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...first Time In 3 Years!


Litty Love

Recommended Posts

Litty Love Newbie

Phew! :wacko: Well I found out I am Celiac at age 19, and am now 22 years old. I eliminated everything I could pretty quickly. Since then my body seemed to get more sensitive to many foods; I can't eat GMO corn, no non-organic dairy at all, and organic foods as much as possible. Also, for some reason bananas aren't great. Then it started to get a little less sensitive for a while, I felt like my immune system was level, and my digestive system was pretty solid! :D

 

Then one day, I went to my tried and true- trusted restaurant who are normally extremely good about preparing Gluten-Free foods. I ordered the burger on a gluten-free bun. Hooray! I was starving,so when it came, I chowed down.  About 3 bites in I thought "Dang, this is awesome, this bun tastes so good"  Then it hit me, oh no.. :blink: This isn't a gluten-free bun is it.. So I asked, and it definitely wasn't.. :o  I hadn't eaten that much gluten since age 19!! I almost started crying right there :unsure: , I was so afraid of what was going to happen. Well I immediately went to the store and purchased probiotics, gluten-ease enzymes, a papaya, everything and anything to help! It was weird, I got really bloated but didn't quite have the same reaction I was expecting. 

 

A couple days later then it started to happen. I started having all the normal symptoms, rashes, abnormal bowel movements, bloating, foggy head, fatigue, immune system depression, etc. -_-  

 

It's been a couple weeks, but now I'm reacting to so much! Two times in the past week I've had to call in sick to work and just sleep. I've been completely forgetting tasks at work, mood swings out the wazoo (Sorry boyfriend!! I feel like such a jerk sometimes for my crazy mood swings ). I don't know if I've got some sort of contamination happening, or maybe since that hamburger incident my gut was re-damaged and now I'm hyper sensitive again? I worked so hard to get it back to normal. :(

 

I'm also having swollen lymphs, and hard time sleeping..

 

Any advice on how to deal with this? How to speed the repair along so I can get back to normal? 

Also..any advice on how to deal with a significant other during mood swing times? :wub: That's another whole can of worms..

 

PS. thanks for the ranting space--this helps so much!!  :lol:  :lol:

 

 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Oh, no!  I am so sorry to hear that you got glutened!  I hope you will feel better soon!

 

I can completely relate.  I'm still a newbie (dx in March).  I went to lunch a few days ago with a friend and I chose the restaurant.  They had a gluten free menu and I ordered a hamburger with just lettuce, tomato and no condiments.  My side salad had no dressing.  I joked about the bun being just okay and that I've come to like eating burgers wrapped in lettuce.  Within minutes, indigestion started.  We shopped afterwards at the mall and I felt fine.

 

That night I woke up with abdominal pain, nausea, "rock-feeling" in my stomach, and I couldn't sleep.  Got up to watch TV.  Barely functioned the next day with body aches added to my growing list of symptoms.  Slept better the next night and then had a headache all day was very cranky. My tummy issued persisted.

 

I wrote two reviews on "Find Me Gluten Free" and "Yelp".    I just nicely complained that the restaurant must have had cross contamination issues and the rest of my party enjoyed their food and service.  I warned those with celiac disease to be careful!

 

Would you believe the restaurant sent me a message?  Too sick and tired to deal with it now, but I will respond. Maybe I can help someone else from getting glutened!

 

So, as far as your boyfriend and mood swings?  I can't help you there.  I"m still trying to figure it out myself.  But the mood swings are real and they happen to my hubby too (he's been gluten-free for 12 years).  That's one of the symptoms where we stop and say, "I must have been glutened!"  (Besides our other gluten related issues.)

 

If I had eaten some offending food (e.g. garlic), it would be over in two days.  And that's what happened when I accidentally glutened myself in the first month or so of going gluten free.  Now, the reaction is much more severe!

 

I went on vacation to visit family, ate out a few times and did not get glutened (even at Wendy's).  So, I thought I was safe in my own hometown! In the future, I'm going to always talk to the manager (when I get enough courage to eat out again).

 

Hang in there!

dilettantesteph Collaborator

I'm so sorry.  I think that it would help to get on as clean a diet as possible.  Also, get lots of rest, drink plenty of fluids, and do some mild exercise.  I think that you body is very busy with the restaurant contamination and it does't need anything else to deal with.  I can't imagine what would happen to me if I ate that much straight gluten.  No wonder you felt like crying.  I hope you feel better soon.

nvsmom Community Regular

(((HUGS))) I am afraid that I don't know any tricks to make it pass faster.  :(  As the others said, I would keep you diet simple and clean and rest as much as you can....

 

Congrats on staying gluten-free for three years. You've done a great job! It's a shame someone mad a mistake on you... Hope you feel well soon.

notme Experienced

rest as much as you can and drink lots of water - you are sick, you would baby yourself if you had the flu, right?  my gluten after-effects stay for 2 weeks  :(  i have to keep reminding myself that i do NOT hate everybody it's just the gluten messing with my mind.  

 

((((hugs))))) i am 6 months without doing myself in <that's a record for me :)  so, i feel for you, sweetie!   feel better

Litty Love Newbie

Thanks for your response!

 

Yes I have had a lot of hesitation when eating out, of course. Many people don't even know what it is! I understand that, I did't know much about it in the beginning either, but of course now it's a lot easier. But even 3 years in I still am finding out new things to avoid. 

 

I understand the rock feeling in the stomach, inability to sleep etc. Good for you for writing the reviews! I haven't heard of that website, but I'm going to check it out, hopefully it's in my city. I think it would be a great idea to come out with an app for the phone that lists Gluten Free places-- but with a level. Like, who has real options & knowledge about gluten, and who is just slapping the label on their menus for marketing purposes.

 

Then another problem is that when going to a restaurant sometimes the servers will think that they know gluten really well, but don't. One time I went to a really fancy restaurant, and one of the deserts that my date ordered was a "malt milkshake" I asked the server twice if it was gluten free...(Malt is one of the main things that's definitely not gluten free!) He assured me it was, and then even checked with the Chef too. They insisted it was gluten-free.  There is a small possibility that it was Malt derived from corn, and actually was gluten-free, but I kind of doubt they knew that much detail. So basically, I'm very skeptical now.

 

That's awesome they sent you a message back, were they apologetic? The restaurant I went to was very apologetic, got a refund immediately, and replaced my burger on the gluten-free bun. 

 

Your husband is Gluten-free too, that's actually kind of cool, might make things a little easier to deal with? Not that I wish Celiac on anyone, but he is probably a great source of info for your new diagnosis. 

 

Best of luck on staying non- glutened! 

 

 

 

Oh, no!  I am so sorry to hear that you got glutened!  I hope you will feel better soon!

 

I can completely relate.  I'm still a newbie (dx in March).  I went to lunch a few days ago with a friend and I chose the restaurant.  They had a gluten free menu and I ordered a hamburger with just lettuce, tomato and no condiments.  My side salad had no dressing.  I joked about the bun being just okay and that I've come to like eating burgers wrapped in lettuce.  Within minutes, indigestion started.  We shopped afterwards at the mall and I felt fine.

 

That night I woke up with abdominal pain, nausea, "rock-feeling" in my stomach, and I couldn't sleep.  Got up to watch TV.  Barely functioned the next day with body aches added to my growing list of symptoms.  Slept better the next night and then had a headache all day was very cranky. My tummy issued persisted.

 

I wrote two reviews on "Find Me Gluten Free" and "Yelp".    I just nicely complained that the restaurant must have had cross contamination issues and the rest of my party enjoyed their food and service.  I warned those with celiac disease to be careful!

 

Would you believe the restaurant sent me a message?  Too sick and tired to deal with it now, but I will respond. Maybe I can help someone else from getting glutened!

 

So, as far as your boyfriend and mood swings?  I can't help you there.  I"m still trying to figure it out myself.  But the mood swings are real and they happen to my hubby too (he's been gluten-free for 12 years).  That's one of the symptoms where we stop and say, "I must have been glutened!"  (Besides our other gluten related issues.)

 

If I had eaten some offending food (e.g. garlic), it would be over in two days.  And that's what happened when I accidentally glutened myself in the first month or so of going gluten free.  Now, the reaction is much more severe!

 

I went on vacation to visit family, ate out a few times and did not get glutened (even at Wendy's).  So, I thought I was safe in my own hometown! In the future, I'm going to always talk to the manager (when I get enough courage to eat out again).

 

Hang in there!

Litty Love Newbie

I'm so sorry.  I think that it would help to get on as clean a diet as possible.  Also, get lots of rest, drink plenty of fluids, and do some mild exercise.  I think that you body is very busy with the restaurant contamination and it does't need anything else to deal with.  I can't imagine what would happen to me if I ate that much straight gluten.  No wonder you felt like crying.  I hope you feel better soon.

 

Thank you! Yes, exercise sounds good. I am now going to be extremely careful about my food choices. 


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



Celiac.com Sponsor (A8-M):



Litty Love Newbie

(((HUGS))) I am afraid that I don't know any tricks to make it pass faster.  :(  As the others said, I would keep you diet simple and clean and rest as much as you can....

 

Congrats on staying gluten-free for three years. You've done a great job! It's a shame someone mad a mistake on you... Hope you feel well soon.

Thanks!! (((HUGS))) back!

Litty Love Newbie

rest as much as you can and drink lots of water - you are sick, you would baby yourself if you had the flu, right?  my gluten after-effects stay for 2 weeks   :(  i have to keep reminding myself that i do NOT hate everybody it's just the gluten messing with my mind.  

 

((((hugs))))) i am 6 months without doing myself in <that's a record for me :)  so, i feel for you, sweetie!   feel better

 

Permission to baby myself, Score! haha. Yes, mine last about two weeks too! And then I can't really tell when my immune system gets back to normal, but it's a while. 

 

Haha, yes, I don't hate everyone, it's the damn gluten. My boyfriend is so tired of hearing me say " Gluten Free " But oh well. 

 

Good job 6 months! You got it! Thank you so much !

cyclinglady Grand Master

Thanks for your response!

 

Yes I have had a lot of hesitation when eating out, of course. Many people don't even know what it is! I understand that, I did't know much about it in the beginning either, but of course now it's a lot easier. But even 3 years in I still am finding out new things to avoid. 

 

I understand the rock feeling in the stomach, inability to sleep etc. Good for you for writing the reviews! I haven't heard of that website, but I'm going to check it out, hopefully it's in my city. I think it would be a great idea to come out with an app for the phone that lists Gluten Free places-- but with a level. Like, who has real options & knowledge about gluten, and who is just slapping the label on their menus for marketing purposes.

 

Then another problem is that when going to a restaurant sometimes the servers will think that they know gluten really well, but don't. One time I went to a really fancy restaurant, and one of the deserts that my date ordered was a "malt milkshake" I asked the server twice if it was gluten free...(Malt is one of the main things that's definitely not gluten free!) He assured me it was, and then even checked with the Chef too. They insisted it was gluten-free.  There is a small possibility that it was Malt derived from corn, and actually was gluten-free, but I kind of doubt they knew that much detail. So basically, I'm very skeptical now.

 

That's awesome they sent you a message back, were they apologetic? The restaurant I went to was very apologetic, got a refund immediately, and replaced my burger on the gluten-free bun. 

 

Your husband is Gluten-free too, that's actually kind of cool, might make things a little easier to deal with? Not that I wish Celiac on anyone, but he is probably a great source of info for your new diagnosis. 

 

Best of luck on staying non- glutened! 

It has been a much easier transition for me since my husband's gluten-free too.  I  learned to bake cookies, cobblers and cakes and prepare gluten-free meals beginning twelve years ago.    Eating at home has always been "safe" for the both of us.    

 

It is very cool that he is gluten free.  The best thing is that he completely knows how I feel (when I'm sick or grieving for lost foods).

 

I'm just laying around today (hosted a big party last night) and feeling awful from my glutening five days ago.  I'm feeling a bit crappy about the party too.  Since I was sick, I served lettuce wrapped burgers, baked beans, chips, fruit and salad.  I heard one of my guests complain, "Geez, I could have bought buns!"  My first reaction was anger ("Let it go", I told myself), later I heard my guest say, "This is pretty good".  I just didn't want to worry about cross contamination.  In the past, I'd serve my husband first.  But now who's going to eat the leftover possibly contaminated food? Plus, I have some pretty hefty family members.  Do they really need a bun?  For dessert, I served Costco gluten brownies and lemon cake (no complaints there) and sent home the leftover desserts. It still hurts that family members just don't get it.  But I don't see them everyday and I guess it will take a decade to bring them up to speed.  They'll have to learn or tough it out, since I typically host all the big holiday meals.  Hopefully, I'll have mastered gluten-free rolls and pies by then and they won't be able to guess.

 

I was just feeling good about my fracture healing and gearing up to swim and was walking everyday with my dog.  For five days, I have not exercised and have forced myself to do my normal "chores".  I worry about being about to eat out when my reaction has been so awful.  I had another luncheon date planned for next week, but I've invited them to come to my house.  I'll feel so much safer!

 

I haven't contacted Red Robin back yet.  Am waiting to feel better.  Will let everyone know the outcome.

 

Anyway, so much for the pity party.  My husband's a great guy.  I love him so much even after 25 years!  My kid's great too!

 

Have a better day!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    3. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,077
    • Most Online (within 30 mins)
      7,748

    Deb baker
    Newest Member
    Deb baker
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.