13 years later…mistakes still happen

This weekend I did everything right.  Well…almost everything.  I still have a huge stack of papers to finish grading – but hey – that’s the life of a teacher.  I’m talking more about following the gluten free life.  Heck, I’ve been doing it for so long it’s just natural.

On Sunday, after a busy day, we decided to order pizza for dinner.  The neighborhood restaurant serves a great gluten free pizza.  They used to make it out of bean flour and it was pasty (so NOT tasty, IMHO).  Now they have one they craft out of rice and it is tasty and even crisps up (if you ask them to bake it longer).  I’ve eaten their pizza a few times over the last couple years and I’ve never had a problem.   Ever.

I even decided to try new toppings. I verified that all the toppings were gluten free – they are very well versed – etc.  I ordered the pizzas (one gluten free, one regular for the girls/hubby).  I even double checked with the cooks when I got there to pick up the pizzas that everything (my new toppings) was gluten free.  I was assured that indeed it was.  And the thing is…. I don’t doubt them.

However, on Sunday night – several hours after dinner – the most excruciating abdominal pain told me that even though I had the gluten free pizza…..had asked all the questions…. etc that something had gone seriously wrong.  The pain is unbearable.  The hot flashes, nausea, bloating (like seriously, please….put a pin in me and pop me already), the inability to find a comfortable position, etc is all overwhelming.

Something happened.  I must have made a mistake somewhere.  It could be as simple as helping kids cut their pizza and put it on their plate and then forgetting to wash my hands (for the umpteenth time while feeding them).  It could have been a kiss from a kidlet with a crumby set of lips.  I honestly don’t recall this as this issue – but I still can’t figure out where this came from.

On Monday I stayed home from work.  Unable to really stand up straight or move too far from the bathroom, I spent my morning trying to figure out how I had gotten here:  back to the most painful place possible with gluten ingestion.   I still can’t figure it out.

So what do you do if you are hit with the debilitating pain?

There are only two things that have ever helped relieve any kind of pain or discomfort for me in the past to some degree.

1.  Cool washcloth on the back of my neck.  (Heat makes me more uncomfortable – although some people report relief when applying warm compresses to their stomach/abdomen.)

2.  Papaya enzymes/tablets.  I have no idea why this has helped in the past, but it has.  I chew up a dozen of these tablets (PLEASE be sure to buy the gluten free ones!) when I’ve been concerned or had a hint that something is awry.

But this pain?  The one I’ve had since Sunday night?  Nothing.  Nothing is stopping it.  It comes and goes in waves.  I returned to work yesterday and just didn’t eat much other than mashed potatoes or simple/easily digested foods.  And then last night?  It started all over again.  The pain was so severe, I was vomiting.

The brain fog has left me a mess too.  I have left doors open (to my car…in the garage….nice).  I pulled some things out of a cupboard to get the crock pot…and left them on the floor.  Completely forgetting to put them back until I turned back around and almost stepped on them.  I have misplaced my keys … my water bottle… and even walked over to a car that was not mine and couldn’t figure out why the doors were not “beeping” to open with my keys.  My “to-do” list at school is a blur.  I tried to organize my desk yesterday as one day out meant a sub left my entire desk covered with neat piles of papers on every surface possible (!!) but I left with a large stack of papers on the floor next to my chair – too overwhelmed to even begin setting up the grade book columns and entering scores.  (Come to think of it…it’s probably a good thing I left those tests to be corrected at school.)

Not to scare you, but this is the face of a body rebelling from  accidental tiny amount of gluten ingestion.

gluten poison

Those huge raccoon eyes?  Not normal.

The blotchy skin?  Red patches?  Also not normal.

The puffy face?  Ditto.

Yes.  I’m hurting.

But here’s the deal:  Accidents happen.  And goodness knows no one ever wants to be back here in the land of pain and discomfort.  But there might be a time in your life that you slide back kicking and screaming into that day when you suffered before diagnosis.  So here’s the question:  what do you do?

What stops the pain for you?

Here are the tidbits offered up over the years from numerous sources.  Maybe some of them will work for you.  If I am missing some, please leave a comment.  Maybe your tip or trick will spare someone else some pain or discomfort.

  1. Maalox or Pepto Bismal (for me these are only sources for relief of the aftermath – not the pain so much)
  2. Papaya enzyme tablets
  3. Warm compresses on the tummy – or a cool washcloth on the back of your next.
  4. Ginger and honey tea.
  5. Probiotics – drinkable liquids, not just in yogurt.
  6. Ibuprofen
  7. Eat candied ginger.  (My mother in law sends me Chinese candied ginger – it’s awesome for tummy troubles)
  8. Peppermint tea or peppermint water.
  9. lots and lots of cold water
  10. <insert your idea here>

Obviously, the best solution is ZERO exposure/ingestion to gluten.  That’s the way I prefer to go too.  But stuff happens.

I’m not big on putting more things into my body when it hurts.  So while I have tried the papaya enzymes and the probiotic drink, when I hurt like this, I honestly cannot imagine putting MORE food into my mouth – let alone my stomach!  Am I alone in this?

I’ve missed blogging.  I will come back shortly with a more upbeat post soon.  But for now, I’m off to figure my way out of this brain fog and pain nightmare.  I’m giving myself a week.  (At least that’s how long my hubby says these symptoms have lasted for me in the past. LOL)

-May every morsel that touches your lips be tasty and gluten free - 
-Kate

 

28 comments on “13 years later…mistakes still happen
  1. stevez says:

    Sorry to hear you are still on the mend. Could it be something besides gluten that got you all messed up? :-(

    • kchan says:

      I hope not! I did wonder too – but since these symptoms are all too familiar from days gone, I’m afraid this is gluten. =(
      PS – Love the gravatar! :D

      • merannicuill says:

        I use bentonite clay in water. About half and half, 1/4c of water. It coats and helps to neutralize (I think ‘coat’) the gluten. It definitely coats the intestines.
        and it’s not food. I like on-the-edge of cold water which seems to soothe my tummy.
        ANd I don’t eat at anyone else’s house unless they’re totally committed to GF (even my dogs are GF).. even then, people have not been as clean as they intend.

        they forget that the mixer was used in pre-GF days. There’s the toaster, cooking pans and baking pans with coatings that prob still have gluten in it.

        I apologize for being paranoid, but just am not willing to give a lesson in “this is what happens when I get glutened, even when you’re well-intentioned and care a lot”.

        Finely powdered slippery elm powder (“FINE”) works also very well, helps healing occur quicker.

        So sorry you had to go through this!

  2. Heather C says:

    Oh Kate sorry to hear!
    Hope it does not last a whole week!
    Ibuprofen is a good anti-inflammatory … have you tried taking something else that is more just for pain? like Tylenol. You can take it along with the ibuprofen (they are doing different things in the body)

    • kchan says:

      I have been concerned about adding more to manage to my stomach. But since I’ve been able to keep down some congee (rice porridge) with garlic this morning, I’m off to try exactly that. :D

      • I know this feeling too well! I like the baby’s non-alcoholic (right?! it’s for babies!) Kolik brand gripe water…it helps me advance toward feeling human again after a gluten-induced disaster. Also, blueberry smoothies are friendly, yogurt if you tolerate dairy, cran or other juice if you can’t…I know this was posted long ago-but we know, it can happen again:( I have a list of anti-inflammatory foods on my blog if you want to see that too:)

  3. Dawn Blum says:

    I feel for you.. I know how much these hurt! What seems to lessen my attacks is charcoal tablets (2 of them)with a glass of ginger ale (only canada dry seems to work) then 30 mins later I take a levsin (prescription). And eat yogurt for my next meal (probiotics seem to cause problems for me but this works). This method takes my symptoms from a week on average to maybe 2 day. Sometimes the brain fog lasts for another day. But, I agree best idea, skip the gluten.

    • kchan says:

      Thanks for the tips, Dawn.
      I think I am going to contact a local GI to see what they recommend too. It’s been a LONG LONG time since I’ve had something this severe. Surely there are new ideas out there to help, right? right?? :D

      • The longer I have been gluten free, the stronger my reactions to it have been. It is like I used to have a tolerance or resistance to it, even though I was allergic. Now, it’s terrible.

  4. TakeOne says:

    Kate, So sad to read this and know you are sick. despite being early October, the FLU is already out there and mimics some of these same terrible symptoms. It could be the maker of the GF pizza was coming down with it when they made your ‘za. Get well FAST :) LU!

  5. scranda1 says:

    I’m afraid I haven’t any idea to help you. Reaction hits me in about twenty minutes and I usually spend the next seven or eight hours mostly in the bathroom with severe diarrhoea, fainting, shaking and pain. A warm compress cheers me up, though I don’t think it helps at all. Once I start vomiting I know I’ve turned the corner. And finally I feel like I’ve been run over by a steam roller for the next few days. During that time I find that live yoghurt seems to help, and avoiding carbs of any sort. Hope you feel better soon.

  6. Mike Buser says:

    I have had simular experiences unfortunately!!! :(
    I am currently taking Omeprazole 40 mg (prescription strenght). For one thing it helps take off the adverse effects of injestion (mine mostly by cross contamination). I alos hit the pepto bismal chewables hard-two every couple of hours until I feel relief and continue when I feel discomfort.
    Not fun!!! Good luck and I feel for you!!!!!

  7. Tricia says:

    Tonic water helps

  8. Faye Berry says:

    Oh, so sorry that happened to you!

  9. Karen says:

    Charcoal capsules will absorb the gluten and move it out more quickly. I have some in my swim bag (I work at a pool), in my truck, and in my house. Several of my friends have some at their homes for me ‘just in case’. Good friends rock! Remember HS biology? Charcoal absorbs whatever it comes in contact with so the down side is if you took meds in the two hours before (or after) you take charcoal, it will likely be absorbed. The good news is it moves things out and cleans you up and helps you get operational. Try it. It works. I also take enzymes and lots of water.

  10. kitblu says:

    I agree with Dawn about activated charcoal. I also have a suggestion for general abdominal/ pelvic problems that I use; I have never convinced anyone else to try it.
    Ingredients: A sheet of unbleached muslin (unbleached cotton would work as well), a green garbage bag (or similar) and cold water. The muslin needs to be long enough to fully wrap around you and wide enough to cover your belly and abdomen. Plastic the same size or bigger (I cut a garbage bag along 2 long sides).
    Instructions: Soak the muslin in COLD water; wrap around belly, suck in your breath – the cold will shock you. Wrap plastic around cloth to keep the cold and the wet contained. I tuck the excess plastic under the cloth (just a little) so I don’t drip. Put on whatever other clothing you require and leave it for at least an hour.
    Explanation: I learned this technique when studying for a diploma in Massage and Hydrotherapy (hydrotherapy is treatment with water). The cold shocks the body and blood leaves the surface to protect internal organs. Because the blood concentrates, feeds and aids the organs, the organs have more power/energy to do what they do – in your case to digest and purge the gluten/bad stuff. In my class, this technique was popular for PMS. There is also a similar treatment for the whole body, which is good for detox, especially for someone trying to quit smoking.
    If you try this, please let us know how it worked. I don’t think there is a danger of a Herxheimer Reaction but I am not knowledgeable in that area.

  11. lisa says:

    My girlfriends swears by having an enema to wash the badness out when she gets glutened.

  12. First time I’ve read your blog…dear heart, get some bentonite clay. Ounces nasty, but it’s very cheap, affordable, at Whole Foods or one of those near to you. My ND told me a tablespoon… I put 1/4 cup in 1/2 cup fairly cold water (because I like colder over tepid, but tepid works too.) There’s no taste, and very little texture. It’s ground very fine. Two or three of these treatments and things are well coated inside. Of course, you have to wait till the gluten works its way out of your body thru the gut for healing to begin.

    The clay works for leaky gut, all those gut problems. Even helps the stomach.

    And it’s so much easier than the charcoal stuff.

    I’ve been gluten free since Jan 2007. It was an accidental discovery for us. Btw, dual households are HELL. My hubs and all my dogs are now GF with me. We’ve all shown positive changes because if it. I won’t tell you what to do but ;) it would be wise to put everyone on a “while home it’s GF only” diet.

    Good health and relief to you soon!

    • I hesitated to make such a recommendation but I am glad you did. I talked to a woman with a peanut allergy who informed me that she would have an allergic reaction if she kissed her lover after her lover had eaten peanuts or peanut butter. Why take a chance?!

      • merannicuill says:

        Clay works for many things… so it’s nice to have around and very cheap! It coats everything, like I said.
        I had a reaction to something (but not gluten) this last weekend. I ran out of clay (I didn’t realize the jar had so little in it) during that treatment. I felt so much better after it.

        Plan how you take it though; take any pain pills, vitamins, etc before you take the clay. Otherwise it won’t absorb properly. After all, that’s the idea ;)

  13. Tracy says:

    Chartreuse. Not only does it help when you are glutened it also alleviates menstrual cramps. Don’t know how, don’t know why, but it works. If it is really bad, like my husband was the other night, he just did a shot of it. Otherwise we mix it with seltzer water.

  14. Candi says:

    Sorry for the long-winded post, make sure to alert the pizza place about your experience – they may have made an innocent mistake or worse – someone in there is as ignorant as some people can get and went and served you a pizza with wheat in it somewhere.

    Both of my uncles have a tomato allergy, and one of them once went to a fast food joint and ordered a burger with no tomatoes or ketchup, and his burger arrived with them both inside. He returned his burger and it came back with no ketchup or tomato all right – they just scraped the ketchup off and sent it back to him!

    I wish it ended there….

    My mother in law has a gluten allergy, and has had to leave restaurants several times because they didn’t get that serving her a regular burger and having her remove the bun herself is not the same as a gluten free burger.

    I have a niece with a peanut allergy, and her mom has had full blown arguments with other moms who have insisted on trying to serve her daughter peanut foods because they insist that peanut allergies don’t exist.

    Not to mention my own numerous battles with people over me having a (relatively) mild chocolate allergy….

    Honestly, I feel people handling foods should have to take a course on allergies and allergic reaction symptoms and how to handle and allergy emergency.

  15. Ina gawne says:

    Wow…have now just read your post. So so sorry….I have soooo been there too. It is a nasty process. The last time it hit me was 4 years ago, and my symptoms were pretty much the same as yours. (at that point the worst I have ever experienced) As for the brain fog – I just had to tough it out….and believe me it was tough!
    At that time, the only thing that helped me was huge amounts of pro-biotics, organic whole yogurt, and homemade chicken stock….3 days worth, then by the 4th or 5th day…I slowly went back to normal. Brutal! What I wonder about? The longer I am gluten free, (18 years now) and god forbid, if I ever do get gluten contamination down the road…my symptoms are worse with each episode. It has not happened since, thank goodness, but I wonder what is next??? Anaphalactic shock? Pray this does not happen! How long did it take you for the brain fog to disappear? I am sure by now you are back to normal…such a nasty process to go through!

  16. Lucy says:

    I know this is really late but I’ve experienced the same pains and wanted to share what I’ve learned. When I start to feel stomach discomfort I chew a spoonful of fennel seeds. It helps relieve the bloating. If that doesn’t work after a few minutes I take some more and repeat if needed, there doesn’t seem to be any adverse effect from eating lots of them. I often wash them down with sips of peppermint tea, which aids the relief. Sometimes nothing seems to help and I can’t get comfortable. I’ve found that standing with my legs shoulders length apart, reaching down to my knees and slightly bending my knees helps me feel better. It somehow helps relieve the pressure from bloating. Also laying on my left side in bed is more comfortable than any other sleeping position. Hope this helps!

  17. Maggie S. says:

    Have you tried turmeric for the inflammation? I make a quart sized jar of tea with holy basil and rooibos (1 tsp each), then when it’s good and steeped, drain off the liquid (you can use the same herbs to steep another quart of tea), and add some almond milk (optional), 1/2-1 tsp turmeric, 1/2-1 tsp Ceylon cinnamon, 1/2 -1 tsp powdered ginger, and a sprinkle of cardamom. If you like to add some sweet, add a dash of stevia and a dash of celtic sea salt. Sip on this throughout the day. Turmeric is masterful at calming inflammation. I hope this might help someone.

  18. Carol Cripps says:

    Really, the only things that help are tea, pain-killers and sleep. I got hit by something this past weekend (at a friend’s home, of course) and the pain was unbelievable. I am gluten free to help with fibromyalgia, and I was barely able to walk as far as the bathroom, then back to lay down. Fortunately, my hosts were aware of what was going on, and they’d been so careful to eliminate gluten from all the food we ate, but still felt bad for me. They just let me sleep as long as I needed to, and gave me cups of tea when I roused enough to ask for them. Next time, though, I’m going to try ginger, and if I can find them, turmeric capsules.

  19. Joanna says:

    I am relatively new to the gluten-free lifestyle (I’ve only been gluten-free a couple months). But I have noticed that each time I am ‘glutened’ the reaction seems to be worse! I am terrified of gluten, now! It’s awful!

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