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Sick Just By Touching Or Smelling Gluten
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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.

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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

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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

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You've bumped an old thread. The topic starter hasn't been here in quite some time either.

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My partner baked a packet mix cake (with gluten in it) and I couldn't stop sneezing smelling it cooking.

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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?

 

 

 

 

 

 

 

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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.

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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

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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.

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    • Ah, more information trickles in...... There are a few things that may elevate a Ttg igA result: 1)  celiac disease, 2) Lyme disease, 3) another autoimmune disorder.  Someone recently posted during the Last month who had a very elevated TTg but ended up not having celiac disease.  Instead he was diagnosed with Lyme disease.  My memory could be wrong, so do the research.   The bottom line is that further research by a GI is recommended.   Celiac antibody results do not always correlate with the severity of intestinal damage in someone with celiac disease.  That is why an endoscopy/biopsies is still the gold standard for diagnosis.  Europe is opting to avoid the endoscopy in small children, but not the US.   Her IgG Celiacs tests were negative, so he is checking for a wheat allergy?    
    • Awok, Welcome to the forum.  Have you considered trace gluten?  Here is a study on the topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf It could explain why you felt good for a while.  I personally was glutened badly last summer.  I have no idea what got me.  I suspect either a prescription medication or one gluten free product (not certified).  I ended up on a whole foods diet and avoided even certified processed gluten-free foods including grains until I was healed (three to six months).  
    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
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