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

Higher Sensitivity?


CMCM

Recommended Posts

CMCM Rising Star

I thought I asked this before, but couldn't find it anywhere so perhaps not.

So I've had intermittent digestive problems for at least 20 years, and had tentatively decided at the very least I had a problem with dairy, so I ate it in tiny amounts and not every day. I didn't think of gluten because I wasn't underweight; in fact, I was 20 lbs, too heavy and no matter what I did I couldn't lose it. I'm not totally sure, but I'm thinking my own "trigger" might have been a surgical procedure I had 6 years ago for uncontrolled bleeding....I lost so much blood I got horribly anemic, could barely walk and nearly had to have transfusions it was so bad. I had general anesthesia with a D&C to correct the situation, which it did. However, the whole thing was somewhat of a trauma and it took me several weeks to feel better and get the iron levels back up to normal. In retrospect, I think my digestive woes have been getting progressively worse since then.

Before Thanksgiving I had a frightening dizziness/nausea episode that came out of nowhere and lasted for about 5 hours, then I felt kind of yucky the next day, and was OK the day after that. I got suspicious when I realized my diet for the 10 hours prior to the dizzy spell had been megadoses of wheat foods. I found this site, got really suspicious, and as a result, went gluten-free the day after Thanksgiving. I felt great within a couple of days. The bloat disappeared, my asthma-like symptoms and chronic cough totally disappeared for the first time in nearly a year or more, I just felt great. Fast forward to Christmas, I did a bit of isolated binging. Sugar cookies 2 days before Christmas (no huge reaction), good on Xmas except for a few pieces of Cheesecake, which had a graham crust, and than a few days ago, a couple of sugar cookies and a chunk of spice bread. KA-BOOM....major pain and burning now from eating virtually anything. I don't know what to eat at this point. I'm starving hungry, but afraid to eat anything.

After being gluten-free, do gluten exposures create a worse reaction than when I was eating it all the time? This hardly makes sense, but it sure seems to be what is happening. :(


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



Celiac.com Sponsor (A8-M):



num1habsfan Rising Star
After being gluten-free, do gluten exposures create a worse reaction than when I was eating it all the time? This hardly makes sense, but it sure seems to be what is happening. :(

It did for me. Even though I was really, really, really sick for almost 2 months before starting going gluten-free, since then anytime I've cheated the pains are worse, regardless of how little or much gluten exposure I have.

Maybe someone else can explain it better than me.

~lisa~

drewsant Rookie

I think most people will tell you this is common to have a stronger reaction after you've been off of it. My doctor told me even the foods I'm allergic to will make me extremely sick after I stop eating them because your body gets used to constantly having that allergen, so it has a certain tolerance, but when you eliminate the allergen, then say a few months later eat it again, your body will have a much stronger response to it. So yes, symptoms do get worse after you've been away from the food for a while, then try to eat it again.

jerseyangel Proficient
So I've had intermittent digestive problems for at least 20 years, and had tentatively decided at the very least I had a problem with dairy, so I ate it in tiny amounts and not every day. I didn't think of gluten because I wasn't underweight; in fact, I was 20 lbs, too heavy and no matter what I did I couldn't lose it. I'm not totally sure, but I'm thinking my own "trigger" might have been a surgical procedure I had 6 years ago for uncontrolled bleeding....I lost so much blood I got horribly anemic, could barely walk and nearly had to have transfusions it was so bad. I had general anesthesia with a D&C to correct the situation, which it did. However, the whole thing was somewhat of a trauma and it took me several weeks to feel better and get the iron levels back up to normal. In retrospect, I think my digestive woes have been getting progressively worse since then.

Wow--I could have written this part of your post :o . The only difference is that I had my procedure done in 2004. It was after this that my Celiac came on full force. I just wrote about this in another thread, but in my case , the reactions I get from gluten now do seem worse than they were before. Its a little hard to compare, though, because before DX, I was sick all the time--it was more a matter of how sick on any given day. Now that I feel well most days, if I get any gluten, the reaction is more clear cut and seems more powerful. How is your anemia now? Before DX, my red blood ct. was 8, after 6 months gluten-free, its now 14.5! Its nice to have color in my face and not bruse from resting my arm on a table.

glutenboy Newbie
It did for me. Even though I was really, really, really sick for almost 2 months before starting going gluten-free, since then anytime I've cheated the pains are worse, regardless of how little or much gluten exposure I have.

I'll agree with this too. Even just being mostly gluten free for about 3 months, now every time I get any gluten (like malt vinegar in salad dressing), the results are pretty horrific.

CMCM Rising Star
Wow--I could have written this part of your post :o . The only difference is that I had my procedure done in 2004. It was after this that my Celiac came on full force. I just wrote about this in another thread, but in my case , the reactions I get from gluten now do seem worse than they were before. Its a little hard to compare, though, because before DX, I was sick all the time--it was more a matter of how sick on any given day. Now that I feel well most days, if I get any gluten, the reaction is more clear cut and seems more powerful. How is your anemia now? Before DX, my red blood ct. was 8, after 6 months gluten-free, its now 14.5! Its nice to have color in my face and not bruse from resting my arm on a table.

You know, I haven't been tested for anemia in years. But I really bruise easily, so given the connection that seems to exist between anemia and celiac disease, I probably sholuld get tested! I never thought of it.....I improved after the surgery by taking iron pills for a couple of months, and I stopped looking like a ghost fairly quickly, so it never occurred to me.

jerseyangel Proficient

CMCM--After my surgery, I was also on iron suppliments that I had started before the procedure. When I stopped them and just took a multi. with iron, I started to have the symptoms of anemia again. That is also when my Celiac kicked in, like I said before, and it leads me to believe that the Celiac was the main cause of the anemia and the monthly blood loss was a contributing factor. This opinion is shared by my GI Dr. who told me that we'll never really know either way. My suggestion would be for you to persue the gluten-free diet and try it 100% for a month. Go back to the basics--meats, fish, veggies, fruits, olive oil, nuts--to help you feel better and see how you feel then. Getting you blood levels checked would be a good idea, too. The gluten-free diet got rid of my anemia--the suppliments were only treating the symptoms.


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



Celiac.com Sponsor (A8-M):



num1habsfan Rising Star
You know, I haven't been tested for anemia in years. But I really bruise easily, so given the connection that seems to exist between anemia and celiac disease, I probably sholuld get tested! I never thought of it.....I improved after the surgery by taking iron pills for a couple of months, and I stopped looking like a ghost fairly quickly, so it never occurred to me.

I get check for anemia every 2 months (or I did for a year, anyways). I have all the symptoms of it, but dont have it. When I go to a doctors appointment tomorrow I'll make sure I get a new form for the bloodwork again. It never hurts to be tested for that, thats for sure.

~lisa~

julie5914 Contributor

I has been my experience that the reactions are stronger now with accidents. No more bingeing! That is SO bad for you! I was anemic before going gluten-free (hemoglobin 10/hemotocrit 30)- I just got my CBC last week and my hemoglobin was 13 and my hemotocrit was 41! That's higher than ever! Yay! In addition, my ferritin was within range, which brought up the distribution numbers and made it so there wasn't one flag on the whole CBC! One day I will get my celiac panel to look like that.

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
      132,218
    • Most Online (within 30 mins)
      7,748

    tiffhorn14
    Newest Member
    tiffhorn14
    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.