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

Hidden Ingredients

nickim

Recommended Posts

nickim Newbie
nickim
Posted

I was diagnosed with Celiac Disease 2 months ago. I immediately went on a gluten-free diet. I got all sorts of information, met with a dietician and have not cheated once. I just had an endoscope and was told that I still have traces of gluten, and that my villi are atrophy (flattened) still and that after 2 months on the diet they should have started to heal. I am so confused, not sure what I am doing wrong. I eat very healthy, mainly fruits and veggies with spices. Are there certain ingredients in spices that contain gluten. I chew alot of gum, eat alot of salads, and usually have ranch dressing, Hellmans appears gluten-free along with Margetti's (sp). I have had chips, but always corn or tostados and meat without bread crumbs. When using barbeque sauce I use sweet baby rays. Breakfast I usually make my own smoothie with yogurt and fruit and milk or cereal from a gluten-free like natures path. I do drink the Redbridge beer which is gluten-free. I also drink Mt. Royal Light Whiskey which the company wrote to me and said it was gluten-free. Festival Foods has lunch meat from a company Krestzmar(sp) that is gluten-free and I usually get that from their deli. The bread I eat is gluten-free, UDI ( by the way it is the best bread ever, I almost cried when I had my first bite), I have my own toaster and put homemade strawberry jelly on it. I also enjoy ice cream, but there again the ingredients look okay. Is there a hidden ingredient in ice cream. If it has modified food starch, I don

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

If you are in the US, modified food starch is not wheat unless is specifically says so using the word "wheat." Hidden gluten in ice cream is almost unheard of--the only gluten would be in obvious additives like cookie dough or cookie chunks.

Spices refers to a set of plant materials, none of which are grains. "Spices" does not hide gluten. "Seasonings" is a whole different ball game, though.

My first guess would be cross-contamination at the deli.

Some people have reported issues with corn chips made by Frito-Lay. Others have no problem with them.

Lisa Mentor
Lisa
Posted

Keep a food diary. It often can pin point an issue. But, depending on your damage, it could take up to a couple of years for a full recovery.

Post your daily menu. Many of us can help you with a potential issue.

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Since you are new to the gluten free diet I would suggest you also go dairy and soy free for a few months to promote faster healing. Also look at all products that go into your mouth to be sure they are gluten free. Include your drinks, medications, toothpaste, mints, anything. Try not to use plastic, wooden or coated cooking items including cutting boards, toasters and storage containers that have been in contact with gluten.

Two months probably is not enough time to show much healing if you have been glutened a few times. Think of it as a cut on your arm. If you pick the scab off every now and then it will take longer to heal. So every time you get glutened it will take longer for your intestines to heal.

Gemini Experienced
Gemini
Posted

I was diagnosed with Celiac Disease 2 months ago. I immediately went on a gluten-free diet. I got all sorts of information, met with a dietician and have not cheated once. I just had an endoscope and was told that I still have traces of gluten, and that my villi are atrophy (flattened) still and that after 2 months on the diet they should have started to heal. I am so confused, not sure what I am doing wrong. I eat very healthy, mainly fruits and veggies with spices. Are there certain ingredients in spices that contain gluten. I chew alot of gum, eat alot of salads, and usually have ranch dressing, Hellmans appears gluten-free along with Margetti's (sp). I have had chips, but always corn or tostados and meat without bread crumbs. When using barbeque sauce I use sweet baby rays. Breakfast I usually make my own smoothie with yogurt and fruit and milk or cereal from a gluten-free like natures path. I do drink the Redbridge beer which is gluten-free. I also drink Mt. Royal Light Whiskey which the company wrote to me and said it was gluten-free. Festival Foods has lunch meat from a company Krestzmar(sp) that is gluten-free and I usually get that from their deli. The bread I eat is gluten-free, UDI ( by the way it is the best bread ever, I almost cried when I had my first bite), I have my own toaster and put homemade strawberry jelly on it. I also enjoy ice cream, but there again the ingredients look okay. Is there a hidden ingredient in ice cream. If it has modified food starch, I don

Kim27 Contributor
Kim27
Posted

I think it sounds like you are being very vigilant about your food. I'm surprised your dr had you repeat an EGD already! My doctor retested my TTG IGA levels 5 weeks after going gluten-free, but only b/c I just had to get some other bloodwork done and she said might as well to see if it's dropping at all. HOWEVER she made it very clear that she would not expect my levels to be in the normal range by that time frame. She said that typically blood is retested after 5-6 months. She never mentioned a repeat EGD at this point. It makes sense that you might still have gluten in your system and visible damage, 2 months just isn't that long. If you've been damaging your body for a long time, it's gonna take some time to heal completely. I think they have insane expectations. I wouldn't take what they say too hard, if you keep being vigilant, check all your foods, and be as careful as you sound, you should continue to heal, just not going to be overnight.

ravenwoodglass Mentor
ravenwoodglass
Posted

How are you feeling? Are you still having symptoms? If your not I wouldn't worry too much about the results of the endo as it was done really quickly. Most doctors don't reendo until at least 6 months after the diet is started, if ever. Mine didn't reendo until years after I started the diet and then since he was doing a routine 'over 50' colonoscopy figured he might as well do the endo at the same time.

One thing I will say is that there are rare celiacs, like myself, who react to distilled gluten grains like that found in whiskey or gluten grain derived vodkas. It your are still having symptoms you might want to drop those for a while and see if it makes a difference. Most will tolerate them but not everyone does.

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

Celiac.com Sponsor (A8-M):


nickim Newbie
nickim
Posted
  • Author

I think it sounds like you are being very vigilant about your food. I'm surprised your dr had you repeat an EGD already! My doctor retested my TTG IGA levels 5 weeks after going gluten-free, but only b/c I just had to get some other bloodwork done and she said might as well to see if it's dropping at all. HOWEVER she made it very clear that she would not expect my levels to be in the normal range by that time frame. She said that typically blood is retested after 5-6 months. She never mentioned a repeat EGD at this point. It makes sense that you might still have gluten in your system and visible damage, 2 months just isn't that long. If you've been damaging your body for a long time, it's gonna take some time to heal completely. I think they have insane expectations. I wouldn't take what they say too hard, if you keep being vigilant, check all your foods, and be as careful as you sound, you should continue to heal, just not going to be overnight.

This was my first endo, they never tested me because my bloodwork for the celiac test was extremely high. They told me that 2 of the tests would report a high score of between 8 and 14 to test high for celiac, and mine were both over 100, and the 3rd test was high around 400 and I was over 520. Because they results were so high they didn't do a colonscopy or endo. I wasn't feeling better, still bloated etc after a week and 1/2 of feeling good, that is why I requested they do the test. I just eanted to know for sure.

nickim Newbie
nickim
Posted
  • Author

If you are in the US, modified food starch is not wheat unless is specifically says so using the word "wheat." Hidden gluten in ice cream is almost unheard of--the only gluten would be in obvious additives like cookie dough or cookie chunks.

Spices refers to a set of plant materials, none of which are grains. "Spices" does not hide gluten. "Seasonings" is a whole different ball game, though.

My first guess would be cross-contamination at the deli.

Some people have reported issues with corn chips made by Frito-Lay. Others have no problem with them.

I am in the US and have started the journal again. I also have dramatically reduced my portion sizes and that seems to help too.

Morningstar313 Newbie
Morningstar313
Posted

I was diagnosed with Celiac Disease 2 months ago. I immediately went on a gluten-free diet. I got all sorts of information, met with a dietician and have not cheated once. I just had an endoscope and was told that I still have traces of gluten, and that my villi are atrophy (flattened) still and that after 2 months on the diet they should have started to heal. I am so confused, not sure what I am doing wrong. I eat very healthy, mainly fruits and veggies with spices. Are there certain ingredients in spices that contain gluten. I chew alot of gum, eat alot of salads, and usually have ranch dressing, Hellmans appears gluten-free along with Margetti's (sp). I have had chips, but always corn or tostados and meat without bread crumbs. When using barbeque sauce I use sweet baby rays. Breakfast I usually make my own smoothie with yogurt and fruit and milk or cereal from a gluten-free like natures path. I do drink the Redbridge beer which is gluten-free. I also drink Mt. Royal Light Whiskey which the company wrote to me and said it was gluten-free. Festival Foods has lunch meat from a company Krestzmar(sp) that is gluten-free and I usually get that from their deli. The bread I eat is gluten-free, UDI ( by the way it is the best bread ever, I almost cried when I had my first bite), I have my own toaster and put homemade strawberry jelly on it. I also enjoy ice cream, but there again the ingredients look okay. Is there a hidden ingredient in ice cream. If it has modified food starch, I don

GFinDC Veteran
GFinDC
Posted

You really shouldn't assume your reactions are due to gluten. You could also be reacting to other foods as many of us do. Soy, nightshades, dairy, corn, eggs, etc etc etc can all be problems. Check out the top 8 food allergens for a starting list of potential problems.

nickim Newbie
nickim
Posted
  • Author

I'm very new to the gluten free lifestyle. I was under the impression that Sweet Baby Rays was not gluten free. Are they? Because they're my favorite, so that would be amazing!

Sweet Baby Rays is definitely gluten free so enjoy!!

  • 5 weeks later...
Jenn27 Newbie
Jenn27
Posted

Check the yogurt.. Any Yoplait yogurt is safe but there are many that aren't.

dilettantesteph Collaborator
dilettantesteph
Posted

Some spices are contaminated enough to bother super sensitive celiacs.

T.H. Community Regular
T.H.
Posted

How are you doing now? Do the symptoms seem to be improving, or are you still having trouble?

Archived

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

Go to topic listing

  • 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. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thanks so much!
    2. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      I have osteopenia and have cracked three vertebrae. Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins. Blood tests don't reveal the amount of vitamins stored inside cells. The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four...
    3. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician? Have you been checked for nutritional deficiencies? Osteoporosis? Thyroid? Anemia? Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the...
    4. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      @JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form...
    5. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748
    Beccad611
    Newest Member
    Beccad611
    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

    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.