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

Possibly Celiac


AzSharouk

Recommended Posts

AzSharouk Newbie

My first post :) . I am going to the doctor Friday for my first discussion about my digestive/bloating/health problems as an adult. Ive had problems pretty consistently since 8/9 years old but always had doctors that didnt listen to me because I am seriously overweight. Havent had insurance in ages, but now I do fortunately.

I am not good about discussing things with doctors: they sort of steamroll over with me. Any suggestions on how I should approach this discussion. I have nearly all the symptoms, except weight loss and proven vitamin deficiencies (I supplement up the wazoo). I dont want to get trapped into thinking this is what I have and miss something else, but I also want to have a strong case for pursuing this. btw, my symptoms: extreme bloating (I can go up 2 clothes sizes in an afternoon!), abdominal pain, severe gas, c/d, hot/cold feelings, fatigue, foot/leg/hand numbness, muscle aches, mouth sores, tooth enamel loss/massive cavities, uncertain food sensitivities, lack of menstural cycle, allergic reactions and rashes to common products.

I think this fits celiac/gluten-intolerance pretty well but are there other things I should be looking at? Any suggestions would me appreciated! I want to be prepared with lots of questions and requests. Thanks


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

You can always try the "I've been hearing a lot about this and I want to rule it out before doing more invasive tests" then ask for the whole Celiac panel.

gfp Enthusiast

You can additionally ask to have someone accompany you and make sure your not streamrolled....

ITs much easier for a MD to steamroll one person than when you have someone to back you up...

Remember its close to 1:100 people have it... so don't get fobbed off with "but its so rare" or "I don't think you have it" like Jestgar says either this or something else is wrong and this can be diagnosed with a simple blood test.

If the MD insists then ask what all the symptoms are... can he test for why you have .... (insert your list)...

Make sure you get a full panel and you need to be eating gluten for a month or so before hand to make sure...

Phyllis28 Apprentice

Write down you list of questions and concerns. I find this works well in making sure I sure I communicate everything I intend to.

rsm Newbie

I'll chime in, I just saw my GP yesterday. I told him I was trying the gluten free diet, gave him my family history and my daughters success story, his reply was "I'm impressed". He told me to keep on the diet and come talk to him in 3 months just to see how everything is going. He said he had sent several people for a Celiac biopsy in the last 20 years and they all came back negative. He also said he was sure there was a lot more of it out there than we realize.

I do have a question, I started gluten free 2 weeks ago, I felt great after the first 4 or 5 days but have really felt crappy for the last 3 days. As far as I know there has been no gluten, I even put the dairy away. Is this normal, do you go up and down for awhile?

Guest Karabear20
I'll chime in, I just saw my GP yesterday. I told him I was trying the gluten free diet, gave him my family history and my daughters success story, his reply was "I'm impressed". He told me to keep on the diet and come talk to him in 3 months just to see how everything is going. He said he had sent several people for a Celiac biopsy in the last 20 years and they all came back negative. He also said he was sure there was a lot more of it out there than we realize.

I do have a question, I started gluten free 2 weeks ago, I felt great after the first 4 or 5 days but have really felt crappy for the last 3 days. As far as I know there has been no gluten, I even put the dairy away. Is this normal, do you go up and down for awhile?

You know I was wondering the same thing because I felt better for a while, but then I felt worse...and now its getting better again. I am hoping that its just the process of my body going through such a change. I went from constant D to C and now im all gassy because im so empty and have been only eating fruit and meat because thats all i could keep down or that i wanted to eat in the past two days.

Archived

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

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

      Guinness, can you drink it?

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

      Guinness, can you drink it?

    3. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

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

      Guinness, can you drink it?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,220
    • Most Online (within 30 mins)
      7,748

    Dye42
    Newest Member
    Dye42
    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
      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
      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
      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
      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
      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.