• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
CassandraMae1985

Sick Just By Touching Or Smelling Gluten

Rate this topic

Recommended Posts

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.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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.

  • Upvote 2

Share this post


Link to post
Share on other sites

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!

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
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.

  • Upvote 1

Share this post


Link to post
Share on other sites

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.

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

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.

  • Upvote 2

Share this post


Link to post
Share on other sites

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.

  • Upvote 2

Share this post


Link to post
Share on other sites

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.

  • Upvote 2

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

There are definitely different levels of sensitivity to gluten.

True story: I go to the doctor's office. The nurse/receptionist hands me a pen and clipboard, and I take a seat in the waiting room to fill out the forms. Within a minute or so, I get a nasty tin-foil taste in my mouth and my lips begin to burn. First stage of gluten exposure? Nah... Couldn't be. I'm in a DOCTOR'S OFFICE for cryin' out loud. Must be my imagination or something. I continue to fill out the forms. Then, I start to cough and gag - DEFINITELY gluten exposure, but where and how is it possible? That's when I look around and see the nurse/receptionist who handed me the pen and clipboard sitting at her desk noshing on a baggie full of banana bread. Geez! At least she could have wiped her hands off before she handed me the forms, that's just good hygiene! I quickly finish filling out the forms and hand them in. The nurses all back away from me because the reaction is now so strong they are convinced I have the dreaded Swine Flu... I excuse myself, then go to the bathroom to throw-up...

I explain this to my doctor when I see him. He scoffs, and tells me I have Acid Reflux... I never went back for the follow-up.

The dermal immune system in your skin is the first one to react, and it happens so quickly and effectively that researchers believe they can improve the efficacy of vaccines by mimicking that response as the vaccines are administered. For this reason, there is no doubt in my mind that an anti-gliaden immune response can be initiated the moment someone simply comes into contact with a source of wheat gluten. It has happened to me many times, just coming into contact with bread crumbs or an empty pizza box. It can be a real pain in the neck, but on the positive side I never accidentally ingest wheat gluten when I can "feel" it before I'm at risk of becoming seriously exposed to it.

  • Upvote 2

Share this post


Link to post
Share on other sites

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.

dont let anyone tell u your nuts i have the same problem. gotten so bad wife or kids make toast and im sleeping i awaken so violently sick almost ten fold what happens if i eat gluten. i got so i had to sell the deli/catering company i had...couldnt walk into the front door of my own restaraunt. i even tried uising an epi pen / benadryl / albuterol when i had an attack that a doctor scarcastically gave me a perscription for all the while telling me i was nuts and its medically impossibleto have a reaction from smelling it as he said if that was the case you think the  airlines would give u peanuts...people with peanut allergies dont drop from smelling peanuts....so much ignorance around soo many educated people...i wish i had a medical answer or reason for you all i can sa is your not alone and trust your body

  • Upvote 1

Share this post


Link to post
Share on other sites

has anyone ever heard of cocaine? ever see a movie they are all wearing masks? ever walk into a lab where cocaine was being made?of probably not but if you did without a mask on you would not only get high your blood would test positive......how is walking down the bread isle for an extremly sensitive celiac/non celiac with gluten intolerence any different?? time and time again (thank god...ok not thank god as i dont want others suffering but thank god as now i know im not the only one) but thank god im reading all these posts saying i live near a wheat farm and in peak season im glutened every day....i cant walk down the bread isle....i cant walk into a pizza place....none of you are crazy!! i owned a successful deli/catering company i sold because going to work was making me so ill i was positive i had ms...what was it...airborne gluten....i dont care what any professional tells me i know what my body says

Share this post


Link to post
Share on other sites


Ads by Google:


Very useful information members. 

 

I would like to share about my wife's issue with gluten. None of the the tests are positive for Gluten Allergy or Celiac.

 

Initially she started feeling sick and we do not know the reason for sickness. Later we linked Gluten to her sickness with our own observation. Later we figured that gluten smell also makes her sick. Recently she was healthy and we were shopping. She was 100% fine till we reached the checkout of SAMs club and she is sick by the time we reached the exit gate. Because there was restaurant where they sell and serve pizza to customers. She doesn't have clue that the restaurant is going to make her sick. So its not psychological.

 

Her symptoms:

 

Instantly she felt walking from checkout to exit gate

1. Chest tightness and slight pain

 

within 2-3 minutes

2. Severe cough from deep stomach and clear mucus

 

Within 5 minutes

3. Nausea feeling

 

Within 30 minutes

4. Severe body pains and muscle cramps

 

Next 24-36 hours 

5. Severe Fatigue... 

 

After that she is normal person. 

 

She has same symptoms when she eats any wheat / gluten product also. Sometimes she will be suffering with fatigue for 72 hours for any gluten contamination. 

Within those 72 hours she looses about 2-3 pounds weight.

 

Our PCP thinks this is psychological and we are crazy. She doesn't believe what we are saying. 

 

Question: Do we need to see Immunologist now?

 

 

 

 

 

 

 

Share this post


Link to post
Share on other sites

If she is not eating anything while there, or walking through a flour dust cloud, then it is most likely not celiac disease or non-celiac gluten sensitivity (NCGS. for which there is no test.  That disease and sensitivity are triggered by consuming gluten, meaning it has to get inside and onto your mucus membranes.  Celiacs can handled normal baked goods without any risk of being affected because gluten can not pass through our skin - it is much too large to do that.

 

Wheat allergies can cause a reaction without eating wheat, but the symptoms you list do not really sound like a histamine (IgE) reaction.  I do know that allergy testing is not 100% reliable so it is possible to get false positives and negatives on those tests.

 

A psychological reaction is not crazy.  If that is the issue, that is a real issue!  Just because the brain is controlling a reaction does not make it any less real than when another part of the body triggers the reaction.  Some celiac disease symptoms, like neuropathies, can be said to be all in the head, but it doesn't make them any less horrible or debilitating.  KWIM?

 

For instance, some doctors believe that some asthmatic reactions are psychological and linked to anxiety. This is not a widely accepted belief yet but it makes me wonder... I had a childhood friend with severe asthma, who got to the point where he was off to the hospital if he saw peanut butter sandwiches from across the room.  His symptoms were horrible but I wonder if part of that was psychological since he was over 10 feet away from the peanut butter and was fine until he knew it was there.

 

So she was tested for celiac disease?  Did they run the full panel?  Some doctors only run one or two tests, which is a problem since some of those tests can miss a significant minority of celiacs.  These are all of the tests:

ttG IgA and tTG IgG

DGP IGA and DGP IgG (deaminated gliadin peptides)

EMA IgA

total serum IgA - control test

AGA IgA and AGA IgG - (anti-gliadian antibodies) -older and less reliable tests largely replaced by the DGP Test

endoscopic biopsy - 6+ samples taken

 

The blood tests require the patient be eating gluten in the 2-3 months prior to testing or you run a strong risk of getting false negative results.

 

Some doctors, and naturopaths, run IgG based food sensitivity tests, but those are not overly reliable and are not yet widely accepted.  They are not a reliable test for NCGS - only a positive response to the gluten-free diet is thought to be diagnostic of NCGS

 

She could try genetic testing too.  97% of celiacs have the DQ2 and /or the DQ8 gene(s), although you need to remember that 30% of the world also have those genes.  If she has the genes, she has about a 1 in 30 chance of being a celiac.  

 

Make sure she has had the testing done properly. If you are certain it is a gluten sensitivity and the tests were definitely a negative, then she may have NCGS, and staying gluten-free is all you can do.  

 

... Reacting to the smell of gluten sounds psychological to me though.... I get anxious in the bread aisle too, even though I know I am safe, so I know a psychological reaction is possible.

 

Best wishes.

Share this post


Link to post
Share on other sites

Thanks NVSMOM for your input.

 

Fowllowing tests were done  ... NONE came positive.

 

ttG IgA but not tTG igG.

Video Endoscopy (Upper GI)

Vitamin D-25 Hydroxy

Vitamin B-12 Level

Hematalogy Hemogram

Serum Iron & Calcium

Barium Swallow

 

Walking through bread isle is really true and I observed how much she suffered. Also when my kids heat Pizza slice in microwave, she gets sick too. So we totally banned gluten products into home. 

Handling situation is very tough when going out to shopping or doctor office or testing facility.

 

 

 

total serum IgA - control test

AGA IgA and AGA IgG - (anti-gliadian antibodies) -older and less reliable tests largely replaced by the DGP Test

endoscopic biopsy - 6+ samples taken

Share this post


Link to post
Share on other sites

She only had one celiac disease test done, and that test, the tTG IgA, can miss up to 75% of celiacs.  Plus she did not have the total serum IgA done, which is a must for determining if the IgA based celiacs tests (tTG IgA, DGP IgA, etc.) are accurate.  Approximately 1 in 20 celiacs is deficient is IgA (compared to approx. 1 in 700 of the regular population) and those people will have false negative IgA based celiac disease tests (ttG IgA, etc) and must rely on the IgG based tests (ttG IgG, etc) and the endoscopic biopsy.

 

If she is interested in a diagnosis, she should get the tTG IgG, DGP igA and IgG, EMA IgA or IgG, and possibly the AGA tests.

 

Although she had an endoscopy done, unless she had biopsies taken (6 or more), she did not have a celiac disease test done.  It is very rare for a celiac's damage to show up visually. Very rare.  I've been posting for about 3 years here, and I've only seen 2 or so people who had visual damage that was identifiably celiac.  At most, celiacs will just have some red areas when looked at, that's it.

 

If it is celiac disease, your kids will have to be tseted every two years, or as soon as symptoms develop, for the rest of their lives if they continue to eat any gluten.  It's a genetic disease so if their mom doe have it, they have somewhere between a 1 in 10 to 1 in 22 chance of developing it.  The same goes for her siblings and parents.

 

I'm sorry that she is having such a tough go.  Don't discount anxiety as a cause though.  Here are some symptoms of anxiety (which is a very common symptom of celiac disease and NCGS):

 

What Are the Symptoms of an Anxiety Disorder?

Symptoms vary depending on the type of anxiety disorder, but general symptoms include:

  • Feelings of panic, fear, and uneasiness
  • Problems sleeping
  • Cold or sweaty hands and/or feet
  • Shortness of breath
  • Heart palpitations
  • An inability to be still and calm
  • Dry mouth
  • Numbness or tingling in the hands or feet
  • Nausea
  • Muscle tension
  • Dizziness

I took that from here: http://www.webmd.com/anxiety-panic/guide/mental-health-anxiety-disorders

 

A celiac will not getglutened walking by the bread aisle or smelling pizza.  It just isn't possible.  A celiac with anxiety as one of their symptoms could have those symptoms of anxiety when exposed to a stressful situation, like worrying about gluten in a store when the knowledge that it can't hurt you is not fully internalized.

 

I completely believe you that she is having horrible symptoms that may be due to celiac disease or non-celiac gluten sensitivity (NCGS) but I find it highly unlikely that she is getting glutened by smell.  The only time that is truly a risk is if she is using flour to bake and the flour settles onto food or food prep surfaces.

 

Do be aware that symptoms like anxiety (if that is what it is) can be one of the slower symptoms to improve.  It could be a good 6 months gluten-free before she starts to notice improvements in that... Anxiety is a real medical problem and not just in her head.

 

I hope she's feeling better soon.

Share this post


Link to post
Share on other sites
On June 2, 2015 at 5:24 AM, BenSmart said:

Very useful information members. 

 

I would like to share about my wife's issue with gluten. None of the the tests are positive for Gluten Allergy or Celiac.

 

Initially she started feeling sick and we do not know the reason for sickness. Later we linked Gluten to her sickness with our own observation. Later we figured that gluten smell also makes her sick. Recently she was healthy and we were shopping. She was 100% fine till we reached the checkout of SAMs club and she is sick by the time we reached the exit gate. Because there was restaurant where they sell and serve pizza to customers. She doesn't have clue that the restaurant is going to make her sick. So its not psychological.

 

Her symptoms:

 

Instantly she felt walking from checkout to exit gate

1. Chest tightness and slight pain

 

within 2-3 minutes

2. Severe cough from deep stomach and clear mucus

 

Within 5 minutes

3. Nausea feeling

 

Within 30 minutes

4. Severe body pains and muscle cramps

 

Next 24-36 hours 

5. Severe Fatigue... 

 

After that she is normal person. 

 

She has same symptoms when she eats any wheat / gluten product also. Sometimes she will be suffering with fatigue for 72 hours for any gluten contamination. 

Within those 72 hours she looses about 2-3 pounds weight.

 

Our PCP thinks this is psychological and we are crazy. She doesn't believe what we are saying. 

 

Question: Do we need to see Immunologist now?

 

 

 

 

 

 

 

URGENT - LISTEN UP!!! 

For everyone that is saying you can't get sick walking through a pizza place/bakery/market you are in serious delusion and spreading misinformation that can make a celiac seriously SICK! 

Flour stays airborne for several hours when being used for baking or when moved around shelves. If you inhale it, you can digest gluten particles. This also can happen when dining out if they use flour in the kitchen aka PIZZA. This is why restaurants have to have a completely cross contamination free kitchen space for them to be officially certified. Dining out is like walking through an unmarked mine field unless everything is Gluten-Free on the menu due to ignorance Waitresses will remove bread from a plate and serve thinking it's okay that the bread was only touching for a second. The whole thing is contaminated in actuality.

 Your wife is likely is inhaling airborne flour particles when at the market/pizza place and is having a true immune response to the invader.  

They suggest not baking any gluten items in your kitchen if you have celiacs. Flour particles get everywhere and you can't even see it. It can stay in the air for up to 7 hours!!! Hell you have to ask about cards at poker if they've used flour on the decks to make em easier to deal. 

When most people don't understand the full range of the disease since there isn't a lot of accurate literature they immediately go with the it's probably in their head.  The disease is stressful so it must be psychological.  ITS EVEN MORE STRESSFUL TO BE TOLD ITS IN YOUR HEAD WHEN IN FACT ITS NOT.  It's just something you don't understand or accept. 

I know it's usually a horror story to get diagnosed (was and is for me) so please educate yourself with an open mind on how much this disease is a pita against the Gluten horde and just because you can't see something doesn't mean it's not truly giving you an immune response.

Any gluten that can find its way into your digestive track (nose/mouth) will make a celiac sick. If you use gluten creams and products, don't bite your nails and wash your hands after touching your face/hair.  

Here's a perfect experiment- go into SAMs and have your wife wear a face mask to keep her nose and mouth particle free.  Just mosey around the usual aisles where you guys grab your groceries.  If she doesn't feel sick with the mask on, then she's probably been inhaling gluten all those other trips.  Does she wash her hands before she bites her nails, smoke, or put items in her mouth (chewing gum, pencils, pens, etc.) that could also possible be a source of contamination? 

Check out these two sites for more info: 

http://www.glutenfreeschool.com/2015/05/12/getting-glutened-by-your-kitchen/

http://www.celiac.ca/?page_id=679

http://glutendude.com

blessings everyone! 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,911
    • Total Posts
      943,460
  • Member Statistics

    • Total Members
      67,058
    • Most Online
      3,093

    Newest Member
    Foxdavfri
    Joined
  • Popular Now

  • Topics

  • Posts

    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
  • Upcoming Events