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Sick Just By Touching Or Smelling Gluten


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#1 CassandraMae1985

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Posted 01 September 2010 - 02:37 PM

I just want to start out by saying hello to everyone. I'm new here and just signed up today.

My husband was diagnosed with Celiac Disease a few years ago and he has been sticking to the gluten free diet and i do all i can to make sure the gluten we have at home NEVER comes into contact with his food, pots, pans etc. but we have 2 small children who havent been showing any signs of having a gluten sensitivity (for now but we get their blood checked every few years) and so they have their snacks that contain gluten. My husband has noticed that if he even TOUCHES any crumbs or pieces of their snacks laying around (kids are messy) that he gets sick. Also if we happen to be over a family members house and they are cooking anything with gluten in it like pasta or bread, he also feels very sick. Is it possible for someone to be SO sensative to gluten that even if they DONT eat it and just touch or smell it they can get sick?

We are still fairly new to all of the rules since he was only diagnosed 2-3 years ago and ive heard it takes a long time to get everything perfect. He still isnt feeling 100% even though he's sticking to a gluten free diet and we are trying to figure out why. Thank you for listening everyone.
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#2 Lisa

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Posted 01 September 2010 - 03:10 PM

I just want to start out by saying hello to everyone. I'm new here and just signed up today.

My husband was diagnosed with Celiac Disease a few years ago and he has been sticking to the gluten free diet and i do all i can to make sure the gluten we have at home NEVER comes into contact with his food, pots, pans etc. but we have 2 small children who havent been showing any signs of having a gluten sensitivity (for now but we get their blood checked every few years) and so they have their snacks that contain gluten. My husband has noticed that if he even TOUCHES any crumbs or pieces of their snacks laying around (kids are messy) that he gets sick. Also if we happen to be over a family members house and they are cooking anything with gluten in it like pasta or bread, he also feels very sick. Is it possible for someone to be SO sensative to gluten that even if they DONT eat it and just touch or smell it thay can get sick?

We are still fairly new to all of the rules since he was only diagnosed 2-3 years ago and ive heard it takes a long time to get everything perfect. He still isnt feeling 100% even though he's sticking to a gluten free diet and we are trying to figure out why. Thank you for listening everyone.



Welcome CassandraMae! You have found yourself in a very good place! :)

People with Celiac Disease have to INGEST gluten for it to be an issue. That reaction takes place in the small intestines, after being consumed. There are people who have a "gluten allergy" in addition to Celiac Disease, but that might result in allergic-type reactions.

Loose flour floating around (as in flour dust) can/may get into your mucus of your nose or mouth and it can be swallowed and tracked into the intestines....a possibility.

If, your husband has Celiac, perhaps it might be a psychological reaction to the physical presence of gluten. It can happen. :)

But touching gluten and getting a reaction, without having a topical allergy, would be doubtful.
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Lisa

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#3 CassandraMae1985

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Posted 01 September 2010 - 04:02 PM

Welcome CassandraMae! You have found yourself in a very good place! :)

People with Celiac Disease have to INGEST gluten for it to be an issue. That reaction takes place in the small intestines, after being consumed. There are people who have a "gluten allergy" in addition to Celiac Disease, but that might result in allergic-type reactions.

Loose flour floating around (as in flour dust) can/may get into your mucus of your nose or mouth and it can be swallowed and tracked into the intestines....a possibility.

If, your husband has Celiac, perhaps it might be a psychological reaction to the physical presence of gluten. It can happen. :)

But touching gluten, without having a topical allergy, would be doubtful.


Wow thank you SO much :) I'll let my husband know this.
Im so glad i found this site!
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#4 dilettantesteph

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Posted 01 September 2010 - 07:06 PM

Some celiacs are more sensitive to low levels of gluten than others. My son and I are both very sensitive. We couldn't get better until our whole household went gluten free. The other members of our household were very careful, certainly more careful than young children (sorry young children) and we still kept getting sick. Many celiacs do fine with a mixed household, but more sensitive ones like my son and I can't. It somehow gets in there. If it is inhaled, it can get into the stomach. If it is touched, it can get into the mouth if you bite nails or something. I can't tell you how, I just know that it makes me sick. I have also gotten very sick kissing my daughter after she ate gluten and forgot to brush first. You husband might be having problems with that too.

Sometimes less sensitive people have told me that certain foods etc. are fine, but they really weren't fine for me. We are not all the same. It is important to listen to what your body is telling you.

I was also told several times on this forum that it was psychological, but I don't think it is, and neither does my gastroenterologist.
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#5 gary'sgirl

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Posted 01 September 2010 - 10:10 PM

I just wanted to say that I agree with Dilettantesteph. Some people really are more sensitive to gluten than others. When I was very new to this - only a couple of months into the diet, I didn't yet know how sensitive people could be. One night my daughter (who also has Celiac) was playing with a neighbor friend and I looked over to see what she was doing and saw her take a bite of a cookie that the little girl she was playing with had given her. I went over to her and told her that this cookie was the kind that would make her sick. I made her put it down and when I brushed off her hands some crumbs flew up in my face. I didn't think anything of it at the time, but within a half hour I started getting the dreaded stomach cramps etc... Since then I have found I and one of my daughters with Celiac react to much less gluten than most do - even just touching a counter that someone else touched that had gluten on their hands and then putting something in our mouth with that hand, has caused a reaction.

Not to say that what Lisa said about it being a psychological thing could never happen, because I'm sure that it does sometimes, but some people really are a lot more sensitive than others. I think you just have to be discerning and look a the individuals personality and whether or not the person tends to have physical reactions to emotional things. I just say that, because even before I found that I was "ultra" sensitive people would act like I was being crazy about how careful I needed to be and it made me feel even more alone with this health issue and anyone dealing with their health really just needs to feel supported. - Which I think you are doing, because you obviously care enough about your husband by trying and understand this better and help him. :) You're a good wife!
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#6 dilettantesteph

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Posted 02 September 2010 - 05:06 AM

Nicely stated.
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#7 lovegrov

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Posted 02 September 2010 - 11:02 AM

I think what Lisa was saying in essence is that your husband will not absorb gluten through his skin. Yes, if he gets crumbs on his hands and then transfers that to his mouth, he could get sick. But just touching it, no.

richard
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#8 CarolinaKip

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Posted 02 September 2010 - 12:36 PM

I just want to start out by saying hello to everyone. I'm new here and just signed up today.

My husband was diagnosed with Celiac Disease a few years ago and he has been sticking to the gluten free diet and i do all i can to make sure the gluten we have at home NEVER comes into contact with his food, pots, pans etc. but we have 2 small children who havent been showing any signs of having a gluten sensitivity (for now but we get their blood checked every few years) and so they have their snacks that contain gluten. My husband has noticed that if he even TOUCHES any crumbs or pieces of their snacks laying around (kids are messy) that he gets sick. Also if we happen to be over a family members house and they are cooking anything with gluten in it like pasta or bread, he also feels very sick. Is it possible for someone to be SO sensative to gluten that even if they DONT eat it and just touch or smell it they can get sick?

We are still fairly new to all of the rules since he was only diagnosed 2-3 years ago and ive heard it takes a long time to get everything perfect. He still isnt feeling 100% even though he's sticking to a gluten free diet and we are trying to figure out why. Thank you for listening everyone.



I have Celiac and found out I have a wheat/barely allergy also. I prefer to not touch any gluten at all. When I do, I don't feel sick like being glutened,but I don't feel well. My skin get's icthy etc, like allergy reactions. Has he ever had food allergy testing? I was eating things that caused me pain, that I found out I'm allergic to. My reactions were all gastro ones to these foods.
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How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in your life you will have been all of these.
George Washington Carver


Blood work positive 4/10
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#9 Gemini

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Posted 02 September 2010 - 01:20 PM

I just wanted to say that I agree with Dilettantesteph. Some people really are more sensitive to gluten than others. When I was very new to this - only a couple of months into the diet, I didn't yet know how sensitive people could be. One night my daughter (who also has Celiac) was playing with a neighbor friend and I looked over to see what she was doing and saw her take a bite of a cookie that the little girl she was playing with had given her. I went over to her and told her that this cookie was the kind that would make her sick. I made her put it down and when I brushed off her hands some crumbs flew up in my face. I didn't think anything of it at the time, but within a half hour I started getting the dreaded stomach cramps etc... Since then I have found I and one of my daughters with Celiac react to much less gluten than most do - even just touching a counter that someone else touched that had gluten on their hands and then putting something in our mouth with that hand, has caused a reaction.


I have gotten sick from a small amount of crumbs that made it into my mouth, obviously, because it's the only way that a Celiac reaction can occur. It happened almost exactly the way you described your experience. No matter what way you are exposed, you would have to get enough into your GI tract to cause a reaction. That's why washing your hands is so important and not just for avoiding gluten.

I also have psychological reactions to smells. The offending gluteny smell makes me headachy and somewhat nauseous but that goes away quickly once the offending agent is removed. This is not a true reaction and should not be confused with one. I think it's just the bodies way of protecting someone who may have an intolerance or allergy to something. I think it's funny because I know my brain is reacting but not my GI tract and goes to show you how amazing the human body is. I am not afraid of being around gluten or of touching it because I know you have to ingest it for the small intestine to be
compromised. If a person reacts topically, that's an allergy and a different animal.

If people could become glutened that easily, I would think that life would become very difficult and they wouldn't be able to leave the house. Gluten is everywhere and, as long as you know how the disease process works, you should be fine. Small children can be difficult because you never know what they have been putting in their mouths. Something else may have caused them to react and it may have nothing to do with gluten. It is very important to learn as much about this disease as possible because, as I have found, most people have no clue, including the medical profession...which is annoying and discouraging.
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#10 gary'sgirl

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Posted 02 September 2010 - 06:53 PM

I have gotten sick from a small amount of crumbs that made it into my mouth, obviously, because it's the only way that a Celiac reaction can occur. It happened almost exactly the way you described your experience. No matter what way you are exposed, you would have to get enough into your GI tract to cause a reaction. That's why washing your hands is so important and not just for avoiding gluten.


Yes. Exactly!
This is where I think some people are more, and some people are less sensitive - some will react to such small amounts of CC that you can't see it, while others seem to not react until they ingest a little more.
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#11 BeckyWJ

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Posted 03 September 2010 - 12:15 PM

My 10 yr old starts feeling sick if she walks in the flour aisle at the grocery store (and she didn't even realize she was in the flour aisle...we're more careful now). I let her brother make cookies with wheat flour once and she had a reaction. Whether her reactions were caused by Celiac or allergy, I don't know, but I don't doubt that they were real.
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#12 ravenwoodglass

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Posted 03 September 2010 - 02:20 PM

This is where I think some people are more, and some people are less sensitive - some will react to such small amounts of CC that you can't see it, while others seem to not react until they ingest a little more.

Yes and there is also a difference I think when folks have more autoimmune impact in organs other than just the gut. It takes much more gluten to damage the villi than to start the antibody autoimmune response, IMHO. I do not for a minute doubt those who react to very small amounts of gluten from any source whether breathed in or injested or absorbed into mucous membranes from rubbing your eyes or nose etc.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#13 dilettantesteph

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Posted 04 September 2010 - 05:07 AM

Yes and there is also a difference I think when folks have more autoimmune impact in organs other than just the gut. It takes much more gluten to damage the villi than to start the antibody autoimmune response, IMHO. I do not for a minute doubt those who react to very small amounts of gluten from any source whether breathed in or injested or absorbed into mucous membranes from rubbing your eyes or nose etc.


I agree with that based on my experience.
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#14 gary'sgirl

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Posted 04 September 2010 - 09:43 AM

Yes and there is also a difference I think when folks have more autoimmune impact in organs other than just the gut. It takes much more gluten to damage the villi than to start the antibody autoimmune response, IMHO. I do not for a minute doubt those who react to very small amounts of gluten from any source whether breathed in or injested or absorbed into mucous membranes from rubbing your eyes or nose etc.

I agree too. :D
I know that I have reacted through these types of exposures and I think that my children have too.
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#15 missingtortillas

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Posted 05 September 2010 - 08:02 AM

I can't use my BIG SEXY hair spray because I get really sick after. I didn't realize the connection until I recently went gluten free. In January I started a food journal and decided to add in details about how I felt when I felt icky. Low and behold GLUTEN was the underlying cause. Guess what's in my hairspray? That's right, Wheat. Sprayed and breathed in heavily. Now I flat iron or let it dry natural. I don't use any product in my hair because I have a bad habit of twirling my fingers in my hair and then without realizing it, I put my nails/fingers in my mouth. I also lick my lips a lot so I have to be careful what I touch and if I touch my lips! It's a real self examiner when your finding the source of being glutened. As I realized, it's me hurting myself with my nervous habits. I'm still very new to all of this and have a lot to learn as well.
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Missing Tortillas
I've been Gluten free off and on in January and 100% since June 2010. My 9 year old daughter's GI doctor called and confirmed biopsy is positive for Celiac on Wednesday, September 8, 2010.


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