Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I'm New...

sarahdea

By sarahdea
in Coping with Celiac Disease

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    2. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    3. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    4. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
    5. cristiana
      - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott. Have manufacturers ever said why that should be the case?
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,438
    • Most Online (within 30 mins)
      7,748
    rednecksurfer
    Newest Member
    rednecksurfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By cristiana · Posted

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.