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

Finally Making The Connection


MRM

Recommended Posts

MRM Apprentice

hi everyone. i've been lurking for a few weeks and have learned so much from reading everyone else's experiences. since there's not an introduction board i guess this is the best place to start.

i suspect i've had life long issues with gluten/wheat. as a child i had chronic stomach aches. i spent a few years bouncing around from doctor to doctor and never finding the cause of my pain. i even had a trip to the ER with no known cause for my pain. by the time i was in second grade i was on Zantac daily. it didn't really help and i believe i eventually just got used to the pain. other signs i remember from my childhood include craving/eating dirt, reflux, severe dark circles aka "allergy shiners", keratosis pilaris, behavioral problems and chronic headaches. i would often wake in the middle of the night with severe headaches as a young child. my mother knew something was off and tried taking me off dairy. she had the right idea but the wrong trigger. i've also had chest pain and palpitations all my life. again, i've seen many doctors and none have found anything wrong with me.

it wasn't until about 2 years ago that i learned about Celiac Disease. my daughter was born in July 07. she had eczema and GI issues and under the guidance of my naturopath i started an elimination diet for her and i(i was breastfeeding at the time). we were off the top 8 allergens which included wheat/gluten. despite have a young baby and working full time i had never felt better in my life. about a year later we moved across country on very short notice i fell off the diet wagon. about 6 months later we had my daughter tested via IgG testing because we were still having issues. she showed a mild sensitivity to wheat but not gluten. we(daughter, son and i) all went back off wheat/gluten. again i felt great. i wasn't bloated every night, my allergies were tolerable. i didn't have near daily headaches. it was great but eventually we went back to eating wheat/gluten and have been for many months.

fast forward to this month. my son(age 6) has been having some stomach issues since he started school in the fall. this also happens to be when we started eating wheat again. we just had some stool samples sent out for him through our doctor. i'm not sure what they're screening for but our doctor knows i'm getting ready to take us all of gluten again. he's very petite for his age and has always been under the 25% for height and weight. he also has behavioral problems nearly identical to mine and allergy shiners. i will be asking to have him screened for celiac disease in the very near future.

while gearing up to go gluten free i've been able to avoid gluten for days at a time and have noticed that i react to wheat/gluten very quickly when i do have some. i get a headache almost instantly, waves of pressure in my head and sinuses and often get heart palpitations. i also have some severe fatigue and can barely get through the day without taking a nap with my daughter despite 7-9 hours of sleep at night. in the last month i've had allergy testing, both skin and blood, and a Celiac blood test. allergy testing was negative for wheat and the Celiac testing showed a reaction but within the normal levels. i guess my next step is to push for more blood work and a biopsy before i kick full swing into our gluten free diet. hopefully i will have some answers soon. thanks for reading all this.


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



Celiac.com Sponsor (A8-M):



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
      132,212
    • Most Online (within 30 mins)
      7,748

    Melissa McGowan
    Newest Member
    Melissa McGowan
    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.