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How Sensitive Are You?


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20 replies to this topic

#1 T.H.

 
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Posted 28 February 2011 - 01:00 AM

I thought it might be nice to have a brief roll call of sensitivity, as it were. If a product is recommended, or recommended against, it makes it so much easier to know how that can relate to my own life if I know whether the person posting is about the same level of sensitivity as me, or more, or less, if that makes sense? Thought it might help everyone else the same way. :)

Soooo...

My daughter seems to be able to eat somewhere between 5ppm-10ppm, at a guess. Although how that translates on a day to day basis, I'm not really sure. If she eats products that are tested to 5ppm or less, she's usually okay if she only has one serving. The brand products that are <10ppm sometimes she's okay with, sometimes not, so we're not really certain where the exact cutoff is.

Me, best guess is that I react to less than 5ppm. The few times I've found a product that was tested at 5ppm or less, and didn't contain my allergic foods, I still got a gluten reaction. Still investigating, but that's what it's looking like so far.


Anyone else wanna jump in and share their own? If you don't know, probably brands that you can eat would do fine, yeah? Like, Udi's tests to 10ppm or less, but Pamela's to 5ppm or less, for example.
  • 2

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


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#2 dilettantesteph

 
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Posted 28 February 2011 - 05:31 AM

Both my son and I unfortunately seem to react to gluten below 5 ppm. This is based on reported company testing of products.
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#3 potatopeelingmom

 
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Posted 28 February 2011 - 02:12 PM

I thought it might be nice to have a brief roll call of sensitivity, as it were. If a product is recommended, or recommended against, it makes it so much easier to know how that can relate to my own life if I know whether the person posting is about the same level of sensitivity as me, or more, or less, if that makes sense? Thought it might help everyone else the same way. :)

Soooo...

My daughter seems to be able to eat somewhere between 5ppm-10ppm, at a guess. Although how that translates on a day to day basis, I'm not really sure. If she eats products that are tested to 5ppm or less, she's usually okay if she only has one serving. The brand products that are <10ppm sometimes she's okay with, sometimes not, so we're not really certain where the exact cutoff is.

Me, best guess is that I react to less than 5ppm. The few times I've found a product that was tested at 5ppm or less, and didn't contain my allergic foods, I still got a gluten reaction. Still investigating, but that's what it's looking like so far.


Anyone else wanna jump in and share their own? If you don't know, probably brands that you can eat would do fine, yeah? Like, Udi's tests to 10ppm or less, but Pamela's to 5ppm or less, for example.


My son and I both react to 10 ppm or higher. I am very picky about which companies we purchase from. It has to be manufactured in their own "wheat free" factory and test at the lowest level. I purchased a vita mix with the dry bucket and now make my own Lundburg rice flours. Also El Peto is good for the other flours.

Take care,
Monica
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#4 jerseyangel

 
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Posted 28 February 2011 - 02:45 PM

For myself, I don't think in terms of PPM. I know that I do best on whole, naturally gluten-free foods. The packaged foods I do use are from companies like Gluten Free Pantry and Glutino where they are processed in dedicated conditions. I have problems with spices, so I use fresh onion and garlic. I can use plain frozen veggies now and then without issue.

I need to use gluten-free topical products also.

I'll be gluten-free for 6 years this summer and remain very sensitive but my reactions are much shorter and don't happen very often since I got a handle on what I can and can't tolerate.
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#5 T.H.

 
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Posted 28 February 2011 - 11:38 PM

I need to use gluten-free topical products also.



Any recommendations on these? We've been looking for some, especially as I have a minor wheat allergy, too, but having a difficult time finding good ones, to date.
  • 1

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#6 dilettantesteph

 
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Posted 01 March 2011 - 04:50 AM

For myself, I don't think in terms of PPM.

Good point. PPM is a concentration so it depends on how much of it you eat. How many years did it take you to get to a completely safe diet?
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#7 jerseyangel

 
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Posted 01 March 2011 - 05:46 AM

Any recommendations on these? We've been looking for some, especially as I have a minor wheat allergy, too, but having a difficult time finding good ones, to date.

For hair I use Giovanni, Garnier, and Alterna. I have yet to find a Giovanni or Garnier hair product with gluten and Alterna has several but read labels carefully. They have a new "Organic" line where they actually state "gluten-free" on the front of the container if it is so.

I also like shampoo bars from Chagrin Valley and soaps from the Soap Shed because they both offer bars that don't contain coconut which I am sensitive to. Also good if you don't want lot of additives. Neither company is gluten-free, so read ingredients.

http://www.chagrinva...apandcraft.com/

http://www.soapshed.com/store/home.php

I use Dove Sensitive Deodorant--used to use a crystal but after a few years they begn to irritate my skin pretty badly.

Make up--Everyday Minerals foundation, Nars Blush, Smashbox shadows, Loreal Million Lashes Mascara, Burts Bees Lip Shimmers, Afterglow Cosmetics Lipsticks.


Good point. PPM is a concentration so it depends on how much of it you eat. How many years did it take you to get to a completely safe diet?

I would say close to 3 years, and even after that there were things like nuts that I still needed to cut. I think I played catch-up with myself for a long time--identifying a problem and cutting it out, only to relapse and have to do it all again with the next thing. At the beginning, I made the classic "super sensitive" mistake of thinking that I could eat anything as long as it was labelled gluten-free! It's been the last year and a half or so that I can truly say I'm on an even keel. As long as I stay with what I know is safe for me and don't try new things (unless it's one at a time and watch carefully after repeated ingestion), I'm doing ok.

I have a few other intolerances too, so that was a part of the process. Along the way I saw 2 allergists, and 3 gastroenterologists.
  • 1
Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#8 T.H.

 
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Posted 01 March 2011 - 07:38 AM

Thank you for the recs! I'll have to go hunt these down and check 'em out. I managed to find Afterglow for the one lipgloss I own now...which I never get to use as it somehow ends up in my daughter's bathroom more than mine, LOL.


shauna
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#9 ecf

 
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Posted 02 March 2011 - 05:40 PM

Hi Shauna,

For hair I use Neutrogena Shampoo Anti-Residue Formula (although I don't love it, just haven't been able to find anything else that works for me) and Neutrogena Clean Replenishing Conditioner.

Soap: Dove Unscented Beauty Bar

Moisturizers: Neutrogena Oil-Free Moisturizer for my face, and plain old Vaseline rubbed in well for everything else

Chapstick: Carmex

Make up: all Nars, which is supposedly a completely gluten free line

Emily
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#10 Mago

 
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Posted 20 March 2011 - 05:23 PM

I've only been gluten-free for 2 months, and I'm really trying to guage my sensitivity. My bloodwork came back negative, and I was told by my doctor that I'm not celiac, and that the gluten-free diet is working fine so assume I'm just intolerant. On Tuesday, I took my boyfriend out to dinner for his birthday, and my "gluten-free"-salad came with croutons on it. I got the waiter to take it back to the kitchen, but they might've only picked off the croutons. I had acute abdomen pain 20 min. later and have been extremely nauseous/bloated/backed up for the past 5 days from what seems to be only cross-contamination. I also have noticed that my "oat essence" hand cream is causing me problems when I touch my face at all.

Basically, I'm getting more questions than answers from all this. Firstly, is it possible to be extremely gluten sensitive and either not celiac or have a negative diagnosis? (I was tested for IgA, possibly IgG, iron and something thyroid-related) Secondly, when you're talking about the ppm's/high sensitivity, would simple cross-contamination be a very high dose for extremely sensitive? Finally, is it normal for the symptom length to vary based on level of exposure? This is my first post, so I hope I'm putting it in an appropriate discussion. :)
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#11 T.H.

 
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Posted 20 March 2011 - 07:32 PM

Firstly, is it possible to be extremely gluten sensitive and either not celiac or have a negative diagnosis? (I was tested for IgA, possibly IgG, iron and something thyroid-related)


I believe so, yeah. I had a diagnosis, but I know a number of sensitive folk who don't, and I believe some of them were negative, yes. But we'll have to wait for them to chime in to make sure. :)

Secondly, when you're talking about the ppm's/high sensitivity, would simple cross-contamination be a very high dose for extremely sensitive?


Cross contamination seems to be able to really zap some folks who are moderately sensitive, oh yeah. How high the 'dose' is really kind of depends on the person, far as I can tell. It's kind of funny. Celiacs are told to avoid cross contamination very vigorously, and yet at the same time, a lot of experts then say that we can have X mg a day and be all right.

But many people I know can consume gluten once, in such a small amount it's invisible to the naked eye, and they are still having a reaction. And that's WAY lower than the Xmg a day that is supposed to be safe. I think if you react to the crutons having touched your food, though, it's probably a good sign that you're on the sensitive side.

A friend's toddler just did something similar, where he shared a straw twice with someone who was eating gluten at the time and he was sick for 2 days. The crutons probably had more gluten than that, I would imagine.

Finally, is it normal for the symptom length to vary based on level of exposure?


It seems to differ from person to person. Gut symptoms are often a week or less, I think (I don't get these, so that's just my faulty memory at work here. :D ). Neuro symptoms and the DH rash can take weeks to dissipate, in some. The amount of gluten for most of us does seem to have some type of increase, but I've seen some where the intensity of the reaction was what went up, and I've seen some where the length of time of the reaction increased, and some with both.

But one thing that does seem very common is that as you stay gluten free, you may react to less gluten, and you tend to have a stronger reaction to it, as well.

So sorry you got zapped, though! It's never a fun time. :(
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#12 Mago

 
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Posted 20 March 2011 - 08:01 PM

Shauna, thanks for your post, it really helps a lot! I guess only time will tell to see if I have to go the de-contamination route. :)
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#13 ecf

 
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Posted 20 March 2011 - 11:31 PM

Hi Mago,

It is definitely possible to have a gluten sensitivity (and be very sensitive at that), but not Celiac. I was negative for Celiac but diagnosed with gluten sensitivity three years ago (after over a year of being very ill) and am very sensitive to cross-contamination. There is still a lot of research to be done on gluten sensitivity and how it differs from Celiac, but a major new study just came out:

http://online.wsj.co...3522456636.html

I would say that just removing croutons from a salad would be a pretty serious cross-contamination threat. I think the crumbs that were inevitably left behind would be enough to cause a reaction for both Celiacs and gluten sensitive people who react easily. Say bread had been cut on a prep surface in the kitchen, the crumbs were wiped off but the surface was not washed down with soap and water, and then your salad was prepared on it - even that might be enough to set off a reaction. In your case the crumbs were still probably sitting in the salad - yikes!

My gluten reactions are pretty consistent, in that they always last 3 days and include gastro issues, fatigue, headaches, muscle pain and brain fog. But the symptoms do seem to be more or less severe based on how much gluten I may have accidentally consumed. i.e. if it was a larger amount, I'll probably be spending more time in the bathroom and the fatigue will be more debilitating over those 3 days, etc.
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#14 Mago

 
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Posted 21 March 2011 - 06:51 AM

Oh wow, thanks ecf. Its pretty reassuring to know where these symptoms might come from. I got the impression from my doctor that if wasn't celiac disease then I have nothing that they could help me with/was medically recognized. Luckily I haven't had too many cc problems so far.
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#15 ecf

 
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Posted 21 March 2011 - 08:43 AM

You're welcome Mago! The grey area of gluten sensitivity can be really frustrating, but don't let your doctor convince you that it isn't a real condition, because the medical community is just starting to figure it out. From what I understand, many doctors are not even aware of it yet or are not willing to deal with it because the research is so new. Peter Green at the Celiac Disease Center at Columbia is definitely one of the people leading the way on starting to broach the subject of gluten sensitivity. He goes into some depth about it in a talk he gave recently:

http://www.northbayc...petergreen.html

The video is pretty long, but it is definitely worth at least listening to the parts on gluten sensitivity.

And coincidentally, I'm going to hear him speak in NYC tonight. Will pass along anything new he might have to add.
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