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" For First Time

LauraBeth

By LauraBeth
in Coping with Celiac Disease

Recommended Posts

LauraBeth Rookie
LauraBeth
Posted

So I've been on the gluten free diet for a little over a month now. I'm still working on getting a solid diagnosis because some of my test results were skewed by mistake. Anyway, overall I feel like I haven't improved much but I must have been making some gradual improvement and just wasn't really aware because I woke up this morning feeling HORRIBLE! I had dinner at my parents house last night and knew the food was safe- my mom is 110% supportive of this with me and knows the ins and outs of my new diet so it really didn't occur to me what had happened. Anyway, I made it up and got to work anyway. My main symptom (even since starting the gluten free diet) is severe exhaustion which fluctuates from day to day- it must have been improving slightly though. I could barely move today I was tired. I came home at lunch and slept. By this afternoon I was feeling super bloated/ gassy/ intestinal cramping (which I only ever had issues with sometimes), extremely dizzy and lightheaded, headache, and the tips of my fingers were numb and tingly. I'm feeling itchy all over now, too.

I started to think about everything I ate at my mom's, listing ingredients in my head, and then it hit me. I put seasoning on my vegetables. I thought- there is no way the seasoning had gluten in it! Well I decided to call my mom and have her look at the ingredients for me and sure enough! Says "contains wheat gluten" in bold letters. I cannot believe I didn't read the ingredients! I don't normally put seasoning on things, but it was there in front of me I just sprinkled a bit on without thinking much of it. I have certainly learned my lesson, but honestly this really confirms things for me. I have my first appt. with a GI doctor in a couple of weeks- we'll see how that goes.

Anyway, just wanted to say thank you for this great board, it has been so much help to me! I know now to read every single label, every time, even on things that seem harmless. I hope this passes quickly so I can get back to feeling at least semi- okay by the time I have to go back to work tomorrow. It is nearly impossible to function when I feel this fatigued; I don't even feel safe driving.

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

Celiac.com Sponsor (A8-M):


modiddly16 Enthusiast
modiddly16
Posted

I've been gluten free for 6 1/2 years and I can't count how many times this has happened to me. One week, I was on a garlic bread kick...I had my Against the Grain bread, butter spread and McCormick's garlic bread powder....little did I know that had bread crumbs in it!!! Seasonings can be very tricky!! I hope you feel better

Monklady123 Collaborator
Monklady123
Posted

Yah, I hear you. Mine was bottled bbq sauce. I was so careful -- we had steak (with just some salt and pepper), baked potato, and corn on the cob. No gluten anywhere in sight. So why didn't I think to read the bottle of bbq sauce? Who knows... my only excuse was that I'd only been at this diet for a few weeks. oy..

Hope you feel better soon.

AllergyQ Newbie
AllergyQ
Posted

I have been gluten free since only June and was not

sure if i was feeling any better until i was making Lipton soup for my girls and accidentaly sipped soup off the spoon to see if it was done yet.

As soon as i did it i realized my mistake and could not believe i had been so

unaware of my own actions. But when your kids are running around the house and your trying to get them dinner ready you can get a little razzled. It took about two days but i defintetly felt the effects. I hope i will not make this mistake again

but i probably will. Everyday i get a little better at this and the better i get at keeping gluten free the better i feel and the more careful i am the more days i have of feeling good. Today i feel great and that is an accomplishment.

LauraBeth Rookie
LauraBeth
Posted
  • Author

Here we are over 3 days later and I still feel horrendous! How long does this typically last for? I am so uncomfortable. :(

i-geek Rookie
i-geek
Posted

For me the worst is usually over after 3-4 days. It's a few more days after that before I'm feeling back to normal. Hopefully you'll start feeling better quite soon.

juppygirl Newbie
juppygirl
Posted

I had something (not sure what) in the last 24 hours, woke up with my rash, dicky tummy. Went to work feeling like hell then got lost and confused going to see a patient!!!! Had to come home as felt horrendous, couldnt concentrate felt steamrollered and went to bed!! :o So you are not on your own. It's one year since diagnosis. Havent been glutened for a couple of months and this happens!! Big reminder not to get complacent!

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

Celiac.com Sponsor (A8-M):


LauraBeth Rookie
LauraBeth
Posted
  • Author

Thank you guys for all replying to me. It's good to know I am not just "over-reacting" or anything and there are others who feel like I do.

precious831 Contributor
precious831
Posted

Your screen name sounds familiar from another board.

Anyway it takes like 5 days or so for me, depending on what I ate. I'm kind of sensitive. I feel horrible and have the GI and rashes as well, headaches, brainfog, swelling of joints.

Feel better soon!

cap6 Enthusiast
cap6
Posted

I have been gluten-free since March 2010. I have been glutened twice while eating dinner out and each time I when I looked at the meal (broiled fish, steamed veggies) I just had a funny feeling that something wasn't quite right and it wasn't! I am trying to learn to listen to my internal self and not be quite so afraid to make a fuss if i suspect the meal i ordered isn't right.

Marz Enthusiast
Marz
Posted

Don't worry, it happens to all of us. I've been gluten-free for just over a month now, and it's a case of feeling great for a few days, accidently getting glutened, feeling crap for a few more days, and the cycle starts all over again. Each time I just ID what I did wrong, add it to my watch list and continue.

Most mistakes are from "spontaneous" things I've eaten, like just having some chips off my DH's plate, or accepting some sweet/chocolate/unknown coffee from a family member or friend. Was particularly upset with the coffee - who the hell puts wheat protein in coffee? Cheap-skate coffee brands :(

The last one was rice crackers that didn't state anything about "traces of gluten" or being made in a factory that manufacters wheat. I should've known that doesn't mean it's safe, and I know the manufacturer makes wheat products, so I definately got some CC there. Even "Gluten-free" cookies can make me ill.

So now I've decided - food is fuel, for now I'm only eating safe food I've prepared, or treats I know are safe (PB and rice cakes that I don't react to, for example). The aim is zero tolerance to gluten, but I don't beat myself up if I slip up, my body does that already, don't need to add to the misery :P

cap6 Enthusiast
cap6
Posted

we eat to live,we don't live to eat. I'm ok with that most of the time...however .... some days I still want to stamp my feet like a kid and want to eat what I want to eat. Then I remember how sick I was. lol Hard to relearn almost 60 years of eating.

And what do you mean coffee?? I know that flavored coffees are not ok, but regular coffee??

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
      133,333
    • Most Online (within 30 mins)
      7,748
    Donna Chem
    Newest Member
    Donna Chem
    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.