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farmwife67

Anyone Had Dh On The Scalp?

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i get DH at the hair line near my neck. i also get DH on my nose and chin.

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DH ON THE HEAD LOOK JUST LIKE THE SORE ON THE OTHER PARTS WHERE YOU GET IT. EXPECT THAT IT HURTS ALOT TO WASH AND BRUSH YOUR HEAD. JUST BE CAREFUL AND IT GOES AWAY BUT YOU HAVE TO LIVE A VERY STRICT gluten-free LIFE. EAT gluten-free AND ALL YOUR HYGINE PRODUCTS NEED TO BE gluten-free.... NO EXCEPTIONS!!! IT IS ALSO VERY IMPORTANT TO KEEP YOUR SCALP CLEAN I THINK THATS JUST MY OPINION.

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I agree with Daniel*s Amber. try to keep our head clean. Things seem to get owrse for me if I have any type of sweating at all. I also think that the sores on the scalp are the worst, Mine are horrible, they hurt all the time, its enough to drive me crazy--cept im already there. Trust me I have had the sores on my knees, elbows, fingers, feeet, glutial cleft--or the crack of my butt so to speak. under my arms--and teh ones on my head are by far the worst,

noel

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I agree with Daniel*s Amber. try to keep our head clean. Things seem to get owrse for me if I have any type of sweating at all. I also think that the sores on the scalp are the worst, Mine are horrible, they hurt all the time, its enough to drive me crazy--cept im already there. Trust me I have had the sores on my knees, elbows, fingers, feeet, glutial cleft--or the crack of my butt so to speak. under my arms--and teh ones on my head are by far the worst,

noel

It's interesting that those are all places (except fingers) that I get psoriasis, and the psoriasis on my scalp drives me the craziest (unless my heels really flare up and I have real pain when walking) :o

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I have DH on my scalp only, so can't compare it to having it elsewhere, but it's extremely painful, and itchy; still, it was even itchier before I was gluten free. I can't really describe with words how bad it's been. It's been getting better on the whole, but it still flares up sometimes, and I'm doing everything I can do now to avoid gluten and casien like the plague.

It sure makes you crazy, and feel like you just can't take it any more, like you are being tortured almost

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I have DH on my scalp only, so can't compare it to having it elsewhere, but it's extremely painful, and itchy; still, it was even itchier before I was gluten free. I can't really describe with words how bad it's been. It's been getting better on the whole, but it still flares up sometimes, and I'm doing everything I can do now to avoid gluten and casien like the plague.

It sure makes you crazy, and feel like you just can't take it any more, like you are being tortured almost

I went thru this same thing over the summer. Turns out I was eating too much fruit--sugar--as soon as I cut the fruit and excess sugar, I felt like a new woman within 2 days!

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I have DH on my scalp only, so can't compare it to having it elsewhere, but it's extremely painful, and itchy; still, it was even itchier before I was gluten free. I can't really describe with words how bad it's been. It's been getting better on the whole, but it still flares up sometimes, and I'm doing everything I can do now to avoid gluten and casien like the plague.

It sure makes you crazy, and feel like you just can't take it any more, like you are being tortured almost

Hi,

Have you made sure your shampoo is gluten-free? Also, Iodine brings DH out. Good luck

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Thanks to everyone for your posts. I have had terrible GI symptoms, as yet undiagnosed, and misdiagnosed, and terrible scalp itch just like described as DH. I never thought the two problems, GI, and extremely itchy bumps/lesions on my scalp could be related to coeliac/gluten. I just found this blog today, and have never heard about such problems with gluten. Im extremely disappointed that my many GI doctors over the years never even talked to me about it. Hoping to get in to see my GI, calling him tomorrow. best luck to everyone getting back their health.

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I had been using a Redkin shampoo and conditioner. Every single time i used it, my head itched and itched and itched. I had to stop using it. When I said something to a person at a wholesaler (my husband is a hair stylist) She said "oh, are you gluten intolerant or Celiac? It has a HUGE amount of wheat filler in it!" I was like hmmmm...that's interesting....lol. I use Biologe now, and I don't seem to have a problem. Hair color is another one. My husband is Redkin certified, and Redkin uses a lot of wheat. The color dosen't bother me, but products and shampoo/conditoner do.

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I went thru this same thing over the summer. Turns out I was eating too much fruit--sugar--as soon as I cut the fruit and excess sugar, I felt like a new woman within 2 days!

This is the first I've heard of sugar making dh worse.

I'm willing to try anything, so hopefully this helps

thanks, although I love bananas.

Also, I only use gluten free soap for body care that I order in the mail.

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Hmmm, I get this crazy itchy scalp. Never really connected it to DH because I don't get the classic rash, and my scalp doesn't really have bumps, it's just itchy like crazy. It's much worse after an accidental glutening, but I am still suffering a bit with it on a strict gluten-free diet - still learning I guess

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I have had DH on my scalp for as long as I can remember, it was never even associated with a gluten intolerance until recently. Currently I only have it on my scalp, yet as a child I had it under my arms, in and around my ears, and on my belly button. It's downright horrible. Sometimes no matter what I do, how "clean" I keep my head, the flare ups are so bad that it's painful, and SO ITCHY!. I am never completely rid of it, though I am hoping now that I am on a gluten free diet I will have the DH under more control. For years I have been using Nuetrogena extra strength tar based shampoo, which works ok. The best I have found however (and finding it again has been difficult) is P&S Shampoo. For anyone who is experiencing DH on their scalp SINCE becoming gluten free, check your shampoo and make sure it contains no gluten. I recently switched to Shikai shampoos and conditioner (of course still using the Nuetrogena) and as far as I can tell they're great.

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I have had DH on my scalp for as long as I can remember, it was never even associated with a gluten intolerance until recently. Currently I only have it on my scalp, yet as a child I had it under my arms, in and around my ears, and on my belly button. It's downright horrible. Sometimes no matter what I do, how "clean" I keep my head, the flare ups are so bad that it's painful, and SO ITCHY!. I am never completely rid of it, though I am hoping now that I am on a gluten free diet I will have the DH under more control. For years I have been using Nuetrogena extra strength tar based shampoo, which works ok. The best I have found however (and finding it again has been difficult) is P&S Shampoo. For anyone who is experiencing DH on their scalp SINCE becoming gluten free, check your shampoo and make sure it contains no gluten. I recently switched to Shikai shampoos and conditioner (of course still using the Nuetrogena) and as far as I can tell they're great.

welcome to the board!

how long are you on the gluten-free diet now?

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welcome to the board!

how long are you on the gluten-free diet now?

Thanks! This forum has been a very helpful resource so far, I've been doing a lot of wandering around. I have been gluten free for 4 days, not very long. Yet I'm already seeing some magic-like changes :)Gluten intolerance runs in my family, and I have grown very familiar with it over the years.

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I went thru this same thing over the summer. Turns out I was eating too much fruit--sugar--as soon as I cut the fruit and excess sugar, I felt like a new woman within 2 days!

thanks SOOOOO much.

I'm @ 1 week w/ no fruit or sugar, and it does seem to be getting better. cut out the agave nectar in my tea, and my 2 bananas on an empty stomach in the AM. ( i do have an apple sliced up in a salad, but it's not too high in fructose?)

kinda sucks because bananas are my one convience food that i can just go into a store and eat, and don't have to worry about it being contaminated, ect...

i geuss i can get celery and carrots, and just eat them raw?

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Hi everyone.

I was diagnosed with celiac a year ago. I started experiencing stomach trouble 15 years ago. I had extreme stomach pains combined with non stop diarrhea, gas, the works. The Gynecologists I went to, after testing me via upper and lower endoscopy decided that "my problem is in my head." "Get a grip on your life" is exactly what the doctor told me. After about 10 years of stomach trouble, which eventually caused panic/anxiety attacks and almost caused me to quite my job and turn into a hermit, I developed a skin condition. The dermatologists could not figure out what I had. They would scratch their heads and say, "skin infection" with no medicine or solutions. The last skin doctor I went to about 1 1/2 years ago said I probably have skin lupus and that's when I went to a lupus/dermotology specialist in NYU & he is the one who diagnosed me as having celiac.

The skin condition consists of the following symptoms: Small bumps, whitish or skin color. The areas effected are my upper/outer arms, calves & thighs and buttox. Very rarely though, one or two will come out on my face and back/shoulders. Rarely, but it does occur. The itch is indescribable. There's no way I could control not scratching. In fact, scratching, stops the itch. Sometimes they bleed terribly and sometimes not, but always, the scratching eventually stops the itch. No cream works. Cold showers was the only thing that I discovered on my own calms it down somewhat. I later read about baking soda and taking a bath in it or just washing the area with it. This really helps. It helped me sleep at night whereas before I'd be up for hours in agony. Some of the bumps ooze when scratched, some don't and some remain a bump even after the itch is gone. The thing about it is that the bumps come out in the same spot on same parts of the body at the same time. For example, when I get a bump on my upper right arm above my elbow, I get one in the exact same spot on my left arm within the same time frame. I recently read on this site that someone described DH as being this way and now I know that this is just the nature of this condition, and not just my body being in sync :).

Anyway, I went immediately on a gluten-free diet a year ago, when the NYU specialist (God bless him!)diagnosed me with celiac & three months later my skin started easing up and my tummy was almost completely better. I was in heaven until I started eating gluten free oat bread and things started getting bad again. I only recently realized that it's probably the gluten free oat bread that's the culprit and so I'm starting from scratch again, but hopeful that I will heal in the near future. I'm really very careful now about cross contamination, and eat mostly what I cook myself and buy ingredients only from companies that have designated gluten-free equipment or kitchens.

I wanted to share this with all of you so that you can get a good idea of what DH looks like and feels like.

All the best to all of you.

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I have heard that some people also react to oats, gluten free or not. Maybe that is what happened.

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I have heard that some people also react to oats, gluten free or not. Maybe that is what happened.

I suspect so. Wish the information on the box would say this in a more obvious place or manner. It's sad that companies producing the products don't take extra care in how they market their stuff. I have to think they just don't realize how people suffer as a consequence of eating something they are not allowed to eat.

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I have it on the scalp too, but not anywhere else. Been gluten-free for only 2 months with occasional accidental glutening. When that happens my scalp gets hot and red and itchy and more hair falls out. Already have lost about 25/30% of my hair.

My dermatologist has just recommended a solution called Avixis. You put it on your scalp every night for 3 months and he says hair will stop falling out in 2 months and the follicles will be repaired.

Has anyone ever heard of this medicine? Know anything about it? I'm in Mexico and this medicine, I believe, comes from Germany.

TIA

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Thank you everyone who has posted about your DH. I have learned way more here than from several docs (including dermatologists) who have drawn a complete blank with my burning, itching, blistery, horrible rash. After reading all your posts I am totally sure that I have DH (I do have Celiac's).

I also want to share the one and only thing I have ever found that topically helps calm and heal the rash. (Besides eating COMPLETELY gluten free; for years I thought I was gluten-free but I was still licking envelopes, chewing gum, etc.) I have tried every prescription and OTC cream in the world for something that would calm the horrible itching and redness, and nothing has worked UNTIL... a friend told me about making a ginger compress! It is a miracle for my DH!

You get some fresh (organic) ginger root from the grocery/health food store. Ginger is a powerful anti-inflammatory plant. Grate it into a pot of water, a couple teaspoons of grated ginger in a saucepan of water, boil it, then soak washcloths in the hot water. Put a gingered washcloth on your worst spot of DH-- as hot as you can stand-- cover it with a towel and then a hot water bottle. Keep it on there for a while; I watch a TV show or something. It takes my bright red itchy blistery skin down to calm, normal color, normal feeling skin! Total miracle, and all natural and cheap! You can keep the gingery water in the pot and heat it up to use it again; I do it about twice a day. Tell me how it goes!

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Thank you everyone who has posted about your DH. I have learned way more here than from several docs (including dermatologists) who have drawn a complete blank with my burning, itching, blistery, horrible rash. After reading all your posts I am totally sure that I have DH (I do have Celiac's).

I also want to share the one and only thing I have ever found that topically helps calm and heal the rash. (Besides eating COMPLETELY gluten free; for years I thought I was gluten-free but I was still licking envelopes, chewing gum, etc.) I have tried every prescription and OTC cream in the world for something that would calm the horrible itching and redness, and nothing has worked UNTIL... a friend told me about making a ginger compress! It is a miracle for my DH!

You get some fresh (organic) ginger root from the grocery/health food store. Ginger is a powerful anti-inflammatory plant. Grate it into a pot of water, a couple teaspoons of grated ginger in a saucepan of water, boil it, then soak washcloths in the hot water. Put a gingered washcloth on your worst spot of DH-- as hot as you can stand-- cover it with a towel and then a hot water bottle. Keep it on there for a while; I watch a TV show or something. It takes my bright red itchy blistery skin down to calm, normal color, normal feeling skin! Total miracle, and all natural and cheap! You can keep the gingery water in the pot and heat it up to use it again; I do it about twice a day. Tell me how it goes!

OMG

i'm going to the store right now!

thank you so much!

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Holy cow! You people are all angels! I have been suffering unbearably with these hot, itchy, and painful bumps on my scalp for a year now. Two doctors had no idea what it was, so I was sent to see a "dermatologist." To my utter shock, he told me I WAS DIRTY! HE TOLD ME TO WASH MY HAIR EVERY DAY with a shampoo called Nizoral, that it would take the itch away. He also prescribed a Vaseline based salve with a steroid in it. Guess what? It did nothing nor did the shampoo, and the more I washed my hair, the worse it gets. It's like torture, and I just can't stop scratching holes into my scalp. Then they scab over, then itch again. I was almost ready to shave my head, until I found this forum. I knew nothing about celiac disease, sensitivity to gluten... I knew nothing. Just so happened that my daughter found a paper talking about celiac during her visit to her GI yesterday. She brought it home for me, and demanded that I read it!  WHAM- a light come on, and I said to her... That IS what I have. I am going to my GP tomorrow to demand that I be tested for ciliac. I am rather terrified, as I am already a type 1 diabetic and have been on insulin for 52 years! I was blaming my diabetes the whole time. I have had a lower left leg amputation, and the last thing I need is to start getting this ungodly rash on my stump!!!

Thank you everyone for all of the useful information you have provided in this blog. Maybe I'm not going to die after all! 😉

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On 10/10/2010 at 3:36 AM, farmgirl12 said:

I agree with Daniel*s Amber. try to keep our head clean. Things seem to get owrse for me if I have any type of sweating at all. I also think that the sores on the scalp are the worst, Mine are horrible, they hurt all the time, its enough to drive me crazy--cept im already there. Trust me I have had the sores on my knees, elbows, fingers, feeet, glutial cleft--or the crack of my butt so to speak. under my arms--and teh ones on my head are by far the worst,

 

noel

I agree so much!!! I have been scratching my head since November and it’s February!!!!!

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Just to let you know. This thread is really old, it's from 2010. None of those people are still here.

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    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

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    • Might be your new regular, if you went to a whole foods diet with plenty of veggies, etc. And less processed crap your getting more fiber. I used to get constipation before going gluten free....yours could be a similar issue but just 2 months is a rather short time. Many times constipation is brought on by magnesium issues, healed gut, etc. can fix this,

      Other thoughts, are you consuming a lot of fruits, juices, taking vitamin C. Frequent bowl movements could also be your getting your upward threshold of vitamin C. You could be getting more fiber then your used to.

      Or you could be getting a light gluten exposure from a condiment jar/butter tub with crumbs, or a pan with scratches you did not throw out. Ate outside your own house? Do check the newbie 101 thread to see if you missed anything.

      Any other information you can tell us? Like what you eat, Do you see pieces of undigested food? This could be a enzyme issue or a gut biome issue.
       
    • Sure.  That could be normal for you.  2 months isn't that long to heal and get everything regulated.   It may be different 2 months from now.
    • I have been recently diagnosed with Celiac's Disease.  I have changed my diet for the last 2 months.  I am finding that I have to go to the bathroom about 3 or 4 times in the morning.  It is not diarrhea. I used to go once a day. Is this normal?
    • I think what is going on for a lot of people experiencing being glutened by vapours is that they are perhaps mis-attributing the experience to the vapour, when in fact they were glutened by other means (swallowing airborne flour particles, splatter, touching contaminated surfaces). Proteins (eg. gluten) are heavy, and cannot evaporate or be suspended in water droplets that have evaporated.  I have worked for many years in different lab settings working with dangerous chemicals and biohazardous materials (human/animal tissue and bodily fluids). You should see what I am legally required to wear when handling materials that are merely hazardous by ingestion or particulate/droplet inhalation! I have to wear gloves, a mask and two layers of protective clothing. I am not allowed to bring food or water into the same room at all, and must remove all clothing/protective equipment before leaving the experiment room. Why all this? Because humans are really, really bad at touching contaminated surfaces and then touching their faces. This is how you get most of the colds, flus, and stomach viruses you've had in your life. You touched something bad, and touched your face! We wipe stuff on our clothes. Droplets or powders fly up into our faces when we handle stuff, cut, and mix stuff, and we don't notice unless it's "a lot." But we can get sick from much less than "a lot," whether that's gluten or some noxious chemical/pathogen.  I live in a shared kitchen, and I do not go in there when my roommate is cooking. If I'm thirsty, that's too bad, I'll wait. I do no leave anything (food, clean dishes) out unless I am physically present in the kitchen or home alone. I do not prepare food until I have wiped down all surfaces (handles, taps, counter) that I will interact with while preparing my food. I do not allow flour in my kitchen, and do not go into bakeries etc. Before I adopted these policies, I used to get sick a fair bit on a random basis. Now, I am confident that food I prepare in my own shared kitchen is fine, regardless of what my roommates might cook.
    • Nice!  Thanks so much for sharing.  😊
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