Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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.
    • admin

      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.
0

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...

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. ;)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,368
    • Total Posts
      917,519
  • Topics

  • Posts

    • Tri-Tip Salad with Beets and Arugala (Gluten-Free)
      In many parts of the country, it's not uncommon to find some meat in your salad. This recipe tops fresh greens with sweet oranges, roasted beets and sliced Tri-tip steak. View the full article
    • Need help with "positive" blood test results
      You'll want to keep an eye on all your vitamin levels, as absorption problems are quite common with gastritis. You've probably already looked it up, but this is the WebMD page on gastritis. http://www.webmd.com/digestive-disorders/digestive-diseases-gastritis  It's not the best article as they mention 'treating' it with antacids which is pretty much the opposite of helpful. (https://www.sciencedaily.com/releases/2002/01/020115074441.htm) If the medication they were going to prescribe is an antibiotic, you might want to reconsider. If you have H. pylori, an antibiotic is the only sure way to get rid of it. If you don't get rid of the bacteria, the B12 deficiency will worsen.  
    • 9 year Old going through testing
      Yes, ATTITUDE, in all caps, and i am in the field of health care...!
    • TTg IAG > 100 but also Hasimoto's
      Thanks for pointing all that out Gemini! I look forward to finally getting off gluten for good to see how much everything changes.  I never thought about the absorption of my synthroid with all my other issues.  I just see my primary dr. for all my thyroid, perhaps I will ask for a referral to an endo dr for further evaluation and treatment.  Thanks for all the information! 
    • Gluten And Vertigo
      Christiana, I just felt to look at the site. I thought I had clicked to get email alerts. But, actually my email has been 'fritzing' sort of.  Thank you for your note. It is important for my diagnosis. I was diagnosed with chondritis of the collar bone a few months before the fall that resulted in the immobile right arm. The osteo surgeon gave me a cortosol shot that helped a lot. That MRI showed a rotator cuff tear nearly 2/3 thru the strip of tissue that connects the muscle tissue to the bone and makes the shoulder 'rotate' in place.  That was almost a year ago now. I have been learning to be very very mindful about how I use that arm, when I reach, carefully, how I rest it and sleep position. Interesting that I did see a search answer that said ' they are saying now that there could be a connection btn rotator cuff tear and inflammed collar bone. My primary doctor also said I could have an inflammed chest wall that resulted in the chondritis. I remembered that word from a child's diagnosis years ago. That was in his knees and was treated by this same osteo surgeon, by casting the legs over summer holiday, which ended in healed x-rays. That was osteo chondritis desicans. He said then, 'if it is horses, we would have to shoot them.'  I tried to get a blood test three weeks ago for the same antibody we were treating that child with thru his then pediatritian, for rheumatoid antibodies/ recurring strep throat. I had gotten a 'sort of' diagnosis, or agreement from that primary care doctor, allowing me to get the recommended antibiotics (one of the few treatments that it is allowed, because of the need to keep the hearing). But, his new nurse did not relay the request properly. I hate doctor office politics. I hope this newbie is not going to mess with this doctor's little family as well. Last month when researching Meniere's one of the things listed about it was that autoimmune disease is connected to it also. I was hurt before the falls and the inflammation and the collar bone chondritis and the rotator cuff tear. I was very very concerned about it setting off some kind of autoimmune inflammation reaction or worse that can happen when tissue cells are being repaired rapidly and it felt like lots of toxins were being cleansed and processed over a period of many months. The only similar feeling I have ever experienced was when I had a 'deep tissue massage' to release and cleanse a cortisol 'hump' I had after a prolonged period of high family stress situation. Right now, my primary (an O.D. , or osteopath) is working with me. There are two ENTs in this area he offered for Meniere's and has given me Physical Therapy at his complex for Balance Therapy. It is great that that therapist has a MIL that is also dealing with Meniere's and getting exercises from a major hospital complex in the city. I was able to give her some celiac's diagnosis information. Sounded like her MIL and her son were likely to be candidates.  I did not know what the definition was of the term 'vestibular' as in vestibular migraine, another connection to Meniere's. I just typed www.bing.com and then typed 'definition of vestibular.' That had information about the connections btn hearing and sitting positions. I will look up costochondritis. Thank you, again. Best wishes, Anne
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,514
    • Most Online
      1,763

    Newest Member
    Katster02
    Joined