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

Where Does Gluten Hide


hermit41

Recommended Posts

hermit41 Newbie

I have been reading the posts on this forum for some time but only recently decided to join. I was diagnosed with "probable" DH by skin biopsy about 2 years ago and with Celiac Disease a bit over a year ago by blood test. At that time I went on what I hoped would be a Gluten Free Diet, and to a large extent it has worked. At least I have had considerable improvement in the operation of my bowels, movements, bloating, etc.; and have had long periods of remission from the DH blisters. About 6 and 4 months ago I had upper GI scopes and no evidence of Celiac Sprue was found. Still I don't know if this was because I had actually healed because I immediately went for a gluten free regimen after the blood test diagnosis, or what.

At any rate, my problem is that despite what my wife and I think is a robust vigilance routine, I continue to get outcroppings of DH blisters that I cannot attribute to anything I ate at home, visits to restaurants or inattention to the allergen details on food packages. These can last for a month and then clear up for a month following the same routine.

I have been suspicious of everything and most recently some of the left over Easter candy specifically Hershey's Candy Coated Milk Chocolate Eggs. I have heard that some food colorings have gluten in them. But the allergen information on the packages indicates otherwise. I have put my trust in the allergen information on the packages.. but something keeps biting me. Does anyone have similar experiences or knowlege of what addidtives might contain gluten and still escape being noted on the allergen information.

Cheers,

Craig


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



Celiac.com Sponsor (A8-M):



magpie Newbie

sounds like you and I are paddling the same boat , for about the same amount of time, I dont know the answer but maby thee'se few things will help I hope so . I thought that all red meat was safe icon8.gif it's not per wegmans a few weeks ago , if any meat products are cut up instore they have been CC this includes cut up chicken , pork , turkey ect, ect , so ask your meat dept about there good's , it really is about starting from scratch if anyone isl living in your home that is eating gluten you do need to have all your own gluten-free pot's , silverware , toaster , you know the list and check out everything , gluten can hide in the toothpaste , shampoo , meds , again ect , ect and you need to ask your-self if going out to eat is worth the break out , it does not matter that you are eating gluten-free at the resturant it's the bloody resturant thats one big break out waiting to happenicon12.gifpardon me lol but really next time your in a resturant just watch , from the cleaning of the table your sitting at to the person that is serving your meal they are not washing there hand's after everything they touch , and thats just what you can see , it's just not worth it to me ,thats just my oppion . but any way I hope this helps even a little cheers

ang1e0251 Contributor

Sounds like you are having a problem with Sneaky Gluten. It can hide in the craziest places! Recently another poster reported that many frozen chicken pieces are coated with gluten containing broth before freezing. Also I avoid items with "Natural Flavors". This might not always be necesary but unless you call the company you don't know if gluten is one of those natural ingredients. Lots of pet food has gluten. It can also be in the additives that are used to round out supplement or in the coatings.

When you eat in restaurants, you just can't know about CC. It's a crap shoot.

It might help you to keep a food and symptom journal for awhile. It could help pin down a pattern that's not so easy to nail down.

one more mile Contributor

in my house it hides on the counter tops. My food never touches the counter now. There is no 5 second rule for us!

I agree with what the first poster said. Get back to basics and slowly add food. I add things one at a time. If trying something new I take one bite and wait about 15 minutes. I would much rather have to heat up a new food then spend a few days in the bathroom. I have even done this when dinning out and had waitress's come over and ask me if the food was ok. My friend teases me that I should send a food tester ahead of me.

Another hiding place is in spices that are added to processed food. One place I called said that they can not promise that their vendors are gluten free. and what may be gluten-free one time may not be in a few months.

You are not actually walking in to a dunken doughnuts are you? Just the flour in the air in them makes me itchy.

When you figure it out please let us all know.

irish daveyboy Community Regular

Hi,

Here's a link to something I posted long ago on another thread but on the same theme.

.

Hidden Gluten

.

Best Regards,

David

.

SGWhiskers Collaborator

My sneaky gluten sources:

Hand soap where I work. (darn Vitamin E)

Grocery store (can't go in anymore)

My rice maker (don't ask me how)

Eating with my fingers (spoons for finger food now).

Bird food

The BBQ

Anytime someone else helps with my food.

My favorite tortilla chips (CC?)

Lisa Mentor

Open Original Shared Link

Here is a list of companies who will clearly list ALL forms of gluten. Hershey is not one of them. :angry:


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



Celiac.com Sponsor (A8-M):



Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    4. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Scott Adams replied to Silk tha Shocker's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Help


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,483
    • Most Online (within 30 mins)
      7,748

    AML2013
    Newest Member
    AML2013
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Flash1970
      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • 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.