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

Argh


Leper Messiah

Recommended Posts

Leper Messiah Apprentice

Oh man, I must have the most sensitive reaction to gluten ever.

I went to work today in a positive frame of mind, it's been two weeks since my last glutenning so this is when improvements start, and continue dramatically over the following week. So of course I was anticipating this and walking to work with a :).

It was a cold day so wrapped up and walked to work, however I got tap nose en route and it started streaming down my lip to my mouth. I'm understandably sensitive to things touching my mouth in anycase but unfortunately I didn't have a plastic pack of tissues to hand so I thought I'll gently wipe it with my sleeve.

I did think at the time, 'will I be safe?' but thought I was being too OCD about it. Of course when I took a gulp of water at work, bang....glutenned. Should have went to the toilet and rinsed my mouth out, stupid.

This is exactly 2 weeks since my last gluttening - which I thought at the time was the most ridiculous, I touched a banana before eating at work where tons of folk eat sandwiches at their desks so there's probably gluten all over the desks/files/everywhere.

Residual gluten, like peanuts, I guess is everywhere but it's so difficult mentally this disease, you think you're on top only for it to kick you in the nuts in a whole new way.

I mean that's 6 weeks of my life taken away by two ridiculously minor infractions. This would be draconian as a federal/criminal punishment!!

And of course I organised a poker night for this Saturday on the basis that I would be a bit better....sods law!


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

I'm sorry, but it's hard to believe you got glutened simply wiping your nose on your sleeve or a gulp of water at work.

And any new folks, this simply in NOT something your average person with celiac has to worry about.

richard

Booghead Contributor

I'd say that did not happen because of gluten. Something else maybe. ;)

dilettantesteph Collaborator

I am extremely sensitive but I must admit that I don't understand how you got glutened either. What is tap nose? Is there something about it which would gluten you if it touched your lip? Is there a reason why your sleeve would have gluten on it? Is there something wrong with the water at work?

I am so sorry that you are feeling sick. It is so hard to deal with each setback.

Leper Messiah Apprentice

No it wasn't the water per se, it was the fact there was likely to be gluten on my sleeve which was then transferred onto my mouth and then swallowed by drinking the water. I stopped cleaning so hard at home, and instead rely on plastic plates, cups, disposable everything basically as I tried the cleaning route but I was getting glutenned on average twice a week and I could spend 1-2 hours a day cleaning and still get glutenned. No idea how it got on my coat but my flatmate eats a lot of gluten so it's not a big surprise.

Thanks Steph, trying to be positive and now looking forward to a couple of weeks on when I should be there again. Time to batten the hatches.

Richard - whilst I appreciate your feedback, I'm literally on the floor with tiredness today so whilst it may be hard to believe, it happened. I wish I knew exactly how it happened, i.e. seen the trace gluten or whatever but the last 6 months I've been glutenned by things I cannot physically trace. Just be glad you aren't this sensitive!

I also want to know why my reaction to gluten is so different and a lot more sensitive than others. It's bad enough avoiding gluten but this is so difficult, especially when I get so close as well. Makes me think, is this sustainable over the long term...I mean I literally have to watch anything that touches my mouth, and that doesn't appear to be the case with most folks who have to avoid gluten.

beebs Enthusiast

If you are that sensitive then maybe you should make your home gluten free??? Others in your house won't die for not eating gluten while they are around you and then they can just eat it when they are out?? Is that an option for you?

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. - trents replied to Charlie1946's topic in Related Issues & Disorders
      5

      Severe severe mouth pain

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      40

      My journey is it gluten or fiber?

    3. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      5

      Severe severe mouth pain

    4. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      5

      Severe severe mouth pain

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      40

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,900
    • Most Online (within 30 mins)
      7,748

    sai4a
    Newest Member
    sai4a
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      @Charlie1946, celiac disease damages the lining of the small bowel which is the part of the intestinal track where all our nutrition is absorbed. Celiac disease, therefore, often results in nutritional deficiency related health issues. In addition, you describe a diet that sounds largely devoid of fruits and vegetables and dairy (for calcium). This does not bode well for good oral health or good health in general.  It can take two years or more for good healing of the lining of the small bowel after adopting a consistently gluten free diet. In the meantime, adding in good quality supplements can help compensate for poor nutritional absorption efficiency. Common over the counter vitamins and supplements are often optimized for shelf life rather than good assimilation/utilization by the body. We commonly recommend that those struggling with nutritional deficiencies start taking high potency B-complex, 5-10,000 IU of E daily, D3, Zinc and magnesium glycinate. They need to be checked to make sure they are gluten free since wheat starch can be used as a filler in pills and vitamins. Costco Kirkland Signature and Nature Made brands are often good choices. What is causing your swallowing problems? Is it the thrush?
    • knitty kitty
      The Benfotiamine and thiamax need magnesium to make life sustaining enzymes.  Yes, go ahead and take the Benfotiamine and Thiamax now and include the magnesium as soon as possible.   Yes, take the magnesium at breakfast, too.   I take my Benfotiamine and TTFD Thiamax and B Complex  at the beginning of breakfast.  I take the magnesium after I finish eating breakfast.  Yes, I take NeuroMag.  
    • Charlie1946
      @knitty kitty thank you for replying so quickly! I have not done well at all taking vitamins or supplements, I have such a hard time swallowing even small pills, so I have resorted to crushing them and taking them with Gatorade.  Pretty much I eat baked chicken tenders, Fairlife chocolate protein shakes, gluten free crackers. Thank you so much for the advice, I will try it all for sure, because everything I have tried OTC has done nothing 
    • Charlie1946
      Hi, thank you for the quick reply! I was diagnosed about 5 years ago I think,  I try to be extremely careful with what I eat so I don't get cross contamination. I used to get little sores in my mouth when I was little, usually from sucking on hard candy, but L-lisene would clear it right up. I got that Nasal Navage thing and used it twice and that's when I thought I had a sinus infection. So I got a z pack. Then I noticed my tongue was coated and it was white except right down the middle which was more brown and crusty, like the corners of my mouth. I also have dry mouth and I went way too long before I started treating it. So then I had some kind of huge pill and Nystatin mouthwash. My mother in law's new husband ( they live upstairs) started complaining of exactly the same symptoms as me. He went to urgent care, they said it wasn't thrush, it was shingles. We both went to our dentist's for cleanings, I don't have insurance so I really couldn't tell they cleaned my teeth at all. But she said my mouth looked good, all cleared up. I had a day and a half of no pain and then it came right back. So I got more pills and miracle mouthwash. There are times it feels like dry socket and times it feels like it's bleeding but it's not. I don't see any gum or facial swelling, I did see a couple of tiny ulcers on my bottom lip, roof of my mouth is still sore, and my tongue and cheeks are still a little coated. I am just at a loss. My mother in law's husband, they  took swabs and called back a week later and said it was a new herpes variant virus that is going around but not contagious. He was cured after a week! And I'm going on 3 months 😭
    • xxnonamexx
      The thiamax and benfo I ordered should come tomorrow. I will start Friday ny b complex the benfo and thiamax for breakfast. I haven't ordered magnesium yet. I wanted to start with this first then add magnesium. Should it be fine to take b complex the thia/benfo and eventually magnesium at breakfast together? Thanks
×
×
  • 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.