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Do Celiac's Have An Odor?
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The other day my boyfriend said he can tell when I have been glutened because I admit a distinct odor through my skin. He said it's NOT foul smelling but more medicinal. Has anybody else been told that?

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Could you do us dinosaurs a favor and not make the font so small so we can't read it without our "cheaters"? :lol: Thanks, honey!

Okay, to answer your question: Nope.

So, I asked the hubs.... and he said " huh? No!"

and I honestly cannot imagine how this would provoke a "medicinal smell" by emitting it through your skin, BUT it is very interesting!! As the wife of a chemist, I am intrigued.

For it to be an exact science of course, he would have to sniff you daily for weeks, reporting what he smells, then without his knowledge, you gluten yourself and as the days pass, he would continue to sniff you and report what he smells.

In other words, a controlled study would be your best bet. He may think you smell differently, because he knows you've been glutened. See what I mean? Maybe he is biased based on what he knows?

not that he is lying, of course, but because he may "anticipate" a change?

It would only be a valid response if there is control in the experiment....so......who wants to try it? (not me!)

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Could you do us dinosaurs a favor and not make the font so small so we can't read it without our "cheaters"? :lol: Thanks, honey!

Okay, to answer your question: Nope.

So, I asked the hubs.... and he said " huh? No!"

and I honestly cannot imagine how this would provoke a "medicinal smell" by emitting it through your skin, BUT it is very interesting!! As the wife of a chemist, I am intrigued.

For it to be an exact science of course, he would have to sniff you daily for weeks, reporting what he smells, then without his knowledge, you gluten yourself and as the days pass, he would continue to sniff you and report what he smells.

In other words, a controlled study would be your best bet. He may think you smell differently, because he knows you've been glutened. See what I mean? Maybe he is biased based on what he knows?

not that he is lying, of course, but because he may "anticipate" a change?

It would only be a valid response if there is control in the experiment....so......who wants to try it? (not me!)

Not me either,, I will take the word of the fool ,, I mean test subject,, that agrees to perform that controlled study :rolleyes:,

I have known people who drink a LOT of alcohol to have the odor of alcohol come thru their skin after a particularly rough binge .

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HAHAHAHAHAH!!!!!!

I do know that in my experience living with a man for six years, he would most definitely smell

different when he was sick, like with a cold or something. And my mother always said she could

smell when we were sick. It's not out of the realm of logic that the chemistry in your body

would change enough when glutened to affect your odor. Especially to someone with a very

sensitive sniffer, I smell things most people don't notice. Interesting topic!

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I agree on the "alcohol smell" after a binge. No question!! I agree on the "sick smell" too. That's perspiration coming out your pores, right?

but if we're gonna ooze after a glutening, wouldn't we smell like a bagel??

Just sayin.

I can smell things no one else can, too. Really, I have "super nose" (the hubs thinks I am nuts sometimes.) but I am "fine tuned".... same with taste and hearing. Super Sonic.

That said, I bet I may probably smell like OTHER things besides "medicinal" after a gluten hit.....because you can bet I am going to probably heave or be in the loo for a bit.... :ph34r:

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People who smoke certaintly have an odor. Some people smell like cinnamon too. Don't ask me why. Rose water is medicinal right? So maybe we smell like rose water. Otherwise I can't imagine why we would have a particular odor, so there, says FP.

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Well, haven't a lot of people reported hormone disruptions from glutening? Night sweats,

hot flashes, booby tenderness, cycle issues... I have read of pregnant women smelling

different, as reported by their husbands or mothers. So why not a glutening? Nobody

would ever fund the study of something like this, but it sure is interesting!

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My hubs' aunt said she could smell people who had cancer :blink:

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I also have an extra sensitive sniffer ,,,

Maybe we should have a study done to see if celiacs have more sensitive sniffers then non celiacs ? That could be fun or not :P (depending on the smells involved :lol:)

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I am à sensitive sniffer :)

I can sometimes smell when a diabetic is out of whack. It is the classic sweet pear drop smell that people say is on the breath, but I smell it on the skin. I had a boyfriend with diabetes, but I had to pretend it didn't happen, it used to annoy him that I knew. Mind you, it annoyed me that he used to get drunk and expect his mates or me to get him out of fits. Hence ex.

Another friend was freaked out when I asked if he was diabetic. Turned out he was prediabetic.

Not sure about celiac. I think there is a general sick smell.

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I also have an extra sensitive sniffer ,,,

Maybe we should have a study done to see if celiacs have more sensitive sniffers then non celiacs ? That could be fun or not :P (depending on the smells involved :lol:)

The startled skunk walking by the open window in summer just about kills me. <_<

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Eat some chocolate an smell the skin on your arm, pretty amazing !

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I've often wondered this. I wonder why we don't get dogs to diagnose all sorts of diseases for us, we trust them to find bombs and drugs.

I personally haven't noticed a celiac odor, but have wondered a lot if it's contributed to my own pretty strong BO.

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We had a dog that loved everybody. She would growl at anyone who had cancer (most times pre diagnoses).

I honest to God can smell ice (ice rink ice).

A lot of us mid westerners can smell spring. (it smells like black dirt and it is not the first day of uncovered ground from snow melt)

The boyfriend just has a really good sniffer, very well in tuned to you. He will probably know your pregnant before you do.

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My cat knew I was pregnant and went bananas.

Mind you, cats are not much good for training :)

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I too have a sensitive nose. As a mom to 3 boys and a red neck husband, I consider this to be a curse. LOL

I'll have to pay attention to that. I know my smells change throughout the month and when I am unwell. I've never noticed a gluten smell. Neat.

And yeah, why don't they use dogs for cancer sniffing. It's got to be cheaper than MRI's and tonnes of tests.

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My hubby has a sensitive nose. If I've spent several days in bed, he says the room begins to have "that smell". He also says it's not particularly bad, but stale. The skin is an organ and I don't think it's outside the realm of possibility that we give off an odor when our organs are taxed. He hasn't really said that much since I've been gluten-free.

Cali

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    • That was my story Rhian and that of many others here no doubt. I spent years on each and every anti-depressant under the sun whilst telling doctors that I thought something was physically wrong. I found out for myself in the end, so don't be afraid to back your own judgment, ultimately you are the world's leading expert on yourself   But, whilst the diet change made a massive difference to my mood, it doesn't preclude me from suffering from depression. I think in some ways all those years have made it a part of me.  I chose to go back on gluten for testing and it wasn't particularly pleasant. At the end of it I had a negative biopsy, although such was my reaction that the GI told me to avoid gluten for life. So I'm NCGS, or coeliac if I'm in a restaurant and want to eat safely.  To me you're like I was, with two choices. Given what your body is telling you, just assume coeliac/NCGS and work even harder on nailing any contamination. See the tips above etc. Maybe try elimination diets with your Dietician's help to see if there's any other diet based intolerance - it does go with Coeliac - I have a problem with dairy for instance, with others its fodmaps. Finally look into gut healing diets - bone broths, probiotics etc. If your super sensitive it could be that you have leaky gut and you could help to repair that with some diet choices which may make you less sensitive.  Or you can go to the GP and try and nail down a bona fide diagnosis. That would mean a gluten challenge and you'd need support for the 8-12 weeks of blood testing and possible endoscopy. This board would be a good place for that if you choose to go down that route. A good GP or GI consultant makes all the difference there and maybe you could quietly check via colleagues or the web to find someone you can build a good relationship with.  I think either of them would be a rational approach and in both cases you'll be taking action to improve your situation, which in itself is a good thing.   
    • Hi, Ok good advice and I am sincere when I say how much I appreciate a lot of the responses, advice and encouragement that have been posted here. I'm not sure what a nutrionist is but a dietician (here in the U.K.) is a heavily regulated medical profession and my dietician is based most of her week in a hospital where doctors and MD's as they are known refer patients to her for help. She works every day with celiacs, dh sufferers and people with crohns, ibs etc and seeing my skin, listened to what I was saying (particularly about how my redness and blisters resolved on a gluten free (though not wheat free) diet for several years, and sent a report to my doctor/MD requesting a battery of tests - tests that can indicate dh, celiac and associated complications. I also have a friend with a wheat allergy and two with celiac (all diagnosed) and they are encouraging me to go ahead with getting these particular tests. So that's great but reading the above quote that suggests that situations like sharing an oven used to cook gluten-containing pizza, should not cause a gluten reaction. I thought, my god what's the point of going through these tests if my recent reactions aren't actually to do with gluten. Although my dietician is concerned about possible dh and has been through years of medical school, I also really trust the advice of an advanced member on this site and if they think oven-sharing shouldn't cause any gluten reaction, what hope do I have with an MD? It has taken me years to pluck up the confidence to ask for any medical help because I feared that sort of response along with a focus on psychological issues and hormones etc early on in the thread (even though, I only started feeling depressed since yesterday). Actually, I'm a mental health nurse so it's good to see people are alert to these issues but I am also pretty familiar with depression and I know that many people with physical health problems are fobbed off by doctors with talk of depression, stress, and hormones. I'm sorry that I took the (above) quote to heart and I know that I allowed that to colour my perception of the whole thread, which has been helpful in many ways. Best wishes to you all, even those I didn't agree with! Rhian 
    • I thought maybe doing a trial period to see if he reacts positively to being gluten free and then adding it back to see if symptoms come back would maybe be helpful to the doctor? But I guess that's true, it might skew things regarding any future tests that might be warranted. 
    • If you haven't had her tested yet please do not go gluten free. Get the celiac testing first as if she does feel better gluten free when she has to go back on gluten for testing she may have much worse symptoms.  There will also be a higher risk of false negatives.
    • I did not mean to imply that you should put him on a gluten free diet.    If you suspect a problem with gluten, please get an opinion from a GI who is celiac savvy.  All celiac testing requires a patient to be consuming gluten.  The slightly equivocal TTG?  That warrants a gene test at the very least.   http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf  
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