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

Recommended Posts

LauraBeth Rookie

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

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

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

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

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

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

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

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

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

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

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

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.

  • 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. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    2. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    3. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      17

      My only proof

    5. - Xravith posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,463
    • Most Online (within 30 mins)
      7,748

    The Yellow Rose
    Newest Member
    The Yellow Rose
    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

    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
    • knitty kitty
      What exactly are you taking from doterra? 
    • Xravith
      Hello, I'm back with a second post. The first time I wrote, I mentioned the possibility that my symptoms were related to gluten. I did a genetic test in which I resulted to have the predisposition, but the results of my blood test were all negative without IgA deficiency. My doctor suggested that it was necessary to do a biopsy to rule out Celiac Disease. However, he said, because of my family history and my symptoms were strongly related to gluten, it was very possible that my Celiac Disease is developing and my antibodies may become positive in the future.  I tried to continue the gluten challenge for the biopsy, around 2-3 g of gluten per day, but it was enough to make me feel worse each passing day. I started developing anemia and other mild nutritional deficiencies, and it was really affecting my daily life. I'm a student and exams are coming up, so my doctor suggests me to strictly remove gluten until I feel better so I could study without problems until I could do the gluten challenge when I come back home for holidays. Since going gluten free, I feel like a completely different person. My mind is clearer, I have no stomach pain during the day, and even my nails improved within just two weeks. It could also be Non-Celiac Gluten Sensitivity, but of course I’ll need the biopsy to know for sure. I was wondering, has anyone else had negative blood tests at first and later tested positive? And has anyone struggled with the gluten challenge because of symptoms?
×
×
  • 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.