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Why Such Widely Different Reactions? Is This Common?


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10 replies to this topic

#1 birdie22

 
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Posted 15 May 2013 - 04:03 PM

Just a bit of background... 1. I've been gluten-free since Nov 2011 2. My celiac panel prior to going gluten-free was neg so I've been labeled NCGI 3. I live in a non gluten-free household but have my own toaster, colander, labeled condiments, etc and dinner is always gluten-free for everyone So here's my issue. About a month ago in a moment of weakness and doubt I decided to eat 5 Wheat Thins curious to what my reaction would be. It was a late afternoon "snack" so my stomach was quite empty and I anticipated having an immediate reaction of my usual symptoms...massive bloating, nausea, heartburn. While I did think I bloated a bit, it wasn't distinct and no other symptoms came along, nor did I get a migraine or canker sore days later, which again I would've expected. I was surprised that it didn't amount to much. Fast forward to tonight when I had for dinner leftover gluten-free spaghetti with a bit of butter (my own, no cc), and a sprinkle of Parmesan. Within 30 I was so bloated that I thought I'd vomit. I took a phazyme and that helped greatly. I had the same reaction with that same batch of spaghetti a few days ago (the day it was first cooked). That time I had eaten it with red sauce and a side salad with ranch and I really wasn't certain the culprit. But given the same reaction tonight it must be that pasta. It's only corn flour and water. I eat corn and corn products regularly without issue. The only thing that I can think of as to why is that hubby cooked the pasta in a pot that he had used to cook Kraft Mac n cheese for the kids a few days prior. The pot was hand washed in hot soapy water. The pot is rather new, non stick, but has a glass lid (with a seem between the glass and the metal rim) so I'm aware that this could be a source of cc. So if I did get cc exposure in the spaghetti and therefore my reaction tonight and the other night was a glutening, the why such a non response to the Wheat Thins which would've been far more gluten? Is that possible? Actually while writing this I'm reminded that back in Feb I was accidentally glutened at a hotel restaurant. I had ordered a gluten-free flatbread pizza and I had already eaten 1/3-1/2 of it when the waitress came running out to tell me she made a mistake and gave me a regular version. Again, I would've expected the worst bloating, nausea, migraine, heartburn, canker sore, etc and yet only had a minor bloat. What gives? In both case of full on gluten consumption had I not known I was eating gluten I might not even noticed the bloating at all. Given my non diagnosis it just gives me a bit more doubt.
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#2 Deaminated Marcus

 
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Posted 15 May 2013 - 04:48 PM

I went through the same kind of experience.

2 months after going gluten free I had some Christmas fruit cake and 2 days later Wham with pain and fatigue.

But when I was gluten free the pain came back.

I'd get bloating from eating rice sometimes but not sure if it was the onions with the rice or dates I ate for dessert.

I also got bloating from milk.

 

So as you can see it's not only gluten that can be a problem.

I went back on a gluten challenge to get tested and I had procrastinated to do so for fear of the pain but it wasn't as bad as I had anticipated so that's why I'm getting tested again.


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#3 birdie22

 
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Posted 16 May 2013 - 07:01 AM

I appreciate the response. Early on in this journey I definitely was aware that I could react to other things. But having been gluten-free for well over 1.5yr, I definitely know that I don't have any other food sensitivities. My reaction last night after the pasta was very distinct and very much in line with the experiences I had prior to being gluten-free. Had I reacted the same way to the Wheat Thins or the accidental pizza glutening (I'm still so mad at that hotel!), I wouldn't be overthinking this at all. But the somewhat lack of a response to the true glutening and yet bigger response to what could only be cross contamination just has me baffled.


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Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

#4 birdie22

 
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Posted 18 May 2013 - 03:40 PM

Is there anything else I should be considering? Or should I out doubt to rest and just accept that reactions can and will be all over the spectrum? Can anyone relate?
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Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

#5 Brandiwine

 
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Posted 18 May 2013 - 04:29 PM

The only thing I can come up with is that maybe you didn't get those immediate reactions but it could still be damaging your body. I know that if I eat gluten pizza or wheat thins ill be down for a week, I'm sorry I can't be more help with this. Did you have red sauce in the spaghetti leftovers? Maybe it's tomato some others do have issues with nightshades.
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Vegetarian, Gluten Free diet since 03/2013, sensitivity to raw onions, soy, allergic to Cinnamon


#6 birdie22

 
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Posted 19 May 2013 - 05:45 AM

No no red sauce. It was butter only.
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Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

#7 Brandiwine

 
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Posted 19 May 2013 - 06:15 AM

Do you think it could dairy? You had parm the first go around right? And butter the second....
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Vegetarian, Gluten Free diet since 03/2013, sensitivity to raw onions, soy, allergic to Cinnamon


#8 birdie22

 
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Posted 19 May 2013 - 03:38 PM

I had considered that but I'm a daily dairy user and don't seem to have issues otherwise. This morning I had cereal with skim milk w/out any GI symptoms. Most days I have some dairy in my diet...milk, ice cream, cheddar cheese, greek yogurt. 


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Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

#9 Brandiwine

 
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Posted 19 May 2013 - 05:26 PM

Definitely have me stumped! I know I'd be sick if I had wheat thins or pizza, and the spaghetti thing is beyond me unless it wasn't the spaghetti that made you sick.
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Vegetarian, Gluten Free diet since 03/2013, sensitivity to raw onions, soy, allergic to Cinnamon


#10 pricklypear1971

 
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Posted 19 May 2013 - 06:23 PM

I think of you know you have a reaction to gluten (based on your experiences over 1 1/2 years ago), that you shouldn't question it now.

Many people have posted here saying they've been glutened, no immediate reaction....but odd things started happening they could recognize only retrospectively. Most say eventually they begin to exhibit a more immediate classic reaction, if gluten exposure continues.

The fact that you're reacting to random things that you didn't react to before is to me, is a symptom. Your body is protesting. Just because the reaction isn't what you expect (immediately following gluten) doesn't mean it isn't gluten related.

I had a rash that was present 24/7 for years - didn't rage or flare more the second I ate gluten. It just was....
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#11 mommy2krj

 
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Posted 26 May 2013 - 06:35 AM

Hugs. We are just learning that we're going to have to start going gluten free, so I honestly know nothing about that aside from the reactions my youngest son is having.

 

That said....I'm kind of lactose intolerant. I can drink milk and eat cheese and yogurt but whatever the process is for making ice cream I get crazy, horrible stomach pains any time I eat it. I haven't tried making my own (some day I will get around to it!) and I have narrowed down the fact that it's more the dry milk solids that get me. I can't drink prepackaged hot chocolate without the same exact symptoms but I can drink homemade hot chocolate that doesn't have the dry milk in it. It's weird. And I will get around to making my own ice cream as I miss eating ice cream! :)

 

Good luck figuring this all out. We're pretty new to all this....and I'm just starting out with all the symptoms and knowing what to look out for. Such a challenge!


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