Always Super-Sensitive After Going gluten-free?

[NoGlutenCooties]

Hi All -

 

I was recently diagnosed with Celiac and have only been gluten free for 4 weeks.  I did not have any symptoms before the diagnosis, other than early osteopenia, but Celiac is in my family so as soon as I heard there was a blood test for it I got tested.  Sure enough, I have it too.

 

Anyhow, I know my uncle gets severe pain and gets violently ill when he accidentally gets glutened - but he also had pretty severe symptoms for a long time before finally getting diagnosed.

 

My question is - does anyone know if being that sensitive to accidental glutenings after going gluten free happens to everyone?  And if so, does it ever go away?

 

 

Thanks.

[kareng]

I think there is a difference between "Super Sensitive" and having really extremely bad reactions to gluten. Super Sensitive usually means that you react to an extremely tiny amount of gluten that doesn't bother the "normal" Celiac.  This sounds more like you are asking about an extreme reaction to gluten?

 

I don't get that extreme a reaction.  I get GI issues - diarrhea, bloating, gas, sometimes a headache (migraine).  But I can usually function if I have to.  Not mountain climbing, but I can go to the grocery, a meeting, vacuum, etc.  I think what else is eaten with the accidental gluten affects the reaction.  For instance, eating something light like a salad or drinking 3 glasses of wine, eating a bunch of fatty appetizers and a chocolate brownie with ice cream.  The second meal would be hard to digest even if everything is perfectly gluten free, so I think that might make a reaction worse (for me, anyway).

 

Reactions seem to change for some, over time.  Probably has to do with healing and how long between glutenings.

 

 

Wanted to add as I just noticed you said you don't have any symptoms:

 

You may actually have some symptoms you don't realize are symptoms.  For example, you may suddenly realize that you haven't had a canker sore in 3 months.  Or you can eat green peppers without all the burping.  Or migraines are lessened or gone.  Or your fingernails are thicker.

[NoGlutenCooties]

Thanks KarenG - good to know I may not have to have such bad reactions.  I've been afraid to go restaurants...  I have no intention of "cheating" on the diet, but the horror stories of what some people go through upon accidental contaminations is just awful.

 

I hear what you're saying about having symptoms without knowing it, but I really do not have any health problems at all.  I only had them run a bone density test when I hit 40 because that runs in my family too - and I wanted a baseline.  I've recently been getting premenapausal stuff, but I've had my hormone levels checked and I am in fact heading for menapause, so that stuff is definitely hormonal.  I've been dealing with "adult acne" since my early 20s (I'm now 42) but that tends to go away once you hit your mid-40s anyhow (although not always) - so if that goes away I'll never know if it was hormonal or gluten-related, but I'll be just as happy it's gone either way. 

 

Oh... one thing I am hoping is gluten related is my seasonal allergies.  I grew up on a farm and never had allergies - no matter how much hay dust or horse, cat, cow, or goat dander I breathed in.  But about 10 years ago I started getting allergies every spring, and they last all summer.  I spend the better part of the year on Claritin.  I forgot about that one... If that turns out to be related to the gluten thing I'll be a very happy camper!

 

Thanks again!

[kareng]

 

I hear what you're saying about having symptoms without knowing it, but I really do not have any health problems at all. 

 

 

 

 

Sorry.  Perhaps the advice doesn't apply to you but maybe others who read this thread will find it helpful.  Many with no obvious symptoms of Celiac find little things that improve after they have been gluten free and are able to absorb nutrients properly.

[answerseeker]

I think there is a difference between "Super Sensitive" and having really extremely bad reactions to gluten. Super Sensitive usually means that you react to an extremely tiny amount of gluten that doesn't bother the "normal" Celiac. This sounds more like you are asking about an extreme reaction to gluten?

I don't get that extreme a reaction. I get GI issues - diarrhea, bloating, gas, sometimes a headache (migraine). But I can usually function if I have to. Not mountain climbing, but I can go to the grocery, a meeting, vacuum, etc. I think what else is eaten with the accidental gluten affects the reaction. For instance, eating something light like a salad or drinking 3 glasses of wine, eating a bunch of fatty appetizers and a chocolate brownie with ice cream. The second meal would be hard to digest even if everything is perfectly gluten free, so I think that might make a reaction worse (for me, anyway).

Reactions seem to change for some, over time. Probably has to do with healing and how long between glutenings.

Wanted to add as I just noticed you said you don't have any symptoms:

You may actually have some symptoms you don't realize are symptoms. For example, you may suddenly realize that you haven't had a canker sore in 3 months. Or you can eat green peppers without all the burping. Or migraines are lessened or gone. Or your fingernails are thicker.

My nails are growing like crazy and are thick with a normal color to them finally! My nails were thin and the nail bed was this ugly grayish color. I noticed my toe nails look better too.

[kareng]

My nails are growing like crazy and are thick with a normal color to them finally! My nails were thin and the nail bed was this ugly grayish color. I noticed my toe nails look better too.

 

 

Exactly my point!  Now that you are getting the vitamins and minerals that you need into your system, things are working better.  If your Celiac is so bad that you are leaching calcium out of your bones, for instance, what other things might be hurting for nutrients?  I have even heard people who have less gray hair or improved their eyesight.  Not me tho....

[answerseeker]

Hi All -

I was recently diagnosed with Celiac and have only been gluten free for 4 weeks. I did not have any symptoms before the diagnosis, other than early osteopenia, but Celiac is in my family so as soon as I heard there was a blood test for it I got tested. Sure enough, I have it too.

Anyhow, I know my uncle gets severe pain and gets violently ill when he accidentally gets glutened - but he also had pretty severe symptoms for a long time before finally getting diagnosed.

My question is - does anyone know if being that sensitive to accidental glutenings after going gluten free happens to everyone? And if so, does it ever go away?

Thanks.

Everyone's reaction is different. And like Karen said there is a difference between "super sensitive" and violent reactions.

I am pretty sensitive which means I get symptoms with a tiny amount if gluten, for example I dipped a piece of my meat in the same oil/vinegar sauce that my husband dipped his bread. I got symptoms from that but it wasn't a violent reaction.

It was enough to notice (the rash I get, mild cramping) but I wasn't out for the count. But another could eat that and be fine or another could eat that and be sick for 3 days. I think it also depends on your overall health.

[answerseeker]

Exactly my point! Now that you are getting the vitamins and minerals that you need into your system, things are working better. If your Celiac is so bad that you are leaching calcium out of your bones, for instance, what other things might be hurting for nutrients? I have even heard people who have less gray hair or improved their eyesight. Not me tho....

I'm one of those that have gray hair improvement! My hairdresser was amazed. She has been doing my hair for 13 years so she knows the difference. She told everyone in the salon because she couldn't believe it! She said my hair used to have no pigment, so more than gray the pigment was gone it was like streaks of white. My last coloring was in August and I'm just now having to go get it colored again! I have had gray hair since I was 20 so I'm amazed by this

[kareng]

Everyone's reaction is different. And like Karen said there is a difference between "super sensitive" and violent reactions.

I am pretty sensitive which means I get symptoms with a tiny amount if gluten, for example I dipped a piece of my meat in the same oil/vinegar sauce that my husband dipped his bread. I got symptoms from that but it wasn't a violent reaction.

It was enough to notice (the rash I get, mild cramping) but I wasn't out for the count. But another could eat that and be fine or another could eat that and be sick for 3 days. I think it also depends on your overall health.

 

I actually don't think dipping in a sauce that has bread crumbs in it is super sensitive.  Reacting to a crumb is normal.  Super sensitive seems to be those who react to amounts of gluten well below the 20 ppm threshold.  I think that crumb of gluten is probably over the 20 ppm. 

 

And, as we know, just because you don't feel bad....you still have damage.  Its just not bothering you for some unknown reason, but its still there making antibodies. 

 

 

Edit - can't find that picture of a crumb of bread and how much gluten it contains!  I know its here somewhere

[kareng]

I'm one of those that have gray hair improvement! My hairdresser was amazed. She has been doing my hair for 13 years so she knows the difference. She told everyone in the salon because she couldn't believe it! She said my hair used to have no pigment, so more than gray the pigment was gone it was like streaks of white. My last coloring was in August and I'm just now having to go get it colored again! I have had gray hair since I was 20 so I'm amazed by this

 

 

Show off! 

 

 

(need a green jealous face)

[answerseeker]

Show off!

(need a green jealous face)

Hehe

But I'm still dealing with lingering dh and that's not fun at least I think it's dh. I'm seeing a derm soon

[notme]

my hair is also not as gray - before dx, i was 4 weeks between colorings and i needed it BAD by then - gray roots/and what wasn't gray was not really the color i started out with!  now, it grows in my normal (dirty blonde) color with very little gray.  i can go a good 8 weeks (and have been wondering what it would look like if i let it just grow out to see what color it really is LOLZ )  i had a dull headache that i didn't attribute to anything - i actually didn't realize i had it until *poof* it went away one day.  the bloating has gone down, because my intestines aren't inflamed (i should work out a little, because my abdominal muscles are weak from years of 'giving up' trying to hold all that - flat tummy, not so much - but i'm working on it)  like you, i am getting premenipausal symptoms and so it is challenging sometimes.  my skin is not as dry as the sahara anymore, lolz - *and* i haven't been sick AT ALL not even a runny nose - for almost a year.  thanksgiving last year was when i started counting, so if i can just hold out for a few more weeks....  it will be a record for me!  if anybody was sick and even looked at me, i caught whatever the virus of the month was.  not so anymore!   i have been so good with keeping myself gluten-free i have only been glutened 3 times in the past year.  once at thanksgiving, once in february, and once 2 weeks ago (which i have just gotten over)  it's different symptoms, now, than when i was newly gluten-free.  i used to have ALL digestive issues and not notice much of the neuro stuff.  now it's more (spastic lolz) neuro than anything else, although i get a little of all of it.,  really really tired.  but, while my body was busy revolting on itself, i managed to watch our 4 grandkids for a weekend, (even slept with the littlest one who was snotty with a fever and did not catch her cold.  not even a sneeze)  and function slowly, with rests and bathroom breaks in between.  just had to wait it out.  lolz - and i managed to be a tour guide through our haunted historic neighborhood.  it's about 1 1/2-2 hr walking trek.  i was tired, but I DID IT glutened and all. 

 

don't feel like you're paranoid about restaurants - that's where my latest glutening came from.  i spent the last 2 wks kicking myself (and i even survived that hahaha)  the time before was a 'gluten free' cupcake from a non-dedicated bakery.  the time before that i licked a spoon from leftovers that were on a buffet with crackers dipped into them when i was putting them up.  hang tough - it gets easier

[NoGlutenCooties]

don't feel like you're paranoid about restaurants - that's where my latest glutening came from.  i spent the last 2 wks kicking myself (and i even survived that hahaha)  the time before was a 'gluten free' cupcake from a non-dedicated bakery.  the time before that i licked a spoon from leftovers that were on a buffet with crackers dipped into them when i was putting them up.  hang tough - it gets easier

 

Thanks!  I did brave a diner yesterday after having my endoscopy (got my official confirmation/diagnosis) - I was starving from not being able to eat for so long.  I stuck with eggs and potatoes, but my friend had a cheeseburger.  He offered me his dill pickle.  I took one look at it and said - "I don't mean to sound like I'm being fanatical... but it's got crumbs all over it..."  I know he meant well...