What Does Super Sensitive Mean?

[Di2011]

I am undiagnosed and can't afford medical treatment at the moment.

Sometimes we have to go with what works for us so please don't be afraid to experiment with diet and exposure despite what "tests" indicate.

I had problems earlier ( NO breakfast, no fan of pasta, pizza etc etc; bloating, gut sleeplessness etc etc etc etc) but working in a bakery for 9months (2010) created the real and obvious problem. I thought ingesting wheat / glutens might be my problem but after a few months off gluten I know now (I work in kitchens and with lots of breads and toast around I have been able to track) I can't handle the floating glutens in a normal kitchen. Eating now has nothing to do with my undiagnosed gluten/wheat problem but is about getting a new job out of the food business.

From reading a lot online and particularly on this forum it is really obvious that everyone has their own particular onset and ongoing issues with gluten. From reading experiences on this forum I think I probably have about a 18 months (MINIMUM) to get things sorted.

I have been researching and reading so much but what does "super sensitive" mean to you? There doesn't seem to be medical definition

[dilettantesteph]

Sometimes it is called hyper sensitive to gluten. It means that you react to lower levels of gluten than the typical celiac.

The Fasano study used to establish the safe level of 20 ppm for typical celiacs excluded someone from the study because that participant suffered a full relapse. That person was probably a super sensitive celiac.

Super sensitives need to limit their consumption of gluten free processed foods. They often react to distilled gluten such as vinegars and alcohols. They may have problems with things stored in wheat paste sealed wood barrels. They may react to airborne gluten and need to stay away from bakeries. They probably need gluten free households. They need to be careful about toiletries and cleaning products.

They may even have problems with naturally gluten free foods depending on the growing and packaging practices. If shared equipment or fields, or gluten containing bug or weed controls are used, they could be a problem for super sensitives.

The medical community hasn't fully embraced the concept of super sensitivity, but it is getting much better. My definition comes from my own personal experience with the three super sensitive celiacs in my family.

[RiceGuy]

I think what dilettantesteph said is accurate. For me, products labeled gluten-free can still be a problem, especially when grown, transported, or processed using shared equipment. The 20 ppm limit is too high for me. If I catch a whiff of wheat bread or toast, I know I'm gonna have a reaction.

[weluvgators]

I think that dilettantesteph sums it up nicely. We are a family with one parent and three children that are super sensitive. We react to gluten in places that typical celiacs do not. Some (maybe all?) of us in my family also have gluten allergy, so we get the privilege of recognizing gluten in ways that many celiacs may not.

One comment I do want to make is about this:

Super sensitives need to limit their consumption of gluten free processed foods.

I think that ALL celiacs need to limit their consumption of gluten free processed foods, as even Dr. Fasano states that a 20 PPM ruling only allows celiacs to eat about a pound of "gluten free" food per day - that is his general comment about general celiacs made based on a study that eliminated super sensitives and on such a severely small percentage of the population with celiac (97% of celiacs remain undiagnosed according to the University of Chicago Celiac Research Center).

But, yeah, as super sensitives, we react to gluten in places that the currently diagnosed celiac population has generally not yet complained about (or is it that the complainers were unable to fund the research to demonstrate their point?). Our doctors just shake their head in wonder and continue to document our gluten hypersensitivity. There really isn't much more to do than that at this point.

And there are some good companies out there trying to help celiacs achieve wellness while still maintaining our supplies of processed foods, so you don't necessarily have to get out of the food business all together. Yes, I know that they are rare, but there are some that I think are admirable in their efforts . . . not that I know the ins and outs of their business all together, but they seem to be taking extraordinary precautions in their efforts to produce safe food. And there is always the option of starting your own food business too! I have supported a local gluten super sensitive food manufacturer extensively over the past two years.

[T.H.]

At this point, my own personal definition is that:

The average celiac can have average servings of <20 ppm of gluten gluten-free food throughout the day and will not react.

The sensitive celiac can have <20 ppm gluten-free foods throughout the day, but may reach a threshold and react if not careful of quantity.

The super-sensitive celiac is unlikely to tolerate much, if any, of the <20 ppm gluten gluten-free products.

With all of these, I think there's really a range. I know some celiacs who have a clean bill of health, and they never seem to react, and yet eat at places that make other celiacs quite ill. I figure they're like the opposite of a super-sensitive celiac.

I know that even with the group of folks I would consider super-sensitive, there is definitely a range. I know some who can tolerate foods that are 5 ppm of gluten, and I know some who get very ill on foods with that amount of gluten.

[violentlyserene]

Where do celiacs who don't react to anything but something like a piece of cake fall on that spectrum?

[mushroom]

Where do celiacs who don't react to anything but something like a piece of cake fall on that spectrum?

My personal opinion is that that celiac would fall on the "playing with fire" part of the spectrum

[Lisa]

Where do celiacs who don't react to anything but something like a piece of cake fall on that spectrum?

Yes, I agree with Mushroom! Being non-symptomatic, requires far more diligence.

[violentlyserene]

My personal opinion is that that celiac would fall on the "playing with fire" part of the spectrum

If they ate it, certainly! If they don't react to anything less than that, does that mean they can put themselves in the average celiac category and be careful or is that more towards non reactive celiacs who need to be super careful?

I seem to have missed your point. I'm curious since that's roughly where I fall right now and can't tell whether I'm being crazy paranoid or sensible. My instinct says sensible but since it also says EAT ALL THE WHEAT...

[mushroom]

If they ate it, certainly! If they don't react to anything less than that, does that mean they can put themselves in the average celiac category and be careful or is that more towards non reactive celiacs who need to be super careful?

I seem to have missed your point. I'm curious since that's roughly where I fall right now and can't tell whether I'm being crazy paranoid or sensible. My instinct says sensible but since it also says EAT ALL THE WHEAT...

The problem with celiac disease is that it is not just an autoimmune DIGESTIVE disorder. Celiac disease works on the nervous system, your joints, the thyroid, the pancreas, the skin... so many other body parts and you may not be aware what harm it is doing to you until you wake up one morning with rheumatoid arthritis, Type II diabetes, hypothyroidism, lymphoma, lupus, pancreatic cancer.

So the sensible celiac does his/her best to avoid ALL gluten. If a little does sneak in it is usually not too much of a problem unless you are a super sensitive where it can be a big problem. So you should never set out to eat any gluten. Some of us can eat products that are processed in facilities that also process gluten; some of us can't. Some of us can eat products that are made on the same lines as gluten products, because they clean the lines thoroughly first; some of us can't. Each person finds their own level of sensitivity. If you do not react then you will probably just have to decide how much of a risk you are willing to take.

[T.H.]

Where do celiacs who don't react to anything but something like a piece of cake fall on that spectrum?

I suppose if there was a 'not as sensitive the average celiac,' that might apply...it feels wrong to call people with this 'insensitive celiacs,' eh?

Or it could be someone who is a silent celiac, as damage can be done without any overt symptoms showing themselves.

However, I know that in a recent survey of multiple studies that looked at Celiacs' healing, there were some people who cheated fairly frequently on their diets and had healed villi and low antibody levels, so you never know, it could be that if there's super-sensitivity, there could be the opposite, too, you know?

[Di2011]

I suppose if there was a 'not as sensitive the average celiac,' that might apply...it feels wrong to call people with this 'insensitive celiacs,' eh?

Or it could be someone who is a silent celiac, as damage can be done without any overt symptoms showing themselves.

However, I know that in a recent survey of multiple studies that looked at Celiacs' healing, there were some people who cheated fairly frequently on their diets and had healed villi and low antibody levels, so you never know, it could be that if there's super-sensitivity, there could be the opposite, too, you know?

A good comedic response! Thank you! I needed to read this today

I had a few (4-5) small bits of squid that were supposed to be corn flour .. stupid me .. possibly not just corn and probably in a shared fryer. I started itching immediately, grumpy with the family soon after and scratched all the way home. I had a strange new symptom to add to the list - a nerve pain unlike any other I've had anywhere in my middle toe. The past 3 weeks I have been super strict and this included 4 days away again. My suitcase was about 2 kilograms of what I knew to be safe food, fruit (which I had to put in the bin because of quarantine ((another lesson)) ) I located shopping etc quick and now I am home four days later and the skin/nerve reaction/digestion etc are still in reasonably good order ..

People use to, a long time ago, like my sense of humour and maybe that is also recovering :D :D

[T.H.]

I had a strange new symptom to add to the list - a nerve pain unlike any other I've had anywhere in my middle toe.

Oh man, that sort of thing is SO weird when it happens! I'll get some weird nerve pain in the joints, but it'll be just one joint in my pinky, or one area of my toe, etc... What the heck is up with that? So weird, isn't it?

People use to, a long time ago, like my sense of humour and maybe that is also recovering

I wonder how many of us end up feeling this way? I used to love to tell jokes and silly, snarky comments, and it all kind of faded away with the depression and pain. Just really in the last few months I notice I'm enjoying life more, laughing more, being able to play and be silly with my kids again. Makes me sad that they got to see so little of 'that' me all these years, but at least now I don't feel like I lost that part of myself forever, you know? I hope that the same turns out to be absolutely true for you, too! :-)

[Charli61]

The more posts I read, the more AHA moments I have. Guess maybe I am pretty sensitive too, thought a lot of my issues (joint pain and nerve pain) were just 'me' Sad to say it appears lots of us have these issues.

And, note to self............Keep smilin' Life is good!

[beebs]

I am undiagnosed and can't afford medical treatment at the moment.

Sometimes we have to go with what works for us so please don't be afraid to experiment with diet and exposure despite what "tests" indicate.

I had problems earlier ( NO breakfast, no fan of pasta, pizza etc etc; bloating, gut sleeplessness etc etc etc etc) but working in a bakery for 9months (2010) created the real and obvious problem. I thought ingesting wheat / glutens might be my problem but after a few months off gluten I know now (I work in kitchens and with lots of breads and toast around I have been able to track) I can't handle the floating glutens in a normal kitchen. Eating now has nothing to do with my undiagnosed gluten/wheat problem but is about getting a new job out of the food business.

From reading a lot online and particularly on this forum it is really obvious that everyone has their own particular onset and ongoing issues with gluten. From reading experiences on this forum I think I probably have about a 18 months (MINIMUM) to get things sorted.

I have been researching and reading so much but what does "super sensitive" mean to you? There doesn't seem to be medical definition

Nothing to do with Super sensitives but because you have bakery experience maybe you should get a job at deeks - grain free bakery/cafe in Canberra. Open Original Shared Link

[Di2011]

Nothing to do with Super sensitives but because you have bakery experience maybe you should get a job at deeks - grain free bakery/cafe in Canberra. Open Original Shared Link

It is a great cafe/bakery! But unfortunately I look at bread, cake etc now and my body/brain almost have a seizure Even walking past it all in the supermarket makes me nervous.

[lovesaceliac]

I'm also trying to figure this out (without health insurance.) Last time we forked out the bucks to go see a gastroenterologist was about 9 months after my husband went gluten free. Within a week of the new diet he said, "I'm never going back!" and in a month he had lost 20 lbs and regained a color, postive mood, and general health that I hadn't seen in him for over a decade. We were thrilled! About four months later, all the old symptoms started coming back: joint pain, insomnia, depression. So we changed to the name brand form of the prescription he takes that we could be sure was gluten free. Once again, feels better. Another four months later, all the old symptoms start coming back. Ok, pay for a doctor's visit. Dr. says he's positive husband has celiac disease, but that he'll have to go back on gluten to have it diagnosed. Husband says, "no way!" He's going to stay gluten free because he knows from first hand experience that it's the right thing for him. So I convince him maybe he's getting cc'd at home and the whole house needs to be gluten free. He hates to inconvenience us, but agrees. Again, feels better.

Now we've spent over two years gluten free. We've learned a lot. The house is gluten free. We know where to look for disguised sources of gluten. We only buy products specifically labled gluten free (i.e. we spend A LOT of money on groceries.) And now all these restaurants are coming out with gluten free menus...but he gets glutened all the time! He's been glutened at PF Changs, horribly glutened eating the "gluten free" pizza at BJs, and by so many other meals ordered off of "gluten free" menues. As a result, we just don't go out hardly ever and if we do, it's to one of the two 100% gluten free restaurants in our area (both expensive, neither filling.) I watch a friend of mine who has celiac disease selecting the "gluten free" items off the buffet at a church party...all surrounded by fried chicken and biscuits and think there is NO WAY my husband could eat anything there without getting totally sick. I see people on these forums recommending pizza joints that now have gluten free pizza. There's no way he could eat a gluten-free pizza from a pizza place that also makes wheat crust and survive it. Traveling is so frustrating. I try to do searches for gluten free restaurants and can't trust any of the results. Are we doing something wrong or is he just that sensitive/different from "normal" celiacs? Yes, I know the response might be that there are reactions to other foods. We've explored that, we know he doesn't do well with too much milk or processed sugar - but would the reactions to other foods be identical to the gluten reaction? The gluten reaction is pretty miserable and pretty consistent (a three day progression of symptoms that we both can almost set our clocks to.)

Way too long of a post. Needed a little rant. Hoping for some encouragement. I think my usually supportive self is being undermined a little by the approaching holidays and the realization (again) that there won't be any apple pie. Dumb thing is, I don't even like apple pie. I just loved making it for him. I'm an artist and I used to make beautiful crusts. You can't make a pretty gluten free pie crust. I can't at least.

[Di2011]

lovesaceliac - what an appropriate name for you! You are an amazing wife. AND you have just as much reason to have a rant every now and again. We do so you should too. Better than having a breakdown huh??

Sorry but I can't give you much advise about other food allergies. I'm still learning so much and on my basic diet there isn't much to get allergic too

Have you checked and cleared the cleaning / bathroom products?

Don't forget to take a look at your clothes washing detergent. Years ago I stopped using any of the powdered type because it irritated my skin. I use a cheap but simple (limited ingredients eco type ((I'm in Australia - Aussie product)). I've been using it for years and is economical and no problems with the skin.

I don't travel or eat out much but am lucky there is restaurant up the road that I use to work in. They change their fryer oil and the friers are seriously cleaned everyday, religously. The chips/fries are gluten-free and they rarely use the dedicated chip frier for other items. I know them and they know my problem so I just have to check with them that nothing evil has made it into the chip fryer. I can have a really yummy steak on stonegrill (cook at table on hot stone yummo) salad and chips. Not once had a problem.

I'm not sure I'll eat out anywhere else until I can replicate this arrangement.

I've had a couple of weekends away. The first was a disaster and what finally sent me down this path to superGlutenFree.

At one place there was a restaurant down the road and my marvelous Mum went down and spoke to the chef. She convinced me that he was very attentive to her questions about me eating there. So we get there for dinner, order the gluten-free dinner and out comes this yummy looking chicken, salad and... battered chips. Some people mean well.

The second weekend away I ate a lot of fruit, Avocado/tomato and rice thins, and one very reliable gluten-free brand of cereal. I was hungry but it got me through.

I try to stick to no more than one processed (cereal, rice noodle, rice/cornthin) serve a day - hard but now seeing some serious improvement in the DH yeehaa :D :D

Its been a long six months of experimenting and reading though... About time I get a life, a decent job and earn a living. That is my next experiment. I don't think I'll be hanging out in any lunchrooms/cafes

[Di2011]

Tell me more about your diet? What do you all like to eat?

[T.H.]

Are we doing something wrong or is he just that sensitive/different from "normal" celiacs? Yes, I know the response might be that there are reactions to other foods. We've explored that, we know he doesn't do well with too much milk or processed sugar - but would the reactions to other foods be identical to the gluten reaction? The gluten reaction is pretty miserable and pretty consistent (a three day progression of symptoms that we both can almost set our clocks to.)

From the people I'm meeting, it seems that for some, the symptoms are the same for other food issues AND for the gluten reaction. Often, these seem to be broader symptoms, like the gastro trouble that can hit for both gluten and lactose intolerance. If the symptoms are very consistent, however, especially in a precise pattern, that seems to be gluten specific most of the time that I've seen. At least, that's how it seems to me on reading others' posts, and that's been my own experience.

At first, I wasn't sure what symptoms went with what on my own diet, but after a while, there emerged a pattern with getting glutened that is distinct from other food reactions. There is some cross over of symptoms, but the same pattern of symptoms is the key, for me.

So it's entirely possible he's just that sensitive. Which I agree, is frustrating as heck! My daughter is in the same boat, where she kept getting glutened at restaurants more and more until we just don't go. I still remember my first time going to our Celiac Group meeting. We'd been trying to go out to eat, doing all the things we were reading on the web about talking to the manager and being careful, and still getting sick.

I was thinking that the group would have some great insights that would help us figure out what we were doing wrong, you know? Because that's what you think at first: I must be doing something wrong, because none of this is working for me.

They were a lovely group of people, very helpful and sweet, but they recommend all the restaurants that we'd all gotten sick at, and the products that we were getting sick from, and it was so upsetting to get all that great advice and have it be of no help at all. I remember wondering why in the heck we couldn't do it, because it seemed to be working for everyone else.

Hooking up with other folks who have to be just as careful, whether for gluten reasons or other food issues combined, has been of great help. Sometimes just because it helped to realize we weren't alone in this. Recipe ideas and thoughts on travel from people with similar problems have been invaluable. Even knowledge about restaurants that are completely gluten-free in different areas of the country (or countries), like the one called Picazzo's that we found in Arizona, have been so helpful.

Wish I had better advice on the restaurants, but that's one hurdle we're still unable to overcome ourselves. I'm just trying to find more outdoor venues for eating, at parks and such, where the kids can play and we can enjoy the good weather. So eating out is kind of seasonal for us now, LOL.

And just a big freaking hug re: the apple pie. I am a pretty bad cook, but the ONE thing I could make was pie, usually apple or blueberry, which I'd make for my hubby because he loved the stuff. And now I can't have the flour to make it in the house. And there's just something sad about that. It does feel a little silly to mourn something that we're not even eating, but I think it's more about the, I don't know, tradition and a way to express our affection for each other that's just gone all of a sudden.

Like being told you can no longer hold hands. Maybe you didn't hold hands a lot, but being told you can't do it anymore, you'd miss it, you know?

Again, I'm a terrible cook, but there was something we were messing with last year that might be something you could work with? We got baked sweet potato, then got orange juice we boiled until it had reduced to 1/2 or 1/3 the original volume. Mixed the two together.

Then chopped and peeled apples.

I think when we tried it, we spread the apples with seasonings and sweetener on the bottom of a pie pan and spread the sweet potato on the top and baked it until done. Might've cooked the apples a little ahead of time. But...maybe you could work with something like that, put decorative apples along the top, that sort of thing, make it pretty? Like sprinkle tiny chopped up apple mixed with something sweet along the edge of the pan on top of the sweet potatoes? (I know, bad cook...I have no idea how that would even taste, LOL)

Not the same, I know, and wasn't sure if a substitute is one of those things that would make the loss sharper, or if it would help.

If something else might be nice for dessert, I know your hubby has to keep dairy low and sugar low, so this would be a dessert he'd only be able to have a teeny bit of at a time, but if you care to make a cheesecake, I think this may be the best freaking cheesecake recipe I've ever seen in my life, ever. It's crustless, too. People fought over getting the last piece when I last brought it to a party. :-)

Open Original Shared Link

Took like 4 hours to make the thing for us, but from the reactions on eating it, it was worth it. :-)

[Di2011]

Yet again T.H. comes to my rescue.

I owe you a good truely great gluten-free meal.

You must be one hell of a woman :D

[T.H.]

I"m glad it helped!

Heh, I don't know about one hell of a woman, but my tween daughter told me her friends voted me the coolest mom they all knew, LOL.

....which probably means I'm so immature I can bond with tweens, ha!

[lovesaceliac]

Wow...thanks for the compassionate responses. This forum has been so theraputic for me. My first night on, I was up most of the night feeling so validated by reading what seemed like our experiences over and over again. It was so nice to feel like we weren't crazy when even loving family members had a hard time masking their disbelief that this is "real."

It really is mourning isn't it? I just grew up watching my mom make pie for my dad. I am surrounded by a culture of women who bake bread for their families. Thanks for the cheesecake suggestion...I had kindof forgotten about that. I had been wanting to try a white chocolate rose cheesecake a few years ago - maybe I'll pull out that ambition again. And will definately try out your recipe. I'll also go looking for holiday ideas. I bet there's lots out there.

I made a pumpkin pie last night and it turned out great. I guess single crust pies are the way to go (since the gluten-free crust is iffy, might as well do pies that don't need too much of it.)...oh, and I'm not a great cook either. That's why I have to rely on my food looking good!

I guess I should be thankful that there are the two 100% gluten free restaurants in our city. That's probably more options than some have. It's just frustrating - while I'm thankful that there's so much new awareness I also get discouraged seeing restaurants on the state's celiac organization's website that he's been glutened at.

Could we somehow create an "approved by super sensitive celiacs" restaurant list!?

[lovesaceliac]

Tell me more about your diet? What do you all like to eat?

That's hard to answer. I feel like I'm still figuring that out (almost three years later!) My husband is the great cook in the family and as a matter of scheduling/division of labor - I do most of the cooking. We love ethinc food and I'm not great at that kind of cooking. That's where we really miss going out: Indian, Thai, Veitnamese, Ethiopian - how I wish we could go out for Pho! And that's where I get really frustrated. Folks on these forums talk about accomodating managers and servers who explain ingredients...but I just can't trust any restaurant, well meaning or not. I've been guaranteed by restaurant staff that the kitchen manages cc...and then we've lost three days of our lives while he's sick. It was about a year ago that we had to write off all restaurants. Funny that I envy other celiacs and long for just plain old gluten intolerance! I need to find time to take some cooking classes.

[Di2011]

That's hard to answer. I feel like I'm still figuring that out (almost three years later!) My husband is the great cook in the family and as a matter of scheduling/division of labor - I do most of the cooking. We love ethinc food and I'm not great at that kind of cooking. That's where we really miss going out: Indian, Thai, Veitnamese, Ethiopian - how I wish we could go out for Pho! And that's where I get really frustrated. Folks on these forums talk about accomodating managers and servers who explain ingredients...but I just can't trust any restaurant, well meaning or not. I've been guaranteed by restaurant staff that the kitchen manages cc...and then we've lost three days of our lives while he's sick. It was about a year ago that we had to write off all restaurants. Funny that I envy other celiacs and long for just plain old gluten intolerance! I need to find time to take some cooking classes.

Oh my I know how it has been for you! I have always loved anything that wasn't "meat and 3 veg" (not sure if that is an Aussie saying). Lots of flavour, spices etc

I'm reckoning that Asian (Indonesian/malay/korean/japanese etc) from scratch might be my saviour. Lots of rice, fresh spices etc Once upon a time and until very recently the Asian nations didn't do wheat anything.