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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.

Super-Sensitives--How Often Do You Get Glutened?
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17 posts in this topic

We talk a lot in this section about unusual things that glutened us. One may get the impression that we are living every single day still sick and in misery and afraid to touch anything or eat anything. I just wanted to share that for me, personally, when I'm as strict as I need to be I don't get sick with my glutening symptoms. I have not gotten glutened for over a month and that was from multiple instances of gluten exposure by family members that ignored my requests that they not bring gluten into my home. Prior to that I went a good 6 months without getting glutened and felt great. I feel fine now other that the remnants of a head cold my husband brought home from work (he was sick first with the same symptoms so I know it's not gluten related in anyway, it's just the beginning of cold and flu season). Anyway, I do talk a lot about things that have glutened me in the past so people may assume I'm always sick. The reality is that this super gluten free diet is working for me. I'm healthier (and happier) than I have been in probably my entire life. I have a long list of symptoms that have gone away with the implimentation of a super strict gluten-free diet. I have some additional health conditions that still bother me from time to time but gluten is not the cause of most of my instances of illness, BECAUSE of my super strict approach.

So I was wondering, for those that have been super gluten-free for a long time has it helped? How often do you get glutened? I would love to read some other success stories!

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I'm really interested in reading some of these responses. I have come to the realization that I have to be super strict now. On Sunday, I was glutened at the pumpkin patch of all places. My neices and I were unknowingly playing in the "hay" wheat straw maze.

I am giving up all processed gluten free products b/c I really tend to overeat these and it all adds up and I get glutened.

So to answer your question..Not very long for me. A month or so. At that time, I start feeling good so I start missing all of the gluteny foods that I use to have and go buy something gluten free..like cookies..eat the whole entire box in one sitting and get zapped. It's a vicious cycle for me.

I'm going to start living by a nothing out of a box/bag policy.

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I'm really interested in reading some of these responses. I have come to the realization that I have to be super strict now. On Sunday, I was glutened at the pumpkin patch of all places. My neices and I were unknowingly playing in the "hay" wheat straw maze.

I am giving up all processed gluten free products b/c I really tend to overeat these and it all adds up and I get glutened.

So to answer your question..Not very long for me. A month or so. At that time, I start feeling good so I start missing all of the gluteny foods that I use to have and go buy something gluten free..like cookies..eat the whole entire box in one sitting and get zapped. It's a vicious cycle for me.

I'm going to start living by a nothing out of a box/bag policy.

If I ate a whole box of gluten free cookies, I would expect to feel like "Horse Pucky"! Not from gluten, but from over consumption. :rolleyes:

Although this is a Super Sensitive Thread, it's important to note that most, if not all gluten free products are safely consumed by the general Celiac community.

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So I was wondering, for those that have been super gluten-free for a long time has it helped? How often do you get glutened? I would love to read some other success stories!

I was diagnosed as celiac in August 2009. For the first couple of months I messed up a few times because I wasn't completely used to the diet yet but I'd say I've been 'super gluten free' as you put it since for almost 2 years now.

I feel 100% better..all the horrible symptoms I had disappeared..and now I very rarely get glutenated. I may have felt a little off and had a couple of symptoms return a few times over these past 2 years but I can certainly say that I have never had a day when I felt like I did before I was diagnosed and started my gluten free life.

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If I ate a whole box of gluten free cookies, I would expect to feel like "Horse Pucky"! Not from gluten, but from over consumption. :rolleyes:

Although this is a Super Sensitive Thread, it's important to note that most, if not all gluten free products are safely consumed by the general Celiac community.

LOL, well there were only 6 cookies in the box and they were the size of quarters. ;)

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I think the longest I've gone without reacting has been 2 months. I've only been gluten-free for 2 years now, and super-gluten free for about 1 of those years.

At first (and still a little), the reactions were because the list of safe foods I can have is not nutritionally complete. At my Dietician's advice, I would look into supplements (all failed) and many different types of foods to try and get the right nutrients. Most of the time, they'd make me sick. That improved when I started looking into native foods in my area that I could grow or forage for some of my missing nutrients. Still not perfect, but much better.

Now, when I'm very strict with my diet, stay out of grocery stores and bakeries and most restaurants (inhaled gluten gets me, big time), then I'm great. I have energy, my symptoms are gone, it's awesome. I tend to go out hiking and doing things that don't put me in crowds where there is lots of food around me. I feel rested and relaxed, with all the irritation and anxiety I used to feel just gone.

Considering how limited my diet is now, and how much I have to think about food and cc during the week, I'm always amazed anew at how much LESS depressed I am now than before.

My trouble with getting glutened now comes mostly from trying to travel. Starting the end of last year (only a little while after I figured this all out), about every month and a half, we have to go to another state for a week or so. I have not yet made it through a visit without getting ill at least once. At first, it was just that learning curve, you know? My whole house is gluten free, so I know how careful I have to be there. When I'm away, at a friend's house or a hotel, I've had to slowly figure out what to do.

Usually, I screw it up the first couple times. I'll think I've planned it all, and I would always forget something, whether that was an actual item, or a potential way to get cc'd that ended up biting me in the behind. It's been a slow process of continually learning about what is actually a gluten cc hazard, what seems to make me sick, and the lazy idiot in me has had a bad habit of trying the 'less effort' way first, which usually means I get sick more often. And I KNOW I do, I just have, I dunno, a good angel on one shoulder, and a lazy angel on the other who's poking her with a stick.

The good news is that I get a little better at it every time, and I trust myself a little more, so I don't do stupid things to get myself sick as often. Hoping that continues so that soon, I can go for months and months without an issue.

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What a good idea for a thread! I get the idea that some people in this forum think that we are not super sensitive at all and that we really have other illnesses that are as yet undiagnosed. The fact that we are in very good health between glutenings, and that we are usually able to identify the source of our glutenings is good support for super sensitivity. That and the fact that we have been tested for everything other possibility and the tests came back negative. Add to that that our doctors agree that we are super sensitive.

There are also the newly diagnosed super sensitive celiacs. They remain sick despite being on a gluten free diet. They are trying everything and losing hope. Often their doctors have run out of ideas. Not very many doctors know about super sensitivity. Hopefully this will help them.

I have gone months between glutenings feeling very healthy. I even ran a mini triathlon. I also worked for hours outside this summer improving my vegetable garden. When it came to shoveling and carrying buckets of compost I kept going when hubbie, who is not a super sensitive celiac, kept having to rest, or go into the air conditioning.

Now, there are glutenings and there are glutenings. I have noticed that very low levels of cc in something won't bother me sometimes until I have been eating it for a month or so. It might take a few months until those symptoms build up to the point where it feels like a full blown glutening. To avoid getting to the full blown glutening stage, I have tried very hard to notice much more subtle early warning minor symptoms.

I could go longer between glutenings, but I keep thinking that I will be able to find some product that I can actually tolerate. Once I give up on that I'll be good. This summer I got 3 more covered raised vegetable garden beds put in, to add to the two that I had last summer. It will be a lot easier not to get glutened now that I'll be able to grow more of my own.

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This is a little bit off topic but what usually zaps me is something labeled as gluten free but when I eat it and get sick, I check the website and it's not dedicated equipment or they handle wheat in the facility.

I recently called up General Mills after reacting to chex. They advertise like crazy in TV that it's gluten free. One would think wow, this is really great. After getting zapped, I called them and they told me that it's gluten free and tested occasionally but it's not made on dedicated equipment or a dedicated facility but they wash and sanitize. mmmmhmmm

Edited by GFreeMO
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I am super sensitive to gluten, if I breathe it I get sick, if someone shakes my hand and they have just eaten a sandwich I get sick, if I am around too many people I get sick, I haven't eaten anything gluten in 2months it is just those occurrences, when does it get better?

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I am super sensitive to gluten, if I breathe it I get sick, if someone shakes my hand and they have just eaten a sandwich I get sick, if I am around too many people I get sick, I haven't eaten anything gluten in 2months it is just those occurrences, when does it get better?

Sorry to say this but for me it was an entire year before I had mastered the diet and cc issues well enough to go for months without getting glutened. I had strentches of times that were maybe a month or two and then I would try eating out or try a new product and get sick again. If you are super sensitive you just have to not take as many risks and learn to be hyper aware of your body and your surroundings. Noticing when you shake someone's hand or touch something in any public place and remmembering not to touch you face until you can go wash your hands will help. Some people just avoid shaking hands and wipe things they need to touch (like shopping cart handles) with wipes.

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I got diagnosed five years ago, where the doctor said my numbers were the highest he's ever seen. I want strict gluten free from day one and haven't cheated once. Wish I could say I feel great, but the truth is I rarely do. It took my a good two years to start feeling better and even still I have more bad days than good. It's very discouraging.

One of the things I am very sensitive to is eating too much at one sitting. It absolutely kills my stomach for hours.

Now giving up soy and milk. We'll see...

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My Miss 8 is very sensitive but my whole family is now gluten free for her. My little bro was anyway because his Autism is better on the diet but now my older brother and his family are and my mum went gluten free with us. Much of what we eat is made from things grown in my garden or the garden of my brother or my mum.

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I removed gluten from my diet in July and have felt so much better, and then all of a sudden I get sick. I'll stay sick for about a week, and then I feel better again--and then BAM. Sick again. It's been difficult to discern whether this is due to residual damage (my gut hasn't had time to heal), or whether I'm dealing with super sensitivity. I have had some obvious glutenings (off-brand tylenol, for instance), but other times it's not so clear where it's coming from. Not to mention they haven't been able to confirm my diagnosis yet, so I still always question in the back of my mind whether gluten-free is even the issue for me. Very frustrating! It is true that the more processed foods I eat, labeled gluten-free or not, I end up sick in the end. I had some Seeds of Change Quinoa the other day, no gluten ingredients, but got so sick. I looked up their gluten statement, and sure enough, they don't clean their lines between batches. So I guess that was it. But then I think, could it have been the gluten-free rice crispies I ate? Or maybe someone double-dipped in my PB jar at work? Could it be the scratched non-stick pans in my kitchen at home, which I share with gluten-eaters? It's so scary to think about all of the possibilities. I guess eliminating processed foods for a while and then putting them back in one at a time is probably the best way to go!

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... But then I think, could it have been the gluten-free rice crispies I ate? Or maybe someone double-dipped in my PB jar at work? Could it be the scratched non-stick pans in my kitchen at home, which I share with gluten-eaters? It's so scary to think about all of the possibilities.

I think that has got to be one of the most frustrating things about this disease, honest to god. Without being able to visually see gluten, how does one tell if it was in our food, or where it was, or if it wasn't even gluten or something else, and so on. We end up having to basically use ourselves as guinea pigs and getting sick over and over on similar products, just to rule 'em out. <_<

I know that limiting the diet a lot definitely helped me track down the various foods that were issues, both with gluten cc AND allergies. I ended up doing the same for my kids, although not quite as limited a diet, and it made a difference there, too. I think it made for less time with us sick, because we could narrow down the reactions more rapidly, if that makes sense?

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Very frustrating! It is true that the more processed foods I eat, labeled gluten-free or not, I end up sick in the end. I had some Seeds of Change Quinoa the other day, no gluten ingredients, but got so sick. I looked up their gluten statement, and sure enough, they don't clean their lines between batches. So I guess that was it.

You cannot acuse companies of blatantly ignoring FDA laws. This is from thier website. It says they clean between products.

What SEEDS OF CHANGE® Products are gluten-free?

All SEEDS OF CHANGE® Pasta Sauces, Simmer Sauces and Salad Dressings do not have ingredients containing gluten. Some of our Rice & Grain side dishes and Ready-To-Heat Rice do not have ingredients containing gluten. Chocolate Bars are not gluten-free.

All SEEDS OF CHANGE® food products are manufactured on production lines which produce items that do contain gluten. In the manufacturing facilities we perform a thorough cleaning of the production lines between production runs (hot water / sterilization / high pressure air). Although we use good manufacturing practices, there is no way we can guarantee that the lines are 100% free from cross contamination. Good Manufacturing Practices or GMPs is a term that is recognized worldwide for the control and management of manufacturing and quality control testing of foods and pharmaceutical products. GMPs are enforced in the United States by the U.S. Food & Drug Administration (FDA).

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I have been strictly gluten free for almost two years and felt better from the start.

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I have been strictly gluten free for almost two years and felt better from the start.

Do you tend to get glutened much at all from gluten cc, at this point?

You've made me curious! :D Did you drop processed gluten-free foods from the beginning, by any chance? Or follow a grain free diet? I know the processed gluten-free foods were what used to make me sick the most often in the first couple of weeks. Now the worst ones are the gluten-free flours and other gluten-free grain products, I think.

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