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 A Newbie


zebra

Recommended Posts

zebra Newbie

Hi- I'm new here. I've suspected for quite some time that I've had 'something' wrong. I finally added 2+2=4 and figured out gluten. I've been sensitive to dairy for years and avoid that, now its gluten too.

I've lost over 50 lbs since the start of summer. It seems so much is limited now because of dairy AND gluten. I'm waiting to see a gastro in a couple weeks and I know he is going to order more tests so I need to keep the gluten going but I can NOT spend hours a day in the bathroom (both ends). The vomiting is new since august/september.

I think I'm still in denial mode. Add in the fact that I won't eat red meat and my options are so limited .. or so it feels.

Anyone wanna have a 'welcome pity party' :)


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



Celiac.com Sponsor (A8-M):



Skysmom03 Newbie

Have you told them how sick you have been. My husband got down to 110 lbs ( he was only 145 to start with) and really I don't think he would have made it another week. They could tell by speaking with him on the phone how week he had become and the doctor agreed to let him begin the diet. The damage to his intestine was still quite obvious. Maybe you could call the GI and speak with the nurse about it. Tell her the situation... Maybe she could speak with dr and get you in sooner or he could allow you to start the diet.

Skysmom03 Newbie

My husband had same issues as you. Bathroom 50 times a day. Literally and throwing up. Quite a scary situation to live through. He could eat nothing. I was slowly watching him starve to death. He now weighs 185 lbs!!! :). Never been that heavy ever. Dr said his intestines were one of the worst he has ever seen. Completely smooth. Good luck!!

zebra Newbie

I've told them. Part of the issue I've spent years running around with my PCP, who is convinced everything would be 'fixed' if I wasn't anemic. :angry: . I finally got a referral to the gastro when the PCP passed me off to a PA in the office. While I have the weight to lose, and I welcome weight loss, I can not spend hours a day in the bathroom.

The gastro office was wonderful. They totally understand, but due to other issues I refuse to see a female dr so the first available male appt was 12/3. People tend to write me off as nuts since I have some psych issues but those issues are being managed and honestly, I can not make up the puking, the bathroom issues, the sweats, the dizzy, the stomach pain.

shadowicewolf Proficient

-snort-

I too was written off with its all in your head issues.

yet i was throwing up several times a week and had "D" daily.

Lisa Mentor

I think I'm still in denial mode. Add in the fact that I won't eat red meat and my options are so limited .. or so it feels.

Anyone wanna have a 'welcome pity party' :)

I hope you get good news regarding your GI visit. Good news meaning that you find an answser to your distress. I would certainly recommend a full biopsy with 8-10 samples, should you have an endoscopy exam.

The following are the celiac specific blood tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

If Celiac is your issue, no pity party is needed. It's an adjustment to your diet and shopping and good health is right around the corner. :D

Skysmom03 Newbie

Good luck and let us know how it goes! Hopefully you can get some quick relief. My son's doctor ( ped. Gastro) said most pcps wants to beleice everyone has celiac or no one at all....guess you got the second!


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



Celiac.com Sponsor (A8-M):



zebra Newbie

My appointment can not come soon enough. I've been compiling a list of symptoms and once I get that man cornered in the office.... He may never get to leave.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,866
    • Most Online (within 30 mins)
      7,748

    Gabrielle Lafond
    Newest Member
    Gabrielle Lafond
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
    • Scott Adams
      I am so sorry you're going through this. It's bad enough to fight for a diagnosis and manage this disease, but to have your partner use it as a weapon against you is truly devastating. What you're describing isn't just a lack of support; it's abuse, full stop. Controlling your food and money is cruel, and his pleasure in your misery is chilling. Please hear this: the kindness from that woman at the food pantry is what you deserve. It's a glimpse of the real world, where people care. You deserve to eat, to heal, and to have peace. His actions are the biggest barrier to your health right now, and you are not broken—you are surviving in an impossible situation. Don't give up on that lifeline you've found.
    • Colleen H
      Thank you.. Christina My anxiety is through the roof.  I think it was from eggs.  I really don't know because my eyes feel sore. Like I'm allergic to them.  I was defient in B12.   My heart is pounding and it won't stop.  Not sure what to do.   I don't have much support other than this forum.    Colleen 
×
×
  • 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.