Tiny Amounts Of Gluten

[shezatrip]

Hi All,

I was just wondering what your reaction is micro amounts of gluten.

For instance a piece of non gluten food that has touched a glutened food.

Or a cutting board, that has had bread sitting on it?

I have read that people go to these extremes, and I am still learning.

Do you really feel a huge reaction to such tiny amounts? For instance,

a tiny grain off a cracker?

If so, what is your immediate reaction to a microscopic amount of gluten?

can you tell, and what happens?

Thx, just curious :-)

[irish daveyboy]

Hi All,

I was just wondering what your reaction is micro amounts of gluten.

For instance a piece of non gluten food that has touched a glutened food.

Or a cutting board, that has had bread sitting on it?

I have read that people go to these extremes, and I am still learning.

Do you really feel a huge reaction to such tiny amounts? For instance,

a tiny grain off a cracker?

If so, what is your immediate reaction to a microscopic amount of gluten?

can you tell, and what happens?

Thx, just curious :-)

I do anyway, can't speak for others, here's an example.

My local supermarket were sampling smoked salmon and brown regular soda bread.

My neighbour tried some and thought it was lovely, the lady sampling asked would I like to try some, I told here I was a Coeliac and couldn't eat gluten bread.

She said my friends daughter is a Coeliac and I know she can have salmon why not just try the salmon.

It looked good so I said ok, she cut me a big piece, lifted it up on the knife for me to take.

I popped it in my mouth an ate it, it was then that I noticed it was the same knife she spread the bread with.

I thought to myself can't do much harm ..... Boy was I wrong .... 6 hours later I had severe cramping, Vomiting and Diarrhoea that lasted 4 days.

Never made that mistake again, all gluten-free foods should be seperate or individually wrapped, I'm like a hawk when there's a possibility of cross-contamination.

I got rid of cutting boards, wooden and plastic utensils in my house.

Now my house is totally gluten-free, I won't let anything containing Gluten inside the door.

I never want to experience that again.

Best Regards,

David

[shezatrip]

Wow! So there is a major reaction...I guess in one way, that is good your body detects it..However hard on you!

Can other people get away with small bits with no reaction?

Also, are there people on this board that react without diarrhea,etc....?

I am getting my biocard test done next week...finally!

[T.H.]

I have 4 diagnosed celiacs in my family. Two of them - they are a little careful, but if their food touches gluten food, usually they have no reaction. They get the big D maybe the next day, day after, a little cramping, and that's it. So there are definitely celiacs who don't have to be as careful, at least symptom-wise. Although my father is now starting to have trouble again after 8 years gluten free, so he is trying to be more gluten-conscious, wondering if maybe not being careful might have had an effect he didn't notice at first.

My daughter and I are more sensitive. No touching of our foods to gluten or it's major unpleasantness. Foods processed in the same room as gluten make us sick. Gluten free foods that are <20ppm make us sick, even! My daughter, we think, can have foods that are <10ppm of gluten, but it's been hard to tell, since she is still sometimes sick when we think she should be okay.

I get vertigo and headaches, nausea - within 15-20 minutes after eating. Aches and pains and other symptoms for the next few days. Rarely do I get diarrhea, although it happens.

My daughter gets horrible stomach pain, now vertigo is starting too, huge emotional problems and anxiety attacks, but she also rarely gets diarrhea, just terrible gas.

Like you said - it's hard, but it is REALLY helpful to know when we're not safe enough for our bodies. Also, have to admit, very motivating to stay on the diet, when the results are so severe!

[quincy]

I have 4 diagnosed celiacs in my family. Two of them - they are a little careful, but if their food touches gluten food, usually they have no reaction. They get the big D maybe the next day, day after, a little cramping, and that's it. So there are definitely celiacs who don't have to be as careful, at least symptom-wise. Although my father is now starting to have trouble again after 8 years gluten free, so he is trying to be more gluten-conscious, wondering if maybe not being careful might have had an effect he didn't notice at first.

My daughter and I are more sensitive. No touching of our foods to gluten or it's major unpleasantness. Foods processed in the same room as gluten make us sick. Gluten free foods that are <20ppm make us sick, even! My daughter, we think, can have foods that are <10ppm of gluten, but it's been hard to tell, since she is still sometimes sick when we think she should be okay.

I get vertigo and headaches, nausea - within 15-20 minutes after eating. Aches and pains and other symptoms for the next few days. Rarely do I get diarrhea, although it happens.

My daughter gets horrible stomach pain, now vertigo is starting too, huge emotional problems and anxiety attacks, but she also rarely gets diarrhea, just terrible gas.

Like you said - it's hard, but it is REALLY helpful to know when we're not safe enough for our bodies. Also, have to admit, very motivating to stay on the diet, when the results are so severe!

I had my tell-tale pangs last night in the upper right quadrant where most of my original inflammation was when I was diagnosed. That means I ingested some gluten but not sure where it came from.

my question has to do with foods processed on lines that also process wheat. I tried TJ's frozen French string beans and didnt even think to check the bag. I typically stay away from anything that shares production with wheat products which this product warns of. It was either that or the olives I purchased from a grocery store's olive bar, but I have read that olives are safe in almost all situations as they are never packed in malt vinegars.

I wonder what ppm's those products have that share production lines. if anyone has a link to some research on this that would be great.

[shezatrip]

Shauna,

Thanks for your response..It's helping me figure this all out.

I noticed in your post, it said that you were 21 years undiagnosed.

What were your symptoms for 21 years? how were you diagnosed?

[shezatrip]

Quincy,

So sorry to heart that! Just when you think your safe...something cloaked.

I am still trying to discover what is making me so ill. ordering my biocard

this week :-) At least that will eliminate one thing, so i can figure out the

rest. 20 something years of feeling terrible!

Should probably do the pill cam too.

[T.H.]

I noticed in your post, it said that you were 21 years undiagnosed.

What were your symptoms for 21 years? how were you diagnosed?

Phew - it's a long list. I'll see if I can be pithy...It's hard for me. I talk too much!

Until I was around 16, I was a healthy, active kid who almost never got sick. I was in many sports, did well, never got injured, etc...

Then when I was 16 I started catching nearly every cold that year that came along. I got a sinus infection that it took surgery to fix, and for the next 2 decades, I was constantly having on and off again sinus infections.

I developed hay fever at 16 and that got worse over the years.

I started having problems with depression at about 16 that waxed and waned over the years - but always at least once every two months I would have a very bad bout.

I started pulling muscles when I would try to exercise, no matter how much I stretched. That got progressively worse over the next 20 years, too.

I got sick more often, and over the next 20 years, it got worse. Started out as colds and sinus infections, and within 10 years, I was getting worse complications at least a couple times a year, like bronchitis, pneumonia, strep, etc... I was catching influenza once or twice a year. The worst was four years ago when I developed a disease that is common where I live, from a local fungus, but because of my lowered immune system it laid me out for nearly a year. Since then, I've had joint pain and low, short-term fevers at least a few times a week.

I started getting repetitive strain injuries, even though I wasn't doing all that much to get them: carpal tunnel, tendonitis, golfer's elbow, tennis elbow, plantar fasciitis.

I had a few ear infections along the way, I started getting car sick again, even though we thought that had disappeared when I was a child. I could get up quickly or sit up quickly and have my vision black out for a few seconds. And then just a few years back I started having vertigo and dizzy spells combined with ear pain.

I developed partially herniated discs in my neck and back and nerve pain that radiated out from them that went down my arms and legs.

I had been a skinny, skinny kid, but started to gain weight and had a very hard time keeping it off.

I was typically either constipated or had diarrhea, but never one for long enough to seem like it was a problem.

I was often exhausted and suffered from insomnia.

All of this was explained away by the doctors, and frankly, a lot of the explanations sounded at least somewhat plausible. The illness, the injuries, the weight, and the irregularity were all because I must not be eating healthy, wasn't taking care of myself, wasn't sleeping like I should. The sinus problems were because of my hay fever. The nerve problems were due to the herniated discs. The joint pain and fevers were the fungus still active in my bloodstream. The depression was hereditary. The ear pain...at that point, I had a few experts subtly try to suggest that it was all in my head, or it was just stress/anxiety.

I was diagnosed by accident. I had a cough that wouldn't go away, no matter what they tried. It wasn't bronchitis, pneumonia, nothing they could see, but I couldn't stop coughing. So looking for other possibilities, my doctor arranged to have me tested for H. Pylori in the gut. If it caused acid reflux (which I didn't have), it could irritate the lining of the throat and possibly cause my cough.

I was positive for H. Pylori, took antibiotics, and then they had to do a biopsy to make sure the H. Pylori were all dead, since they are often antibiotic resistant. My father had been diagnosed with celiac disease a few years before, and so I just said, "since you're going down there, could you check for celiac disease as well?"

They did, and saw damage, so then I got the blood test and it was positive for celiac disease.

The sad thing is, I would swear I asked the doctor to do a celiac blood test a couple years after my father was tested, but it was never done. Don't know if I'm misremembering asking, or they left the test out accidentally from the other dozen tests, or just didn't do it, period.

I have now been gluten free for about a year...

- I have caught one cold in 16 months that I shook off in 2 days.

- My hay fever is barely noticeable.

- I have not pulled a single muscle

- I have not suffered from depression, at all.

- My vertigo and ear pain are gone, car sickness gone, vision blacking out is gone, unless I get glutened.

- The nerve pain down my arms and legs is gone, unless I get glutened.

- My joint pain and fevers are gone, unless I get glutened.

- My weight went down and stabilized.

- My insomnia and exhaustion went away.

- My insides finally got regular.

And a few more pluses - I have more patience, less irritability, more energy. I can remember better and my thinking is so much clearer than it used to be that it's pretty amazing. Even my kids have remarked on it.

The one thing I never had was gut pain. It's funny - I hear that what I have is usually called 'silent celiac disease,' but then I look back at my history and wonder how I could have all these things and no one ever thought: wow, something's got to be wrong if this person is getting sick so often. We should do a few tests.

Perhaps what I have is more like atypical celiac disease, but most of the people I have met with silent celiac disease are like me: we have lots of signs that something was wrong, but we never would have thought it was due to one disease. I really wonder if any silent celiacs are truly silent, or if the doctors just aren't hearing us, ya know?

Okay...and that was SO not pithy, LOL. Hope it helped, though!

[shezatrip]

Shauna,

Wow! you sound like me :-) TY so much for sharing....I don't feel so alone LOL.

However, I will be pissed if I am diagnosed and these do-do dr's never caught it.

If it isn't this, it will leave me in the endless maze trying to figure it out :-(

SO AMAZED you are feeling better!!!!!!! yay!!!!!!

Maybe 2011 is my year for healing. woot woot!

[kim:)]

Hi All,

I was just wondering what your reaction is micro amounts of gluten.

> Hey, this is very typical. I get sick off of crumbs or if it was fried in the same oils as something containing wheat. Even kissing someone who has eaten wheat, I will still get sick. I would say if you are living with someone that eats wheat, then buy your own toaster/peanut butter/butter or whatever you most commonly share..and always keep everything as seperated as possible. You can never be to cautious when trying to stay away from wheat, because in the end you will only feel better right? : )

Good Luck!

[BethJ]

I learned the hard way when I first went gluten-free. I ordered a salad but forgot to ask for no croutons. When it came, it only had a few so I carefully picked them off. Oh boy, big mistake. I thought I had gotten them all and I didn't see any crumbs but I was sick for the next two days. Whenever I react after eating out, I figure a stray crumb got in there somewhere.

[beefree11]

Hi All,

I was just wondering what your reaction is micro amounts of gluten.

Do you really feel a huge reaction to such tiny amounts?

If so, what is your immediate reaction to a microscopic amount of gluten?

can you tell, and what happens?

Thx, just curious :-)

My daughter recently became extremely ill from cross contamination, we believe. She did not have any gluten food at all. She baked gluten-free pizzas on an old cookie sheet. A cookie sheet that is over 10 years old, has brownish spots of who even knows? and has been used to bake foods with gluten. She felt "funny" immediately. Then came headaches. By 430 am she was on the bathroom floor asking me to drive her to the ER (thankfully, she rode it out and felt better. Her stomach is just beginning to feel good).

That was the first time she has become ill like that, ever. To where she couldn't sit, stand or lay down comfortably. She ate only meals we prepared. The reaction was either from the pizza being baked on a previously used sheet for gluten products, or by carrying food at work from a snack area to a break room for her boss. She claims the items were covered and she never touched them - or ate them. So she had a reaction from just touching food items that had gluten. Within hours it was extreme.

Also, are there people on this board that react without diarrhea,etc....?

Since my daughter has Hashimoto's and is hypothyroid she is extremely constipated -- seven days of no elimination!! Severe. I worry about toxins leaking thru and poisoning her system. Well, I worry alot with this. Her thyroid was enlarged and half removed in 2005. Became ill with an undiagnosed case of mono, showed anti - bodies for Epstein-Barre and basically was given anti depressants for mood swings. Her weight ballooned. She was falling asleep driving to school.

When she moved back home we found a doctor that tested her for allergies. The numbers for most of the foods were quite high--including wheat and gluten and casein/cow milk. The doctor suggested a gluten free diet. She has not had the biopsy. She will not go back on gluten unless it means getting meds/food at no cost. She also is dealing with poly cystic ovarian syndrome and a possible parasitic infection! No more away trips for her, for awhile. She is fast becoming the poster girl for auto-immune diseases. And with no health insurance.

[shezatrip]

Your daughter seems like she is going through a lot. I too was diagnosed

epstein barr along with endometriosis, all the other crazy symptoms.

Yes, it is hard to pay for medical when you are too sick too work!! It's a catch 22, isn't it?

~ Just keep swimming~ that's what I tell myself! from nemo :-)

My daughter recently became extremely ill from cross contamination, we believe. She did not have any gluten food at all. She baked gluten-free pizzas on an old cookie sheet. A cookie sheet that is over 10 years old, has brownish spots of who even knows? and has been used to bake foods with gluten. She felt "funny" immediately. Then came headaches. By 430 am she was on the bathroom floor asking me to drive her to the ER (thankfully, she rode it out and felt better. Her stomach is just beginning to feel good).

That was the first time she has become ill like that, ever. To where she couldn't sit, stand or lay down comfortably. She ate only meals we prepared. The reaction was either from the pizza being baked on a previously used sheet for gluten products, or by carrying food at work from a snack area to a break room for her boss. She claims the items were covered and she never touched them - or ate them. So she had a reaction from just touching food items that had gluten. Within hours it was extreme.

Since my daughter has Hashimoto's and is hypothyroid she is extremely constipated -- seven days of no elimination!! Severe. I worry about toxins leaking thru and poisoning her system. Well, I worry alot with this. Her thyroid was enlarged and half removed in 2005. Became ill with an undiagnosed case of mono, showed anti - bodies for Epstein-Barre and basically was given anti depressants for mood swings. Her weight ballooned. She was falling asleep driving to school.

When she moved back home we found a doctor that tested her for allergies. The numbers for most of the foods were quite high--including wheat and gluten and casein/cow milk. The doctor suggested a gluten free diet. She has not had the biopsy. She will not go back on gluten unless it means getting meds/food at no cost. She also is dealing with poly cystic ovarian syndrome and a possible parasitic infection! No more away trips for her, for awhile. She is fast becoming the poster girl for auto-immune diseases. And with no health insurance.

[beefree11]

Your daughter seems like she is going through a lot. I too was diagnosed

epstein barr along with endometriosis, all the other crazy symptoms.

Yes, it is hard to pay for medical when you are too sick too work!! It's a catch 22, isn't it?

~ Just keep swimming~ that's what I tell myself! from nemo :-)

Thank you so much shezatrip. I had no idea of how many are suffering. Yep, keep on smiling!!

[quincy]

Thank you so much shezatrip. I had no idea of how many are suffering. Yep, keep on smiling!!

Thanks Shezatrip for the kind words. yes, I take a powder formula recommended by my Nutritional Doctor and it helps my gut rebound. It is interesting how similar my story is to T.H.'s I am now 49 and my doctor suspects I was celiac from age 6 or 7. It's hard to know, but I remember YEARS of canker sores. my childhood was spent tolerating terrible canker sores. I just learned to cope. I was also 6'2 and 170lbs for many years as well.

My real decline came in 2006 when I began to experience terrible anxiety (more than the constant anxiety I was able to manage growing up)and depression. No one knew what was wrong with me when I began to lose circular patterns of beard all over my face and neck. It wasn't until the pain began under my rib cage (swollen small intestine)and never went away that I happened to call a GI group who's receptionist happened to have celiac. Thank GOD for her!!

She immediately told me to come in for a scope. Within 2 days I was under the scope and a week after that the results showed Marsh III. what a trip.

I was dx'd in April 2010 and went through several months of hell detoxing from gluten. I had to go on an SSRI and take klonapin for the anxiety, but I am doing ALOT better now. I really at one point thought I wasn't going to make it, I was so miserable. But I have put on weight and the dizziness has stopped as well as the night panic attacks and the arm tingling. The D has stopped but I am still lactose intolerant and have had to stop drinking milk, which I loved to do with cakes and cookies or course!

Thank God for his healing touch in my life and good friends and family to support me through this. I hope and pray you have the same.

Get well soon, it takes time but there is light at the end of the tunnel!!

[shezatrip]

Amen Quincy! Amazing story of recovery that will help so many others!!

It brings me joy reading and hearing healing stories~ recovering from pain and suffering..It can be SUCH a difficult journey as we know.

And YES, Thank-you God for the woman who helped navigate you to your test....

One person can change a life~ Now you are helping others and bringing awareness.

Thanks Shezatrip for the kind words. yes, I take a powder formula recommended by my Nutritional Doctor and it helps my gut rebound. It is interesting how similar my story is to T.H.'s I am now 49 and my doctor suspects I was celiac from age 6 or 7. It's hard to know, but I remember YEARS of canker sores. my childhood was spent tolerating terrible canker sores. I just learned to cope. I was also 6'2 and 170lbs for many years as well.

My real decline came in 2006 when I began to experience terrible anxiety (more than the constant anxiety I was able to manage growing up)and depression. No one knew what was wrong with me when I began to lose circular patterns of beard all over my face and neck. It wasn't until the pain began under my rib cage (swollen small intestine)and never went away that I happened to call a GI group who's receptionist happened to have celiac. Thank GOD for her!!

She immediately told me to come in for a scope. Within 2 days I was under the scope and a week after that the results showed Marsh III. what a trip.

I was dx'd in April 2010 and went through several months of hell detoxing from gluten. I had to go on an SSRI and take klonapin for the anxiety, but I am doing ALOT better now. I really at one point thought I wasn't going to make it, I was so miserable. But I have put on weight and the dizziness has stopped as well as the night panic attacks and the arm tingling. The D has stopped but I am still lactose intolerant and have had to stop drinking milk, which I loved to do with cakes and cookies or course!

Thank God for his healing touch in my life and good friends and family to support me through this. I hope and pray you have the same.

Get well soon, it takes time but there is light at the end of the tunnel!!

[Marz]

Just my 2 cents - my reactions are very hit and miss. And because I'm reacting to supposedly "gluten free" items, I still am not sure if it's a food intolerance or traces of gluten.

We're I've accidently eaten something without checking the warnings, and discovered later the "Could contain traces of gluten" message - I got quite severe symptoms, like D, anxiety etc etc. It's practically as bad as eating a full muffin.

Where I've eaten something that "didn't agree with me", usually some highly processed food that may have had some cc in the original ingredients or in the factory, but no warning for it, I can get milder symptoms. Like mild nausea, sore stomach or throat, an annoying cough with nose running, sometimes a crampy stomach with mild d the next day.

But I can eat the same item twice and react once but not the second time. Might be lucky the second time with the amount of cc I got hit with, or maybe I don't react identically to traces of gluten every time.

[Marz]

Forgot about the skin, the itchy, itchy skin. With or without bumps or rash. Sometimes this is the only symptom I notice, and it persists until I root out the culprit to find relief for my bleeding skin! Bleh!

[thleensd]

Before I was diagnosed, and therefore gluten-free, I had so much of the craziness many here have shared. I've been glutened twice that I know of by tiny amounts of gluten. First...I was working at a high school, and some kids had crushed cheerios right outside my door. When I went out to tell them to clean it up, a big gust of wind came up. I kept my mouth closed, but I know for sure they got into my eyes (I could feel it... ouch), and probably into my nose. Within a few hours I was doubled over on the floor, cramps, D, etc. The second time was at a restaurant (where they have a gluten-free menu, and the manager assured me they were careful). I don't have allergies, and no one else got sick from the same dish, so it wasn't food poisoning. Same thing happened.

It seems now that I'm gluten-free, my body's first and main reaction is to get the toxin OUT!

Good luck.

[quincy]

Before I was diagnosed, and therefore gluten-free, I had so much of the craziness many here have shared. I've been glutened twice that I know of by tiny amounts of gluten. First...I was working at a high school, and some kids had crushed cheerios right outside my door. When I went out to tell them to clean it up, a big gust of wind came up. I kept my mouth closed, but I know for sure they got into my eyes (I could feel it... ouch), and probably into my nose. Within a few hours I was doubled over on the floor, cramps, D, etc. The second time was at a restaurant (where they have a gluten-free menu, and the manager assured me they were careful). I don't have allergies, and no one else got sick from the same dish, so it wasn't food poisoning. Same thing happened.

It seems now that I'm gluten-free, my body's first and main reaction is to get the toxin OUT!

Good luck.

It seems that many of us have become quite sensitive. I just posted a new topic in the Food Labeling topic area of the forum that has a link to a video that shows how much is involved in sanitizing a machine that processes wheat. check it out and see what you think. It really raised some basic questions about the food industry and what they claim. How much gluten is too much gluten for us? I am still wondering this question, but I guess it's different for everyone...

Good news for me though Shezatrip: My latest blood work shows my Celiac antibodies (i think it's the Ttg) at 3! down from 51 in April 2010 when I was dx'd. so happy because I have been SO OCD about not ingesting any gluten.

[psawyer]

It was either that or the olives I purchased from a grocery store's olive bar, but I have read that olives are safe in almost all situations as they are never packed in malt vinegars.

An olive bar? You mean one of those places where the olives are in open bulk containers and customers help themselves and fill their own container? Holy cow! What a risk for contamination, especially if there is a salad bar nearby, like at our local grocery store.

[quincy]

An olive bar? You mean one of those places where the olives are in open bulk containers and customers help themselves and fill their own container? Holy cow! What a risk for contamination, especially if there is a salad bar nearby, like at our local grocery store.

I checked with the store and all the olives at the olive bar do not have anything containing gluten and there is no salad bar nearby to it. I don't normally buy from salad bars anymore, it's too risky for my taste and this was a one-time occasion for the holiday party I had. So I believe it was the Trader Joe's French String Beans which warns that the equipment is shared with wheat production. I have since eaten the olives and have had no problems so I won't buy that brand of frozen string beans. I just stay away from any product that says it was processed on equipment that also processes wheat or gluten ingredients. I just won't risk it.

[MegRie]

I really needed to hear this. I just got really sick from cross contamination. I posted a topic on here and only one person responded and said they never got that sick from cc. Since I am self diagnosed that made me wonder if maybe I was wrong about the whole thing. I keep fretting about it. But then I read these posts and once again felt like I was reading something I had written myself.

To answer the topic question... what happened to me was that I ate at a BK and got horribly cc food. I watched them make it, but thought, surely it won't hurt me that much. Boy was I wrong. I ate the food on 5 days ago. The next day I thought I had the flue I had a horrible migraine that lasted two days, and every time I eat I get a little headache, stomachache, and feel nauseous. It sucks! Such is life, I suppose, but a huge thanks for everyone who has responded, because I at least have peace of mind!

Megan