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

Is It Celiac Or Is It Nerves?


Susan M-G

Recommended Posts

Susan M-G Rookie

I wanted to add a response to "Pinned/Pinner?z" but did not reply right. So I'm just going to ask questions here.. I too have been wondering about things like this term glutening? For quite some time I was sure I was sensitive to wheat, but that I was not celiac because of the negative test I had originally. So I, for at least two years religiously avoided wheat, not realizing that spelt, and other "wheat free" things that were glutinous were also bad. If I cheated on this diet I would feel poisoned, and have diarrhea. I don't recall becoming nauseous. My stomach would tighten up into knots, and then bloat, and it was terribly uncomfortable, to say the least. I had been having this kind of thing since I was a kid, however, and I think I just got used to having stomach aches. My mom always said it was "nerves." Earlier this year, I just got tired of dealing with the diet. And it did not really hit me as hard as it had in the past. In fact, it was only when I was at the doctor for another reason that I was describing feeling crummy (but not poisoned) and having stomach cramps etc., and it dawned on me (duh!) that it was the old wheat thing. the doctor, new doc in a new town was very astute and aware of celiac symptoms, etc. she mentioned this to me and I told her I was not celiac as I had been tested for it a couple of years earlier. Of course I had no idea what tests were done, and despite my repeated requests the previous medical clinic never sent out my records to the new doc. New blood tests have been "borderline" and in anticipation of the biopsy, I've been indulging on bagels - toasted with butter - and other non-gluten free goodies to my heart's content, with jsut mild gastric upset, and nothing like it was before. That really confuses me. So I wonder if the severity of the response is iwth the degree to which one adheres to the gluten-free diet... ie, a lapse after stricter adherence has more severe consequences and a lapse after loose adherence has less severe consequences. Since I never thought I needed to be gluten free, I have never adhered to the Gluten-free diet, other than restricting wheat products, and those are everywhere. now this was long winded but I am so uncertain about what is going on that I hoped some of you have had similar experiences and can comment. Thanks, Susan


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Susan:

Everyone reacts differently and you will not get the same personal experience from others.

I have , with great attempts, to be totally gluten free for well over a year.. I do know how difficult it is to be 100%, so there have been issues along the way.

I do know, for me, that the longer I go being gluten free, I do not react immediately (other do). I believe that it is the healing that I have achieved, and I do not show symptoms. But, that does not mean that I am creating damage. For me, it has to build up a bit for the symptoms to be very noticeable. When I ingest, gluten, I have a very dry mouth and have trouble choosing the correct words...that's a dead give-a-way for me.

You will not have a-cross-the-board answer to your question. You just have to know your own system to get you answers.

I hope that this has been helpful and I answered your question

miles2go Contributor
I wanted to add a response to "Pinned/Pinner?z" but did not reply right. So I'm just going to ask questions here.. I too have been wondering about things like this term glutening? For quite some time I was sure I was sensitive to wheat, but that I was not celiac because of the negative test I had originally. So I, for at least two years religiously avoided wheat, not realizing that spelt, and other "wheat free" things that were glutinous were also bad. If I cheated on this diet I would feel poisoned, and have diarrhea. I don't recall becoming nauseous. My stomach would tighten up into knots, and then bloat, and it was terribly uncomfortable, to say the least. I had been having this kind of thing since I was a kid, however, and I think I just got used to having stomach aches. My mom always said it was "nerves." Earlier this year, I just got tired of dealing with the diet. And it did not really hit me as hard as it had in the past. In fact, it was only when I was at the doctor for another reason that I was describing feeling crummy (but not poisoned) and having stomach cramps etc., and it dawned on me (duh!) that it was the old wheat thing. the doctor, new doc in a new town was very astute and aware of celiac symptoms, etc. she mentioned this to me and I told her I was not celiac as I had been tested for it a couple of years earlier. Of course I had no idea what tests were done, and despite my repeated requests the previous medical clinic never sent out my records to the new doc. New blood tests have been "borderline" and in anticipation of the biopsy, I've been indulging on bagels - toasted with butter - and other non-gluten free goodies to my heart's content, with jsut mild gastric upset, and nothing like it was before. That really confuses me. So I wonder if the severity of the response is iwth the degree to which one adheres to the gluten-free diet... ie, a lapse after stricter adherence has more severe consequences and a lapse after loose adherence has less severe consequences. Since I never thought I needed to be gluten free, I have never adhered to the Gluten-free diet, other than restricting wheat products, and those are everywhere. now this was long winded but I am so uncertain about what is going on that I hoped some of you have had similar experiences and can comment. Thanks, Susan

Yes, yes, yes! And welcome, glad you found this wonderful place. I've never had a confirmed dx, only a high degree of atopy with wheat being a very big culprit and no endoscopy because I'd been so wheat-light for many years. I didn't know what to do with that so was wheat-free, but not gluten-free for a number of months. Since the beginning of 2006, I've followed a gluten-free diet and can say with much surety that the longer you go without gluten, the more pronounced your reactions will be in situations of accidental glutenings. It also takes some time for your gut to heal, so just because you don't feel better after the honeymoon period when you stop gluten all-together, your body will tell you when you're doing something wrong. It seems that we're all so programmed to go to the doctor when things go wrong and not all of them are as astute as yours.

What worked for me, and sure, I could get Enterolab testing when I rustle up the cash :ph34r: was trying the diet for a time. I don't think I need any more testing. Go buy Bette Hagman's "The Gluten-Free Gourmet Bakes Bread", if you're up for it and try the Touch o' Bean Bread, you'll never miss whole-wheat again, or better yet, try one of her sourdough recipes.

It is quite the blustery night here in Maine!

Margaret, searching, still searching for the raspberry doughnut recipe...

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.