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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.

Yeaaaa - Sharing.
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17 posts in this topic

I'm just sharing happy news for me.

I've been gluten-free for 20 months now. I was diagnosed with blood tests and endoscopy, and then had another 'tummy check' a few months after going gluten-free. I had 'visible to the naked eye' damage the first time, and the GI was concerned because for round 2, I didn't look like I was healing. He thought we still needed to find some answers to what was bothering me, since he knew I was very diligent about my diet.

A few months after that was when I discovered the whole 'super sensitivity to gluten' thing, so my diet has been very different between then and now.

Last week, I had my check up endoscopy. The gel and stuff for going down my throat left me with nasty vertigo that I'm still recovering from, BUT...no visible damage! :-D Yeaaaa! He took biopsies from my stomach and upper intestines, just to check for everything and make sure it's as good as it looks, but...I can't even express how nice it is to know that all this work I've been doing and all my being super, super careful for months now has actually WORKED! It has improved, woo hoo!

Man, just so happy now.

Hoping the biopsies come back perfect too. Just had to share the preliminary joy, first, though, you know? While I still can, LOL.

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Great news! I'm glad you're finally healing. You're such a wealth of info for all the new people that come here asking about how strict they need to be and now you can say it made a visible difference for you to eliminate cc! :)

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Whooo! Hooo! (Happy Dance) :lol:

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Congratulations , your diligence and hard work has paid off in the best way possible ,your GOOD HEALTH :D

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I'm so happy for you!!! Congratulations! That's great news! :)

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Congratulations!

I have a question though. Are you saying that:

1. you had a endoscopy and had visible damage

2. started the diet and felt fine, but still had damage

3. went super strict and now there's no damage?

What I am asking is, if you hadn't had the endoscopy in the first place, would you be feeling fine now? Would you have any reason to think you had a problem? Or did you have other reasons to make your diet strict?

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That's wonderful!!! Congratulations.

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Thanks for all the good wishes, guys! I'm still kind of smiling like an idiot, LOL.

I have a question though. Are you saying that:

1. you had a endoscopy and had visible damage

2. started the diet and felt fine, but still had damage

3. went super strict and now there's no damage?

Not exactly. Yes to #1 and #3, but no to #2. I started the diet and felt worse than before I went gluten free. I found a few mild food allergies and avoided those, too. Some problems were eliminated with that, but I was getting increasingly worse neurological issues that we couldn't figure it out. That was also the time I had a second look down the gut (I started with one GI, and ended up with a second, better one). I still had a lot of blunting and inflammation that didn't look like my gut was healing much at all. My weight was falling like mad, too, until I dropped so much food I was down to less than 10 things I could eat.

I went for nearly a year with no real improvement. ALL new foods I tried made me either feel terrible or start to drop weight again, and none of the specialists could figure out why.

Then I was contacted by a wonderful gal who mentioned that she was super-sensitive, and wondered if I had looked at that. After talking to a lot of other sensitive folks, looking at what brands/foods they had eaten, and discovering one item I ate every day was on their 'bad' list, I had enough clues to work my way to a safer diet. I FINALLY started to get rid of the nagging problems like headaches, vertigo, memory problems and brain fog, muscle and joint aches. My weight normalized. My allergist even took notes and measurements to record how I was doing, because he was so impressed with my improvement on the 'super, super gluten free' diet.

It is still very hard to find food that doesn't make me react with neurological symptoms - I had a nasty reaction just a couple days before the endo, even. So before this procedure I was not sure if my gut had healed or if it might reflect some of the issues I have had with neurological problems.

It's been wonderful to find out that my gut is actually doing well. I am hoping that soon I will have a completely safe, nutritionally complete diet that won't give me 'brain' issues, either. So happy to know that I'm probably absorbing what I eat, even if my nervous system goes a bit fritzy on me sometimes. :D

shauna

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That is wonderful! :D I know you have worked really, really hard at it!

Did they check your leaky gut too? Is that healed up or just the villi at this point?

You are an inspiration T.H! :wub:

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Hi. It is so inspiring to hear a positive story. Keep up the good work.

I, too, didn't feel a lot better for 2 - 3 years after I went gluten-free. That was 10 years ago. This site didn't exist then, so I was on my own to figure out what was making me ill. Knowing I am super sensitive has been such an important step.

I would eat something like corn chips and back then no one wrote on the bag that it was manufactured on a line that had wheat products. I didn't know how to order food in restaurants and most waiters didn't know what celiac is. Today is quite different, thank goodness.

I use to say constantly, Where is the gluten hiding? I know all newly diagnosed people end up asking that. It was so frustrating (still is sometimes) to eat something you think is safe and find it is not. I tried out a gluten free cereal the other day and was ill for the next two days. Last time I am trying that brand.

I ate some organic corn tortillas (Food for Life) tonight and am feeling great. Wow, what a find. Have you found them to be safe consistently?

To get back to total gut healing after severe damage to the gut... I read in one of my holistic healing text books on the digestive system that it can take a full year minimum to reestablish balanced gut flora with a perfect diet and supplement protocol (with no anti-biotics). Most of us don't have perfect diets and eat too much sugar which feeds the imbalance. I took acidophilus nightly, chlorella to deal with heavy metals released from dying candida, and mangosteen juice (Xango) for about a year and finally stopped having all the "other symptoms" of intestinal dysbiosis. That was 7 years ago. I was generally great until about a year ago when it seems the content of "gluten free" food changed. Now I have given up most of them and make stuff from scratch. Last night I made a fresh coconut cream pie with real coconut, dates and macadamia nuts. It was fabulous. The coconuts were a big job to open and process, but worth all the work.

Getting the flora in the gut balanced is of most importance. I had had stool analysis done a number of times, so know when I finally got it balanced well enough to be healthy.

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This site didn't exist then, so I was on my own to figure out what was making me ill. Knowing I am super sensitive has been such an important step.

I am so impressed that you figured it out by yourself! I have no idea how I would have had a clue without so many people who helped me out.

I ate some organic corn tortillas (Food for Life) tonight and am feeling great. Wow, what a find. Have you found them to be safe consistently?

Food for life has really zapped us in the past a few times, actually. There has been some trouble with them in the last few years listing things as gluten free when they actually used barley water in the processing, that sort of thing. So I tend to avoid them.

And now I've got the final results back and STILL HEALED. Ha, take that, gluten, you evil so-and-so! No inflammation, not even a little smidge of blunting. It makes me SO happy, and also kind of feeds my curiosity over whether I can get neurological problems from gluten without gut damage (like was mentioned in a couple studies). And I had neuro symptoms a couple times the week before the endoscopy, and nothing showed up in the gut. So looks like that's a 'yes' for that column, eh?

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what is the super super gluten free diet or where can i find it?

congratulations on having better results and healing.

best wishes!

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No inflammation, not even a little smidge of blunting. It makes me SO happy, and also kind of feeds my curiosity over whether I can get neurological problems from gluten without gut damage (like was mentioned in a couple studies). And I had neuro symptoms a couple times the week before the endoscopy, and nothing showed up in the gut. So looks like that's a 'yes' for that column, eh?

My neurological symptoms are kinda my CC meter :P

I can tell by my neurological symptoms if something is made in a shared facility with wheat or soy .

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Sorry I am so late--just saw this post!!

This is fantastic news! Yaay!!

Shauna, you were one of the first people to respond to my questions on here and I am so inspired by your persistence and recovery.

Thanks for sharing so much of your knowledge!!

Good for you!! :)

Continued good health to you!!

:)

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Arrrgh - missed the last few post on this! Thanks for the congrats, guys. :-D And I had no idea I was one of the first responders, IrishHeart! :D Happy to share...probably more than I should be, LOL. I think when I'm 95 or something, perhaps I'll learn to stop talking, but until then, I babble incessantly, heh.

what is the super super gluten free diet or where can i find it?

I think it could also be called the paranoid celiac's diet, LOL. Basically, check every single thing ya eat for gluten, and then wash it all anyway, just in case. ;)

I do things like talk to farmers and basically have conversations like this:

- Do you use any compost for your veggies? Yes? All right, then what's in your compost? No grains or straw from grains, lovely. Is all of the produce used in your compost also grown in your garden? Yes? That's good. Was any of it from scraps that were cut up in your kitchen? Yes? Do you cook with gluten in this same kitchen? Yes?

Gluten cc risk.

- Do you use any pre-emergents? (To keep weeds down) Yes? what are the ingredients? Cornmeal, you say? Do you know the source for that cornmeal? No?

Gluten cc risk because of the corn, which was in all probability NOT processed in a gluten free facility

- Do you have any animals on your farm? Yes? What is their feed? Grains, huh? Do you use any manure from these grain fed animals on your produce? Yes?

Gluten cc risk due to high likelihood for gluten contaminated grains that can make it through partially digested into the feed, especially if the animal happens to be ill or not digesting properly.

- Do you use any fertilizer? Yes? Is it organic? Yes, lovely. Does it involve any fish emulsion? Yes, it does?

Gluten cc risk, because the fish are fed gluten feed in the water, it coats the skin, and the fish are completely contaminated when they are made into the fish emulsion.

I've been lucky enough be introduced to some other sensitive celiacs who share some products that worked, information about practices in certain facilities, etc... so I didn't have to do all the research myself for the few processed foods I have (like salt and olive oil). But most of the time, it's lots and lots of questions and farmers markets.

Now, sometimes I will still try produce or such even if not all the answers are exactly what I'd hope for, because the risks are pretty low for some of this. Sometimes it's okay, if I wash it carefully enough. Sometimes it really isn't. But I get to talk to every farmer I get food from like this. A lot of times they really don't know the answers to most of the questions and have to check it out, or aren't willing to check it out.

It's been interesting how this has changed my whole outlook on food, though, along with my kids. Aside from a couple things that I seem to be able to eat from the normal store - like avocados, if I wash them really carefully - all our veggies and fruits are seasonal now. The kids are SO excited when something new is ripe and being sold at the farmers market!

And because we have to talk so much to all the farmers, everyone knows us now. We say hello to them all every week, they ask how the family is, the kids, share new information and such. Even the people I couldn't buy from have chats with me, sometimes about new recipes they are using for things like, say, salsa, simply because I had to spend so much time with them trying to see what was safe, you know? They have been happy to give me ideas on how I might be able to recreate their recipes, since I can't eat what they make due to my food restrictions. It's a great community to be a part of at this point.

Although doing it all from scratch is still a pain in the butt. And every once in a while, I'll try something that I KNOW I shouldn't (it's still gluten free of course, but I don't know the farmer, or it's processed with a couple ingredients, etc... so it's not gluten free enough), and I pay for it big time, like the idiot I am. I suppose there's a little part of me that hopes, after things have been good for a while, that maybe sometimes these reactions were something else, or that I might be okay with just a little teeny bit of something.

My body then tells me 'No, stupid, how many times to I have to mess you up for you to get this into your thick head? No more eating this crap!'

I think that's finally starting to completely sink in. Perhaps in part because I have started to get into enough of a groove that I'm not completely overwhelmed by all the cooking quite so much anymore. I'm hoping that maybe, if more and more people are having issues like this, more and more farmers may start to cater to us, too, but I'm not thinking that's gonna happen any time soon, ya know?

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what is the super super gluten free diet or where can i find it?

I know you asked Shauna this, but I thought I'd put my 2 cents in. I ask all those questions and go to farmer's markets too, but to begin with you can try something simpler and see if you get any improvement.

Eat only produce and meat. With produce watch out for things grown on straw like strawberries and mushrooms. Watch for things coated like apples and citrus. Wash and peel everything. With meat watch out for chicken, and get meat in the big packages that come directly from the meat processing facility, not cut up in the store. With seafood, don't get farmed, and make sure that they change gloves and get it directly from the package. Avoid soy, dairy, grains, beans, coffee, spices, chocolate and anything processed at all, even salt.

You can try this for a couple of weeks and if it works. Then you are probably a super sensitive celiac. You can start adding things. Add one per week and keep track of your symptoms. You can start asking all those questions at the farmer's markets.

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And I had no idea I was one of the first responders, IrishHeart! :D Happy to share...probably more than I should be, LOL. I think when I'm 95 or something, perhaps I'll learn to stop talking, but until then, I babble incessantly, heh.

I do not think you are a "babbler" :)

"babblers" make no sense when they talk.

;)

you are "sharing"...see the difference?? :lol:

besides, I am a bit of a "sharer" myself :lol:

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