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

I Must Apologize

jenngolightly

By jenngolightly
in Coping with Celiac Disease

Recommended Posts

jenngolightly Contributor
jenngolightly
Posted

I have always had tough side effects from gluten. I'd writhe in pain and have to stay home for days because I couldn't be 20 feet away from the toilet. Migraines, vomiting, cold sweats, etc.

But the other day it happened. I was in such terrible pain that I had my son take me to the ER. I tried to wait it out, but it kept getting worse and worse. By the time he took me, it felt like I was having contractions!

I used to read posts from some of you who would talk about going to the ER for post-glutening symptoms and I'd always think to myself, "Geesh, suck it up!"

Now I can be so much more sympathetic!

So here's my interesting story...

I ended up getting a CT scan of my abdomen. They needed me to drink about a quart of this liquid "contrast" so they could see what was wrong. Fine. No problem. I'm dying, but I'll drink your liquid contrast.

They bring me this red drink and I drink two sips and throw up. I TOLD them that I don't eat gluten, sugar, dairy, corn, soy, preservatives, artificial stuff, etc. It's been out of my system for so long that my body expelled it as soon as it got to my stomach. It was actually quite funny now that I think back. :-)

I asked to see the ingredients of the drink they gave me. Of course it was fruit punch with the contrast mixed in. Supposedly this contrast stuff is awful tasting. So I told them again about what I do and don't eat. So they bring me some kind of powdered juice drink with no sugar mixed with the contrast in it. The doctor came in to give it to me. By then I was out of my mind in pain and screaming that I don't drink that sh*t and just bring me the g*d d*mn contrast and I'll drink it straight from the bottle!!!! The doctor was furious with me and telling me that it tastes terrible and he's sure I won't drink it. I'm telling him that I threw it up when it was mixed with the juice, so how much worse could it be? He STORMED out of the room. A nurse brought me water with the contrast. Wouldn't you know? It tasted fine.

All ended well. I was given some super-duper laxatives and sent home that night on Oxycontin.

I'm still mad at that doctor for getting angry that I wouldn't drink fruit punch or diet fruit punch, so I'm not tempted to go back to the ER anytime soon. Having food issues is tough and when you're in a confined space like an ER, it's more difficult.

So a big I'M SORRY to all of you who've gone to the ER when you've suffered from gluten poisonings! I'll read your posts with sympathy from now on. :D

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

Celiac.com Sponsor (A8-M):


kwylee Apprentice
kwylee
Posted

So glad you stood up for yourself. Isn't it doctors who are supposed to go by the adage, "First do no harm"????

I had to smile at your story. Would have been great if you would have barfed on his shoes!! Hope you're feeling much better.

Roda Rising Star
Roda
Posted

We don't give our patients the contrast with anything BUT water. On occasion when we have a child we may mix it with some kind of punch, but water is usually the only option at my facility. Glad you survived the glutening!

K8ling Enthusiast
K8ling
Posted

Oh my goodness, that's like when I went to the ER for an IV from my morning sickness and he ran a Pregnancy test (not quant, just one to see if I was pregnant!!) and gave me a bunch of tests before even getting me an IV! And then he gave me the wrong anti nausea!! I had told them when I came in that Ineeded an IV and some IV zofran and he totally ignored me. And brought me CRACKERS! After I told him I had Celiac!!

My OB said ER doctors hate to be told what to do, I bet this was the case here too. I hope you never have to go back!!!!!

jenngolightly Contributor
jenngolightly
Posted
  • Author

I've found that most times people are pretty nice about my diet, but I wonder if deep down they don't really believe that you can be THAT resolute about not eating things that you can't tolerate. Especially for medical reasons. As if the doctor was SURE I'd drink fruit punch at that moment because it was medically necessary (thanks Roda for clearing that up for me). It's not that I wouldn't drink it, but I clearly couldn't drink it because I vomited my lunch all over the poor nurse (yes, kwylee - would have been great if the doc had been next to me at that specific time). I should have known to ask what that fake pink stuff was that they were shoving in front of me, but I was in so much pain that I trusted the medical staff. They're always in a hurry with too many patients. I wonder how I could handle it better next time? If I have to go back, that is. I'd rather be prepared - but I hope I never have to go - thanks for the story K8ling! :D

cyberprof Enthusiast
cyberprof
Posted

My OB said ER doctors hate to be told what to do, I bet this was the case here too. I hope you never have to go back!!!!!

Ha ha LOL! My "baby" brother is an ER doc.

  • 1 month later...
hammergirl Newbie
hammergirl
Posted

This is a random comment: but I seriously hope that I can get my body to immediately react to gluten the ways yours did! I would much rather take a momentary vomit rather than dealing with the pain and cramping and serious D!

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

Celiac.com Sponsor (A8-M):


jenngolightly Contributor
jenngolightly
Posted
  • Author

This is a random comment: but I seriously hope that I can get my body to immediately react to gluten the ways yours did! I would much rather take a momentary vomit rather than dealing with the pain and cramping and serious D!

I'm quite sure I threw up because of the sticky-sweetness of the punch because I don't eat sugar or artificial sweeteners. The mixture was gluten-free. Yes, it would be great if I could immediately vomit from gluten.

It's funny you wrote this now because I was at the grocery store and in the juice isle yesterday for some reason. I saw a jug of Hawaiian punch and I felt distinctly nauseous and had to quickly exit towards the meat department. :-)

WhenDee Rookie
WhenDee
Posted

Oh, lovely. A doctor who knows FAR LESS than he THINKS he knows. Always a delight. ;)

Too bad this kind of doctor is so darned commonplace.

sandrad Newbie
sandrad
Posted

Funny...when i had my ct scan a few years ago the contrast was mixed in water and it tasted fine...now barium is another thing ;p

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.