Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Super Sensitive Please Help.


GFreeMO

Recommended Posts

GFreeMO Proficient

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...


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

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.

GFreeMO Proficient

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.

eatmeat4good Enthusiast

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.

dilettantesteph Collaborator

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.

aprildawn700 Newbie

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!

lizard00 Enthusiast

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



T.H. Community Regular

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. ;)

dilettantesteph Collaborator

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.

T.H. Community Regular

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

Msbhaven1800 Newbie

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?

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,194
    • Most Online (within 30 mins)
      7,748

    Eliana123
    Newest Member
    Eliana123
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.