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

What Do You Do When You Know A Reaction Is Coming?


Katrala

Recommended Posts

Katrala Contributor

I'm a math/science teacher. I teach two different groups of kids - one in the morning and one in the afternoon.

I was at recess yesterday and saw my 2nd class (which I hadn't had yet that day and included my son) headed to recess from some kind of outdoor project. Turns out it was making their own Play-Doh to use in a map of Egypt. And, of course, they were all covered in wheat flour. And, of course, it was 10 minutes before lunch.

I knew a child in that class had issues with gluten so my focus was immediately him/her. I made him/her wash up, trying to see where any traces were before he/she ate lunch. I cleaned myself up as well, but couldn't be 100% sure I had gotten everything.

Later I had kids coming to me for help with math and I saw on their hands white splotches of dried flour. My own child had flour on his shirt.

Sure enough, I was feeling it by mid-afternoon and I had one foot tingling (a new symptom, but has happened before) and I could feel the cloud descending over my brain and vision.

I just now (more than 24 hours later) ate dinner on a completely empty stomach (and I do mean COMPLETELY empty - no way anything is left.)

Last night I was afraid of a reaction and tried to drink extra water to avoid any attempts of dehydration just in case. But other than that I didn't know what to do.

If you are pretty sure you've been glutened - do you do anything in advance to combat it?


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

I tried some charcoal tablets from Walgreens the other day. Don't know if it was that or the homemade chicken soup but I recovered within 24 hours. I must admit it was a bit of a shock to feel sick (suspected cc) since stomach issues haven't been my thing but hey - things change.

I felt a little panicky and that went away, too. My dh "warning spot" rose up a bit, went down within 24 hours also.

Jenniferxgfx Contributor

That must have been like watching a car crash in slow motion-- a glutening was inevitable!

My right hand tingles when ive been glutened! It used to just be a twinge, but now it's all out numbness. (I wish I knew what was going on. Does anyone know?) as soon as that starts, I pop a pepto, and drain a bottle of water, and repeat in an hour. It seems to help a little tiny bit.

AVR1962 Collaborator

Activated charocoal and I do not even wait anymore to see if I am going to have a reaction. If I question something, like in your situation, I will take 6 tablets, each have 280 mg of charcoal. The bottle says 2 but I take 6, and it works wonders!

Katrala Contributor

I've never heard of charcoal tablets outside of ODing (and usually referencing drugs, etc.)

So it should absorb what I've just eaten?

AVR1962 Collaborator

I've never heard of charcoal tablets outside of ODing (and usually referencing drugs, etc.)

So it should absorb what I've just eaten?

The label says it is an internal cleaner not to be used in the case of poisoning and that combined with meds it can lessen the effectiveness of medications. Basically what it does is it absorbs and then it carries what it absorbs out of the body. It isn't able to just attack the gluten (unfortunately), it takes everything so I only use it when I have to as I am trying to keep the nutrients in my body. I am normally dizzy 3+ weeks after glutening,a slow progression of getting better, and by taking 6 tabs it will take me back to week 2or 3 in the process. Not an absolute answer but it does help alot. I still have to take my gasX but at least it seems to speed up the recovery.

Michele Renee Newbie

In March of this year I started getting real sick, headaches, sick to my stomach, tired, and I bloated up like I was 6-8 months pregnant. My back always killed me due to the bloating..I started going to the Doctor, we tried alot of different things, always in the ER and they all said I was constipated they had me taking so many things..It was unbelieveable..So someone said something about glutens..I started reading it and doing alot of research, I still have alot to learn but when I follow the diet NO GLUTENS at all. I feel great..I am close to losing my job because of this illness..I don't go out to resturaunts, familie's for dinner anymore..I eat at home, for work I take my homemade food..I was getting into the glutens at work, and I think its cause they totally didn't understand how important it was that I DONT get any..I got sick twice at work so now I stick to my own cooking.


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



Celiac.com Sponsor (A8-M):



YoloGx Rookie

I am finding that taking extra nattokinase, L-glutamine, probiotics, and now also some homeopathics really helps stop my otherwise inevitable migraine and sinus congestion after cross contamination with trace gluten. The homeopathic belladonna has helped, as has pulsatilla. Recently I got a formula by Hyland just for headaches in general, and it worked well. There are supposed to be homeopathic remedies for gluten--when I discover ones that are not made with alcohol I will let you know... For those that can't handle the lactose pills, there are remedies made with glycerin out there. I still need to look them up.

Meanwhile, I am making the commitment to constantly wash my hands and not to put my fingers to my face etc. It really helps!

And of course the water cure is good, as is getting as much exercise as possible when I feel up to it... And making green veggie smoothies with plenty of parsley and celery and (for me given my salicylate problems) iceburg lettuce.

In the old days I made dandelion root tea. Helps with the detoxing process quite a lot...

Bea

areyoufreakingceliac? Newbie

I take a couple Acidophilus capsules and tonnes of water! I have started taking it before eating out now just as a precaution. The charcoal is interesting though, might have to give it a try.

ArtistinChina Newbie

I know charcoal is cleaning but I can't find any in China yet. When I feel a reaction is coming, I get these signs: skin reaction, energy break down, belly aches. Then I lay down for as long as I need, drink warm water and eat nothing up until I feel I can swallow something. It is hard because I must reduce a lot my activities at the moment because I have recently find out about these problems. Before, I was just taking pills against rash, I was beating up myself to work no matter circomstances and feelings and I wash drinking lots of Perrier, thinking it was helpful for digestive problems.

I am right now giving a try with some chinese medecine although I know a balanced diet is the real key to problem. But then what happens with family's and friend's dinners? That thing is too new for me to know what ingredients are 'testing' negative ad positive in my body. It seems like I have identified a whole list in the last 2 months, but not all.

So yes, I hope I can find some charcoal to prevent any reaction to happen again.

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 GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

    2. - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

    3. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    4. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

    5. - Scott Adams replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

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

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lalan45
    Newest Member
    lalan45
    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
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.
×
×
  • 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.