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

Panic Time After A Long Time Of Not Hanging Around Here.


chasbari

Recommended Posts

chasbari Apprentice

I can't believe I managed to stay away from here for so long. You all got me through some of my darkest hours in the early days of my recovery. Things have been going so well. I have been on a steady road to recovery for many years now with very little in the way of complications. When I saw my Gastro last year it amounted to "You are looking great, keep on doing what you are doing and unless something changes I will see you in another year." Hard to imagine it reached that point. Back to heavy workouts and exercise machine building, subbing on a regular basis and not freaking out in classrooms full of gluttonly sweaty careless middle and high schoolers. Educating them every chance I can and helping a few otherwise silent celiac sufferers as a result. So gratifying when I have them come up to me after I have shared my health journey and they have all sorts of great questions. Given the opportunity and good information kids can make good decisions but they live in such a toxic environment that is hampered by educators who are shamefully using the most unhealthy foods as rewards. Ah, but I am drifting way off topic.

Monday night I was eating some food I thought was from a trusted gluten free source. I eat very little processes food anymore and usually stick to organic, locally sourced and ethically raised antibiotic hormone free. So, I thought my little indulgence of all beef hot dogs from Applegate (normally trustworthy in the past) tasted off. Since it is the only processed food I have eaten I feel safe in finally implicating but Mods please feel free to pull out the name if you feel it unfair to them. I have now used more TP in the last 96 hours than I typically use in 6 months (yes, I have been calculating!)  cannot eat anything of substance without it going straight through and even though I am not eating have bouts of watery D every 45 minutes or so. I bloomed full out with a rash all over my chest, back and thighs down to my knees and have been extremely weak. I wanted to think it was flu or some other malady but the way all my mucosal linings are feeling I am pretty sure it is a result of gluten exposure. I have checked out everything in my environment to see if it might be from something other than food. CC or something. My family is really very careful about that issue and we can't find anything. They are miserable to see me this miserable. Things are starting to settle a bit today. I can't get in to my Gastro until Monday but have had several times when I almost made it past two hours without needing to run to the bathroom. Such a severe change from the last several years. Any food I try to eat gets on the rapid transit so I know my lining of my GI tract is very unhappy presently. At first I thought I might have picked up some sort of bug and threw off my gut flora but as the days wear on I am pretty sure it is a glutenning. So rare for me that I just can't say for sure. I can't take in more than a few sips of water here and there for the time being. Any observations or survival tips appreciated.. or just tell me to grow up and get a real job or something like that. 


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

If the hot dogs (that say they are gluten-free??) tasted off, perhaps they were? Was the date ok? Had they been stored at the wrong temp at the store, etc.? Did anyone else get sick?

Sorry you're sick, it's truly awful to be that ill.

Probiotics, digestive enzymes when/if you eat, and your favorite safe foods and liqiids...that's my advice.

If its food poisoning they say to let it out - no anti diarrhea meds.

Salax Contributor

I eat their hot dogs quite often, never had an issue. My concern with their dogs is that they say "best within 4 days of opening" doesn't mean they expired per say but maybe your GI tract is so sensitive it had a reaction to that OR just the fact you put something in your tummy that might have been to "rich" for your system since you normally stay away from processed foods.

 

Hope you feel better B)

ravenwoodglass Mentor

Call your GP or head to the ER if this continues. It sounds like you may have salmonella or another food poisoning. Your GP can do a stool test to know for sure. Your symptoms, including the rash sound just like my bout with salmonella a few years back. Some folks only get a minor effect from food poisoning but others can become seriously ill. Make sure you stay hydrated, if you can. If you can't then head to the ER.

frieze Community Regular

if you have a walk In clinic you could try that , otherwise hit the ED.  Dehydration can be deadly , no matter the cause.  and report back! lol

chasbari Apprentice

well, for the first time in the last five days I actually slept for more than 45 minutes last night. Made it a little over four. The rash is something I have had in relation to Epstein Barr virus that has plagued me for more than twenty five years. When something pushes me over the edge I will end up with this bloom. I am wondering if something shut down at the cellular level with my energy metabolism. I have been exceedingly weak to the point where I suspect intestinal transit time was a result of things just sliding right on through. I know most would say you need peristaltic action in order for there to be transit time, fast or slow, but to me it felt as if there was no muscular activity save for an occasional severe cramp. I am weak and tired but am now tolerating drinking water without it going straight through and am on my second mini meal of the day. It takes me forever to eat, though as it is tiring me out. To go from having to run to the bathroom every half hour to forty five minutes to now going on six hours is a major relief. Energy has always been a problem for me. I still have a mouthful of mercury amalgams. I know some people tolerate them with no problem but a key to my initial healing a few years ago was when I included a heavy metal detox on a daily basis. I have not been able to do any of this in the last week so I wonder if that is contributing to things. I had five of my largest amalgams removed when I had my root canal teeth taken out a few years ago and the results were pretty startling. My hearing immediately improved and my tinnitus all but disappeared. But, I still have 11 substantial fillings remaining in addition to two porcelain over nickle crowns that are not a good combination. I could run a small radio off my teeth if I were stuck on Gilligan's Island. Anyway, it appears that the worst is over and I will be seeing my Gastro on Monday for whatever followup he deems necessary. Until then it will be lots of napping. Thanks for theconcern and suggestions. The avoiding Anti-diahrreals was, I think, a good suggestion. I was contemplating going that route and am not sure it would have been wise since I am not 100% sure as to the source of this.

chasbari Apprentice

Saw my gastro on Monday. He discounted the probability of food poisoning and is convinced it was a reaction to gluten exposure. He said what I was describing to him was this immune cascade and that I am just extremely sensitive to gluten. That I have had so few exposures in the last five years is a tribute to the support I have gotten from my family (who is not gluten free.. rather.. "gluten lite") and the fact that I have been very cautious  Thing is, right now, I just feel like withdrawing from the world. It took me several years to venture out into social settings at first and, in a way, I feel like I am mentally back to square one with that. I suppose it could be my body's proctective mechanism saying that it's too early to risk re-exposure in light of the most recent episode. Things are not back to normal but are also not near as bad as they were several days ago. Small steps.


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



Celiac.com Sponsor (A8-M):



Gemini Experienced

I'm sorry you are feeling so bad and hope things get better really soon.  I agree with Salax, though, on the Applegate hot dogs.  In fact, I had one last night for dinner on a Udi's roll and have never reacted to them and I am about as sensitive a Celiac as they come.  I take great care to not be glutened and it's a rare occasion when I am so if there were any gluten in the hot dogs, I wouldn't be eating them because I get violently ill.  You do have to be careful because they do not last as long as most hot dogs out there.  So, if they tasted a little off, then it could still be a bacteria problem.  A doctor won't know that unless he tests you.  You could have also picked up a bug and then ate a hot dog...which is pretty fatty to begin with.  Lots of reasons for feeling as badly as you do.

 

Don't despair....you will recover!  :)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,025
    • Most Online (within 30 mins)
      7,748

    Amari Love
    Newest Member
    Amari Love
    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
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.