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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 Sensitive Please Help.
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11 posts in this topic

I am super sensitive to gluten and recently to casein. I have just recently given up all processed foods with the exception of a select few. I thought that I was reacting to Lays Stax so I quit those. I KNOW I reacted to rice Chex. I am ok with Betty Crocker yellow cake mix. I make my banana bread with that. So other than the cake mix and bisquick which are produced in a dedicated facility and Smart Balance spread which is gluten-free and cf, I am not consuming anything processed. I has a bad reaction to Stax and Chex earlier this week and I just finished off the chex tonight with my homemaderice milk and I was in the bathroom with a reaction minutes later.

Are any of you THIS sensitive? I guess I am going to have to go with foods that I make myself. Sigh...

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I've been scared to try chex.

I'm afraid I am that sensitive too.

But I can't say for sure...because I just don't test things very often.

Kettle Brand Kettle chips don't bother me. Do they bother you?

I eat those and Rudy's bread and that is about it...except for some chocolate.

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I am afraid to try kettle chips. Once I feel better, I will give them a try. It's hard going from a person who could eat anything to someone who is super sensitive to gluten and casein. I suppose going back to basics and eating meat, fruit and veg would be the best thing for me. It seems like I keep getting more and more sensitive as time goes on.

Thanks for your help.

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I'm right there with you.

I used to think Oh I can do this!

I would eat in restaurants...but after a few attempts failed...I decided it's just not worth it..ugh!

Maybe there are certain products that are always safe for super-sensitives...and we will find them! Wouldn't that be nice?

Should start a list of things that never make anybody ill...ever.

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Yes, there are others who are that sensitive. I react to rice chex too. I haven't even tried those other things. Last winter I found that I even had problems with store bought produce. I'm trying to grow more of my own. I've been freezing stuff like crazy to last over the winter.

At least I have control over what I eat. It's harder to control exposure to environmental gluten.

My daughter got glutened yesterday when she washed her hands, but then touched a doorknob before eating her lunch. She knew it might be a problem, but didn't think that it would. Wrong! She looked 6 months pregnant last night.

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I am super sensitive to gluten and recently to casein. I have just recently given up all processed foods with the exception of a select few. I thought that I was reacting to Lays Stax so I quit those. I KNOW I reacted to rice Chex. I am ok with Betty Crocker yellow cake mix. I make my banana bread with that. So other than the cake mix and bisquick which are produced in a dedicated facility and Smart Balance spread which is gluten-free and cf, I am not consuming anything processed. I has a bad reaction to Stax and Chex earlier this week and I just finished off the chex tonight with my homemaderice milk and I was in the bathroom with a reaction minutes later.

Are any of you THIS sensitive? I guess I am going to have to go with foods that I make myself. Sigh...

Hi!

I saw your post today and I just had to reply because I sooooo know what you are going through. To answer your question, yes some people are really sensitive! I am definitely one of those people. It took me a long time to figure out what I can and cannot tolerate. Mostly I've figured things out by trial and error (unfortunately). It is really hard because there are so many "gluten free" products on the market now that look really delicious, but I cannot tolerate 99% of them :( I have not found a brand of potato chip that I can tolerate, and I'm pretty sure I've tried them all. I make my own in the oven now. I also have not found a brand of cereal that I can eat. I make hot cereal from brown rice that I grind in a coffee grinder though. I had really made peace with it for the most part, but now that I am pregnant :) I can't even walk down the cereal aisle at the market without wanting to cry. Anyhow, I know everyone is different in what they can and can't tolerate, and I know that some people are even more sensitive than I am. But below is a list of processed foods that I have found I can tolerate so maybe this will help you.

Tinkyada rice pasta

Silk Almond Milk

Heinz ketchup

Kraft BBQ Sauce

Smuckers natural peanut butter

Kinnikinnick white sandwich bread

Hunt's canned tomatoes

I am usually ok with the regular store brand of granulated sugar or brown sugar although I have used Domino with no problem too. Also, never had a problem with any brand of olive oil I've tried. You can make amazing peanut butter cookies from just peanut butter, eggs and sugar (if you can tolerate these foods).

Hang in there, it will get easier!

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I am super sensitive, too. I avoid most processed foods and cook/bake the majority of what I eat from scratch.

There are things I have never had a problem with, and then there's things that usually leave me feeling icky, even though they're supposed to be safe. And potato chips are one of them. I used to love chips, but most of the time they don't sit too well so I just avoid them.

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Are any of you THIS sensitive? I guess I am going to have to go with foods that I make myself. Sigh...

Yeah, lot of us are right there with you. I agree: sigh. I'm off dairy as well, too. And eggs and soy, but seriously, without dairy and gluten, most processed food is gone anyway, yeah?

I have a brand of oil and a salt that I can eat safely. I had a whole grain sorghum, but it looks like I'm reacting to it so it's outta here for a while. I just found out it shares a harvester and processing equipment with gluten grain places, so that's likely the problem.

Otherwise, I'm trying very hard to become a better cook with lots of home grown herbs, veggies and a few fruit, and a little meat. Because at this point, it looks like I'll never eat good food again otherwise and I so, so, SO miss good tasting food.

I'd better become super-whole-foods-chef soon. ;)

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I just found out it shares a harvester and processing equipment with gluten grain places, so that's likely the problem.

Last I checked it was just harvester and not processing equipment. They clean the harvester for 2 days and then use the first large amount (I forgot how much) for the animals. Nonetheless, I have found both corn and wheat in it.

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Oh thanks, Steph! I got that information second hand and didn't double check it. Ha, teach me to stop doing that! :-)

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I am newly diagnosed with gluten sensitivity. I have read that non food items such as hand lotion, chap stick, and lipsticks could be a problem. Are there any that are safe? If I call the manufacturers, what questions do I ask?

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