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

Gluttened... What Does It Feel Like?

designerstubble

Recommended Posts

designerstubble Enthusiast
designerstubble
Posted

I'm a sort of newbie, getting to grips with stuff. Loving the forum (thank mother earth for this forum!).

I've been gluten-free for 10-11 weeks, had various odd symptoms and strange body things not to mention the mention hairloss.

But. I keep reading about being gluttened... What are the symptoms? I've just posted a topic on the different levels of celiac as I'm wondering would I know if I'd been gluttened? Is it possible I'd show few/no symptoms?

Is it possible I've escaped being gluttened in 3months of being gluten free? My kitchen still contains many gluten products (as my son and husband still eat the usual bread, cereals etc) and there are often crumbs on thr floor/table as much as I do try to clear up ALL the time, it's inevitable with a 5 year old.

Could I just be 'less' sensitive? Or have I just been lucky?

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

everyone is different there is no clearcut answer.

designerstubble Enthusiast
designerstubble
Posted
  • Author

Yes, I'm thinking maybe the nightsweats I've experienced twice could've been a glutening... It's so frustrating this celiac?!

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Frustrating? Yes for sure :)

It might be worth writing symptoms down. Great if you can do it alongside a food diary, but also useful on its own.

3 months in I am starting to recognize my glutening symptoms.

My worst one I swelled up like I was 7 months pregnant and had raging gut pain.

Most since then are more subtle. So first I am dog tired, like flu, then mild D, then anxiety and depression kick in.

I think it is like a mini version of how I used to be most of the time before improvements on the gluten-free diet.

Some people are way worse, some dont even know. You gotta love it :)

julissa Explorer
julissa
Posted

for me, I get dizzy and nauseous. that's how I felt coming in to my gluten free life, and that's how I felt when I glutened myself. hope you keep feeling good!

Coryad Rookie
Coryad
Posted

Frustrating? Yes for sure :)

It might be worth writing symptoms down. Great if you can do it alongside a food diary, but also useful on its own.

3 months in I am starting to recognize my glutening symptoms.

My worst one I swelled up like I was 7 months pregnant and had raging gut pain.

Most since then are more subtle. So first I am dog tired, like flu, then mild D, then anxiety and depression kick in.

I think it is like a mini version of how I used to be most of the time before improvements on the gluten-free diet.

Some people are way worse, some dont even know. You gotta love it :)

This is exactly how I feel when glutened.... I also get like a racing heart, palpatations with the anxiety.

It really is different with everyone though, the idea of writing everything down along with a food diary is ideal. Especially at the beginning :)

Cory

Hala Apprentice
Hala
Posted

I start to feel sick, then I get awful stomach cramps (generally at night) and insomnia. I don't normally sleep at all on the night of a glutening. By the next morning I'll have a sore, bloated, 'dodgy-feeling' stomach and either 'C' or 'D' and transient nausea. I'll also be really lethargic, irritable and depressed and will have a killer headache.Basically, I should be avoided for the next few days at all costs, haha!

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

Celiac.com Sponsor (A8-M):


srall Contributor
srall
Posted

I agree everyone has different symptoms. Also, I have learned that I have specific reactions to different foods. In the past I have blamed all my stomach issues on gluten, when I now know they are really a reaction to dairy. (My daughter though still has clear stomach issues if glutened)

My first sign of getting glutened is that I go outside my head...like I'm very very buzzed or drunk. If it's a bad glutening (and there have only been 2 of these in 2 years) I will have pain that is like fibromyalgia mostly in my upper body. This has lasted two to three weeks. I feel depressed and exhausted. My joints hurt and I know that nothing will get done for a few days at least. It really took me until the second glutening to come to terms with the fact that I have an AI disease and I am going to lose days to it despite doing the best I can to avoid gluten. So, on the days I feel good I try and get as caught up as possible, so when the down days come I can just do what absolutely has to get done.

I think after awhile you'll start to recognize the symptoms. My advice is to be careful. I cannot stress this enough.

TGK112 Contributor
TGK112
Posted

I'm a sort of newbie, getting to grips with stuff. Loving the forum (thank mother earth for this forum!).

I've been gluten-free for 10-11 weeks, had various odd symptoms and strange body things not to mention the mention hairloss.

But. I keep reading about being gluttened... What are the symptoms? I've just posted a topic on the different levels of celiac as I'm wondering would I know if I'd been gluttened? Is it possible I'd show few/no symptoms?

Is it possible I've escaped being gluttened in 3months of being gluten free? My kitchen still contains many gluten products (as my son and husband still eat the usual bread, cereals etc) and there are often crumbs on thr floor/table as much as I do try to clear up ALL the time, it's inevitable with a 5 year old.

Could I just be 'less' sensitive? Or have I just been lucky?

I read both your posts - and Identify with you a lot! I am just over 3 months gluten free - and am totally unaware if I have ever been glutened. I never had classic symptoms before diagnosis - and feel that I have been careful. But it's hard to believe - as a newbie - that I haven't made any mistakes over the past several months. I put a post out a while ago - also asking if there are different degrees of sensitivity - I was wondering if for one person it takes a speck of gluten to get a reaction , while for others it may take much more. I will have follow up blood tests and endoscopy in February - I am anxious to see if there is improvement. To me - that will be the only indication that I have actually been gluten free.

KMMO320 Contributor
KMMO320
Posted

I'm a sort of newbie, getting to grips with stuff. Loving the forum (thank mother earth for this forum!).

I've been gluten-free for 10-11 weeks, had various odd symptoms and strange body things not to mention the mention hairloss.

But. I keep reading about being gluttened... What are the symptoms? I've just posted a topic on the different levels of celiac as I'm wondering would I know if I'd been gluttened? Is it possible I'd show few/no symptoms?

Is it possible I've escaped being gluttened in 3months of being gluten free? My kitchen still contains many gluten products (as my son and husband still eat the usual bread, cereals etc) and there are often crumbs on thr floor/table as much as I do try to clear up ALL the time, it's inevitable with a 5 year old.

Could I just be 'less' sensitive? Or have I just been lucky?

I am still new to it too. 4 months in and feeling much better. I have been glutened, always my own fault. My blood tests and endoscopy show negative, but my dr still believes I have celiac disease based on how I feel when I don't eat vs. eat gluten. When I don't eat it, I feel great. I feel awake, is how I describe it. I can think straight and my head is clear and I dont feel so tired and run down.

When I eat it, even a bite, I get a headache within 20 mins and my stomach bloats, I feel sick to my stomach. and I get a light dizzy/woozy feeling. Sometimes it only lasts a few hours, some times I wake up the next day feeling like I am hung over. One time, I was cutting a piece of cake for a customer at work (I waitress) and just out of reaction, I licked my finger..which is bad at work anyway but it was just instinct. I washed my hands and thought, omg, what did I just do? Then I thought..no no, I will be fine, a lick of crumbs wont hurt me! Wrong. I wasn't deathly ill, but ill enough to make me uncomfortable.

Fortunately for me, at this point, where I was diagnosed early before I had a lot of damage, I do not get really, really ill. All of my symptoms were manageable, I could still carry on about my day well enough, I was just always very very uncomfortable. When I eat gluten, my brain gets real foggy and I start to stutter and slur, as if drunk. My husband can tell immediately when I have eaten something I shouldn't by the way that I talk. I have ALWAYS had a slight stuttering problem since I was a kid, and once I went gluten-free...it went away, unless I eat it.

My heart goes out to those who were not diagnosed for years and years and have so much damage that they have been severely ill :( For those people, I think accidental glutening is much worse. BUT, I do find that the longer I am gluten-free, the stronger my reactions get when I do eat it.

designerstubble Enthusiast
designerstubble
Posted
  • Author

Oh I'm glad I'm not the only one! It's strange, I also think that I must have slipped up in these last weeks... I'm sure I'll find out sometime! The only thing I have not been able to resolve is my D. It hasnt gone away. At all. It's actually more of a loose bowel, there's no increase in frequency. I saw a dietician yesterday who said it could be because I am eating too much fibre. She said to have a 2/3 slices of gluten-free bread everyday to see if it helps. I have done that today for breakfast. My stomach however is just not agreeing with it, it hasn't been this noisy and disagreeable since before diagnoses :( I have been on a very clean diet really, I wonder if my body just doesn't want this processed junk? Any ideas on how to get balance out the high fibre...? Aaaaagh! Help!

srall Contributor
srall
Posted

When I am not doing well, because even on a completely gluten free diet there are times when I'm just not feeling great, I will get myself to a paleo or perfect health diet (which allows rice and potatoes). I do organic, whole foods and only feed myself. This is how I feel absolutely the best. I personally cannot handle gluten free substitutes at all.

And just for more support to drop the gluten free processed: My now 9 year old daughter was still eating sandwiches everyday, because she's a picky eater and I think I was getting lazy about requiring her to eat better. Well Monday and Tuesday I was home with a sick child for the 3rd time in a month and it reminded me of the days before we changed our diet to a gluten/dairy/corn free diet.

Well, we are going to move her off the gluten free bread. It's now banned. She can learn to eat a proper meal. So I'm hoping this takes care of the last of her problems. I just really really don't like the gluten free bread (from a health standpoint I mean)

Also, Designer, you may just need more time.

For about 2 to 3 months it was like my body detoxed. I pooped (loose) about 4 to 5 times a day. Then everything sort of settled down.

So: Whole foods, organic if possible, eat at home what you prepare and lose the processed. Good luck.

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
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    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

    • 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.