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

Help! Am I Normal?


jcronan

Recommended Posts

jcronan Rookie

HELP!

I am new to the forum and to the Gluten Free lifestlyle. I am still waiting to hear back on the genetic testing. I had an Endoscopy & Colonoscopy done last month and they were inconclusive for Celiacs, but confirmed Chron's. My GI seems to feel based on my symptoms and medical history that there is a good possibility that it is either Celiacs or some other related intolerance. It has been 2 weeks since I took the blood test and I am going crazy waiting. I was told this often has to be sent out to an out-of-state lab and it could take longer than most tests.

I have many of the symptoms of celiacs including a diagnosis when I was an infant. It was never explained to my mother at the time and when I started eating solid foods she simply included wheat/gluten based products in my diet. I have had severe headaches (including migranes) and sinus issues- however my stomach issues have been off & on until the past few years. Now I have issues after almost everything I eat. Additionally, I have had a great deal of weight gain in the past 2 years, desipte a healthy diet & regular exercise. I even ran my first marathon a few months ago. As soon as my training stopped, the pounds came on like crazy even though I still run and cross train frequently.

After reading a great deal on going Gluten free I decided that I would take the plunge and started a few days ago. I do not eat meat (only fish) so it has not been all that easy.

I am looking for any advice from those who have had similar experience. Should I stick to the gluten-free diet? Should I introduce some meat back into my diet? And most of all, will I stop obsessing over this once I learn more?


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



Celiac.com Sponsor (A8-M):



Korwyn Explorer

If you had a diagnosis as an infant, you have Celiac Disease. It doesn't go away and you don't get over it. Yes, you MUST stick to the diet. See previous statement. :) And I've always considered fish to be meat! :o And probably no, you won't stop obsessing! =) Depends on how seriously you take this disease I guess. I don't think that having an ongoing, continuing interest in your longterm health and extending your life is an obsession. But that is just my opinion. I may be obsessed with it myself and so not the best judge for that answer. :lol:

jcronan Rookie

If you had a diagnosis as an infant, you have Celiac Disease. It doesn't go away and you don't get over it. Yes, you MUST stick to the diet. See previous statement. :) And I've always considered fish to be meat! :o And probably no, you won't stop obsessing! =) Depends on how seriously you take this disease I guess. I don't think that having an ongoing, continuing interest in your longterm health and extending your life is an obsession. But that is just my opinion. I may be obsessed with it myself and so not the best judge for that answer. :lol:

thanks for the information. I should clarify, although I was diagnosed as a child, my mother doesn't believe they ever tested me. Her fading memory & the lack of records going back that far (I am 41 now) is the reason I can't be sure they were accurate. As far as the fish-- I don't claim to be a vegetarian (although I was for many years). I haven't had meat other than fish for over 20 years so it is usually easier to explain that way. Again, I appreciate the advice. I hope that my obsession will help me to keep focused.

Korwyn Explorer

Well if you were diagnosed as a child there must have been some significant indicators sufficient for a diagnosis at the time.

On another note, while not a vegetarian (opposite in fact as I eat mostly meat), there are a number of vegetarians and vegans on the board here. What specifically is it that is causing you to feel it will be difficult to maintain a gluten-free life as a low or non meat-eater?

jcronan Rookie

Well if you were diagnosed as a child there must have been some significant indicators sufficient for a diagnosis at the time.

On another note, while not a vegetarian (opposite in fact as I eat mostly meat), there are a number of vegetarians and vegans on the board here. What specifically is it that is causing you to feel it will be difficult to maintain a gluten-free life as a low or non meat-eater?

I agree the childhood diagnosis does probably mean that it is very likely going to be positive. It amazed me that the doctors would give such a serious diagnosis with so little information to my parents. My mom felt terrible when I told her all of the typical Celiac symptoms that I have dealt with for years and not having thought about going back to the doctors about it.

I think my concern about keeping the meat out of my diet is not having much left to eat. I could imagine if I did eat meat that it would be easier. I do dine out and and travel quite a bit for my job, so I am concerned about that adjustment in those situations. I don't plan on rushing into anything either way. I was just given the name of a highly recommended nutritionist who I plan to consult with before making further changes. I will also looked to connect with some of the vegetarians on the board to see how they have been managing.

Thanks for the support :)

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. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

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

      Gluten Issues and Vitamin D

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

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • 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):



  • Upcoming Events

  • Posts

    • 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.
    • Scott Adams
      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.