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

Still Reacting To An Exposure From Last Wed?


e&j0304

Recommended Posts

e&j0304 Enthusiast

Last wednesday I went to my friend's house to take some pictures of her newborn for her and I brought Ella to play with her other little girl who is Ella's age. The girls were playing and then it got a little quiet in the toy room so I went in there and they were eating a Nestle crunch type candy (little wrapped bars) that I assume have gluten in them since there were crispy things in it. I think she had two mini bars.

The next day she complained ALL DAY that her tummy hurt and was just not herself. She also had lots of mushy, undigested stools. The tummy complaints lasted two days and then after that she was acting extra hungry and was still kind of grumpy but said her stomach felt better. However, she continues to have really mushy, gross stools that aren't at all formed. It's not watery diarrhea, but just really loose.

Does this sound like it's still a gluten reaction or maybe just a bug? She hasn't had her reactions drag out this long in the past, but I wonder if she is just more sensitive to it now.

Also, she does not have a fever, but can a gluten reaction cause a fever? I thought I heard that once and wasn't sure if it was true.

Thanks so much for any thoughts on this.

Also, we ordered enterolab tests for Jack, so we'll have some answers for him. I'm not bothering with blood tests for him since he is so young and they didn't come back pos. for Ella when she has obvious problems with gluten. He will be on the diet regardless of the test results and I know I don't really need them, but both dh and I wanted them for peace of mind. I know it's probably a waste of money, but we feel it was well spent.

Again thanks!

Shannon


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



Celiac.com Sponsor (A8-M):



Kasey'sMom Enthusiast

Sharon,

Poor Ella, I hope she gets to feeling better soon. :)

My dd symptoms vary depending on how much gluten she injests. Loss stools and diarrhea at first and then constipation. Usually her symptoms start to let up a week after she's eaten gluten. I guess we're all different in how long it takes our bodies to start to recover. My dd has been gluten-free for months now and her stools are sometimes normal and then sometimes their not. Since going gluten-free, we both seem to have gotten more sensitive to smaller amounts of gluten.

I've not seen any documentation stating a connection between a fever and gluten injestion. However, when I have anaphylaxsis with any IgE reaction my temp. becomes elevated. I think it's the immune systems response to a foregin invader.

I think it's great that you're doing the gene test for Jack. As soon as we can, I want to order the gene test for dd and me. I really am curious what genes we have and maybe we can find where they came from. :)

VydorScope Proficient

My son takes around 2 weeks to totaly recover, with the worst of it being in the firs 4-6 days.

happygirl Collaborator

I know I'm not a kid :D but it takes me a minimum of 3 days to feel remotely normal....and sometimes, it takes up to 2 weeks. In the cases where I get glutened twice over a couple day period (very rare, but awful!) it usually takes a lot longer to heal.

I hope that Ella continues to improve!!

eeyor-fan Contributor

November 17, 2005

Dear Bridget,

Thank you for contacting Nestlé. We welcome questions and comments from our consumers.

For several years now we have been following a strict labeling policy with regard to any of the "Big Eight" allergens in our foods and incoming ingredients. We have insisted that our suppliers notify us if gluten is used in any of their ingredients and yet is not declared on their labeling. So, we believe we have uncovered any potential uses of gluten – containing ingredients. Therefore, any Nestlé products will be fully labeled for any presence of gluten or gluten – containing ingredients.

Attached is the information you requested - we hope you find it helpful.

We appreciate your interest in our products and hope you'll visit our website often for latest information on Nestlé products and promotions.

Sincerely,

Tara L Burney

Consumer Response Representative

Ref: N13495506

Nestlé Confections & Snacks Gluten Free Products

This information includes products, which, to the best of our knowledge, do not contain wheat, rye, or barley/malt ingredients. The list may not be complete subsequent to the date of issue due to formula changes and new product information. Please read each product ingredient statement for the most current information.

Candy Bars-Baby Ruth; Butterfinger; Chunky; Nestlé Milk Chocolate; Oh Henry!

Candy Pieces-Nestlé Turtles; Sno-Caps; Butterfinger BB’s; Goobers; Raisinets; Nestlé Treasures; Bit O Honey

Sugar Candy- SPREE; Nips

Wonka Candy-Bottlecaps; Fun Dip (Lik-M-Aid); Gobstopper; Laffy Taffy; Mix Ups; Nerds; Nerds Rope; Shock Tarts; Tart N Tiny; Runts; Tangy Taffy; SweeTARTS

Seasonal Candy/Easter-Milk Chocolate NestEggs; Caramel NestEggs; Peanut Butter NestEggs; Butterfinger NestEggs; Baby Ruth Crème Egg

Seasonal Candies/Christmas-Milk Chocolate Jingles; Baby Ruth Winter Wobbler; Spree and SweeTARTS Candy Canes; Butterfinger in Milk Chocolate Jingles

Seasonal Candies/Valentine’s-Milk Chocolate Hearts; Butterfinger in Milk Chocolate Hearts; Butterfinger in Milk Chocolate Solid Tigger; SweeTARTS Lollipop

KaitiUSA Enthusiast

Yep, reactions can last a while. My reactions last a good 2 weeks.

jerseyangel Proficient

Yea--I'm still sick after 10 days--enough, already :angry:


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



Celiac.com Sponsor (A8-M):



e&j0304 Enthusiast

Wow, thanks for all the responses. I guess this must be what it is. She was still complaining of her tummy hurting this morning and then had a huge, loose, undigested food stool. I feel so bad for her. She seems to feel better right after she goes and then she'll start to feel bad again.

I just feel like we're so careful at home and I didn't even think that they would be eating candy down in that playroom. I guess accidents happen, right?

I just hope we can steer clear of them for awhile now!

Thanks to all and I'll let you know what Jack's tests come back as.

Shannon

e&j0304 Enthusiast

also, thanks to the person who posted the response from Nestle. I didn't see crunch bars on there so I assume that they do have gluten in them.

jerseyangel Proficient

Crunch bars most definately have gluten in them.

eeyor-fan Contributor
also, thanks to the person who posted the response from Nestle. I didn't see crunch bars on there so I assume that they do have gluten in them.

Your welcome. In November I wrote over 150 companies....you can see replies under my posts (Usually under Product Update headings). Tomorrow I'll be posting the new Paul Mitchell gluten-free list I got today.

Hugs

Bridget

taweavmo3 Enthusiast

Hope she feels better soon! Gluten accidents are the worst........Emmie takes forever before she's back to normal. She doesn't even get so much as a cold, ever, but an accident makes her sick for weeks. Her minimum recoup time is two weeks, but the fatigue usually lasts for longer than that. And she also gets a fever with gluten ingestion, usually a high one, around 102-104.

What always takes me by surprise is the moodiness that follows the actual physical symptoms. Whenever I think she's on the mend, that's when the horns sprout and tantrums from the old days ensue. Even my 6 year old knows to stear clear of her when she's in a "gluten rage". She becomes super sensitive with anyone touching her, loud noises bother her, she goes around screaming, hitting, biting, etc. The last time we went through this was when I went through the pantry, throwing out all the gluten snacks we had left.....it was a bit rash looking back now, but I couldn't stand seeing it in the house, knowing what it did to her!

And good luck with the Enterolab testing with Jack, I definately see your point in getting some testing done. I'm keeping Ben off of all diary and soy right now to see how he does. I never got our results for celiac back, the lab actually lost his blood sample! I told the ped maybe soy is a problem, and he said "oh yeah, 50% of kids with milk allergy are also allergic to soy" I'm wondering WHY the heck he didn't tell me this 8 months ago when I explained Ben had a milk allergy, and we were still having diarrhea problems. Once again, I found out more info here than I ever have from a doctor. I should just donate my $20 copay to this website once a month instead of wasting it at the doctors office!

Anyhoo, I'm derailing a bit. Take care of little Ella....hopefully she's over the worst of it!

e&j0304 Enthusiast

thank you Bridget and Tamara.

It's so nice that you post those lists, Bridget and I'm sure they help so many people!

Tamara, I hope you figure things out with Ben. I know you have said in the past that Emmie has terrible reactions. It's so sad when they get this sick over gluten! She had such a small amount too...

I think she is finally starting to feel better although her stools are not yet back to normal. She had another huge loose one just a little bit ago. You know, I can't think of anywhere else where I would just so openly talk about my child's bowels! :)

Thanks again to everyone and I hope we're all able to keep our kids safe and gluten-free through the holiday season!

Shannon

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.