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Hey everyone!

 

I have been strictly gluten and casein free since about 2011, and have been pretty good about avoiding reactions. Whenever I did get exposed in the past, I've noticed that my body reacts a little differently each time, as my body has had more time to heal from my pre-diagnosis self.

 

Recently, when I was hungry at work and desperate for food (yet broke), I had a Starbucks oatmeal. So, uh, needless to say, this was a huge mistake. I was able to recover from the worst of the symptoms fairly quickly (inflammation throughout the body but central to the abdominal cavity, joint pain, severe mood disorders, pain, etc), I still am struggling with insomnia, itchiness without rashes, fatigue, stomach pain, and more recently, loss of appetite and inability to digest food (it kinda just sits there for hours and my stomach is yelling in protest the entire time). 

 

Is this normal, to experience said symptoms for so long after an exposure? I feel silly for having to ask, but so many people around me ask, "still?!?!" and I hate to say it, but it makes me doubt myself... I mean, I can't argue with whatever my body is telling me, but... this is normal, right?

 

How do you cope with your symptoms? I've been taking ibuprofen for inflammation, benadryl at night for the itchiness and insomnia, caffeine in the morning, water water water, and 5,000 mg of L-glutamine (as directed by a chiro). I've been meaning to buy more of a plant based pro-biotic as well. 

 

Any ideas? Hugs? 

 

Edit: Maybe it was more than 2 weeks.... aaaghhhh I can't remember

Edited by JyotsnaIndu

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Hey everyone!

 

I have been strictly gluten and casein free since about 2011, and have been pretty good about avoiding reactions. Whenever I did get exposed in the past, I've noticed that my body reacts a little differently each time, as my body has had more time to heal from my pre-diagnosis self.

 

Recently, when I was hungry at work and desperate for food (yet broke), I had a Starbucks oatmeal. So, uh, needless to say, this was a huge mistake. I was able to recover from the worst of the symptoms fairly quickly (inflammation throughout the body but central to the abdominal cavity, joint pain, severe mood disorders, pain, etc), I still am struggling with insomnia, itchiness without rashes, fatigue, stomach pain, and more recently, loss of appetite and inability to digest food (it kinda just sits there for hours and my stomach is yelling in protest the entire time). 

 

Is this normal, to experience said symptoms for so long after an exposure? I feel silly for having to ask, but so many people around me ask, "still?!?!" and I hate to say it, but it makes me doubt myself... I mean, I can't argue with whatever my body is telling me, but... this is normal, right?

 

How do you cope with your symptoms? I've been taking ibuprofen for inflammation, benadryl at night for the itchiness and insomnia, caffeine in the morning, water water water, and 5,000 mg of L-glutamine (as directed by a chiro). I've been meaning to buy more of a plant based pro-biotic as well. 

 

Any ideas? Hugs? 

 

Edit: Maybe it was more than 2 weeks.... aaaghhhh I can't remember

 

Hi there, and Welcome to the Forum.

 

Reaction times really do go across the board for different people.  For me, I will start cramping within an hour of exposure and not get through the entire cycle for 2 1/2 - 3 weeks.  Some suffer overnight and are done.  I also believe the level of exposure makes a difference in severity of some of the symptoms.

 

Good luck healing,

 

Colleen

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Ugh, glutening!   It sets me back for a week or so.  Everyone is different.  My reactions have been much more severe since my diagnosis (anemia was my main symptom).  I hope you feel better soon.

 

I just sent my hubby off to work and made sure he had a Lara bar and a fruit leather on hand.  You never know when you are going to get hungry.  Keep shelf stable gluten-free goodies in your purse.  At best, I'll buy a coke and a bag of potato chips which prior to my diagnosis, I never had soda, but now I need some sort of calories and a plain ice tea won't cut it.  I can always pop into a grocery store and pick up a banana (doesn't even have to be washed).  I keep a tiny ice chest in my car (something I started doing when my daughter was a baby) for items like carrots and fruit that need to be kept cool.  Planning is critical!

 

Take care! 

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Ah - as it turns out, this glutening was exactly 1 month ago. 

Perhaps I'm more sensitive to certain foods in my weakened state. Or maybe it's all of the soy I've been having. Regardless, what the frizzle is going on -_- I'm done. 

 

Thank you for the advice, everyone.

 

Hi there, and Welcome to the Forum.

 

Reaction times really do go across the board for different people.  For me, I will start cramping within an hour of exposure and not get through the entire cycle for 2 1/2 - 3 weeks.  Some suffer overnight and are done.  I also believe the level of exposure makes a difference in severity of some of the symptoms.

 

Good luck healing,

 

Colleen

The level of exposure has been true for me - ugh, this must have been oatmeal made of pure wheat then, ha. 

 

 

Ugh, glutening!   It sets me back for a week or so.  Everyone is different.  My reactions have been much more severe since my diagnosis (anemia was my main symptom).  I hope you feel better soon.

 

I just sent my hubby off to work and made sure he had a Lara bar and a fruit leather on hand.  You never know when you are going to get hungry.  Keep shelf stable gluten-free goodies in your purse.  At best, I'll buy a coke and a bag of potato chips which prior to my diagnosis, I never had soda, but now I need some sort of calories and a plain ice tea won't cut it.  I can always pop into a grocery store and pick up a banana (doesn't even have to be washed).  I keep a tiny ice chest in my car (something I started doing when my daughter was a baby) for items like carrots and fruit that need to be kept cool.  Planning is critical!

 

Take care! 

The ice chest is a great idea!! I'll just have to keep on truckin', go on a "super clean" version of my diet, and deal with it. 

 

yep - 14 days for me.  it will take a 24-48 hrs to fully hit me but then it's gonna hang around for 2 weeks.  i'm currently counting the days from a 'mystery' glutening.  rash is finally going away.  sheesh......  :mellow:

I hope you feel better soon! Stay strong! D:

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Just wanted to mention that some Celiacs cannot tolerate oats - it gives them the same reaction as if they ate gluten.  My uncle and my mother both fall into this category.  I haven't touched them myself since going gluten-free.  So if you're also intolerant of oats you may be experiencing more of a full-serving-of-gluten reaction rather than a minor cross-contamination reaction (if that makes sense).

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Just wanted to mention that some Celiacs cannot tolerate oats - it gives them the same reaction as if they ate gluten.  My uncle and my mother both fall into this category.  I haven't touched them myself since going gluten-free.  So if you're also intolerant of oats you may be experiencing more of a full-serving-of-gluten reaction rather than a minor cross-contamination reaction (if that makes sense).

Yeah, that makes sense. When I first went gluten free,  I read everywhere that oats were bad and hard for the body to process when in recovery mode... So, this is the first oatmeal I've had in ages as well. I can handle gluten free granola, but, eh. I will continue to stay far, far, away from anything oatmeal. 

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You work for Starbucks, right? I have not ordered anything other than brewed coffee (and brought in my own soy milk) since my dx. Are cafe mochas with soy, gluten free? What about cross contamination? I have done some research, but I get conflicting answers.

I sure like meeting up with friends for coffee.

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You work for Starbucks, right? I have not ordered anything other than brewed coffee (and brought in my own soy milk) since my dx. Are cafe mochas with soy, gluten free? What about cross contamination? I have done some research, but I get conflicting answers.

I sure like meeting up with friends for coffee.

I asked during Christmas if the sugar-free mocha at Starbucks was gluten free and the cashier said she thought so but she'd ask.

 

Just so happens the barista she asked just happened to have celiac and told me that she actually called corporate and couldn't get a straight answer so she suggested that I avoid it. I just always end up with a plain black coffee with room for milk and watch my family suck down a gazillion yummy sugary calories. Oh well, I am feeling better every singe day and that's all the incentive I need to JUST SAY NO!!!

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You work for Starbucks, right? I have not ordered anything other than brewed coffee (and brought in my own soy milk) since my dx. Are cafe mochas with soy, gluten free? What about cross contamination? I have done some research, but I get conflicting answers.

I sure like meeting up with friends for coffee.

 

Cafe mochas alone are *technically* gluten free (meaning, there are no ingredients that say "wheat", and I have never had a reaction, but that's me). With that being said, this is only if you aren't sensitive to cross contamination. The dishes are all washed together. Sadly, not everyone has the same care level as others when it comes to wheat allergies. I have actually gotten very upset with some fellow employees over dishes. Ideally, all dishes are washed and scrubbed in relatively fresh water, rinsed, then run through a dish washer with sanitizer/disinfectant and soap. 

 

I have had multiple reactions to the soy. I have only had one other person confirm that she has had a reaction. I did two weeks of research because corporate doesn't give a straight answer. I think it is provided by Eden Food. On the website for the Eden Food soy, they state that only the unsweetened soy is gluten free. Unfortunately, Starbucks uses the sweetened kind. 

 

I would suggest sticking with coffee (iced coffee, however, is made in pitchers that can be exposed to cross contamination), Clover brewed coffee, espresso, any hot tea (ask for them to use a glove to grab your tea bag instead of the tongs!!), or americanos (which are espresso and hot water). I usually like to get the "normal" beverages as coffee... so, if you miss the peppermint mochas, I'll have a coffee with peppermint and mocha in it, with no creamer. It tastes really good, actually!! If you really miss cream, ask for a Starbucks double shot (ask for them to make it directly in your cup) - espresso, classic syrup, ice, and then you can top it off with your own creamer. Soooo delicious. 

 

I made a post about Starbucks' new drink in a different forum on this site -You can always contact me directly if you'd like :)

 

Thanks again for the help everyone!! 

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Yeah, what notme! said is pretty much what happens to me too. around 16 hours for the reaction to hit me, and then it lasts about a week and a half if it's a normal reaction from cross contamination or something.

 

if it's from directly eating something (like, if i drank a beer) my reaction would be around 3 weeks. I only did this at the very beginning of my onset of celiacs, so i can't tell you exactly what it would be now. but i imagine it would still be around 3 weeks, with that first week sucking a ton. the first two days i would be absolutely dying

 

So... reactions can be pretty long =\

 

Fortunately, the more careful you are, the reactions that do occur seem to be less severe because it's just a small bit of gluten that managed to slip in :)

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Ugh I know that this should eventually go away, but I'm so, so tired of being in pain and having stomach issues (including loss of appetite). I don't have insurance until February... should I be concerned that it has been over 4 weeks and go to a nurse practitioner in a take care clinic? I don't expect any magical fixes, or anything other than "just make sure you drink plenty of fluids" but then again, I want a magical cure. 

 

PFFF. 

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Are you sure you still are not being glutened in some way? Cross contamination?

For some weird reason, I have developed an intolerance to Xanthan gum which is in almost all commercial gluten-free breads and other products. I am doing well using guar gum. I also have issues with quinoa and gluten-free oats. All three of these things give me the same glutened type of reaction. My reaction to gluten and these three items are so different from my other food allergies. Any chance that you are reacting to something other than gluten?

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I don't know, I hope not. I'm eating only at home, making my own food, and I have a 100% gluten-free kitchen. I'm thinking it might be because I had some gluten-free english muffins about 3 weeks after I was exposed to gluten and then found out they had dairy in them. I'm also strictly dairy free, by the by. I also have cut eggs and soy out of my diet because the soy is an inflammatoy thing and I'm always on and off about eggs. For some reason I feel like my diaphragm is agitated, and even laughing hurts for some reason. That's what concerns me. :/

 

Or maybe today I'm just emotionally spent and everything seems hopeless (I was so optimistic yesterday, DRAT)

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