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

Worsening Symptoms

browneyedgrl73

Recommended Posts

browneyedgrl73 Rookie
browneyedgrl73
Posted

I posted about a month ago wondering if I had celiac disease. I have been to a doctor since then, and am going back in 4 days to get the results of my blood test. He put me on a lactose free diet in the meantime, but that doesn't seem to be helping. My symptoms are spiraling out of control rapidly. I can barely eat anything without feeling so sick to the point that I have to lie down. My parents are yelling at me to eat, but honestly I can't. The only meal I can manage is breakfast, because I feel decent when I wake up. It's all downhill from there.

My question is: can symptoms worsen in a matter of several weeks, like they have for me? I've lost 5 lbs this week because I can barely eat! :o

Thanks!

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

Yep, that happens. I had so many up and down days before I was gluten free. Once my symptoms started they just got worse and worse.

When I went gluten free then my symptoms didn't start really improving until the 3rd month. Some people see differences right away and some it takes alot longer.

Do you have any idea what blood tests he did?

mytummyhurts Contributor
mytummyhurts
Posted

Yeah, this happened to me too. My symptoms started gradually and then it seems like it was BOOM really sick a lot of the time.

frenchiemama Collaborator
frenchiemama
Posted

I had moderate celiac disease symptoms for about 10 years and DH for 2 years. Then in the weeks before I was diagnosed everything just seemed to take a nosedive after being pretty stable for so long. I was pretty sick for a few weeks.

jknnej Collaborator
jknnej
Posted

Me, too. I always had stomach issues, but before I got my blood tests I got SO sick to my stomach for about two months that I had to force myself to see a specialist b/c I could barely even work. That's when I found out about celiac disease.

browneyedgrl73 Rookie
browneyedgrl73
Posted
  • Author

Thanks for responding!

Kati- No I do not know what tests he did, but he said he was doing "every test possible" (and he sure took enough blood)

I'll post when I get the results

Guest kmmolina
Guest kmmolina
Posted

I'm fairly new to celiac so I don't know if this is comon or just me. When I finally went to the doctor and he was going to have me do the blood tests and the biopsy he told me not to be gluten-free because he didn't want to get a false negative. He actually told me to "splurge" on gluten!!! :o So I did. By the time I got to the biopsy I was feeling horrible...even worse then before.

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

Celiac.com Sponsor (A8-M):


mytummyhurts Contributor
mytummyhurts
Posted
I'm fairly new to celiac so I don't know if this is comon or just me.  When I finally went to the doctor and he was going to have me do the blood tests and the biopsy he told me not to be gluten-free because he didn't want to get a false negative.  He actually told me to "splurge" on gluten!!! :o  So I did.  By the time I got to the biopsy I was feeling horrible...even worse then before.

<{POST_SNAPBACK}>

Yes, your doctor is right. You want to be on gluten when you have your tests done otherwise your intestines may heal and then you would show negative for celiac disease. It does really suck that you have to continue to be sick, but at least you know it wasn't all for nothing. Did your biopsy come back positive?

Guest kmmolina
Guest kmmolina
Posted

Yes, it did come back positive and I have been trying to be gluten-free since then. The obvious stuff, i.e., wheat bread, wheat pasta...that's easy. It is eating out, eating at other people houses, and the hidden stuff that is a constant challenge.

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 Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley...
    2. MogwaiStripe
      - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease. Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/
    3. Scott Adams
      0

      Tahini Swirl Fudgy Brownies (Gluten-Free)

    4. Butch68
      - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too. is this everyone’s experience? Can I drink it? I get dermatitis herpetiformis and don’t get instant react...
    5. trents
      - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,216
    • Most Online (within 30 mins)
      7,748
    Athenablue
    Newest Member
    Athenablue
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Gluten Issues and Vitamin D

      By MogwaiStripe · Posted

      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Guinness, can you drink it?

      By Butch68 · Posted

      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.