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Glutened...first Time In 3 Years!


Litty Love

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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:

 

 


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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. 


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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!

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      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea." CBC = Complete Blood Count. This is the typical bloodwork most people would have done routinely with an annual wellness checkup. I would include things like iron levels, various blood cell counts including reds and whites and other infection fighters. CMP = Complete Metabolic Panel. This would measure things like blood sugar, kidney and liver function, plasma proteins and various enzymes. Non cellular things that the body produces. Also typical of an annual wellness check. Have you tried cutting out dairy and oats? These two are the most common cross reactors in the celiac community. I know it must be tough trying to get adequate calories and nutrition when you are pregnant while at the same time eliminating foods that are good sources of those things.
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      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
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      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
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