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

Recommended Posts

Amyleigh0007 Enthusiast

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

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

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

happygirl Collaborator

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

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

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
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

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

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

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
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

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

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

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
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 rashdermatitis 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.

  • 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. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,156
    • Most Online (within 30 mins)
      7,748

    mike101020
    Newest Member
    mike101020
    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

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.