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

Need Advice To Cope Until Testing Is Done......

roxieb73

Recommended Posts

roxieb73 Contributor
roxieb73
Posted

I have the worst muscle weakness. It is a chore to even walk to my car. I had been on a gluten free diet for a couple weeks and was feeling much better. I then tested negative on the antibody test. My doctor thinks it is a false negative and has ordered me back on the gluten. I now feel worse than ever. Main problems are fatigue, headaches but the worst is the SEVERE muscle weakness. I feel like an invalid and I just don't have the strength to do anything. Any ideas on what might help until the antibody tests and biopsy is done. I am looking at another month before I can go gluten free.

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

Celiac.com Sponsor (A8-M):


MitziG Enthusiast
MitziG
Posted

I wish I did! Unfortunately this is why many people on this board are self diagnosed celiacs. The gluten challenge is simply to difficult to maintain for the required time.

It is important that you remember, even doing the challenge, you will likely still test negative for celiac. Only 1 out of 133 have celiac disease. And testing will only identify 70% of them!

Non Celiac Gluten Intolerance affects as many as 1 in 14 people however, and there is no test for it, other than an obvious unpleasant response to gluten!

It seems clear that gluten is a problem for you. Do you NEED the dx? Is there a chance your dr would dx you based on your response to the gluten challenge alone? Some do, if they are enlightened.

I wish I could offer advice for getting through this, all I have is hugs though! Hugs!!!

roxieb73 Contributor
roxieb73
Posted
  • Author

I wish I could just go gluten free but I do need the diagnosis. I am certain several others in my family would benefit from a gluten free diet but getting them to do it will not be easy!!! I need this diagnosis to get them to listen to me. Also my son's father will not put him on a gluten free diet at his house without it. I am fairly certain and so is my doctor that both my son and I have Celiac. Now we just neet to prove it.

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. Rogol72
      - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they...
    2. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      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...
    3. 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/
    4. Scott Adams
      0

      Tahini Swirl Fudgy Brownies (Gluten-Free)

    5. Butch68
      - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      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...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,222
    • Most Online (within 30 mins)
      7,748
    Amy E Rubin
    Newest Member
    Amy E Rubin
    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

    • Rogol72
      Guinness, can you drink it?

      By Rogol72 · Posted

      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • 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.
×
×
  • 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.