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

Twizzlers Did Me In...

Amyleigh0007

By Amyleigh0007
in Coping with Celiac Disease

Recommended Posts

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

I gave in. I ate Twizzlers. I shoved them down my throat when my son was outside. I inhaled them when he went downstairs. I ate more while he was in the bathtub. I knew I shouldn't have bought Halloween candy this early.... Anyway, I am not sick. I had mild nausea (anyone would who just ate their weight in Twizzlers) but that's it. No D, no headache, no extreme fatigue. Why? Part of me is thrilled with the thought that I might be able to cheat now and then. The other part of me is pissed. Why am I avoiding all this food when I don't even get sick anymore? Did my body heal and now gluten doesn't affect me like it used to? What is going on??

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Hummm...well, you know that everyone is different.

Your reaction time could be extended. You might not know what tomorrow will bring.

(twizzlers were very hard for me to digest, when I did eat them. A bady tummy is understandable.)

mysecretcurse Contributor
mysecretcurse
Posted

It might take longer to see a reaction. It's taken awhile for me before.

happygirl Collaborator
happygirl
Posted

According to your signature, you were never diagnosed with Celiac.

So, if you look at it from the approach that you don't have Celiac, you don't know why you were having reactions to gluten. Whatever it was may have cleared up. You may have a 'threshold' of gluten intake that you can tolerate. Or...<insert other reasons here>

Amyleigh0007 Enthusiast
Amyleigh0007
Posted
  • Author

Thanks for your replies. It's interesting to get others opinions. I might be counting my chickens before they hatch. I should give it a bit longer before I celebrate with more Twizzlers. My Celiac testing was messed up so my results were not accurate. I actually don't really know if I have Celiac. I do not wish to gorge myself with gluten for 3 months in order to get an accurate test. But, I do know I have a problem with gluten. Going off gluten has made a huge difference in my health. So, I will wait and see.....

kbtoyssni Contributor
kbtoyssni
Posted

I'm in the same boat as you. I often don't feel sick when I get glutened, but if I gluten myself several days in a row I start to get sick. Maybe you should eat twizzlers once a day for the next week and see what happens :) I'm thinking I either have a much higher gluten tolerance level than others and my immune system can handle it now that it's healed or I am getting damage but it just takes a few days for reaction to make it to my joints and muscles to make them hurt.

DarkIvy Explorer
DarkIvy
Posted
I'm in the same boat as you. I often don't feel sick when I get glutened, but if I gluten myself several days in a row I start to get sick. Maybe you should eat twizzlers once a day for the next week and see what happens :) I'm thinking I either have a much higher gluten tolerance level than others and my immune system can handle it now that it's healed or I am getting damage but it just takes a few days for reaction to make it to my joints and muscles to make them hurt.

I tend to be the same way. Last year I'd cave once and a while and eat "real" pizza with my friends with no issue. But if I ate gluten every day for several days (like I did whenever I left the country or because of CC issues in the sorority house) I was always sick, had D, throwing up, super fatigued, depressed, and anxious.

All the same, it's been so long now since I have cheated that I'm wary of experimenting anymore. Plus even just once I tend to get anxious and tired.

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

Celiac.com Sponsor (A8-M):


Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I think there are degrees of damage from gluten intolerance (including but not limited to official celiac). Those who have not suffered years and years of the truly debilitating symptoms don't seem to get as severe a reaction once they have healed.

As long as the only culprit is gluten (i.e., we're not talking about other food intolerances, Lyme, or any other causes), I don't believe it matters whether or not your official diagnosis is celiac or gluten intolerance; nor does it matter how mild your reactions are--the unseen damage can be just as severe, whether or not you have villi damage. If you cheat, you could be triggering lupus, RA, diabetes, Hashimoto's, or even cancer.

Since DH sufferers have an automatic diagnosis of celiac even though they may present with no intestinal symptoms or villi damage whatsoever, it's not even a baby step to understand that celiac can present in ways other than damaged villi. So that, I believe, takes the validity out of the whole biopsy diagnosis as"gold standard" idea currently in use.

As for genetics, there are people on this board who have biopsy-diagnosed celiac who do NOT have the supposed "celiac genes." So either they've been misdiagnosed, or the idea that celiac is limited to those with "the genes" is plain wrong, but either way, something is not Kosher with the diagnostic process.

The current thoughts on the "celiac genes" are based on studies of genes from those who were diagnosed by biopsies. I can't find any studies showing the genetics of those who do have celiac symptoms but either a negative biopsy or no biopsy. If people have can have celiac with no villi damage (like Dh sufferers mentioned above), why are they still drawing the conclusion that you have to have villi damage to have celiac?

And that doesn't even consider the number of biopsies that either miss a damaged patch of villi, or the doctors who misread it.

msmini14 Enthusiast
msmini14
Posted

Welcome to the site Steve! =)

hehe I would love to eat a real piece of cheesecake.....mmmmm. lol I always say that. I wont do it though, no gluten is worth it. If the doctor asked me to eat gluten for 3 months, I would be so sick. Last time it was only 3 months before I was dx'd and I dropped so much weight, not doing that again lol.

Good luck to you =)

Amyleigh0007 Enthusiast
Amyleigh0007
Posted
  • Author

You all had some great insight. I do feel sort of yuck today (headache, yawning all day, muscle pain) but it's not nearly as bad as it used to be (D for hours, extreme fatigue). I would never give up on the gluten free diet just because I ate a few Twizzlers with little ill effects. I am a strong believer of the gluten free diet and eating a few pieces of candy that contain wheat flour won't change that. Today it was back to 110% gluten free. We are all human and prone to giving in at times (especially during this time of year when treats are going to be everywhere you turn). I am glad I have a group of people like you all to vent to, people who understand and may be going through the same things I am. Thanks!!

Lisa Mentor
Lisa
Posted
You all had some great insight. I do feel sort of yuck today (headache, yawning all day, muscle pain) but it's not nearly as bad as it used to be (D for hours, extreme fatigue). I would never give up on the gluten free diet just because I ate a few Twizzlers with little ill effects. I am a strong believer of the gluten free diet and eating a few pieces of candy that contain wheat flour won't change that. Today it was back to 110% gluten free. We are all human and prone to giving in at times (especially during this time of year when treats are going to be everywhere you turn). I am glad I have a group of people like you all to vent to, people who understand and may be going through the same things I am. Thanks!!

Well, I hope you enjoyed them ;) Don't feel too bad. I don't condone an occasional temptation, but it's just hard to be perfect. :P

Mtndog Collaborator
Mtndog
Posted

Twizzlers- Ahhh! I got glutened by them over the summer accidentally and it took me 3 days to react. Mostly, uhm, unpleasant bathroom experiences. Hope it doesn't get you too bad!

Amyleigh0007 Enthusiast
Amyleigh0007
Posted
  • Author

I know this is old but I wanted to update it. I was concerned because I did not get ill right after eating Twizzlers. Well, it's been about 5 days now and I've been sick for the past 4. I guess it was a late reaction. I haven't had D and stomach pains like in the past. It feels more like a hangover. I am still not feeling better. My belly bloat is back and my pants do not fit me! That symptom alone will make me not give in to my temptations again! I have learned my lesson!

  • 7 years later...
Jdentice1 Newbie
Jdentice1
Posted

Good point someone made about the internal damage.  Physical reaction or not, the worry is what is happening that u can't see. 

Newly diognosed in March, with celiac and Crohn's, so I'm still new at all of this... someone made reference in a post to Dh. What is that? 

cyclinglady Grand Master
cyclinglady
Posted
6 hours ago, Jdentice1 said:

Good point someone made about the internal damage.  Physical reaction or not, the worry is what is happening that u can't see. 

Newly diognosed in March, with celiac and Crohn's, so I'm still new at all of this... someone made reference in a post to Dh. What is that? 

Welcome to the forum!

An itchy, blistering, burning skin rash, dermatitis herpetiformis (DH) is a difficult condition to live with (better known by our members as the "rash from hell".  The rash and itching can occur on the elbows, knees, scalp, back, and buttocks. This rash is triggered by gluten, which is a more serious underlying condition that's also known as celiac disease.

 

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. par18
      - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free...
    2. Celiac.com Sponsored Post
      0

      An Inclusive Valentine's Day: Easy Tips for a Celebration Everyone Can Enjoy

    3. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    4. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    5. 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...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748
    Erica Johnson
    Newest Member
    Erica Johnson
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • par18
      IBS-D vs Celiac

      By par18 · Posted

      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • 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! 
×
×
  • 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.