posted
  • Author

Hey, thanks! I noticed the "Newbie" thread about 30 seconds after I posted this. :)

 

I consider myself lucky in that I am already fairly self-educated in nutrition... I already read labels, and shop at the health food store, and I know how to cook.  However, as I read more I am learning that this is not something that is ever going to go away/get better, and it's also something I really need to be cautious about (cross-contamination, etc).  I'm also now wondering what else could be related, such as weird PMS-like depression for no PMS'y reason...

 

I went to the health food store on my break and picked up some probiotics and almond milk for my coffee.

 

My latest food-related dilemmas are (1) black coffee is gross-hence the almond milk- and (2) I am sick of cooking already and have a ton of stuff to do tonight besides cook. But eating out ... is out.  Gaaa.

 

Hey, at least I don't feel all bloated and gassy today. That's a plus. LOL

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi Sarahdea and Welcome!

 

Just wondering if it's possible that you have a dairy issue and not a gluten issue?

sarahdea Rookie
sarahdea
Posted
  • Author

Hi Sarahdea and Welcome!

 

Just wondering if it's possible that you have a dairy issue and not a gluten issue

 

 No, I am sure it's gluten. I spent a couple of weeks "testing" it, and it was gluten that made me so miserable I wanted to die.  It was as though I had a migraine-level headache in my gut when I ate any breads/pastas, etc etc. The pain was excruciating, stabbing pain, in my abdomen and in my appendix and my stomach would get all distended like I'd eaten a basketball. It was HORRIBLE!  I mean want-to-die misery. Send me to the ER misery.  That all stopped when I stopped eating gluten.   The dairy was giving me quite a bit of gas and constipation, but I was able to pass it, it wasn't KILLING me. And I was loading up on dairy after I quit gluten (before I realized that dairy sets off the villi when they are inflamed). 

 

However, after quitting dairy for 4 days now, I feel really good. Comparatively. Better than I have felt in 2 months. It's nice not to be a fart machine, LOL.

1desperateladysaved Proficient
1desperateladysaved
Posted

Welcome Sarah,

 

Most of us started a little overwhelmed.  You will discover (at least I did) that there is always something else to eat.  My pizza includes nuts flour crust, mango sauce, eggs, and bacon topping!  Every time I lost a food, I found others that I liked.  I hope that that will happen for you and besides you will feel better and than it is worth it!

 

D

moosemalibu Collaborator
moosemalibu
Posted

Welcome Sarah!

 

For new recipes to try out to avoid getting bored try paleo blogs and gluten free blogs. The investment in a crock pot is a must. Makes meal prep so much easier! Also- prepping lots of food ahead of time and pulling out of the freezer is an option, too. Hang in there! It will get better over time.

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