Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Newly Diagnosed


Jill0711

Recommended Posts

Jill0711 Rookie

Hello everyone! I wanted to jump in and say hi. I was diagnosed a week ago tomorrow so this is all relatively new to me. I consider myself blessed because I was only miserable for six months before my diagnosis. I know others waited much longer. My main symptoms were pain, bloating, and headaches. The D didn't come until the last month. My blood work was negative, but the biopsy was positive.

I'm just trying to figure everything out, I almost tasted my daughters pasta last night to see if it was done! It is just a whole new way of looking at things. Thanks to all who post on here. Your experiences have been really helpful.


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



Celiac.com Sponsor (A8-M):



beefree11 Newbie

welcome Jill :) This is THE place for help and suggestions. Right now Im gonna hit the recipes.

I understand how you must stop yourself and it will take some time. I must dedicate half of my cooking time - first, for my daughter's gluten-free meals then prepare my husbands meals. He is slowly coming around to becoming gluten-free to help our daughter, but it isn't easy for him.

I am still learning about cross contamination (sometimes the hard way with daughter becoming ill :( ). Any questions, feel free to ask.

SGWhiskers Collaborator

Spend time here reading and listen to advice and experiences. I've been at this 2.5 years and this community has had a huge impact on improving my life. It's become second nature to think about everything. Last month, I purchased a new kind of gluten-free spagetti that looks like regular spagetti and when it was time to test the gluten-free noodle it was pretty strange to talk myself into eating it.

Keep educating yourself and get strict fast are my two biggest pieces of advice. A plain Hershey's bar is also gluten free for those early days when you are feeling deprived.

Jill0711 Rookie

Thanks for the welcomes. Today I am feeling pretty positive, but who knows what tomorrow will bring. Now I guess I actually have to learn how to cook :)

Marlie Apprentice

My daughter went gluten free a few weeks back. Try the quinoa spagetti noodles. They taste and look normal. Also try the gluten free snyders pretzels. I'm the pickiest eater in the world and they taste normal. Also today we tried the schar bread sticks. Although bland like an ordinary bread stick would be you can't tell they are gluten free.

SaraKat Contributor

I was just dx'd in Sept and I was at a party the week later and someone gave me a piece of pie for dessert and I started eating it, my best friend was like- are you supposed to be eating that?? Totally hard to break the habits, I can relate!

Where was your pain pre-diagnosis?

okieinalaska Apprentice

Welcome! I just got my confirmation last Thursday so almost the same day as you. :D

I was making gluten free brownies and accidently grabbed the PAM spray for baking (it has flour in it!) Had to use a different pan and I chucked the PAM in the trash.

As for pasta, I have found a pasta my family likes and can't tell the difference so we mostly eat that. (Sam Mills)

:)


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



Celiac.com Sponsor (A8-M):



Jill0711 Rookie

There is definitely a learning curve and breaking old habits. My pain is centered right between my rib cage, right near the bra line. It generally feels like someone is stabbing me. At times it was worse than others, but it landed me in the ER a couple times because I couldn't handle the pain. It is funny because the doctor didn't think the pain was related to celiac, but it has gone away since I've been gluten-free...and it came back last night after I was glutened by my well meaning husband. It just goes to show that we know our bodies best :D

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,788
    • Most Online (within 30 mins)
      7,748

    SClark
    Newest Member
    SClark
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Waterdance
      Thank you for saying that. That doctor diagnosed me with IBS with no follow-up so the relationship is already concluded. If I pursue diagnosis further I'll request someone else. 
    • Rejoicephd
      Hey everyone. Thanks again for your suggestions. I wanted to give an update and ask for some follow-up suggestions from you all.  So I did go through all of my food items and stopped eating things that were “gluten free” and switched over to the “certified gluten free” ones (the ones with the g symbol). I also stayed away from restaurants except once and there I ordered something raw vegan and gluten free hoping for the best. I also stayed away from oats and soy and dairy. I've also been increasing my vitamin B complex. I've been doing this for about 12 days and while I know that's not that long, I'm still getting sick. Sometimes having diarrhea. Sometimes getting headaches and having necklaces. Sometimes waking up feeling horrible brain fog. I did go to my GI doc and they did a blood test and found my TtG-IgA was in the negative range (and a lower number than I'd had before). I also had normal levels of CRP. My stool showed no elevation of calprotectin and no pathogens. My GI doc said the symptoms could be related to a gluten exposure or to IBS. I'm keeping a food diary to see if I can narrow down whats going on. I know I have good days and bad days and Im trying to isolate what makes a good day versus a bad day. Generally so far it looks like if it eat something super cautious like raw vegetables that I chopped myself into a salad and almonds, im fine but if I eat something more complex including, say, chicken and rice (even if packaged and certified gluten free or made by me with gluten free ingredients), it may not go so well. I may end up with either a headache, neck tension, brain fog, and/or diarrhea that day or the morning after. Any other thoughts or suggestions? I am planning to start tracking my foods again but I wanted to do it in more detail this time (maybe down to the ingredient level) so are there any common ingredients that celiacs have issues with that you all know of that I should track? I've got dairy, oats, soy, eggs, corn, peas, lentils on my “watch list”. Other things I should add? I'm hoping if I track for another two weeks I can maybe pin down some sensitivities. Appreciate the help and tips. Thank you so much!!
    • trents
      "My GI doctor ruled out gluten celiac entirely because I didn't have skin rash." Are you serious? The overwhelming majority of people with confirmed celiac disease do not have the rash. It's called dermatitis herpetiformis. It is found in only about 10-15% of those with celiac disease: https://www.celiac.ca/gluten-related-disorders/dermatitis-herpetiformis/ If your GI doc is operating on that piece of misinformation, I would start looking for a new GI doc because I wouldn't trust him/her in general. 
    • Waterdance
      Thank you so much for your informative reply. My GI doctor ruled out gluten celiac entirely because I didn't have skin rash. I had a histamine response to wheat and milk by scratch test by an allergist. I'm not always symptomatic but the older I get the worse it gets. I've found through trial and error that I can react to all grains. Buckwheat and corn included. I tolerate some rice but I wouldn't want to eat it every day. Potato is pretty good for me but I can't eat it every day either. I compromise with squash. I tolerate it well. The Best I feel is while fasting. When I'm in pain and discomfort it's easy to fast even long term, it helps. The problem I'm having is I'm great with my diet for 3-6 months then I start to cheat again. When I don't get immediate symptoms I get this foolish false security. I react then go back to my diet. Rinse and repeat. I suppose discipline is my real issue. I'm very tired of perusing a diagnosis. The constant gaslighting and dismissal is exhausting. Thanks for your suggestion of the autoimmune protocol. I will give it a try. Perhaps the guidelines will help me to navigate better.   Thanks again.
    • Scott Adams
      This isn't the first potential celiac disease treatment in the pipeline that failed. There have been others...
×
×
  • Create New...