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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Sensitive Are You?
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21 posts in this topic

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.

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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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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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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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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.

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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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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.chagrinvalleysoapandcraft.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.

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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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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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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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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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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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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.com/article/SB10001424052748704893604576200393522456636.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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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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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.northbayceliacs.org/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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This is a good thread to read through, although I don't understand the numbers in the first several posts. I am normally off of gluten but I fall and become instantly addicted before I jump back on the gluten free wagon and within 20 min. I have stomach pain followed by gas cramps and terrible smelling gas. (sorry, had to go there) I also get neuro. symptoms as well with the two worst being severe fatigue and ADD.

Well, back on the wagon I go!

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Quote How Sensitive Are You? Helping each other out End Quote

I tear-up sometimes watching sappy movies. Ooops, prolly not what you meant! :)

I stay with mostly whole foods, so I don't know how sensitive I am now really. There are not a lot of processed foods I could eat anyway due to my other food intolerances. I used to think I was very sensitive, before I eliminated all my other food intolerances. Basically anything was problem when I was sick and my gut was already irritated.

Nowadays I am still careful about what I eat, and seldom go out to restaraunts. I have a gluten free house, and my cat (Muffin) has gluten free food and treats now.

I do use Barbasol shaving cream, and home made soap that my cousin makes.

I don't try new processed foods very often, but mainly stick with things that I already know work for me.

So far frozen veggies are ok for me, and I seldom have any problem with canned veggies except for some beans. But I don't think that is gluten, just a reaction to the beans themselves.

I do avoid foods that are processed on shared equipment most of the time. I also avoid things that make me sick, whether they are gluten-free or not, or made on shared equipment or not, or are organic and healthy or not.

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This is my first time posting so hopefully I'e got this in the right place.

I've been diagnosed coeliac disease since Sept 2011 and been gluten-free since about Nov 2011 (didn't have the knowledge of a true gluten-free diet beforehand). Im still getting symptoms every so often though and reading through this it made me think that maybe Im reacting to products labelled gluten-free which aren't really, are you saying that a product can be labelled gluten-free but may still have some small amount of gluten that I could react to? I thought gluten-free would immediately mean that it is and has been tested and is also made in a factory that is gluten-free? And how did you all find out that you're sensitive to less than 5ppm etc?

Thanks

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It is a matter of trial and error. Keeping a journal with what you eat and how you feel can be very helpful. It can reveal other food intolerances as well as trace gluten issues. I try to only add one new food a week so that I can more easily tell what has bothered me if I do have a reaction.

Good luck.

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I also have noticed that my "oat essence" hand cream is causing me problems when I touch my face at all.

If it's an allergy reaction, you may also have issues with oats. My issues are allergy-related, and I have problems with even the certified gluten-free oats and oat flours. However, if it is a gluten-free facility that also produces oats and oat flours, it's not as big of a deal for me.

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I'd say I'm very sensitive. I've had reactions to lunchmeat sliced on a machine that looked clean, and from fruit cut up on an all purpose cutting board. I don't eat any gluten-free replacement type foods, like bread. I stick to a mostly whole foods diet.

I don't eat anything that says it's made on shared equipment.

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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