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

"glutened" Symptoms - When Did They Start?


Katrala

Recommended Posts

Katrala Contributor

I hear people talk about having symptoms after accidentally eating gluten. Some of these symptoms seem pretty severe.

I'm guessing that these symptoms haven't always been present (vomiting, etc.) so I'm curious how soon they started after you began the gluten-free diet?

I've been told you become more sensitive to gluten over time. If, for example, gluten didn't always make you have immediate severe stomach cramps, when did that begin? Had you been on the diet for awhile?


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



Celiac.com Sponsor (A8-M):



Karla01 Apprentice

I have been gluten free since August 13, 2010 since positive blood work and positive biopsy. The first time I got glutened since starting the gluten free diet was last week. I had the cramping, diarrhea for 3 days. I never had any vomiting however I have read that each individual is different. I have also read that the longer you are gluten free the worse the reaction is. I guess you will have to wait and see what your reaction is. Mine was about the same as why I went to be diagnosed in the first place. Hope this helped.

zus888 Contributor

I asked this same question not so long ago and the answers were various. Much of it depends on when you got glutened. For one person, it may have taken 6 months before an accidental glutening occurred. For another, it may be 3 months. I accidentally glutened myself after 3 weeks of being on a gluten-free diet, and I reacted. I didn't have any digestive issues (but I never did), but I did have an intense amount of fatigue and depression.

Katrala Contributor

So the longer you're on the diet, the more sensitive you typically become?

Some of the reactions I read about are violent and immediate, which is why I wonder when those type of reactions started.

adab8ca Enthusiast

i glutened myself in the MOST minor way almost 3 weeks ago. I never had GI symtpoms originally but within hours of this, I had all my neurological and joint pain, nausea and the added treat that I have had D ever since :(

txplowgirl Enthusiast

I've been gluten-free for 2 years now. There were times in the begining I belive I was gluten-free for about 4 months and I got vomiting and the big D within 15 minutes and it lasted a few hours. Now a days it can take up to a couple of days to feel the total effects and a glutening has lasted up to 3 weeks. Three of the most awful weeks I have ever had. But that being said. Everyone is different and what may happen to me may not happen for you.

Also, I have become super sensitive to the gluten. I have to eat a whole foods diet. I can't eat any of the gluten free foods without a reaction except for Lara and Kind bars. Why, I don't know.

NateJ Contributor

I'm pretty sure I got gluttoned yesterday. Happy Easter to me. After getting made fun of by my wife and brother in law at the grocery store, then enduring an hour of ridicule from my in-laws I ate Ham, potatoe salad and carrots.

Not sure what they put in it but I've been horrible all morning now. I'm never eating on holidays again.

D, cramps, fatigue, more D followed by cursing and now depression and anger.


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



Celiac.com Sponsor (A8-M):



CarolinaKip Community Regular

I hear people talk about having symptoms after accidentally eating gluten. Some of these symptoms seem pretty severe.

I'm guessing that these symptoms haven't always been present (vomiting, etc.) so I'm curious how soon they started after you began the gluten-free diet?

I've been told you become more sensitive to gluten over time. If, for example, gluten didn't always make you have immediate severe stomach cramps, when did that begin? Had you been on the diet for awhile?

Depending on how much the CC was.... It can start between a few hours and up to 12 hours. I get a headache, terrible brain fog, then terrible pain in my sides and cramping. I'm usually on the couch the first day. If working,it's really difficult to get through the day. The second day the brain fog is better, but my side pain last 3-4 days.

ravenwoodglass Mentor

I'm pretty sure I got gluttoned yesterday. Happy Easter to me. After getting made fun of by my wife and brother in law at the grocery store, then enduring an hour of ridicule from my in-laws I ate Ham, potatoe salad and carrots.

Not sure what they put in it but I've been horrible all morning now. I'm never eating on holidays again.

D, cramps, fatigue, more D followed by cursing and now depression and anger.

(((((((((((((((((((hugs))))))))))))))))))))))))

Hopefully after seeing the after effects at least your wife will take this a bit more seriously now. I'm sorry everyone gave you such a hard time.

OP Some of us react right away when we get glutened but for some of us it takes a couple days to have the gut reaction set in. Personally I have some symptoms, depression and balance issues and stomach pain with bloating that show up the first day but the D doesn't start until 3 days after I have been glutened.

NateJ Contributor

(((((((((((((((((((hugs))))))))))))))))))))))))

Hopefully after seeing the after effects at least your wife will take this a bit more seriously now. I'm sorry everyone gave you such a hard time.

Thanks. I like coming here to have my pity party with people who understand.

CarolinaKip Community Regular

Thanks. I like coming here to have my pity party with people who understand.

NateJ how long have you been gluten-free? I hate to read how some of you do not have understanding families. Mine understands and do not pressure me to eat, however they do not get the CC issues at all! At Thanksgiving my sister had the stuffing beside the turkey. I talked with her and brought my own food for Christmas. I was planning on eating the ham yesterday, but I walked in and she had rolls beside the ham. Not knowing what type of contact the rolls had with the ham, I didn't eat it. I brought my own meal, however not feeling so good today. I look around when they are eating and there are crumbs everywhere! I hope you feel better soon.

Perhaps your wife could read some of our post to help her understand how very real and important eating gluten-free is to us. Unless this is "your safe place" If you know what I mean. I sometimes wonder why it's so difficult for people to understand Celiac.

I know it sucks, hang in there!

srall Contributor

By the time I went gluten free (a year ago) I had already been experiencing constant nausea and brain fog for a couple of years. I figured out the whole thing by just doing a diet detox. I was desperate to feel better so I started eating vegan and also eliminated alcohol, coffee and dairy and of course gluten. I would have done anything to feel better. It didn't take long to pinpoint that gluten, dairy and corn were HUGE problems for me.

However 8 weeks after starting the diet I was traveling and thought I'd just be one of those people who ate a little gluten when it was impossible to be gluten free...such as in a hotel with a crappy restaurant attached. Um...and here is what happened: DH rash all over my body, joint pain that kept me bed-ridden for 3 weeks, slept 16 hours a day for 3 weeks. Brain fog...felt like I was drunk. I somehow managed to fly back to MN from RI alone with my 7 year old with two connecting flights carrying all of our crap. Still don't know how I made it. And, it was my daughter's 7th birthday. So I spent her birthday in a hotel room in bed, unable to move while she watched cartoons. I have a lot of making up to do this Monday, which is her 8th birthday. Anyhow, it took 8 weeks on the diet until I couldn't handle it at all.

I now eat meat, drink coffee and wine, and have bought carry on bags that have wheels attached. So, some lessons learned, some things figured out.

NateJ Contributor

NateJ how long have you been gluten-free? I hate to read how some of you do not have understanding families. Mine understands and do not pressure me to eat, however they do not get the CC issues at all! At Thanksgiving my sister had the stuffing beside the turkey. I talked with her and brought my own food for Christmas. I was planning on eating the ham yesterday, but I walked in and she had rolls beside the ham. Not knowing what type of contact the rolls had with the ham, I didn't eat it. I brought my own meal, however not feeling so good today. I look around when they are eating and there are crumbs everywhere! I hope you feel better soon.

Perhaps your wife could read some of our post to help her understand how very real and important eating gluten-free is to us. Unless this is "your safe place" If you know what I mean. I sometimes wonder why it's so difficult for people to understand Celiac.

I know it sucks, hang in there!

I've been gluten free for about 2 months now. Learning as I go. My wife has been pretty supportive most of the time, but I think she gets frustrated. Easter was my first 'holiday' and she got mad when i didn't want to go to her family's house. They are very stubborn and not the nicest people anyway.

I'm pretty sure it was cross contamination. her mom cooks with wheat and flour and lard in everything.

I haven't been able to eat real greasy stuff anyway and her cooking always did kind of bother me.

They were just like 'eat the ham its fine' i said no its been sitting out on your counter while you made rolls and pie crusts. They said I'm phobic and manic and just being difficult.

I wouldn't call this a safe place, its just a place to go and discuss with others who share my pain. I don't know anyone personally that has this problem/disease and i've been fighting depression and anger since I was diagnosed.

My so called friends have been distant and my kids are down right hostile towards me cause I won't order pizza or take them out to dinner. They think I'm just being an ass.

So far its been a constant battle everyday. I envy the people here who have supportive families and friends.

Maybe someday I'll get there.

I've noticed this is a lot like when I quit drinking about 10 years ago. Everyone takes it so personally that you won't drink with them, like you are insulting them or something. Avoiding work happy hours and refusing to go see my friend's bands play in bars because I don't want to be around alcohol.

Its a life decision.

IrishHeart Veteran

Nate,

You are fighting two fights---to regain your health and to have others understand why you absolutely have to eat a certain way to accomplish this. The only thing you can do is use the same resolve you used to quit drinking. One day at a time--and remembering that your life is worth saving.

You're a brave guy.

I sometimes think if we had cancer, we would get more empathy. They don't get celiac disease. If they walked in our shoes for a week, they might change their attitudes.

I am lucky my husband is so understanding. He even went gluten-free with me, even though I did not ask. I do not think I would have survived my 4- year descent into hell without him.

I am feeling your frustration. As much as I think I have educated my family and friends, they do not always "get it". And some of them have distanced themselves from me. Like it's my fault I got sick for 4 years and it's my fault I have this disease?? It is hurtful and depressing, I agree.

I feel pretty deserted sometimes.I kept researching until I found the answer and I was happy I to get the diagnosis because I knew it would help me get well again. My life was slipping away--that's how sick I was.

Saving my own life is my priority and I don't give a rat's butt if anyone likes it or not . If they aren't willing to help me, understand me or offer their loving support then, see ya!

That's not easy when your own kids do not get it.

Have you explained what gluten does to your body and why Daddy can't have it?

Maybe they should be gluten-free too? Have they been tested?

I wish it were easier. This is where I come to get real support. Only someone else with this thing "gets it".

Hang tough. You will start to feel better and it will become easier. I wish you well.

To the Original poster--My glutening symptoms are the same I felt before going gluten-free--brain fog, anxiety, bloating, diarrhea, nausea,and deep fatigue. I know it almost immediately. It happened accidentally at a Thanksgiving gathering at my sister's house. I also feel as if I have been drugged...it's a big clue....it lasts about a week.

WinterSong Community Regular

I've been gluten-free for a little over a month, and I've been doing really well. But I think I was glutened via CC Monday morning. It's now Wednesday, and I feel gross.

Symptoms:

D

Lack of appetite

Feeling like there's a brick sitting in the bottom of my stomach

Acid reflux

Loud stomach gurgles

Irritability

I was being so careful, too. <_< Hopefully this'll stop soon.

Hope everyone feels better!

NateJ Contributor

Nate,

You are fighting two fights---to regain your health and to have others understand why you absolutely have to eat a certain way to accomplish this. The only thing you can do is use the same resolve you used to quit drinking. One day at a time--and remembering that your life is worth saving.

You're a brave guy.

I sometimes think if we had cancer, we would get more empathy. They don't get celiac disease. If they walked in our shoes for a week, they might change their attitudes.

I am lucky my husband is so understanding. He even went gluten-free with me, even though I did not ask. I do not think I would have survived my 4- year descent into hell without him.

I am feeling your frustration. As much as I think I have educated my family and friends, they do not always "get it". And some of them have distanced themselves from me. Like it's my fault I got sick for 4 years and it's my fault I have this disease?? It is hurtful and depressing, I agree.

I feel pretty deserted sometimes.I kept researching until I found the answer and I was happy I to get the diagnosis because I knew it would help me get well again. My life was slipping away--that's how sick I was.

Saving my own life is my priority and I don't give a rat's butt if anyone likes it or not . If they aren't willing to help me, understand me or offer their loving support then, see ya!

That's not easy when your own kids do not get it.

Have you explained what gluten does to your body and why Daddy can't have it?

Maybe they should be gluten-free too? Have they been tested?

I wish it were easier. This is where I come to get real support. Only someone else with this thing "gets it".

Hang tough. You will start to feel better and it will become easier. I wish you well.

To the Original poster--My glutening symptoms are the same I felt before going gluten-free--brain fog, anxiety, bloating, diarrhea, nausea,and deep fatigue. I know it almost immediately. It happened accidentally at a Thanksgiving gathering at my sister's house. I also feel as if I have been drugged...it's a big clue....it lasts about a week.

yep, you hit the nail on the head. people just don't get it and don't want to get it. I would have thought it sounded goofy too. The gluten-free fad diet running around doesn't help either. But most people just kind of look at me like oh that sucks and then 5 min later ask me if I want a beer.

Its just been probably the worst 6 months of my life. And feeling like crap every morning doesn't help my mood.

I can honestly say at some points I have wished for death. I know its being a coward but I can say now that I've hit rock bottom so I can only go up from here.

I just need to figure out how to start back up.

IrishHeart Veteran

yep, you hit the nail on the head. people just don't get it and don't want to get it. I would have thought it sounded goofy too. The gluten-free fad diet running around doesn't help either. But most people just kind of look at me like oh that sucks and then 5 min later ask me if I want a beer.

Its just been probably the worst 6 months of my life. And feeling like crap every morning doesn't help my mood.

I can honestly say at some points I have wished for death. I know its being a coward but I can say now that I've hit rock bottom so I can only go up from here.

I just need to figure out how to start back up.

No, you are Not a coward at all!! Many people on here say they felt this same way...I have said the words, I'd rather be dead than live like this!! many times during the last 4 years....I did not really mean it because I fought hard to get well. I have excruciating muscles/joint/bone pain, my hair fell out, I felt crazed in my head... and dozens of other symptoms...and I just would not give up.

Do not give in. You are healing now and you will feel better. Hang in there, Nate!!

quincy Contributor

No, you are Not a coward at all!! Many people on here say they felt this same way...I have said the words, I'd rather be dead than live like this!! many times during the last 4 years....I did not really mean it because I fought hard to get well. I have excruciating muscles/joint/bone pain, my hair fell out, I felt crazed in my head... and dozens of other symptoms...and I just would not give up.

Do not give in. You are healing now and you will feel better. Hang in there, Nate!!

Hey Nate, I have been there and it has been hell for me this past year. the first 6 months were the worst for me too. I woke up every morning with the worst feeling ever. I had to take .5 mg of klonapin just to get through the nausea and the anxiety so I could go about the day.

I felt great in the sixth month. My mother is Italian and she tried to be supportive but she did not grasp what was really happening to me. It is hard to go through all your life suffering from something that finally has a name....

but you will get better and you will not be the same but you will be good all the same.

I have had to just turn people down when they offer me food.If I don't prepare it or someone who is gluten-free doesnt prepare it then I dont eat it. I had to be that way for awhile. when you let down your guard is when you pay the price and its not worth it.. take care of yourself first brother!

IrishHeart Veteran

Hey Nate, I have been there and it has been hell for me this past year. the first 6 months were the worst for me too. I woke up every morning with the worst feeling ever. I had to take .5 mg of klonapin just to get through the nausea and the anxiety so I could go about the day.

I felt great in the sixth month. My mother is Italian and she tried to be supportive but she did not grasp what was really happening to me. It is hard to go through all your life suffering from something that finally has a name....

but you will get better and you will not be the same but you will be good all the same.

I have had to just turn people down when they offer me food.If I don't prepare it or someone who is gluten-free doesnt prepare it then I dont eat it. I had to be that way for awhile. when you let down your guard is when you pay the price and its not worth it.. take care of yourself first brother!

I agree with Quincy! Just say No thanks!!...and know you are going to get well. I'm 4 months in and see a HUGE difference. I was in agony..I had nausea, pain and burning from my mouth to my other end.....(Yeah, anxiety too) the whole GI tract was inflamed and I couldn't eat or drink anything--not even water--- without pain and bathroom episodes.

Now, gluten-free, dairy free, soy free, using probiotics and digestive enzymes -- I have no need for Immodium or antacids or anything else I depended on for over 20 YEARS.

You'll get there...hang in.

Poppi Enthusiast

I've only been gluten free for 22 days now so I haven't had an major glutening accidents.

I have had 2 incidents of very minor cross contamination. The first time I was at a birthday party and only ate my own food except for a couple pieces of vegetables from a tray and a hot dog with no bun. The second time DH made me some toast in the morning and put peanut butter on it from the wrong jar.

Both times I felt unbelievably tired and fatigued within 30 minutes. For the rest of the day I was exhausted, bloated, nauseated and the brain fog was intense. In fact, the peanut butter incident was on Saturday and today (Thursday) is the first day I feel great again.

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. - 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - 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.

  • 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
      @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
      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
      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
      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
×
×
  • 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.