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Celiac disease question.....


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DD 18 was diagnosed 2 1/2 years ago. She had extensive damage to her villi that the drs are guesstimating will take 5-7 years to regenerate. Anyway, she's taking a couple of college classes this year so we can gauge how she's doing physically before she leaves for college this fall. There is a Subway store in the very small student union. We've noticed that if she spends any time in the student union or if someone sits next to her in class with a hot sandwich she becomes very ill as if she's ingested the gluten herself. Anyone else had this issue?

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I know that touching it can be a problem-playdoh is a big no no for some. But we have allergies to several foods and can't be in the same room. I would imagine that the same problem could exist in someone who was that sensitive. It's horrible to have to avoid foods though; they are everywhere! :grouphug:

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Medically, the reaction you are describing is impossible. (Not that I think you are lying about it, just that many people won't understand because medically it is 'considered' to be an impossible reaction to have).

 

However, I know of several who say that they have reactions simply by walking past a bakery. People who have that severe a reaction are considered 'super sensitive'.

 

For what it's worth, my daughter breaks out in a skin rash when she touches 'wet gluten' like in shampoos or lotions, etc. Medically, that's impossible as well but it happens. :glare: (It's not an allergy either, we had her tested for wheat allergies).

 

If you go to celiac.com and go to their message board section, scroll almost all the way to the bottom and you'll see a section marked for 'super sensitive'. There are many people on that board who will tell you that what you are describing is impossible, however, there are several who will know just what your daughter is experiencing and they may have some suggestions.

 

Good luck :)

Edited by Slipper
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Oops, wanted to add one more thing. I'm not sure what your stance is regarding medication, but my daughter takes medicine when she has a celiac reaction. Along with the other unpleasantness, she has horrible stomach cramps which are crippling. She takes hyomax/hyoscyamine to help with those. If you haven't asked your gastro about medication, there are things that can help her. Good luck with it all :)

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It just seems so illogical. She has two prescriptions she takes when she accidentally ingests gluten one for the severe pain and one that's basically a laxative. We've been warned not to even have dh hug her when he gets home from work-he's a Panera Bread manager:glare: I've been on the celiac.com site but hadn't looked at the super sensitive section. Again, thanks everyone. I really appreciate the input!!!!

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I was just diagnosed with Celiac, and have been researching the heck out of it. This is what I've learned. Gluten can be in the air for up to 24 hours after baking something with gluten in it. But I don't think that Subway bakes their bread on site. All in all, I think it is possible that it is affecting her.

 

As for medicine, it is true, some of them do have gluten in them. My Rheumy has had to change my meds around for Lupus because of this.

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I recall from my wheat-eating days that often the bottoms of Subway sandwich roll were liberally dusted with flour. If I was eating a sandwich, someone nearby could easily have inhaled particles of flour.

 

Now, is an inhalation reaction a possible celiac side effect? Some would say yes, others would say no, that's a celiac who also has an IgE-mediated (true allergic) reaction to wheat.

 

Even if she's tested negative before, it might be worth testing for an IgE-mediated allergy to wheat. (I'd just get the top 8 panel done.) If she tests positive, she can work with an allergist to develop an action plan for reactions.

 

Edited to add: by the way, is she cleaning off tables/chairs in the student union before using them? If they're outside a Subway, she should assume there's gluten on them.

Edited by jplain
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Medically, the reaction you are describing is impossible. (Not that I think you are lying about it, just that many people won't understand because medically it is 'considered' to be an impossible reaction to have).

 

However, I know of several who say that they have reactions simply by walking past a bakery. People who have that severe a reaction are considered 'super sensitive'.

 

For what it's worth, my daughter breaks out in a skin rash when she touches 'wet gluten' like in shampoos or lotions, etc. Medically, that's impossible as well but it happens. :glare: (It's not an allergy either, we had her tested for wheat allergies).

 

If you go to celiac.com and go to their message board section, scroll almost all the way to the bottom and you'll see a section marked for 'super sensitive'. There are many people on that board who will tell you that what you are describing is impossible, however, there are several who will know just what your daughter is experiencing and they may have some suggestions.

 

I love how you are framing all this. It's true that many people will tell you it's impossible and that it can't happen and etc... Well, 10 years ago it was "medically impossible" for overweight people to have celiac disease. A year later, with the new blood tests, they knew that wasn't true and now it's known that 20% or more of newly diagnosed celiacs are overweight. So what is "impossible" can change with new research and knowledge, etc... I get pretty irked when fellow celiacs don't support the super sensitives, who knows what may become known over the next few decades?

 

Also, airborn gluten is a medically documented problem. See the New England Journal of Med article here: http://www.nejm.org/doi/full/10.1056/NEJMc063112

 

Yes, they still think it's just because one swallows enough from what collects in the throat and nose and also gets pushed up from the lungs. But 10mg is known to be enough to trigger a reaction in some celiacs and 10 mg is tiny. It's an 18th of a teaspoon.

 

Can she study in the library or something? and why is someone bringing a sandwich to class? Food should not be allowed in a college classroom unless it's food prep class. Who knows how many allergies there could be in a given classroom population? That just seems sloppy to me.

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