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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    2. - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

    3. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    4. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    5. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA


  • Celiac.com Sponsor (A19):



  • Member Statistics

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

    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.